Insulinoma & Whipple triad - Surgery (update)

Sunday, 15th January 2006

Insulinoma

Insulinoma is the most common functioning tumor of the pancreas, and affected patients present a tableau of symptoms referable to hypoglycemia (symptoms of catecholamine release), mental confusion and obtundation. Many patients have symptoms for years. Some have been greatly troubled by emotional instability and fits of rage, often followed by somnolence.

Incidence: This tumors are so rare. Probably the best series of insulinomas is from the Olmsted County (Mayo Clinic). This study (cohort) was seen over a sixth decade period (‘27 to ‘86). The incidence there was 0.4 per 100,000 person-years (or four cases per million per year).

The diagnostic hallmark of the syndrome is the so-called Whipple triad, wich consists in symptoms of hypoglycemia (catecholamine release), low blood glucose level (40 to 50 mg/dL), and relief of symptoms after intravenous administration of glucose. The triad is not entirely diagnostic, because it may be emulated by factitious administration of hypoglycemic agents, by rare soft tissue tumors, or occasionally by reactive hypoglycemia. The clinical syndrome of hyperinsulinism may follow one of two patterns or sometimes a combination of both.

The symptom complex may be due to autonomic nervous overactivity, expressed by fatigue, weakness, fearfulness, hunger, tremor, sweating, and tachycardia, or alternatively, a central nervous system disturbance with apathy (or irritability or anxiety), confusion, excitement, loss of orientation, blurring of vision, delirium, stupor, coma, or convulsions.

Because cerebral tissue metabolize only glucose, prolonged profound hypoglycemia may cause permanent brain damage. Clinicians need to be alert to this when attempting to induce hypoglycemia by fasting.
Preoperative NPO orders must be accompanied by intravenous administration of glucose.

The diagnosis: Is established by demonstrating inappropriately high serum insulin concentrations during a spontaneous or induced episode of hypoglycemia. Then imaging techniques are used to localize the tumor. The available procedures include spiral CT, arteriography, ultrasonography (transabdominal and endoscopic), and 111-In-pentetreotide imaging. Transabdominal ultrasonography is our preferred initial test.

Insulinomas are small (usually <1.5 cm), usually single (only 10% are multiple and those are usually associated with MEN 1 syndrome), usually benign (only 5% to 10% are malignant), and usually hard to find. Success in localization often parallels the degree of invasiveness of the study.

Its treatment:
Treatment for insulinoma is surgical. At operation, the incision is dictated by operator preference, either a midline incision from the xiphoid to below the umbilicus or a bilateral subcostal incision. Exposure should be generous, and mechanical ring retractors are an asset. The entire abdomen should be explored, with particular attention being paid to possible liver metastases.

The head of the pancreas should be palpated carefully and examined anteriorly and posteriorly; the body and tail of the pancreas should be palpated, dividing any ligamentous attachments to the spleen, delivering the spleen into the wound, and rotating the tail anteriorly to allow palpation and visualization.

Anyone operating patients with pancreatic islet adenomas should be familiar with techniques for, and limitations of, intraoperative ultrasonography. The higher-resolution (7.5-to 10-MHz) transducers are used in the pancreas; because of its greater depth of penetration. Islet tumors are detected as sonolucent masses, usually of uniform consistency. Several reports attest to the high degree of accuracy of intraoperative ultrasound.

Review of current literature leads to the almost startling conclusion that nearly all syndromes of hyperinsulinism are due to insulinomas and that nearly all insulinomas can now be detected before or during surgery. Having said this, there appears to be scant justification for an empirical (“blind”) partial pancreatectomy except in patients with insulinoma plus MEN 1.

Most insulinomas are benign and can be enucleated. Nutrient vessels in the bed of the adenoma should be cauterized.

The 10% of patients with hyperinsulinism who have MEN 1 syndrome have multiple islet tumors, one of which is usually dominant and responsible for the excessive insulin output.

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1,546 Responses to “Insulinoma & Whipple triad - Surgery (update)”

Angie

Friday, 1st December 2006 at 5:46 am

I am suffering from an insulinoma (I am not a ferret or a dog) and have just elected for surgery in feb 07. I would like to hear from other people who suffer or who have had the surgery or/and their experiences. All i keep finding is experiences from ferrets not people, so glad I have something in common with them!

It seems I have been living with low blood sugar for years and have put up with it thinking this is a peculiar part of me. It was only after a blood test this year that deduced my glucose levels were particularly low that started the ball rolling - and baby has that ball rolled!

After a 72 hr fast - I lasted 30 hrs with two hypos, an MRI and CT scan i then had a calcium catheter test and recently and endoscopy, all confirming what they thought and what it was doing. I have been prescribed Diazoxide tablets to control the insulin and now a diuretic to control the odema from the diazoxide.

Now, I am booked in for surgery and freaking! The medication really helps but not all the time so really at 40 I really dont want to live like this, however scared of the surgery. I actually dont know what it will be like to be normal again and just hope that I dont suffer more complications from the surgery that will make me question whether it was worthwhile having the operation or sticking with the medication.
JonMikel, M.D.

Saturday, 2nd December 2006 at 1:55 pm

I wish you luck with the surgery. I think that everything is going to be o.k.
Get well,

Dr. Jon Mikel Iñarritu-Castro
Helen Bruce

Friday, 5th January 2007 at 6:03 am

Hi Angie,

I am a 36 year old that had insulinoma and had the tumor removed last April and all is well.

It was a very big and scary decision to make, however as you I did not want to live with this condition. I am pretty sure that the decision would of been taken out of my hands anyway as I had a reaction to diazoxide (which I believe I was my consultants first patient to have a reaction). I then went onto injecting myself 3 times a day with octreotide which got quite depressing at 10 o’clock at night when you’re tired. Anyway whilst on octreotide I was still having hypos not as often though, therefore I think I was heading towards the surgery.

My op went well with no complications and was in hospital for 2 weeks. I had an excellent surgeon with whom I had a lot of confidence and trust in, he is a top consultant surgeon of Hepatobiliary and Pancreatic Surgery. I can suggest (if you have not already done this) that you do some research on your surgeon and most importantly ensuring he/she is experienced in doing this procedure.

Are you going to have an epidural during and after the op? If you do I would suggest that when they want to take you off the epidural you go onto the patient control morphine then onto the oral morphine. They took me off the epidural and straight onto the oral morphine which did not work, I was in terrible pain. I think you need to go down the different level of pain relief evenly. They did this as they thought I was doing very well and would cope with just the oral pain relief.

I would say that the first two months after surgery is difficult in getting back on your feet and sleeping was a nightmare for me as I like to sleep on my side/tummy. Besides the little hurdles during recovery I am happy that I went with my feelings of getting the tumor removed and trust me I had loads of questions and doubts but my gut feeling was to do this.

I hope that my words have helped you and only you can decide what route you take. I will check this website in case you have any more questions. Wishing you the best for a successful operation and speedy recovery.

Take care
Helen
Angie

Monday, 8th January 2007 at 12:31 pm

Dear Helen
Thank you for taking the trouble to reply to me with your experiences. February is looming up quite quickly.

i would be interested to know where you had your surgery, Im going to be going to the Royal London, Whitechapel.

Since writing the above I have done a bit more reading and have looked into things a little deeper and although at one point I felt it was a very drastic option I now see that having the surgery eliminates any danger of the tumour turning malignant and suffering any more major complications. I have the occaisional hypo, for no reason as I can see, and I know my blood sugar is still low a lot of the time. I have also read that the hypos can turn more severe without warning and this was something to really think about.

The largest worry I have over the surgery is the whipple procedure and the complications resulting from that. As far as having an epidural, I havent discussed it at all, in fact it hasnt even been mentioned. I am going for my pre-admission in the next two weeks so I am hopefully going to find out a little more about the whole thing.

Thank you again for writing and am very glad to hear everything went so well for you. Anything else you think of would be very much appreciated.

Best Wishes
Angie
Helen

Monday, 8th January 2007 at 4:34 pm

Hi Angie,

I think it may be better if we talk if you would like to that is. If so email me at helen.bruce@swessexpct.nhs.uk.

I would like to mention names etc and would prefer not to do it via the website.

Looking forward to hearing from you.

Best wishes
Helen
Brendan

Wednesday, 17th January 2007 at 1:30 am

Angie,

I’m a 31 year old who had an insulinoma removed laparoscopically last year. My life was severely impacted by hypoglycemia - confusion, blackouts, disorientation were a daily occurrence - and the surgery has made all the difference in the world. I spent a month on a glucose PICC line prior to surgery, but because it was done via laparoscope, I was out of the hospital and mostly mobile three days after surgery. I had to have a drain in my abdomen for a further four days, but following that I was able to go to work and function normally. Had I not had it, my hypoglycemic episodes were getting worse and worse, so I’m sure I would’ve eventually gone comatose had it not been treated.

If you have any questions, let me know, but I would very much recommend surgical treatment. It has returned my quality of life to me.

Brendan
Homa

Thursday, 18th January 2007 at 9:53 am

I am a 38 year old who has had insulinoma for the past four years. I had surgery four month a go which was uncussful. They were not able to find the tumor. It was an extensive surgery and it took me more than a month to get back on my feet.
I am going to another hospital in the near future to start all over again. Since surgery is the only cure for insulinoma, I know I will have another surgery eventually. I am not worried about that part. I am more ready for it this time. Since I know what to expect. It would be a little easier. I just hope they can find it this time.

I have had more hypo episodes since the surgery and they have gotten more intense with blackouts. I would like to know if anyone had to go through second surgery to find the tumor and if anyone experineced the hypo episodes suddently getting worse. It is hard to have something that not many people have. Nice to see how other people who have insulinoma are coping with it.

good luck to everyone
Homa
myriah

Thursday, 18th January 2007 at 4:04 pm

I have been going to the doctor since I was a 1 yr. old. I have had my thyroid and blood sugar level checked every other year of my life. I am 28 yrs old and have insulinoma. I am meeting with a doctor in a few days to go over treatment and surgery stuff. At one years old I sneaked out of my room and got up on the kitchen counter and found the sugar bowl. My mom found me shoveling straight sugar in my mouth. From then on out I have needed sugar like crazy. A pound a day, and now I am up to two pounds a day. Once again I went to the doctor and had more blood taken. Then they found this. I have all the side effects listed. Blackouts and all. I wish the best for all of you. So wierd. Myriah
Angie

Tuesday, 23rd January 2007 at 4:37 am

It is certainly interesting getting a few more opinions and experiences….

Dear Brendan
It sounds like the laparoscopy is obviously a successful option if possible but so far my surgeon has decided it can not be done this way with mine.

I do feel that my hypo episodes are not nearly as severe as those of you who have blacked out but feel that going on the information they could easily become as worse with out warning. Many of my symptoms have only come to light and made sense since being diagnosed, the severe night sweats, fuddled speech and distorted sight! I have had a one weird episode recently, when I felt disorientated and a bit “out of it” almost like a lapse in time, seconds I’m sure, but I have definitely been confused once or twice! (Mind you that may be normal!!!)

Best of luck!

Dear Homa
I’m very shocked that you had to go through such serious surgery when they couldn’t find the tumour! Did you have scans and tests? I went through extensive procedures, MRI & CT scans then the calcium infusion test, which can be a full body or just pancreas and liver area and finally the surgeon requested an endoscopy before he would even consider an operation.

I wish you luck in the future.

Dear Myriah

It seems terrible that is has taken such a long time for you to be diagnosed!
Unfortunately for you such a huge ingestion of sugar will only raise your insulin levels which in turn lowers your blood glucose. I have read a lot about diet and insulin. The more sugar you eat the worse you will be. Such a sugar intake creates huge fluctuations in your body with severe lows. Try and resist your cravings and eat cereal bars or fruit instead, even if you eat a lot of small low sugar snacks it surely must be better than such a huge sugar based diet.

I would imagine your doctor should advise you of this so dont take my word for it, read up on diabetes as it has very similar advice for keeping a balance to help diabetics control their symptoms.

An interesting book to read is the Greek Doctors Diet Book by Dr Fedon Alexander Lindberg. He carefully looks at the effect of insulin on the body which I found quite interesting as many times my problems with keeping my weight under control have been ignored even after diagnosis. He says that too much insulin makes you fat!!! Im only part way through so bear with me!!

Ive got two weeks to go now and just want to get it over and get on with recovering!

Thank you for adding to this page it makes really interesting reading and hopefully more people will find it the more goes on!!

Look forward to hearing more!!

Angie
Myriah

Tuesday, 23rd January 2007 at 3:45 pm

Hey Angie, thanks for the reply! I am leaving a site I found about what I have. Almost the same story except she only had her syptoms for two years. I guess the show “house” took after this story! As for the sugar levels, I know!!! I also eat fruit like a mad lady. PER DAY I eat a full Safeway bag of green grapes and 2-3 grapefruits. I even have them sent to my house! OUt of control. The weird part is that my glucose levels are PERFECT! Even a regular blood sugar test, perfect! I wake up in the night all night long eat a grapefruit first and then all the candy! I of COURSE struggle with my weight because it is so bad. That is a huge side effect of insulinoma. For me I am huge. I change on an average of 5 pounds a day. Yesterday I was at 122 and the day before I was 116. A few months ago I was 107. I feel like one of the toy capsules you put in the water and watch them turn into an animal! I had to go to the doctor both days and they laughed right out loud. THey weren’t going to weigh me on the seconds visit, so I told them too. They were shocked! Of course all the swelling hurts like mad, but what can I do? I am only 28 years old and feel like I am 180. The Endocrinogist is now running a ton more labwork and I have to keep pricking myself like diabetics do. I am so jelous you have surgery soon. I want this thing out of me in the worst way!!!! I have a three year old and I want to try to keep up! I am so glad someone has this(not to be rude) because it’s hard to talk to a Ferret! :) I am excited for you to see this site, you will LOVE IT! Talk to you soon hopefully, and I wish you the best of luck! Everyone the best of luck! This thing is so debilitating!!!!!!!!!!!!!!! grrrrrrrrrrr
Myriah

http://cancer.stanford.edu/features/patient_care_news/insulinoma.html
Myriah

Tuesday, 23rd January 2007 at 3:56 pm

Angie,

Oh yeah one more thing. I did try the small snacks thing and resisted the cravings. Unfortunately that’s when the blackouts started to happen. I got so shaky and ate something that wasn’t fruit or candy and then I blacked out about 30 seconds later. Same thing the rest of the times I have tried. I have showed my family and it’s almost like a comedy.(of course it’s not funny)
Thank you for the book advise as well I will be sure to check it out. I was a HEALTH nut before this because of some modeling and traveling I use to do. I am just glad I still have some hair left on my head. Thank you so much for your advice. I have been researching this on my own for years! You have no idea to know how good it feels to not be so alone.

myriah
Myriah
JonMikel, M.D.

Tuesday, 23rd January 2007 at 4:32 pm

Kind patients and readers,

If anyone here wants more detailed information or even illustration of the surgical procedures, please don’t hesitate and contact me here.

Best of all,

Jon
Angie

Tuesday, 23rd January 2007 at 5:27 pm

Dear Myriah

You seem like you are going through such a nightmare, and I can not begin to imagine how bad this is for you. I hope I didnt sound demeaning, but the amount of sugar you have to get through is just so horrific. It is easy with a little knowledge to make quick judgements and I hope your doctors start taking you more seriously!

Insulinoma obviously has many far reaching effects on our bodies and I suppose as it is so rare all the answers probably are just unknown. I hope you find a way through this quickly and wish you well! I will look up your site!
Angie
Myriah

Thursday, 25th January 2007 at 3:00 am

Oh no! You absolutely did not sound demeaning! If I didn’t want to hear your opinions or input, I would NOT have even written!!! As sick as this sounds I am so excited for your surgery. When you are all ready and better I would love to hear all about it! I know your surgery will be a success and I am so glad you are on your way to feeling much better! Thank you for all your insite. The picture on this site makes me glad I am not a surgeon. The whole thing doesn’t look right to me! :) Take care and I hope you liked that site! Myriah
Homa

Thursday, 25th January 2007 at 2:22 pm

Dear Angie
I did go through some tests before surgery. I had a CT and endoscopy, but there were not able to find the tumor on either one of the tests. My doctor decided to go ahead and have an exploratory surgery, Since it appeared that the tumor was very small, instead of doing the calcium infusion test. Surgery does have a high success rate in finding the tumor.I am going to another hospital in the next couple of month and start all over again with diagnosis. I am sure they will do the Calcium infusion test this time. I have heard that it was an invasive test. I know you mentioned that you had it done. How was it? was it really invasive?

I wish you luck with your surgery. The good news is that they had found your tumor so it eliminates the guessing game. they can just go in and remove it. I am sure you won’t have any complications afterwards. My only advice is to take it easy. don’t push yourself and just let your body heal. It takes a while, To not have to deal with insulinoma, is very much worth the trouble of recovering after surgery. It sounds like that your surgery is fast approaching. I wish you the best and good luck

Homa
Myriah

Friday, 26th January 2007 at 5:07 pm

Angie,
I am SO bummed I could cry. Just got more blood work back and the Endocrynologist told me I did NOT have insulinoma. He said I was hypoglycemic and only 70% chance that my symptoms improve. Also my sweating and my average 10 pound weight gain/loss isn’t a part of this. He said it is not hormone related and that he doesn’t know what to do. I have been to EVERY specialist and have all my symptoms personally documented. I went to my son’s school today and had to walk around for an hour. I just about passed out. Providence misdiagnosed me and told me I had insulinoma for sure and that they needed to give me an MRI and or CT scan to find it. WEll just wanted to give you the heads up. You take care and I will be thinking of you. I know your surgery will go great and I still want to hear all about it when you get back energy to write.
Sincerely,
Myriah
Jon Mikel Iñarritu

Saturday, 27th January 2007 at 12:18 am

Angie: I wish you luck in your surgery

Myriah: WHAT? How did he figure that you don’t have insulinoma? Do you have the results of your last blood work?

Anyway, you have the right to ask for a second opinion.

Several insulinoma cases are diagnosed at surgery with transoperatory ultrasonography, like the case of Homa.

Best of all,

Jon
Angie

Saturday, 27th January 2007 at 7:02 am

Myriah

How can they say you dont have insulinoma from blood work alone? With all your symptoms and already one opinion you have whay reasons do they have?

My hospital confirmed the insulinoma after the fasting test. You probably know that normal peoples pancreas stops producing insulin when the body does not have any food intake but the insulinoma continues to secrete insulin so our blood sugar continues to drop. Surely this is the test beyond blood work that they need to take account of.

I seem to have been so lucky that my doctor had a colleague in endocrinology and just happened to be on the ball. All I can do is wish you luck and keep positive that someone will get to grips with this for you. Dont loose hope!! Give them hell!!

PS I wish I was 120lbs!!!! (Im 5ft 7 and weigh 160 lbs which is at least 14 -21lbs more than I want to be, 14lbs of that Ive put on in the last 2 years and thats trying to lose every week)

Best of Luck
Angie
Angie

Saturday, 27th January 2007 at 7:23 am

Dear Homa

You asked about my infusion test…. well I didnt find it bad at all really.
The worst part was the local anaesthetic injection into my groin. Then there was a lot of pressure as they put in the tubes with the wires in. This may not be exactly correct but I will describe it as I remember and going by what I was told - probably in lay mens terms. I didn’t feel anything much as the wires were pushed through the artery, I think I had one in a vein as well.

I watched on the monitor as the wires appeared and as they directed them into the various arteries that they wanted to test. I find things like this very interesting. As the calcium infusion was released I could see a slight fog rising on the monitor and felt an odd warm flush go through my body - wierd!

That was it really! I had to lay flat for four hours afterwards as the vein or artery could rupture. Eating soup horizontally is a real challenge!

I believe they test the hepatic artery going into the liver as well so that they can pick up any rogue cells that may have found themselves an escape route. I think, but may be wrong that this gives one indication of whether the tumour has possibly matastisized.

I hope this helps a bit - I honestly found it fairly routine in the general scheme of things.

Good luck, keep me informed!!

Angie
Angie

Saturday, 27th January 2007 at 7:32 am

Dear Jon

I have been wondering if you know anything about the need for enzyme supplements if you have the whipple procedure? I imagine that when part of the intestine and the gall bladder are removed you lose those areas that secrete such enzymes?
Do you have to take them in tablet form?
Do you take them before every meal?
What happens if you dont?

I just like to be pre-warned!

Oh yes do you know anything about the effects of Diazoxide?
Ive developed increased hair growth from literally my head to my TOES!!! Will this fall out when, as I have, stopped taking it?

Thanks for any info you can give.

Ps Are you using this blog for research? I think its excellent to be able to read and discuss all this and not feel stupid.
Michelle

Saturday, 27th January 2007 at 2:55 pm

I have been suffering with hypo ‘episodes’ for the past three years and recently did a 72 hour fast in the hospital, which confirmed that I have insulinoma. The next step for me is to have the various imaging tests to localize the tumour. I am terrified of having surgery, but am also relieved to know that it can be removed and I will hopefully lead a normal life again. Everyone’s experiences have been helpful to read. I wish you all luck and hope you can live a normal life again soon. I am anxious to hear how your surgery goes Angie. It sounds like you have done your research and I am sure that everything will be fine. Best of luck.

Michelle
Myriah

Saturday, 27th January 2007 at 3:10 pm

Hey Jon it’s Myriah,
Providence said I had it and to go see this guy Dr.Liao that they recommended. Then I went to see him and right then and there said just from the blood work he didn’t think I had insulinoma. He had more blood taken for tests and he said it would show if I did in fact have insulinoma. He called me yesterday and said that no way I have it. He said that he would get me on a medicine that could help the hypoglycemia. However it was only a 70% chance that it would help. HE said all my swelling and hair loss are not going to help with this medicine and to go back to my regular doctor. Apparentely, my blood sugar levels are PERFECT and nothing unusual. IF that were the case then why would he say I even have “severe hypoglycemia”?

I am stuck. I can’t even wear jeans anymore. IT literally rips my skin. You can see every imprint and make of jeans. I have bought the top 5 designer jeans out there and now am over a thousand dollars in the hole hoping they would not hurt somehow. I am so tired. I am struggling to keep my weight off and I can NOT work out what-so-ever. I will come back from the gym with my body swollen and little blood specs on my ankles where my socks were. (Not actual blood out on my sock just little blood vessels all over) I gain a minimum of 5 pounds of solid fluid after the gym. That’s with a low impact workout.

My hair is barely on my head. My skin is WHITE as a ghost. I am Italian and I have never been anything but olive skinned. Obviously, something is not right. I use to model before my son was born and now I look and feel like I am a corpse. The circles under my eyes are so bad it looks like someone hit me.

Apparently the specialist, (David Liao of Western Washington Medical Group) got his training from Harvard and University of Washington. I have no reason to believe he is wrong in his diagnosis.

I have no one else to talk to about this. I am working only 3 hours a week to keep my job. I am on bed rest the next day because of the toll it takes on my body.

I am willing to hear any opinions you may have. I am stuck and I feel like a freak show. My husband doesn’t understand and I think he just wants his wife back. I don’t complain because he works 60 hours a week and he himself has undergone 2 open heart surgeries by the age of 25. His next surgery is next year and he will be 33. I want to be well so that I can be super strong after his surgery. Thanks for listening and I hope to trust you are a Medical Doctor.

I can handle pain, but the pressure of this is unbareable. I am 118 pounds now and feel bigger right now than I did before I delievered my son. I was at 172 pounds when I delivered. THat feeling that I am going to pop is scary. I am like a bad zit that needs to just go away. I am scared if I fall or something all this fluid is going to come out and drown us all. ha ha :)

Well that’s all my rambling for now. Hope I didn’t bore you.

Is there any way I can have the blood work released? I also agree about the scan like in Homa’s case. Dr. Liao said that wouldn’t need to be done and there was NO WAY I have insulinoma. None of the blood work indicated any abnormalities. Grrrrrrrrrrrrr I’m not making this up!!!! IF I were at least I would keep the hair on my head! :)
Toni

Thursday, 1st February 2007 at 6:58 pm

I am so glad I found this website. I am going inpatient next week to do the 72 hour test etc. to determine the cause of my almost daily hypoglycemic episodes.

My episodes have been going on for over three years (now that I think about it); however, I didn’t find a doctor who gave any concern to them until November 2006 when I went to an Endocrinologist associated with Vanderbilt Hospital in Nashville.

The following is a summary of my symptoms and experiences:

1. My blood sugar levels go as low as 27 and stay in the high 50’s and 60’s “on a good day.” Of course, my head feels as if I’m intoxicated and often feel “hung over” for many days.

2. I work 8-5 in an office and can barely make it through the day without wanting to take a nap. There are many days I have to take one or I feel like I’m going to fall out from exhaustion.

3. I have days when I am starving and want to eat every 2 hours. However, eating often doesn’t seem to keep the blood sugars at anywhere near a normal level.

4. Most recently I’ve been experiencing night sweats so bad that I will actually have sweat running down the middle of my back and chest. I wake up with my pajamas wet and damp. (Until 2 weeks ago I blamed this on pre-menopause as I am almost 47; however, at my annual exam in January I had labs done which indicated my hormone levels were normal.) I talked to the Endo who confirmed this was another symptom of hypoglycemic episodes.

5. I have a history of depression which is controlled by medication. (Genetic predisposition and some pretty poor life choices don’t help!) However, I find that I get so angry at times that I want to scream and will have to let whoever it is who has upset me know exactly what they’ve done to upset me. In doing so, I don’t spare ANY words. I’d describe them as more of honest outbursts than just plain hurtful ones. In any case, we all know that doesn’t get you very far in this life! Most people don’t like to hear what they are doing that is so wrong!

6. I have had a problem with blurred vision for the last several years. This hasn’t been attributed to the hypoglycemia by a doctor but I wonder if it could be.

I have undergone major abdominal surgery in the past 6 1/2 years and am really scared to find out whether I have in insulinoma because then I will have to make a decision to have it removed. I just don’t know if I can handle being cut again. I’m not scared of surgery and actually am a very good patient who is compliant and heals quickly but am tired of being the person who is ALWAYS having some kind of surgery.

I’d love some feedback from others regarding this post. No one around here understands what I’m going through and I feel they think I’m just exagerating my symptoms but if they only knew how bad I felt most days.

Just like now, I’m lightheaded and dizzy. I’m not feeling like I do when my sugar is low but feel this way sometimes. Go figure.

Thanks for letting me vent.
Brendan

Friday, 2nd February 2007 at 1:05 am

Toni,

Those symptoms sound very familiar. It’s miserable (and life changing) and it’s impossible to explain the severity to other people.

When I did the 72-hour test (which actually only took four hours to complete, as my blood sugar dropped from my post-breakfast 64 to 35 in 3 hours of inpatient care), and was succesfully diagnosed, my endocrinologist had a PICC line inserted into my arm with a glucose infusion. I had the PICC line all the way through surgery a month later, and while it was somewhat of a hassle, it kept my blood sugar at a stable level during the entirety of my post-diagnosis/pre-operative phase. I was lucky enough that my health insurance covered the whole thing, as they shipped me glucose every couple of days in huge boxes.

Oh, other tips that helped me: I bought a blood glucose test kit (like diabetics use), and tested my blood sugar levels every one to two hours. If I went below 60, I’d eat something that’d help raise my level without spiking it too high. Orange juice is a classic choice, of course, but I found some protein sources (like nuts) to be valuable as well.

I know it’s frightening to think about the surgery, but it can completely resolve the problem, and it’s life-threatening to just try to cope with a case that severe. I’m lucky that I didn’t get into a car accident or walk in front of a bus prior to understanding what was going on. My mental state is much improved, and perhaps it’ll have the same effect for you.

Good luck,

Brendan
Jon Mikel Iñarritu

Friday, 2nd February 2007 at 1:38 am

Dear Angie,

The start of enzyme replacement therapy depends in the type of procedure for insulinoma resection. Since insulinomas are small (usually <1.5 cm), usually single (only 10% are multiple and usually associated with MEN 1 syndrome) and usually benign, the first procedure to perform (if possible) is the enucleation of the tumor wich will return your funcionts as normal without need of oral pancreatic replacement therapy.

In some kinds of procedures (like Whipple procedure or total pancreatectomy -God forbid-) you should start ORAL pancreatic replacement therapy. In this cases you should take this replacement therapy.

Insulinomas are often on the surface of the pancreas. Most of this tumors have a lining around them that separates them from the pancreas.

Diazoxide adverse effects are,
*1% to 10% of patients will develop:
Hypotension, dizziness, nausea, vomiting and weakness.
*less than 1% of patients will develop:
Angina, anorexia, burning, cellulitis, cerebral infarction, constipation, extrapyramidal symptoms and development of abnormal facies with chronic oral use, flushing, headache, hirsutism, hyperglycemia, hyperuricemia, inhibition of labor, ketoacidosis, leukopenia, MI, pain, phlebitis upon extravasation, rash, seizure, sodium and water retention, tachycardia and thrombocytopenia.

I think that your new hair growth will fall as soon as you stop taking that drug.

This blog is just for educational purposes (patients and medstudents). I’m glad to help in anything.

Best of all with your surgery. Please let us know how was it.
Jon Mikel Iñarritu

Friday, 2nd February 2007 at 1:46 am

Dear Myriah,

You don’t bore me at all.

All this symptoms you have are consistent with insulinoma.

I would like to know what are the results of the bloodwork (insulin and C-peptide).

Maybe you could have high insulin levels when you have hypoclycemic episodes.

Why don’t you look for a second opinion?

Remember, It’s not normal at all to have hypoglycemic episodes and if you really don’t have insulinoma the differential diagnosis should be done with:
Jon Mikel Iñarritu

Friday, 2nd February 2007 at 1:59 am

Toni,

I agree with Brendan, your symptoms are consistent with insulinoma.

Remember that the symptom complex is due to autonomic nervous overactivity, that could be FATIGUE, WEAKNES, HUNGER, SWEATING, IRRITABILITY, CONFUSION, BLURRING OF VISION and DEPRESSION.

Please write us as soon as you get the results of the 72 hours fast test.
Homa

Friday, 2nd February 2007 at 1:17 pm

Dear Angie
Thank you very much for answering my question about the calcium fusion test. It eases my mind knowing that it is not that intrusive. I wanted to wish you luck on your upcoming surgery next week. Keep us posed as to how you are doing once you are feeling better.
Best of luck
Homa
Phil

Tuesday, 6th February 2007 at 6:04 am

Angie,

Presently my wife Susie is in UCSD Thornton Hospital in La Jolla, CA recovering from an insulinoma removal/pancreas resection surgery that took place last Friday Feb 2. Boy, I could write a book telling you about what we have been through the past year trying to diagnose her hypoglycemia! She is presently in the difficult phase of her post-op period, just having come off the pain medication. However she was walking around yesterday and I am happy to report that even though she hasn’t had anything to eat or drink since Friday morning (midnight Thursday), her blood sugar has remained in the 80 - 90 range. Pre-op, she would have been totally hypoglycemic (20 - 30 range) by later in the day on Friday.

Her hypoglycemia started last February with a couple of really strange episodes of behavior. However, we really noticed it for sure a few days later when, after getting off a ride at Disneyland, she was walking sideways and acting in a very bizarre manner. After taking her to the emergency room at a local hospital, they told us her blood glucose was down to 35. As she drank a sugary drink and a white bread sandwich, we could see her returning to her normal self. Her uncle, who was the formal Chief of Medical Services at Kaiser and a practicing physician for over 50 years, told us he suspected she might have an insulinoma (he only saw 2 cases of it in his entire career!!). However, for close to a year, she went from doctor to doctor, and each told her her blood chemistry tests simply indicated that either she was diabetic or had reactive hypoglycemia. In the meantime, she had several very scary episodes and a 20 lb weight gain, though she eats healthily and exercises regularly.

This all came to a head at the beginning of 2007 when on two consecutive days, she experienced episodes so bad that she wasn’t responding to anything we gave her to eat or drink. We had to call EMS two days in a row, they infused her with glucose and took her to the ER (her blood sugar readings on those days were 27 and 30). On the second day, they admitted her to the hospital. She was in two different hospitals for 2-1/2 weeks while they did three supervised fasts, a CAT scan and MRI. They finally found a 13 x 10 mm insulinoma on an endoscopy and she had the surgery last Friday. It was difficult for the surgeon to find it, but he did and my wife is finally on the road to recovery. There was a 10 day period (between diagnosis and surgery) in which she was discharged, had to use a glucose monitor and keep her blood sugar up. Like you, she was absolutely terrified about the surgery, but finally had it. She’s now in her difficult post-op period, but once she’s past that, she’ll be cured.

So keep your chin up and go bravely! You don’t want to live with this horrifying hypoglycemia stuff!!
Lacey

Saturday, 24th February 2007 at 9:29 pm

My mom has been reading this website every day, increduously, because she can’t believe that she has finally found somebody — more than one somebody — that has gone through what she has been going through for the past 12 years. She’s particularly jealous of Phil’s story about his wife, Susie — so good to hear she is doing well, by the way — because it sounds like the diagnosis and surgery has all happened relatively quickly. This hasn’t been the case for my mom.

For the past 12 years, doctors have peformed tests, suspected insulinoma, and yet have not been able to find the tumor. She has had three “72-hour fasts,” which is a funny name because it only takes her two or three hours to drop really low. (She does not have reactive hypoglycemia, as her sugar usually stays between 30-60.) The tests found that insulin levels remained high when glucose was low. This is why they think she has insulonoma, but they haven’t found a tumor. She has had MRIs, CTs, endoscopy, and an angiogram (she thinks that was when they were looking for a tumor?).

My mom has increasing trouble waking up, and my dad has made a habit of waking up in the middle of the night to make her drink something. Relatively often, she has episodes where we need to call the EMTs. She doesn’t have the energy to exercise (walking up a set of stairs drops her sugar so low that she has avoided exercise.) Strangely, she has only gained 15 pounds over the years, even though she eats constantly. And she only weighs 120 now (though she only weighed 105 before, even after having two kids. She’s 5′4″). My mom is 48 years old now.

She has been on diazoxide, on and off, since the beginning of all of this. It’s not working anymore for her. She’s wondering how long it’s supposed to work … ?

My mom kind of hopes there is insulinoma, if that means it can be removed. The tumors can be really tiny, she’s been told. But shouldn’t they have grown over time? She is not interested in having exploratory surgery, but even after all these years, we’re really hoping they find something so she can return to a normal life. After having so many seizures she has lost the ability to organize, plan, and create. Has anyone else experienced this?

Her blood sugar gets much lower during her menstrual cycle. Is this normal for insulinoma? And are there symptoms of insulinoma that are exclusive to insulinoma (as opposed to just too many pancreatic cells, like “hyperplasia”)? How common is hyperplasia? How big do insulinomas have to be in order to be seen?

Toni: My mom had night sweats, outbursts and blurred vision during the first couple of years, but no longer. How did your 72-hour fast go?

Angie: We hope you’re doing well.

Michelle: Did they ever find the tumor?

Everybody: My mom thinks it’s so important for people who have these rare cases to find each other like this, and to communicate. So please continue.
Brendan

Monday, 26th February 2007 at 12:03 am

Lacey,

Your mother’s symptoms sound very similar to what I was feeling - and all of the test results you’ve described are consistent with a possible insulinoma.

When using imaging tests to find it, you’re at the mercy of the analyst who reads the results. They have a protocol they’re told to follow, but it’s a rare enough tumor that not many have experience finding them. Ultimately, I had both an MRI and a CT when they were looking for mine. The CT scan finally showed it to their satisfaction, but my surgeon actually used the MRI result when planning the surgery - it showed up there, but the analyst missed it.

If they really can’t localize it with either of those methods, I think they typically fall back to ultrasound. I would highly recommend your mother consider the additional options, even if they’re surgical. if it’s an insulinoma, her life would be so much different if the tumor can be removed. My blood sugar went to normal levels immediately post-operative.

As for your question about “organizing, planning and creating,” that’s also very familiar. My job and home life were a wreck because of the mysterious, frequent, and unpredictable bouts of confusion and exhaustion. I’ve very fortunate that my wife was so supportive. I had incidents where I couldn’t even succesfully buy groceries.

Good luck to both of you…

Brendan
Angie

Wednesday, 28th February 2007 at 7:37 am

Hi Everyone!

I’m back! Three weeks after surgery and Im back on my computer - just!

The operation went well - the tumor was removed ‘easily’ according to my surgeon and I avoided having the dreaded whipple operation. This I think has really helped my mental outlook and I am so relieved not to have had that done.

I was in surgery altogether for 6 hours but this included being brought up to the ward. I had an epidural through out surgery and into the following two days - it failed to block after two days and was replaced by a morphine pca, (which was great!)

I had no real problems from the actual surgery, was ‘uncomfortable’ and ’sore’. It felt like an iron bar was resting across my stomache but not in any real pain! I did have problems with trapped air which was really painful and ended up with a water infection from my catheter. I developed a temperature of 39.7 which held up me going home but left hospital two weeks after the op. My blood sugars have been totally normal almost straight after the operation itself and I feel completely relieved its over and has been a success.

I’m now recovering at home and have more mobility than I expected, sleeping is uncomfortable. Laying flat was a problem as I couldnt sit up but as the days have gone passed I am stronger and able to roll up a lot better.

I was so afraid of having the surgery its the most frightening thing I have ever done but my doctors were brilliant and the care I received especially at first was excellent.

I’m still here, I’m recovering, I feel normal, looking forward to getting back on my feet and back into routines - I cant quite believe it yet!!

Anything I can do to help anyone or any questions, I want to help as I have been!

Good luck to all
Angie
peggy

Wednesday, 28th February 2007 at 1:08 pm

Hi Angie!
I am Lacey’s mom, Peggy. I’m so happy to hear that your surgery was successful and all hypoglycemic episodes are in your past. What a relief! And thank God you did not have to have the whipple procedure. I don’t know a lot about it but I assume the tumor would have to be in the right place in order to avoid that. I also wonder about the laparoscopic technique. Does the insulinoma have to be in the right place in order to have it done laparoscopically? Or is it more a matter of finding a doctor that has the experience?

I really do have a lot of questions. Some of them are keeping me from moving forward with this. I don’t have very good insurance and that is the reason it has gone on for so long. The good news is that our bodies are amazing in that my brain has learned to adapt to the low sugar. I hardly have any symptoms at all anymore. The bad news is of course I could fall to dangerously low levels at anytime without warning, which I do quite often.

Maybe Jon could answer some of these questions for me-like what are the chances of this not being an insulinoma, but something else like nesidioblastosis? Is that more common, or less?
And what is the average size of an insulinoma? 13×10mm seemed rather large.
Angie, how big was yours?

Phil, I hope your wife, Susie, is recovering well. I would like to hear more about how it went for her, since UCSD is somewhat in my area.

If I wasn’t hesitant to leave my e-mail address,(I was advised not to by my daughter) I would love to hear about other hospitals as well as doctors.

This is such a difficult disease for anyone to understand that has not personally gone through it. I am so grateful for the opportunity to discuss some of these issues with all of you.
Phil

Thursday, 1st March 2007 at 5:42 am

Hi Everyone,

Its been interesting reading some of the more recent postings, especially those of Lacey and Angie (Brendan - your’s were great too!). My wife Susie was the one who had the pancreas resection/insulinoma removal at UCSD Thornton Hospital on Feb 2. I thought I might respond to a couple of things.

Lacey - I have to tell you that Susie’s recovery has been no where near as quick as you might think it was. Tomorrow marks one month since the surgery, and she is no where near back to her normal health. Since her particular surgery was so difficult, she’s had to deal with an incredible amount of site drainage of digested fats and dead pancreatic fluid. They had such a hard time locating the actual insulinoma that they had to take out the part of the pancreas they thought it was in. The assistant surgeon told us that she thought the lead surgeon was “bold” and she wouldn’t have been able to locate the tumor on her own. So yes, even though it a little more than a year from her first hypoglycemic episode to resolution, its still been difficult. Her episodes during that year drove her nuts and upset her life so much, she told me she couldn’t understand how anyone could put up with it for that long, let alone 12 years!! Susie really thinks that your mom should get exploratory surgery if they can’t locate the tumor by the 72 hour fast or by more conventional imaging methods.

Angie - We are envious of how easily your surgery went and how well your recovery seems to be progressing! I can tell you, its been, and continues to be, a very difficult road to recovery for Susie, given how difficult her surgery was. You sound like you’re experiencing some of the same post-surgical issues, like the uncomfortability when sitting up. You’re like Susie was - she dreaded the surgery, but went through with it (eliminating the hypoglycemia), and looks forward to her full recovery in the next month or two.

Best of luck to you and to Lacey’s mom!!

Phil
Amanda

Thursday, 1st March 2007 at 11:38 am

Hi everyone,

I came across this site while researching insulinoma, and figured that I would join the pancreatic tumor club and leave a message. I’m a 23 year old female who was just diagnosed with insulinoma yesterday. I’m lucky in that it has been a really fast process. From reading some of your experiences, that does not sound like the norm. I started having serious hypoglycemic episodes about 5 months ago with all of the typical symptoms: confusion, dizziness, lack of coordination, blurred vision, etc. The best way I’ve been able to describe the episodes is feeling as if I’m drunk. Once I “come to” after eating or drinking something, I often have a blurred memory of the episode. Has anyone else experienced that?

Anyway, I scheduled an appointment last week at Sansum Clinic in Santa Barbara (GREAT place!) to try to figure out what’s been going on. After fasting for 12 hours and having blood work done, they saw that my blood sugar was very low (37) but that my insulin was high. Apparently, that is a classic sign of insulinoma. I met with an endocrinologist two days ago, and he scheduled an emergency CT scan for yesterday. I met with the endocrinologist again after the scan, and he showed me that I do have a small, single tumor right on my pancreas, and presto! I have insulinoma.

I’ll be meeting with a surgeon in the next week or so to start getting ready for the next step. I’m not too worried about surgery, but am terrified about what kind of scar I’ll end up with. Can anybody tell me what kind of souvenir they were left with?

It has been great reading everybody’s stories and experiences with this. We are a rare bunch!

Thanks,
Amanda
Amanda

Thursday, 1st March 2007 at 7:04 pm

Hi again,

I wanted to say a quick thanks to Myriah for posting the link about the specialist at Stanford. I actually have an appointment scheduled with him next week! I’m glad to have found somebody that has a lot of experience with this surgery. When only 1-4 people out of a million get insulinoma, it is hard to find a surgeon with specific experience. For those of you who missed the link, here it is again:

http://cancer.stanford.edu/features/patient_care_news/insulinoma.html

I will keep you posted with how everything goes. Hope all is going well!
Amanda
Jon Mikel Iñarritu

Thursday, 1st March 2007 at 11:40 pm

Angie: It’s awesome to have you right back!!! I told you that everything will be ok.

Lacey and Peggy (Lacey’s mom): Welcome to this forum. I hope that this page could help you in the hard way of diagnosis and treatment of insulinoma.

Phil: Please give Susie my best wishes. I know she will be fine.

Amanda: Best of all in this “adventure” and thank you for sharing again the link. I wish you the best of all and please come back again and post about your experiences.
Peggy

Friday, 2nd March 2007 at 12:34 pm

Amanda,

Welcome to the club! You’re my daughters age, I think you are our youngest member. That’s a good thing because you will come through surgery well. Hopefully, your case will allow and your surgeon will have the experience to perform the laparoscopic procedure as they did on Brendan. What a difference it would make in recovery time, and - with the souvenir you were left with! It sounds like Stanford is that place for you. Isn’t it great to have this information available. I’m glad that your diagnosis came relatively quick. Take it from me, this is not something you would want to deal with for very long. I know what you mean about feeling “drunk” and having a blurred memory of the whole thing. Very common, although frusturating. Those episodes are what you want to avoid. (hopefully you have a glucose monitor) There has to be a lot of brain cells dying, it adds up after a while! Take it from someone who can tell. :)

I’m glad you’re on the right track and I trust that things will go well for you. Your attitude is an inspiration.

Angie,
you’re still on our hearts. Thanks for starting the corespondence, hope you’re back in the “routine” soon.

Phil and Susie,
I’m sorry the recovery period is so difficult for you. I’m sure it will all be worth it and am feeling more “bold” in pursuing my treatment. Thanks.

Brendan,
if it weren’t for your experience, I would not have the nerve to start all over. Thanks.

Jon,
awesome thing you’re doing with this publication. Thank you!

Everyone,
Thanks for the encouragement!

Peggy
Brendan

Friday, 2nd March 2007 at 1:02 pm

Amanda:

I definitely had a similar experience with my memories of my hypoglycemic episodes. When I think back to them, it’s as though it’s a slide show where I remember a single image from every ten minutes of actual time. It’s fantastic that you were diagnosed so accurately. I was misdiagnosed with temporal lobe epilepsy for nearly two years prior to finding the endocrinologist who solved the mystery.

I have four scars from the laparoscopic surgery, and my experience is apparently typical. They made an incision for a drain, two for retractors, and one for the laparoscope itself. Each is less than an inch long, and they’re scattered around the center of my abdomen. If you used compass directions, there’s one NW of my belly button, one NE of it, one E, and one SE. Apparently they fade more over time (particularly if you use vitamin E cream, or is it A? I don’t recall).

Brendan
Angie

Friday, 2nd March 2007 at 3:31 pm

Dear All

Im so glad I found this page on the web and feel quite proud that I started it!!!! Thank you to Jon for creating it!! Its just been so good to read about other people and finding information that was any use!

I really look forward to finding new messages and hope that those of us who gradually get further down the line can be of help to the others.

I actually left my house yesterday to walk down the road to a friends house - very slowly I might add - it wasnt far but by the time I came back I was very sore. However today I feel better and easier so I think thats a clue to recovering, build up very gradually but do something every day if you can. I sat and rested all last week and didnt really feel any progress. Its all new to me. I realised today that I feel ‘normal’ but without tablets! I was thinking I didnt feel much different but then remembered that that was because the diazoxide was helping to stabilize me most of the time. Im looking forward to feeling more energetic than I have for years!!!

Peggy

I think that the laparoscopic option comes with both a doctor with the experience and a tumor in the right place although I have heard that it is sometimes easier for them as they work under high magnification.

My body adapted to the low blood sugar over the years and when the nurses were running round waving food at me cos my levels were so low I was sitting there wondering what the fuss was about - I know now what they were worried about. In UK we seem to measure the blood sugar differently, usual blood sugars are 4 to 6 and low is anything under 2.5 to 3. Under 1 and you are heading for a coma if not already in one!! My lowest was 1.7 at work when I felt light headed! Most of my weekends my levels were 2.3. I believe I have suffered with this for years but cant really put an exact time on it - I just thought it was me and that i had odd turns!

My tumor was about 1.3 cm and that seems to be an average size. I know many are smaller but still cause such awful symptoms.

Amanda

My ‘wound’ is about 8 -9 inches across and an inch above my navel, slightly to the right where they did the work on the head of the pancreas. It was subcutaneously stitched and taped on top which is fantastic as I have no stitch marks and when healed will hopefully look just like a crease across my stomach! Another lady I met in hospital had had a tumor removed from the tail but hers had been stitched and was more to the left. It seems each doctor has his own style! My drain is causing more trouble healing as here they just leave it open to heal outwards and upwards! As it was a half inch tube it was quite worrying having a hole into my abdomen! It is slowly healing now and I dont think that will be too bad either.

Best Wishes to all!
Angie
Maria

Sunday, 4th March 2007 at 9:51 pm

Hello all -

Well I too have been diagnosed with insulinoma - 2 weeks ago. I have a 2.5 cm insulinoma by the head/neck area. I am scheduled for surgery on Thursday. I did the blood test - which took about 3 hours since I hit a low every day around 10 a.m., next to CT scan, which they could see the tumor since it is so large, then a biopsey procedure last week where they place the ultrasound down my throat to get a better look and look for cancer. So, that went fine with good news and they scheduled my surgery for this week. I have been told that I should expect to be in the hospital for around 5 to 7 days or so, but they wrote me out of work for 6 weeks. I don’t meet with the surgeon until Wednesday so not sure how they plan on doing my surgery yet. I hope it is easy and goes well. This is my first surgery - I am 31 years old. Thanks for the website and I have been reading it for several weeks now. Glad everyone is doing well. I have had this for about 2 years or so, with lows in the 30s and 40s everyday. Is my tumor larger than most or has anyone heard of one that big? Do you think they will remove it laparoscopic or not? Thanks again and wish me luck!
Peggy

Tuesday, 6th March 2007 at 7:42 pm

Hi Maria,

I’m glad you found us. I don’t know where you’re having your surgery but I’m sure they will do whatever procedure is best for your situation. Everyone hasn’t said how large their tumors were, but I would be interested to know also. 2.5 cm seems big though. Good thing, since that made it easier to locate and they will probably be able to remove it easier as well. I will be thinking about you on Thursday. Hope everything goes well, be sure and let us know.

Michelle and Toni…I’m real curious to know how you both are doing!!
Phil

Wednesday, 7th March 2007 at 12:34 am

Angie,

Susie’s husband here again - I wanted to ask you a question. When exactly did you have your surgery? I think it was around the same time Susie did (Feb 2). What have been your recovery experiences so far?

The reason I’m asking is that as I have mentioned in other posts, its been, and continues to be, a very difficult post-surgical recovery for my wife. As I mentioned, she’s had a lot of drainage of digested fats and pancreatic fluid from her surgical site. It has slowed down significantly in the past week, but her two drainage bags are really chapping her skin and she has been in a great deal of pain. The surgeon had to be very aggressive in his surgery in order to remove the insulinoma (he had to remove a good chunk of the pancreas near its head) and I think that has led to the drainage. They prescribed a statin drug that I have to start injecting her with 3x / day to dry up the drainage. I was wondering if anyone else was having some of the same post-surgical complications. She has also been having a very rough time with the mental and emotional impacts from this 2 month ordeal of diagnosis, pre-surgical wait, and post-surgical recovery. It’s been very hard on the whole family since the beginning of this year.

Jon Mikel,

Thank you for your kind words of encouragement, and your terrific site. It has been comforting to connect with others that have also had to deal with the effects of hypoglycemia and insulinomas. It’s good to know we’re not alone.

Peggy,

I would highly recommend Dr AR Moossa and his assistant, Dr Jackie Tracey, at UCSD Thornton Hospital in La Jolla, CA. Dr Moossa has over 40 years of surgical experience, was the Dean of the UCSD School of Surgery for over 20 years, has authored a standard surgical textbook (in its 15th printing) and over 300 articles. He specializes in surgery of the pancreas. He might initially strike you as a crusty old fellow, but he is actually a very kind, highly intelligent, often funny man. If you haven’t selected a surgeon, please keep him in mind. Also, Thornton Hospital is (for a hospital) a very nice place. When you enter the lobby, you’d think you were in a Hyatt Hotel or something like that. If you have to spend a couple of weeks recuperating in a hospital, that’s probably the place to be. Let me know if you have any questions.
Brendan

Wednesday, 7th March 2007 at 12:58 am

Maria,

If it’s possible, I would highly recommend laparoscopy. My recovery time was very quick - I was 30 at the time of the surgery, and I was in the hospital for a total of three and a half days. I had a drain in my side for an additional three, but that was the entirety of it. I certainly had some abdominal pain and was told to avoid heavy lifting for a month, but I was able to return to work in less than two weeks. I think it very much depends on the location of the tumor, and whether it can be enucleated (and whether or not the surgeon is experience with laparoscopy).

It can be difficult to find surgeons with experience removing insulinomas because they’re so infrequent. Without going to a specialty clinic like Mayo, it’s very hit or miss. My surgeon, Dr. Andrew Bourne, was based in Eugene, OR, but has now moved to a surgical practice near the Northern California / Oregon border. He was very good, and had done six of them prior to me, but I’m sure there are good options elsewhere.

Brendan
Angie

Wednesday, 7th March 2007 at 5:22 am

Phil

I had my surgery on the 6th Feb so its just 4 weeks. Although the surgeon told me it was more likely I would have to have a resection I was very lucky and it didn’t come to that. My tumor was in the head like Susies and it was near a tract so they were worried the tract may have been breached. I only had one drain in the end and very little in comparison came out. I know I was given an anti-seepage drug twice a day by injection to start with but that stopped after 10 days or so.

I have increasing mobility and am cutting down my pain killers slowly at the moment but I am still far from back to normal. I am also having a lot of stomach pains and I seem to have a very sensitive stomach in regard to food. I don’t know if this is to do with the diet or lack of it in hospital as really they didnt touch anything other than the pancreas during surgery.
Im still very uncomfortable and sleeping is still far from easy.

Are the doctors concerned about the amount of drainage your wife is suffering?

I presume that after such an aggressive resection as you described Susie must have had quite a few ‘joins’ and ‘replumbing’ work done. This is what actually frightened me so much. My imagination would have run wild about what they had actually done and I know it would have caused me several mental problems as Im like that. My consultant explained that the resection would enable him to do the safest operation under my circumstances to stop any leekage from the pancreas. However knowing that he would be sewing the pancreas into the actual intestine and rejoining up my stomach would have knocked me for six.

Do you know exactly what they did?

I seem to have been very lucky but can imagine what your wife is going through. She will probably hit big milestones soon and suddenly make huge improvements especially if the drains can be taken out. I know when I eventually got rid of mine it was odd at first that I wasnt still carrying it around.

I really wish her well and my thoughts are with you both - hope to hear things improve soon!

Angie

Just a footnote - My consultant in London has done 37 insulinomas over the years, I think that everyone in the Uk with this is actually sent to him as the specialist here. He was very nonchalant about it and gave me a lot of confidence that this was nothing to worry about! I did tho!!!

The statistics show that success rate is considerably better with an experienced surgeon which of course is common sense.
With hindsight when looking for a surgeon I think I would ask him about how he would deal with the complications that could arise and how many different outcomes he had had.

Best wishes to all Im off to take my painkillers!!!
Phil

Wednesday, 7th March 2007 at 8:32 am

Angie,

Thanks so much for the very quick response. I entered my latest post before I went to bed last night, and here I am at 6 am reading your response! I think you’re in the UK (I think about 8 hours ahead of the US West coast), so that probably explains it. Ah, the miracles of the Internet!

I’m not sure exactly what they did when they went in, or what kind of “replumbing” they did. All I know is that the insulinoma was very small (13 x 10 mm), and if he hadn’t taken such aggressive procedures, they wouldn’t have been able to take it out, because they had a very difficult time even locating it. It showed up well in the endoscopy ultrasound, but once they got in there, it was very, very hard to find. Actually I think what they did was to take out the part of the pancreas they thought the insulinoma was located in, and the surgeon indicated it was a much greater amount than they had anticipated. All I know is that the assistant surgeon said Susie was very lucky that Dr Moossa has done it, because she and the original surgeon that was scheduled to do it would not have been able to locate it. I can’t imagine what it would have been like to have been opened up and STILL have hypoglycemia because they wouldn’t have been able to locate the tumor! What a nightmare scenario that would have been.

Of course, they’ve been concerned about the drainage, but they are confident it will stop. When it first started draining, we were draining 150 - 200 ml every couple of hours, but it has slowed down to about 50 - 60 ml every 6 hours or so. I have to ask you - what were your experiences with injecting the anti-seepage drug? Did you do it yourself, or have someone do it for you? Was it painful? How often and how long did you do it for (I think you said about 10 days)? Did it help you “dry up”? She is absolutely terrified to do it, because they’d like me to administer them (she seems to lack confidence that I can do it - imagine!!), and is concerned about side effects. They require subcutaneous injection with a very fine needle (much like insulin shots taken by a diabetic), so it doesn’t seem like it would hurt because it isn’t intravenous. Also, the surgeon told my wife to try not to worry about possible side effects; he likens it to be scared of walking into a building worrying about if the roof will fall. He says that pharmacists and drug companies have to disclose all possible side effects simply to protect themselves legally, but in reality, she is unlikely to experience few if any of them.

I think she’ll feel much better when they remove the bags because they are now really irritating her skin. We’re going back to the hospital tomorrow for followup on this - I think they’ll probably remove the bags, have me change surgical dressings again (because the flow has fallen so much) and get her going on the statin drug to dry her up.

The big issue here is that my wife has always been extremely excitable emotionally about her health issues (its probably genetic - her paternal grandmother and her mother were also like that). I wish there were a way to calm her down about the whole thing. She is getting better, and will make a full recovery, but its hard on her now. I try to reassure her that everything will get better, but she gets very distraught and tired of the whole thing at times.

Brendan,

Yes laparscopy is the way to go if the insulinoma is easily detectable and can be enuncleated if its on the surface of the pancreas. However, in cases like my wife’s, where the insulinoma is really hard to find, laparscopy is virtually impossible to do to successfully remove such small, hidden-away insulinomas. That pancreas is really tucked away below everything else like the stomach and intestines. I sure wish my wife could have had it, and avoided the long recovery, but they simply wouldn’t have been able to locate and find it. Best of luck to you.
Angie

Saturday, 10th March 2007 at 6:31 am

Phil
I love the internet for exactly the reasons you said - a few years ago how could we possibly imagine having such conversations across the world - I love it!!!

The thought of going through this and them not having found it is quite awful or even if you knew you’d have to opened up again at a later date and go through it all again is very frightening!

When I saw the Registrar before surgery he was going through all the complications and as a final point he said ‘of course there is a chance it will be cancerous and we wont be able to remove it but you’ll have a few years left’!!!! I thought well thanks for that!! im sure he meant well and I took it lightly but hey how about dropping a bomb!!

If the statin drug is the same as I had it is a very fine needle and was painless to administer. It was given to me straight after surgery for about 10 days. The reason im not too sure is because I was having injections to thin my blood twice a day. These really hurt and left bruises and lumps, and carried on until I left hospital.

I dont think I could inject myself but a friend, from this site, had to inject herself instead of taking diazoxide and she was given ‘training’ and managed it. She said if you can do it once you can do it again. I imagine its like sticking a sewing needle into your finger to get rid of a splinter!

Tell Susie that I am a very down to earth, sensible, objective person normally but where my health was concerned in hospital I was neurotic. I worried about everything! I had a two panic attacks and hyperventilated. I got myself worked up after being told I had a very low heart rate and they were concerned so I thought I was going to fade away in the night. I had terrible trapped wind one night and the nurse offered me an ECG at 3 am. I got so anxious one night that I had nerves twitching all over my body and convinced myself I had a neuro disease!! I suppose a lot of this is night fears but its very real at the time and you need reassuring with so many things as you dont know what the doctors know.

Hopefully she will be able to laugh at all this in a few months time. Major surgery to this extreme is more than traumatic and its only natural to worry when you think something isnt right. I do think Im better when I know everything possible to know but then you can worry for no reason. At the end of the day if shes worried so what if the doctor thinks she is neurotic its your peace of mind and your body not theirs and its happening to you not them!!! Ask everything, bring up all your worries, tell them how you feel however silly. Peace of mind is worth millions!! I did!!!

Im finding my stomach pains really tiring and at times it feels like my insides are falling out, I suppose thats because of the stomach muscles being weak. That and being unable to sleep properly at the moment is getting me down but it can only get better - unless ive got some terrible intestine complication, see!- I am joking!!! Its so easy to worry when we arent doctors!

Hope you got on well at the hospital and Susie feels better soon. I think its along road to recovery but the hypos are gone!!!

Best Wishes

Angie
Phil

Saturday, 10th March 2007 at 7:23 am

Angie,

What a terrific post and response! I would think you were Susie from what you told me in parts of your email! Its really early here as I read it (5 am), but I know Susie will love it once she’s up and has read it. You two are kindred spirits, given what you are experiencing right now in your post-surgical period and your mental makeup about your health and recovery!

Its very interesting about Susie’s interactions with her surgeons. They both give Susie a hard time about her extreme anxiety about everything. Dr Tracey (a woman) teases her a lot but has compassion for her misery. Dr Moossa, the head surgeon, is a much older man and though he has compassion, he gets very annoyed by her complaining, and doesn’t have too much tolerance for it. My wife has a very ambivalent relationship with him, but I always remind her that she should thank God he did the surgery because the insulinoma was so hard to locate; Dr Tracey said that she wouldn’t have been able to locate it. BTW - Dr Moossa got his university degree and initial medical training at the University of Liverpool in the 60s, so he is a countryman of yours.

We started Susie on the statin injections a couple of days ago, and like you said, the very fine needle doesn’t hurt going in (just a little tiny prick at times). The surgeons removed one of the drainage bags that was really bothering her a couple of days ago, and I can already see that the amounts collected by the remaining bag have fallen quite a bit. They were down to 50 - 60 ml every 6 - 12 hours the past few days, but when I emptied her bag yesterday, the amount collected was hardly measurable. We’re supposed to do the injection 3x/day for 2 weeks, so I really think they are going to help quite a bit.

Take care and keep us posted on your progress. It is amazing how people from around the world can communicate so easily now via the Internet!

Best wishes too!

Phil and Susie
Phil

Saturday, 10th March 2007 at 8:49 am

Angie,

Susie really liked your post - like I said, I think you two are indeed kindred spirits. She wanted to know if it would be possible to call you on the telephone. Our email is philsuzy@san.rr.com - perhaps you could email us?

Thanks,

Phil
Debra

Monday, 12th March 2007 at 9:16 am

Hello Everyone!

I was so thankful to finally read about other live humans afflected with insulinomas. I too had an insulinoma removed in September 2004. I wonder how long I had the insulinoma. I had gained around 50 pounds in the last 10 years. I was fairly thin in high school, but have seen a steady climb over the years. Did anyone else gain weight due to their insulinomas? Also…I had my first child at age 35. Minutes after delivering her, I had my first super low blood sugar (around 32.) I may have had several lows, but wasn’t measuring until I was diagnosed with “of all things” gestational diabetes during my last trimester of pregnancy. I am probably one of the worst candidates to get an insulinoma because Type 2 Diabetes runs in my family. I had the insulin resistance before, with and after the tumor. I had a pancreatic resection - they removed around 1/4 of the tail of my pancreas due to a 2.5 cm tumour. I was insulin dependent after the surgery. My incision is roughly 8 inches long above my belly button. I had an epidural for 3 days and was out of the hospital in 5 days. I don’t have lows now, and am diabetic. I take oral Metformin (to control high blood sugars) and give myself 1 injection in the evening (Humilin N-long acting insulin.) I am interested in possibly having a second child. Has anyone had a child after surgery. I am worried that the insulinoma will return. Especially because my extreme lows came on shortly after the birth of our daughter. Most doctors say it shouldn’t, but noone knows for sure. Did anyone have more than 1 tumor? I have read that multiple tumors can appear…even without MENS..just as insulinomas? I also fear that the diabetes at age 38 may also be a complication. Sorry I am just rambling on…I am an elementary school teacher and my students will be coming in anytime. Please everyone share experiences!

Thank you.

Deb from Nebraska

P.S.-It took my doctors 6 months to find the tumor. I had 2 hosptial fasts, CAT scans, MRI’s, ultrasounds, and finally with a angiogram with calcium stimulation, they thought that it was an insulinoma due to lab results. However, noone actually saw the tumor. It was my surgeon who located it during the actual surgery.
Amanda

Monday, 12th March 2007 at 12:14 pm

Hi again everyone!

It has been great reading updates on everyone and hearing how things are going. I have met a few milestones in the past couple of weeks. Actually, I am about to head up to Stanford Hospital to have surgery done tomorrow by Dr. Norton. I met with him on Friday and he explained that my tumor is about 2cm and is located on the head of my pancreas. Because of its location on the head, he is unable to perform laporoscopy because it is too dangerous. So, he’ll be performing an open surgery. Scarey! I am confident in his abilities and am sure that all will go smoothly. He expects that I’ll be in the hospital for about a week, but I’ll be sure to update everybody on how I’m doing as soon as I’m able to. I will be thinking good thoughts of you all and would appreciate if you’d do the same for me.

Take care and stay strong!
Amanda
Debra

Monday, 12th March 2007 at 12:42 pm

Amanda,

I just read that you are having surgery tomorrow. I will be praying for you and for your doctors. I’m sure you will have a speedy recovery. I had similiar surgery on the tail of my pancreas and I’m here if you have any questions.

Take Care and God Bless,

Deb
Phil

Monday, 12th March 2007 at 3:57 pm

Amanda,

The very best of luck to you on your surgery tomorrow. Your surgeon is right - my wife Susie’s insulinoma was on the head of her pancreas too, so laproscopy was out of the question. I think it can only be performed if its elsewhere on the surface of the pancreas, and can be enucleated. Susie’s much smaller (13 x 10 mm) than yours, and the surgeon had a hard time locating it, so as I mentioned in previous posts, he had to be pretty aggressive and “bold” about taking out a bit larger piece of the pancreas to get it out. She’s had a lot of draining that we’ve had to deal with the last three weeks, but she’s taking a statin drug so it is tapering off quite a bit in volume now. I’m no medical expert by any means, but it sounds like your insulinoma is much bigger so it shouldn’t be nearly as difficult to locate. The week long stay in the hospital sounds right, though Susie was there for two weeks, mostly due to some of the issues that came up in her particular case. Fortunately, the insulinoma and the hypoglycemia are totally gone (Good Riddance!!).

I’m sure you’ll come through everything with flying colors - best of luck!!

Phil
Peggy

Monday, 12th March 2007 at 6:50 pm

Hello,

Amanda,we will be thinking about you.

Hi Debra, so is the diabetes a direct result of the pancreatic resection? Seems like it would be, but didn’t you have it before you were diagnosed? I’d also like to know about the calcium stimulation, they found the tumor through the angiogram. But they couldn’t see it, is that right?
I remember my first serious hypo episode was shortly after the birth of my daughter. Strange.

Wouldn’t it be great if we could all find something we had in common that could explain this unusual disease…lets see, I use to be a health nut before I realized what was wrong with me. Lots of carrot/beet juice. I had a couple abdominal surgeries..lots of x-rays. Anyone else?

Brenden, thanks for the info on doctors, Thorton Hospital sounds rather nice.

My mother happens to have some pancreatic trouble right now,
so I asked her doctor how much experience he’s had with insulinomas. He’s removed 50! And He’s the only one in our area that can do them laparoscopically. That sounded promising, the trick will be to get my insurance to send me to him. And of course they still have to find it! I’ll have to repeat all the MRI and CT scans and have another endos-
copy. So that’s where I am right now.

God’s best to everyone!
Peggy
Debra

Monday, 12th March 2007 at 9:34 pm

Peggy,

Thank you for your reply. I only had gestational diabetes (that I know of) before the pancreatic resection. However, with my Mom, uncle, grandfather, and a cousin having diabetes, I have a feeling Type 2 Diabetes would have been in my near future (even without the insulinoma.) However…, looking back, my weight gain has been on a steady climb since college. I do believe that I may have had the insulinoma for years, but I never really had any super lows until the birth of my daughter. Also, when my gestational diabetes was diagnosed in January of 2004, I began logging my blood sugars. I did have several lows (in the 50’s) when pregnant (usually in the morning) but didn’t drop into the 30’s until after her delivery. (And I mean literally 5 minutes after her delivery.)

I like your idea of putting our heads together to try to explain this unusual disease.

Also, since having the surgery (which was my first surgery, other than Laser Eye to correct a stigmatism) I have been diagnosed with other problems:

1. Gallbladder Problems (diagnosed Biliary Dyskinesia after a HIDA scan) means no stones in gallbladder, but it does not process properly-leaving me with pain when it has spasms.

2. Tumour located in my Thyroid (I had to have a Thyroid Needle Biopsy) Thankfully, it was benign.

3. I had severe hives and even on one occasion, I had severe swelling of my face. Doctors did tests and found virtually no allergies.

4. When Doctors were completing an MRI to check my pancreatic function after surgery- when I began having the Gallbladder troubles, they also spotted a Hemangioma (a usually benign tumor on my liver.) My surgeon who completed my Pancreatic Resection also documented this on my chart, but didn’t mention it to me after surgery. My next door neighbor (who is a doctor) said that the only reason to remove them is it they continue to grow or cause pain.

5. Also, I am very fair and have had many sunburns in my lifetime. However, in the past 2 years, I have had several moles turn out to be a dysplastic type. One required an additional excision to examine the tissue further.

6. I began having the sensation that something was stuck in my throat at times. Also when eating raw carrots, or bread, I would get the sensation that food was stuck in my throat and would need to drink liquid to prevent choking. I had a Barium Swallow which diagnosed an Esophageal Ring. They told me it was OK for now, but that it may need dilated if it continues to cause any problems. AND LASTLY…

7. I had trouble conceiving. I have several small cysts in my ovaries, and was diagnosed with a Septate Uterus (heart shaped uterus) and took Clomid 1 month before conceiving.

I guess what I’m getting at is…I have literally fallen apart (so to speak) since having the insulinoma removed. I know I’m 38 and not as young as before, but I didn’t have any health issues (other than difficulty conceiving) before the surgery. Anyone else experiencing issues after their insulinomas were removed?

I read that people who have high carb diets are more likely to develop insulinomas. I have always been a carb freak, so quite possibly there is some truth to this.

My surgeon had only removed 2 previous insulinomas in his career. One of his patient’s tumor reoccurred much later in life. Anyone else hear of them reappearing?

Peggy, how long ago did you have your daughter? Have you been having trouble ever since? MRI’s and CAT scans were not sucessful in locating my tumor. When the angiogram was completed, it was only when they injected the calcium into the vessels into the tail of my pancreas did the insulin levels raise rapidly and at high levels of output. So, no doctors actually saw my tumor, they just suspected that it was in the tail due to my levels. This is why I had to have exploratory surgery to find and remove it.

Just curious, are you working with your low blood sugars? I had taught first grade for 15 years before having my daughter and wasn’t able to return to work until November 2004 (my surgery was on September 24, 2004.) However, now I am exhausted all the time working full time. I am considering staying home with my daughter next year.

I hope that doctors can locate and remove your tumor laparoscopically. It sounds promising since he has removed 50! That is amazing! It kind of makes me think that the odds of 4 in a million must be higher. Best of luck to you Peggy. I’ll keep you in my prayers.

Deb
Peggy

Wednesday, 14th March 2007 at 9:43 am

Debra,

You sure have beeen through it! I worked at my daughters school for 10 years. They actually hired me with my condition. It’s great to work at a place when you know they accept you, however wierd you get. Teachers would bring me sugar all the time. We got a new principal last year, and my doctor said the stress was too much for my sugar, so I quit. My daughter is 15, and yes I’ve been having trouble ever since. If I were you I’d stay home with my daughter, it goes so incredibly fast. My older daughter just moved out of state a couple of weekends ago.

Funny, the doctor just called to tell me my sugar is a little low…oh, really? And I am low in iron. That explains my exhaustion. Maybe it’s something simple like that for you Debra.

The really bad news is my insurance won’t send me to that doctor with all the experience. I’m not surprised. I guess I’ll look into UCLA or USC. (contracted hosp.) Does anyone out there have any suggestions for me?

Phil,
I meant to thank YOU for the info on Thorton Hosp doctors.
I guess I’ll go where they tell me.
Amanda

Friday, 16th March 2007 at 11:52 am

Well hello everyone!

Before you get too far into reading this, let me apologize for any bad spelling! It is hard to be too articulate when you’ve just had surgery!

I am 4 days post-op and am feeling pretty decent. I had my surgery Tuesday morning and it lasted approximately 4 hours. I ended up with an incision that is probably about 7 inches long across my belly, in a curved shape above my belly button. The surgeon said that he tried to keep it as small as possible, but had to go fairly large due to the size and location of the tumor. No whipple was necessary, just a normal enucleation.

I hate to say this because I don’t want to scare anyone, but I was in the most excruisiating pain as I woke up immediately after surgery. I could barely move from the pain, but they had that under control after a couple of hours. That was definitely the worst part.

My progress has been going fairly quickly. I got up for a short walk on Wednesday and was put on solid foods the same day. I haven’t had much luck eating the normal diet, so I’ve been mainly sticking with jello and juices. Yum. My stomach has been pretty tender and I’ve been feeling a little bit queezy. I have been sleeping a ton, but I figure that is largely due to the medications they have me on.

Immediately after the surgery, I had an epidural that was removed yesterday. I’m now on Percoset, of which I take 2 every 6 hours. Right now, the thing that is the hardest to deal with is the discomfort in my stomache. I would love to be able to eat something, but I just don’t think I can. I feel a little weak and shakey from not eating, so I am hoping it will pass soon.

Right now, I’m sitting in the guest waiting area to use the computers. I’m wearing my fancy hospital gown, IV pole and cathedar attached. I guess that you can’t have any shame when you’re recovering!

Thanks so much for all of the kind words prior to my surgery. It really helped me get through everything! Hope all is well with everybody.

Amanda
Angie

Friday, 16th March 2007 at 12:09 pm

Amanda

Your message has just come through so Im quickly replying… Try and eat something regularly even if its a little as it really helps the stomach pain. I found the days I couldnt eat much the pain got worse but gradually as you eat a bit more solid food it helps to “get things moving”! I tried toast to start with!! I did live on custard for quite a few days!

Stomach pain has actually been the worst tcause of pain throughout all my recovery so far. Even last week which was 4 weeks plus I had awful pains but they have eased this week.

I wonder why your epidural wasnt already set up during the op? Mine failed after two days so I cant imagine the pain you were in when you woke!

Are the hospital gowns as good there as they are here in the Uk, I had the surgical stockings on too which were so attractive!!!

Good luck keep us informed, dont worry someone is here ready to reply!!

Angie
Michelle

Friday, 16th March 2007 at 3:59 pm

Hello Everyone,

Sorry for taking so long to update you all. I came to Johns Hopkins in Baltimore city to localize the tumour which they did in both the Endoscopic Ultrasound (EUS) as well as a CT Scan with contrasts. They said it was located on the middle towards the tail of my pancreas and was 2 cm. The surgeon’s fear was that is was on top of the pancreatic duct and that it was within the organ which would mean he wouldn’t be able to enucleate it and would have to do a distal pancreatectomy (remove the tail portion of the pancreas) and splenectomy (remove the spleen). I am thankful to report that my surgery went well on Monday, March 5th and lasted approximately 3 hours (total of 4.5hrs once I was out of recovery). They were able to perfrom the surgery laproscopically and hand assisted, so I have 4 port holes, the drain in my side and an incision about 3 inches long below by breast bone. The pain was really bad when I woke up in the recovery room and once they tried a few different pain killers to find the right one it slowly subsided. I have to say that the worst pain was the trapped gas from blowing up my stomach. This was excruciating especially since the pain killers didn’t help that. I have also been having terrible back pain which they have told me is normal as the pancreas wraps around the back as well as the front of the abdomen. I was standing the next day and then walking very slowly, hunched back, the following day. They discharged me from the hospital within 5 days after the procedure and I am now in a nearby short term apartment rental. It has now been 11 days since the surgery and the pain is getting better day by day. I still can’t stand up straight or get out of bed on my own, but I am getting more mobile each day.

For those of you who will need a JP Drain (attached to your pancreas and extending outside your stomach), my experience is that the fluids start out bloody in color, and then turn more urine colored and eventually start to thicken and may clog the drain with blood. It startled me because the sheet I went home with said to notify your doctor right away if it turns straw like or bloody. I called the hospital and a nurse said it sounded like I had an internal infection, but after speaking with my surgeon he assured me that this is all quite normal and what they want to see as the fluids slow down.

I saw the surgeon yesterday in the hopes of getting my drain out, but he wants to wait until the fluids decrease to about 20cc a day. I am going back to see him on Monday, March 19th to hopefully get it out. He then wants to do another abdominal scan before I go home.

I must say that John Hopkins Hopsital has been fantastic. I am from Bermuda and was researching the best place to come. It isn’t readily advertisied, but Johns Hopkins does the most pancreatic surgery than anywhere else in the world and I would highly recommend them.

Thank you Peggy for remembering me and for asking how I am doing.

Everyone’s updates have been great. For those that still don’t feel too great I wish you a fast recovery and for those that are doing better, I am happy for you.

Michelle
Peggy

Sunday, 18th March 2007 at 3:49 am

Amanda and Michelle, welcome back!

I have been having some real lows lately. 37 today and yesterday and it’s been affecting me mentally. But I am so glad to hear you’re both out of surgery. How have your blood sugars been? It will be interesting to see how you both recover differently from open surgery and laparoscopic
though they were a week apart. My mother had pancreatic surgery on Friday. She’s not having any pain yet. It seems like they could prevent that, at least when you first wake up. How soon before you could eat Michelle? It’s great that you could both choose such experienced hospitals. I’m sure I won’t have that kind of a choice with my insurance, since they won’t even send me to UCI which is so close, but how did you find out about John Hopkins Michelle? I’m trying to find out what I can about UCLA and USC. I received a referral for an endoscopy at UCLA, again, and an endocrinologist at USC as a second opinion. But I’ve been to both, and I still have this condition 13 years later! Sorry, I think I’m a litttle tired.

Just to let you guys know, I have an old scar from kidney surgery, and I forget it’s there. Same color as my skin now.
Be sure and use that cream for scars.

Angie, are you still having stomache pains after 4 weeks? Bummer. You have a great attitude though.

You are all tough women!
pEGGY
Lauren

Saturday, 24th March 2007 at 9:17 am

Hello all, My name is Lauren and I am so thankful to have found you’re comments. I have been searching the web constantly for info but unless you’re a ferret, input from others is limited. I’m 34 and I’ve been diagnosed w/ insulinoma recently strictly based on 5 hour fast, blood sugar, cpeptide and insulin levels. I had an MRI but they saw nothing, however only an analyist looked at it. Two doctors here in New Olreans have told me I have insulinoma. When I wake up in the morning my levels are around 45. They don’t get above the low 60’s all day unless I eat something really sugary. My average levels all day are between 45-65. When I was in high school I did a glucose tolerance test and it went down to 36. Thats the lowest I’ve ever been. Has anybody else who has actually found an insulinoma had levels this range or were they much lower? My local endo doc has sent my files to MD Anderson in Houston and also the Mayo clinic in Minnesota as they are supposed to be the experts. It is refreshing to hear that some of you did not not have anything show up in preliminary scans. I am absolutley terrified of having surgery with no outcome. I have 2 small kids at home. I have ALL of your same symptoms for about the past 15 years. It has gotten worse in the last few months which is why I decided to actually pursue the cause. Now I am kicking myself for not having done this sooner. My family has suffered as a result of my being constantly “out of it”.
Thanks for reading this whoever does and I won’t be so long winded in the future. Lauren
Peggy

Sunday, 25th March 2007 at 3:18 am

Hi Lauren,

I’m glad you found us! I know how it is to feel as if I had been going through this for the last 15 years alone, before I found this sight. It took me a long time to discover I had low blood sugar, and I think because of some brain damage that had occured as a result, I became severely depressed. Thankfully, that passed eventually and my mind learned to adapt. Maybe THIS is the right time for us to find our answers. As hard as it has been living with this condition, I have to believe that “having done this sooner”, may not have been in our best interest. They have come a long way in the past 15 years, with the amount of information availabe and with medical procedures. It hurts to know how my having this disease has hurt my family, especially my girls, but I pray that it has also made them stronger, and more compassionate people.

I can relate to how you feel about having surgery if they cannot locate a tumor. If I was sure they knew they could find it, I would’ve been there years ago, but I wouldn’t go for an exploratory surgery without a doctor who has had a lot of successful experience with this. The good news is, my mothers doctor said that if they locate a tumor, they can tag or tatoo it so they will be able to find it when they go in. And don’t forget now there is a chance that someone can do it laparoscopically.

I haven’t spoken to my mothers surgeon much, since he is not my doctor, but he told me he wasn’t convinced I had an insulinoma based on the ranges of my sugars. I had told him that my averages were from 40 to 60. He said some women just have lower sugars… This has raised a lot of questions for me. You don’t have to answer of course, but if anyone cares to, I would really appreciate the input.

I usually only test my sugar before I drive and when I feel low(which is all the time). Today I tested all day long and found that I went from 83 to 39 whithin one half hour, and 101 to 41 within 40 min. I ate carbs the first time, and protien and carbs the second time. Does this sound unusual to anyone who has had insulinoma?

Was anyone lower as a result of monthly cycles?

Has everbody gained a lot of weight from this condition?

Lauren, Did they tell you what your insulin/C-peptide levels were compared to your glucose? Were your symptoms worse when they first started?
Just so you know,I definitely have had some months that are worse than others.

Sometimes I feel like I’ve written too much(like now), but please don’t feel that way. Comments don’t come that often and I’m sure anyone who is interested will be happy to read them.
I’m sure Mayo can find some answers for you, and you will enjoy many healthy years with your family. I will be anxious to here your results.
Peggy
Michelle

Sunday, 25th March 2007 at 6:01 pm

Peggy and Lauren,

My sugars were consistently low, especially when I had an ‘episode’ which is what I called my hypogylcemic attacks. On an average day they were in the 50’s or 60’s and in the 30’s when I had symptoms. When you do the 72 hour fast, the cpeptide and insulin levels will determine if you hav insulimoa as it is diagnosed biochemically first.

Best of luck.

Michelle
Lauren

Sunday, 25th March 2007 at 6:42 pm

Thanks for the reply Peggy, my condition has always been worse that time of the month and if ever I had a really bad episode it was during that time. I have also been steadily gaining wait the last couple of months as my condition have worsened. I would absolutley refuse ANY doctor that told me that women’s blood sugars were just low. There’s definitely something wrong with me and I have had all my hormones tested and they’re telling me they’ve ruled out everything else but insulinoma. My blood work results were, I had blood drawn, drank glucose, dropped to 46 in 2 hrs and they drew again:
1st test early morning: glucose 53 mg/L, proinsulin 62.1H pmol/L, c-peptide 1.8 ng/mL, insulin 8 uIU/ml

2nd test: proinsulin 20 H, glucose 46

I’d love somebody to tell me what these numbers mean. My doctor told me that my insulin levels were high not for a normal person, based on what my blood sugar levels were.

How do anybody else’s compare?
Lauren

Monday, 26th March 2007 at 8:38 am

I also wanted to pose this question to anyone. For the 72 hour test I was told I would report to the hospital in the morning, don’t eat breakfast, they would draw my blood and then monitor me until it hit 50 and then then they would draw it again and I would be released. Well what if your blood sugar is already about 45 when you wake up. Seems silly to check into the hospital just to have blood drawn and just to be released. My doctor said I didn’t need to do the 72 hour fast because he had proof from my insulin and peptide level from the five hour test that I probably had insulinoma. Is this enough or is there something else they test for in the 72 hour test that predicts insulinoma? He is now referring me to the Mayo in Minnesotas(i live in New Orleans)
Brendan

Monday, 26th March 2007 at 9:36 am

Lauren,

My 72-hour test was slightly different: they told me to eat a large breakfast beforehand to ensure that my glucose was at a peak. It only took 3 hours to get down to 32, at which point they did another series of blood draws. They allot 72 hours because they want to also verify that you’re not injecting yourself with insulin to artificially drop your blood sugar. Apparently they also check to ensure that your insulin isn’t from animals (which artificial insulin for diabetics often is, apparently). For someone with your symptoms, it won’t last anywhere near that long.

They did other things during that visit, though. They were so concerned about the rate at which my blood sugar dropped that they also took the opportunity to put in a PICC line during that stay (as well as put me through CT and MRI scans). The PICC line was a pain, but made it much easier to manage my glucose levels. Basically, you end up with a catheter in your arm with a port that’s connected to a pump that you wear in a pack around your waist. I was shipped 1 liter bags of a glucose solution every three days, which I had to clear out most of the food in my refrigerator to house. I was getting 1 liter of the solution pushed into my veins every 8 hours, which kept my blood sugar above 65. Prior to that, I was forced to constantly carry around food (and my blood test kit) to make sure I could keep it up.

The Mayo’s supposed to be one of the top places for endocrine tumors; I considered it, but it was more important to me to be near my wife and home, and I was lucky enough to find a doctor locally who’d done them before (and, of course, also was a specialist in laparoscopy).
Lauren

Monday, 26th March 2007 at 9:59 am

Thanks Brendan, I don’t think my case is nearly as bad as yours. I’d guestimate that 3 hours after eating a large breakfast I’d be 45-55 range. Believe me I don’t like the thought of going to Mayo, the flights from New Orleans are outrageous, my husband just started a new job and I’ve got two small kids so I’ll probably be on my own but being that they haven’t located it yet here I want to go the best.
Angie

Tuesday, 27th March 2007 at 2:42 am

Lauren

When I went in for my 72 hour fast I went in the night before and ate a meal at 5pm and started fasting at 6pm. This was because they did not want be going hypo on the way in, this could be especially worrying for you if you have to report to the hospital in the morning without eating breakfast.

You said they would monitor you until you reach 50? That would be ‘3′ here as we use a different scale. Ive been trying to work out all the levels everyone quotes. (0.6 mmol/L = 10 mg/dL - ie 1.8 mmol/L = 30 mg/dL) Are you impressed!!!!!

My endocrinology tests came back as 2.5 which roughly 40. Anything lower than 50 is considered unusual and below 30 is serious. In the Uk if you go below 1 you are probably in a coma! which would be less than 20.

When I had my 72 hr test they stopped it at 1.6 which would be 26 ish but I went in at 36 which was low anyway. (These figures are approximate!) 50 seems to be quite high especially when you are around 45! Its good tho you wont have to do the 72 hr test. I ended up dreaming about biscuits after 24 hrs it was really odd as I kept having to remember I couldnt have anything! Lucky the NHS food isnt that good as I actually didnt feel I was missing out!!

Everyone!

Ive just been for my follow up appointment. Everything looks good! I feel good as far as my sugar levels go! Still have pain here and there and sleeping is slowly improving.

However my surgeon informed me they removed my Gall bladder - good to know now!! I might have missed it! He said he removed it as it ‘was in the way’!!! Good job nothing else got in his way!!!

the insulinoma was just an ‘insulinoma’ nothing worse! and my gall bladder was slightly inflamed - well so would you be if youd been removed!

I may have to go back for another 72 hour fast to check everything is ok - this is a bit dodgy as Ill have to do the whole 72 hrs this time. I only did 30 before they stopped it and that was ok but 72 AAAHHHH!

They may also monitor things for a few years to make sure it doesnt return!

There are a lot of comments on here about weight gain and this is my pet gripe! No doctors here would attribute weight gain to the insulinoma and put it down to overeating because of being hungry due to low sugars. I really disagree here and as I monitored what I ate over the years and was trying to lose weight this really frustrates me.

I didnt put on a huge amount but my weight increased gradually 14 pounds over two years. this wasnt much in all but when you are continually battling to lose, that its a lot! Ive recently been reading the ‘Greek doctors Diet book” which talks a lot about insulin and diabetes and he basically says too much insulin puts on weight. At the end of the day an insulinoma screws up your metabolism!

There is very little info on this anywhere. The surgeon who performed my endoscopy asked me about my weight and seemed very interested but it took me so long to come round afterwards he had gone!!

Im hoping it will all fall off now and Ill be thinner than ever - ha ha Ill let you know.
Seriously I am hoping my metabolism will get back to a more normal balance and Ill at least be able to control things a little better!

Sorry this is very long this morning! Im still indignant over the loss of my gall bladder!!! Ha!

Myrah - where are you?
Susie, Amanda and Michelle - Hope you are still recovering well!

Best wishes all!
Angie
Lauren

Tuesday, 27th March 2007 at 4:44 pm

Has anyone here used diazoxide/proglcem? I started on it yesterday. My dosage is supposed to be 100 mg 3x a day. I’m a spaz and I accidentally doubled my 1st dose. Let me tell you 2 hours later my bs level was 90!!! I wanted to cry I was so happy I felt so good!! This morning I realized what I had done and I took the regular doses. I haven’t noticed a change at all my sugar has been in the 50’s all day. I’m wondering if it takes a while to get in my system or should I be upping my dose? What dosage is anybody else taking?
Peggy

Tuesday, 27th March 2007 at 8:35 pm

Angie,
I’m glad you’re feeling better! I guess I’m not the only one who’s up in the middle of the night sending these. Is that because you still can’t sleep comfortably? I was wondering, is the time recorded on here our time? Did you actually send it at 2:42 a.m? Just curious.

I have always heard that insulin makes you put on weight! I’ve have been real careful about what I eat, but the amount of quick sugars I’ve been consuming over the years has definitely added up. I’m most looking forward to going back to eating lots of vegetables or just a salad for dinner. Although, now I’m so use to thinking FOOD all the time, it may not be as much fun as I thought. Well that 72 hour fast will should start you out on the right track!

Condolances on the loss of your gall bladder!

Michelle, it’s been what,3 weeks? Has your pain gotten a
lot better? Your sugars sounded just like mine, but did they ever get very high?

Angie, did yours? Or did any of you ever have to have glucose shot into your veins in order to wake you up?
Since they can’t find a tumor so far, I’m just curious if I’m any different then all of you.

Lauren, I think you’re taking the highest dosage of Progycem. I’ve taken it for years. It never really raised my sugars, but I went for a couple years without having any trips to the E.R. It doesn’t work that well any more. Do you still have to have the 72 hr test since you’ve already been diagnosed? Maybe Mayo will require it?
I have had it done twice, and I was told not to eat that morning, but since I know myself better than they, I always do anyway. It doesn’t take long for me to drop.
I can’t remember what my levels were, but they did say that the insulin was high compared to the low sugar.
The part that worries me is, the first time it was done..13 years ago, he said although it was high, they expected it to be even higher. The other thing is this new doctor saying that there is some women who have lower sugars without an insulinoma. He didn’t give any other explaination.

I sure wish Jon would comment. (hint hint)

Susie, Amanda, where are you???
Lauren

Tuesday, 27th March 2007 at 8:45 pm

Angie, did you lose any weight with the surgery? were you on an IV? I’ve been reading the insulinoma board on the yahoo boards as well(there’s much more feedback Here) and a couple people there said they lost about 20 lbs just with the surgery!
Susie

Tuesday, 27th March 2007 at 10:29 pm

I had my surgery on Feb 2 and I lost 22 lbs. My surgeon wouldn’t let me eat for 10 days, he wanted to give my pancreas a rest since he had to remove part of it. Then I had terrible drainage problems when I got home, they started me on the statin injections which really helped. My drainage is now 99% dried up. I still don’t sleep well since I have to sleep on my back and my abdomen hurts alot. I wear a adjustable type corset that helps with the pain. I wore it the whole time when I was in the hospital, i only wear it at home when my incision starts to bother me.
I was never on that diaoxide. Because none of my doctors thought I had a insulinoma. I was told I had reactive Hypoglycemia.
This has been the longest recovery of my life, I had 2 C-sections and a hysterectomy and those were a piece of cake compared to this surgery. All I can say is I don’t have to worry about those horrible blood sugar problems anymore.
My surgeon says it’s a horrbile disease and the insulinoma definitely puts the weight on. He kept on telling me that. My surgeon is one of the best in the country on pancreatic surgery, he’s been Chief of Surgery and written many manuals on pancreatic surgeries. People from all over the world fly in to see this guy, he’s so good.
When I had to do those 72 hour fasts, I would eat dinner and then start my fast after dinner, the doctors wanted my blood sugar to drop under 40 and be symptomatic, showing signs of hypoglycemia. I got down to 35. I would get so anxious, which is another sypmptom of a insulinoma.
Hope this helps.
Good luck!
susie
Angie

Wednesday, 28th March 2007 at 2:11 am

Peggy

Hi its 09.00 as i write this and yesterday it was about the same so I must be 8 hours or so in front. Its getting bad I have to check in here morning and night now to see whats going on!!

My sugar levels never went very high but I really only tested in the mornings as that was when I had most lows - around 10.30 am or so. there was never any reason but I was always lower at weekends! I never had black outs but I think thats because my body just coped with being so low for so many years. It was just something that I was used to without knowing anything was wrong. When they first diagnosed this I really didnt take it seriously and wondered why everyone was running around in a flap!

Lauren

I was on diazoxide for 10 months or so. It took a while to get my dosage right. I had odema in my legs so had to take diuretics, which in turn caused itching and dry skin. I still had hypos but not as many but my sugars didnt really go very much higher either.

I lost 7lbs or so over the two weeks I was in hospital for my op - My appetite wasnt good after the operation but I was encouraged to eat after 2-3 days - I hoped to lose more but after a while i was eating semi normally - although my stomach was a little delicate for a while.

Got to go - Ill be back later !!
Peggy

Wednesday, 28th March 2007 at 8:54 am

Lauren,
How do I find the Yahoo boards??
Peggy
Lauren

Wednesday, 28th March 2007 at 9:08 am

Angie, do you remember your exact dosage when you finally got it right?

To find the yahoo boards, go to Yahoo’s website and go to groups and do a search for insulinoma, there are also 2 hypo boards. You will have to register. A while ago there was input from a few people who had the surgery but lately its just been me and another chick going back and forth on that board. Like I said there’s much more input here.

Susie- who exactly is your surgeon, where is he and is he hard to get? I have MD Anderson and the Mayo in Rochester reviewing my case right now.
Aileen

Wednesday, 28th March 2007 at 9:28 am

Hi…it has been very encouraging to read the messages here. I am a 35 year-old female who has recently been diagnosed with insulinoma. It has taken approximately two years for me to be diagnosed (it was finally established in February of this year). Originally, my episodes were infrequent, brief bouts of momentary confusion and blurred vision, the first one occurring at the end of 2004. I didn’t have another one until the fall of 2005. Given the irregularity of the episodes, I assumed it was stress (I am a graduate student) and never gave it another thought. In December of 2005, I traveled with my husband to Europe and had a series of sleeping episodes (periods of deep sleep lasting 12-15 hours from which my husband was unable to rouse me) that we later thought was related to jet lag. However, when we returned to the U.S., I experienced a couple more of these episodes without any apparent provocation. My GP had my glucose tested at this point, and it came up at 61, which is a little low, but apparently not low enough to cause any alarm. When I traveled to South America for the summer (where I conduct my field work), I started having frequent episodes of “zoned-out” behavior, in which I couldn’t follow conversations, didn’t make much sense myself, and had trouble with physical facility, such as walking and vision. On occasion, this problem seemed to be relieved by food, but I never quite made the connection. I also started having pronounced “seizures” at night. When I returned to the U.S., I started seeing a neurologist, and consequently had a MRI of my head and an EEG done, both of which turned up normal. At this point, my neurologist had no idea what was going on and my husband and I were left very confused, feeling as if we were losing our minds.

Also playing into this whole story is that right around the time these episodes started occurring, we were trying to get pregnant…I was diagnosed with having a uterine fibroid (which was surgically removed) and thought that would be the end of it. However, I started having more frequent anovulatory cycles, and my reproductive endocrinologist, thinking I had polycystic ovarian syndrome, prescribed Metformin. Once I started taking this medication, my nocturnal seizure episodes increased in frequency (I have read that this is a common reaction to Metformin for those with insulinoma). Given the links between insulin and PCOS, I started going back to the idea that my problem was hypoglycemia, and did an overnight fasting test with my GP and came back at 35! I then started seeing an adult endocrinologist, and after a clinical fasting test, she was able to confirm insulinoma. I just got my ctscan done this week (I was overseas again for about a month, thus a delay) and a type 1 insulinoma tumor is clearly visible at the head of the pancreas. I have been referred to a surgeon (fortunately, I am at a university that has a research hospital), so I am still waiting on that.

I know some earlier messages on this site referred to the need to do open surgery when the tumor is located in this part of the pancreas, and I just wondered if anybody else had information and words of wisdom in this matter. The thought of surgery is very, very scary, but it is non-negotiable; the insulinoma has completely changed our lives (me not being able to drive or exercise, weight gain, having to get up in the middle of the night, putting my dissertation on hold, dependency on my husband’s care). Also, it is possible that the PCOS and insulinoma are connected, so it is potentially contributing to the infertility. In addition to the surgery question, I am curious if you all know of others who have had both PCOS and insulinoma.

So glad to find you all!
Susie

Wednesday, 28th March 2007 at 10:21 am

My surgeon is Dr. A.R. Moosa at UCSD Thornton Hospital in La Jolla, CA.
Angie

Wednesday, 28th March 2007 at 10:40 am

Lauren

Ive just written a long reply and I crashed so here I am again…

I ended up taking 2 x 50mg of Diazoxide morning and night. I tried taking lower doses but they werent sufficient. However because of taking 200mg per day I suffered from odema in my legs and ankles so had to take a diuretic. Which in turn made me horribly itchy and had dry skin patches.

I often had ‘lows’ and the odd hypo but in the short term it was better than nothing. Because of the effects my doctors suggested it was not going to be suitable to depend on the drug which made me consider surgery more seriously - diazoxide can stop working after a while.

I did experience increased hair growth, which was fine on my head as my hair had got thinner but wasnt too happy with hairy toes!!! This also could have been were my body was functioning better so my hair and nails improved.

All in all I sound so attractive!!! - Ive shaved my toes and it hasnt grown back!
Good luck

Angie
Lauren

Wednesday, 28th March 2007 at 10:44 am

Damn! I was hoping your surgeon was closer, I’m in New Orleans.
Welcome Aileen! Did you go to someone specific to insulinoma treatment that found it or did your regular endo find it? Is a CT scan just a Cat scan or is it that spiral one I keep hearing about?
Aileen

Wednesday, 28th March 2007 at 12:10 pm

Lauren,

Thanks…my endo diagnosed it. Since she is associated with the university’s research hospital, she has had a few of these cases referred to her. I didn’t ask, so it is possible that my ctscan was just the regular computed tomography, but isn’t the spiral ctscan supposed to generate more images? Mine resulted in 200.
Lauren

Wednesday, 28th March 2007 at 2:10 pm

I really don’t know much about that but 200 images does seem like a lot, my endo is referring me elsewhere after glucose testing and one MRI which showed nothing. The hard part for me right now is the waiting for a specialist to take my case.
Homa

Wednesday, 28th March 2007 at 5:32 pm

Hi Aileen
I also have PCOS and insulinoma. I was diagnosed with PCOS about four years a go, At that time I was not diagnosed with insulinoma, but I know now that I had it. I have been having low blood sugar episodes for the last five years. They were finally able to diagnose it two years a go. I do wonder if the PCOS and insulinoma are related, since insulinoma is so rare. If you find out any infomation on it please let me know.
You are very lucky that they were able to locate the tomer. I did the CT and MRI and some other tests but they were not able to find it. So last September I had an exploratory surgery for eight hours, and they were not able to find it. I am not giving up and going to another hospital and I am sure they will find it.

Hi Angie
I am so glad to hear that you are doing better. Sorry to hear about your loss of gall bladder, it least they didn’t have to remove a part of the pancreace. That is something I am worreid about. Hope the rest of your recovery goes well. It has been six month since my surgery. I still have bouts of pain here and there, but it has eased up and it is not as intense, and I feel the improvement. I just hate going through all that for nothing. Oh well, hopefully next time is the charm. Just wanted to let you know, the recovery may take a while. I wish someone had told me that when I had my surgery. It sure would have helped.

Peggy
I also have more symptoms during that time of the month. I would say most of my episodes have happened at that time. I do not know what is the correlation there. I did gain good bit of weight in the last five years. I have gone from being 100 pounds, (yes 100, I was a skiny little thing) to 140 in three years. I needed the weight gain, and now I am just about average. But the weight gain came all of the sudden. about the time I started having episodes. I used to try so hard to gain “one pound” and I could not, and in matter of month, as soon as I was diagnosed with hypo, I started to gain a pound or so a month. My weight has been pretty stable for the last year. I am not your typical person with insulinoma. i do not eat much at all, which is not good either. but I still gain the weight. I have decided to avoid the scale completely, since it won’t do me no good to get on it. It will just frustrate me.

Laureen
I am also planning on going to Mayo soon. I was supposed to go last month but somethng came up and I was not able to go. I know what you mean about it being far. i can not imagine going somewhere that far for surgery. I have done a lot of research, and I can not remember the numbers, but they have an impressive number of cases of insulinoma that they have treated. something like over two hundered something in the last twenty years or so. That is a lot, when you consider the low rate of people who are diagnosed with it. I will keep you posed and let you know how it is up there if I go and you let me know how it goes if you go there before me. I did want to let you know that they would probably do the 72 hour fasting test at Mayo again. I have been diagnosed and had tests and surgery and all kinds of stuff done to me, but at Mayo just like any other hospital, they do not accept anyone else’s tests and have to do their own. It is hard to start all over again, but I am willing to do it and be free of insulinoma. It will be my third time going for a 72 hour fasting, maybe third time is the charm, ha

Best of luck to everyone
Homa
Lauren

Thursday, 29th March 2007 at 8:17 am

Thanks Homa, I am waiting on a Dr. Service at Mayo to review my files and admit me. Its already been a week. Did you have another doctor refer you there or are you just making an appointment and going? Do you know what docotr you are going to see? I’m hoping I will only have to make 2 trips, one for testing and one for surgery.
Aileen

Thursday, 29th March 2007 at 9:11 am

Lauren,

Yeah, 200 is a lot, but I remember the technician telling me that. Apparently, the spiral ct scan produces something like 30 image slices per second, so perhaps this is indeed the system that was used on me.

Good luck with finding a specialist!

Homa,

Thanks for the response…from what I can tell, there are apparently quite a few cases of patients who have both PCOS and insulinoma, but not many of these have been documented in the medical literature. This could be related to the fact that the median age at time of the diagnosis is rather high (in other words, when most women are menopausal). At least, that is what I gathered from the articles I have read. Two citations that might be of interest to you are: Stanciu, I.N. et al. 2003. Insulinoma presenting with hyperandrogenism: A case report and lit. review. Journal of Internal Medicine 253: 484-489 AND Murray, R.D. et al. 2000. Clinical presentation of PCOS following the development of an insulinoma. Human Reproduction 15:86-88. If you or your doctors cannot get these, I can send them to you. In both cases presented, the symptoms of PCOS disappeared after surgery. Interesting, at the very least, but it seems to be a subject of scientific debate.

I wish you the best of luck in your search…don’t give up hope! Please keep us all updated on your progress.
Homa

Thursday, 29th March 2007 at 9:26 am

Hi Lauren
I think I am going to the same doctor. I can not remember, I have to chekc it again. My doctor at duke hospital is referring me Mayo. I will let you know when I find out.
I am also hoping to only go for two trips. I am planning on going for three to four days the frist time so that they can get all the tests done. Because it is not like we can just run over there for another test anytime they want us to go.
That would be neat if we have the same doctor. When are you planing on going there? They were supposed to call us in February to schedule an appointment but instead, they send me a letter informing me of my appointment that was already made. Of course we could not go at that time. I guess big places like Mayo are so busy that they just make the appointment for you and you better make it there, or otherwise you got to wait for a while. I understand they are busy, but hard to drop everything and go when they want you to go.
I am not sure when I am going to go there. April is a really bad time for me. I am exteramly busy with work. so I will have to see.
Keep me posted
good luck
Homa
Lauren

Thursday, 29th March 2007 at 10:25 am

I am not sure when I am going. They are suposedly reviewing my case first I am just waiting to hear from them. I could basically schedule to go for testing at anytime, granted I have about 2 weeks notice to book decent priced airfare. The surgery will be a different story. Its hard to imaging recovering from a major surgery so far from home. I’m in New Orleans where are you? I want to get this over with! I would ideally like to have the surgery in the summer when my kids are not in school.
Peggy

Thursday, 29th March 2007 at 6:50 pm

Lauren, Homa,
I wish I could join you two at Mayo! We could have a party :) It looks like we’re the only ones so far that haven’t had insulinoma confirmed.
Lauren, couldn’t a doctor in your area perform the endoscopy, or at least a CT? They may have to do them over again at Mayo regardless, but it seems if they could find the tumor first you would be more of a priority on their list. You’ve lived with this a long time, I know how anxious you are to have it resolved.
Homa, thanks for the info. You really don’t eat that much? I wonder how it compares? Have you had the calcium infusion test yet? I’m going to ask for that. If I ever feel confident enough to make a decision on who is qualified enough to treat me. I haven’t had good luck with that so far.

Aileen,
Welcome to this unusual club. Insulinoma has affected our lives in a way that is impossible to explain to anyone else. You’ve done a pretty good job of it though. The way I get around driving is to monitor my sugar every time I get in the car, take short trips only and always have glucose handy. I do pretty well recognizing my symptoms now. After living with insulinoma for 15 years, it is hard to imagine how different my life would’ve been without the dependency. I’m a different person mentally than I use to be. But, you learn to make the best of it.
Since you seem so capable, do you mind if I ask for advice on how you would go about researching how much experience
a doctor from a particular hospital(UCLA or USC)has?
If I hadn’t already been through it I wouldn’t be so hesitant.
Hopefully your surgeon will have good news on the type of surgery that is neccessary and your life won’t have to be put on hold much longer.
Peggy
Lauren

Friday, 30th March 2007 at 9:02 am

Thanks Peggy, I have thought of that, if I don’t hear something soon I may try that route. Homa, how long did it take Mayo to make an appointment for you after you gave them the referral or contacted them? Is a CT scan a CAT scan or something special?
Aileen

Friday, 30th March 2007 at 9:26 am

Peggy,

Thanks for your words of encouragement…since you have been living with insulinoma for so long, I was wondering if you have had your blood tests at least confirm the high insulin/low glucose levels? If so, have you simply identified symptoms of insulinoma that far back? I am pretty sure I have only been experiencing these symptoms for the last two years, but when I hear of others who have had it for much longer, it makes me wonder.

I have heard that diabetics often check glucose levels before driving, so I haven’t attempted that yet. I really miss being able to drive! It is a little bit intimidating, though, since I am not always able to sense the hypoglycemic episodes coming on.

Concerning the doctors, I just happened to luck out with an endo who has had experience with insulinoma…it was a complete fluke. However, I just found out who was going to be handling my surgery, so I have been looking up his information on the web (my endo has assured me, though, that he has performed this type of surgery often). I am also going to a university hospital, and many of our doctors here have CVs available from the hospital website, so this might be an option for you. The CVs would at least indicate the physician’s areas of interest and educational background. Also, the state of Florida provides a website through the Dept. of Health where a physician’s qualifications can be confirmed (practitioner profiling). This might be an option for you in your state…I hope this is of some help!

Good luck with your progress!!
Homa

Friday, 30th March 2007 at 9:34 am

Hi Laren
It did not take them that long to schedule an appointment. I would say only a couple of weeks. They will mail you a big package that you have to fill out, so that they can get some background information on you. They want to know everything. the only thing they did not ask was who who was my first grade teacher. lol.
I believe CT is a CAT scan. I had it done three times before but they were not able to find the tumor. I guess mine is just too small.
Hopefully we both will be able to go to Mayo soon
good luck

Hi Peggy
My case of insulinoma is confirmed. The 72 hour fasting which only lasted nine hours for me showed that indeed I have insulinoma. They just have not been ablt to find the tumor yet. I am one of the very few people who has had unsuccessful exploratroy surgery. I did a lot of research on it. and the rate of finding the tumor through intraoperative surgery is very very high, I guess it just was not in my case. The only test i have not done is the calcium infusion test. I am sure they will do that at Mayo. you do want to go somewhere with experience in doing that test. I do not know how I manage to keep my blood sugar up with as little as i eat. The only time I eat really well is before bed. which brings me to a question I like to ask everyone. Do any of you snack before bed? Since most of my episodes happen first thing in the morning, I have to eat something before bed. On weekends when I get to sleep more at nights, I have to set the alarm to get up in the middle of the night and snack on something. That is the worste feeling in the world to have to get up in the middle of the night to eat, but I guess it could be worse. I usually eat a bowl of oatmeal and a little bit of peanutbutter or a peice of cheese before bed. If anyone snacks before bed, what do you usually eat?
Best of luck to everyone
Homa.
Aileen

Friday, 30th March 2007 at 9:47 am

Homa,

I have been eating a snack before bed only for the last couple of months…this was done on the advice of my endo, since I am prone to nocturnal hypoglycemic seizures. Since I have started doing this, I still go pretty low, but not so low that I have seizure-type episodes. I usually eat a granola bar or cheese and cracker…if I run super low when I check my glucose in the middle of the night, I will drink OJ to get the sugar up quickly, followed by something that will burn for longer (wholegrain carbies, usually). I agree that this is a huge pain, but I think it is responsible for the disappearance of my seizures.
Lauren

Friday, 30th March 2007 at 10:02 am

Homa,
You have been through my worst fear right now! Surgery to no avail, I can’t imagine. That really has me worried! I’m glad it is uncommon. As far as eating I normally try to eat something with a lot of fiber in it. Fiber stabilizes the blood suga from all the research that I’ve done and I believe it to be true. I will eat a piece of double-fiber bread w/ peanut butter usually and I started popping 2 fiber pills before bed as extra precaution.
Peggy

Saturday, 31st March 2007 at 12:14 am

Hey everyone,
Funny you should all mention eating through the night. My husband use to wake me in the middle of the night, but hasn’t for a long time. I guess it’s time to start again since he couldn’t wake me this morning and had to call the paramedics. You know what I hate the most about that? Besides waking up to seven strange men standing in your bedroom staring at you, they always shoot you with so much glucose. My bs was at two hundred and twenty something! And I do great at 60! I guess their not allowed to give you any less. At least I’m back in the land of the living. I also hate what that does to my daughter. I guess this means it’s time to make a decision, even if it isn’t the best doctor. I spent all day with my mom who is still in the hospital after pancreatic surgery. Watching what she’s going through is what’s made it hard to jump on the wagon.
I have lots of questions for you all, but they’ll have to wait until morning - I’m going to go eat a snack.
Thanks for being there
Jon Mikel Iñarritu

Saturday, 31st March 2007 at 1:38 am

WOW, I can’t stop reading your nice and open-hearted comments. If there are four cases per million per year, what percentage of the world-wide insulinoma sufferers population have read this little article and HOW percentage of you have written your kind comments, questions, answers and anecdotes?

This is amazing. Thank you for maintaining this site online.

I’m wondering if we can join all the medical data (lab work, CTs, etc) and make it public to the world.

Best wishes for all of you,

Jon M. Iñarritu-Castro, M.D.
Angie

Saturday, 31st March 2007 at 3:23 am

Jon

With so little information on the net for Insulinoma it has been such a comfort to read and be in contact with so many people going through the same things.

Because of this site I was able to get in contact and meet Helen. She had been through everything last year and was such a comfort to me when I only knew the information my doctors were able to give me.

Considering the number of people who have contributed since the beginning its seems there has only been two of us from the UK and in the same area. It was such a coincidence that we had the same doctors and surgeons.

Talking with people in the US in the same situations, having the same symptoms and trying to cope with it all has been just as valuable.

I am sure everyone will agree this site has been invaluable to all of us and will continue to be. Perhaps it may give a wider view for doctors studying this particular area as I am sure first hand information and experiences count for so much.

Thank you again for creating this ‘comfort zone’ !!!

Regards
Angie

PS I have started swimming again, even after only 3 days it is really helping the muscles in my abdomen recover.
ST

Saturday, 31st March 2007 at 6:42 am

I stumbled upon this site during my search on Insulinoma. My wife had insulinoma and the surgery has been completed.

She had the classic symptoms of insulinoma (confusion, loss of orientation, blurring of vision, stupor, memory lapses), always in the morning which will subside after eating something. While we were in the US, these symptoms persisted for 2 years and no doctor (multiple opinions) were able to diagnose. Given that we had 2 kids and being from India, we returned to India. Our family and friends circle in India included some eminent doctors/surgeons which made us do so. She never had seizures in the 2 years in US but had a couple after our return to India. She was diagnosed with insulinoma after the fasting hypoglycemia test and with CT and endoscopic ultrasound, the lesion was reasonably located.

Now that the first nightmare ended (undiagnosed illness), the next one started. Unfortunately her lesion was vascular and adherent to the pancreatic duct and was on the body of the pancreas. One option was distal pancreatectomy wherein she loses 50-60% of the pancreas which would greatly increase her chances of becoming diabetic. Other option was to save the organ and enucleate but her duct will get damaged. The surgeons advised the second as she is 30 yrs old.

The surgeons tried laparascopic (which they felt was not possible for success) and ended up doing the open surgery. As thought, during removal of the lesion, a hole formed in the pancreatic duct. After that the treatment was very cautious with TPN nutrition, various antibiotics and pigtail drains. Regardless of the cautious care, she developed acute pancreatitis and developed infection after about 2-3 weeks. As per the doctors, where the hole is in the duct, necrosis developed and it is not healing. Stent (ERCP) was tried and it came through the hole/cavity instead of bridging across the duct. Her drain is now about 20cc/day and dwindling. The time she has been hospitalized so far is 8-9 weeks (hospitalized last week of Jan 07).

Her options now - (a) Stricture in duct and atrophy (no surgery needed). (b) Stricture in duct and surgery called jejunostomy (intestine to duct link). (c) distal pancreatectomy.

Stent (ERCP) can be retried but the surgeons are worried that it may lead to infection and chances of success is also considered very low.

As she is healing well now, (a) or (b) looks promising. Still looks like another 3-4 weeks of stay resulting a total of 3 months stay. Hoping and praying she will get better soon.

I know the above might create a bit of uneasiness for a few but still better to get the surgery done and get through the insulinoma effects. BTW, my wife’s sugar levels are normal now.
Susie

Saturday, 31st March 2007 at 2:18 pm

Peggy,
What was you blood sugar levels when you wouldn’t wake up the other morning. I can’t believe they didn’t take you to the hospital.
You need to get a endoscope to see if they can locate the insulinoma. Life will be so much different for you once you get it taken out.
Where do you live?
Peggy

Saturday, 31st March 2007 at 9:32 pm

Susie,
They said my blood sugar was at 26 when the EMT’s tested me. I’m sure it’s been lower, because this time I came to rather quickly. Other times this has happened, once I was awake, I couldn’t answer any of the questions they ask you about your life or the world in general for quite some time.
That is a horrible feeling. The reason I didn’t let them take me to the hospital, besides how much the ambulance costs, is that this has happened quite a few times. I woke up in the hospital twice, and they just shoot me full of glucose and then send me home with a large emergency room bill. I did have an endoscopy last year, and they didn’t see anything. I am going to have another one soon. I just hate to have it performed by the same doctors that couldn’t find it the first time. I don’t think I have much choice with my insurance. Did you say that you lost 22 lbs. after surgery? That’s why they didn’t want to do exploratory surgery back then, I weighed only 105… I’m just going to have to go for it now. It’s all worth it though, right??
I live in Orange County.

Aileen,

I have had two 72 hr fasts and my insulin was higher compared to my glucose level both times. My first test was done 13 years ago and yes, I have been having symptoms for that long. Has anyone else here had symptoms for longer than a couple years besides Lauren?

I didn’t drive for awhile at first, I know how frustrating that can be. You could always suck on candy for short trips. But if you’re not familiar enough with your symptoms yet, it’s safer not to drive.
Thank you for the info on Dr’s backrounds. I will check with the Dept. of Health. However, the info I would want is their amount of experience specically with insulinomas, not just with pancreatic surgery, and also their success rate.

Lauren,

They have so many tests now to locate insulinomas, I wouldn’t worry about them not being able to find it first before they operate, not at Mayo anyway.
You know, I had the fiber before I went to sleep the night I didn’t wake up.

Questions:
Does anyones sugar get lower when their sick? I ‘ve been real dizzy, so maybe I have an inner ear or a sinus thing.
Have any of you had to be revived with glucose?
Susie

Saturday, 31st March 2007 at 9:55 pm

To Peggy,
Hi Peggy,
Your blood sugar was 26, that is really low. So it sounds like you have had all the tests and nothing comes up. Have you gained weight from all this. I gained over 20lbs in a year, when I was excerising everyday and eating around 1500 calories a day and couldn’t seem to lose weight. My doctor told me it was menopause since I had a hysterectomy when I was 46, I didn’t believe it for a minute, not the way I was excersing and my rear end was getting bigger, I had never had a big rear in my life. That is one of the signs of insulin resistance. I knew something was wrong. My Uncle who is a physician in San Francisco told me a year ago I might have an insulinoma. When I went to my stupid doctors they said I didn’t according to my lab results. Little did they know that you need to do a 72 hour fast to diagnosis this condition.

You don’t live very far from me. I live in San Diego. I had my diagnosis at UCSD down in Hillcrest, my CT and MRI didn’t show anything, not until I had the endoscope did it show up. My insulinoma was very tiny, about the size of your fingernail.
Before I went in to the hospital to have my surgery, my surgeon told me to drink sugary drinks all day to keep my blood sugar up. If your blood sugar drops that low in the middle of the night I would keep Gatorade or grape juice next to your bed. I’m telling you that grape juice I was drinking before my surgery had 42 grams of sugar in it.
The reason I lost so much weight is because I couldn’t eat for 10days after my surgery and I had a huge amount of drainage . But I needed to lose the weight and have 20 more lbs to go.
Good luck with everything.
Aileen

Sunday, 1st April 2007 at 8:49 am

Peggy,

It is just incredible for me to learn how long some have had to deal with this…my endo mentioned that the head of her medical team once had a patient that had been suffering from an insulinoma for 30 years before being correctly diagnosed! Apparently, prior to being diagnosed, his previous doctors decided he had epilepsy (I guess due to the seizures).

Yeah, I think driving is out for now, unfortunately. The state of Florida has a law stating that if one has had a seizure (or anything else that can impair driving), he or she cannot drive for 6 months, and I have to agree that this is probably something I shouldn’t engage in right now.

Concerning the doctor issue, this might be more of a question for Jon to answer, but I think if you ask the surgeon these questions, (s)he is required to give that information. Otherwise, I imagine the referring physician could tell you about the surgeon’s background. Good luck with this!

ST,

Glad to hear from you! It is encouraging (albeit a little scary) to read of others’ surgical experiences. I will know after April 10 what kind of surgery I will be looking at, so I will keep everyone updated. Due to the location of the tumor (at the pancreas head) I have this sneaking feeling that I am also looking at open surgery. Best of luck to your wife and family!
Lauren

Monday, 2nd April 2007 at 9:01 am

Has anyone else had bad experiences with diazoxide(Proglycem)? I started taking it Tues and it did help with my sugar levels I actually got up to 103 which has never happened before. However I started gaining weight and retaining water big time! I started on diuretic which helps but I still feel huge! I think I’m going to get off of it so I don’t have to buy all new clothes!
Helen

Monday, 2nd April 2007 at 11:45 am

Hi Lauren,

I had a bad reaction to diazoxide, I had hives rash from head to toe. I was doing fine on it for the first 2 weeks then I started with very itchy ankles, then by that evening my legs were covered in a rash, by 3am I could not take anymore and got into a cold bath to relieve the itching. I went in to see my consultant who was sure it was the diazoxide, he asked that I stop taking them and wait for the rash to go then start up on diazoxide to ensure it was the tablets causing the rash. Yes it was the tablets, as the itching started up and before I could get a rash I took some antihistamines. But I believe this is a very rare reaction to have.

I have had my operation last April. Thankfully it all went well. Our surgeon here in London (our being Angie & I), tells his patients that he does not know until he has opened you up whether it will be a whipples or an enucleation. So it was very scary to go into theatre not knowing, but having faith & confidence in my surgeon played a big part in going through with the surgery. Also that I am 36 and did not want to live with insulinoma and taking the chance of being told 10 years or so down the line that it needs to come out. He is a perfectionist and will do his utmost best for you; I believe he took about 3 hours to find my tumor, which to me reflects his perfectionism, in total I was in theatre for 8 hours, had to have a scan whilst in there. When I woke up I was comfortable enough besides the tube that goes up your nose into your chest, that had to come out as it was not doing it’s job, I was vomiting therefore it was bypassing the tube. I was in high dependence unit for 2 days and had an epidural for about 4 days, which was great. They put that in before I went to sleep to help with pain afterwards. Then they tried to take me from the epidural straight to morphine tablets which I can say did not work for me. I was in agony for 7 hours, felt worse than giving birth to my son. My whole stomach area was burning, think this was the nerves feeling very raw. Anyway they eventually came and set me up with a patient control system which is Intravenous Morphine where you safely self-administer pre-determined doses of analgesia, until you feel comfortable. Overall that was probably the worst part of the whole experience for me. I was in hospital for 2 weeks with a few minor complications.

I had all the tests between October 05 & May 07:- 72 hours fast and I lasted 36 hours before my sugar level was 1.2 mmol/L (don’t know what that is in mg/dl) but normal readings are between 4 & 6 and border line is 2.6 mmol/L, I had double vision; sweating; disorientated and shaking. They think I had only insulinoma for about 2 years which is when my symptoms started but they were only a bit of spaced out feelings and blotchy vision. I got more symptoms as time went by and also started to happen more frequently. A month before I was diagnosed I had 2 episodes where I collapsed, as I was running around in the park with my son and obviously my sugar levels had dropped very low and in the last episode I did not know what was going on around me. I still did not know at this stage what was wrong with me.

I had 2 MRI scans, ultrasound, CT scan, glucose intolerance test, angiogram. My tumor was only half the size of my thumb nail. So after confirming that I have a reaction to diazoxide, they put me onto injecting myself 3 times a day with octreotide, which would control my hypo episodes but I still had them whilst on this medication, therefore this was another deciding factor to go through with the surgery.

So this is a very difficult journey for anybody to go through and a very lonely with an extremely difficult decision to make. The best advise I can offer to anybody is most importantly your surgeon has to be experienced in this procedure and if you have all the faith & confidence in him/her, preferably a specialist in pancreatic surgery; go with your gut instinct and research.

I am coming upto a year now since my surgery and am doing very well, they are going to see me over the next 5 years (yearly visit) as I was young to have had insulinoma. I agree with Angie get back into your normal routine and if you did some form of exercise get back into obviously very slowly. I have not got back into swimming and feel that if I had done so my muscles would be a lot stronger now, but I am doing some tummy exercises to strengthen my muscles.

Anyway I hope I have been of some help and wish you all the very best.

Take care
Helen
Lauren

Monday, 2nd April 2007 at 1:05 pm

Glad your still with us Peggy, wow! Thats low. I have blacked out before, last Monday was the last time, but I’m never with it enough to think to check my blood sugar and nobody does it for me. I know I’m still “with it” at 45 at least I think I’m still with it my husband thinks differently! This board has been so helpful to read, it helps the time go by as I sit here waiting for a surgeon to get back with for seems like eternity!!
Homa

Monday, 2nd April 2007 at 4:13 pm

Lauren
The doctor I am supposed to go see at Mayo is also dr. Service. I just have to fill out the package they sent me and schedule an appointment. or let them fit me in. I think I will do it after April when things settle down a little bit. don’t let what happened to me worry you. It is important to stay positive. It was my worse fear, but I would still rather go through all that to at least TRY to resolve this situation. I am confident they will find it at Mayo though. Thank you for sharing with me what you snack on. Any tips helps. Let me know when you are going to go to Mayo. I will keep you posted. You had asked me a question last week and I forgot to answer it, sorry. I live in Charlotte North Carolina. so i am not close to minnesota either.

Aileen
Thank you for sharing what you snack on at nights. It sure helps to see how other people are coping with insulinoma and how everyone is managing it. At least we try to manage it to the best of our abilities. Good luck with your doctor appointment and hope that they would chose the least invasive procedure. The important thing is that they have localized your tumor.
Good luck

Peggy
I am sorry to hear about your episode. I have blacked out before and could barely remember what had happened, but they have always been able to feed me something to wake me up. Your blood sugar was very low. The lowest my blood sugar has been documented is when I went for glucose tolerance test five years a go. Of course I had to go fasting, and I was ok when I walked in the doctor’s office and later found out my blood sugar was 29. When I went back the next time, the nurses were astonished that I was functioning normally at 29. Wonder how low it goes when i have an eposode.
I kind of had a mild episode today. didn’t really black out, but I slowed down. took me for ever to do simple tastks, but all in all not too bad, considering it could have been a lot worse. You have been dealing with this for a long time and I hope you will be able to have it taken care of soon.

Jon
I wanted to thank you for posting this coment board. It has been such a valuable resource and a source of comfort knowing that there are others who understand what we are going through. I wish I had found it beofre I had my first operation. I did so much resarch trying to find out about recovery after surgery. Since I had never heard of anyone else who had gone through this. I did not know what to expect. Next time when i go in for my second and hopefully successful surgery I will be more prepared thanks you

Best of luck to everyone
Homa
Peggy

Monday, 2nd April 2007 at 5:44 pm

Thanks Lauren,
My husband doesn’t check my sugar when I get that low, I think he’s to nervous trying to decide whether or not to call the paramedics. It took me years to get in the habit of checking my blood sugar often. I have a perscription for enough strips to check it 8 times a day. Have you trained your husband to do it for you? He really needs to. At least to bring you the monitor a few times a day. My daughter does that for me.
My doctors won’t confirm this, (just regular G.P.’s) but while taking the diazoxide, I have frequent bladder infections. I’ve wondered if this is because of water retention? I wake up with huge bags under my eyes because of it. That is so attractive. When i first tried to go off Diazoxide, I had like a rebound effect. I got real low, so be careful. I’ve always had a liquid form rather than the tablets, but it does not raise my sugar that much. Maybe you could be on a lower dose that would not cause so much water retention.

Aileen,
Insulinoma for 30 yrs! I don’t feel so bad anymore. I wonder if they ever record how much brain damage is caused.

Has anyone ever read that someone could have a hypoglycemic seizure if their blood sugar was only 60? Does anyone have an experienced Endo that wouldn’t mind answering that question? I have a neighbor who has hypoglycemia, and has just recently had two seizures. The last time they tested her sugar at 60, which is low for having just had a pasta dinner. They haven’t found a cause yet…how weird would that be?

Homa,
I’m eating oatmeal before bed! It’s difficult since I am always full,but a good idea. I can’t remember if I already asked you this, but has anyone suggested nesidioblastosis? (sp?) I’ve read that there has been a few adult cases. They might have to take part of your pancreas to find out, which I am not too willing to do.

Susie,
I’ve only gained about 15lbs. Maybe I have a lower insulin output? I wish I could find my records. My mind (and house) has gotten so disorganized since this disease.
After I read your last e-mail, I had a dream that I met you and your husband. You were very pretty :)

If I had the money, I would throw a big party and meet all of you. It’s a weird bond to have, but I’m glad your there.
Susie

Monday, 2nd April 2007 at 10:06 pm

Peggy,
That would be pretty cool to have a party to meet everyone that has gone through this. You could call it the insulinoma party. I know what you mean about your house becoming so disorganized. Last year I wanted to volunteer and my kids school but they wanted volunteers in the afternoon and that’s when my blood sugar would always drop. I was always to scared to volunteer because I would have to pull out a snack or if the snack wasn’t enough I might start acting real funny. So I never did it. It starts to overtake your life. Forget about traveling, can you image being stuck in a airplane, one would have to take so many snacks with them or tons of sugary foods.
Hopefully you’ll get your’s taken care of soon.
Every afternoon now when I’m so hungry and don’t eat anything I don’t have any more blood sugar drops, I’m back to being normal again. That’s when I would really get hypoglycemia, every afternoon between 3:00 and 4:00, my body was like clockwork. I never went anywhere without a small carton of orange juice.
Well take care.
Peggy

Tuesday, 3rd April 2007 at 7:56 am

ST,
I forgot to tell you that I have been praying for your wife. I’m sorry it has been such a long difficult road for her. I’m not sure I understand, the stricture and atrophy,
how would her pancreas be able to drain? My mother had the intestine to duct procedure and is on her third week of recovery. She seems to be healing properly so far. Hopefully the right option will occur without the need for a distal pancreatectomy. Please keep us informed.

Susie,
I tried to continue with my lifeline vacation every year, which is yosemite. But I always have an episode. One year they couldn’t wake me so they took me to the hospital. Last year they had to call the paramedics. The time before that we made freinds with a doctor there, who was looking for a site and got one next to ours. I think the problem for me is the altitude. But I will never give up our trips there.

Homa,
I just got your comment. Thank you. I get by with keeping rice milk with me. I am constantly drinking that all through the days.

Helen,
Nice to hear from you again.
Lauren

Tuesday, 3rd April 2007 at 8:49 am

Homa,
Thanks, I’m still waiting to get a packet and its driving me crazy, I have suffered with this for so long now that I have a solution I want it done ASAP!

Do those of you that eat carbs, oatmeal, rice milk, whatever to sustain, do you eat a source of protein as well? Or just the carbs? I was always told that I needed the protein to keep me going, of course these were the same people that told me my problem was strictly dietary!
Susie

Tuesday, 3rd April 2007 at 10:20 am

To Laura,
My doctor told me to eat a small sweet potato in the afternoon when my blood sugar would drop. This really helped me. It’s a complex carbohydrate.
Lauren

Tuesday, 3rd April 2007 at 11:42 am

Thanks so much Susie I will try that! That’s much better than peanut butter and cheese as far as calories!
Peggy

Tuesday, 3rd April 2007 at 3:30 pm

Lauren,
Great idea from Susie, I’m going to do that too. I always appreciate suggestions,even though I should just be able to figure these things out. You know, I’ve always know about how protien is suppose to be a slow source of sugar, but it doesn’t seem to help me at all. When I have protien with a meal, I drop just as quickly. The only thing that works is high carb! although it has to be a complex one with a quick source to get me up and then last any lenghth of time. I know it goes against all the dietary rules, but I think that’s because the insulin output is constant regardless of what you’ve eaten. However I still try and have small portions of protien often.
Lauren

Tuesday, 3rd April 2007 at 3:52 pm

That is definitley true. I’ve been gaining weight like crazy and I’ve generally always been a skinny person but over the last few months I can’t stop gaining because I’m eating round the clock. I think I will try omiting some of the cheese and other protein and try relying more on oatmeal and whole wheat crackers! and of coarse, sweet potatoes! Maybe that will help.
Susie

Tuesday, 3rd April 2007 at 3:56 pm

To Lauren & Peggy
My doctor recommended the sweet potato. My kids have so many activities after school. I would microwave one, poke holes in it first then I would wrap it up in foil, sometimes I would put a little Smart Balance on it, take a plastic spoon with me and eat it in the car while taking my kids to there activities. The sweet potato would hold me over until dinner. Also on The Oprah Winfrey Show she had that Dr. Oz guy, he said the sweet potato is the most perfect food, tons of fiber, Vitamin A, folic acid.
Let me know how it works for you. When you have severe blood sugar problems like we all do and did, protein doesn’t help. A complex carb is the best thing.
Good luck!
Susie
Homa

Tuesday, 3rd April 2007 at 5:04 pm

Susie
Thank you for the great suggestion with sweet potato. I will definately give it a try.
If you guys have any other good complex carb examples, please share them. As much as we have to keep snacking and eating regularely. I am sure we could use new suggestions and new food to try.

Peggy
That is neat that you eat oatmeal before bed too. I like it because it is hot and comforting and as funny as it may sounds it doesn’t require much chewing. It is hard enough to eat somethng before bed. so I try to make it as simple as possible, lol. I eat the oatmeal and couple of spoons of peanutbutter before bed. I have never heard of that disorder that you mentioned. goodness, i can’t remember what it is called. I resarched it on the internet. I don’t think that is what I have. I started having symptoms when i was in my 30’s. But I will be sure to bring it up with my doctor.

Lauren
I agree with Peggy and Susie that we need more complex carb than protien. Before I was diagnosed with insulinoma. i was trying to eat mostly protien specially before bed, and I would end up having an episode. for a while I thought I was alergic to eggs. I would eat eggs or eggs and sausage for breakfast and then an hour later my sugar would drop very low and I would have a major episode. I was told later on by my doctor that in the morning, my sugar was probably low and I needed some carb to bring it up. from whatever I have red on insulinoma it states that we need more food rich in carbs, be it complex carbs of course. Since we produce so much insulin. I miss just haivng a salad for lunch. I know if I do that right now, i would be asking for trouble.

Best of luck to everyone
Homa
Susie

Tuesday, 3rd April 2007 at 5:18 pm

Lauren,
I could never eat eggs in the morning, I would always get hypoglycemia. I always had oatmeal in the morning.

Susie
Lauren

Tuesday, 3rd April 2007 at 9:34 pm

Wow that explains a lot. I was wondering why 3 eggs and a piece of wheat toast would only last an hour or so!

Homa- I eat a huge (I mean obnoxiously huge) salad for lunch and I put a can of drained and rinsed black beans on tops. Beans are one thing that will hold me for hours I guess its the fiber and they are a complex carb. I started eating beans for breakfast for this reason.
Susie

Tuesday, 3rd April 2007 at 9:41 pm

Lauren,
Beans are an outstanding source of complex carbs. I would eat hummus for my lunch with some pita chips and a salad and I never would have low blood sugar problems.
Peggy

Tuesday, 3rd April 2007 at 11:43 pm

You guys are right on. Beans and hummus are my favorite carbs! I had a taco salad for dinner last night with a little chicken and ton of black beans and corn mixed in.
I had something before I went to bed too, but my husband said I was acting scary around 4:00 a.m. and had to get me to drink some milk. I don’t remember. Usually that works well, but not always.(I should have had a sweet potato) I remember thinking I had a problem with eggs too, I still wonder.. I drop pretty fast after eggs, even with a few potatoes and toast.

Homa,
I miss those salad lunches too…someday.
nesidioblastosis, I think,is just an abundance of over
active cells in your pancreas. I know it’s a disease that affects babies, but I’ve read that there have been a few adult cases. I wonder how rare that is? If I find that site again, I’ll let you know. Hope that packet comes soon.

Aileen,
Are you still waiting for a surgery date?
Aileen

Wednesday, 4th April 2007 at 8:27 am

Peggy,

Yes, I am still waiting on a surgery date, but should know something more concrete after I meet with the surgeon next week. My endo indicated that the date should be in the next couple of weeks, which is both exciting and scary at the same time. I guess that it’s important to get the tumor out as soon as possible, since it already large (1.8 x 2.2 cm). Has anyone heard about the growth rates on these things?

Also, regarding the brain damage question: I asked my endo about that, and she cited a study involving hypoglycemic patients, and permanent brain damage could not be substantiated. However, I have this feeling that short-term memory loss is becoming more of an issue with myself. I have always had the ability to remember minute details of my daily activities without needing to write lists, but I have found lately that I am unable to do this so well. I am forgetting things ALL the time now…very frustrating! I guess this makes sense, since if I am walking around with a glucose level of 40, my brain is getting about half the sugar it needs to function properly. Anybody else having issues with this?

Also, with all this discussion of food, I was wondering if anyone has had experience with the “frequent small meals” plan. My endo advised me to follow this regimen, as it would keep me going stronger throughout the day, and would possibly reduce some of the weight gain. In other words, taking a normal-sized meal for breakfast and splitting it into 2 or 3 portions, to be eaten throughout the morning hours. I find that I am having an extremely hard time following this pattern, but it makes sense.
Brendan

Wednesday, 4th April 2007 at 9:01 am

Aileen,

Anecdotally, I definitely think my short-term memory has been affected. It’s obviously impossible to quantify, but I also have more difficulty with things that have always been fairly easy for me (like typing and spelling). I’d been undiagnosed or misdiagnosed for over five years, but only for the final three did I have blackouts and confusion. Prior to that, my symptoms were frequent migraines that I could treat with Imitrex, a migraine medication. It turns out that low glucose can trigger migraines, but I had a family history of them, so they chose to just treat the symptoms.

I definitely followed the “frequent meal” plan, but they ended up becoming “frequent nearly-full sized meals” as my sugar levels would drop precipitously if I couldn’t keep up. As frustrating as the PICC line was, it allowed me a normal schedule. Do you have a glucose test kit? My strategy initially was to test myself every hour to find out how quickly my levels dropped, which gave me a baseline expectation of how frequently I needed to eat (and how quickly certain foods raised my levels).

Brendan
Helen

Wednesday, 4th April 2007 at 2:50 pm

Aileen,

I agree with your endo with regards to permanent brain damage. I had all the common symptoms as my consultant listed of blurred vision, palpitations, sweating and weakness, as hypoglycaemia produces adrenaline which causes these effects.

The lack of food to the brain results in the signs seen which usually are periodic. Other signs are: depression, lethargy, blankly staring with poor response to sound or touch and periodic weakness. More severe signs are stupors, seizures, severe weakness, and coma/irreversible coma.

I know I struggled with concentrating and always double checking with myself or colleagues on my spelling. Whilst in conversation I would forget what I was talking about or why I was talking about it - not very nice.

I also experienced 2 episodes where I collapsed with the second episode I lost consciousness; this was bought on by exercising.
Helen

Wednesday, 4th April 2007 at 3:05 pm

Hi Lauren,

I think that following the low GI diet is possibly a solution as it helps to maintain sugar levels as we need ‘good’ carbs - plenty of whole grains such as barley and oats, dried peas and beans, root vegetables and whole fruits to maintain the sugar level. However I am not suggesting going on a diet just maybe including these in your daily diet and also eating every 2-3 hours. Also keep glucagon/glucogel for an emergency.

When I was in hospital for testing before I had my 72 hour fast as I was in a local hospital prior to going to Barts in London to endocrinology, they (local hospital) suggested I eat loads of carbs, I was eating (per day) 2/4 jacket potatoes, biscuits, toast with jam and porridge in the morning and I was still having hypos & sick of eating, eating & eating, plus I had put on about 4kgs (8.8 lbs). Then I met someone who suggested I try maintaining my sugar level by ensuring I have bran, fruit, lentils & seeds etc in my daily diet.

I did try to post this yesterday with some website links but I don’t think it’s allowed. One of the sites I tried to put on was a BUPA website with some info on, so go onto bupa.co.uk website and look in health information, then diet & nutrition, then The long slow burn. This has some useful tips and ideas.

Hope this is of some use.
Helen
Peggy

Wednesday, 4th April 2007 at 9:37 pm

Aileen,

Short term memory loss is definitely a result of low sugars. Short term memory loss is definitley a result of low sugars. (just kidding) I noticed it the first year I was diagnosed, though I remember having symptoms of hypoglycemia years before that. It’s gotten worse through the years, but now it’s blamed on my being 48 years old.

Good luck with those frequent small meals. Before this problem I ate very little so it took a long time to get use to eating every 2 hrs. I use to complain about it but it’s hard to get sympathy from people because you have to eat. They would always say, “I wish I had to eat all the time.” You get use to it though and it really is the best way.

That really is a good sized tumor. I think the growth rate must be pretty slow. I’ve had it this long and it still is too small to see. Although, my last test was a year ago. We’ll see what shows up this time.
Only two more weeks! I am excited for you, though I would be feeling nervous as well. I keep thinking I would like to gat prepared physically before I have surgery. I’m not as healthy as I use to be. It’s great you are taking care of this while you are young. Stay strong and think positive.
Lauren

Thursday, 5th April 2007 at 8:16 am

Thanks Helen - very helpful.
I’m curious those of you who had surgery-do you find yourselves eating a lot less or skipping meals? I am dying to be able to not eat. I’m sick of eating! I am so ready to lose some weight but I just can’t! If only I could exercise but any decent calorie burn drops my sugar really quickly. So then I have to injest more calories to get back up. So why bother? Its a vicious cycle! My pants are getting really tight!
Aileen

Thursday, 5th April 2007 at 9:04 am

Brendan,

With the description of some of your symptoms, I recognize parallels with my own: I also find myself scanning my e-mails over and over again to make sure that I haven’t misspelled anything or repeated myself. I think the short-term memory loss is one of the things I have the most difficulty with, since I used to take my cognitive skills for granted…not anymore!

Yes, I do have a glucose meter, and over the last couple of months, I have found that it takes longer for food intake to induce a rapid increase in detectable sugar levels. For example, if before dinner my glucose reading was 38, a half-hour after dinner it might only be at 42. It just seems like before, intake of sugar in any form had an almost immediate effect, but this no longer seems the case. I have also tried this with juice (which generally has had the greatest immediate impact on my readings) and the effect is similar. I will definitely continue to watch this, though.

Helen,

Exactly…like I explained to Brendan above, I am always double-checking myself these days. I know I have probably repeated myself to friends and colleagues or asked them to reiterate things…I feel so bad about this, but at this point, I have been pretty open with everyone about what is going on, just so they can understand these problems a little bit better when they come up.

I also have had a couple of bad bouts of hypoglycemia while exercising, which is why I have taken a hiatus from everything except walking (and even with that I bring an emergency granola bar and juice). I used to run and bike on a regular basis, but before I was diagnosed, I was just having too many scary episodes with moderate/heavy exercise…it’s a shame, but at this point, I feel like it is too much of a risk to continue.

Peggy,

I was also not much of a snacker before these episodes started coming on, so I am finding that it is difficult to make the switch. Like many of you all have mentioned before, I too enjoyed eating salad on a regular basis for dinner, but I have found that it is just not conducive to keeping my sugar up at night…not having to eat all the time is one of things I am really looking forward to after this operation!

Thanks for your kind words regarding the surgery…I will keep everyone updated with the time/date. When do you go back to look for the tumor? I can’t remember all the details of your earlier conversations, but have your doctors ruled out the possibility of MEN-1? Apparently, that genetic disorder induces multiple small tumors to grow in the pancreas, often too small for the ctscan to pick up. My doctors initially tested me for this, given my family’s history of thyroid problems. Good luck with everything!
Susie

Thursday, 5th April 2007 at 9:51 am

To Lauren,
Since having my surgery I have lost 24lbs. I had my surgery on February 2. Yes it feels great not to have to eat all the time. I eat a bowl of cereal in the morning and then don’t eat anything between breakfast and lunch. Lunch time I only eat a tiny bit, a bowl of soup and maybe a piece of fruit. You will be a new person after your surgery. Yes I have skipped meals and nothing happens to me, back to normal.
Good luck with everything!!
Lauren

Thursday, 5th April 2007 at 10:13 am

Susie, thats what I wanted to hear! Sounds too good to be true, I can’t wait!!
Aileen

Thursday, 5th April 2007 at 10:23 am

Susie,

Just out of curiosity, I was wondering about the details of your surgery…could you tell me a little more about it? If I remember correctly, your tumor was located at the head of the pancreas (just like mine). I haven’t spoken with my surgeon yet, but my endo said she would have preferred the tumor in the tail, since the head location can lead to other complications. Did your doctors mention why they decided to remove a section? And has your recovery improved? I was just wondering, since I will be going through surgery (hopefully) soon.
Brendan

Thursday, 5th April 2007 at 10:28 am

Lauren,

I also lost weight after surgery - and it was an incredible relief to not have to be constantly aware of where I could get carbs/juice/whatever on a moments notice. As I’m sure you’re aware, the psychological stress of knowing your blood sugar could make you, well, “crazy” at any moment was pretty hard to take. All told, I’ve lost 20 lbs since surgery a year ago and have no particular food cravings anymore.
Susie

Thursday, 5th April 2007 at 10:58 am

To Aileen,
Yes my insulinoma was at the head of my pancreas, but when my surgeon went in they couldn’t find it, but they knew the location of it so that’s when he took a piece of my pancreas out. I went into surgery with my blood sugar below 60. So when he took the part of my pancreas out with the insulinoma on that part, my blood sugar shot up to 119. Yes it was a very bold move, but my surgeon is highly skilled and one of the best in the country for pancreatic surgery. The only side effect to all this is the drainage deal, i’m still having drainage but it’s finally slowing down.
The surgery is no piece of cake. I had a NG tube down my nose for 4 days, horrible, never had anything so awful in my life, and couldn’t eat for 10 days, since my surgeon wanted to give my pancreas a rest. I still sleep on my back, just started sleeping on one side but still uncomfortable. But I guess we all have to go through this not to have horrbile blood sugar problems anymore.
I have been walking a mile everyday for the past week, so I guess I’m making some progress. I’m taking the dog to the vet for her checkup and we’re going to Opening Day to the Padres tomorrow. So yes my life is almost back to normal.
But now I don’t have to worry about always bringing my orange juice with me and my Nutrigrain bars everywhere I go. I can let myself starve if I want to plus I have a new body, much thinner.
When is your surgery?
Angie

Thursday, 5th April 2007 at 11:42 am

Lauren

I know this may sound hard but dont let this take over your life!

When I felt low I tested my blood and kept it in the back of my mind, I carried around a cereal bar and if at any time I felt slightly odd Id eat it.

I battled with my weight all the way through the last two years as things got more difficult to lose weight and when I was diagnosed I still went to my slimming classes and maintained rather than lost. I still ate salad but made sure I had some cheese or complex carb as well. Make sure you are eating a healthy diet with emphasis on the complex carb - which is basically recommended for a healthy diet anyway, also carry snacks with you at all times.

Eggs/protein will not make things worse, it means something else is needed at that time to boost your sugars. The fastest way to get glucose levels up is to eat sugary foods but this will give you a see-saw effect and the highs will be too high followed by a rapid drop that is why they recommend complex carbs. However in emergencies as in a diabetic hypo a mars bar is the recommended treatment! - Ideal for Peggy!!

My doctor only said test my blood if I felt I needed to as it would take over and become neurotic about it. Unless you have had the blackouts that Peggy has, be aware but dont get too scared to live.

It is good now to think that if I miss breakfast or eat later I wont have a low! It is also hard when you have had the worries in the back of your mind for so long that suddenly you dont have to worry anymore!

I would like to say if you like chocolate too much before the op - you still like it afterwards!

I can go back 10 years with various symptoms that could be attributed to this that I just lived with thinking it was just me and my querky body so it is good to feel normal suddenly. The tumors are supposed to be very slow growing. However if they grow substantially they will remove them straight away as this could mean something more sinister.

Peggy

Why are you having to deal with such terrible symptoms. Why are you not a priority!
Surely they should start trying to sort it out and not send you home. I dont really understand how your medical insurance works and why you are not under care now. This isnt just a hypo that most of us have suffered it is an extreme danger to your life.
Lauren

Thursday, 5th April 2007 at 12:21 pm

Thanks so much Angie and Brendan that makes be feel so much better. I only wish I had been more agressive in a diagnosis years ago, all this time wasted when I could’ve been a better wife and mother, instead of going through life “out of it”, in a daze and cranky!
Brendan

Thursday, 5th April 2007 at 12:28 pm

Lauren - Trust me, I have a whole new perspective on medical care after being undiagnosed and misdiagnosed for so long. Even if you’d have pushed it with a general practitioner, most of them are inclined to diagnose with the most obvious problem (typically something neurological). The statistics on insulinoma sufferers point to them being treated for epilepsy quite often, which was the case with me. Additionally, even when blood draws are done, we can find ourselves with blood glucose levels that fall on the very low end of “normal” if we’ve just eaten a meal, so the people interpreting the results just ignore that element of the report.

Hilariously, I was only diagnosed properly when my cousin, who is both a GP and a ferret enthusiast, suggested that I should look into the possibility of a pancreatic tumor. That got me to my first endocrinologist after two years of epilepsy treatment. I’m happy you’ve finally gotten to a point where you know what’s going on!
ST

Friday, 6th April 2007 at 4:42 am

Thanks for your responses.

Susie,
I saw in this thread that you were operated on Feb 2 and in a recent post that your drainage is still happening. How much is it draining?

All,
I was getting a bit joyous last week as my wife’s drainage was in the 20-35 cc and thinking stricture was forming. But, suddenly it has shot up to 70 cc the past 3 days.

As for her earlier eating habits (she was undiagnosed at the time), my wife used to carry granola/oatmeal bars. There were days when I found her sweating/shaky in the morning, I would give her a glucose drink first thing which became almost daily during Nov/Dec 2006. In her 2 year history of symptoms, she gained significant weight only in the last 3-4 months before surgery. This was the period she would get early morning seizures / unconsciousness when I used to call an ambulance to move her to the hospital.
ST

Friday, 6th April 2007 at 5:00 am

Brendan,

In my wife’s case too, she was diagnosed with idiopathic epilepsy. In some sense, I triggered the diagnosis of insulinoma. What I derived after watching her on a day-to-day basis and of her symptoms and scouring the web, I felt she had fasting hypoglycemia. I raised this with the doctors as I was not sure if this was her disease/condition or something else was causing it. When in US, doctors shot this down as her blood glucose was normal whenever we visited them. While in India, though initially the doctors felt it as a case of idiopathic epilepsy, as I raised questions of fasting hypoglycemia, they put them together and eventually were able to diagnose the insulinoma. Her first couple of seizures/unconscious episodes, after IV dextrose, she was just a day in the hospital and sent home. After the 3rd seizure and also since the neurosurgeon was a close friend of mine, he began consulting various specialists to determine her problem.
Susie

Friday, 6th April 2007 at 10:28 am

To ST,
My drainage right now is hardly anything. I wear a couple of gauze bandages with tape and change them every 4-6 hours. My surgeon gave me a statin drug, you have to inject it 3 times a day to dry up the drainage. It was a 2 week dosage.
Your wife should be on a very lowfat diet if she is having drainage problems. My surgeon told me the drainage can come in waves. for a few days I won’t have anything then all of a sudden it will start up again. My drainage has really slowed down so I’m hoping it is finally coming to an end.
Peggy

Friday, 6th April 2007 at 11:07 pm

Wow, I know I wrote 3 paragraphs earlier today and sumitted them - but they’re not here! Do yo think this is short term memory problem? :o I’ll try and remember what I said in the morning.
Peggy

Saturday, 7th April 2007 at 11:38 pm

Angie and Lauren,

Reading your last comments gave me the -I needed to call my doctors and try to get things moving. I was on the phone for an hour before I finally broke down. It’s so difficult to play their game, and it is a game with my insurance. They leave the ball in my court, and for some reason that I can’t explain, I can’t seem to get the ball rolling. I have an appointment with my new GP on Thursday, maybe she can give me some answers.
At first I use to work out three times a day and I just took diluted juice with me, which worked well. I remember bike riding and once I went over the handle bars! Since then I stay on the ground. I’ve tried to find someone to walk with me, but to no avail. For some reason I can’t seem to do it alone. Somehow I’ ve lost the motivation to exercise at all since then I know I’m not the one to talk, BUT, you will feel so much better if you do it. And remember there’s a lot of health benefits besides just losing the weight. Your heart for example.
Lauren, just think of the future, you have a lifetime of good memories to make with your family.

ST,

How long before they know if your wife will have to have surgery? How is she dealing with all this, is her faith strong?

Everyone,

HAPPY EASTER…keep the faith!
ST

Saturday, 7th April 2007 at 11:54 pm

Susie,

My wife also is on the somatostatin injection (octeotride) thrice a day. She has been on it for almost 3 weeks. She was on the same drug right after the surgery for couple of weeks and then it was discontinued for a while. Her diet is also a very low fat diet.

Her drainage problem is more due to her pancreatic duct cavity as it is not healing/closing.

Good luck with your healing and wishing you a speedy recovery.

As for people who get to have a major portion or the total pancreas removed, there is a procedure called islet cell transplantation (donor cells) or auto islet cell transplantation (own cells). This is mostly in clinical trials and very expensive (>US$150K). In some cases (total and major pancreatectomy I think), insurance does cover but post transplant costs can still be expensive due to the high cost of immunosuppressive drugs. Some hospitals do offer financial assistance as it comes under clinical trials. Very few hospitals are centers of excellence for this (Univ of Minnesota Hospital, Northwestern Memorial Hospital in Chicago, Univ of Miami School of medicine, Univ of Alberta in Edmonton Canada, Univ of Leicester hospital in UK and Kyoto Univ hospital, Japan). There are other hospitals that are doing the trials but the above are considered to have more experience. The islet cell transplantation eventually could end up as a cure for diabetes. As of now people who lose a major portion of their pancreas end up diabetic and their own cells can be transplanted instead of seeking a donor.
ST

Sunday, 8th April 2007 at 1:10 am

Peggy,

From the looks of it, my wife requires surgery again. When it will be done depends on her drainage reducing to a much smaller amount and also how well her duct heals. About 2 weeks ago, the doctors had said we will monitor another 2-4 weeks or so before a decision on which type of surgery. She is in her 3rd week on this pigtail drain and we still have to wait as the drain has not gone down. Depending on her duct healing, there are 2-3 possible surgery options. If there is no healing, a major part of her pancreas would have to be removed which they are trying to avoid. I am also in touch with the Univ of Minn hospital and checking to see if something can be worked out.
Angie

Sunday, 8th April 2007 at 4:12 am

ST

Ive been following your posts concerning your wife and her problems. When my surgeon discussed my surgery my tumor was 2mm away from a small duct and he warned me that he would have to do the whipple operation as it may have breached the duct. He did not seem prepared to cut into the duct as it would seep pancreatic fluid. He didint mention it possibly healing but was taking the ’safest’ option.

I think your wifes surgeons have taken this option to avoid removing a larger part of the pancreas and perhaps doing the whipple as it seems to be such a large operation in comparison.

Im only guessing here but while my surgeon played down the whipple op others have been quite horrified to hear I may have had to have that done. Its so hard to make guesses when we know so little about the surgery and the way they all work.

It would be very interesting to get one of those surgeons on this site to comment tho the poor guy may be un-indated with questions!!!! -

Jon what do you think?

Good luck ST!
ST

Sunday, 8th April 2007 at 5:32 am

Angie,

Whipple is done if the lesion/tumor is on the head of the pancreas. It is considered major surgery. At the same time, there are experienced surgeons who would have done quite a few. In the past, it might have been considered complex (still is), but with improvements in technology and lots of experience, it is done with great success.

If a lesion is on the tail, then distal pancreatectomy is done (in most cases, laparoscopically too) and comparatively minor to other pancreatic surgeries.

In my wife’s case, as the lesion was on the body part, Whipple is not needed/advised. Based on location if lesion was on the top or bottom side, it could have been a ‘V’ or inverted ‘V’ resection or just an enucleation. This could have been done laparoscopically too. Unfortunately for us, not only was the lesion in the middle of the pancreas in the body part, it was pushing against the duct too. If distal pancreatectomy was or is to be done, her pancreas till that part and possibly spleen would be removed. So, the attempt to just remove the lesion. The pancreatic duct healing on its own is a toss-up because the oozing juices/enzymes do not allow for healing from what I have read and also takes quite some time (months/weeks instead of days). In our case, in spite of her getting a vast amount and various antibiotics and very careful care, she developed infection which made the healing of the duct impossible.

Peggy,
My wife does feel depressed at times in the sense that if she will ever get better, as there were a few Whipple procedures and even organ transplants done by her surgeon and they were discharged after recovery. She had comparatively less complex surgery but still not healing.

She misses the kids the most. As the hospital we are in is famous for multi-organ transplants in India (and they do handle quite a few transplants), kids under 12 are not allowed (for the safety of the kids in fact with regards to infection). If I am with her, she is cheerful and looking forward to recovery. So, I have taken extended absence from work to be with her. Kids are allowed to visit once in a while as an exception in our case and they did so couple of times.
Lauren

Monday, 9th April 2007 at 9:06 am

Does anyone know of insulinoma removal being done at M.D.Anderson in Houston TX? My doc referred me here and also to Mayo. I know Mayo are suppoesed to be the experts but Houston is 10x closer for me.
Susan

Monday, 9th April 2007 at 10:26 am

My 82 year old mother has insulinoma, and I was glad to find a community of non ferret patients who are sharing their experiences. My mother’s surgeon recommended against surgery due to her age, so she treats herself by eating at regular intervals, including the middle of the night (the prescribed medication has bad side effects for her). It takes her all morning to get her blood sugar level high enough to be able to legally drive. As a result, she is gaining a lot of weight. This is bad for her in many ways, and there is no end to the weight gain in sight. She had a mild heart attack last year and gets winded easliy with the mildest exertion. I was searching for information on diet which would maximize her sugar level, but would minimize her weight gain. She has been told to concentrate on complex carbs and protein to achieve long term stability, but those carbs lead to much weight gain. Do you think surgery should still be an option?
Lauren

Monday, 9th April 2007 at 11:56 am

As a followup to my question, the surgeons at MD Anderson have listed under their expertise on their website, endocrine neoplasms, non-functioning pancreatic islet cell tumors and MEN but I don’t specifically see the word insulinoma. Isn’t insulinoma a functioning pancreatic cell tumor? Should I be concerned? They have scheduled me an appointment. One of the surgeons there did do her surgical residency at the Mayou in Rochester but from what I know so far its really important to find a surgeon who has specifically removed a lot of insulinomas.
Lauren

Monday, 9th April 2007 at 3:02 pm

Susan, I would say surgery is still an option. Does she know where her insulinoma is? Becasue that makes a big difference on how severe the surgery would be. From what I’m reading here if its in the tail and could be done laproscopically then the surgery might not be that bad at all.
Susan

Monday, 9th April 2007 at 4:52 pm

I don’t think the Xray actually showed them, but the doctors are quite sure they are there because she has all the symptoms of insulinoma. It took a while to get the diagnosis, though.
Lauren

Monday, 9th April 2007 at 7:43 pm

Susan, if I were you, due to her age, I would get more insulinoma specific tests done, endoscopy, oestricide-I know I spelled that wrong. Xray is definitely not good enough. Get the exact location of the tumor and then decide what your options are.
Susan

Monday, 9th April 2007 at 9:47 pm

Thank you for your advice, Lauren. I will see exactly what she has had done.
ST

Tuesday, 10th April 2007 at 1:07 am

Susan,

I am not a doctor. Given what my wife has gone and going through, I have read a lot on this medical condition.

XRay cannot determine insulinoma. Further tests like the fasting glucose test, insulin levels and C-peptide will reveal insulinoma. Then a combination of endoscopic ultrasound, CT scan and/or octreoscan can help localize the tumor. If the tumor can be successfully localized and if and only if it is on the tail of the pancreas, laparoscopy surgery (which is considered minimally invasive) might be an option in her case. In most cases when laparoscopy is decided, doctors still may have to make a decision on open surgery during the surgery itself (due to various reasons one of which could be excessive bleeding). So, the doctor/surgeon would have to make the final decision given your grandma’s age and the past history of heart attack.

Minimum I would suggest is for her to see a gastroenterologist.

Lauren,

Insulinoma would fall under endocrine neoplasm. It is a functioning pancreatic islet cell tumor. Functioning tumors secrete or produce excessive enzymes/hormones. Non-functioning tumors may just block something and/or rupture/bleed. MEN is a syndrome which implies multiple tumors instead of a single tumor.

Once again, I am no doctor. The above is based on the information I have read/gathered.

Some detailed information here: http://www.emedicine.com/med/topic2677.htm
Lauren

Tuesday, 10th April 2007 at 11:39 am

Thanks, ST, that was most helpful!!
Susan

Tuesday, 10th April 2007 at 11:47 am

Ditto. Your comments are greatly appreciated! I know my mom has had many tests done, just not which ones. They are quite sure it is insulinoma and she now wears a bracelet stating that. The paramedics who came to the house once when she had passed out didn’t know what insulinoma was. She perks up immediately with a glucose iv.
Peggy

Wednesday, 11th April 2007 at 6:57 pm

ST,

It’s good that you can be with your wife, I’m sure that and being able to see her children will help her to heal more quickly.

Susan,

The only thing harder than having this disease would be to have to watch someone you love struggle with insulinoma.
I assume she has already had a CT or MRI. Just be sure that her doctor has experience with insulinomas so you can be confident with their decision regarding surgery. As most of us can tell you, it is very difficult trying to manage these episodes with food.
My mother is 84 years old and is recovering from pancreatic surgery she had 3 weeks ago. She did not have an insulinoma, but the surgery was similar. She is doing quite well. The hardest part for her was getting back to eating enough. She lost quite a bit of weight.
I will be going for another endoscopy soon, since they haven’t been able to locate mine yet either.

Aileen,

How did they test for MEN-1?
Aileen

Thursday, 12th April 2007 at 8:52 am

Peggy,

Since MEN-1 is a genetic disorder, I think family history can play a big part in the diagnosis (i.e., cases of hyperparathyroidism, pancreatic/pituitary tumors). In my case, I think the doctors were able to rule out the possibility of MEN-1 since my calcium levels were normal (if MEN-1 was an issue, the calcium would be abnormally high).

All,
My surgery is next Thursday!! Having finally met my doctor, I am at least relieved that he is so experienced with insulinoma surgery, but it is nonetheless scary. As I expected, it will be an open surgery, since the tumor is located at the head of the pancreas. And as I am sure many others have experienced, there is no guarantee that the surgery will be a simple enucleation. He seemed pretty confident, though, that he would be able to remove the tumor without taking part of my pancreas, but it is impossible to say now if the tumor, for example, is not imbedded in a pancreatic duct (I guess this is when an intestinal tract must be sewn into the pancreas, no?).

Wish me luck!
Helen

Thursday, 12th April 2007 at 1:27 pm

To Aileen,

The advise that our (Angie & I) surgeon Mr B told us both to prepare for a whipples as you cannot know until they start surgery if it is a whipples or enucleation. It is a year next (18th) week since my op so I know how you are feeling right now, funny really to think about how messed up & scared I felt this time last year & now I am back to normal, it is good news that your surgeon is experienced. I will pray that you have a successful operation and it turns out to be an enucleation.

Best of luck.
Helen
ST

Friday, 13th April 2007 at 4:16 am

Aileen,

Wish you a successful operation and a speedy recovery. My prayers are with you and hoping all’s well.
Aileen

Friday, 13th April 2007 at 8:10 am

Helen and ST,

Thanks for your words of encouragement…I will need them. Yes, it is impossible to say whether or not a whipple operation will be necessary, unfortunately. My doctor thought from the ctscan that the tumor was positioned well (i.e., not near any major plumbing) but he won’t know for sure until going in. Does anybody know the percentage of insulinoma surgeries that end up as a whipple procedure (not like this will bring much comfort, though, given that we have already beaten the odds by getting the tumor in the first place!)?
Lauren

Friday, 13th April 2007 at 8:42 am

Good luck Aileen! I’m jealous! I am going to get testing done to find mine May 7th. I’m just praying they find it. I’m sure you will do fine, you will be a whole new woman after its over!
Debra

Friday, 13th April 2007 at 9:05 am

Hello All,

Just a couple quick questions. I would love to hear responses from anyone who would like to reply. How many of you are Diabetics as a result of your enucleation or partial pancreatectomies? Were any of you Diabetics before the surgery or the onset of your low-blood-sugars? Also…has anyone had their insulinoma symptoms come on directly after delivering a child? And lastly, has anyone had a successful pregnancy after having their surgery? Any complications?

Thank you,
Deb
Brendan

Friday, 13th April 2007 at 10:21 am

Deb,

I had laparoscopic enucleation performed a year ago, and I’ve had no trouble with diabetes. My blood glucose typically ranges from 80-120 depending on my eating habits.

Brendan
Debra

Friday, 13th April 2007 at 3:10 pm

Brendan

Thanks for the reply. You have your blood sugars well under control. I’m happy for you. Thanks again for your response.

Deb
Brendan

Friday, 13th April 2007 at 3:22 pm

Deb,

I’m sorry - I misinterpreted your post. I thought you had yet to have surgery, and were polling to find out how commonly diabetes occurred post-op. My apologies; after re-reading your original introduction here, I realize now that my post was not actually useful.

sorry,
Brendan
Angie

Saturday, 14th April 2007 at 4:38 am

Aileen

I dont think this will be of much help but I had a study sent to me by my uncle in Australia. It covered 247 people over 50 years and only one had a whipple but there were 9 re-occurencies from where I imagine not enough of the tumor was taken. This isnt very current tho and there were a lot of very different scenarios.

I dont think anyone commenting on this site has had one!

I believe the surgeons have to cover themselves so warn you of the worst case scenario, and of course when they dont have to do it you think they are wonderful!

Best wishes and good luck for the surgery - take it easy afterwards and be patient! it is quite a long road to recovery as Im finding.
Kathy

Tuesday, 17th April 2007 at 10:41 am

To All of you on here
I wish you all the best of luck. I have read the entire night to read all the posting and am begining to truly believe after 25 years this is what I am suffering from. The problem is I don’t have a real doctor to work with me and get all the necessary testing. I live in New Jersey and would so much love to hear from you guys as to what steps need to be taken. I definietly have the hypoglycemia but nothing seems to help it I am 50 years old and very sick from all of this so if anyone could offer me any help I would so much appreciate it. Thank you and god bless.
kathy
Aileen

Tuesday, 17th April 2007 at 12:47 pm

Lauren and Angie,

Thanks for your kind words…I am getting a bit nervous, since the surgery is only a couple of days away. And then there is the whole issue of the recovery.

Out of curiosity, Angie, I was wondering if you could tell me whether or not you thought travel would be possible after a certain period of time? I am just trying to make my plans for the summer, and since I work overseas, I have been wondering how long it may take before I feel comfortable in making any trips. I know that every case is different, and I won’t know anything until the surgery is over, but it does bring some comfort in knowing about other people’s situations.

Lauren, good luck with your testing!
Angie

Wednesday, 18th April 2007 at 1:15 am

Hi Lauren

Im planning - have booked to go away with my family 26th may - our whitsun bank holiday week, so that will be just under 4 months from my op on the 6th feb.

As its a family holiday my husband will be there to carry stuff! I feel ok now but its the strains of carrying things and sharp movements that get me. I still have stomach pains frequently which I suppose is settling in pains!! Its sort of slow progress now as I look and walk ok from an outsiders point of view but I think it will be a while till Im totally fit and able!

Im flying again in july with just my kids so i hope ill have a better idea from may how ill get along.

Good luck!
Kathy

Wednesday, 18th April 2007 at 5:25 am

Angie
I am not sure if I am doing this correctly or not I have never worked on one of these forums before but if I need some help is it where I have to ask questions to a particular person or will anyone jump in for some help on her. What is very puzzliing to me perhaps you or anyone reading this is that I have all the horrible symptoms of hypoglycemia but my numbers on my glucose meter are not registering as low on it so I am quite confused. If you or anyone can give me some input as to what could be happening or a direction I could take I would appreciate it. I am glad you are recovering from your surgery and wish you the best of luck and am glad you were finally able to get diagnosed and have your surgery and my prayers are with you and your family for a full recovery.
God Bless Kathy
Angie

Wednesday, 18th April 2007 at 5:48 am

Dear Kathy

Anyone who can help you will jump straight in!! If you have clicked the right button at the bottom of your message you will get an email any time there is any kind of posting - Everyone appreciates messages from anyone!

I dont know if I can help at all with your questions on hypoglycemia. I would imagine if your glucose is not registering as low you would not be classed as hypoglycemic - anyone jump in if you think Im wrong! - If you are experiencing such symptoms that you have read about here but dont have low glucose levels you may have to look to another diagnosis.

If you do not have low sugar levels i doubt they will investigate for insulinoma. Have you had any recent diagnosis from doctors as your sypmtoms cant really be ignored what ever it is.

Im a lucky one as they found what I had before I knew what it meant and before I started blacking out! Im finding out how ill I was now that I feel normal!!!

Good luck, any questions post them and someone will help out im sure and let us know how you get on….

Best Wishes Angie
Aileen

Wednesday, 18th April 2007 at 8:39 am

Kathy,

I was wondering if your symptoms are sporadic…I only ask because when my first symptoms appeared, they were few and far between. In fact, the first time I did a simple fasting glucose test (I stopped eating after midnight and went to the lab in the am to get my blood tested), I registered at 61. Low, but not so low that my GP was alarmed. Hence, it took several more months before I was sent to an endocrinologist and diagnosed with insulinoma. Although I didn’t have a glucose meter when I first started noticing some of the signs, I imagine that my glucose levels (most of the time) were not super-low. It wasn’t until over a year later that the symptoms became more frequent (perhaps indicating tumor growth??). Not sure if you fall into this category, but if your first blood tests come up normal or close to normal, and you are still experiencing the symptoms, insist on doing the fasting test again.

Good luck!
Lauren

Wednesday, 18th April 2007 at 1:52 pm

To those of you that have had surgery how long were you away from work? Just trying to plan.
Brendan

Wednesday, 18th April 2007 at 2:02 pm

I was able to work part-time within a week. Once the drain was removed after a week, I went back full-time the following day. I work at a software company, though, so there was no heavy lifting or time spent on my feet. Additionally, it sounds as though most people have had to have much more invasive surgeries performed, so it’s probably an atypical result.
Kathy

Wednesday, 18th April 2007 at 2:31 pm

Angie
Thanks for the reply. I have been from doctor to doctor but don’t understand how I can be this sick with every symptom of hypoglycemia but my numbers don’t run low sometimes 68 to 70 as the lowest. I also thought about PCOS and perhaps the insulin levels are elevated but the glucose is normal I am not sure just trying to find a place I can get some help and answers. My eyes burn terribly like something is being released into them, the blurry vision, the dizziness, headaches, the constant hunger, maybe the burning in the eyes is caused by a allergie but it all happens together when it happens which is most of the day, I have the terrible cravings for sweets but will only eat no sugar but natural products in my food and no real white flour, I have been basically eating a hypoglycemia diet for quit awhile so I am quite confused also to what is going on. I thought it I posted something someone here might be able to identify with me some of what is going on. I am glad you surgery is done and that you are recovering along with so many others. What you have done here along with Dr. Jon is unbelievable you have made a whole new life for so many people who really had no where to turn I know it was a place I found myself to turn to if you or anyone can think of anything this could be please let me know I will keep posted.
God Less kathy
Kathy

Wednesday, 18th April 2007 at 2:50 pm

Aileen
Thank you for replying also this has really gotten pretty bad and has me so puzzled that someone can have all the symptoms of hypoglycemia but not be registering low numbers. I am waiting for the doctor to send my results on the GGT test to me he said I did something in the second hour not sure what he meant but I thought he said be careful you are going to run into diabetes if you don’t watch what you eat my god I have been eating healthy for years I was quite surprised. I am hoping to get the results in tomorrow’s mail. I am very discouraged I have been battling with for years with so many things, first I suffered for twenty years having been to gastrointerlogist for that many years with so many symptoms of weight loss, nauseau, pains in my stomach and just general pains and had 6 endoscopes and had 5 colonescopies and finally I went from 170 lbs to 114 lbs in six months all that time and all those years it was my gall bladder just wanted to send you something interesting you never know who will need this and let whoever is on this site read the interesting stories of how he does he test differently then most. Anyway he took out my gall bladder and he said I had a deformity in it from birth he traced back my testin and symptoms for over twenty years and says how hypoglycemia and gall bladder can go together but since having it out I still have the symptoms of hypoglycemia if not right now they seem worse then before in certain ways at least I can eat now before I was so sick I could not get out of bed. http://www.docsmed.com/default.htm click on to the picture with the girl in it and also read the articles it is so interesting he does the test different then most doctors I had to travel to him to finally get my gall bladder out and he has people come from all over the world thought my nightmares were over but looks like I have the hypoglycemia pretty bad. I think I could also have PCOS not sure but I have looked up those symptoms and they look like they produce high insulin levels but not sure how the hypoglycemic fits in the picture http://www.ivf.com/pcostreat.html another website that some people might be interested in that mention PCOS and pregnancy.
Thanks Kathy
Sandra

Thursday, 19th April 2007 at 8:10 am

My name is Sandra and somehow I got on to this website I had put into the computer gall bladder surgery and hypoglycemia. I was wondering is there anyone here in this group who has had this happen after gall bladder surgery. I had my gall bladder taken out and it seems like now I have such bad hypoglycemia I have to wonder was it all worth it. If anyone can relate or has had something simillar to this please let me know I am searching for answers. Also if anyone could direct me on how to do a engine search I would appeciate it. I was under the impression if you do a engine search you can put in all your symptoms and come up with some ideas as to what is wrong. Thank you everyone for any input. Also not sure put when you post how do you find out if you have a reply? I was wondering does it automatically send something to your email? Sandra
Lauren

Thursday, 19th April 2007 at 12:23 pm

Brendan did you have laproscopy of regular surgery? How big was your incision?
Brendan

Thursday, 19th April 2007 at 12:28 pm

Laparoscopic - four incisions of about 1/2 inch to 3/4 inch each, I’d estimate (plus one in my arm for the PICC line).
Peggy

Thursday, 19th April 2007 at 3:26 pm

Aileen,

I know you can’t read this because today is the day! But if anyone is reading this for you I hope they will let you know that you are in our thoughts and in my prayers. Let us know as soon as you are able how you are doing and how the surgery went.
Keep a good thought, as this will all be behind you soon.
Peggy

Thursday, 19th April 2007 at 10:40 pm

Hi Sandra,

Wow, how coincidental that you posted on the same day as Kathy. Sounds like her hypoglycemia came about, or at least worsened after she had her gall bladder out! You must be farther away since I got your post long after I posted mine at 3:26. I guess you’ve seen that our replys go directly to your e-mail, even before they are posted here. I can’t remember who, but I think someone else on here commented on having worse hypos after surgery. I think it was…Homa? I don’t know if they removed her gall bladder or not. Check her earlier posts. She may not be on for a while, I remember she said that April was busy, and she’ll be having another surgery soon to look for insulinoma.

So, just curious, why did you have to have your gallbladder taken out? And how low does your sugar get?
It’s not very fun, I hope you can find some answers.
I’d like to know how to do a search engine as well.

Kathy,

I looked up those websites, pretty interesting stuff.
You know even if your sugar isn’t as low as others with this disease, it’s still low at 68 or 70! Enough to be feeling the effects. I remember the first time I went to emergency my sugar was only at 6o. ( that was 13 years ago) just talked to a diabetic nurse yesterday, and she explained that you have symptoms according to how far you’ve dropped rather than how low you go. I’ve often wondered how I could have symptoms at 50 that were more noticable than at 38.
You’ll know more when you get your GTT results back. They judge insulinoma on how high your insulin is compared to your low glucose level.

Lauren,

May 7th.. 18 more days!
Sandra

Friday, 20th April 2007 at 2:05 pm

Lauren
Thanks for all your help with all of this stuff I am just so upset I find what is happening to me and has been the symptoms of hypoglycemia are so bad it is so weird that the humbers are okay. I still did not get the copy of the GTT test in the mail tried calling the doctor for a copy and he is old fashion he was not in and believe it or not does not have a fax. I called up another doctor I know and begged him for a fasting insulin test and he said why would you want that if your sugar has been pretty good there is no reason for me to order it and would not why it is such a hastle. What concernes me that I dont hear anyone mention is that my small blood vessels seem to be attacking me with the colds hands and feet and I thought I read if this happens it could be insulin resistant I am so afraid I am stuck like this for life. I take vitamins and eat healthly I can’t image what else could do this I guess there are other reasons to get hypoglycemia but I am not too aware of them. I pray to god there is something out there to help this whatever it is. Can you have a normal sugar level and a high insulin level? If you had that happen do you know what that would mean? If so are there any drugs to treat this if my insulin level is high? Sorry Lauren I am so desperate at this time and doctors are tired of all this when they don’t know what it is they don’t want to be botherd. Any suggestions or ideas from anyone I would greatly appreciate.
God Bless Kathy
Amanda

Friday, 20th April 2007 at 4:04 pm

Hi All!

It has been awhile so I thought I would drop by and let you all know that recovery has been going great. I am a little over 5 weeks post-op now and could not have asked for an easier time. I had open surgery performed as the tumor was on the head of my pancreas and was in the hospital for about a week. I’m left with a scar that is about 8 inches long, but it is only a very thin red line at this point. I doubt that it will even show much once it is healed. Dr. Jeffrey Norton at Stanford Hospital is a genius and I highly recommend him and his team for any insulinoma needs!

I did have a drain in place, but it was removed before I left the hospital. That was actually the most painful part of the whole the process. As the drain was pulled out, my abdominal muscles were sent into some kind of intense, localized spasm. It was terrible! The pain from that actually lasted about a week. I was off pain killers after about two weeks (including hospital time) and experience very little residual pain. Every now and then I’ll feel some pins and needles, especially when I am trying to sleep. I am not doing any strenuous exercise yet, but I do try to go out on long walks and hikes as much as I can. I actually even went out dancing a few nights ago! I was training for a marathon before I found out about the insulinoma, so I am looking forward to getting back into that in late April.

What is amazing is that I feel completely different now. My energy level is through the roof, I can actually wait until I’m hungry to eat, and I just generally feel more productive. I am going back to work on Monday (my surgeon approved a 3-month recovery and I used about 1.5 months) and couldn’t be more excited. Work was starting to be such a struggle with the insulinoma and I think it is going to be a completely different situation now.

I just wanted to let everybody know that surgery does not have to be difficult. We all have different bodies, but for me it was all so easy and I hope that some of you have a similar experience. I completely feel for the people who are having more difficulties and wish that I could take some of that away from you. Stay strong and keep fighting through recovery. Once you get past surgery, we really are cured and life goes on in a completely different (and better!) way. Keep your sights set on that and I trust that you will get through it with no problems.

Take care and stay strong!
Amanda
Kathy

Friday, 20th April 2007 at 8:24 pm

All
You are truly a bunch of good people and what fighters each and every one of you are I watch your struggles and how you support one another and it is so nice to see in life that you are truly all lookin out for one another and building a beautiful site for people to coome to.ALSO A GREAT BIG THANK TO DR. JOH HE ALWAYS GIVES HIS SUPPORT IN ALL THIS AND ENCORAGEMENT.
GOD BLESS KATHY
Peggy

Friday, 20th April 2007 at 9:15 pm

Hi Amanda.

Thanks for that! I had been wondering how you were doing and I am SO encouraged to hear how well you are recovering.
I’m sure it has a lot to do with your young age, but also how fit you must be. You are an inspiration Amanda. Now I am even more determined to start trying to work out before my time comes

Stanford Hospital sounds like the place to go, if only I had better insurance. I’m still waiting to hear from UCLA to have another endoscopy scheduled. Hopefully this time they will be able to locate it.

How exciting for you to be returning to work! It’s good to hear how life gets better. Good luck with the marathon, and
keep dancing, for all of us! :)
Lauren

Friday, 20th April 2007 at 10:25 pm

Amanda, that is so wonderful hear.

Sandra, it sounds like you need to find better doctors/specialists. Have you considered going to the Mayo clinic in Rochester? They have like 43 endocrinologists there and supposedly specialize in insulinoma.
Angie

Sunday, 22nd April 2007 at 4:16 am

Sandra

Hypoglycemia is low blood sugar. If you do not have low blood sugar readings you do not have hypoglycemia!

Obviously you have something else with similar symptoms. The doctors should be treating you and trying to find out what you do have, however they will not do a fasting test without low blood sugar evidence as there would be no point. The fasting test measures the blood sugar levels dropping due to continuing production of insulin when the body should be regulating the levels and insulin production should be dropping off.

Something is obviously wrong so good luck pushing your doctors……

Angie
Kathy

Sunday, 22nd April 2007 at 7:32 pm

Angie & Peggy
I will look through my records and find it. Her lowest level that I remember was 34% which is extremely low. That is why I asked you to get a CT scan of the pancreas now because that level plus the persistence of her symptoms would suggest an insulinoma of the pancreas. Not a cancer but a small area producing too much insulin. It is sometimes very difficult to find, however.
Poor soul, she suffered so long with her diseased gallbladdrer and her pelvic symptoms. I am sure a local CT scan would be as good as anywhere.
God bless,

This is a letter that was emailed to me from my doctor does this sound like you guys or anyone out there my glucose levels seem more toward normal but I have all the hypoglycemia symptoms does this letter he sent mean anything to anyone reading it. Please respond thank you.
Kathy
Aileen

Tuesday, 24th April 2007 at 12:34 pm

Hey all…

Just wanted to let you know how things were going. I am 5 days post-op and am doing well. I had open surgery (which was no surprise, since the tumor was on the head of the pancreas) and ended up with a 1.5-2 inch scar. When I first saw it, I assumed that the surgeon had performed laparoscopic surgery, but it turned out he was extremely skillful in going straight for it (with the help of the ctscan). I was in the hospital for a total of 4 days, with two of them being in the intermediate intensive care unit. My sugar levels shot up 15 minutes after removal of the tumor, so they began administering external insulin so I wouldn’t turn into an instant diabetic (apparently the presence of the tumor causes the pancreatic islets that produce the insulin to become “lazy”). I was taken off the insulin after 12 hours since my pancreas adjusted quickly…I am still on the high range for glucose (@ 100), but the doctor said that should taper off eventually. I still have a ways to go, but I have already weaned myself off of Percocet (I take Advil instead when I feel some pain) and I am taking short walks at least once a day. I know our bodies are all different, but like Amanda, I just wanted to let people know that the surgery is extremely worth it, despite all of the pre-op anxiety. My surgeon also received the results of the pathology test on the tumor, and it was confirmed to be benign. Also, like Amanda, I can already feel the change in my energy level (although I need to constantly remind myself that I still need to rest). Another interesting thing is that I have started to have intense dreams again, which is crazy, since I stopped having memory of these as the hypoglycemic episodes became more frequent. For those of you who are preparing for surgery, have faith in your medical team, and just know that compared to what we have been dealing with on a day-to-day basis, the surgery is so worth it. And for those who are still searching for answers, persevere and keep yourselves on the doctors’ radar screens. I finally got fed up with being sent to the neurologist and the psychologist all the time, so I feel my stubbornness is one of the reasons I finally feel some relief now. I also found a really great endocrinologist, which is of course essential, as well.

Kathy,

I also have PCOS, and what I have learned is that although the association is rare between the two disorders, there is some logic associated with it: In addition to causing sugars to drop (since insulin regulates carbohydrate metabolism), an excess amount of insulin can also stimulate thecal cell production of androgens, perhaps leading to symptoms of PCOS. There still seems to be some mystery surrounding this issue.

Keep us posted on your progress!

Peggy,

Thanks for your kind thoughts…they mean a lot to me.

Amanda,

Congrats on your quick recovery…I was thinking about you, as well, and am glad to hear of your progress!
Kathy

Tuesday, 24th April 2007 at 5:24 pm

Peggy
Thanks for the information I am really sick with all this I can’t lift my head from the pillow the headaches are so bad and dizziness is crazy nothing seems to help I have severe insomnia and am constantly hungry whatever this is is crazy I feel like I am losing it I can’t seem to get answers. Thanks for posting me I am not sure I even post right I never see a message in my email box I check here everyday hoping someone will maybe identify with what I have. The doctor told me he never saw anyone’s level drop to 34 in all the years he has given people a glucose tolerance test which I found to be a little odd as I read here people’s drop low all the time. Tomorrow I pray I am going for a C Peptide test and a Fasting Insulin and Fasting glucose test and I will have to take it from there.
Kathy

Aileen
Glad to hear you are doing so well I am wondering if I will be where you are one day if one day all this nightmare is going to end for me and finally get diagnosed. Keep up all the good work and hope you are up and well real soon. God bless
Kathy
Kathy

Tuesday, 24th April 2007 at 7:44 pm

Peggy,
Just wanted to thank whoever started Dr. Norton’s site on here it is somewhere in the begining I wrote to him and his office callled me today they would like for me to come out and be evaluated I am very nervous because I don’t know this is what I am dealing with so I am going to go tomorrow for my fasting glucose and fasting insulin test, cpeptide test we will await those results then I will have to make the decision on what to do. He did alot of endocrinlogy has has a good background I also had a mircoadenoma back in 2005 had test repeated 2006 and test showed nothing I was told by many doctors that a microadenoma of the pitutary does not just disappear so I don’t know what to think. I also has Hashimotos disease I have nodules on my thyroid and the insulinomnia I am not sure I don’t seem to fit the pattern all of you have which bothers me. I have the Glucose Tolerance Test he could look at and I have the two pictures of the MRI’s of the pitutary with one in and one out. I have the two thyroid scans that were done also. I was wondering if I could pay him to look at that information and let me know if any of that is causing my problems also could be looking at perhaps MEN;s not sure this is all guess work I am not sure. I have all the symptoms of hypoglyemia but they don’t seem to leave me much at all and I don’t hear people on here saying that I seem to be in bed almost all day with these horrible headaches, blurry vision, dizziness every symptom is there but what else could be causing this to happen. For me to spend the money of course my life is worth any price but it seems like you people eat and get relief of the symptoms I don’t I have it almost all the time. Anyway just wanted to share and post and say hello to everyone and for the ones who are in surgery hope you are recooperating in my prayers for the ones who are home recoperating hope all of you are doing well and also enjoying your new life which you all so deserve maybe one day I will be like you guys not sure. Talk to you soon.
God Bless Kathy
Kathy

Wednesday, 25th April 2007 at 7:48 am

Peggy & Anyone who can interpret this test result
I have my 5 hour glucose tolerance test in front of me and what it states is
My fasting glucose number was 82
After I drank the solution they did one 1/2 hour reading that was 175, one hour reading was 134, two hour reading was 34 (Confirmed by repeat analysis) 3 hour glucose reading was 55 4 hour reading wa s 76 and five hour reading was 81 so what does this all mean I don’t know. I am curious if anyone who has this insulinmoa also has low blood pressure my blood pressure has been pretty low also running 90/52 which is very low for me not sure if the two go together or not. Thanks anyone and everyone for any help you can offer.
God Bless Kathy
Peggy

Wednesday, 25th April 2007 at 3:13 pm

Aileen,

You’re cured! Congratulations. :)
I can’t believe you have a scar less than 2 inches, how incredible. I want your doctor. That’s awesome you can just take ibuprofen. How was the pain when you first woke up? Did they give you something stronger than percocet to begin with? It’s great that you’re walking everyday, I hope you continue to recover quickly. Your news was very encouraging!

I finally have a date for another endoscopy…May 7th
Same day you go for your tests Lauren. Hopefully this time they will find it!
Peggy

Wednesday, 25th April 2007 at 7:39 pm

Kathy,

34 is unusually low glucose, which is why they would think it was an insulinoma. However, did they have to give you glucose or anything when it was that low, to bring you back up? If your body can do that on it’s own, I doubt it is insulinoma. Men-1 sounds like a posibility. Since you have the problem with the pituitary and pancreas..I thought MEN-1 was the parathyroid though, rather than the thyroid. Anyway, Men-1 would cause hyper not hypothyroid.
I know how it feels to have terrible headaches, I woke up this morning with a migrain. The last one lasted 2 1/2 days,
and I was very dizzy and week. That happens a lot to me, even when my sugar is o.k. I do have low blood pressure as well as cold hands and feet. That could all be due to low thyroid. (Hashimotos)

I know how hard this is for you, but you are so fortunate to be going to Stanford. I’m sure they will be happy to look at your films, as well as take their own. Put your trust in them, they know as much as there is to know about endocrine problems.
Soon they should have it all figured out for you.

Peggy
Lauren

Saturday, 28th April 2007 at 7:47 am

Aileen that is awesome! Especially after reading one guy have a 13 inch scar! and walking around in 5 days wow! Who was your doc and where did you go?
Lauren

Saturday, 28th April 2007 at 10:08 am

Aileen and Amanda, how have your eating habits gone since surgery? Are you able to stomach any food yet Aileen? Amanda how long before you were eating again? Have you lost much weight?
Aileen

Monday, 30th April 2007 at 2:01 pm

Peggy,

Thanks…it is pretty wonderful to be on the road to recovery. My husband and I measured the length of the scar, and it is closer to 2 inches. Initially, the pain was quite intense, and the doctors put me on morphine for the first three days (self-administered). Even so, it makes me cringe to think of the first time I got out of bed to use the bathroom…the pain was awful! Now, I am not even using advil, but to be honest, I think it helps that the incision is so small. I am sure that if it was larger, my abdominal muscles would be taking much longer to heal.

Best of luck with the endoscopy…let us know how it goes!

Lauren,

I definitely have to give the credit to my surgeon…his name is William Cance, and he is the chief of surgery at Shands Hospital at the University of Florida. He has quite a bit of experience with this type of surgery, and I suspect that since he works out of a research hospital, folks with insulinoma are referred to him from much of the Southeast.

And yes, my eating habits have changed! I am only eating three meals a day…no snacking. The doctors put me on solid food two days after surgery, so I only experienced a 5-7 lb. weight loss from the hospital stay. I suspect that since my dietary and exercise habits have changed, that this trend will continue (at least I hope so!).
Lauren

Wednesday, 2nd May 2007 at 2:21 pm

Has anybody besides Homa gone through extensive screening and not found their insulinoma? I am going for testing Mon and I’m terrified of this!
Peggy

Wednesday, 2nd May 2007 at 4:55 pm

Hi Lauren,

I know how you feel. You know what is scarrier than having tests done, is having reactions to low blood sugar! This weekend I took a ride to the E.R. in an ambulance because my husband couldn’t wake me up again. It’s definitely worse than it use to be, my sugar was 26 this time. But the bill was the real scary part. I’ve had multiple MRI’s and CT’s, 3- 72 hr fasts, an angiogram and an endoscopy. You don’t have to be afraid of the tests they’ll do, they’re painless. As I remember, you’ve already had some blood work and an MRI. I hear the high resolution CT’s are of greater value for this. It seems with all their expertise now, they wouldn’t go in without finding something first. I know there’s still that possibility that it could be more than one simple tumor, but I try not to think about that. Really, Homa was the exception out of all the people who have been posting on here. At least they know what they’re doing at Mayo, and they have all the right equipment there.
Chances are pretty good that they will find it for you.
If I can just hang on ’till Mon. maybe they’ll find mine too!
Bev

Thursday, 3rd May 2007 at 7:36 am

Hi everyone,

I’m in the U.k and came across you all while searching for info insulinomas.

Well to cut a story short I’ve recently been having hypo’s and over the past 2 weeks around 4 - 5 a day. I’m 38yr old female of good health.
Reading your mail I to have an extreme craving for sweetness and have the most vile mood swings if I dont eat when I need to. But to top it my symptoms:
blurred vision, weakness dizzyness, edge of passing out, confusion, tiredness, crying, panic. Low blood sugars of 3mmols @ which point I’m freaking out.

I have been to my Genral Practitioners twice and to A&E accident and emergency twice and I feel as if they think I am making it up as when I get there I am on the recovering pathway due to my glucose intake. However I get terrible pulpitations as if my heart is coming out of my chest when I am coming up and I go as white as a sheet. Aswell as feel a little nauseaus then it settles down depending on how much glucose I have taken. I hate it, it upsets me so much.

However my G.P. has now descided to refer me to an endocrinologist at a privete hospital so I can hopefully atleast be diagnosed. He believes its an insulinoma or that is how he is treating it. I will inform you of the plans but my G.P seems to think I will also become an inpatient for the 72hour test. This totally terifies me. I can not bare the thought of loosing control to the hypo.

Anyway good luck to you all and I will keep an eye out on the e-mails.

Bev
Lauren

Thursday, 3rd May 2007 at 8:39 am

Thanks Peggy, I’m actually going to MDAnderson in Houston cause its so much closer for me. If they don’t find anything or I’m not comfortable with their surgeons I will definitely be on my way to Mayo. I lose track, did your tests actually find an insulinoma? If so, which test found it?
Peggy

Thursday, 3rd May 2007 at 4:06 pm

I’m sorry Lauren, I remember now you said you’re going to Houston. I would be doing the same thing in your place.
You’re just going for tests right? And you will be going back for surgery, hopefully? They haven’t found anything yet on me. Only the 72 hr. tests confirmed insulinoma. I go for another endoscopy on the 7th. Only three more days, are you geting anxious?

Does anyone else with low sugars have migraines??
Lauren

Thursday, 3rd May 2007 at 5:57 pm

Welcome aboard Bev. I know the 72 hour test seems scary but its basically the standard procedure for somebody in our situation. I would have somebody go with you if I was you, somebody that understands what happens when you go low and possbly take a glucose monitor with you so you can tell how fast you’re falling. I know mine come on very suddenly. All of sudden my brain shuts down. Good luck.

Peggy - wow! I didn’t realize you had so many tests to no avail! That is my fear! Who has been doing your testing? Is it somebody who is experienced with insulinoma?
Peggy

Thursday, 3rd May 2007 at 7:27 pm

Lauren,

I had a good endocrinologist at first, who diagnosed me right away, but I guess he was too good for my insurance. So, since then I’ve just been having tests. I’ve been told by a certain hospital that there equipment/ technicians are better than others. I guess I haven’t had the right people doing mine. Really, you have to be your own advocate. Experience with insulinoma can vary so much. I think it’s my insurance that’s been holding me back from being treated.
The endo. that did my second 72 hr fast recommended that I go to Mayo or Stanford. My insurance settled for UCLA. I wish I had persude the other hospitals because I believe they would’ve taken care of it long before now. Just be sure, if on the small chance that they do not find what their looking for in Houston, that you don’t go home! Make them do every test they know of. I know the calcium infusion test isn’t done that often, but if that’s all that’s left, do it! Sorry to sound so extreme, but you know how it is to live with this for so long. The good news is you’ve had the least tests so far, they’ll probably find
it on your first CT. :)
Peggy

Thursday, 3rd May 2007 at 8:09 pm

Hi Bev,

After living through a few surgerys,a scary childbirth, deaths in the family and even raising a couple of teens, THIS is definitely the scarriest thing I’ve ever been through. Loosing control to the hypos is hardly even relatable. At least you’re not alone, though it sure feels like it. I spent a day in the emergency room this weekend, I don’t think they really know what you’re experiencing either. The good news is there are people who do now. Two people on here were treated in the UK, successfully. Angie and Helen.
Great advice from Lauren, take someone with you that can tell when you get low. I had a freind call me when I was in the hospital, and he could tell I was out of it and had to call the front desk to send someone in to take care of me!
Though they want you to have some symptoms, they don’t have to keep you down long. If you have someone with you who
knows when you’re getting low, and your own sugar monitor,
you should be fine. Nothing like when you get low on your own.
I hope your diagnosis and treatment go quickly!
Peggy
Lauren

Friday, 4th May 2007 at 8:32 am

Peggy, so UCLA has been running all your scans? I would think they would know what they are doing. I hope I am not making a mistake by not going to Mayo right away and saving the time. But actually my doctors sent referrals and my records to Mayo over a month ago and I was told that a Dr. Service was reviewing my records. I have not heard a word from them since. I find this strange. I know Homa said she was supposed to be seeing the same doctor.
Homa-if you’re out there, has Mayo been responsive to you?
Aileen

Friday, 4th May 2007 at 9:29 am

Bev,

I would concur with Peggy and Laurens’ advice…I brought my husband with me, and it was absolutely comforting to have a loved one close by in an uncomfortable situation. From what I can tell from others who have written about their 72-hour fasting tests, many were able to get to an acceptably low level before 12 hours were up. Hopefully, you won’t be stuck in the clinic for much longer than that. In my case, my endocrinologist was uncomfortable taking me any lower than 35 mg/dL (even though I had previously registered at 20 in her office). She monitored my heart rate (looking for rapid pulse), my temperature (looking for a drop), my skin (clamminess), and asked me math questions (trying to ascertain whether or not my cognitive skills were still functioning). Once all of these factors broke down (and once I reached 35), she stopped the test. I think she didn’t want to send me into a seizure-type episode, but I guess she also needed to draw blood at the appropriate time (when a low blood glucose level was going to represent an exceptionally high insulin level).

I am sure your clinic will try and make you as comfortable as possible, and will not let you fall to dangerously-low levels…it is not ideal to have to go through this, but it is the first step in getting your insulinoma diagnosed…good luck and keep us updated!
Bev

Friday, 4th May 2007 at 1:55 pm

Thank you,
Aileen, Peggy and Lauren for your kind advice.

I am off to London tomorrow to see Mr Lynn who is top dog for Endocrinology in the U.K. So hopefully I will have news and plans for the 72 hr test etc.

I,m off work at the moment as I’m a nurse on a general elective and acute surgical ward. Not the best place to be blacking out.

Anyway will let you know what happens.

Good Luck
Angie

Saturday, 5th May 2007 at 2:36 am

Bev

Do not bother going private !!!

Get your doctor to refer you to Barts and the London, Dr Drake.
Not knowing where you are may make this difficult but they really know exactly what they are doing. Im near so it was easy for me.

My insulinoma was suspected by my doctor in june, I had a 72hr fast in july, various scans in august and a calcium infusion test in september, an endoscopy in november and my operation was in february. I could not really have had better care and the surgeon was the top man.

Any help or questions let me know!

Angie
Angie

Saturday, 5th May 2007 at 2:51 am

Bev

Ive just read your post again as I replied before reading all the other replies.

To put your mind at rest they monitor you constantly and the nurses are trained specifically for these tests - but you need to go somewhere where they are! They probably will not allow anyone to stay with you - in the US I think you get more freedom but here is a little different, I dont know how they do it privately.

They have to get two readings below 2, mine were 1.9 and 1.7, as soon as you hit that they pump you full of toast and sweet tea!!! If at any time you feel you are having a low you call they test with the monitor and take blood to send away. It took 30 hours for me to get my two results and I went in with a count of 2.9 - I had been 2.2 all weekend before I went in!

Hope this helps - there is no need to be terrified, but try to go to St Barts, that is my best advice. Myself and Helen were treated there.

Angie
Bev

Saturday, 5th May 2007 at 12:40 pm

Angie cheers for advice,

I live in Brighton I went to see Mr John Lynn (endocrinologist) today at the Cromwell in London. He seemed pretty convinced. I have my test on Sun to Weds. Part of me feels like a fraud as when I am well I can cope and think I imagined the whole thing.

Your blood levels are they blood sugar finger prick levels or intrevenous from your vein?

Well I hope this hospital is as knowledgeable as they sounded at St Barts. Well I have faith in them.
Angie did you have it done laparoscopically or a laparotomy?

And

When you ate pre surgery after going low did you feel just as odd going high?

And

Did you just eat when you thought you were going low and at what point did you know this was happening?

Soz for all the questions but your all the nearest thying I have to understanding.

Cheers angie.
Helen

Sunday, 6th May 2007 at 2:50 am

Hi all,

Well done Amanda & Aileen on getting through your op and am so very pleased it is going well for you and is has been successful and that is a tribute to your surgeons. Yes it is amazing after surgery how different we feel and for me that is when you realise how sick you actually were before the op.

Wow Aileen, 2 inches that is great, mine is 8 inches (which is the norm). Yes the thin red line eventually fades to a very fine white line but then I am not someone that shows off my tummy or wears a bikini so it does not bother me so much.

I can say that although we feel normal again you do need to take it easy, listen to your body, when you feeling tired then just sit back. I was in hospital for 2 weeks, then off work for about 4 months. They say about 2 months recovery before going back to work, but I was mentally struggling with the op and a few other things so was not ready to go back.

Still a year on I sometimes feel really exhausted, I don’t think I’m as strong as I used to be but am healthy & well. I sometimes am a bit sensitive around the scarring, e.g. when I sneeze or when I do some tummy exercises, it is not painful though.

Amanda, hope you are enjoying being back at work and I must say you were brave to go out dancing so soon. I did get out and about and go for walks but did not attempt the dancing until much later.

Hi Bev,

As Angie says you definitely need to get in touch with Dr Drake at Barts or get your GP to refer you, he is one of the top endocrine specialists there. Our surgeon, Mr Bhattacharya and Dr Drake are a wonderful team and you could not ask to be in better hands.

I know this is a scary journey but you will get through it and being with the endocrine department means you can trust that you are in the right place for the 72 hour test as I initially was in a general ward at a local hospital and that is scary to be with nurses that are more frightened than you! I spent a week in this ward and the nurses are lovely and worked hard but they did not understand or know of insulinoma or how the 72 hour test should work therefore kept feeding me to make sure I did not have a hypo. Once I was transferred to Dr Drake’s team in London I felt the difference and relaxed a bit and had more faith in them.

An article for you to have a look at
http://www.bartsandthelondon.org.uk/formedia/press/release.asp?id=1337

If you would like to email me at the address in t he 3rd response as above then please do, I am happy to help out and meet up like Angie and I have done prior to her op – that’s if it’s doable.

I don’t sign on often at home so sometimes am slow at responding.

Best wishes to all.
Helen
Lauren

Sunday, 6th May 2007 at 11:31 am

Those of you have done the 72 hour test, how long was it after they drew blood that you got results? I know getting an insulin reading is a lot harder than a blood sugar reading.
Angie

Monday, 7th May 2007 at 3:04 am

JON
We are missing 3 posts!
Angie

Monday, 7th May 2007 at 3:37 am

Bev

Ill reply to your post that came through to me but isnt here!!!
If you need to contact me, Im on angieanco@talktalk.net.

Just to say this to you and anyone else reading this, any questions you have, you must ask! When I first found this site I was heading for surgery and could find very little info on this condition - everything was about ferrets and dogs!

Helen replied to me and when I found out she was “up the road” I was so relieved I cried! She will tell you that she found very little help or info when she was going through it and she helped me so much! We are very good friends now!

Anything that we can help you with we will. We felt that we wanted to start something that could offer info and help but this seems to be doing that with all the input anyway!

Are you doing your test on the 13th May or are you doing it now?

Blood levels are from the finger prick test but during the test they take intravenous blood to test, as that takes a few hours they test with the finger prick test to keep a close watch.

You may find you end up with our surgeon anyway as Im sure he does private work too!

I could not have keyhole because of the tumour being where it was in the head of the pancreas next to a duct. I have a 9 inch scar across , 2 inches above my belly button. Helen’s is smaller - we have compared - LOL!

I dont really understand your question about eating. When I ate I felt normal, I only felt weird when having a low. My body was so used to being so low for so many years without knowing anything was wrong. I never blacked out although I did have the odd bout of confusion - my husband says that was normal ha ha! - and I lost time one day, I was feeling bad and things were really strange. I know what you mean about feeling a fraud as when I was in hospital having the 72 hr test they were all really concerned and I was wondering what the fuss was about - I know now!!

When I had a low I would go shaky, have extreme sweats, loose my ability to talk slightly and I d get a fizzy tongue. I would not always get the same symptoms. My worst reading was 1.7 at work one day and I just felt faint. I tested my blood for about a month while waiting to go to Barts. It was very interesting.

I always kept a cereal bar with me in case I had a low. I was still trying to battle my weight and was going to Slimming World all through this to maintain. It did become an excuse to have a bit of this and that when I was feeling low but if I hadnt have been doing that my weight would have rocketed. I put on 10lbs over the last two years for no real reason which was also another reason I felt something was wrong.

I was so tired all the time and getting a bit depressed. I hurt my back and went to my doctors and while there asked for a blood test. It all went from there - very quickly I must say!

They reckon with my history I had had this for 10 years but it had started to get to a size where it was effecting me more and more.

Let me know when exactly you are going in.

Im back at the London next week as I have to have a scan - I may have a build up of fluid and they are going to check it out! If you are there I could pop in!!

Its 3 months yesterday since my op and the change is incredible!

Hope this helps you keep us informed.

Regards
Angie

PS Lauren - it took a couple of hours to get the blood sugar readings back but a few days/week for the c-peptide and insulin levels.
Peggy

Tuesday, 8th May 2007 at 3:46 pm

I had an endoscopy yesterday, but they didn’t find anything on my pancreas. :(
They found that the lymph nodes around the pancreas were swollen, whatever that means, so they took a biopsy.

Bev,

Are you having those tests done now? Are you finding answers to your questions? I don’t really have any symptoms anymore, until I check out mentally. I eat or drink rice milk whenever my sugar gets in the lower 50’s.
Which is all the time. I only feel strange coming up when I’ve been extremely low, I figured this was just before my brain has gotten the sugar. Speaking of which, I could use right now.
Bev

Thursday, 10th May 2007 at 1:38 pm

Hi Peggy,
I’m going for my test on Sunday. I’m hoping I can take my laptop and be able to use it there so I don.t die of boredem……lol.
Does anyone know if having a PICC line standard for this procedure or does it depend on the hospitals local policy?
Brendan

Thursday, 10th May 2007 at 1:50 pm

Bev,

Based on the other experiences described here, I believe the PICC line is more special case than standard. My endocrinologist felt strongly that I needed one because my levels were dropping so rapidly at that point, and that it would keep me stable while we consulted with potential surgeons. All told, I had it for about a month. It did make it very easy to do most normal things (like, y’know, drive, or take plane flights, or stop eating every thirty minutes). If the time between your diagnosis and your surgery is short, it’s probably not worth it. I had to deal with a home care nurse each week (she would change the dressing), constant shipments of glucose and batteries for the pump, and the increased difficulty of showering while wrapping one arm in saran wrap to keep it dry.

It doesn’t rank as one of my Top Life Experiences…

Brendan
Jane

Thursday, 10th May 2007 at 4:44 pm

Am having surgery on Monday for an insulinoma and am very nervous of what will actually happen. Looked on the web and found this site. Couldn’t stop reading all the info, good and bad. I’m in Birmingham, England.
Jane
Peggy

Thursday, 10th May 2007 at 11:27 pm

Hi Jane,

I wish I was you! I assume they know just where your tumor is. Monday will come quickly, naturally you are nervous, I would be as well, but it is a little exciting is it not? Have you had the condition a long time? I think I hold the record at 15 years. Out of around 15 of us I think 10 have had surgery. 6 did really well, Suzie had a harder time, but is doing pretty well now too. Only 2 or 3 were more complicated. That’s pretty good odds.

(ST, I would really like to know how your wife is doing.)

Hopefully you have good support to go through this with you, but if you need anything from us, we’re here for you! Let us know what you are going through.
Peggy
Bev

Friday, 11th May 2007 at 4:54 am

Hi Jane,
I’m in Brighton south coast of England. I go in for my 72 hr fast on sunday evening. How long have you been between 72hr fast and surgery ?
Angie has had the surgery in the U.K. and is great for information.

I wish you luck Monday and hope to hear off you post-operatively.

Goog Luck Bev
Lauren

Friday, 11th May 2007 at 11:45 am

Bev - how did you fasting test go?

72 hour test question - I had mine on Monday morning. I ate something at 3 in the morning and by the time I got to the observation room my sugar was 39. They said they wanted to get another reading before stopping the test. Then it started going up! Has this happened to anybody? It never went over 50 but lingered between 45-50 for hours!! I’m wondering if it was because I was just lying still in a chair and not moving at all and I know your body will kick in reserves to compensate. So anyway 12 hours into the test it plummeted pretty quick. I got to 33 and they stopped it. So does this mean I possibly don’t have insulinoma because they didn’t drop consistantly? Did this happen to anybody else? The waitning for results is killing me!
Lauren

Friday, 11th May 2007 at 11:49 am

Also I insisted the do a CT spiral scan, hao many of you found yours with this?
Homa

Friday, 11th May 2007 at 2:31 pm

Hi Lauren
I am glad to hear that you got your test done. I have never heard of blood sugar going up, but with insulinoma you never know. I wanted to ask you if you went to Mayo clinoc or not. I am trying to set up a time to go up there, I have to get my medical record from Duke before I could go though
Hope you get the result of your test son.

best of luck with your surgery Jane. I hope it all goes well.
Lauren

Friday, 11th May 2007 at 3:50 pm

THEY FOUND IT! THEY FOUND IT! My doctor just called me! I am the world’s happiest woman - to have found a tumor- Who’d have thought? Its 1.4 cm and it is in the head. They found it with the CT Spiral scan. Homa, I went to MD Anderson in Houston. They are more knowledgable than I expected and supposedly the surgeon they are assigning me to has done insulinoma surgeries before. I’m not sure how many but since they know the exact location I’m not as worried. His names is Evans. i’m going to celebrate now!!
Jane

Friday, 11th May 2007 at 4:02 pm

Dear Bev,
I had the fast in November. lasted far less than a day as the nurses were very worried about leaving me with such low blood sugar levels. Of course they had never heard of the test(neither had the doc on duty!)

I won’t go into details but because I saw so manyifferent people at clinics there was a lot of confusion about where things went next until I met one doctor who said they couldn’t deal with me there and referred me to a teaching hospital. It is here where I’m having the op on Monday. Had the MRI CT and EUS tests after the fasting test fairly quickly though.

Am looking forward to feeling better for the summer. Or is that wishful thinking?
Good to read about all your experiences.
Wish I’d found the site before.
Jane
Peggy

Saturday, 12th May 2007 at 1:00 am

I know I already sent this post but…

Yay Lauren!!

I’m so glad they found your tumor! I was hoping they’d find it on your first CT. Good thing you insisted they do it.
Your life is going to be so much different. :)

Bev,

Which test showed your tumor?
Peggy

Saturday, 12th May 2007 at 9:50 am

Sorry Bev,

I know you’re going for your test tomorrow. I meant to ask,

Jane,

which test showed your tumor?
Lauren

Saturday, 12th May 2007 at 11:25 am

Sorry Bev, I meant to ask Jane which test showed her tumor.
How did your fast go? I hope it was easir than mine was. After five hours the protocol was that I go from the clinic and a nurse that knew what she was doing to the hospital and a group of nurses that had no idea. It took them over an hour to check my sugar and get their act together.
Jane

Saturday, 12th May 2007 at 2:07 pm

Hello there Peggy,

I was first diagnosed within 48hours at my local hospital after being admitted unconscious.
They could tell because of the biochemical tests but the (new) consultant said I couldn’t have insulinoma because it was too rare!! Sent me to a see a neurologist………………..another story!
Months later I was sent back to the endocrinologists who sent me for an MRI scan which they felt showed a suspicion of a tumour. They put me on diozoxide whcih is unpleasant but better than constantly eating. Then they sent me for a CT which showed nothing to the people at my local hospital. At the teaching hospital they had a CD of the tests and said they could see 2 tumours!! YIKES! Finally had the EUS after which the doc said he could see only one in the head of the pancreas which was very near the bile duct.
Only hope now that there is a bed for me tomorrow.

Dear Bev,
Hope the test works for you!

Jane
ST

Sunday, 13th May 2007 at 6:49 am

Peggy,

My wife and I returned home about 3 weeks ago. She still has the drain connected. She is eating well, looking healthy with no infections and has been stable. The doctors hope that once the drain tapers off, there is a chance that she may even not require further surgery. The doctors/surgeons have been saying it will taper off for a month but the drain is not tapering off as it has held steady between 40-50 ml/day. They want to wait it out for a few more weeks before a decision can be made. Her mobility is greatly resricted and on some days she is a bit down as teh drain quantity is not going down at all. I am providing her encouragement and also we have been having a constant stream of friends/relations providing support/encouragement. Hoping and praying she recovers/heals well and avoids surgery. As some of the scenarios (if it does not heal) are not very pleasant, I have discussed with some of the surgeons in US who deal with those surgeries/transplants (can be very expensive too). I am not so sure when this ordeal will end for us.

As I returned to work after 3 months and given that I am a senior person in my company, I am literally drowned in my work. I did not have much time to browse this thread and also trying to balance my time with work/wife/kids.
Lauren

Tuesday, 15th May 2007 at 10:12 am

Hello all! My surgery has been scheduled for June 7 at MD Anderson in Houston, TX. I am excited beyond words that in three weeks I will no longer be a slave to food. I will be able to skip a meal! Hooray!!
Leila

Wednesday, 16th May 2007 at 5:05 pm

Hello! I hope some of you have thoroughly researched insulinoma diagnosis and treatment and have come to some conclusions as the to places to go for the best care. I have an 8 year old nephew who has all the symptoms of an insulinoma. Insulinoma is extremely rare in a child this age. He is in a children’s hospital in Atlanta. After the standard tests, it appeared to be in the vicinity of the hepatic vein, but after laparascopic surgery, the symptoms persist and are even a bit worse…a higher level of glucose has been needed. The doctors are questioning the diagnosis now. I am feeling very insecure with the professionals who are working with him, though I know they are doing their best. Can you recommend anything for us?
Please help. His mom is willing to travel with him.
Lauren

Thursday, 17th May 2007 at 3:12 pm

Leila, did they actually remove a tumor? I was a little confused by your post. Of all of the research I have done on this topic I know one thing: It is vital that you go to endo’s who are specifically experienced with insulinomas which is hard to do because they are so rare. I have been extremely happy with my team at MDAnderson in Houston. My endo there answers my e-mails within an hour and the surgeon she is referring me to is specifically a pancreatic surgeon and they have done insulinoma surgeries. I would question the team and ask them how many insulinomas have they diagosed and removed. He may have another tumor that they missed.
Leila

Thursday, 17th May 2007 at 5:13 pm

No tumor was removed as far as I know. We still have no results from the lab, and it has been almost a week. Since insulinomas are so rare in a child this age, they are suspecting that it may be something else. Perhaps beta cell neoplasia. I do want them to see someone more experienced. This doctor has done 4 surgeries for insulinoma.
Thank you for your input, Lauren.
Peggy

Friday, 18th May 2007 at 3:31 pm

ST,

I’m happy to hear your wife returned home and is doing well. I also am hoping and praying that she will heal well and avoid further surgery.
It must be hard for you, trying to balance your responsibilities, but it sounds like your priorities are in order. I’m sure your wife will pull through with such great support. Let her know we are pulling for her as well. It’s hard to understand why we have to go through such hard times. But.. that which does not kill us makes us stronger.

Keep the faith
Lauren

Tuesday, 22nd May 2007 at 9:17 am

Question: can anyone tell me the difference between pro-insulin and insulin levels?

I have a distinct tumor on the head of my pancreas however my insulin levels were not high they were “supressed” whatever that means. They averaged 5-6 I believe however my proinsulin levels were high(20. I am still scheduled for surgery however I’m a little worried that my actual insulin levels were not that high?
Linda

Wednesday, 23rd May 2007 at 8:56 pm

Hi everyone, I just found this site tonight I was just diagnosised with an insulinoma a couple of weeks ago and I’m going to see a specialist on June 18th. It’s been great reading the conversation on the site. I had tyroid cancer 2 years ago and I was attributing alot of my syptoms to a high thyroid level. Well, thinks kept getting worse and than the uncontrolled anger and the feeling that I was always looking through a cloud. I had a few episodes where I thought I was going to pass out than I’d wake up a night needed to eat. I knew something really wasn’t right. I get hand tremors and was concerned I might have MS because I have a brother that has MS. So I’m going to read more of what you all have to say and try to educate myself before I face surgery. My proinsulin level was 71. I’m hoping if I do face surgery it will be laproscopic.
Peggy

Wednesday, 23rd May 2007 at 9:41 pm

Leila,

Have you found out anything else about your nephew? He is so young to have to be going through this. I think given the choice, that I would be at the Mayo Clinic. What exactly did they do in surgery?

Lauren,
June 7th is right around the corner! I’m sure I don’t know anymore about insulin and proinsulin than you do, but if your insulin levels were supressed than does that mean that your tumor is non-functional? Not likely since your sugars are so low. I remember a doctor telling me that the tumors give out insulin in bursts, maybe…i don’t have a clue.
Did they do any other tests like the calcium stimulation to find out where the insulin is coming from? I guess they’ll know more when they take the tumor. I can imagine how uncomfortable you are with that. At least doing something is better than doing nothing. Just be sure you demand the best treatment Lauren. Speak up or have your husband. Please let me know if you find out anything else before you go in.
I’ll keep you in prayer
Lauren

Thursday, 24th May 2007 at 7:58 am

Thanks Peggy, I since found out that proinsulin is the precrusor to insulin (it turns into insulin) so if that was high then eventually my insulin would be high so everything is a go for my surgery. What about you? What is your current situation?
Peggy

Friday, 25th May 2007 at 2:56 pm

I wish I had something to tell you Lauren,
I do see another endocrinologist from USC on the 4th. I guess we’ll just go from there. In the meantime, I had to have the paramedics come out again last Saturday. Someday this will end, right?
Peggy

Tuesday, 29th May 2007 at 1:40 am

Hi Linda,

Have they actually found your insulinoma? Or have they only done the blood work so far? Your proinsulin sounds pretty high. I hope you have a good specialist. Keep in touch.

Peggy
Laura

Monday, 4th June 2007 at 1:26 pm

Hello All!

What a great idea this is! I have been looking all over the internet and this is by far the best information I have come accross. I had an unltrasound last Friday and finally got my official diagnosis of a tumor. I am meeting with a surgeon at the University of Chicago this Friday. Unfortunately, my tumor is located on the head of the pancreas so I doubt the surgery will be laproscopic, but at this point I will take any type of surgery that will give me my life back!

The thing I think is most “funny” about this disease is you tell people you are hypoglycemic and they always give you that yeah sure or whatever look. Even when I went in for my ultrasound on Friday, I had to fast before so of couse I was low. When I got to the hospital my meter said I was 43. They give me all this paperwork to sign and my husband kept telling them, her blood sugar is low, can we start an IV and then do this and they kept saying it was not a problem. Finally when they did check, I was 35 and they all freaked out. It’s like they assume you are lying or you don’t know what you are talking about. Has anyone else experienced that?
Laura

Monday, 4th June 2007 at 4:04 pm

Lauren- by the way, when my blood sugar is low, my insulin levels are also low which I guess is abnormal if you have a tumor. Even when they did my ultrasound, they were ruling out a tumor more than expecting to find one.
Aileen

Monday, 4th June 2007 at 4:15 pm

Laura,
I did experience some doubt at the beginning when I told my GP that I thought I
Aileen

Monday, 4th June 2007 at 4:25 pm

Ooops! Sent the message before I was ready…what I was going to say was that my GP initially doubted that my hypoglycemia was serious. I got the “well, you’re thin, so experiencing low blood sugar can be normal” talk. It wasn’t something that was jumped on right away. It took several months after that conversation before I insisted on a glucose test and came in at 35 mg/dL..after that, I was sent to a great endocrinologist who took the potential for insulinoma quite seriously. From what I understand, though, there are a few other disorders that can cause low blood sugar (for example, I was surprised to learn that diabetics can also experience lows) so you would think medical staff would respond with more immediate urgency…it just pays to be insistent, I guess. Good luck!!

And, Lauren, I remember that you are having your surgery this week, no?? I’ll be thinking about you and wish you the best of luck! I know you’ll do great!
Peggy

Monday, 4th June 2007 at 8:18 pm

Hi Laura,

Welcome to the club, I get that all the time. At least now there are a lot more professionals that understand than there use to be. Still, when I am asked to fast for some tests like blood work, I just say, yeah sure o.k! What’s funny, is when you try to explain your condition to someone you know and they say, “Oh yeah, I’m hypoglycemic too.”

So how long have you had to live with this before you were diagnosed? I’m not sure I know anyone else who has been diagnosed through an ultrasound… Maybe your tumor was big enough to find that way? I’ve had numerous MRI’s CT’s and endoscopy’s, to no avail. Maybe I’ll ask for a US.

Hopefully your surgery will happen soon. I’m glad you found us.

Lauren,

The endo I saw today said that my proinsulin was 94 when my glucose was at 32. That wasn’t the 72hr fast though, if that makes any difference. Other than that she just upped my proglycem to 200 mg 3 times a day. I can’t wait to see what my eyes look like in the morning now!

One more day!! Hang in there.

Aileen,

How are you feeling? Are you back to doing all the things you use to?
Linda

Monday, 4th June 2007 at 8:44 pm

Hi Peggy, I’ve only had the blood work done. I get very symptomatic with a blood sugar of 70 if it goes lower than that it’s I really get bad. I’m going to the Cleveland Clinic this month to see a specialist. I’ll let you know what happens. Thanks for responding. It’s nice to know others are going through the same thing. People that don’t have hypoglycemia as you know just think they know what you’re talking about but have never really experienced it. I’ve really been interested in how people have handled surgery. I’ll be in touch.
Homa

Tuesday, 5th June 2007 at 3:33 pm

Lauren
I wanted to wish you luck with your upcoming surgery. I also wanted to thank you for mentioning how they found your tumor. I had done regular CT at lwast three times and they did not find it. My endo is trying to find out if we could do spiral CT here. From what I have red, it is good in finding small tomors and it pinpoints them. I am hoping that if I can get that done, and they can find the tumor, I won’t have to go to Mayo clinic. I do not want to travel that far, I am sure you know how that is
I will keep you in my prayers. Good luck and keep us posted.

Aileen
How are you feeling? has the recoperation been hard?

Anie
Have not heard from you in a while. I hope you are feeling better and back to the way things used to be before insulinoma
Homa
Laura

Tuesday, 5th June 2007 at 8:24 pm

Peggy,
They did an MRI on me first that showed nothing. My blood work was inconclusive because even when my blood sugar was at 27, my insulin levels were low between 5-8 which is on the low side of the range. Being that they were running out of options, they did the ultrasound as a “rule out” and it showed up. My tumor is not big only 1cm x 1cm I believe, so it does work even if they are small. It is not a pleasant procedure, but worth it to get the diagnosis. You get knocked out and you get a tube down your throat. My doctor wanted me to have a glucose drip, but instead, they got my sugar way up before the procedure and checked me as soon as it was done so I was fine. I just read up above that you had an endoscopy, they called this an endoscopic ultracound so maybe it is the same thing?

As for how long I have had this, it is very strange. I had symptoms when I was nursing my second child which was 2005, then they stopped when I stopped nursing but I did get pregnant right away again. I had no symptoms while I was pregnant, but as soon as I started nursing my third child they came back, but this time they did not go away. My doctors think I have had this for a long time because I have hypoglycemic unawarenss which means I am not aware that I am low until it is too late. The first time I was at my doctor, she had me fast for the blood work (Again probably did not believe me, who knows?) So I had this whole appt with her, I was fine, I left her office went to starbucks and drove to work. I never felt my sugar go back up after eating at starbucks, I felt totally fine. The next day she called me to say that my sugar was 27! Can you imagine walking around and driving at 27 and being fine? It is crazy.
Laura

Tuesday, 5th June 2007 at 8:27 pm

Peggy-
One other thing to consider, a procedure like that is only as good as the techincian or doctor that does the procedure. I have a friend who was recently diagnosed with cancer. His original doctor told him they did not know what it is, but they know it is not cancer. His new doctor told him the scans he had done with the first doctor were useless because they were so blurry, he could not read them. He had the scan done again by the second doctor and got his diagnosis immediately. Just something to keep in mind, this is so rare, was your technician’s specialty this type of thing?
Angie

Wednesday, 6th June 2007 at 8:29 am

HI Homa

Im still here reading all the posts as they come in….

Ive been away for a week so had a few to catch up on!

The last time I wrote I was off for a scan to find out if there was anything wrong after my surgery - the good news was that they found nothing! the bad news they dismissed the pains I was having and sent me away! I had a few more pains so went back to my doctor who gave me antacid tablets and so far I have been ok!! I was annoyed with the hospital as my blood test done by the doctor indicated I had and infection but the hospital did not take any further tests ans I havent heard from them at all. Im due to see my medical consultant at the end of the month so Ill have a moan to him!!

Just a warning to everyone after surgery - dont catch a cold and cough! Ive got a stinking cold - sneezing and deep coughing is sooooo painful! Im walking around holding my stomach feeling like Im going to burst my scar, and my muscles really really hurt as Im coughing!!!

I suppose its good exercise for those muscles but oh dear!!!

Other than all that Im normal - well as normal as is possible for me!!! Its great not having to worry if I have a late breakfast or skip lunch while out shopping!! I do remember all the time what I was like so I am so glad to have had the surgery! I can actually lay on my side and have slept on my tummy once or twice. Sunbathing on holiday was tricky cos I kept getting stuck on my front and not being able to turn over easily!!! So four months now and it is still difficult to roll over!!!!! Oh yes the sunbed back fell back while I was leaning on it and OH MY GOD did it hurt! people around the pool must have wondered what the fuss was about!!

Reading Lauras post above, I could never tell how low i was getting or how my sugar levels rose after eating. Luckily i knew in time at a certain level but even then that wasnt consistent. I couldnt tell sometimes if I was going to be 4, 3 or 2.5! Sometimes I felt like I was really low but wasnt!

Peggy - it did make me laugh when people would say ” oh Im like that” or “Thats what happens to me” in fact I had one person say that her friend had exactly what symptoms I had!
In fact one of my so called friends played down my condition to other people when we found out about it and told another friend it was nothing!! Good friend hey!!

Enough from me!!

Bev - What happened during your 72 hr fast?

Good luck everyone whatever stage you are at!!
Aileen

Wednesday, 6th June 2007 at 12:20 pm

Peggy and Homa,

Thanks for asking about the recuperation. I have been doing really well, thankfully. Due to the incision being so small, I haven’t been experiencing much abdominal pain. Probably the last time I felt pain when I sneezed, for example, was about 4 weeks after surgery (which was on April 19). My sugars have returned to normal (I came out at 78 after fasting all night) and I have started biking and running again. The one thing I have been really, really careful with is heavy lifting…I think even a few weeks ago I lifted something around 10 lbs (the surgeon recommended nothing above 20) and I felt a lasting pain in my side. And I started ovulating again, which hasn’t happened in a while. My endo is convinced that the heavy insulin load may have interrupted my normal hormonal flow. So, in the end, I couldn’t have asked for more…I feel extremely lucky to have made it to this point in one piece.
Bev

Wednesday, 6th June 2007 at 1:12 pm

Well it took the whole 72 hours to drop my sugars over night each time they plumitted quit significantly so they say??? They also sent me for 2 chest x-rays because he thought he had seen something on it so who knows. I only went down as low as 2.5 mmols I think thats about 45 in America. So until I get my results wich my consultant said can take weeks I do not know what is going on.

I think my con does not think it’s a insulinoma but he wont know until the results. He is conscerned about my sugar drop over night. Will keep you updated.

Hi EVERYONE…..B
Lauren Hatten

Wednesday, 6th June 2007 at 2:55 pm

Hey everybody its nice to hear from you again! I am in the hospital(MDAnderson)right now on a glucose drip, my surgery is tomorrow morning. Its on the head and bigger than I realized, I got to see my CT scan. My surgeon has told me that he will be grafting a piece of my colon to close the hole in my pancreas after the tumor is removed because one of the biggest risks w/ this surgery is that the digestive enzymes of the pancreas can leak.
My surgeon (Doug Evans) seems to be the authority here at this hospital and after speaking with him I’m sure I’m in good hands. They are flabbergasted that I have lived this long with this. He also said that some people with insulinoma do have higher proinsulin than insulin. I will write back as soon as I am able to after the surgery.

One other thing my incision will be straight down the middle of my stomach from my rib cage to about 2 inches below my belly button. Has anybody else had a vertical incision?

Lauren
Karen

Wednesday, 6th June 2007 at 6:48 pm

Hello, I just found your website and i also have insulomia…i would like a list of all the symtoms everyone has….i had to keep telling the doctor i had this but they all said no you don’t have it…but i do…they found a tumor…its really hard to explain what you have when you don’t really understand it…i have alot of symtoms..but just want to find out what everyone has….thanks for your time…i thought i was going crazy….but now i know….take care and hope your well…karen
Gayle

Wednesday, 6th June 2007 at 9:57 pm

I was finally diagnosed on the 5th with an insulinoma. I’ve had symptoms for over 5 years. For the first 3 years my gyno told me it was stress causing my symptoms. Finally two years ago my GP diagnosed me with hypoglycemia. The symptoms have become increasingly worse over the last couple of years. I ended up in the ER one day a few months back after nearly passing out at work. My GP then referred me to an Endocrinologist. The Endo had me fast for as long as I could at home and then have my husband drive me to the hospital lab to have blood drawn. This test got his attention since my glucose level was 50. He then set me up for the hospital fast. I lasted about 16 hours during the 72 hour fast. I also found that it took the nurses in the hospital a while to understand that my blood sugar would drop quickly once it started. Even the doctor thought I would last a couple of days. My level during this fast was 37. Besides the fast, I had 2 CT’s, a MRI which all showed nothing. Finally I had a endoscopic ultrasound this week which found the tumor. It is 1.5 cm and located on the lower part of the neck. It is on the outside but slightly embedded. I’m waiting on the final pathology reports but the doctor who did the ultrasound feels the tumor is benign. I’m hoping that the tumor can be removed by enucleation but won’t know for sure until I see by doctor in a couple of weeks. Does anyone have any idea as to what type of surgery I may be facing?
Laura

Thursday, 7th June 2007 at 12:54 pm

Karen
For me the only symptom was hypoglycemia. My blood sugars were between 27-40 every time I was checked by a doctor. Mu “72 hour fast” lasted until 10am the first day! I woke as a 54, was 45 when I got to his office, and was 32 an hour later. Good luck!

Lauren
I have not heard of vertical incisions, but I would guess it has something to do with the colon graf? Very strange and I wish you lots of luck with your surgery!!

Aileen
Great news on your recovery, I can’t wait to get there myself!!

Everyone
Going back to what we talked about before, today it came up with 2 different people that I have hypoglycemia, and both of them responded “me too”! I guess I am starting to understand why medical professionals don’t believe you when you tell them you are hypoglycemic!
Laura

Friday, 8th June 2007 at 3:02 pm

Welcome Susan,
I met with my surgeon this morning and it sounds like you and I have almost the same thing. Mine is a bit smaller, but a similar location. What my surgeon said is I have a 1/3 chance to have an enucleation which he says is 4 days minimum in the hospital with 4 week recovery at home. 1/3 chance of a partial pancreanectimy (sp?) which he says would be 6 days minimum in the hospital, but still about 4 weeks recovery at home, and a 1/3 chance of a Whipple which would be 9 days minimum in the hospital with 6-8 week recovery at home. I hope this helps!

Lauren,
My surgeon is doing a vertical incision as well so you are not alone! He said pretty much breast bone to pelvic bone, sounds attractive! I hope you are doing well after your surgery! I look forward to hearing how you are doing.

Everyone,
Something interesting, my surgeon’s name is Dr. Matthews at the University of Chicago hospital. He told me that unless I have a Whipple, I will not have any drains at all coming out of surgery. He said they are finding that they do more harm than good as they can lead to infection. If I require a drain after surgery, the radiologist can most likely place it without surgery. He said this is new theory and practice, but you should definately ask your doctors about it!!
Gayle

Friday, 8th June 2007 at 8:16 pm

Laura
Thanks for the information. My surgeon is at the University of Iowa Hospital so we are midwest neighbors! He will be doing a vertical incision as well. He did tell me before the insulinoma was found that he usually doesn’t do laparoscopic surgery but we would talk about it if it was found in the right place. I’m hoping it’s in the right place! I have an appointment with my surgeon on the 18th so I have to wait until then to find out more. I will ask about the drain after surgery. Hopefully this new practice is being done here too.

The thing that worries me the most about all of this is not knowing for sure what kind of surgery I’ll have until it’s over. A Whipple scares me to death. My surgery is scheduled for July 10. When will you be having yours?
Laura

Sunday, 10th June 2007 at 2:22 pm

susan,
June 27th for me. Good luck!
Tim

Monday, 11th June 2007 at 2:59 pm

My dog has insulinoma - want to use the drug Proglycem (Diazoxide) cannot find a pharmacy that carries the Capsule form - can anyone tell me where my vet can get the drug ?

Online I can find it on websites in Canada - no where in the US..
HELP
Peggy

Tuesday, 12th June 2007 at 9:16 pm

Hey, a vertical incision sounds better to me than the alternative.
Thanks for the info on the drain Laura, that’s something I was not looking forward to. Sounds like you’re next in line for surgery?
Who remembers their proinsulin level compared to glucose? Mine was 94 with a glucose of 32. That sounds high enough to me to assume an insulinoma. Now if they would just FIND IT!
Karen, feeling like I was going crazy was always my biggest symptom.
Tim, bummer for your dog! Can’t you just put the liquid form of proglycem in a capsual if that’s the only way your dog can take it? I just picked up mine today and the pharmacist said it was a 3700 dollar perscription! Do you have doggy insurance?
Laura

Wednesday, 13th June 2007 at 9:11 am

Peggy,
I do not see any proinsulin levels in all my blood work. I have insulin though:
Insulin 8.9, glucose 27
Insulin 11.3, glucose 51
Insulin 13.4, glucose 34
Insulin 6.1, glucose 32
Hope this helps!
Tim

Wednesday, 13th June 2007 at 5:00 pm

You can buy the capsule form in Canada for 160.00 for 100 - 100mg tablets….the diasease in my dog caused the back legs to get weak and fail. Today I had to put her down. It progresses extremely fast in dogs. Good luck to all..
Peggy

Wednesday, 13th June 2007 at 5:47 pm

Tim,

So sorry about your dog! :(
How common is that disease in dogs? It must progress a lot diferently in them, I’ve had this disease for 15 years!
Thank you for the info on Proglycem, I would much rather take that form. I will ask my doctor about it.
What kind of dog was he?
Angie

Thursday, 14th June 2007 at 3:24 am

Peggy

Just to let you know I think its fairly common in dogs and ferrets - I know because before this site was up and running all I could find was info for dogs and ferrets - hence my very first comment!! I was so grateful to find this for real humans! It became a running joke with a few friends that I could be put in the same class!

Tim

So sorry to hear about your dog!

Susan

Dont worry too much about the drains - in the whole scheme of things they really are just another tube! Believe me I had tubes coming out of everywhere to start with and to be honest my catheter was the worst! At least by having a drain you know what is leaking or not!

It is 4 months since my op now and really only now beginning to forget about it occaisionally, suddenly you think oh yes that didnt hurt or Oh Ive done that without thinking! My system is still quite low as Im having trouble shaking off a cold at the moment. Dont be worried if it takes longer than your doctors visualise to come out of hospital or ‘recover’.

Good luck to those having surgery and best wishes to those recovering!

Angie (still here)

Good luck to all having surgery and those recovering!

angie
Gayle

Thursday, 14th June 2007 at 5:50 am

The past several months I have been increasingly unorganized and a bit lazy. Please tell me these are also symptoms and they will go away after surgery!
Angie

Thursday, 14th June 2007 at 6:34 am

Susan

Surgery cant work that many miracles!!!

Seriously - I think thats the condition getting on top of you! When you feel better you will probably cope better. I had begun to think I was getting depression before they found out what what happening and I do feel more positive and energetic after surgery! Housework is still last on my favourites list tho!

Angie
post surgery, missed breakfast - ha no problem!!!
Leslie

Thursday, 14th June 2007 at 9:24 am

Hi,
I am looking for answers for my Mom. She was diagnosed with insulinoma about 7 years ago. Since then her husband has died (of natural causes) and she is living alone. She has a 8 - 5 job and seemingly manages relatively ok by eating all the time. She is 66 years old now. My concern is that because she lives alone she has no one around to notice if she is having an episode. She can usually tell when her sugar is dropping but has had a few episodes that have gotten out of hand. The morning after her husband died I had to call the EMTs because I couldnt wake her. When they tested her sugar she was below 10. Last night she had another major episode although I am not sure what brought it on (she ate regularly) but had my brother not been visiting her and called me when she became extremely disoriented and unable to focus her eyes I wouldnt have known and she wouldnt have been able to help herself. Her proposed solution is that I call her twice a day to check on her.

I want her to have surgery because her quality of life is worse than it should be. She is totally ruled by her diet - when to eat, what to eat… She is not monitoring her blood sugar or taking medication for this. She does have a bi-annual visit with her endocrinologist to make sure the tumor hasnt grown (it hasnt). I am concerned that if she waits much longer she might not be a candidate as her health might decline, etc.

She is convinced that the survival rate of the surgery is extremely low (based on my research that isnt true)and that only one or two hospitals in the country offer the surgery (i.e., the Mayo Clinic). We live in Alabama and I dont feel that any local hospitals are equipped for this type of surgery. I was wondering if anyone that has had the surgery has any statistics on their hospitals or surgeons (number of surgeries, successes, etc.). Thank you so much for any assistance you can provide.

Leslie
Lauren Hatten

Thursday, 14th June 2007 at 10:18 am

Hello everyone I had my surgery on Thurs and am now 7 days post op. Everything went well. My tumor was 1.9 cm on the head and I now have an incision from my breast plate to about 2 inches below my belly button. I can’t say the whole experience was pleasant but it was so totally worth it because my blood sugar has been WONDERDERFUL! It was on the high side Post op it got up to 191 but then it stabilized and has been between 85 and 140 24/7 so I am thrilled!It is an unbelievable feeling not to be a slave to your sugars!
Lauren
Peggy

Thursday, 14th June 2007 at 11:04 am

Susan,

Definitely symptoms! I use to be quite organized…not anymore. That’s one of the first things I noticed to change. I also could not plan and had no creativity, previously my favorite things to do. I also couldn’t do anything alone, like get myself to go for a walk. This all came with a bout of depression which I have never experienced before. That was at the beginning and lasted 9 months. Things are a little better now, with the duration of the disease I guess. Except for the organization which has gotten worse. I’m planning to leave for Yosemite in 5 days, and I’m having the hardast time just trying to make out a list. My guess is you are not a lazy person.

I’ve had this disease for so long, my fear is that I have gotten use to being the way I am now, and that I won’t change back, when and if I ever get this taken care of.

Hopefully your surgery will be soon and this will all be behind you.

Angie,

I remember your first comment about ferrets! Yours was the only comment on here when I found this sight. You are such a positive person, I really enjoy hearing from you. I’m glad that you are at the point where you can start to forget about the surgery. Take care.
Laura

Thursday, 14th June 2007 at 11:21 am

Lauren, sorry if this is a duplicate, but I tried to post this message and it is not showing up for some reason!

What kind of operation did you have? Are you still in the hospital? How is your recovery going? Better or worse than expected? Did you have drains? I am getting very anxious about my surgery so more info the better! Thanks and I am glad you are doing so well!

Laura
Peggy

Thursday, 14th June 2007 at 11:32 am

Congratulations Lauren!!

How do you feel right now? Are they giving you decent meds? I remember a couple people saying they had tremendous pain when they first woke up. Hopefully yours was under control. Are you up and moving much? And when do you get to be home with your family? Things are going to be so different. I think you’re the only one who has had it as long as I. You’ve given me hope. :)
Tim

Thursday, 14th June 2007 at 12:47 pm

My dog was a Vizla mixed with Yellow lab..Its is very common in Ferrets, not so much in dogs. My vet said this was the 2nd case she has seen in 15 years. Very hard to diagnos, then its to late. Its sounds like it is very treatable in humans - thank god for that..
Gayle

Thursday, 14th June 2007 at 5:55 pm

Angie & Peggy,
Thanks for describing exactly how I’ve been feeling for quite a while. I used to love to work in my flower gardens. I bought one flat of annuals 3 weeks ago and still don’t have them all planted. I seem to have a hard time finishing most things that I start. I too leave for vacation in a week and am having a hard time writing an organized list. My office at work is a mess and I have a million projects started but not finished. I have also had what I think are bouts of depression. I am so ready to be my old energetic self again. I am a person that has always hated clutter. These days I see clutter all over my house. It drives me nuts but I don’t have the ambition to do anything about it.

After reading all of the above posts I am really looking forward to having this surgery next month. I found out today that my surgeon is going to attempt to remove the lesion laparoscopically. He isn’t promising that I won’t wake up to find out he had to do open surgery but he is willing to try removing it laparoscopically. I had my ovaries removed a couple of months this way and it was a piece of cake.

This message board is great and I wish I would have found it earlier.Thanks to everyone!
Gayle

Saturday, 16th June 2007 at 3:45 pm

Lauren,
My levels are as follows:
proinsulin - 61
c-peptide -1.5 ng/ml and 495 pmol/L
insulin - 11
beta-hydroxybutyrate - .7
glucose - 37
Lauren

Saturday, 16th June 2007 at 6:03 pm

Peggy, Laura, Susan,
I am recovering just fine. My surgery was not laproscopic. I am cut strght down the middle of my stomach. Honestly, the incision was really not that painful. The drugs take care of that. The most painful thing was the gas. I guess its trapped air from when you are open and they are moving things around. The gas was extremley painful and gas-x and pain med don’t do anything for it, you just have to wait and walk it out. My dad made me get out of bed the 3rd day after the surgery and start walking and it really helped with my recovery.

I was is the hospital exactly a week. I did not have a drain but I think I should have because the day after the surgery my abdomen filled up with so much fluid I looked like I was carring twins. The put a tube down my nose into my stomach to drain the air and gas. I had that in for 3 days. It wasn’t as bad as it sounds. I never asked why they didn’t give me drains.

The best news of all is my blood sugars, it is truely miraculous I can go as long as I want to without eating. My blood sugars have been in the 90-100 range. It feels so good I can’t wait to get my body healed and get back in shape! The surgery is SO totally worth it!

Lauren
Laura

Tuesday, 19th June 2007 at 1:29 pm

Leslie,
I have done a ton of research on the surgery and have seen nothing that would discourage me from having the surgery. The risks seem very minimal to me vs. the quality of life that you can achieve. As for what hospitals do it, there very well may be one in your area. Mayo is ranked #1 in the country. Check out this link for other well ranked hospitals:
http://health.usnews.com/usnews/health/best-hospitals/rankings/specihqendo.htm
You need to find a surgeon who has done a lot of these is the key. The pancreas is difficult to operate on, but hopefully after meeting with a surgeon, your mom will come to the same conclusion. Good luck!

Laura
Susan

Tuesday, 19th June 2007 at 7:16 pm

I met with my surgeon yesterday for the last time before my surgery in July. He is an oncology and endocrine surgeon at the University of Iowa Hospital. He feels I have a 50% chance of having the insulinoma removed laparoscopically and only 2% chance of needing a major resection such as a Whipple. This hospital only sees 2-3 insulinomas a year which is my concern. He has extensive pancreatic surgery experience but not a lot of insulinoma experience. He seems like a very knowledgeable doctor and I am very impressed with him but I’m wondering if the lack of insulinoma surgeries should make me look elsewhere. Please let me know your thoughts.
thanks
Homa

Tuesday, 19th June 2007 at 7:49 pm

Susan
That is great that you are going to have your surgery done soon. I bet you can not wait to get it over with. As for being concerned about your doctor not havintg that much experience with insulinoma. I don’t think you need to worry about it. Since insulinoma is so rare, it is hard to find a hospital that deals with that many cases. The only exception that I have seen has been Mayo clinic. But if your doctor has done this before and the operations that he has done have been successful I would not worry about it. it is important to have a trust in the person who is going to do the operation. That is the main thing. when is your surgery in July? Best of luck

Lauren
So good to hear that you are back at home and recovering. Where was the tumor at? and how big was it? I had the vertical insision done to me too. At first it looked kind of rough, but with time it started to look better. it has been almost ten month since my surgery and it is healing pretty good. I went and got my spiral CT done today. I sure hope they can find it. Wishing you a speedy recovery.

Everyone
As I mentioned I went and got my CT done today. What a fun thing to do for a birthday, lol. I am sure many of you can identify with how frustrating it is to go and get any kind of test done when you have to fast. a simple test turns into such a big ordeal. I only had to fast for four hours. I ate a big breakfast at eight thirty and they said I could drink apple juice if I needed to. but by the time I got to the doctor and got the test done and ate something it was two PM. As soon as I started eating. i felt cold and shaky. I guess my sugar had dropped down and I did nto know it. I have gone through all of this before and not looking forward to go at it again. I think i am the only preson here so far that has had an unsucccessful surgery for insulinoma. When i looked it up on the internet I found out that only between three to five percent of the cases go through a second procedure. Has anyone else gone through this beofre or know of anyone who has? it would make me feel good knowing I am not the only one. I have to plan for my wedding and everything is kind of on hold until I find out when my next surgery going to be.

Angie and Aileen
Glad to hear that you guys are feeling better now.

Peggy
How are you feeling? have you had any more eposodes?

Best of luck to everyone
Homa
Linda

Tuesday, 19th June 2007 at 8:01 pm

Hi Peggy, Linda here I saw my endo. at the cinic on Monday. He is running some test this week and if they are negative he will be doing a 72 hour fast next week to rule in/out the insulinoma. My proinsulin level was 71 but my losest documented BS is 68 but I’m really systomatic at 68. He said it may be possible that it just isn’t documented yet. If the fasting is negative he is going to do a complete body scan to look for carcinoma. I’ll let you know what happens next week. My systoms have just been getting worse over the last 6 months but started about 2 1/2 years ago. the hunger and anger is unreal not to mention not being able to think clearly. I’ll email more later.
Susan

Tuesday, 19th June 2007 at 9:32 pm

Homa,
Thanks so much for your reply and information. We have something else in common, it is my birthday today too. Happy birthday!

The other hospital I have in mind is Mayo. I live about 4 hours from Rochester so it isn’t that far away. Mayo isn’t in my insurance carriers network but I’ve been told that I could be approved to go there if needed. But…I really don’t want to put this surgery off any longer and would hate to have to repeat testing and more doctor appointments. My surgery has been scheduled for July 10 and I most likely won’t seek a 2nd opinion.

I really get uptight when I know I have to fast. I will have to start fasting at noon the day before my surgery which scares me to death. I’ve got different instructions from the doctor and from a nurse in his office and have to get this verified. One told me clear liquids until midnight and the other said clear liquids up to 2 hours before the surgery. I’m so afraid of this and of having to eat something and then run the risk of the surgery being canceled.

I wish you the best of luck and hope your insulinoma is found this time. I had 2 CT’s, an ultrasound, MRI and finally an endoscopic ultrasound. The insulinoma was found with the Endo ultrasound. Have you had one of these done?

Good luck
Susan
Peggy

Wednesday, 20th June 2007 at 1:08 am

Hello everyone,

I’m leaving for yosemite in 2 hours! I can’t tell you how hard it was to pack..the organizational thing. But I’m so looking forward to being there. It’s a little scary because every year I go I end up having an episode. One year I ended up in emergency and last time I had the paramedics out. We can’t just not enjoy life though, right?

Susan,

Happy Birthday!!

I can’t blame you for wanting to get your surgery over with. Has your surgeon done those 2-3 surgerys?? After hearing Homas story I think I would op for a doctor with a lot of specific experience. You only want to go through that experience once. They’ve seen your tumor though, so that’s a different story. If my insurance would pay for Mayo, I would definitely go there. Did you look up the sights Laura put on?

I’ve always had to fast from liquids after midnight the night before surgery. You can always go in early and be put on an I.V. That’s what I always do. I usually have to convince them how much of a problem it will be though.

Laura,

Who is Leslie? Did I miss something?

Linda,

Since I’ve been taking a higher does of proglycem, I have symptoms at a much higher BS level now. Let us know what you find out.

Homa,

I haven’t had a major episode since May 19th. That’s one whole month! Thanks for asking.

Happy Birthday!
Laura

Wednesday, 20th June 2007 at 12:04 pm

Peggy, I missed Leslie’s post at first also! She posted on 6/14 at 9:24am regarding her mother.

Susan, if you are that close to Mayo, I think you should definately check it out. It is too bad they are not in your network, but worst case they should be able to give you an opinion on the doctor at your hospital!

As for fasting before surgery, my instructions said clear diet starting at 8am the day before. As soon as I saw that, I called my doctor because there is no way I could keep my sugar up on that diet. He said I can eat whatever I want the day before, that I should eat lightly after 6pm, and to go to clear liquids after 8pm. He also said that I can come to the hospital early and get a glucose drip if I need to. Bottom line is when in doubt ask because even the instructions he gave me were wrong!
Angie

Wednesday, 20th June 2007 at 1:04 pm

Susan

You should not be fasting without being under the hospital care. Under no circumstances would my doctors allow this. Ok everyone does things differently but if they are not aware of the danger that puts you in decide carefully if they are the people to look after you!!

Sorry cant write more at this moment but will be back soon!

Good luck

Angie
Lauren

Thursday, 21st June 2007 at 2:10 pm

Thanks Homa, it was 1.9 cm on the head of my pancreas, next to the main duct. My insicion is looking pretty nasty I hope my scar isn’t too bad.

I was put on a glucose drip the day before my surgery and I could only have clear liquids. I also was given an enema-that was lovely!! After the surgery it was a week before I was able to eat food again I was on IV fluids until then.
Tone (Laura's Husband)

Wednesday, 27th June 2007 at 12:03 pm

Just to let everyone know that Laura just finished her surgery (I am in the waiting room waiting to see her). The University of Chicago doctors were able to expose the back/head of the tumor and do an enucliation. As expected her blood sugars shot up and now they have her in recovery before they move her to the ICU for probably a day.

Thanks for communicating with my wife over the last two weeks, you were able to shed a lot of light on this condition. With the knowledge that was gained I believe she was able to enter the operation with a little less worry. Now here’s hoping that she is able to get through recovery with the same flying colors.
Penny

Friday, 29th June 2007 at 10:57 am

First of all~ yeah Tone & Laura! An enucleation is exactly what I am praying for!! I hope she is recovering well.

Hello EVERYONE!!!! Are you guys for real?!!! I am sitting here in awe, reading all of your comments. I have also been diagnosed with insulinoma and have felt so “alone” these past 2 1/2 years, not knowing you all were out there too! It is SO GOOD to hear you all talk about your low blood sugars and the struggles you’ve been through (although i wish none of us had this!)…

I am 30 years old and I first noticed I had a problem when I got pregnant with my daughter 2 1/2 years ago (although,now after experiencing all the symptoms of hypoglycemia so often these past few years,(too numerous to count) I can look back and see various times that I had low blood sugar as long as 13 years ago)…so, I was 6 weeks along and didn’t wake up one morning. My husband had to call an ambulance, and when I woke up in the ER, they said my blood sugar was at 14 ! The doctor there said not to worry much about it since I hadn’t had any blood sugar issues earlier in my life, just to eat more often. Well, then it happened again a week later~and i was at 19 that time. My family doctor and my OBgyn both said it was common for pregnant women to have lower blood sugars and to just eat more complex carbs and protein (I dont think they really believed I had gotten that low). So, I did just that and pretty much kept it under control by eating regularly although i never checked my blood sugars at all. Looking back at this time and at symptoms i had (at times: blurred vision, confusion, tingly tongue, nightsweats, lightheadedness, stressed/anxious, etc.), I KNOW I was living with very low blood sugar during most of my pregnancy. Then after i delivered my daughter, I figured since I wasn’t pregnant anymore I was back to normal, so one day after not eating for 4 hours I had another episode~ my husband came home to find me laying on the bed crying and all sweaty and non-responsive*luckily he was able to get me to sip orange juice and i became conscious again. But that is what got us thinking that i really had some sort of problem going on…

So, that’s what started 2 years of going to doctors and being extremely frustrated and gaining weight because I had (and still have) to eat every 1-2 hours, and wake up in the night to eat….I could go on and on about all that, but to make a VERY long story short, i finally found an endocrinologist an hour away that really started the ball rolling. Within a month of seeing her, I had various blood tests, an MRI and CAT scan (which didn’t show anything) and finally an Endoscopic Ultrasound which showed a tumor in the neck of my pancreas!!! I didn’t believe I would ever be so excited that a tumor was found in my body!

So, now I have surgery scheduled for July 11th. I am REALLY looking forward to getting this tumor out but I am REALLY nervous about what they may have to end up doing with my pancreas. This surgeon is at St. Joseph Mercy Hospital in Ann Arbor, MI and is supposed to be good from what I hear, but he doesn’t necessarily specialize in removing insulinomas…has removed a few gastrinomas and various neuroendocrine tumors and has done many pancreatic surgeries in itself…so I guess I should trust in it (or moreso trust in God that everything will be ok) and stop second-guessing. I have a 2 yr. old and 5 month old and my husband is home for the summer, so the timing of the surgery is good for us and if I looked to go elsewhere it would mean more testing and more time down the road, not to mention more expenses for travelling…Aughh! So, I hope I am making the right decision. I always tend to overthink things, so even if my surgeon was the #1 in the world I would still be unsure about it!

It will be SO EXCITING to see how I feel once the surgery is over…if I feel any different, or young again. I can’t wait to NOT have to eat all the time, especially in the middle of the night. and to not have to think about food ALL day long EVERY day, making sure I have something with me when i go out, wondering what food to eat next, etc… At this point, I really hate food!!!! (okay, sometimes, i do actually enjoy a piece of chocolate!) :) but anyhow, thanks for reading all this. Sorry if it is too long, but i really had to get my feelings out to you all who actually understand! And thank you for sharing your stories. I can’t tell you how great it was to find this site!

Penny
Peggy

Friday, 29th June 2007 at 4:22 pm

Tone,

Thank you for letting us know how Laura is doing. I’m glad the surgery went well and I trust the recovery did as well.
Hopefully the hospital stay won’t be lengthy, I know how hard it is to be away from, and for the little ones. Give Laura our well wishes and please keep us posted on her recovery.

Leslie,

Are you still out there? I finally read your post, your mom needs to be checking her sugars regularly! If she’s seeing an endo and her sugar has been that low, I can’t understand why he wouldn’t be prescribing proglycem, as well as a monitor. My symptoms have definitely decreased with the duration of the disease. Your mom might not be able to recognize when she is getting low as well as she use to.
One of the first times my family called the paramedics to wake me up, was after an emotional experience. The scary thing was that a man I knew also could not be woken due to low blood sugar that same night. He went into a coma and never came out of it. Her sugars may not be low as often, nevertheless, calling twice a day really isn’t sufficient I’m sorry to be so forward, it’s just that we understand how dangerous this disease is and I wish there was someone there to help me back then.

Your mom is fortunate to have you to care for her. Hopefully she will see the benefits of surgery. At first I was opposed to the surgery, only because I thought I had learned to deal with disease. It took awhile for me to realize that having seizures meant that I did not have control of the problem. It won’t get better, it can only get worse.

From what I’ve read,the survival rate of the surgery was only low when they first began to do them. That is no longer the case. If they have actually found the tumor I would go for it! Do you know if it is on the head or tail?
I’m sure if they could do a laporoscopic procedure they would’ve told her.

Please let us know of any progress, all I know about number of procedures is from a doctor at UCI in CA. He said he’s done 50 himself. Good luck.
Peggy

Sunday, 1st July 2007 at 3:24 am

Hi Penny!

I’m really glad you found us too! I know just how you feel, when I found this sight it was such a blessing, still is.
It’s great to feel as if everything you’re experiencing is normal, at least for some people.

So your surgery is July 11, the day after Susans. It sounds like you are going through the same thing as her, wanting to get it done. I can’t blame you. Her doctor gave her the percentages of the ways the surgery might turn out. I wouldn’t worry too much, most everyone’s surgery on this sight went extremely well, I’m sure yours will as well. You’re fortunate that your husband can be home with you, especially since you have little ones. I was only 32 when I first noticed symptoms, how different my life would’ve turned out if I had had the surgery back then. Maybe it will be a new life, if I ever get the surgery. Although I finally did get use to eating all the time, unfortunately!

Sorry you’ve had to go through this, but thanks for making our little on line club bigger. :)
steve

Sunday, 1st July 2007 at 10:41 pm

Hey guys,

I am new to the Insulinoma club! I was diagnosed this june after they had thought that my Hodgkins Lymphoma was back. They did a laperotomy and did a biopsy on the lymph nodes near the pancreas and that is what the pathology reports said.

at this time, my Oncologist and my surgeon are deciding what to do about it. i guess because it is in my lymph nodes, it will make it difficult to cut out. so now we are in a hurry up and wait pattern. they will do another CAT scan in another month to see if it is growing, and then it sounds like surgery time. but nothing is set in stone.

I thought that the only group of people i would find with Insulinoma would be ferrets (according to Google! LOL) thanks in advance for all of the info that you guys share! best wishes to you all!

Steve
Lauren

Monday, 2nd July 2007 at 8:39 am

Welcome Penny, your life is about to get a whole lot easier, after your recovery of course. I have 2 small children as well and the hardest part has been keeping my 3 yr old off of my stomach. Even to stretch out a hand to block him from jumping on me was painful at first. I am surprised to hear you’re blood sugars dropped while you were pregnant. For me while I was pregnant was the only time in the last 20 years I felt normal because my sugars were normal while I was pregnant. My ob said most women’s sugars are higher when they are pregnant and many of them turn diabetic while pregnant. It just goes to show you the wide range of opinions doctors can give you. Anyway I hope you have a good support system at home, you will need it. Your husband has his work cut out for him!
Lauren
Angie

Monday, 2nd July 2007 at 1:42 pm

Hi Steve

Glad to hear from you - its just us and the ferrets here!

So not satisfied with having Hodgkins Lymphoma, you are lucky enough to join us - odds being 4 in 250,000 for an insulinoma, what are the odds in having both?

Any questions ask away someone will help - its been brilliant!

Everyone

Ive just been signed off for a year! They dont want to see me unless I have any symptoms! Whoopieeee!

Everyone says how well I look and although tired I do feel Im getting there!!

So dont give up hope anyone (including Peggy!) and where ever you are with treatment or diagnosis it will be worth it in the end.

More later!

Love Angie
steve

Monday, 2nd July 2007 at 9:29 pm

yeah angie, i have some luck huh? LOL now why cant i win the lottery!!LOL nice to meet you!
Peggy

Tuesday, 3rd July 2007 at 12:56 am

Steve,

Wow! How long ago did you have lymphoma? I’ll bet you were glad to hear it was insulinoma. so, you are saying that they’ve found an insulinoma in the lymph glands? Can’t they just remove the lymph nodes if that is the case? I guess I’d better ask my doctors to start looking other places instead of just the pancreas.

Your odds are even less in being a male with insulinoma. Out of about 20 of us,we’ve only had one other male on this blog, Brendan.

I’m sorry you have to join us, but I guess it’s better than your Hodgkins Lymphoma being back. At least you can spend the month waiting it out with the rest of us.
Angie

Tuesday, 3rd July 2007 at 5:02 am

Peggy

When I had my calcium infusion test although I was down for just the liver and pancreas some of the staff were under the impression they would be doing a ‘whole body’. Thats when they check your whole system for insulin producing cells in case they have lodged somewhere else - it may be an idea to pursue that!

What a thought! has any of your doctors considered it may not be in your pancreas???????

Angie
Lise

Tuesday, 3rd July 2007 at 2:28 pm

Hello,
I have recently found out that my pancreas is overproducing insulin. I dont know much about this and have been doing research on insulinoma. How hig were your numbers? I’m a little scared…I’m 37y.o. with 6 children and am in school to be a naturopathic doctor. I am going in on thursday to have my c-peptide levels checked.
Any info would be helpful.
Thanks,
liz
Penny

Wednesday, 4th July 2007 at 6:24 am

Just a quick question, before I we leave for a few days~to those of you who had surgery, WHAT did you DO for all those days you were in the hospital?! I’m worried I’m going to be bored out of my mind. Any suggestions would be greatly appreciated! (thanks for the nice welcome notes peggy & lauren! hi steve! hi angie~your updates are definitely are encouraging!)

Penny
Susan

Wednesday, 4th July 2007 at 8:51 am

I check into the University of Iowa Hospital on Monday to start fasting for my Tuesday morning surgery. I’m scared but also very anxious to get this over with. I’m also looking forward to only eating when I’m hungry rather than every few hours. I’ve been very lucky with this whole thing though. Except for a dozen or so bad episodes, I’ve been able to keep my symptoms fairly mild as long as I eat regularly. I have gained about 25 pounds however which has been ok for me because I’m quite tall but am also anxious to shed a few pounds. I’m 49 years old and have been fairly active my entire life but have become some what lazy and depressed over this whole thing. I’m hopefully going to be my old self again very soon. :)
Thanks to everyone for all the information and encouraging words. I’m so glad I found this website. I will let you know how the surgery went once I am able to get to a computer.
Good luck to everyone!
Angie

Wednesday, 4th July 2007 at 9:17 am

Penny

I was in hospital for two weeks in the end. The first few days after surgery you really dont want to do anything. I had a lot of visitors and watched the television. Although Im a really big reader I actually found that I didnt want to read a book, I think my concentration wasnt up to much. I did read and flick through loads of magazines.

As I was in a ward of 12 women, (NHS) some of us were quite sociable. As soon as each of us was up and around after our respective ops we would walk to the lunch room together - avoiding the physios that hung around who were waiting to pounce on those who didnt move around enough for their liking!

With the hospital regime of obs, medication, breakfast, blood tests, washing, visitors, medication, obs, lunch, afternoon nap, visitors, dinner oh yes obs and medication, washing, medication, obs and sleep it was quite busy!

I did spend time “milking” my catheter - it didnt always flow so it helped to pass the time, I would have missed the TV tho if I hadnt had one, I could just chill out with some soap or other!

When you get bored you are ready to come home!

I made a couple of friends in the ward who I still see, in fact we met last week to compare scars - mental and physical!

Good luck Im sure youll be fine!

Angie
steve

Wednesday, 4th July 2007 at 11:46 pm

Hey peggy

i had lymphoma two years ago to the day they found the enlarged lymphnodes that turned out to be insulinoma. i am not sure how long i had it before is was Dx’ed, but i went through 6 months of CHemo, and things were clean…..yeah, my luck is great!! thanks again for responding!

so everyone, what were your symptoms? i personally dont think i have many other than the occasional hypoglycemic episode where my blood sugar plummits to like 50 or less and i need to eat like 3 PB and J’s to start feeling better!

any mood swings? just curious because it seems i have had a short fuse lately, but htat could also just be stress!! (i dont have ANY idea why that could be!LOL)
Peggy

Saturday, 7th July 2007 at 1:34 pm

Hi Steve,

Any mood swings??? Every time I start to cry I just go get a drink of milk and then I’m fine…for about an hour!
Most typical symptoms have dissapeared with the duration of the disease, like irratibility. But low sugar still messes me up mentally and emotionally.
steve

Sunday, 8th July 2007 at 11:54 pm

Thanks Peggy! I was wondering if that could cause the mood swings. I havent had too many low blood sugar incidents, so i really dont konw what else to look for!
Penny

Monday, 9th July 2007 at 4:12 pm

Angie,
thanks for the advice about the hospital. it may be a stupid question, but what are obs? The more i think about it, the more I am nervous about my stomach muscles getting sliced. how was your recovery with that?

Steve,
I definitely agree with being moody ~ seems like when i get in the 50’s i get very tense, stressed, irritable & easily agitated. i’ve also had numerous other symptoms at various times: light headedness, blurred vision, tingly hands, tingly tongue, nightsweats, but yes, the stressed out part would definitely be the most common for me! have you checked your blood sugar when you are feeling stressed? as with peggy, i also down some milk when i feel that way.

Susan,
i’ll be praying for you and thinking of you & your recovery. i wish we were going to be at the same hospital so we could go through this together! mine is on the 11th. good luck!

penny
Angie

Monday, 9th July 2007 at 4:30 pm

Penny

sorry - “Obs” are observations, which is blood pressure, temperature, blood sugars and heart rate, supposedly done 4 times a day!

Dont worry about your stomach muscles too much. They do take time to recover and even after 5 months its uncomfortable to cough sneeze and laugh, but that depends on the state of them before as well I would imagine! and difference in healing between different people.

Good luck on the 11th to you and to susan with your surgeries!

Regards Angie
Peggy

Tuesday, 10th July 2007 at 5:42 pm

Penny and Susan,

If spouses are reading this, please let them know that I am praying for them. I wish we were closer so I could visit.
Let us know how they are recovering!

Laura…how are you doing??
Laura

Wednesday, 11th July 2007 at 11:11 am

Hello all! Well it is exactly 2 weeks since my surgery and let me tell you it was a lot of fun. The good news is they did not have to do the Whipple as they were able to enucleate the tumor which was great news. That being said, I still spent the first 24 hours in ICU because my sugar levels were so HIGH! Isn’t that crazy? I had an insulin IV to keep my sugar in check. Then I spent another 5 days in a regular room so 6 days total in the hospital which was not so bad. As for fasting the day before, my doctor did not admit me to the hospital early as I thought he would based on everyone else above and what they did. He let me eat all day until 6pm. After 6pm, I was to do clear liquids only until midnight, then only glucose gel from midnight till my surgery. It worked, it wasn’t fun as I hate regular soda, but it did keep my sugar up.

Since the surgery, I have had no low blood sugar at all, in fact, the lowest reading I have gotten is 105 so now I am what they call high normal so I am on the high side of the normal range. My scar is pretty awful, it goes from my bra to about 3 inches below my belly button, very attractive. They closed with staples which they removed yesterday. I had no drains which was great, one less thing to worry about.

For pain meds, they used an epidural that they put in before the surgery. I had a big problem with it however in post op. Evidently they had to place teh epidural very high due to how high the incision started, the problem was I was lying flat so the epidural was “pooling” in my chest and not getting to the places where it hurt. Once they figured it out and sat me up, it worked really well. I liked it because I kept a pretty clear head while getting good pain relief. It was a walking epidural so I was still able to get out and walk pretty much right away (not in the ICU, but shortly after). AFter the epidural, I changed to a PCA which was also great because it is continuous pain relief, there are no ups and downs as there are with oral pain meds. I did not go to the vicodin until the night before I left the hospital.

the eating part is the best part. I have lost 12 pounds already which I am so happy about. I am eating whatever I want whenever I want which I have not done for so long, it is amazing! I even had coffee for breakfast today and I am fine!!

I look forward to reading everyon’e posts to see what is up with all of you but for now, I am off to take a nap! Good luck everyone!

Laura
Lauren

Wednesday, 11th July 2007 at 2:39 pm

Congrats Laura I know how you feel its a wonderful feeling isn’t it? I have the same vertical incision you do. I was shocked how long it was I couldn’t wear a bra for a while cause it started at my bra line all the way down to my belly button as well. Oh well no more bikinis!!

If anybody knows anything about the best scar medication please share. A friend of mine’s plastic surgeon told her to use scar guard ($35 over the counter)so that’ what I’m using. I think its way too early to tell if its helping.

Lauren
steve

Wednesday, 11th July 2007 at 11:46 pm

Congrats Laura!

I have a similar scar as well, but mine was just for the biopsy! it doesnt go up that high, just to about mid stomach down below my belly button. Thanks for sharing your experience! it sounds like that might be the route they go with me as well, though we are still up in the air. i meet with my surgeon and Oncologist next week to go over stuff some more. Congrats! and hope you heal up quick!
Susan

Sunday, 15th July 2007 at 6:14 pm

Hello All,
I had my insulinoma removed on July 10 and went home on July 12. I luckily had laparoscopic surgery which went well. Unfortunately though, my surgeon also found 3 very small tumors on the bottom side of my stomach which he removed by cutting a thumb length of meat out. He feels they are malignant but are a type of tumor (I don’t remeber the name) that all the treatment needed is to remove them. I am SO thankful I had this surgery or who knows what would have happened in time.
From what I’ve been told but don’t remember is that I was in quite a bit of pain when I woke. I was in recovery for about three hours and the surgery also took 3.
I got very sick from the morphine and once that was gone I felt pretty good. Early Wed morning I had a 100 degree temp and a lot of stomach pain. The nurses told me it was gas from the procedure. I was discharged on Thursday and start to run a temp again that night. I woke during the night with worse pain the previous. I called the hospital and they told me to walk it off. Which didn’t help this time. I doubled up my pain meds and finally it subsided. Friday afternoon I was running a 103 degree temp and had severe stomach pain. My doctor sent me to my local emergency room who stabilized me and transfered my by ambulance to Iowa City where the surgery was done. The surgeon met me in the emergency and thought I probably had a hole in my stomach. He ordered a CT and expect to do emergency surgery. The CT showed no tear, (thank god). I think I totally would have lost it if I would of had to have another surgery. They really are sure yet what the problem is but suspect either pancreaitis or a stomach abscess. I have been on antibiotics and also enzyme production from my pancreas has been stopped with meds.
The best part about all of this is my blood sugar has remained around 150!
Peggy

Wednesday, 18th July 2007 at 11:43 am

Hi Susan,

I hope you’re beginning to feel better! They probably wouldn’t let you eat if it is pancreatitis? How does that feel? Do they think that the antibiotics will take care of the problem? I sure hope so. You’ve really been through it. Sounds like your blood sugar is a little high. Are they concerned about that at all? Hang in there and let us know how you’re doing.
Peggy

Wednesday, 18th July 2007 at 11:54 am

Laura,
I’m glad to hear that you’re recovering well. Good info on the epidural. It sounds better than the morphine they gave Susan, that makes me really sick as well.

My last MRI didn’t show anything. Now they’re thinking it’s nesideoblastosis(sp?), which means random cells producing too much insulin. Guess there’s nothing they can do about that, besides removing part of your pancreas…oh well.

Steve,

What did you find out from your doctors?
Susan

Wednesday, 18th July 2007 at 12:13 pm

Hi Peggy,
I finally got home yesterday and feel pretty good. I’m just very weak and tired. I lost 20 lbs in a week so I’m sure that has something to do with it to. The doctor still doesn’t know why I was running a high temp. The blood cultures never grew anything.
I did have pancreatitis which definitely was not fun. You are correct, no food and nothing to drink. I was only allowed to wet my lips with a sponge. I got used to it though as I really had no appetite. I now am on a low-fat diet for a month. The antibiotics really did the trick and I’ll continue taking them for 2 weeks.

My blood sugar is still a little high but the doc assured me it will get better. He said sometimes it takes 2 months for it to become normal. At this point he is telling me to just watch how much sugar I eat. If it still is high at my 2 week check up he will probably put me on a diabetic diet. Now that will be a switch from what I’ve been used to. I may also need some insulin temporarily.

The best newis..the final pathology reports came back and the three little tumors that were removed from my stomach were precancer not cancer! He said they would have become malignant in 10 years or so. Had I not had an insulinoma to remove these may not have been found until they had become full blow cancer. This alone makes up for everything else.
Steve

Wednesday, 18th July 2007 at 2:22 pm

Peggy,

well, my surgeon didnt tell me much…..other than we are going to do a new scan in 6 weeks to see what it has done since the surgery. we are waiting until everything heals up from teh biopsy. I meet with my oncologist tommorow morning they are working together on this one…..

The surgeon said that because it is in the lymph nodes, he is still not sure what the best course of treatment would be right now. they are still throwing our “debulking” the tumor, but no mention of a whipple. he said that becasue it is in the lymph nodes, there is no guarantee that the whipple would take care of it, as it may be elsewhere in my lymph nodes. so basicly, i know nothing! LOL!! thanks for asking! i will keep you all posted!
Penny

Wednesday, 18th July 2007 at 2:32 pm

YIPPEEEEEEE!!!!!!!!!!!!!!!!!
Praise God. My surgery went smoothly, my tumor was able to be just scooped out with no apparent harm to the pancreatic duct and my blood sugars are normal now!!!!!!!! It is almost unbelievable. I slept all night lastnight without having to wake up to eat in the middle of the night and just for curiousity checked my sugar level upon waking and it was 90! wow. what a feeling.
I was in the hospital for 6 days. They also had me on a walking epidural for a few days which was great, then had me take vicadin which i got very nauseated with, so I didn’t take anything after that and didn’t feel much pain, just a little burning where the staples are, but not bad. I also had a drain in, which they took out when i left the hospital, and BOY that was an interesting unpleasant feeling as a tube was being pulled from my belly. My incision goes from the bottom of my breastbone to right above my belly button.
By the way, how does it feel to have staples taken out??
Alright, I just wanted to update you all. ;) and now i am going to get something to eat and its NOT because i have to!!!!!!! :) yeah!

Penny
Peggy

Wednesday, 18th July 2007 at 9:10 pm

Yeah Penny!!

It sounds like it went pretty well. So, were you bored those 6 days in the hospital? I guess compared with caring for young children it might be boring…Your scar is a little shorter than average, that’s cool.
I’m glad you’re feeling well, don’t do too much too soon!
:)
Penny

Thursday, 19th July 2007 at 3:05 pm

Hi Peggy,

I wish I could say my hospital stay was fun & exciting, but it was mostly tiring. They woke me up every 1/2 hr. in the night the 1st night and then 3-4 times the rest of the nights. I don’t think I got more than 2 hrs of sleep at a time. All the picking, poking, & prodding I could’ve done without too! I was so excited to get out of there so I could get a full night’s rest! All the people in and out of my room (nurses, doctors, nurses, friends, family, & more nurses) kept things interesting for me. :)

Penny
Peggy

Tuesday, 24th July 2007 at 10:03 pm

How are you feeling Penny?

I remember every time I have been in the hospital never getting enough sleep. But every 2 hours, man! I guess they wanted to make sure you were still with them. You would think that they would realize how important sleep is to healing. At least if they came in quietly, turned on the night light and would WHISPER, you could get right back to sleep. I’m sure you’re glad to be back home. I hope you are recovering quickly.

Susan,

It’s weird to think of something like insulinoma as a blessing…Have you had any more problems with the pancreas? Antibiotics are probably taking care of that. Don’t forget to take a lot of acidopholus. How’s your sugars, and the weight loss??

I hope you’re feeling stronger.
Susan

Tuesday, 24th July 2007 at 10:34 pm

Peggy,
I agree that it is a weird thing to be saying, but had i not had the insulinoma removed the stomach tumors probably wouldn’t have been found until they were malignant. My blood sugar this morning before breakfast was 119. In a week it has gradually dropped from 150 so I’m almost at a normal level. I’ve had no more pancreatic pain since I’ve been home. I am on antibiotics until I see my doctor on the 30th. I’ve lost about 20 lbs since the surgery which I am happy about. I had put on about 30 lbs. in the last couple of years. Because of the insulinoma it seems like all I did was eat to keep my sugars up. Now I just eat when I’m hungry. I haven’t heard about taking acidopholus. What does it do for you?
I’m feeling much stronger than I had been. My 2nd stint in the hospital really kicked my butt. I think not being able to eat had a lot to do with it plus I’m 49 years old. I am going to go back to work on the 31st and am looking forward to being with people again all day.

Penny,
I defintely understand what you are saying about not getting any sleep. I had a terrible time sleeping and don’t think I had anymore than 1-2 hours at a time. When I did sleep I had terrible nightmares. I’m assuming this was caused my the morphine or something else. Since I’ve been home the nightmares have stopped and I’m sleeping well.
Beth

Tuesday, 24th July 2007 at 11:34 pm

Hello Everyone,
By the grace of God I just ran across this website after searching for numerous months and not really finding anyone with insulinoma.

I guess I should start off by saying that I am a twenty one year old female, and about six months ago I was diagnosed with an insulinoma, after doctor’s ruling out every other possible problem that could cause all of the “typical” insulinoma symptoms that I was having. Also, I find it interesting…I too was diagnosed with PCOS at around sixteen years of age…seems to be a possible “coincidence”.

To date I have had two 72 hour fasts, both which showed the biochemical evidence that there was definitely an insulinoma. Next was two CT scans and an MRI, which showed a “gray spot” on my pancreas but nothing that they could really locate. Then came the venous sampling which showed that the levels of insulin were extremely high all throughout my pancreas. Then another CT scan…not really able to find anything on there.

So tomorrow I go in for an endoscopic ultrasound to see if a tumor can be located. Then, even if the tumor cannot be located, I go in for surgery on Thursday (July 26th). If they find the tumor tomorrow by endoscopic ultrasound, then they might be able to do a laprascopic procedure, otherwise they will do an open procedure, in which they will be doing another ultrasound, then they will feel around the pancreas for the tumor to see if they can find it that way, and if all else fails they will do a “blind” partial resection, as the bloodwork all indicates that there is an insulinoma.

Sorry for getting so long-winded, I am just ecstatic to find people who actually are going through this with me (or have been through it before). Anyways, I would love to hear from anyone and everyone…advice,comments,do’s and dont’s, etc. Thank you for taking the time to read this.

Take Care and God Bless,
Beth
Maria

Wednesday, 25th July 2007 at 6:49 pm

Hi Guys!

Glad to hear everyone is doing well. I had my surgery on March 8, and have been doing great! We even went to Europe for 2 weeks in May. I did have some problems with my drainage tube after the surgery and had to have 3 CT scans to make sure that the drainage had stopped. I was in the hospital for 6 days, had a tube for 2 weeks, and went back to work in 6 weeks.

My question is now I am experiecing a lot of hair loss. Has anyone else had this? My hair has gotten very thin and is really dry and straw-like. I just started taking Boitin vitiams to see if that helps. I am losing a handful every morning in the shower.

At first I lost about 40 lbs, which was great, but the weight loss has stopped now even though I watch what I eat and exercise every day. This may have something to do with my Thyroid - which has increased lately and my doctor increased my meds.

My scar is vertical - from the breast bone to belly button and it is now in the red line stage.

Glad everyone is doing well and just curious how those are doing now a couple of months out of surgery.
Lauren

Monday, 30th July 2007 at 1:13 pm

Welcome Beth! Where are you having your surgery? I would demand all tests possible before you go into surgery without them finding anything. I hope you are in the hands of some experienced doctors. What about the calcium catheter test? I read on these boards that that is a last resort test. Good luck I hope they find it!

Welcome Maria! I do not have any experience with hair loss but I suspect that your eating habits have changed greatly if you have lost 40 lbs and maybe that is why you are experiencing hair loss. Are you eating enough nutrient rich foods? Did you stop eating proteins? Just a suggestions. My incision was also vertical and is in the red line stage. I am 7 weeks out. The top of incision is starting to keloid and I think thats because whenever you twist or turn the skin stretches more at the top of the incision than the bottom(lots more skin/fat down there. I have only lost about 10lbs so far but I really can’t execise yet.

Lauren
Kim

Friday, 3rd August 2007 at 9:04 am

Hi. I have had hypo episodes for aboout a year. When i changed my diet in Feb ‘07 to no caffeine, no alcohol, whole grains and more protein, it seemd the symptoms changed from shaky, hungry to dizzy, disoriented, drunken sailor, seeing double. My bloodwork makes them think I have an insulinoma. I had a CT this morning and hoping they will see a tumor. Next will be an edoscopic ultrasound. Since i don’t live near a netro area I am concerned about finding a doc with insulinoma experience. Did you guys do a lot of research to find the right doc? If so, how did you go about that?

So glad to have found this site and hear your experiences. i thought I was going crazy there for a while!
Kim

Tuesday, 7th August 2007 at 11:16 am

A question - my endocrinologist is basing his insulinoma diagnosis on a simple overnight fasting blood sugar/insulin test. I didn’t do the 72 hour one like many of you here. Is it necessary to do the 72 hour one for an accurate diagnosis or can one tell from the more simple test. My blood sugar was low (40) and proinsulin high (110).

Thanks!
Peggy

Saturday, 11th August 2007 at 2:13 pm

Hi Kim,

No wonder your new diet caused more extreme symptoms, whole grains, though a slower release of sugar, were never fast enough to keep my sugar from dropping unless I ate a quick sugar with them. And eating more protien always took the place of all the extra carbs I should’ve eaten. I found that I could eat the healthy stuff as long as I eat a continuous supply of quick sugars (usually soy or rice mild helps). Caffeine and alcohol always made me crash though, you’re probably better off without those. Even if the hypos weren’t enough to make you feel crazy, trying to find a diet that works for you would be! I’ve been living with this condition for almost 15 years because they can’t locate the tumor and I’m not brave enough to undergo exploratory surgery. I live in Calif. and the first endo I was assigned to had experience with insulinomas. I don’t know where you live, but seems like if you look up the hospitals in your area, preferably teaching hospitals, they would have something on endocrine tumors, if they were experienced. Good luck with that.
As far as the 72 hour fast, nobody with insulinoma lasts that long. The whole point I think, is to see if your sugar drops low enough while your insulin remains high, which it did. Have you had the CT results read yet. Hopefully if they’re read by the right person, they’ll show something.
Let us know what you find out.

Beth,

Are you home from your surgery yet? I’m so interested to find out what happened. Did the endoscopic US find anything?
And what about the “gray spot” on your pancreas, wasn’t that something? The venous sampling showing that the insulin was coming from all over the pancreas makes it sound like it wasn’t just one tumor. I realize that if that was the case it may have been a bigger deal, but in any case I hope it all went well and you are at home recouperating. Please let us know as soon you can.
Peggy
Angie

Sunday, 12th August 2007 at 11:46 am

Peggy

Have you looked into having the full body calcium infusion yet?

Ive missed a few posts I see - but im still here!!

Susie

I havent been in touch for ages - sorry life seems to have picked up a pace! How are you?
Do you know I still find it really painful to turn over off of my stomach in bed, how are your stomach muscles faring? My drain site scar really itches sometimes.

Other than that no symptoms, no dizzy spells no sweating and no funny sight distortions - I cant believe the difference!

Wishing everyone well…..

Angie
Kim

Tuesday, 14th August 2007 at 5:27 am

Peggy,

Thanks for your thoughts. I had no luck with CT scan and an endoscopic ultrasound. I am going to go to a bigger city NY or Baltimore to look into this further. I’m concerned that the surgeon here would have little experience with insulinoma surgery.

I am so sorry that you have had to deal with this for so long. I don’t know how you do it. I just feel so limited. I have always been very active and now its always in the back of my mind that i might start crashing. I have three kids and for the latter poart of the summer dealing with this - making calls, having tests, recovering from the tests, looking for doctors has been like a full-time job! I feel as though I haven’t really been there for my children and we may have to change vacation plans if I get a green light from the new doc. Ugh! I have a new respect for people with chronic illness - finding the courage and strength to not let it take over your life.
Lauren

Tuesday, 14th August 2007 at 10:52 am

Kim, welcome. You have to agressively pursue this if not for yourself then your kids. I know how hard it is to have low blood sugar while trying to deal with kids. My suggestion to you is to go ahead and insist on the 72 hour test because that is the one test that definitivley tells them you have insulinoma and then they will pursue more invasive tests to locate it. It can be very hard to find doctors, go to a well known endo and they will refer you to a doctor who has experience w/ insulinoma, thats what I had to do. lauren
Laura

Tuesday, 14th August 2007 at 11:23 am

Hello all! I definately know what you mean about life picking up the pace Angie! I am finally back to work after 6 weeks off, but I am definately not 100% yet. I do not have any “incision” pain or itcing, but I get what I call internal pain. I have not discussed it with my surgeon yet as I am hoping it will just go away on its own! I know, not that smart, but oh well. One interesting thing, when I went to have my staples out, I asked about follow up appts etc and my surgeon shook my hand and said, you are cured. No need for any follow up on this ever unless I start having sypmtoms again which is extrememly unlikely. I thought all of you that are getting annual checks would want to hear this, it makes a lot of sense to me. Good luck everyone!
Laura

Tuesday, 14th August 2007 at 11:32 am

Beth, I was so happy to find this website as well, it is amazing when you realize you are not crazy and other people have what you have! Did they find anything in your ultrasound? One thing very important here is these tumors are usually very small and not all diagnostic tests are equal. Ideally you get your test at a big hospital that has experience with pancreatic tumors. As you can read above, there have been many negative tests when there was a tumor present. I had my first MRI at a big hospital in Chicago that found nothing. After a bunch of research, I determined that there was a better hospital in Chicago for what I have, I had my Ultrasound there and they found it. They also found it in a CT scan at the same place. Make sure your hospital is the right hospital!!

Maria, I did not experience any hair loss, but good luck with that. It might jsut be all teh meds causing it!

Kim, I did not have an official 72 hour fast either. If you woke up at 40, that is probably enough. The way they did my fast is I woke at about 50, my husband drove me to the doctor’s office, there I was 40, he waited one hour, I was in the high 30’s and he stopped the test. They jsut want to confirm that you do not get higher on your own. Almost never does a 72 hour fast take that long, I would venture to say, most of the time it is over in a couple of hours. As for finding a doc, I posted a website above with the best ranked hospitals in teh country. Mayo is first, Johns Hopkins is second, and the 3rd is also on the east coast, but I don’t remember the name. I had my surgery at University of Chicago which I would definately recommend. My doc is the cheif of surgery and only does operations on the pancreas. Good luck!
Laura

Tuesday, 14th August 2007 at 11:34 am

Kim, one more thing, you mentioned Baltimore, Doctor Cameron at John’s Hopkins is very experienced wtih insulinomas. I almost went to him myself.
Kim

Tuesday, 14th August 2007 at 2:36 pm

Laura and Lauren, Thanks so much for your comments.

Every one, does anyone know insulinoma surgeons in NYC?
Peggy

Tuesday, 14th August 2007 at 3:14 pm

Angie,

I still have not had the calcium infusion test. I did mention it to my doctor at USC, but she quickly passed it off saying that it was not very accurate. It will be interesting to hear about Beth’s surgey being that the calciunm test showed high insulin all over the pancreas.

It is encouraging hearing that life “picks up the pace” enventually. Oh, I remember long after my kidney surgery that my scar would itch like crazy. There was never anything wrong though.

Kim,

This disease definitely can take over your life, but you’re doing the right thing putting the time and energy into it now. I know how much of a strain it can be for you, but in the long run, you’ll be able to be there for your kids 100 percent. I would have a hard time giving up my vacation plans though. Especially considering how long the recovery time after surgery would be. You shouldn’t have to worry about crashing, if you keep a supply of quick sugar with you at all times, as well as a monitor. The trick is remembering to eat constantly! I check my sugar every two hours at least, whether I feel low or not. Although, no matter where I go on vacation, I have trouble. I don’t know if it is the altitude or the extra energy expended or just the different routine, but I’ve always had to have the paramedics come wake me up.

Since insulinoma is such a hard disease for others to fully understand, it has taught me to have a greater appreciation for people that are going there own illnesses..
Hopefully you’ll be aqble to go to John Hopkins, if anyone can find the problem, they can. Hang in there!

Susan?

How does it feel to be back at work??
Laura

Tuesday, 14th August 2007 at 3:58 pm

Kim, as awful as it sounds, I had a rule before I had surgery that I would never be alone with my 3 young kids. It was awful, but I had a couple of really scary episodes with them and I knew I would never forgive myself if I was to hurt one of them. It is really hard, but you will get thru it!!
Peggy

Tuesday, 14th August 2007 at 4:45 pm

Hey Lise!!

I don’t know how I missed your first post. That was over a month ago, so what have you found out since then? Have you learned anything helpful from your education yet, as far as diets or alternate causes?? I wish I could see a naturopathic doctor, since mine haven’t been able to find the cause yet.

I’m sorry I can’t remember my numbers, for more than a day, but I’m sure I wrote them down somewhere on this blog. All I know is that they thought it high for how low my sugar was.
Post some questions if you’re still out there, people will definitely respond.
Susan

Wednesday, 15th August 2007 at 9:01 pm

I’m 5 weeks post surgery and feel completely normal. I’ve been back to work for 2 weeks and I have to admit, it really did me good. I was tired of laying around at home. I even skipped lunch one day at work. I haven’t been able to do that for a very long time.
My sugars are still a little high, 115-125. If they don’t drop a little bit more I will be making an appointment with the Endo that diagnosed my insulinoma and see what he says. My surgeon told me that occasionally a person becomes diabetic after this surgery. I’m really hoping they drop a little more soon.
Homa

Friday, 31st August 2007 at 11:36 pm

Lauren
I wanted to ask you about MD Anderson. I have been waiting on Mayo for too long. when we contacted MD Anderson, they responded very quickly. I was pretty hesitant at first, not sure if I should go to Mayo. Considering I have gone through a previous surgery last year. I thought the name of that hospital sounded familiar, then I remembered that is where you had your surgery done. They are scheduling me for the end of September to go for testing. They did not mention the 72 hour fasting, but all the other usual tests have to be done all over again. Could you tell me about your experience there? I would appreciate it. Knowing that your surgery went well over there gives me some hope and that I am making the right decision going there. How are you feeling now?

Hi everyone
I wanted to ask you guys a question, I know weight gain is part of insulinoma, but for the last couple of years my weight has been pretty stable until this past christmas, I have gained fifteen pounds since that time. I was wondering, if anyone else has experineced gaining more weight as the eposodes get worse or more frequent. Because my eating habits have not changed at all, if anything I am eating better now. I do not eat as regularely as i should be eating, and still gaining all this weight. I am getting married in December. That is if I do not end up having surgery before then. in that case, I have to postpone the wedding. I think I am the only bride who had to buy a wedding gown a size igger so I would be able to fit into it if I gained weight. Most brides starve themselves to fit into a dress not ask for a bigger size, you should have seen the face of the girl who was helping me in the store, it was pretty funny. For those lucky guys who have had surgery I hope you are doing well, and I hope to be in your club soon, and for those who have not had their surgery, good luck with everything.
Peggy how are you doing?
take care everyone
Homa
Susan

Saturday, 1st September 2007 at 11:52 am

Homa
My insulinoma was removed in July. Over the past 3-4 years my weight fluctuated quite a bit. At one point I had gained 30 pounds. My symptoms had become more severe and frequent in the past year before my surgery. Since the surgery I have lost this extra weight without trying and feel so much better. I’m thinking that if you have your surgery you may need to buy a smaller dress size! My surgery was laparoscopic and the recovery time was very minimal.

I’m hoping you can get your surgery scheduled soon and can still get married in December.

Good luck and keep us posted.
Peggy

Sunday, 2nd September 2007 at 12:53 am

Homa,

I hope you will feel secure in the hands of the doctors at M.D. Anderson. I guess it will all depend on what they find with the tests they perform? Congratulations on your wedding. I hope that everything will go as planned.

Thanks for asking how I am doing. With all the tests they’ve performed, they haven’t been able to find a thing. So they have just increased my medicine which makes me retain water like crazy and swell up like a baloon! My sugars are a bit higher, but now I just feel low at a higher
level. Maybe I’ll get used to it.. I continue to hope for another answer or some new tests to be developed.
Homa

Monday, 3rd September 2007 at 5:48 pm

Susan
I am so glad to hear that you are doing better. It takes a while to get back to being one hundred percent after surgery, but sounds like you are on your way. Thanks for sharing about how quckly you lost the weight after surgery. I know I will lose it once I get done with the surgery, I just hate buying new clothes now, lol. I sure hope I won’t have to buy a new wedding dress, Good luck with recovery and thanks for the well wishes, i will definately keep you guys posted

Peggy
You and I are the veterans in here, Most people come here and get their surgery done and get well. Hopefully we will be there soon. Like you, I have had most of the tests done and they showed nothing. The only one I have not done yet is the calcium infusion. Maybe that will be the one. I just hate the thought of going through all those tests all over again, but I do not have any other choice. I do feel good about MD Anderson. The main thing is the doctors finding the tumor, that is what I worry about. I am hopefull that they will find it though.
What kinds of tests have you done. I remember reading on your earlier post that you have not had the calcium infusion done. It may not exactly pin point the location of tumor but it may show the general area that it is at, which si better than nothing. I hope your body will adjust to the new dozage of your meds and it won’t cause much problem. Thanks for the well wishes, It is a very nice feeling to have you guys, since you know what it is like to go through all this.
good luck
homa
Kim

Tuesday, 4th September 2007 at 7:05 am

Well, here’s a laugh for you guys. I woke up this morning, naked, in my daughter’s bed! Fortunately she is 14 and was spending the usual eons of time getting ready for school in the bathroom. I must have gotten up, taken off my PJ’s and climbed into her bed, all while she was in the bathroom! Let’s not get too Freudian here!! This is the second time I have had early morning wanderings. I suppose I need to set my alarm earlier!
Anyways, I have gotten myself onto Dr. John Cameron’s radar. I’ve gone down to Johns Hopkins for an octreoscan and go back tomorrow to meet with Dr. C. for the first time and find out the results of the scan, maybe have a high octane CT as well since the one here showed nothing.Keeping my fingers crossed that somethiing shows up. I think people are starting to think my antics aren’t so funny anymore! (There are a few you haven’t heard of - maybe we should start a new log!)
Hang in there Homa and Peggy. I think of you everyday - it gives me strength knowing you are out there somewhere but I truly hope you are able to beat this thing soon!
Good luck and best wishes from Kim
Laura

Tuesday, 4th September 2007 at 11:04 am

Homa, I worked with a Dietician before my surgery and it really helped me not to keep gaining weight. She suggested eating no more than 30 carbs at any “meal” and I do use that word lightly, and in addition to eat every 2-3 hours. So in essence you get to eat 6-7 meals per day, but they are all very, very small. It does help your sugar and it is really hard to gain weight when you are eating like that.

Kim, my blackouts were pretty bad as well though I did not have any in the morning like you described. With mine, I would usually have about 5 minutes where I would know something is wrong and then black out. One time, I was in the house with my 3 kids when my husband was outside working on the yard. I had the sense to walk to the front door and tell him I needed help, next thing I knew I was sitting on the floor of my kitchen with a spoon full of peanut butter in my hand. Evidently I had almost backed over a railing holding my baby and the other 2 were crying it was really, really awful. the worst thing about it is that this was not the only episode, there were many many more. In the 2 months before my surgery, I had made a “rule” that I would not be alone with my kids, how crazy is that, but I was petrified of hurting them or allowing them to get hurt while I was blacked out. Surgery is amazing though, my sugar has been great since!

Good luck all! Laura
Laura

Tuesday, 4th September 2007 at 11:04 am

Homa, I worked with a Dietician before my surgery and it really helped me not to keep gaining weight. She suggested eating no more than 30 carbs at any “meal” and I do use that word lightly, and in addition to eat every 2-3 hours. So in essence you get to eat 6-7 meals per day, but they are all very, very small. It does help your sugar and it is really hard to gain weight when you are eating like that.

Kim, my blackouts were pretty bad as well though I did not have any in the morning like you described. With mine, I would usually have about 5 minutes where I would know something is wrong and then black out. One time, I was in the house with my 3 kids when my husband was outside working on the yard. I had the sense to walk to the front door and tell him I needed help, next thing I knew I was sitting on the floor of my kitchen with a spoon full of peanut butter in my hand. Evidently I had almost backed over a railing holding my baby and the other 2 were crying it was really, really awful. the worst thing about it is that this was not the only episode, there were many many more. In the 2 months before my surgery, I had made a “rule” that I would not be alone with my kids, how crazy is that, but I was petrified of hurting them or allowing them to get hurt while I was blacked out. Surgery is amazing though, my sugar has been great since!

Good luck all! Laura
Lauren

Monday, 10th September 2007 at 10:06 am

Homa, I am doing awesome! I would absoultely recommend MDAnderson in Houston. The surgeon I used was Douglas Evans and he was awesome. He has removed a lot of insulinomas. He is specifically a pancreatic surgeon. He said the pancreas is where he “lives”. He is very well respected there, they call him the “wizard”. The care there was wonderful. He had two doctors under him. I was in the hospital 2 weeks and every day Dr Evans himself would visit me at least once and his two doctors would visit me 2x a day as well. When I first went there I met with a endocronologist Naifa Busaidy. She was wonderful. After giving her my story she scheduled me for a spiral CT scan and the 72 hour test. She gave me her mail address and when I got home I would email her and she would always respond, sometimes within 30 min! She called me at home to tell me they found the tumor and she gave my case to Dr. Evans whose secretary called me and scheduled the surgery. I first went to MD Anderson May 5 and my surgery was June 7 so they are very efficient. Dr. Evans gave me his cellphone number he was excellent, my dad loved him and my dad is hard to please. A week after I got home my incision was leaking a lot so I called his cell phone number and he called right back. I am kicking myself that I didn’t get all of this taken care of years ago because its the best thing I ever did! Good luck and let me know if you have anymore questions! Lauren
Kim

Monday, 10th September 2007 at 11:50 am

Hello all,

Well my scan did turn up something but they are not sure if it is insulinoma or an accessory spleen. I go for a liver/spleen scan tomorrow to rule out the accessory spleen.

Just something of interest. They test for proinsulin to rule out someone’s injecting themself with insulin to make their blood sugar drop and get attention. High proinsulin is as good as high insulin when combined with a low blood sgar level points to insulinoma.
Lauren

Monday, 10th September 2007 at 3:49 pm

Kim, that is true when I did my 72 hour test my insulin level was not that high however my proinsulin level was very high, and they explained to me that proinsulin is the precursor to insulin, proinsulin eventually converts to insulin. I had a 1.9 cm insulinoma.
karen

Monday, 10th September 2007 at 6:53 pm

Hello, can you tell me what happens when they do the 72 hour test what happens….how do you go that long without food….and what are they looking for….that is the next thing the doctor wants to do …..thanks karen
Kim

Tuesday, 11th September 2007 at 5:00 am

Hi Karen,

I haven’t done the 72 hour test myself but my understanding is that they have you fast in a supervised setting until your blood sugar drops to a certain level (I think somewhere below 50). The hallmark of insulinoma is a low blood sugar with a high insulin or proinsulin level at the same time so they will look for that.

There are many entries about the 72 hour in this site. It sounds like most if not all of the participants went for less than 8-10 hours before their blood sugar dropped to the required level. So you’ll only be fasting until your blood sugar drops enough.

Anyone else, correct me if I’m wrong.
Laura

Tuesday, 11th September 2007 at 9:29 am

Karen, Kim is totally right. My 72 hour fast lasted less than 2 hours! As for going that long without eating, after my surgery it was almost a week before I could eat, the bonus is you lose weight! The fast is done in the hospital or a doctor’s office and it is very safe and is the most painless of all the tests I had to go thru! good luck!

Laura
Laura

Tuesday, 11th September 2007 at 9:33 am

Karen a couple more details if you want them. Usually you go in first thing in the morning before you eat if there is someone to take you in. When you get in they check your sugar usually via a blood draw and via a portable monitor. Then you wait an hour or so and they check again. Then you wait an hour or so and they check again. If your sugar continues to drop, the test is over. If you read above, I think I even entered in what my numbers were, but I imagine I started below 50 and went down from there.
Lauren

Tuesday, 11th September 2007 at 7:27 pm

I was an exception to the 72 hour test it actually took my sugars 12 hours to drop to below 40. I was astounded and they explained to me that since I’d probably had my insulinoma for about 20 years, my body had gradually adapted to functioning with low sugars. I ate something at 3 in the morning and then went in for the test that morning around 9. My blood sugar was 39 when I got there but that wasn’t low enough so they made me keep testing and my blood sugars actually went up and lingered in the 50’s for hours and hours. After 12 hours they finally plummetted. My insulin levels were not that high but my proinsuin levels were very high. You never know how your body is going to react.
Kim

Sunday, 23rd September 2007 at 11:03 am

They found that my spleen is normal so that what they are seeing on the CT scan is most likely the insulinoma so, I am scheduled for surgery on the 27th! Does anyone want to share their pre-op experience? I am wondering what it will be like to be on a ‘clear” diet for 24 hours beforehand. Will i constantly need to be drinking juice etc. to keep my blood sugar level up?
Laura

Monday, 24th September 2007 at 9:05 am

Kim, well at least you have a diagnosis! That is good news at least. As for the clear diet, my pre-op paperwork said the same thing. I called my surgeon very concerned about how to keep my sugar up on a clear diet. I know most of the people on this website were admitted to the hospital and did their clear diet while on a glucose IV. My surgeon did it differently, he said I could eat whatever I wanted to until 6pm the night before surgery. Then from 6pm-12 I had to do clear, then nothing after midnight except glucose gel. I ate 2 packets of gel going to the hospital and in the pre-op waiting room and when they called us into pre-op, my sugar was 36. It is really, really hard to keep your sugar up without eating “real” food. I would definately have this conversation with your surgeon.
Laura

Monday, 24th September 2007 at 9:07 am

Kim, one more thing, you need to make your surgeon understand how serious you are about this. Most people in the medical field really blow off hypo-glycemia even the surgeon who is going to do your operation to cure you! When you get to the hospital, you need to make sure the person who goes with you is very vocal and can get you the sugar you need. They never believe how low you go until they do a test themselves! Good luck!
Lauren

Monday, 24th September 2007 at 10:41 am

Kim, I second what Laura just said that is SOOO true! I don’t care where you go they never believe that your sugar will drop that low and once it does you can’t explain or demand anything because you are spaced out. Years ago my husband almost punched out the nursing staff when I went in for a simple D&C and of course you have to fast and they would not listen when he kept telling them to test my blood sugar andit got so low I blacked out. Most hospital staff are completely cluless when it comes to hypoglycemia.
Susan

Monday, 24th September 2007 at 5:28 pm

Laura is so right. When I checked into the hospital for my 72 hour fast even my Endocrinologist thought I’d still be there the next day. I told him I wouldn’t last much past lunch the first day but he laughed at me.
Sure enough just 4-5 hours after I checked in on was on my way home. Most of the nurses were completely clueless about what was going to happen. My blood sugar dropped to 37 during my stay.
Homa

Friday, 28th September 2007 at 8:56 pm

Lauren
Thanks so much for reassuring me about how good MD Anderson is. I went there this week and was so impressed by it all. The clinic, the doctors and the staff were super nice. I got bunch of tests done. I did not have to do the 72 hour fast thank heavens. I did the Octreotide scan which I had never done before. Did my fifth CT. I am just praying that the imaging that they did would shoe the tumor. My doctor’s name is Dr. Perrier. she is very nice. The endo’s name is Dr. Shah. Dr. Perrier said that if the tests that we had done doen’t show the tumor, I got to go back for more testing. Probalby the Calcium fusion test. Wish me luck

Hi Everyone
I wanted to ask, has anyone done the Octreotide scan and has it been successfull? It seems like my episodes are becoming more frequent and I am continiously gaining weight. no matter what I eat. Last week was the anniversary of my first surgery and all i got left of it is a incisional hernia. I know that they can operate on it when they go in for the insulinoma.
I know what you guys are saying about being stressed out when they tell us to fast. I was told that I needed to fast Monday morning when I went to MD Anderson. well we got there and at around eight theirty while I was waiting for preregistration, my brother went and told them that I really needed to eat soon. they checked and told me that I could go ahead and eat something and did not need to fast for the blood work. I drank a small bottle of apple juice and a pack of 100 calory snack. They did the blood work half an hour later. The next day i found out from my Endo that my sugar was 35. This was after the apple juice. and the thing is that I was not symptomatic at all. I would have hated to see how low it would have been if I had not drank the apple juice. I had an episode this morning and my sugar was 35 at the time. I do not know why sometimes I can have an episode when it is that low and sometimes I do not.
I would say this about MD Anderson. Anytime we mentioned that I had to eat otherwise my sugar would drop really low, they took us really serously. Which is something I have not seen in any other place.
Kim
Good luck with your surgery and I am sure everythng would go great. Keep us posted.
Angie

Saturday, 29th September 2007 at 1:29 am

Hi Everyone!
Ive been keeping up with all the post - although I have missed a few!

I do think that if your hospital does not understand about the blood sugar levels you are in the wrong place!

Ive copied some of this from a previous post but it may help although this is the UK and they do things slightly differently!

When I went in for my 72 hour fast I went in the night before and ate a meal at 5pm and started fasting at 6pm. This was because they did not want me to be going hypo on the way in, this could be especially worrying for you if you have to report to the hospital in the morning without eating breakfast.

We use a different scale. Ive been trying to work out all the levels everyone quotes. (0.6 mmol/L = 10 mg/dL - ie 1.8 mmol/L = 30 mg/dL) Are you impressed!!!!!

My endocrinology tests came back as 2.5 which roughly 40. Anything lower than 50 is considered unusual and below 30 is serious. In the Uk if you go below 1 you are probably in a coma! which would be less than 20.

When I had my 72 hr test they stopped it at 1.6 which would be 26 ish but I went in at 36 which was low anyway. I had to have two readings below 2. (These figures are approximate!) This was 30 hours into the test in the middle of the night.

When I went in my sugars had been 2.2 or 36 all weekend and they didnt believe me - I thought id be out in 6 but the following morning the levels were 4.5 - they had gone up! It threw everyone into confusion, as it happened they came down quickly during the next 6 hours. What had happened is my liver had kicked in and produced glycogens that temporarily raise your blood sugar - this is the body’s defence to save your life!

I ended up dreaming about biscuits after 24 hrs it was really odd as I kept having to remember I couldnt have anything! Lucky the NHS food isnt that good as I actually didnt feel I was missing out!!

We think that because I had had this condition for so long my body operated on a very low blood sugar all the time and I was used to it.

I could have an episode on 3.5 but at other times I could be fine on 2.5 so nothing really was consistent. One day I felt faint tested my blood and I was 1.6 - that really freaked me out!

I never really had blackouts but I ‘lost time’ one morning - it was very near to my upcoming surgery so I think if I had gone much longer I may have experienced more serious symptoms!

Before my surgery I fasted from 12 midniight and my op was 12 midday. They wanted to put me on a drip over night but I couldnt see why when I wouldnt eat overnight anyway! I ended up on an Iv at 4 in the morning anyway for fluids!

St Barts in London is the best place in the UK to deal with this all the nurses are trained and know exactly what to do with a hypo situation. Helen (as above) went to a more local hospital first and they didnt have a clue what was happening! In general people do not consider a drop in blood sugar to be so serious - I didnt until I fully understood what could happen to me and Ive been luckier than most people on here who have had blackouts. I read with horror about blacking out while with the kids but you have to carry on living as normally as possible.

We went to Goa, India, in August - I had trouble with upset stomach for most of the two weeks and didnt eat much! I certainly could not have survived if I had not had my op! In fact it really made me think! I have more trouble with my digestion now which Im sure is due to the loss of my gall bladder but it is a worthwhile sacrifice to feel as normal as I do! (malaria tablets dont help either)

Peggy, Homa, glad to see you are still fighting - The calcium infusion test would divulge more accurate results than not having it! Especially as they are having trouble finding anything!!

Sorry this is a bit long!

All the best, I am thinking of you all!

Angie
Steve

Saturday, 29th September 2007 at 1:38 pm

Hey guys, its been a while since i posted. Just got an update and wondered if anyone here has a similar Diagnosis. Looks as if i have M.E.N 1 associated with the Insulinoma. my calcium levels are high and they think that i have Hyperparathyroid, and that if so, then the diagnosis culd be the MEN1. anyone else have this? Thanks! hope all are doing well! sorry its been so long since checking in.

Steve
Susan

Tuesday, 2nd October 2007 at 12:07 am

I’ve been reading all these posts regularly but haven’t posted myself for a few months. My mother who is 82 is now at Stanford Hospital undergoing the 72 hour fast and has been lingering at sugar level of around 40 for about 4 or 5 hours so far. We’re surprised it hasn’t gone lower. Her CT and MRI didn’t reveal anything. She is scheduled to have a calcium angiogram after the fast to try to locate the tumor.

I can’t tell you how wonderful it has been to hear of all your experiences. I will share more of ours as they happen.

Susan N.
Lauren

Tuesday, 2nd October 2007 at 10:48 am

Homa, that is great you are in the right place. Good luck and keep me posted!

Susan, don’t be surprised by her sugar levels. The body has a way of kicking in reserves for survival. Like I posted before my blood sugar hung arond 50-55 for like 10 hours or something like that I can’t remember exactly and I was told by my surgeon that my insulinoma was one of the bigger ones-1.9 cm.
Lauren
Susan

Tuesday, 2nd October 2007 at 3:32 pm

You’re right, Lauren. Her level even went up to 53 for a short time, only to plummet to 20. They took their final reading at that level and then gave her glucose. Tomorrow she will have the calcium angiogram to hopefully narrow down the location of the tumor. The results of that will be back in several days and hopefully she can have the operation next week. We are blessed to have Dr. Norton as her surgeon. I found out about him through this web site!

Susan N.
Kim

Sunday, 7th October 2007 at 9:09 am

Hi everyone,

I am back home after surgery on the 27th - feeling well and relieved that it is over and that all went well. Johns Hopkins was truly wonderful. I felt every step of the way that I was in good hands. I spent 5 days in the hospital, then went to a local hotel for three, then home. My insulinoma was about 1.3 and was “hanging off” the tail so my pancreas is intact luckily. Even though they didn’t show up on the liver/spleen scan, I did have two accesory spleens and those are gone now too (not sure why they take them out).

The day before surgery they made me stick to the clear diet after noon. I got up every hour in the night and drank a cup or so of Jell-O. That did the trick but I can tell you I was very anxious and we had all kinds of Plans B!

Homa: I had an octreotide scan done at JH and it showed nothing but then again even the 3D CT scan they thought they saw something on was very iffy.

It is such a great feeling to not have to worry about my blood sugar anymore. I wake up in the morning like a normal human being. I am barely eating anything (that will change!) and my blood sugar is fine! What a very strange affliction we (have) found ourselves with!

Good luck to everyone. If you are battling an insulinoma now, I hope you find a solution soon. I’ll keep checking in to see if I can be of any help to anyone.

Best wishes!

Kim
Elizabeth

Tuesday, 9th October 2007 at 7:58 pm

Hi everyone! Newbie here! I stumbled along this website because I was looking for info on Isulinomas. I am currently undergoing tests to see if I have one. My Insulin levels are at 220 fasting, and my Endocrinologist is thinking that is being caused by an Insulinoma. For the past several years I have been suffering from what he thinks are the effects of Insulinoma. I am HUGE! In six months I went from 165lbs to 200lbs. All my weight is in the abdomen. The rest of me is fairly small. I put on at least two pounds a day and I hardly eat anything; one small meal a day!
I am constantly tired; unable to sleep at night. (I sleep roughly two hours a night), am confused and dizzy all the time; I have crippling headaches that are not stopped by any type of painkiller, blurred vision, and thirst. But what IS unusual about all this, is that I am also HYPERglycemic! My blood sugar ranges around 140-250. My doctor told me that a colleague of his who recently passed away had 1 documented case like me in the 60 years he practiced that turned out to be an Insulinoma. Other than that, I’m a complete mystery.
Anyone else heard of someone like me or had my symptoms?
Peggy

Wednesday, 10th October 2007 at 10:03 pm

Kim,

Congratulations, I’m happy to hear that your surgery went well and that this is all behind you now. It gives me hope every time someone is cured of this crazy disease. Hopefully your recovery time will go by quickly and as painlessly as possible. I’m sure your family is relieved to have you home and back to your normal self.
One day I woke up in the hospital with my daughters bed sheet wrapped around me. The paramedics just grabbed the sheet with me in it for transport. I guess i had done the same thing as you and crawled into her bed. She is 15. Someday I hope to have this all behind us too.

Hi Elizabeth,

Wow, I thought I was the unusual one. High insulin and still high sugars, what a bummer! I haven’t heard of anyone with that problem. Is there any diabetes in your family? I always assumed that some diabetics could have high insulin levels because their insulin just doesn’t work?? So does he have you on proglycem to stop insulin production yet? I hope you find an answer soon!

Susan,

Was your mom able to have the surgery? I’m interested in finding out how the calcium angiogram went. I hope they were able to find what they were looking for and that your mom is doing o.k. Please keep us posted.

Steve,

M.E.N. 1? I think you get the prize. I don’t remember there being anyone else on this sight with that diagnosis. My mom’s doctor thought that is what I may have, since she also has pancreatic problems as well as kidney and I’ve been manufacturing kidney stones like crazy since I was 12. It’s hard to get a doctor to offer genetic testing, or whatever it is they do for that. So what’s next for you?

Homa,

Did their tests find anything??

I get a little discouraged at times and that’s why I haven’t posted in a while, but I still am thinking of everyone who has had to go through this, and I am thankful to be able to share our stories.
Richard

Thursday, 11th October 2007 at 1:58 pm

Wow….. what a fab site this is.
I’ve just been diagnosed as having a suspected insulinoma in the head of my pancreas and up until today I’ve felt that I’m a freak with something that nobody else has heard of let alone been cured of.
Looking at some of the responses on here I guess my journey is a fairly short one.
I first knew something was wrong in about November 2006 when I was in a meeting and made a 5 second sentence last about 5 minutes. Everytime I started talking I lost track of what it was. After the meeting I had some food and felt so much better. Dismissed it as a one off but the attacks kept happening.
This year I lost my driving licence due to a seizure and after a second one two weeks later I was told I was epileptic by our beloved NHS in the UK, sent away with some pills and told to come back in 7 months time.
Not convinced I used my private medical cover and sought a second opinion in March of 2007.
My private consultants informed me that my blood pressure was too high and that there was a problem with my blood glucose levels. Both of which may have caused the seizures.
In August this year I had a kidney removed which was causing my high blood pressure (now cured of). They also gave me an MRI of my pancreas, to investigate a possible reason into why my insulin levels are so high. As well as numerous blood tests.
I’m now waiting to see a consultant at Kings College Hospital in London later this month.
The only things that bother me are, how long is the operation if it’s open/keyhole and what is the recovery time?
Angie

Friday, 12th October 2007 at 1:14 am

Richard

Hi to you as probably only our third or fourth Uk resident!!!

If you can be bothered all my posts have all the info you could need but there are so many now you may get bored looking! However if you have any particular questions or if I can offer any help please feel free!

I was under Barts then the Royal London and they were brilliant!

I cant write much now but post back and I reply!

Good Luck

Angie
Lauren

Friday, 12th October 2007 at 9:01 am

Richard, mine was in the head of my pancreas and they did about an 8 inch incision straight down the middle of my stomach. Recovery time was about a month, full recovery, back to work, excercising, etc. was 6 weeks.
Kim

Friday, 12th October 2007 at 10:28 am

Richard,

Welcome. I just had surgery on September 27th. The insulinoma was on the tail. My incision is vertical, about 7 inches. The hospital got me up and moving around ASAP - sitting up, walking. I think that really helped move things along. By the end of my hospital stay (5 days) I was even able to sleep on my side. I had an on demand button for pain meds, then was switched to percoset the day before i left the hospital. Percoset made me feel terrible. Spreading out the dosage helped a bit but I kicked them after 2 -3 days and just took aspirin. By then the pain was not as bad. 2 weeks after surgery I went on a small hike up a mountain near where I live. I think it really helps to have strong stomach muscles going in. The better shape you’re in, the faster you’ll recover, of course that’s barring any complications like infections etc. I still get tired easily and have not been very hungry so I have lost soe weight (that will change!). Best wishes to you!
Kim

Friday, 12th October 2007 at 10:30 am

Peggy,

Thank you for your kind thoughts. I thiink of you often and pray that you will find an answer soon. In the meantime I send you strength and best wishes.
Elizabeth

Saturday, 13th October 2007 at 4:07 pm

Hi Kim,
Ironically, there is no diabetes in either my father or mother’s family. There’s not even any obesity, yet I’m way over my recommended weight. As of now, I am not taking anything for my hyperisulinism. My Dr. didn’t give me anything for it, although with a number like that, I think I should be. ::shrugs:: I see him on Wednesday. He wanted me to have the imaging tests done before I saw him again, but my insurance is being difficult and still hasn’t authorized them yet. (it’s just fight, fight, fight with them.)
I had more blood tests performed, to see my insulin and C-Peptide levels. Hopefully they can shed some more light on what’s wrong with me.
Homa

Sunday, 14th October 2007 at 4:57 pm

Peggy
well, I finally heard back from MD Anderson. My doctor was not comfortable treating me so she send me to someone else with more experience in this area, which I do appreciate. The good news is that they finally did see SOMETHING, or I should say several things. i am not exactly sure what they found, but they send a fax to my brother who is supposed to be the reffering doctor and he will get a copy of all the important information. It just said that they found four or five nauguals or something. We just have to eait now to see what this new doctor wants to do. thanks for thnking of me, and I will keep you posted. If anyone knows how frustrating this waiting game is, it is me. I am hoping and praying that you hear some good news soon.
wishing you the best

Kim
I am so glad to hear that your surgery went well. wow, you went hiking after one month, that is very impressive. After my first surgery, I was just able to leave the house after a month, I could not walk much, i would huff and puff after ten minutes. I was in a lot of pain. of course I had a very extensive surgery, You are right though, being in good shape and walking after surgery helps a lot. i am praying that my recovery time would be shorter when i have my next surgery. Good luck with recovery

Lauren
I have been referred to Dr. Evens, I think he is the same doctor that did your surgery. They said that he is an expert in pancreatic tumors. I feel really good that he just did your surgery. I got a good feeling about it. i just hope they get back in touch with me soon to let me know what is the next step. I think he wants to do more testing. I probably need to go back just to see him. He wants to do the endoscopy. My brother let them know that we had done that, but we shall see. I will keep you posted.

Godo luck to everyone
Homa
Kim

Sunday, 14th October 2007 at 5:16 pm

Homa, I’m sure your first surgery was much more extensive than mine! I know what you mean about waiting. Even though I think things went pretty quickly after I was diagnosed, every step seemed like an eternity! It sounds like you are heading into good hands. One thing about endocopies, they are not all the same. I had one at my smaller hospital up here but they said at Johns Hopkins that they would probably have had better luck there - just that the doctor would be much more experienced etc. etc. Good luck and do keep us posted. Thinking of you and everyone else. Kim
Angelique

Monday, 15th October 2007 at 3:24 pm

Wow! I can’t believe I have found such a site. I went through hell with my insulinoma and had surgery in Cordoba - Spain 4 years ago. i am from Gibraltar and spent 3 years back and forth from St Mary’s in London and Hammersmith Hospital with little answers. Surgery was a godsend and I now love my new quality of life. I would love to help all those who are going through hell with their insulinoma symptoms and poor quality of life. Investigations prior to surgery really drag and I always felt far from human. xxx Angelique xxx
Lauren

Monday, 15th October 2007 at 4:05 pm

HOMA: That is WONDERFUL news I’m so glad you got Dr. Evans! They call him the wizard over there. He is very efficient. Even my dad loved him and my dad is hard to please. He is very experienced in the pancreas, he said thats where he lives and he has done many insulinoma surgeries. He has a team of two doctors under him and I was visited by all three at least two times a day during my recovery. Tell him I said hi! You have nothing to worry about, let me know how it goes!! Lauren
Angelique

Tuesday, 16th October 2007 at 10:54 am

Elizabeth,
The symptoms you describe do not make sense to me. If I were you, I would persist to be properly investigated, even if it means going through some hell. I went through hell and back cos different doctors came up with different results. There are a lot of tests to be done to determine a possible insulinoma. One of them is a three day fast. Your sugars are supposed to drop pretty low less than 2.2mmols or below 50dll. I never experienced hyperglycaemia except after a lot of I.V glucose. Where do you come from? Are you American or British? I don’t think Proglicem (diazoxide) is the answer - it could make your sugars go higher. Hyperglycaemia needs insulin treatment. An insulinoma is a tumor that produces insulin - your diagnosis does not make sense to me. Please have yourself checked out properly. You really are a mystery. xxxAngeliquexxx
Elizabeth

Tuesday, 16th October 2007 at 7:42 pm

Hi Angelique,
I’m an American with British (English/Scottish/Irish) descent. I AM weird, aren’t I, lol? Like I said, my Dr’s colleague saw only one documented case that was like me. She was my exact age and had an Insulinoma. It’s weird because I hardly eat at all; maybe one meal a day or so. I also have terrible tachycardia (184 beats resting) and suffered from Fibromyalgia for the last thirteen years. I have no idea why I’m hyperglycemic. It first appeared six months ago when my Insulin levels were elevated for the first time ever. It has gotten higher with each test, until the levels freaked my Endocrinologist out the last time he saw me. He said it would make sense if I was taking Insulin and Anti-Insulin Antibodies appeared, but I don’t and never have. Heh! I’m such a FREAK, lol! XD
Susan

Thursday, 18th October 2007 at 11:03 pm

I have some more news regarding my mother. The calcium angiogram seems to indicate the tumor is in the uncinate process. That is near the head of the pancreas, I think, which, from what I’ve read, makes it more difficult to remove. At least they know approximately where it is, which is helpful. My mother got a cold and a bad cough, though, so surgery needs to be postponed a couple of weeks. She has gone back to her home in Colorado and will return in the beginning of November for surgery. At one time she was afraid of having surgery, but now she just can’t wait to have it over and done with. We are glad there is hope.
Angelique

Friday, 19th October 2007 at 8:40 am

Hi Susan,
Where is your mum having her surgery?
My insulinoma was never located until they opened me up and there it was sitting between the head and neck of the pancreas. They managed to do a distal pancreatectomy by removing the pancreas from part of the head down and also removing the spleen therefore preserving part of the head. My recovery was a little slow though I was only in hospital ten days post operative. Today, I still produce my own insulin and the only medication I need are enzymes in the form of Creon. I do really hope everything goes well and please keep in touch.
Susan

Friday, 19th October 2007 at 4:14 pm

Angelique, thank you for your kind wishes. I’m glad they located your tumor and you are doing so well. My mom will have her surgery at Stanford University Hospital in California. Her surgeon is Dr. Jeffrey Norton. He invented the calcium angiogram for locating hard to find tumors. We hope this works for my mom, and that at 82 she can handle such major surgery. She has two more weeks of battling low blood sugar levels before the scheduled surgery. We pray all goes well!!

Susan
Homa

Friday, 26th October 2007 at 11:19 pm

Hi everyone
I just wanted to give you guys an update on what is going on with my insulinoma. they finally found SOMETHING. well actualy several things. They found about five tumors. i am guessing they are tumors, all over my pancreas. Some on the head, some on the body and some on the tail of the pancreas. When i heard the news that they had found somethng I had tears in my eyes from being so happy then i started being worried about having so many of them. I do not think it is MEN 1. I do not have anybody in my family with it. Last time I was at MD Anderson I met with a genetic counselor who asked me a bunch of questions and ruled it out. we may do the test for it any ways. If I have it then it is a rare version of it. Nothing is simple with me I tell you. The interesting part is that they found the tumors through CT. I had about four other CT done in the last four years and none of them showed anything. The last one was three month a go when i had a spiral CT done. Maybe the tumor has grown, but it goes to show you how important it is to go to a place with a lot of experience in tumors. I am going to MD Anderson from October 31st to November 2nd to do some testing. They want to do an endoscopy and do a biopsy if they can. i think they are going to do a biopsy of my liver. I do not know exactly all the tests that they are going to do, all i know is that I will get a bunch of tests done and meet several doctors. I hope after all this they can schedule surgery. I am sure ready for it.

Lauren
I am meeting with doctor Evens on the 31st. he is the one that has ordered all the tests that I am going to get done. I just hate not knowing what all I am going to get done. How many times did you go to MD Anderson before your surgery? I will definately tell him that you said hi. Wish me luck
Best wishes to everyone
Homa
Elizabeth

Saturday, 27th October 2007 at 11:39 pm

Homa,
Hope everything goes well for you! I’m getting tests done on the 31st, too. I’m having an Abdominal CT w/contrast and an Abdominal Ultrasound.
Good luck and I’m rooting for you!
Penny

Sunday, 28th October 2007 at 3:38 pm

Homa,
wow…that seems crazy-5 tumors? it must be a relief that they actually finally found something though! i will be praying for some good answers to come out of all the tests ahead for you. Keep going at it one step at a time!
Penny
Susan

Monday, 29th October 2007 at 11:34 pm

Kim,

Did they not put you on a glucose IV the night before surgery? Would that have been easier than having to drink jello every hour throughout the night?

Susan
Homa

Tuesday, 30th October 2007 at 7:57 am

Elizabeth
Good luck with your tests tomorrow. i will be thinking of you. Hopefully holloween would be a lucky day for the two of us ha, smile. keep me posted. and thanks for the kind words
Good luck

Penny
Thanks for the words of encouragement. It is odd that they found more than one tumor. I am just worried about having MEN 1. I guess I just have to wait and see, As you said it, take it one day at a time. I just have been through so much. I know everyone has. With going through one failed surgery last year, I guess I am tired of getting poked and probed. Everytime you do anything, you have to fast. which is stressful. I do not mean to complain. I am thankful to be in the right place funally and to have a great doctor. I am also so thankful to have all of you guys. It means a lot to have people around who understand what you are going through. It means a lot
Good luck to everyone
Homa
Laura

Tuesday, 30th October 2007 at 8:48 am

Susan, what I have found is getting a glucose IV is not your choice, your doctor has to order it. Mine would not, but he did adjust my diet so I had to fast for less time. I think it is dangerous, but no more dangerous than all those months I did not even know what I had and went driving off to work by myself with no breakfast….
Laura
Kim

Tuesday, 30th October 2007 at 1:27 pm

Hello everyone!

Susan: I was not scheduled to stay in the hospital so an IV glucose was not an option. However, I was prepared to go to the emergency room if it was necessary. Perhaps not the best arrangement and I was tired and sick of jello, but it worked. Would have preferred to do it differently but my surgeon called the shots.

Homa: When I had my post-op meeting with my surgeon’s PA she showed me my CT scan for the first time. I found out that they were not 100% certain that what they were seeing was an insulinoma. Indeed, the “spot” was not remarkably distinguishable from other areas in that several other areas had the same shade of gray. Perhaps they are seeing 5 possible insulinomas on you rather than 5 definitive insulinomas. Just a thought if you understand what I am trying to say.
Lauren

Thursday, 1st November 2007 at 5:45 pm

Homa: That is wonderful I’m so happy for you, let us know what happens! To answer your question, I went to MD Anderson for testing in May for a few days and then went back in June for my surgery. I did not actually meet Dr Evans until 2 days before my surgery. Good luck! Lauren
NS

Friday, 2nd November 2007 at 11:03 am

If petscan is clear, is there still a possibility of insulinoma?
Lauren

Monday, 5th November 2007 at 12:35 pm

How special are we? This is funny-I have a friend in medical school and the professor started talking about insulinomas and actually told the class, which was sizeable, that none of them would ever see an insulinoma in their careers because they are so rare! Lauren
Angie

Monday, 5th November 2007 at 1:53 pm

Lauren

Have they been told about this site ? They would be over the moon!

Best wishes everyone!!
Angie
Susan

Monday, 5th November 2007 at 5:38 pm

Well, there were a bunch of people at Stanford University Hospital who just saw an insulinoma from my mother today. It was in the distal pancreus. They removed the distal end of the pancreus and the spleen. We are so glad it is gone now. It is amazing that something so tiny can wreak such havoc on one’s health and lifestyle!

She spent the night at the hospital with a dextrose IV, and still her blood sugar level didn’t go above 49. They put her on the highest concentration possible during surgery and it did come up somewhat. After surgery, it went up to 145 with no IV and nothing eaten for over 12 hours!

I got the idea from this site to request an epidural for the surgery. It worked like a charm and she will be on it for a few more days. She was very groggy this afternoon, but said she had no pain. We’ll go back to see her tonight. I can’t tell you how wonderful it has been to read all the reports from insulinoma patients on this site. Thank you for taking your time to be so helpful. It makes a difference!

Susan
Susan

Monday, 5th November 2007 at 9:18 pm

I misspelled the word “pancreas”. How scandalous is that?

Susan
Homa

Monday, 5th November 2007 at 10:13 pm

Hi Every one
I went to MD Anderson last week. It was quiet an ordeal. I met with my surgon who is very nice. I saw the CT of my abdamon that showed three little tumor looking things. two on the head and one on the neck of the pancreas. I had an endoscopy done on Thursday which turned out to be a bigger deal than they expected. I had problem with breathing so they had to put me to sleep. a 45 minute procedure took about four hours. They were able to take a biopsy of one of the tumors. I got the good news today that it was insulinoma. It made my day. now we are concerned about the other two tumors or whatever they are. I was supposed to have the calcium fusion test done on Friday and the 72 hour fast and bunch of other tests done on Saturday. After all the complications we had on Thursday, my brother told them that there was no way I could go through another procedure. They agreed and so we came back home on Friday. The first day I got there, I was suppsoed to go for blood work fasting, and I ended up having a major episode. My endoscopy was supposed to be at 11: 00 AM on Thursday, we told them that there was no way i could go that long without eating. They were very nice and accomidating. We got there at 6:30 Am and they put me on the sugar IV. The doctor that did the endoscopy was amazed and surprised. he said that during the procedure my sugar would go from 84 to 52 so quckly. I have been so happy getting a good news that they have found an afirmative insulinoma, now I am worried about having MEN 1. I am going to get the test done for MEN 1 this week. I just pray to God that I don’t have it. I am just busy recoperating from the endoscopy. i have been so sour and uncomfortable, but i am getting better though.

Elizabeth
How did your CT go. I hope you got some good news. Keep us posted.

Lauren
Dr. Evens is very nice. I just hate it that I have to go one more time for more testing. Did you do the Calcium fusion test? They never did the 72 hour fasting test with me. he wants to do it so that no stone would be left unturned. At this point it is kind of crazy to do it though, since the biopsy came back positive for isnulinoma. But I will do whatever it si they want me to do to get this done.

Susan
That is great to hear that your mom is doing well and they were able to remove the insulinoma. you are right about how something so small can cause so much problems.
As for the earlier comments about how rare insulinoma is. My doctor’s nurse was saying that recently they have had a lot of insulinoma cases coming their way. She said that my doctor has had about seven of them recently that have been referred to him. That is a lot, when you consider how rare insulinoma is.

good luck to everyone
Homa
Wendy

Tuesday, 6th November 2007 at 5:43 am

Hi there everyone,
I have been following this site for over a couple of months. Just to say I have been diagnosed with insulinoma and am based in London. Have been through all the diagnostic testing at the Hammersmith Hospital and so far they believe that it is in the tail of the pancrease near the spleen.
The problem I have is that they are saying that the diagnostic testing is inconclusive even though the venous sampling and endoscopic ultrasound both concur it is in the tail and they would like me to undergo more testing. I have been booked in for an ocrtreoscan and an MRI scan. I am failing to see how the less invasive tests are going to throw up more than the venous tests and Endoscpic Ultrasound and feel they are clutching at straws a bit whilst delaying everything which is a bit annoying. They are 100% of the diagnosis.
Sorry to moan but has anyone else had and Octreoscan or MRI scan and had any positiive results from this.
Kim

Tuesday, 6th November 2007 at 6:11 am

Homa: I really don’t understand that you are doing the 72 hr. test if they are sure you have an insulinoma! I know what you mean about the testing - its exhausting and stressful. You’re getting very close though! When I had my second CT scan, one doc thought the “spot” was an insulinoma, one doc said no and one said its an insulinoma or an accesssory spleen which is spleen tissue that shows up in strange places. I had a liver/spleen scan which showed no accesory spleen, i.e. the spot was an iinsulinoma. Well it turned out in surgery that I had both! Two accessory spleens as a matter of fact!

Susan: So happy to hear about your Mom. Her life will be much improved now.

Everyone: I wonder if there are many cases of undiagnosed insulinoma out there. The other day I was going in for a mammogram and the tech asked me anout my scar. I told her about my insulinoma journey and she said that sounded like her - sje had to eat all the time, gained a bunch of weight, had an accident while driving one time. I told her to go to an endocrinologist and get checked again (the last time it was looked into was many years ago). I don’t believe someone should have blood sugar problems like that for no reason.
Aileen

Tuesday, 6th November 2007 at 6:41 am

hey all…
it has been a while since i’ve written (i think the last time was in june). i’ve been in south america since then, doing field work, so it has been challenging to stay in touch. i just thought it was great to read how everyone was doing, and it’s nice to see that some of you who were involved with this site when i first found it are still here! I haven’t had the chance yet to read through the comments of newer members, but i look forward to being able to communicate with you all in the future.

I am doing well…no reoccurence of the insulinoma as far as i can tell. any time i think i may be getting low, i check my sugar, and it always turns out normal…i guess it will take a while to break old habits. but i was back in the field a couple of months after the surgery, and i have gone back to my pre-insulinoma weight, thankfully. it seems like it all happened such a long time ago, but the reality is that i am experiencing a normal life for the first time in a couple of years! how crazy is that? so, i am trying to remind myself, when other things seem like they are so overwhelming, to think how lucky i am to be here in a healthy state.

Homa,

I will be thinking about you as you go for the test this week…please let us know how it goes. Have you found out any specifics for the treatment of MEN-1?

And, has anyone else had more conversations with their physicians about how insulinoma occurs? it seems like with so many more of us being treated, that the medical community would be gathering some data on this!
Angie

Tuesday, 6th November 2007 at 10:30 am

Aileen

Ive just read your post about checking your blood sugar - Im the same! I have felt very tired recently - I think its the running around like a mad thing- but when Ive checked my sugars they are a good healthy level! I think it is ‘old habits’ as you say!

Kim

Dont you find that you come across various people who say “oh that sounds like me!” I did! (I actually found it quite insulting at times!) I have a friend who always has something wrong with her and was quite put out when she realised I had something very serious!

I spoke to my doctor about how rare an insulinoma was why did she go for that diagnosis. she told me it was my extensive history and symptoms that all added together. She says she sends loads of people for blood tests every day for one reason or another but it is very very rare that the same histories come along. On the other hand I wasnt diagnosed until last year and they suspect i have had it for 10 years! But then I didnt know there was anything seriously wrong just that things were a bit odd - until the symptoms escalated anyway!

I was lucky my doctor picked it up quickly but there are cases on here that people have been turned away and told there is nothing wrong with them - sometimes it really pays to be a bit of a hypochondriac or at least strong enough to keep fighting for some kind of diagnosis!

The difference is fantastic and I really know what Aileen means when she says she reminds herself how lucky she is!

Homa

Thank goodness you are getting somewhere! Good Luck!

Angie
Lauren

Tuesday, 6th November 2007 at 8:41 pm

Homa, I’m so glad you are getting somewhere. I don’t understand why they want you to do the 72 hour test that makes no sense. Its a pain in the ass I’d question them more on that one if I was you. I didn’t have a calcium infusion test. I only did the 72 hour and then the CT scan. Isn’t that amazing all that they found in you after all you’ve been through??

Kim, I am convinced there are many people out there with low blood sugars that have insulinomas, maybe a lot smaller than normal but it is such a freaking milestone to get an insulinoma diagnosis I think many people will go untreated.
Angie

Wednesday, 7th November 2007 at 2:11 am

Wendy

Hi Ive just found your post, its come through after all the other recent ones….

I was treated at Barts and the Royal London. They seem to do things a bit differently over here!

I dont know what an Octreoscan is! I had the 72 hr fast, CT and MRI, a calcium infusion test and then an endoscopy. They prefer to go into surgery with every test result they can. Even with the results they will tell you that nothing can be 100% until they open you up.

They go on about the pancreas being a very delicate organ and how it is very tricky if it is damaged as the pancreatic fluid is corrosive to other organs. I was told I may have had to have a “whipple” as my tumor was in the head near sevral important ducts. I was glad to have every test they suggested to find out how close it was and hope they would say it would be ok after all! Luckily I was!

Each test tells them something different. Dont be frustrated with having more tests think how lucky we are the NHS will do them unlike the guys in the US who have to fight for every test to be done.

Have you done a 72 hr fast?

Who is your surgeon?

If there is anything I can help you with let me know.

Angie
Kim

Wednesday, 7th November 2007 at 6:04 am

Hi Wendy

I had a CT scan and endoscopic us here near where I live which both showed nothing. I decided to go to John Hopkins in Baltimore Maryland which has an excellent reputation and more high octane equipment! I did have an octreotide scan and another CT scan. With the Octreo (nuclear medicine) they inject you with stuff that llights up certain tisue. Mine showed nothing. The CT scan showed a spot near the tail but they thought it might be extra spleen tissue (who knew about all this stuff?). Once they went in expecting to find a tumor and it turned out to be an accessory spleen. That’s the thing - nothing is definite with these scans until they open you up and look inside. And you really don’t want to be opened up and have nothing come of it! What have been your symptoms and results of bloodwork? I think my surgeon was skeptical when I first met with him. Then my Mom told him I was a menace on the road! Keep us popsted with your progress and good luck.
Elizabeth

Wednesday, 7th November 2007 at 9:50 pm

Went to see my Endo and got the results to my Imaging Tests. Didn’t see an Insulinoma, but my levels are much worse. What they DID see was a liver filled a TON of fat. He doesn’t know what to do with me now, so I being sent to see a UCLA Endocrinologist.
Who knows what’s wrong with me. . .
Lauren

Thursday, 15th November 2007 at 9:34 pm

Elizabeth don’t be discouaged I had an extensive MRI done at my local hospital and it showed nothing. It wasn’t until I went to a pancreatic specialist at MD Anderson that they found mine with a CTscan and mine was one of the larger ones-1.9 cm. Lauren
Elizabeth

Friday, 16th November 2007 at 4:05 pm

Hi Lauren!
Thanks for the pep-talk! It made me feel much better! :) I am actually annoyed with my current Endo now.
Here’s why. . .
I have fibromyalgia and I am seeing a Rheumatologist for it. He’s been the most concerned and supportive doctor I’ve had during this ordeal. Anyways, he wanted to see the results of any imaging tests I had performed, so I asked that my CT/US report be faxed to me so I could give him copy. My endo DIDN’T tell me everything the tests showed.
Yes, I have fatty infiltration in my liver; quite severe. But I also have a fat-filled umbilical hernia, (no biggy), a 6cm mass attached to the left lobe of my liver; and another mass which cannot be identified. Aside from the fatty liver, the radiologist recommended that the masses should be taken seriously, since she couldn’t tell if they were benign or not. But when I asked my Endo about it, he told me that he simply “forgot” to tell me. . . even though he was looking at the report when I saw him.
*Sigh* What a pain. :/
NS

Saturday, 17th November 2007 at 9:05 am

I fully sympathize with you. After similar experience, nowadays I have started insisting on getting a copy of the written report of the Radiologist. I have also found that the Doctors do not tell you during your OV all that the Radiologist says in his report. The trouble is that you do not have your Report in your hands at the time of the OV to ask followup questions. The Doctors shove you out before you can ask the questions. They do not keep open email communications with the patient. You have to go thru hard-pressed OV apointment-assistants.
Also try to get your own copy of the disk that follows tests.
Afterwards, insist on getting a FINAL Report from the Radiologist, Endocrinlogist etc. You have to safequard yourself from the Doctors, almost.
Kim

Saturday, 17th November 2007 at 10:20 am

Hello all - If any of you out there who have already had surgery are still with us I have a question. My surgeon wants me to have a follow up CT scan. I am not crazy about the idea for several reasons. I feel as though I’ve had enough scans to last a lifetime already! He does not seem to be able to offer a compelling reason to have the CT scan. And, since the regular CT scan did not pick up anything initially and the high octane scan was not completely conclusive, I wonder what the point is, whether it would show anything anyways (I am not even sure what they’re looking for). Thanks, Kim
Brendan

Saturday, 17th November 2007 at 10:49 am

Kim,

There’re multiple types of CT scan - could it be that he wants to do a follow-up trying a different methodology? The radiologist didn’t see mine with CT, but they did find it on an MRI - of course, the surgeon was able to see it on both. You’re somewhat at the mercy of the radiologist since they’re the ones who actually interpret the imaging. Given that insulinomas are rare, they don’t see them with much frequency.

Here’s a section of this journal article describing the efficacy of various techniques:

http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2006;volume=25;issue=5;spage=244;epage=247;aulast=Jyotsna

“In this study, conventional CT successfully localized the tumor in 33%, single-slice helical CT in 58%, multi-detector CT in 100%, MRI in 85% and angiography in 65%,and a combination of available methods achieved a sensitivity rate of 88%. In general, trans-abdominal US and conventional CT perform poorly. As in other studies, our data show that if dual-phase CT does not identify a lesion, conventional MRI is unlikely to be of additional help. As compared to the conventional technique, MRI with special fat-suppression sequences during breath holding has a high sensitivity; this however needs special expertise. Endoscopic ultrasonography and arterial calcium stimulation and venous sampling (ASVS) have been reported to have a sensitivity of 96% in localizing insulinomas; [however, we do not have facilities for these.”

Perhaps you could enquire as to whether it was conventional or dual-phase that they used previously?

Brendan
Kim

Saturday, 17th November 2007 at 11:04 am

Brendan -

Thanks for your reply. I think there’s a misunderstanding perhaps, I’ve already had my insulinoma taken out. The surgeon wants to do post-surgery follow-up CT scan. He said I could have it done here near where I live but the scan here is not very “strong”. I don’t know what he woulld be looking for and whether it would show anything, hence my hesitation.

Thanks, Kim
Angelique

Saturday, 17th November 2007 at 12:01 pm

Hi everyone!

Kim: I had my surgery 4 years ago - I was in a pretty bad way after as it was on the neck of the pancreas and spent long hours in surgery. I have been followed up yearly with CT scans. My last Ct was last November. Originally, my scans were done post surgery to check everything else was in working order as I had a laparotomy to remove the insulinoma and most of the pancreas. I guess they also check if there are any more suspicious tumors. Before surgery, Ultra sound and CT scans confirmed I had a slightly inflamed pancreas and liver. i never questioned why, I just had them done.
Brendan

Saturday, 17th November 2007 at 1:07 pm

Kim - my apologies. Apparently my reading comprehension sucks. I’d like to blame it on the lack of threaded conversations on the site, but really, it’s just a lack of mental acuity. ;)

I’m 18 months post-operative, and I’ve had regular blood panels as follow-ups, but no additional CT scans or MRIs. I did have a surprisingly low result on my last screen, so I’m now being checked more frequently in case of reoccurence (which would apparently imply malignancy, unfortunately). Still, they’re not going to order more scans unless my numbers continue to drop. Were they concerned that the tumor might spread?
Brendan

Saturday, 17th November 2007 at 1:07 pm

Kim - my apologies. Apparently my reading comprehension sucks. I’d like to blame it on the lack of threaded conversations on the site, but really, it’s just a lack of mental acuity. ;)

I’m 18 months post-operative, and I’ve had regular blood panels as follow-ups, but no additional CT scans or MRIs. I did have a surprisingly low result on my last screen, so I’m now being checked more frequently in case of reoccurence (which would apparently imply malignancy, unfortunately). Still, they’re not going to order more scans unless my numbers continue to drop. Were they concerned that the tumor might spread?
Kim

Saturday, 17th November 2007 at 1:56 pm

Angelique - Thanks for your response. Seeing if other organs and the pancreas are in working order makes sense.

Brendan - No need to apologize! I’m sure my writing was not very clear! I hope that the low numbers are just a fluke. Keep us posted. I don’t know exactly what they are looking for - they haven’t been able to give me a reason. My gut feeling is jthat it is ust to cover themselves, which I understand. I am duly warned but I still do not want another scan unless there is good reason to have it done!
Peggy

Saturday, 17th November 2007 at 3:28 pm

Brendan,

Seriously?! It’s unbelievable that your sugar level is low again. You, I think, were the first on our blog to have had the surgery. Hopefully your hypoglycemic levels were due to something common like an over indulgence in sweets maybe? How were the insulin levels? I will be praying that it is not due to a malignancy! Please keep us informed.

Peggy
Gayle

Sunday, 18th November 2007 at 12:43 pm

I had my insulinoma removed in July and my surgeon would also like me to have a CT done 6 months post op. He has also requested that I have the CT in his hopital’s lab rather than at home. I did have problems with my drainage tube after surgery and did have what her referred to as a small “ball” of fluid in my abdomen. He spotted this because of the CT I had 3 weeks post op. I guess I haven’t questioned him as to exactly why he would like another CT scan but assume it’s just to take another peek at my abdomen area. I also will also feel relieved after this CT if he tells me everything looks great.
My sugar levels are staying around 110-120 after fasting post op. I am also am battling hyperthyroidism. I received the radioactive iodine treatment a week ago. My Endo feels that my overactive thyroid may be keep my sugar levels higher. Hopefully once the thyroid problem is taken care of my sugar levels will drop down a bit.
Other than this I feel great. I’ve lost the 30 lbs I had put on while I had the insulinoma. I can now eat just 3 times a day rather than all day long.
Richard Vivash

Sunday, 18th November 2007 at 2:50 pm

Hi all,
Since last writing I’ve been in to Kings College Hospital in London and had the 72 hour fast followed by a CT scan.
The 72 hour fast lasted 19 hours. It would have been shorter but the lab took 2 hours to bring the results back from the blood test before they could take another blood sample and then end the fast. Boy am I glad I don’t have to go thru that again. I’d assumed I was going to be sitting there watching TV, waiting for the sugar level to drop, they’d take a sample of blood and then another sample 30 minutes later and that would be it. Nobody told me I’d be on another planet and really uncomfortable. I really, really didn’t enjoy that. The CT scan proved inconclusive but the MRI I had done at the end of Sept this year along with the blood results taken last week have proved that the insulinoma is in there. I’m hopefully having surgery in the early part of December (next month). I really can’t wait to get this thing out of me now so I can start living again.
The staff at Kings College have been fantastic, especially Dr Aylwin who has done just about everything possible to reassure me and make the journey towards surgery all the more bearable.
Good luck to all.

Richard
Susan

Thursday, 22nd November 2007 at 1:17 am

Best of luck to you, Richard! My mother went through all of that and thinks the testing was worse than the surgery. But it is all more than worth it. She is two weeks post op and has lost over 14 pounds so far. It is odd, though, because everything is topsy turvy. Tomorrow for Thanksgiving, instead of eating plenty of potatoes, stuffing, cranberry sauce and pie, she will be watching her carbs as her blood sugar tends to be a bit high now.

Be sure to reread all the entries here. They are most helpful.

Susan
Steve

Friday, 23rd November 2007 at 4:43 pm

Susan!!

I have not posted in a while, but i noticed you went to U. of Iowa for surgery! I just met with Dr. O’Dorisio down there and i am scheduled for surgery on Jan. 4th. was your surgeon Dr. Howe? if so, how did you like him? seems my tumor is at the head of the Pancreas, so it looks like i will have a whipple. but i am just glad that they are going to get it out of there since it appears that it is somewhat malignant since it has metastisised to my lymph nodes. Thanks in advance for any info! congrats on things going well!

Steve
Steve

Friday, 23rd November 2007 at 4:43 pm

Susan!!

I have not posted in a while, but i noticed you went to U. of Iowa for surgery! I just met with Dr. O’Dorisio down there and i am scheduled for surgery on Jan. 4th. was your surgeon Dr. Howe? if so, how did you like him? seems my tumor is at the head of the Pancreas, so it looks like i will have a whipple. but i am just glad that they are going to get it out of there since it appears that it is somewhat malignant since it has metastisised to my lymph nodes. Thanks in advance for any info! congrats on things going well!

Steve
Gayle

Friday, 23rd November 2007 at 5:36 pm

Hi Steve,
My surgeon was Dr. Wilkinson and the resident surgeon who worked closely with him was Dr. Nowell. They are both excellent doctors. I think I did meet Dr. Howe during my hospital stay and do remember seeing him around but really don’t know anything about him. I found the following link.

http://www.uihealthcare.com/depts/cancercenter/healthprofessionals/neuroendocrine.html

The entire staff that I came into contact with were great and I received excellent care. You should definitely feel that you are in good hands. I’m sorry that your tumor appears to be malignant. Is it an insulinoma?

Please keep me updated and let me know if you have any further questions. You can also email me at gjmielke@mchsi.com if you’d like.
Steve

Friday, 23rd November 2007 at 7:34 pm

Susan,
thanks for the info! i have been very pleased as well from our initial visit with everone at UI.! I do have insulinoma, and i have heard mixed views on weather it is “malignant”. it has metastisised to the lymph nodes, so between that and the size of it, it appears it could be. when i asked, i was told it is hard to stage em, but that it should be taken out. i am confident in their abilities (which i guess is a good thing seeing as how they are going to gut me! LOL). It also appears that i may Have MEN1 because i also have Hyperparathyroidism, so that is another peice of the puzzle. but everything i have read points to surgery regardless. thanks again for the help! i will keep you updated! Happy holidays!

Steve
Mag

Tuesday, 4th December 2007 at 7:56 pm

Susan and Steve,
I have been reading the posts on this site for a few months now and finally decided to post. I had an insulinoma removed on June 20th at the University of Iowa as well. I was very impressed with everyone there. I know Dr. Howe, but Dr. Suggs was my Dr. Isn’t that odd that three of us have all went there seeing it is so rare? I was so glad to find a site where other people have gone through the same things. It has really helped me.

Mag
Gayle

Tuesday, 4th December 2007 at 9:35 pm

Mag,
Wow, this is something! When I first met Dr. Wilkinson he told me they only see 2-3 insulinoma per year. I’m guessing that number has gone up. Tell me about your insulinoma experience.What kind of surgery did you have and how are you doing now?
Susan
Steve

Tuesday, 4th December 2007 at 10:40 pm

Hey Mag and Susan!

that is weird! the good news is so far we have all had good experiences there!!i am curious as to whay type of surgery you had as well mag. thanks for posting!

steve
Mag

Wednesday, 5th December 2007 at 10:01 am

Susan,
My surgery went very well, but it took 8 hours. Apparently my tumor was sharing a major blood vessel with my spleen so they had to be very careful. I have a horizontal incision about 8 inches across my mid stomach area. They were not able to take just the tumor, they had to take about half of my pancreas. I was in the hospital for 13 days after the surgery. It would have been much shorter, but I got pneumonia and and spiked a high fever the day before I was supposed to go home. I am doing well, but I still have some abdominal pain at times. I don’t have another appointment until Jan. so I will talk to my dr. then. I still don’t feel completely 100% but I am definitely getting there. I was very lucky that my local Dr.’s were able to diagnose me so quickly. Everything started towards the end of May of and I was able to have my surgery during the last part of June. I am a teacher so I didn’t have to go back to work until September which worked out great. I hope everyone is doing well.

Mag
Simon

Friday, 7th December 2007 at 12:36 am

I’m 24 years old, male, and was diagnosed with an insulinoma two months ago. Since then I had a CT scan, MRI, and endoscopic ultrasound. None of the tests showed that there is an insulinoma but the doctors are saying it must be a small one. Now they are telling me the next step will be an angiogram, so I’m going to the University of Chicago hospital soon.

My symptoms started a couple years ago but I always thought it was just a bad diet, so I stopped drinking sodas and just stuck with water (I drank A LOT of soda). I only weighed 130 pounds at the time. Then I had problems with my metabolism, and it turned out I had hyperthyroid so I took medicine for that for a year and it went away so I got off the meds. I quickly gained 30 pounds once my thyroid was working properly. Two years ago I experienced a grand mal seizure after a day of doing a lot of outdoor work (digging). I was at a hospital for two days and they did numerous test on me (EEG, MRI, catscan) and they could not find what the problem was. I do recall not eating much that day. Now, two years later, I weigh 190 lbs, and I have to eat snacks every couple of hours or I start feeling dizzy. In August I had another grand mal seizure while at a restaurant. My friends and I were waiting for our food and the next thing I remember I woke up staring at the ceiling of an ambulance and the paramedic asking me questions. Supposedly it took 6 people to hold me down because I was struggling so much when I was in shock after the seizure. So I went to my endocrinologist and had a fasting test done, after 6 hours I was feeling dizzy, I wasn’t speaking as clearly as usual, and they tested my blood and concluded that I must have an insulinoma. Now I can’t drive any motor vehicle for six months because of my seizures, and I have no social life right now which is pretty hard. Even with health insurance my bills are stacking up and it’s so depressing. I hope everything turns out as well for me as it has for others here.
chris

Friday, 7th December 2007 at 5:33 pm

Hi all.

Can anyone tell me what the next step would be after the 72 hour fast? as it has proven inconclusive,

Chris
Steve

Saturday, 8th December 2007 at 2:39 pm

Mag,

its great that the surgery went well! i am curious if they are going to do a horizontal cut on me or just go back in where they did the biopsy (which was a laperotomy and was vertical from about mid to upper stomach to just below my belly button…) i kinda hope they go back in the same way…i want to get a zipper tattoo at the top of it when it heals! LOL Thanks again for the info! it definately helps put my mind at ease!

steve
NS

Sunday, 9th December 2007 at 1:10 pm

It would be helpful if in referring to MRIs, information on the make and Tesla of the machine on which the tests were done, is also given. Recently I became aware of differences in capabilities of 1.5 Tesla machine vs. 3.0 Tesla. Even if the machines are equal, I have also found that the results depend on the skill of the MRI radiologist. Everyone, please bear this in mind and do not jump to your own conclusions. Recently an endocrinologist sent a patient post haste to a cadiologist for a pre-surgery clearance, the clearance was obtained and the patient then saw the Surgeon, who found that there was nothing to operate on, explained away the situation as due to inexperienced radiologist in the Hospital! So much suspense, so much agony,…
Angie

Sunday, 9th December 2007 at 1:19 pm

Simon

Reading your post your life is certainly on a downer - however being diagnosed is the major problem and now you should be on the way to having an op and coming out the other side. Believe me the change is fantastic. My life is so different and the symptoms non existent now!

I cant believe how ill i was and how different things are now! Try not to be so depressed easy to say I know but there really is a life after surgery!!!!

Just a note to anyone else who has had the surgery - My hair on my head has really thickened up since the op and has gone curly when I have always had straight hair… I imagine it is similar to people who have had chemo lost their hair then it has regrown! It had gone very thin and I had no idea what was cause it until they found my insulinoma! Funny how things are!!!

Best wishes to all…..

Angie
Mag

Monday, 10th December 2007 at 7:58 pm

Hi Steve,
You will have to keep us posted and let us know how everything goes. You are definately in good hands. Any idea when you will have surgery??

Mag
Steve

Monday, 10th December 2007 at 9:10 pm

Mag,

Thanks, I will keep you guys posted! i am scheduled for surgery on the 4th of Jan. so we are flying down on the 31st of dec. they said i should be able to fly after about 10 days…..im a bit nervous about that though, its a long ride home!

steve
Laura

Friday, 14th December 2007 at 11:50 am

Simon, I had my surgery at the University of Chicago, Dr. Matthews is amazing! Where did you have your other tests performed? As many other people have noted, an MRI is not an MRI, it really does depend on the quality and the technician. According to Northwestern I had no tumor. I went to U of C and there it was. I think going there is a step in the right direction. Good luck!

Laura
Peggy

Friday, 28th December 2007 at 4:00 pm

Hello everyone!

Guess what my best Christmas present was…THEY FOUND MY TUMOR! Can you believe it? It took a few days for me to believe it since they’ve been looking for…15 YEARS!

So, for anyone out there that hasn’t been diagnosed yet,(Simon) don’t get discouraged, just go somewhere else! I have had multiple MRI’s, CT’s endoscopy’s and an angiogram that showed nothing. My insurance finally approved USC to do the CT which found the tumor. (Maybe they got tired of paying the paramedic, and ambulance bills) My doctor said their machine is better but he thinks it’s their technique that makes a difference. Something about how fast they push the contrast through. The last MRI was only a few months ago. The tumor is 1 cm, so it’s not the size that kept the other tests from revealing it. Now, because of how big it has become and it’s location on the tail, they will probably have to take part of the pancreas as well as the spleen. I’m not looking forward to a possibility of becomming diabetic, but I am thankful it’s finally found.

Mag,
8 hours, wow! Did they remove your spleen?

Richard,
Have you had the surgery? Hope it went well. There’s nothing worse than being on another planet!

Susan,
How is your mom doing?

Steve,
I guess you’re the next one due for surgery. I know how hard it must be, but you have such a great attitude! A zipper tattoo, that’s hillarious. When they did my endoscopy they found my lymph nodes to be enflamed..guess I’ll take NS advice and look into that! I asked my doctor if left untreated, an insulinoma could turn malignant. He admitted they just don’t know.

Brendan,
How have your levels been?
Brendan

Friday, 28th December 2007 at 4:12 pm

The lowest I’ve tested myself at has been mid-70s; given that I’d never tested my blood sugar prior to this delightful couple of years, I have no idea what should be considered normal. The idea at this point is, essentially, to see if it gets worse over time, but it’s so variable that it’s hard to really feel like it’s a definitive solution to the problem. Basically, it sounds like I’ll have to live with the uncertainty (which is better than the certainty of malignancy, of course).
Penny

Friday, 28th December 2007 at 6:38 pm

Peggy!
THAT IS MAGNIFICENT!!!! I am sooooo happy for you. :) :) :) hip hip hurray! I am so glad that it was found. Have you scheduled a surgery date?

Homa,
Are there any updates on your end? I’ve been wondering how you are doing.

-Penny
Steve

Friday, 28th December 2007 at 11:17 pm

Peggy,

Congrats on finding the tumor! yeah, i am next up! i leave for U. of Iowa on sunday and i ma scheduled for surgery on the 4th! as for Insulinomas being malignant, it is rare, but does happen i guess in 10 percent of em from what i have read. they found mine originally in the lymph nodes and thought it was a recurrance of my hodgkins Lymphoma until they did the laperotomy to biopsy the lymph nodes. i hope they find that they are just inflamed and nothing more!! Good luck, i will keep you all posted!

STEve
Wendy

Saturday, 29th December 2007 at 8:04 am

Dear All,

Just to let you know that I am now 11 days post surgery and am doing well, hope that that reassures some of you I am up and mobile and moving around more and more each day. I spent 5 days in hospital. They removed an insulinoma which was 1cm in size from the posterior tail part of the pancreas next to the splenic arteries. Although I had to sign consent to remove the tail part of the pancreas and the spleen my surgeons were very careful and competent and managed to do 60% of the op laparoscopically and then had to open me up when it was a bit tricky but by doing this and being careful they saved the tail of the pancreas and the spleen which I am very grateful for. The operation lasted for 7hrs. They have been excellent at the hospital in Hammersmith and I would recommend this hospital to anyone as it is the centre of excellence for this condition and they treat insulinoma patients from all over the uk. I have been undergoing tests since July and finally had it removed on December 18th but was home in time to be with my kids for Christmas. Although still convalescing and a bit sore already I note how different and more energetic I feel and how I dont have to eat all the time! Wishing all of you the best of luck with forthcoming surgery and you really will feel a changed person afterwards I promise.
Angie

Saturday, 29th December 2007 at 8:27 am

Peggy

This is fantastic for you at last! Its ridiculous how long and how much you have suffered waiting for this! Wish you all the best and im sure now you are on the home run!!

Wendy

Glad to hear your surgery went well.

I didnt know Hammersmith was the ‘centre of excellence’ for insulinomas as Barts and the Royal London also treat people from all over the Uk with insulinoma. With insulinoma being so rare many hospitals do not have the facilities to identify and deal with the symptoms properly.

Certainly London hospitals are the place to be and thank goodness I was lucky enough to be local and not have to travel hours for appointments and people were close enough to visit.

Who was your consultant and surgeon? Mr Bhattacharya was my surgeon, he is supposed to be the top man for insulinoma (he has done about 35 which is a lot for how rare it is) and works closely with the team at Barts where I had my preliminary tests and scans.

My tumor was in the head and I was possibly up for a whipple but luckily that didnt happen - Im coming up for a year in february and Im going to be celebrating!

All the best to everyone and happy healthy new year to all!

Angie
Homa

Monday, 31st December 2007 at 1:45 pm

Hello everyone
I just wanted to give you guys an update on what was going on with me. They finally scheduled my surgery for January 16th at MD Anderson in Houseton. I am going there next week for preop appointments with the doctors and do the last set of tests. After the biojpsy which was positive for insulinoma, they decided not to do the 72 hour fasting again. There would have been no sense in doing that again. I will get the calcium angiogram done next week too. I guess they want to do all the diagnositc tests to better help localize the tumor. it is located at the head of the pancreas. I will find out more about it next week. I will be having two surgeries at one time. I have developed an incisional hernia from my last unsuccessfull surgery for insulonoma last year. I have a huge buldge in my belly. I look like I am four month pregnant. right now the hernia is bothering me more than the insulinoma. I have no evergy and I can not lift anything heavy and it is just uncomfortable. I can not wait to get it over with. I will be a whole new person. in more ways than one. I had planned on getting married on december 29th, but we had to postpone the wedding until this spring due to surgery. As susan had said it, I probably need to go buy a new dress, lol.

Peggy
Congradulations. I am so happy for you. I was thinking about you the other day and prayed that they would be able to localize your tomor soon. You have been dealing with this for a very long time and I am thrilled to hear that they were able to find it. You and I are the oldest members of this site who have not had surgery yet, but our time is coming. Have they set a date for surgery?

Penny
Thanks for thinking of me. I am just counting the days to be done with all of this. I am anxious and nervous and excitied. I keep having nightmares for some odd reason about surgery. I guess after going through a previous surgery, I am a little scared of what could happen, but I am in good hands. How are you feeling?

Lauren
I am finally set to go for surgery. I have a question. I guess this is a question for anyone who had done this test. Did you have to do the calcium angiogram? They have me scheduled to do an MRI immidiately right after the calcium angiogram and right after that I have an appointment with a doctor and I got to fly back home that afternoon. I am worried if I will be able to go through all of that after that test. How intrusive is it. I think I remember reading you have to lay down for two to three hours afterwards. I am just worried about being able to catch my flight that afternoon.
I am meeting with Dr. Evens again next week. I am also meeting a plastic surgon who is going to work on the hernia after Dr. Evens gets done with his surgery. Dr. Evens told me last time that the whole thing would probably take about six to seven hours. How long did you stay in the shospital and how was the flight back home. I have two and a half hour flight to look forward to after the surgery. since you did your surgery there, any infor that you could give me would be greatly appreciated and would give me some sense of comfort

Thank you Angi, Aileen and kim for your well wishes. I am sorry I was not able to respond back sooner. Kim, I still do not know if i have MEN 1 or not. I figured it it was positive they would have told me by now. LIke you said, the other stuff that is showning on the CT could be something else. Knowing that you guys are here and you know how it feels to go through all of this means a lot

Good luck with your surgery steve and keep us posted

Wishing everyone a happy and healthy new year
Homa
Lauren

Monday, 31st December 2007 at 3:13 pm

Homa that is fabulous news! I did not do the calcium test as my tumor showed up clearly with the spiral CT scan. If Dr. Evans is handling your case I am convinced you are in the best hands possible. I am not going to lie to you I had a horrible time after the surgery with gas, constipation and cramping so bad I thought I would rip in two. I took laxatives, and whatever gas meds they would give me to no avail. I had horrible gas and cramping still for about several months after the surgery, it finally went away on its own. Also after the surgery my whole body swole up really bad and they had to put a tube down my throat into my stomach to release the trapped fluids. I had this for about 5 days. I don’t think its typical. Oh and one word:popcycles!! That is the only thing you will be able to eat for several days afterward but they keep a good supply of them in the break room area so hopefully you have someone going with you that can fetch popcycles for you. I was probably eating about 10 a day!I was in the hospital 2 weeks I think after the surgery. I drove home as I’m in New Orleans. It wasn’t bad. Like I said I had horrible gas pains for months but I’d absolutley go through the whole thing again as I feel wonderful now and it was SOOO worth it!
Lauren

Monday, 31st December 2007 at 3:22 pm

Homa, one more thing, the staff at MD Anderson is excellent, they seem genuinely concerned about your comfort and well being. The only problemwith the staff I had is that the pharmacy is slow. When you need a certain medication if the nurses don’t have it on hand they have to order it from the pharmacy and you could be waiting 2 hours. The nurses themeselves say its a problem. I had to wait 2 hours for pain medicine soon after the surgery as my epidural started wearing off on one side of my body. My mother got irrate with the nursing staff but there was nothing they could do.Hopefully you won’t have this problem. My advice to you is if there is any medication you think you need take this into consideration.
steve

Thursday, 3rd January 2008 at 3:17 pm

Hey guys,

well, the big day is tommorow for me! i met with the surgeon yesterday, and the tumor looks like it is in a pretty good place as it appears there is some space between the tumor and the arterys, so that is good! anyway, i will keep you all posted! thanks so much for all help!

Steve
steve

Wednesday, 9th January 2008 at 7:49 pm

well, I am 5 days out and doing well so far. i am a bit sore, but i am now eating liquids and they will remove my epideral and catheder tomorrow. i was very impressed with Dr. Howe and his entire staff! they continue to treat us very well! i am a bit tired, so i will keep this short, bt i will post a more lenghty reply later on.

steve
Gayle

Wednesday, 9th January 2008 at 7:57 pm

Hi Steve,
Glad to hear you’re doing well and are happy at the U of I. Glad to hear that you’re up and around. I have my 6 month post surgery follow-up appointment with Dr. Wilkinson on the 14th. Let us know how everything went when you’re up to it.
Mag

Wednesday, 9th January 2008 at 8:14 pm

Hi Steve,
I am happy to hear that you are doing well. I will be heading to U of I next week for my 6 month post op appointment. Take it easy.

Peggy,
No they didn’t end up having to take my spleen. I think that is why it took so long because they wanted to be able to keep it. I am glad to hear that they found your tumor. I was definitely lucky that they were able to find my tumor so quickly. I was diagnosed in the end of May and had surgery in the end of June after numerous CT scans which showed nothing and an endoscopic ultrasound in which they were able to find it. Have they scheduled your surgery yet??

Mag
Gayle

Wednesday, 9th January 2008 at 8:18 pm

What day will you be at the U of I Mag? I’ll be there next Monday the 14th.
Susan
Mag

Friday, 11th January 2008 at 7:55 am

Susan,
I will be there on Friday the 18th. Wouldn’t that have been funny if we both would have been there on the same day.

Maggie
Homa

Sunday, 13th January 2008 at 6:56 pm

Homa
Hi everyone
I just wanted to let you all know that I am going to Houston for surgery tomorrow. The surgery is scheduled for Wed Jan 16th. I went for the calcium angiogram last week and the test went well. I will get the results on Tuesday when I meet with Dr. Evans. At that time he will tell me the whereabouts of the tumor. The good news is that I do not have MEN-1, but I still may have multiple insulinomas. I am scheduled for a ten hour procedure which will include having surgery for my hernia at the same time. Due to this, I am looking at a more extensive recovery period. Wish me luck. I will post as soon as I am able to. Talk to you guys soon.

Homa
steve

Thursday, 17th January 2008 at 10:45 pm

Hey all

Thanks for the responses. i am finally back home in alasak. let me tell you that was one heck of a trip home…no fun at all! other than that, things are going as hoped. i am trying to eat a bit more, but that is the hardest part. i am still really tired but hey this was no small surgery! LOL Hey Susan, i saw Dr. Wilkerson on Sat. because Howe was at his kids hockey game. he seemed nice. i also saw a couple of other surgeons while he was out. but dont remember names….i was kinda druged up! anway. hope all is well with everyone. Homa, good luck!
Peggy

Tuesday, 29th January 2008 at 4:30 pm

Hello everyone,

I hope you are all doing well.
Steve, I’m glad you are home and doing well. Was the tumor they removed definitely malignant?

I have a surgery date! February 13th. I’m mostly anxious but a little nervous.
I can’t remember anymore who had it done laparascopically, but I would like to know how it went for those who did.
Wendy, I do remember they attempted yours that way but had to go in. Did they think they could have saved the pancreas initially?
Mostly I’m curious about pain management for laparascopic procedures.
Kim

Wednesday, 30th January 2008 at 12:49 pm

Hello all

Peggy, CONGRATULATIONS! Such great news at long last. I don’t know how you have survived with this condition for so long. A year was plenty long enough for me! Keep us posted and GOOD LUCK!

Steve, So glad to hear you are done with surgery and recovering well

Homa, I am wondering how your surgery went. I hope all is well an that you are on the road to recovery also

I can’t believe my surgery was 4 months ago. It all seems like a dream. Have been feeling great but the permanent stitches are poking up and irritating so I will get those taken out in a week. The scar is healing well - my daughter calls it my shark bite! Life is back to normal for the most part although i do have a wee bit of anxiety around doing things that previously caused a major episode. i’m sure that will pass with time. I wonder if anyone else has this experience.

Take care everyone,

Kim
Penny

Wednesday, 30th January 2008 at 1:49 pm

Hello Everyone!
It is so great to hear all of your stories and updates. To those of you who have just had or are about to have surgeries, please keep updating us! I really enjoy reading your posts. I am now over 6 months post-op and doing really well, feel normal, like nothing had ever happened to me. And I don’t know if this is what you are talking about, Kim, but I remember being nervous about exercising again (because when I had the tumor, exercise would cause my blood sugar to drop RAPIDLY). So doing a workout was a bit nervewracking after my surgery…i had to take my blood sugar during and after the workout just to “make sure” :) but my nervousness went away after a few times. Yes, I do think with time the anxiety will pass.
Penny
steve

Wednesday, 30th January 2008 at 1:59 pm

Peggy- it looks like it was malignant because they found a second primary tumor in the duodenum when they sent it to pathology. the great news thought is that my liver looks great so no mets there! and they want me to do PRRT treatment for the microscopic stuff.

Kim, thanks! its a slow recovery but hey! could be worse!

so anywone have trouble eating after the surgery ? any suggestions? it seems to be getting better but S L O W! also, this being of work stuff is BORING!! LOL
Kim

Wednesday, 30th January 2008 at 2:26 pm

Steve, I lost a fair amount of weight in the weeks after surgery. I just wasn’t hungry and couldn’t handle much. With the holidays over and the heart of winter upon us (I live in VT), my appetite has rebounded! So give it time. I actually preferred it the other way!

Penny, thanks for your input. So glad to hear you’re doing well and I think what you mentioned is exactly the kind of thing I am talking about.
Rebecca

Friday, 1st February 2008 at 7:32 pm

Hi. I am going in on Monday for the 72-hr fast. I have some concerns because this is the first time my dr. has conducted the test for insulinoma. He first told me to eat breakfast before I come in, and then he called me today and told me not to. In my opinion, this is going to make a big difference in the way I respond to the test. Also, is the first blood draw supposed to take place at the beginning of the fast? Can anyone tell me what the standard procedure is? I want to make sure I am going down the correct path here.

I’m so glad I found this site. You guys are certainly an inspiration regardless of my outcome.
Thank you,
Rebecca
Richard Vivash

Sunday, 3rd February 2008 at 4:41 am

Hi, well I finally had my Insulinoma removed on the 12th December 2007. I was starved for 4 days post op and just given fluid via an IV drip. This was to test that the procedure had cured me of a low blood glucose level. Fortunately all seemed well, so I was given the go ahead to start eating and drinking as normal. However I had no appetite and no urge to drink. Nearly 2 months later and I’ve only just started to eat and drink as I used to be able to, although in the process I’ve managed to lose about 28 pounds in weight. I needed to lose weight anyway.
There were a few other complications in Kings College Hospital though, mainly involving an abscess on my liver, which meant that an 8 day stay after the op, was extended to nearly 5 weeks.
I cannot thank my surgeon, a Mr Klaus-Martin Schulte, enough for giving me back my life.
He’s a remarkable and very skilled man with a very comforting and friendly attitude.
steve

Sunday, 3rd February 2008 at 1:48 pm

Richard,

Congrats on the surgery! glad everything went well.
Jane

Sunday, 3rd February 2008 at 6:26 pm

Hi Richard,
I had the op to remove an insulinoma and another tumour plus lots of pancreas in Birmingham, England last May and I too couldn’t eat properly for a very, very long time. I am better now than I have been for years. Everyone has noticed the difference; no more becoming semi conscious at work or talking drivel and getting extremely confused at home and at work. What a strange illness! I’ve been following the messages left here since then and I have to say I can see the the NHS is alive and kicking with some great expertise around. Lucky us!
Jane
Phil

Thursday, 7th February 2008 at 10:19 am

Rebecca,

My wife did a few 72-hour glucose fasts and had surgery last year to remove an insulinoma from the head of her pancreas. You should definitely NOT eat breakfast that morning - your system should be fasted as much as possible when you go in (meaning nothing to eat after you go to sleep the night before).

What happens is that you go into the hospital and your blood sugar level needs to drop to the point at which you become symptomatic (usually between 20 - 30). The nurses then will draw blood sample at THAT time and send it to a lab for testing. If your insulin, pro-insulin and c-peptide levels are up at the same time your blood glucose level is down, this is the chemistry “triad” that indicates the existence of an insulinoma. The reason it is called a 72-hour fast and is under medical supervision is that it sometimes takes people as long as 72 hours to get that the point where their blood sugar gets to the level at which they are symptomatic. I can tell you from my wife’s experience it doesn’t take nearly that long (in her case, a little over 12 hours, probably not even that long). Also, it is done under medical supervision because it may very well be too dangerous to do on an outpatient basis. The nurses will take your blood glucose readings periodically throughout the entire fast. Whatever you do, don’t let them take you off of it too soon, or else the blood chemistry results may not be accurate! You don’t want to have to go through it another time because that happened!

I hope that answers your questions - I don’t have what you probably have, but have enough knowledge about it from my wife’s condition to “be dangerous”!

Phil
Laura

Thursday, 7th February 2008 at 10:37 am

Rebecca, the 72 hour fast is nothing to worry about. besides all the blood draws, it is relatively painless:) Mine lasted about 2 hours total. What happens is you do not have breakfast (have someone drive you to the doctor or take a cab), then when you get there they draw blood and I checked my blood on my meter. Then you wait an hour and you check your blood again, then you wait an hour and you check your blood again. Assuming it continues to fall, the test is over and you are done as by then you are usually so low that they do not feel they can safely continue. The only reason my doctor did the blood draws instead of relying soleyly on my meter was to check proinsulin levels (that will tell them if you manually injected yourself with insulin to get attention) and to verify the accuracy of my meter. If you eat before you go in, the test will just take a lot longer as the food will raise your sugar. If you read other posts above, you will see lots of other people’s experiences listed to compare. Good luck!

Laura
Peggy

Thursday, 7th February 2008 at 4:41 pm

Hi Rebecca,

I did have breakfast first so I felt o.k. going in, but it did not take that long for my sugar to fall. I guess it depends on how active your insulinoma is. How low do you get and how quickly do you drop? As Laura said, they are checking your proinsulin compared to your sugar. If your sugar is pretty low and your insulin is still high, then insulinoma! Depending on your hospital, I agree that you’re safer having your own monitor as well. I dropped a lot faster than they expected. Good luck.
Peggy
Peggy

Wednesday, 13th February 2008 at 1:08 am

Hi All,

I’m going in tomorrow for a 7:30 surgery. I sure would appreciate anyones prayers. Hard to believe after 15 years things will be different.

:)
Angie

Wednesday, 13th February 2008 at 1:45 am

Peggy

A wish you all the luck in the world and will be thinking of you!
You will be a new person!

It was a year last week since my surgery and I still cant believe the difference in my health and ‘lack’ of symptoms that had become a way of life for so long.

All the best and post back when you can….

All my love Angie
Angie

Wednesday, 13th February 2008 at 1:52 am

Phil

Nice to hear from you again and I hope susie is doing well, It would be interesting to compare our experiences over the last year and how she feels now!

Angie
Kim

Wednesday, 13th February 2008 at 6:51 am

Angie! Good luck and I will be thinking of you. Sounds like you’re in the best of hands and we all will be thrilled to hear from you when you’re ready. As a friend said to me in September: Be a patient patient!

Best wishes, Kim
Angie

Wednesday, 13th February 2008 at 7:00 am

Kim thanks but its not me, Ive been “done and dusted”!!!!
Glad to hear you are doing well tho!

All the best
Angie
Kim

Wednesday, 13th February 2008 at 10:16 am

Woops! Brain cramp! I meant to write to Peggy!
Jon Mikel Iñarritu

Thursday, 14th February 2008 at 12:52 am

Kim:

That was funny as hell!

But also I wish all the luck in the world for Peggy, she will be doing just fine.
Angie

Thursday, 14th February 2008 at 2:12 am

Jon

We do like to keep you entertained!!!

AngieXX

I hope this is helping all your research!
Wheres my bunch of red roses for being your first ever post!!???
steve

Thursday, 14th February 2008 at 12:47 pm

hey guys,
been a while since i wrote, so i thought i would give you an update. so far so good after my surgery, no issues with blood sugar levels, and my stomach is FIANALLY working! woo hoo!! i talked with my docs out in Iowa and now we will wait another month or so and re-image to make sure that there is no further metastisis and go from there. i head back to work on tuesday, which is pretty good i think considering my surgery was Jan. 4th! good luck to those about to have theres! keep your head up!

steve
Peggy

Tuesday, 19th February 2008 at 11:36 pm

Hi Everyone!!

I thought this day would never come. Surgery was a success, the recovery room was a nightmare, but it’s all worth it in the end. They only took a small part of the tail and left the spleen. I had the drain out today, very weird. Not much pain anymore, but I have been runnning a temperature. Other then that I just feel very week.

So that’s my story, I’ll post again after I read all the updates. Thank you all for thinking of me and praying for me. I know it made the difference.

Peggy
Hazel

Wednesday, 20th February 2008 at 3:50 am

Hi,

Having struggled with hypoglycemia for many years I’m trying to find or rule out an insulinoma. My doctor thinks this is what I have and my symptoms are just like a lot of you describe except that I don’t black out. The hypoglycemia is however, severe enough to stop me sleeping without waking up to eat and causes a lot of other symptoms such as dizziness, slurred speech, racing heart and inability to concentrate etc.
I’d love some advice on which the really specialised hospitals are, as I am in New Zealand which does not have any insulinoma specialists and I’m fully prepared to travel to find this thing.

Thanks in advance for any suggestions you can give me, Hazel.
Kim

Wednesday, 20th February 2008 at 6:49 am

Yeah Peggy!! You’ll be hiking again in no time - congrats!!
Peggy

Wednesday, 20th February 2008 at 6:42 pm

Thanks Kim,
Hiking…I’m mentally ready! Just have to wait for my body to catch up. Isn’t it wonderful being sane, 100% of the time! I’m also looking forward to that energy everyones talking about having.

Steve,
I’m so glad you are feeling better and returning to work (though I can’t relate to that part). I love your attitude!

Rebecca,
How did that 72 hour fast go for you? Are you officially one of us?

Wow, I’ve been reding posts and all of a sudden I feel even more fortunate. The wait was worth it. First of all because I have allowed God to use this disease to teach me and I’ve seen Him work in the lives around me as well. Now I hope I can use what I’ve been through to help other people who have to go through their own trials. Also, waiting brought me to an excellent hospital with an awesome team of doctors. My surgery was just over two hours, the spleenectomy wasn’t nessessary and though I lost only a small part of the pancreas, it hasn’t caused any problems.
This operation was definitely my doctors area of expertice.

If anyone new has not been diagnosed yet, please consider USC Hospital.
Hazel

Tuesday, 26th February 2008 at 4:28 pm

Hi Peggy,

I hope you are still doing well and are able to get comfortable. I appreciate your feedback on USC and am making inquiries about having diagnostic tests done there. Partly due to your great outcome and partly because I can fly direct to LA from New Zealand. I have to admit it is a bit like working blind, being so far away and trying to work out who to contact etc, but I’ll get there! If you do feel up to posting I’d love to know the name of your surgeon seeing as they did such a good job.

Take care of yourself.
Hazel.
Penny

Tuesday, 26th February 2008 at 5:51 pm

Congratulations steve & peggy!!!! I am so glad your surgeries went well. Peggy, how are you feeling now?! Are you out of the hospital and at home?
Peggy

Wednesday, 27th February 2008 at 12:32 am

Thank you Penny! Sometimes when I wake up in the morning (by myself!), I am smiling, even before I am fully awake, because I am thinking clearly and anxious to begin my day! My body is a lot weaker than my mind at this point. I tried to do some laundry today and it just wore me out completely. I guess I have to be a little more patient. :)
I was only in the hospital for 3 days. I could’ve used one more but I was so anxious to be home with my family (and actually get some sleep at night). Thanks for your prayers Penny.

Hi Hazel!

You may have read that I have had 2 endoscopic ultrasounds done at UCLA and multiple MRI’s and CT’s done in Orange County in the last 15 years. The last CT was done just months before the CT at USC, but the former did not find it.

My surgeon at USC, Dipip Parekh, said that there is not many doctors who can remove insulinomas laparascopically. Parekh is one of the few who can. He said he has seen 40 or 50 insulinoma patients, and could not locate the tumor in only one patient. He also said that their technique used at USC can find the insulinomas in 90% of the cases!
Pretty good odds. I’d say you were wise to come check them out.

I hope your search ends in answers and brings healing soon. Insulinoma is a very difficult disease to live with.
If I can give you anymore information or help with your search, please let me know.

Peggy
Hazel

Wednesday, 27th February 2008 at 2:38 am

Peggy,

Thank you so much for the information which I will follow up. I am truly grateful that you took time out from your own recovery to give help and support. I just may need to call on your expertise again!

May good things come your way.
Hazel.
Kylie

Friday, 7th March 2008 at 6:55 pm

Hi Everyone,

So there is more of us out there in this big wide world, only been looking for a website like this for the last eight years. Just a quick “Hello” for the time being (have to go & eat). I am 37, from Western Australia, diagnosed as suspected insulinoma about eight years ago, can trace the “symptoms” back aprox 18 yrs (always thought I just had a fast metabolism). Finally decided to trade in the dinosaur of a specialist I was seeing (who had written me off because I’m not overweight) & making an appointment with someone else on Monday.
Just excited there is finally people out there who understand.

Hope everyone is having a great day!!
Kylie.
Kim

Saturday, 8th March 2008 at 4:07 pm

Homa - Are you out there? Just wondering what is happening with you? I’ve been thinking about you and hoping all is well.

Kim
Kim

Monday, 10th March 2008 at 5:05 am

Welcome Kylie,

The diagnosis should be fairly straightforward. Its finding the timor that can be difficult and frustrating. Keep us posted on your progress! Lots of good advice here. I dn’t kknow what I would have done without this site!

Kim
Kylie

Monday, 10th March 2008 at 6:03 pm

Hi Kim,

Thank you for responding to my message. All the blood tests I have had all point towards an insulinoma. Actually did have a CT Scan but they couldn’t see anything, that was when I was told to go home & live with it, but I am sick of living with it & I suspect that it has caused PCOS & I hit menopause at 33 (no wonder we couldn’t get pregnant). Has anyone else been diagnosed with PCOS? Anyway, have booked an appointment with a new specialist, hopefully he will be a little more open-minded.
Have loved reading through everyone’s experiences, I have been terrified at the very thought of surgery & possible after effects. You all give me hope of a new life (don’t know if I can actually remember what a normal life is).

LOL, Kylie.
Peggy

Monday, 10th March 2008 at 10:36 pm

Hi Kylie,

Trust me, you will remember what normal is like. It comes back! Mostly the enthusiasm for life. At least that is how I feel, and it has only been 4 weeks! Don’t be afraid of surgery, it wasn’t as bad as I thought it would be and is soo worth it. The trick is to find a doctor that can do it laparoscopically.
You may have read that it took them 15 years to find my tumor. It was there all along though. I would ask your new doctor what the percentage of insulinomas cases were confirmed using their equipment and technique. I had a CT done just months before that didn’t find it, before I went somewhere else.
Hopefully this is your time to be healed. Keep the faith!

Peggy :)
Kylie

Tuesday, 11th March 2008 at 6:09 pm

Hi Peggy,

You are my hero, after reading what you have been through over so many years. Thank you for your words of encouragement.
I may have to introduce my new specialist (2nd of April) to this site (if he doesn’t already know about it), surely the best way to learn more about this affliction is to hear it from the afflicted.

Hope you are having a wonderful day!!

Kylie.
Angie

Wednesday, 12th March 2008 at 2:01 am

Peggy

So glad to hear it all went well and you are getting on your feet - a little too quickly by the sound of it! Having keyhole surgery makes so much difference to recovery! It took me weeks rather than days! Mind you every day I actually felt stronger! Take it easy and no running marathons yet!! I can just see you celebrating the end of 15 years of illness and stress somehow!!

Hazel and Kylie
Glad you found the site it really helped me when I couldnt find any info on insulinoma at all. There are not many people on here from the uk but hearing about everyone from all over the place is pretty cool!

Hazel
I didnt have blackouts either but my doctors said it could happen at any time and the symptoms could get more severe. I think my symptoms got a lot worse in the last two years which is why it was identified but Id had symptoms for 10 years or so as far as I could remember! I never realised there was anything wrong with me, just that I had low blood sugar and had to eat sometimes as I felt shaky. I can identify so many more of the symptoms now that they are gone.

Kylie
I was truly terrified of surgery, originally I was going to avoid it anf try the tablets but the tumor was in the head of the pancreas near a vessel, and there was the danger of it getting bigger and surgery not being possible without removing a large part of my pancreas - as it was I was warned i would have to have a whipple operation which scared me to death, luckily I didnt have to and my surgeon only had to remove the tumor not any pancreas. Surgery is such a big thing for us but the surgeons are always so nonchalant and relaxed about it and believe me it is worth it!

Good luck both of you

Angie
Kylie

Wednesday, 12th March 2008 at 8:54 pm

Hi Angie,

Great to hear from the instigator of the site - what a legend you are (and Dr JohnMikel as well, of course)!!

Everyone’s stories and support has given me back my confidence to get back out there and demand some answers - Look out world, Kylie is on the rampage.

Hazel,
As my closest neighbour, I’ll let you know what I find out about Specialists and Surgeons over here in Oz (it may be a closer option for you).

Best of luck to all those who are on the path to recovery, hopefully Hazel & I will be on the same path in the not too distant future.

Keep on smiling!!

Kylie.
Hazel

Wednesday, 12th March 2008 at 9:24 pm

Hi there Kylie,

I hope your visit to the new specialist goes well and that he can finally help you to get well. I’d love it if you’d let me know anything you can about the good insulinoma doctors in Australia as it would be so much closer. Thank you for thinking of me and good luck for April 2nd.

Hazel.
Kylie

Thursday, 13th March 2008 at 1:57 am

No Probs, Hazel.

Looks like you & I are the start of the Southern Hemisphere Club.

I will let you know when I know anything more.

Kylie.
Angie

Thursday, 13th March 2008 at 3:32 am

Kylie

You did make me laugh - a legend!!! Its the people who replied to me that are the legends!!!
I cried when Helen replied and she was only “up the road” in Brentwood! Essex. She had been through it with the same doctor and the same surgeon so she helped me so much.

When I found the site with no comments on at all I really didnt expect to be still writing on it in a years time. Id been trawling the net trying to find information on insulinoma and all I could find was info and stories about dogs or ferrets!

My experience with the NHS in UK is very different to the way things are done in the US and probably NZ and AUS but it does help to know what other surgeons are recommending or doing! My uncle is a doctor in Perth WA and he sent me some info on a study which was interesting - a bit technical tho!

One bit of advise which everyone will agree on - find a doctor and surgeon who really know their stuff on insulinoma, ask them how many they have done and their success - ask them if any have regrown after surgery. Can they and do they do laparoscopy as its so much better for recovery - mine didnt, he needed to get right in!! And have I a scar to prove it! (Actually its fantastic even tho its 9 inches across its very pale and neat - Im waiting for someone to ask so I can say Ive been bitten by a shark!)

Anyway if there is anything you need to ask however stupid we are all here to try and help offer any advice.

Would a crocodile bite be any more convincing?

Good luck!

Angie
Kylie

Saturday, 15th March 2008 at 4:32 pm

Hi Angie,

It is a small world. I have to travel to Perth to see any specialist, it is about 600 km away (375 miles, doesn’t sound that far in miles). Wouldn’t it be funny if I ended up with your uncle?

After reading through the experiences some of you have had with NHS, I realise how lucky I am. We have quite a good system in Aust, especially if you have Private Health Insurance, just nominate who you want to see & most of the cost is covered.

I think finding someone with a lot of experience in insulinoma is going to be the tricky part. Working on the theory of 4 in a milllion having it, means there should be about 8 of us in WA, and 84 in the whole of Australia.

I agree, laparoscopy would be better, especially since I am HOPING that surgery may reverse my early menopause & I may be able to get pregnant (maybe a little late at 37/38).

Shark bite would definately be more convincing down here on the south coast, we have plenty of very “friendly” White Pointers. Only have crocodiles right up the top, the only time I have ever seen one is in a zoo (mind you, I’ve never seen a koala either).

Must go now & check my cows (a farmers work is never done).

Hope you are all having a wonderful day!!

Kylie.
Jane

Saturday, 15th March 2008 at 5:56 pm

Hi Kylie,

Think you’ve got mixed up with USA health system and British health system. I’m in Britain and the NHS could not have done more. From the swift diagnosis (after being admitted in a state of unconsciousness they had me X Rayed and CT scanned at 3 am; opened the scanner up especially), to being referred to a surgeon who had removed a few insulinomas before in the Midlands. And they are keeping an eye on me for 2-3 years both in my home town and at QE in Birmingham. And all free! However we still don’t have much sun!!! Good luck.

Jane
Kylie

Saturday, 15th March 2008 at 6:22 pm

Sorry Jane,

I do tend to get confused quite easily, thank you for clearing that up for me.

Hope things are still going well for you (just went back & checked your blogs).

Yes, we have plenty of sun at the moment, but if you have any spare rain could you please send it on over.

Kylie.
Angie

Sunday, 16th March 2008 at 6:04 am

Jane

I must agree with you, the care I received from the NHS couldnt have been better when dealing with my diagnosis. My doctor picked it up from my blood tests - when i complained of feeling tired all the time, then talking through my history. She had trained at Barts so was immediately interested. I was referred to my local hospital within the week and they transferred me to Barts as they did not have the sufficient experience to deal with it. From diagnosis by my doctor in may, all the tests and scans were done and I was seeing a surgeon by october. My op was the following february. I thought that was pretty good going for the UK.

My stay in hospital however after the op had a lot to be desired and thats where you see the flaws in the NHS - the staff were just up against it all the time.

Kylie
My uncle wasnt the specialist but a colleague of his, but it still would be funny! Ive tried to find the article on line but there is nothing there. I think the review is by “F JOHN SERVICE MD PHD” its just called “Insulinoma” Feb 2006. I doubt this will help much but keep a look out for his name.

By the way we have plenty of rain, and wind and nasty cold weather and you are welcome to all of it!! Just send some sun!

Peggy
How are you doing?

Best to all

Angie
Janet

Sunday, 16th March 2008 at 10:24 am

Hi,
I had an insulinoma removed when I was 17. It was exremeley unpleaant, I was diagnosed with epilepsy and I thought I was going mad. I am now 52 and have a reoccurance, although it has not been located but my chemistry confirm diagnosis. I take a lot of diazoxide which does help, but it doesn’t iradicate symptons completely.
Having spent a large part of my life with very low blood sugar it is nice to read the posts of others who know exactly what this feels like. Good luck to all.

Janet
Michelle

Monday, 17th March 2008 at 2:36 am

I am pretty certain my mum has an insulinoma but getting it diagnosed is another matter. Symptoms started about 12 years ago and she was diagnosed with epilepsy after a series of fits but I didn’t believe the diagnosis. She was admitted to hospital with a suspected stroke after going comatose then arousing with slurred speech but after she’d spent ages in the hospital corridor I got her a fizzy drink and she came round properly. Her blood sugar regularly drops below 2.0 and has been down below what the monitor can register but the glucose test they did showed nothing. A CT scan showed a small lesion on the pancreas but they said at 72 they wouldnt operate to find out what it was because of her age. I’m sick with worry that she’ll go in to coma when I’m not around. One thing that confuses me though is that everything I’ve read on insulinomas talks about hunger as a symptom, despite having put on lots of weight she has no appetite at all. Anyone else have a lack of appetite?
Thanks, Michelle
celina

Monday, 17th March 2008 at 5:30 am

Hi im from the uk near brighton,my story is quite a saga so i will try to keep it short.It started in may of 2006 at gatwick airport i was taken ill and instead of majorca i ended up in hospital,they discharged me later that evening thinking i had probably been sick and hyper-ventilated causing confusion and loss of feeling and speach.Two weeks later i ended up in brighton hospital for two weeks having test after test including a lumber puncture that showed a high protein level so was told i had viral encephilitas and was put under the care of a neurologist.

Nearly two years later and further episodes and tests i am now being refered to a endochrinologyst i was wondering if anyone could tell me what to expect when i see them the neuro mentioned a 72 hour fasting test he also said that nothing would have shown up on the many blood tests i have had in the past.
Laura

Thursday, 20th March 2008 at 8:55 am

celina, the 72 hour fast proves that your blood sugar will continue to drop if you do not eat. It also proves that you are not taking insulin to artifically make your blood sugar drop. Just having low blood sugar does not mean insulinoma. But if your blood sugar continues to drop, then it is extremely likely that you have an insulinoma. If you read above, many people share their 72 hour fast experiences. They rarely last more than a couple of hours and it is really the easiest of all teh tests you will go thru. good luck!

Michelle, I was never hungry when I had my insulinoma. Quite the opposite actually, I was completely sick of food because I had to eat so often. It is very major surgery, and I can understand not wanting to perform it on someone elderly, but if she is in good health, I would guess someone would do it for you. As for her going forward without surgery, eating every 2 hours is the key, even if she is not hungry. Does she have a blood glucose monitor so she can monitor herself? I used to check my blood 8-10 times per day which was crazy, but it does work. good luck!!

Laura
Kim

Thursday, 20th March 2008 at 9:26 am

Michelle,

When I first started noticing the symptoms of my insulinoma, hunger and shakiness were the predominant signs that I was crashing. Over time the symptoms changed and hunger was not one of them. I would get dizzy and confused instead. It may have been that I was so tired of having to eat all the time as Laura mentioned.
Susan

Thursday, 20th March 2008 at 3:20 pm

Michelle,

My 84 year old mother was operated on successfully to remove an isulinoma last November. We are convinced she wouldn’t have made it past Christmas without surgery because she was in such bad shape. She would have lapses into semi conciousness if she didn’t eat a peanut butter sandwich in the middle of the night, for example, and she had gained 50 pounds which aggravated her heart problems. She was never hungry, by the way. She, too had been discouraged from surgery because of her age, but all the tests pointed toward insulinoma even though it didn’t show up on the CT. Dr. Norton at Stanford Hospital was confident that she needed surgery and found and removed the tumor during surgery. She had an epidural in place before surgery and it was kept in for four or five days thereafter. She never even had bad pain and was up and walking and eating lightly in less than a week. She has a scar going all the way across her abdomen!! From what I read here, she had an easier time of it in recovery than some of the much younger patients. That’s not to say everyone should expect that kind of recovery, but it should be of encouragement to some. We are thankful for an excellent surgeon and many prayers.

My mother has been given her life back. She has lost over forty pounds and is back to driving in the mornings without having to first eat a large quantity of carbs to elevate her blood sugar to an acceptable level. As we speak, she is now happily hosting a bridge party at her home. At her last bridge event before the surgery, she lapsed into semi conciousness and her friends had to call an ambulance. Needless to say, they, too are thrilled to see her back to her old self.

With an experienced surgeon, surgery can be very effective for elderly people in otherwise good health. There are quite a few tests which can point to a diagnosis of this illness, but sometimes the actual tumor can’t be found until surgery using means only available at that time. I would only go with a very experienced surgeon with a stellar track record, however. My best wishe for your mom!
celina

Friday, 11th April 2008 at 8:15 am

ANGIE
Hi,i was just wondering if you had to go to london for your fasting test or could they do this in brighton.Also who did you see first of all to get the ball rolling im still waiting for an appointment with the endo and after having two years of illness and tests i cant wait to see them.
EVERYONE
I have foundn that i cannot tolerate alcahol since not being well,also things seemed to come to light after having my gall blader removed also my daughter is seeing a endo with regard to pcos i was wondering if anyone else could relate to this
many thanks,
celina.
celina

Friday, 11th April 2008 at 8:15 am

ANGIE
Hi,i was just wondering if you had to go to london for your fasting test or could they do this in brighton.Also who did you see first of all to get the ball rolling im still waiting for an appointment with the endo and after having two years of illness and tests i cant wait to see them.
EVERYONE
I have foundn that i cannot tolerate alcahol since not being well,also things seemed to come to light after having my gall blader removed also my daughter is seeing a endo with regard to pcos i was wondering if anyone else could relate to this
many thanks,
celina.
pamela

Sunday, 13th April 2008 at 12:17 am

Hello everyone.
I am so happy and thankful to have found this site! I am 36 years old..and live in Dallas texas. I am in the beginning stages of finding out if what i have is an insulinoma. (although after reading this site i am sure i do!) About 5 years ago is when my symptoms began. My life has been a scary ride ever since! Im married with two little girls, ages 2 and 4 and the scariest part of this whole disease for me is my childrens safety! I cannot even count how many times the paramedics has been to my house..once on the road for a hypo attack while driving…and once at the grocery store when i was with my daughter. It totally traumatized her at the time!! My blood sugar averages in the 40s with the lows in the 30s. through the years ive gotten better at recognizing the symptoms….confussion, shakiness, cold or sweating,…drunken behavior. I have had thee endocronologists, and i do not know how many dieticians….finally a endocronologists listened to me about my crazy sugar drops and did the much needed tests..
i feel for everyone who suffers this disease. it has trully robbed me of leading a normal life. I am in constant fear! everyone here sound so brave and strong… i know it will help me for the road that lies ahead! On friday april 11,08 an mri showed a 1.4 lesion in the head of the pancreas. I have a consultation for my endoscopic ultrasound on monday the 14. what does that mean to have the lesion on the head of the pancreas? Is 1.4 big? What happens at a endoscope ultrasound? Thank you! Pamela
Gayle

Sunday, 13th April 2008 at 7:57 am

Pamela,
I too found this web site shortly before being diagnosed and I remember how relieved I was to find people with the same problems. The endoscopic ultrasound was the easiest of all the tests I had done, (except for the fasting part). In fact when I woke up from the test I wasn’t convinced that the procedure had even been done! I had 2 CT scans, an ultrasound and also an MRI. None of these test located the insulinoma. Finally the endo ultrasound located a 1.5 cm insulinoma on the lower part of the neck of my pancreas. During the endo ultrasound a tube is inserted down the throat with a tiny camera attached. A biopsy was done on the insulinoma during this procedure with a very fine needle. I believe the location of the tumor determines how invasive the surgery will be. As I said, mine was on the neck which allowed me to have laparoscopic surgery rather than open surgery. I’m actually going back for another endo ultrasound in the next couple of weeks. My surgery was in July and during my followup CT this past January a “questionable lower density area” was found on the neck of my pancreas. My surgeon feels this most likely is post surgical changes rather than recurrence. The endo ultrasound will tell me for sure.
I got a lot of information before my surgery from http://www.webmd.com. Hope this helps you and let me know if you have any further questions. Good luck!
Susie

Sunday, 13th April 2008 at 8:04 am

To Pamela,
I will tell you what a ultrasound endoscope is. I have had two of them. They put you to sleep and they stick the endoscope down you and look around and take pictures of your pancreas. This is how they found mine. Now whatever they do, do not let them do a biospy of the insulinoma. I had this done on the first endoscope I had. When the surgeon opened me up, he could not find the insulinoma.Your throat will be sore for a couple of days, but the procedure is painless. Your lucky they also found it on the MRI. I know alot of insulinomas are found on the head of the pancreas. Just make sure you have a great surgeon that has performed this operation numerous times.
I wish you all the luck in the world and yes this in a terrible thing to have to deal with.
But at least its curable and once the damn thing is out of you, you will be back to normal.
Susie
Gayle

Sunday, 13th April 2008 at 8:13 am

Susie,
How did doing a biopsy prevent the surgeon from finding your insulinoma?
Gayle

Sunday, 13th April 2008 at 8:36 am

Pamela,
I too found this web site shortly before being diagnosed and I remember how relieved I was to find people with the same problems. The endoscopic ultrasound was the easiest of all the tests I had done, (except for the fasting part). In fact when I woke up from the test I wasn’t convinced that the procedure had even been done! I had 2 CT scans, an ultrasound and also an MRI. None of these test located the insulinoma. Finally the endo ultrasound located a 1.5 cm insulinoma on the lower part of the neck of my pancreas. During the endo ultrasound a tube is inserted down the throat with a tiny camera attached. A biopsy was done on the insulinoma during this procedure with a very fine needle. I believe the location of the tumor determines how invasive the surgery will be. As I said, mine was on the neck which allowed me to have laparoscopic surgery rather than open surgery. I’m actually going back for another endo ultrasound in the next couple of weeks. My surgery was in July and during my followup CT this past January a “questionable lower density area” was found on the neck of my pancreas. My surgeon feels this most likely is post surgical changes rather than recurrence. The endo ultrasound will tell me for sure.
I got a lot of information before my surgery from http://www.webmd.com. Hope this helps you and let me know if you have any further questions. Good luck!
Gayle

Sunday, 13th April 2008 at 8:39 am

Susie,
How did the endo ultrasound prevent your surgeon from finding the insulinoma during surgery? It’s my understanding that the biopsy helps determine that it is an insulinoma.
KIM

Sunday, 13th April 2008 at 9:44 am

Hi Susan,

Welcome! Consider yourself lucky to have found the lesion so quickly (if that is indeed the insulinoma). I haven’t heard of many people having biopsies. I echo what someone else said - make sure that you have a teamn that is experienced with insulinomas. That is very important. You will have to fast for the EU and it helps if the staff is familiar withinsulinomas so that they’ll be prepared for the likelihood of your crashing. I had a CT scan and an EU at my hospital in Vermont. They found nothing so I decided to take it to the big guys down at Johns Hopkins. I had an octreotide scan and another CT scan with a high octane turbo scanner. It was debated amongst three top radiologists what they saw and it was decided to be an insulinoma.
Like you I have children and animals as well to take care of alone. It was very stressful always feeling like I couldn’t handle it. Things are so much better now although I am experiencing a bit of anxiety when faced with situations where I previously had a bad crash. That is just me!
Keep asking questions. There is a wealth of knowledge and experience here. I don’t know what I would have done without this site!
Good luck - we are with you!

Kim
KIM

Sunday, 13th April 2008 at 9:49 am

Woops! I did it again! My previous message was meant for Pamela! Sorry!
Susie

Sunday, 13th April 2008 at 10:10 am

Susan,

I think you may have of read my response incorrectly.

The endo was performed in February 2007 and helped them find the insulinoma in the head of the pancreas, but the accompanying biopsy led to nothing but grief. The insulinoma was so small (1.3 cm) and they poked it so many times that it grealy inflamed the whole area and reduced the size of the tumor. When the surgeon went in, he couldn’t find it and had to take out the portion of the pancreas he thought it was in.

It seemed like my hypo problem was solved, but all of the symptoms came back a few months later. They took another endo this February but my surgeon ordered that they not do a biopsy this time. After that, I had to have a SECOND major surgery (a full Whipple procedure) to take care of the insulinoma once and for all. So to save this from happening to anyone else, my personal experience suggests that you not have a biopsy performed when you have the endo done, but I’m not a trained doctor either. Just relating my own personal experience (or should I say nightmare!).
Laura

Sunday, 13th April 2008 at 12:44 pm

Pamela,

Welcome for what it is worth, at least it is good to know you are not crazy and many of us share the same condition. I had the same types of experiences with my kids before my surgery. At the time of my surgery, they were 4, 2, and almost 1. I had a very strick rule for the 4 months prior to my operation that I would not be alone with the kids no matter what. There were just too many scary experiences. It is one thing to hurt yourself when you have low blood sugar, but how would you ever survive emotionally if you hurt your kids? It was way too much of a risk for me to take. The last time I tried, I was driving with all 3 and all the sudden I could not see clearly at all, in fact I had to take my glasses off (Which I need for driving) to see the stripes on the highway. I ended up pulling over and sitting on the side of the road until my sister could come to get me. I shudder to think what might have happened…

As for the Ultrasound, I agree with what everyone else has said. Though, if your surgeon wants to do a biopsy, I wouold question his experience with insulinomas. Did you do a 72 hour fast? If you did and your MRI showed a tumor, the odds of the tumor being cancerous are so low, it seems like a very unnecessary procedure. In fact, after surgery I asked my surgeon when I needed to follow up and what tests I needed to have periodically, and the answer was NONE! It is incredible. Something that can ruin your life for so long, is just cured in one operation. Very, very crazy!

As for your tumor being on the head of the pancreas, that means the part where the pancreas is attached to the intestine. As far as good or bad placement, laproscopic will probably be out for you, but mine was located there and my surgeon was able to enucleate the tumor without the need for a whipple. This really ties in to the skill of your surgeon. You need to make sure his specialty is the pancreas. How long has he been doing it? Make sure you are very confident that he is the one, and if you are not there, get another opinion. There is no more important decision than who does the operation.

Good Luck!

Laura
pamela

Sunday, 13th April 2008 at 8:30 pm

Gale,
i will pray for you and good results on your endo ultrasound, i am sure you surgeon is right about it being past surgical changes! I will definitely use the webmed for information. Thank you for your response and help so quickly! Since your surgery in July you no longer have low blood sugar? Do you fell mentally sharper?
Susie
Hello given your advice about the biopsy, i definitely will discuss the options with the docters. Maybe another test will prove the insulinoma rather than aggravating the tumor with a biopsy?

Kim
i was reading about John Hopkins hospital..who was your docter? i will try and get the best docter possible? does anyone know if Dallas has any? i read Houston does. You all have so much information my brain is smoking!! Not because i need a emergency orange juice or dr. pepper, but because i keep reading in excitement of having you all to talk to!! After i had my first daughter Lily, and pregnant with Sarah, things just got to dangerous and scary for me and my husband with me being alone..so we hired a live in-nanny. That is truly one of our blessings during this whole sickness. She has been with us for 2 and half years..and she has me pinpointed from the second my sugar drops. She brings me juice and toast and says “I think you need this!” How old are your children? Did they used to help you when you had a crash? Did you ever deny that you were having a low blood sugar to people when they would try and help? I go completly nuts…and refuse help..ive never understood why. Besides the fact that my sugar is probably about 35…if not lower!!
Laura,
Im glad you are healed! What an inspiration for me to know this! I cant wait for the day i can have a salad for lunch..work out..play with my children..all without crashing! I used to love food…its such a chore now..and im always so full! If and when i am ever cured..i dont think i’ll ever drink another orange juice…..
take care…thank you all!
Pamela
Kim

Monday, 14th April 2008 at 5:55 am

Pamela

My surgeon was Dr. John Cameron. He is one of the most experienced at the Whipple procedure. Johns Hopkins was a wonderful hospital - very organized, very professional. My kids are teenagers. This past summer they sometimes had to take over the driving for me, also help me with dinner because just organizing the various components, when to start doing what would be too much for me! The low blood sugar definitely affected my brain in a way that I would sort of deny what was happening. One day I was out weed wacking and when I reached that 1/2 hour mark it felt as though the weed wacker was trying to push me over. I started having a battle with the thing! After a while it “succeeded” in knocking me to the ground. Then I finally gave up and realized what had been happening. The next day when I went out to look at my “work” the ground was covered with slash marks! No more weed wacking after that!
Angie

Monday, 14th April 2008 at 6:39 am

Hi Celina

Sorry to not replied earlier but have been on holiday!

You were asking about the 72 hr test being done in Brighton. It would very much depend if they have experience in dealing with this particular test. My referral was to my local hospital on my request rather than straight to St Bartholomew as i didnt want to waste their time if it wasnt anything serious. As it happened Whipps Cross Hospital Walthamstow decided they did not have the same experience as Barts in London would so I was sent on straight away. at this point I had no idea just how serious everyhting was. I am based in East London so was very local to Barts hospital anyway. Barts do it all the time so its very routine fort he staff there.

Insulinoma is often so rare that not many hospitals are fully aware of what it is. Bear in mind when I went for my actual op the junior doctor told me I d be put on an insulin drip overnight! She was a bit put out when I said o no you wont! you will put me in a coma! (or words to that effect!) She then went away and read my notes!!!!

My 72 hr fast result was slower than many people on here. I started very low anyway (2.2) I started my fast at 6pm after a meal in hospital at 5. The following morning my blood sugar went up (4.something) which threw everyone.We think is is because my body was so used to it and dealing with it all the time. However after dreaming about biscuits, my bloods went back down the following night to 1.6. It took 30 hours. They took blood every 6 hours and did the bm every four with obs, unless I thought Id dropped.

After that I stayed for MRI and CT scans, and went on and on from there. My outlook was the more tests they did the better informed they would be.

I read everything I could on the subject and asked as many questions as i could so I knew exactly what should have been happening and what they were doing. Keep on the ball as certain things can go amiss.

Let me know if there is anything else you need to know.

Good Luck
Angie
Kylie

Friday, 18th April 2008 at 8:05 pm

Hi all, I’m back.

Nothing really exciting to report. Saw new specialist, contrary to last one, he believes I actually have reactive hypo, therefore he didn’t ask me to sit the 72hr fast. So now I am quite confused (even more so than usual). I was congratulated on my management of my hypo over the last 15 yrs & told to keep it up. He has promised to send me a written report with my blood results, so I will just have to be patient for now.

Hazel

Sorry, I didn’t get a chance to ask about insulinoma specialists in Oz. Have you checked out the teaching hospitals in NZ? I’m sure they will have the best info.

Best of luck to everyone out there!!

Kylie.

oh PS. It’s raining, YAY!!
Hazel

Sunday, 20th April 2008 at 4:11 am

Kylie,

Thank you for thinking of me. Don’t worry about not finding any specialists for me, you need to focus on getting yourself well first. Best of luck for the treatment of the reactive hypoglycemia. I do hope your specialist is correct and can help you improve. Did your specialist discuss what the treatment of reactive hypoglycemia is? It would be interesting to know.

Great news about the rain!! I know how much you guys needed it over there.

Hazel.
Megan

Tuesday, 22nd April 2008 at 7:31 am

I am new to this website. I must say I am mighty relieved to find people like me. I have recently begun the diagnostic testing for insulinoma. I have had many misdiagnosis in the past so I am trying not to get to excited that this could be the answer. I have suffered with Hypoglycemia and it’s effects for 7.5 years. I have Poly Cystic Ovarian Syndrom and I also have a constantly elevated prolactin level. I had my ct scan yesterday, I am having blood tests today and I am also going to have a endoscopy. I was wondering how other Hypoglycemics kept there blood sugar stable during the endoscopy. I follow an insulin resistance diet. I know if I have to fast for 5 hours before the test and during the test my blood sugar will be to low . How did you guys solve this problem? Any advice would be appreciated! I hope you all find great doctors and are well soon!!!
Kylie

Thursday, 24th April 2008 at 8:54 pm

Hi Hazel,

I’m afraid reactive hypoglycemia is very uninteresting. Apparently only practical treatment is diet, which I have managed pretty well over the years. The only extra tweeking is to cut out alcohol & caffeine (I live for my cup of coffee in the morning). Apart from that I will just have live with being a little bit special. The big upside is that I no longer have to worry about falling into a coma.

So good luck with your own journey, I will be here to help out in anyway if you need.

Hope everyone out there is having a wonderful day!

Kylie.
Penny

Monday, 28th April 2008 at 5:01 pm

Megan,
When I had my endoscopy, I was definitely concerned too about my blood sugar! My endoscopy was in the morning at 10:00 am. I believe I was supposed to fast from midnight on…ha! I woke up at 4:30 am and had my usual midnight snack…then, when I awoke again in the morning I drank juice periodically. My endocrinologist told me i should drink clear juices up until I had to go in and that it wouldn’t be a problem as long as the juices were clear, but not to tell any of the nurses or the doctor who was doing the endoscopy~or else they’d probably tell me I’d have to reschedule. So, that’s what I did! And also, when I got to the hospital I told the nurses right away about my low blood sugar and made it clear that I should be put on a glucose-type IV. So, they checked my blood sugar in the pre-op room a couple times and saw how low it was and hooked me up right away…so, I didn’t have to worry about my blood sugar at all during the endoscopy as they were feeding me sugar through an IV! whoohoo! hope that helps. and I pray your testing gives you some answers!!!!
Penny
pamela

Monday, 28th April 2008 at 10:06 pm

Hello everyone!
i disappeared for a brief time!!I have been busy with some tests and the usual daily activities and errands! It takes so much energy that i just dont have! I went to southwestern medical dallas and saw a docter there i really like…he chose not to do the endoscopy..but to have another ct scan on top of the mri i had from Las coinas Medical center! That too showed a lesion at the head of my pancreas. They also did a blood insuline level test (i think thats what it is called)….that the docter said my insuline levels were off the charts!! So now im waiting to here from the docters so that i can meet with a pancreatic surgeon to see if he will be the one to perform the surgery. My docter said i might be ok for a laproscopic enulcleation because of the location in the head of pancreas. I hope to hear good news on that! Excuse my medical terms…im not sure if im writing all of them correctly!
Kim
How long did you have to stay at John Hopkins hospital? Where was your insulinoma?
It seems like all i do is wait for a test…wait for a docter to call..wait for the next test…its all so exhausting! I hope the surgeons i meet with are experienced and know what they need to know about insulinomas…i really want to stay here close to home for my surgery!
Hi megan,
I was wondering if you had your endoscopy yet and what was the outcome? Anytime i have had to fast after midnight i have lucked out and not had a horrible crash…some days are better than others with my suger. I always had food and my husband along for the tests in case of an emergency! Good luck!!
Goodnight!!
pam
Kim

Tuesday, 29th April 2008 at 10:09 am

Pamela,

Yes, the tests drove me nuts - the waiting, the stress of fasting, waiting for results etc. etc. Yes, it feels like a full time job! I should have gone right to Johns Hopkins and not had any scans or EU done here in vermont. They just don’t have the equipment and expertise - a waste of time and money. Anyways, I had a half days worth of pre-op stuff the day before and then I went in the morning of my surgery and was in for about four more days. Then I went to stay in a hotel in Baltimore for four days. My tumor was on the tail of the pancreas and it was 1.3 cm. The only thing that has been a trial is that they left heavy duty permanent stitches on one of the inside layers and because I have little fat in my stomach area, these stitches literally stick up/out and can be irritating. I would suggest to anyone if they are thin in that area to ask for dissolving stitches! Definitely ask your surgeon about his experience with insulinomas and pancreatic surgery in general. Keep us posted and keep asking questions!!

Kim
Megan

Wednesday, 30th April 2008 at 6:11 pm

Thanks for the info. I just got back from my 72 hour fast. I made it through the first 47. My blood sugars were boucing around like crazy but I coopuldn’t believe it took so long to drop. My doctor took me off Metformin. He wants to see what my blood sugars will be in a few weeks. I’m afraid I will have to do the 72 hour fast again. My Ct didn’t show anything and I haven’t had my endoscopy yet. My doctor said to hold on until I get my blood work from my fast back. My original blood test did show elevated insulin and C=peptide levels. I just don’t know what to think. After 7 and a half years, I’m just hoping for a real, accurate diagnosis. I send you all good wishes and lots of prayers.
xoxoxo
Megan
P.S. Has anyone elso had periods where their blood sugar was much better. The last month mine has been in what I would call the usuall range with not as many lows. I’m starting to think insulinoma may not be the right answer for me. I did have la level of 29 during February. I passed out and had a siezure! yuck!
pamela

Wednesday, 30th April 2008 at 9:45 pm

Finally i heard from my docter and i will meet with the surgeons on tuesday to see what options i have for my surgery! The docter said they would put me on Diazoxide until i can figure out when and who will do my surgery! Is that medication been helpful to anyone?
Megan I had a ct scan that came up negative but my blood work showed the same results yours did….elevated insuline levels and c-peptide levels!! it wasnt until a mri that they found a lesion on the head of my pancreas. I also had a sugar level of 29 while at the grocery store with my toddler…two years ago…the paramedics had to come and hold me down because i was acting like a crazey person and put an i.v with sugar in me!! It was so awful! To think that happened while i had my baby with me!!! Now i dont go anywhere alone with my girls without someone with me! Some weeks my sugars would be doing so well i thought “oh maybe my hypoglycimia is getting better!” then something would happen and there i was with people standing over me trying to pour orange juice down my throat! My sugars also get bad during the time of the month…and anytime stress or excitement is going on! Shopping is not even fun for me!! You have to be persistent with your docters…maybe ask for a mri. I did not have the 72 hr fast, nor the endoscopy….but one of these tests will give you answers! I pray for a fast answer for you so that you can move forward. For me having an answer has helped my mental state a-lot!!! What do your sugars average?
Kim with your laproscope were you stitches on the outside as well as on the inside? Do you have scarring? I have little fat in the belly area as well…overall hopefully that will make the surgery easier. you think?
pamela

Wednesday, 30th April 2008 at 9:48 pm

im sorry i forgot to ask….did or does anyone have constant headaches?!
pam
Brendan

Wednesday, 30th April 2008 at 10:15 pm

Pam,

I did have frequent migraines - typically they would happen after vigorous exercise when my blood sugar would drop into the low 30s. I’d get the normal migraine symptoms of an aura in my vision (followed, of course, by head-splitting pain), but they were treatable using normal anti-migraine medications. Post-surgery, I’ve had far fewer.

With my laparoscopic surgery, I only had internal stitches. I was left with several fairly small scars (each about a half-inch).

Brendan
Brendan

Wednesday, 30th April 2008 at 10:15 pm

Pam,

I did have frequent migraines - typically they would happen after vigorous exercise when my blood sugar would drop into the low 30s. I’d get the normal migraine symptoms of an aura in my vision (followed, of course, by head-splitting pain), but they were treatable using normal anti-migraine medications. Post-surgery, I’ve had far fewer.

With my laparoscopic surgery, I only had internal stitches. I was left with several fairly small scars (each about a half-inch).

Brendan
Janet

Thursday, 1st May 2008 at 5:43 am

Hello again!

For Pamea-

I have been taking 650mg of diazoxide for 10 years and yes it is very helpful. I have a recurrent insulinoma . having had surgery to have the first one removed , plus about a third of my pancreas, my spleen and appendix! The diazoxide does not get rid of all the hypos produced by my condition, but it does make life much better, improving symptons so that I can live a reasonable life. I have to take a high dose as my body has seemed to have got used to it. It does have drawbacks as it causes excess body hair and I have to take a water tablet to counteract the water retention it causes., but compared to horrible hypos that are dangerous and are so life changing, having side effects are insignificant. Sometimes my blood levels were down as far as 0.9on before medication. My first insulinoma was discovered when I finally went into a coma on a bus, it was .4!
Diazoxide is very helful and has improved my life beyond recogniton.

Janet
Janet

Thursday, 1st May 2008 at 5:43 am

Hello again!

For Pamea-

I have been taking 650mg of diazoxide for 10 years and yes it is very helpful. I have a recurrent insulinoma . having had surgery to have the first one removed , plus about a third of my pancreas, my spleen and appendix! The diazoxide does not get rid of all the hypos produced by my condition, but it does make life much better, improving symptons so that I can live a reasonable life. I have to take a high dose as my body has seemed to have got used to it. It does have drawbacks as it causes excess body hair and I have to take a water tablet to counteract the water retention it causes., but compared to horrible hypos that are dangerous and are so life changing, having side effects are insignificant. Sometimes my blood levels were down as far as 0.9on before medication. My first insulinoma was discovered when I finally went into a coma on a bus, it was .4!
Diazoxide is very helful and has improved my life beyond recogniton.

Janet
Megan

Thursday, 1st May 2008 at 6:37 am

Pamela,
Thanks for all the info. My blood sugars have normalized in the past month or so. I am averaging about 81. I can’t believe it! In february I was averaging 55-65. It just seems so weird. I do know in the past seven years I have had a few months where I felt almost normal. I was even able to drive. Unfortunately my lows always returned. I wonder if my blood sugar had also stabilized during those times but I wasn’t even checking then. That was before I had a doctor with a clue! I also have had elevated calcium levels once or twice in the past. I also have constantly elevated prolactin leves. I have been on a medication for this for about a year but I still have some breat milk. ( I breast fed my son almost 10 years ago). I started having fainting spells after I quit nursing and times where I would be disoriented, shaking, sweating(all classic hypo signs) but I didn’t get really sick til about a year later. I spent four months not being able to pick up my child, in bed all day. Every time I stould up it seemed like I would pass out. I’ve learned a lot over the years. I’m just glad to have a group to share my experiences wioth that understands how serious hyopo episodes can be.
Megan
pamela

Thursday, 1st May 2008 at 6:22 pm

Brendan,
thanks for the info! I guess i should ask for some migraine medicine! sometimes i will get a headache, have it all day,….go to bed and wake up with it!! After a really bad low blood sugar i have gotten a horrible splitting headache..sometimes so bad ill throw up! I guess it is the hypo causing these headaches?`
Janet
is it not possible to remove the recurrent insulinoma? When you say your sugars were o.9 and .4 im not sure of those type of readings. However you read it…going into a coma shows everyone how scary it is to have this disease!
Megan,
when i breast fed my first daughter it would make me really sick with hypoglycemia…..by the time i had my second daughter..22 months later there was no possible way i could have breast fed her…for my hpoglycemia had gotten so bad!! your comment about “having a doctor with a clue”….made me laugh because it just seems like the regular endocrinologists have absolutely no knowledge or experience with hypoglycemia and insulinomas! For 3 years i had a endocrinologist blame my hypoglycemia on my diet and when i got my medical records from her office i read over them, and they pretty much were her making accusations that i was bulimic! She had me so brain washed! no matter what diet she gave me..no matter how hard i tried i always thought my low-blood sugars were my fault. because of what i did or did not eat!! If and when this is hopefully over…she will be getting the full report!!

pamela
Janet

Friday, 2nd May 2008 at 6:31 am

Hi again.

Apparently as I have already major surgery on my pancreas it was felt by the surgeon that further surgery would be extremeley complicated and he told me the risks would be much greater, so the coward I am, after already going through so much, I opted to have the diazoxide until I am ready to take the risk, I probably will have to have all of my pancreas removed so I am very frightend and have stayed with the medication.
.9 and .4 are the british reading of the blood sugars, I will try and find out how that translates to your readings. I just know it is really dangerously low.
I just wanted to reassure you that diazoxide is really helpful medication.
Best of luck to you all anyway, I understand everything that you are all going through.

Janet
pamela

Friday, 2nd May 2008 at 10:46 pm

Janet hello again!
my goodness you have been through so much!!! we all have in one way or another! A coward is the last word i would have thought of you to have sounded like! So your talking a pancreatic transplant? I was reading a little on that.It seems they have come a long long way with all of that! do you think someday you might go through with it? Im glad to hear about the diazoxide! boy that stuff insnt cheap. what happens to those who carry bad or no insurance!! GEEZ! crazey! Tues. when i meet with the surgeons they will also show me how to administer it! Will i gain a-lot of weight?
I was reading on the comments from last year…(so much helpful info!!!) and i read a comment from Peggy..and then a reply from Susie about how if Peggy had money she would love to throw a party for all of us with insulinoma..so that we could all meet!! Susie said she thought that sounded pretty cool! Well i think it sounds really cool. Maybe make some good of it…draw awareness….raise money..have some sort of benefit or something! Being here in dallas i promise i could make it work…my husband is a developer and has lots of connections. How many of us are as of now on this web-site? If me and my husband were able to cover the expenses…even those of you who could not afford to travel…how many of you would be interested? I promise im not having low-blood sugar…just sounded fun and beneficial! All kind of other people come together..cancer…diabeties……why not our small group!!!?
It wont hurt my feelings if you want to write back and tell me im nuts…or that i need to go drink some juice but i would like to hear your thoughts!!
pam
Angie

Saturday, 3rd May 2008 at 5:36 am

Janet
This is from one of my earlier posts which may be helpful to everyone to compare.

Ive been trying to work out all the levels everyone quotes.
I cant remember how I did it but its a guide!

(0.6 mmol/L = 10 mg/dL - ie 1.8 mmol/L = 30 mg/dL)
Are you impressed!!!!!

50 would be ‘3′ (UK)
2.5 which is roughly 40.
Anything lower than 50 is considered unusual and below 30 is serious.
In the Uk if you go below 1 you are probably in a coma! which would be less than 20.

When I had my 72 hr test they stopped it at 1.6 which would be 26 ish but I went in at 36 which was low anyway. (These figures are approximate!)

Angie
Angie

Saturday, 3rd May 2008 at 5:54 am

Pamela

Ill come!!!

Ive been writing on here since the beginning and would love to meet all the people who have been on the site!! There arent many of us in the UK compared to the US!
We could invite our surgeons and doctors (make them pay for themselves tho!) Ha Ha!

I was on the diazoxide for 8 months altogether. Diazoxide shouldnt make you gain weight but I suffered from water retention so also had to be on diuretics! My legs were more uncomfortable being swollen and puffy than I really benefited from the drugs. It helped my blood sugar levels but not really that well. I also had increased hair growth all over my body - I had a real covering of “down” and hairy toes!! luckily Im fair. It all dropped off and Im back to normal after I had my op and came off of it! Even my toes are back to normal!

One of the reasons I went for surgery was because I had only been taking diazoxide for a short time and had such reactions so soon. They suggested that due to my age (a young 40!) it would only get worse as I got older! They also suggested the diazoxide could stop being effective at all! Whether thats the same for everyone I dont know.

Janet

I think Id stay with the medication rather than face the surgery for complete pancreas removal! You are no coward!!

Anyway, as I never turn down an invitation, bring on the PARTY!!!

Best wishes everyone!

AngieX
Kim

Saturday, 3rd May 2008 at 7:55 am

Pam,

You may need to drink some juice but I LOVE the idea of a party … and a benefit of sorts - all the better! It would be so neat to meet everyone. I am worried about Homa because she hasn’t “appeared” since before her operation and she was engaged to be married etc. etc.

Janet,

Ditti that - You are no coward!!!!!!

Kim
Susie

Saturday, 3rd May 2008 at 10:04 am

Hi Pamela,
I would be very interested in attending a party for all of us insulinoma people. I live in San Diego. I ended up having two surgeries. The first one the surgeons thought they got it all out but they didn’t. So I had a whipple done this past February. It was a horrible recovery, and I’m still recovering, just walked 1 1/2 miles. I still can’t sleep on my side and I have lost 30 lbs. But at least I don’t have anymore blood sugar problems. My blood sugar would go down to 30 and I would only feel sleepy. My body got so used to having low blood sugar. My surgeon has done the most whipples in the entire country.
His specialty is repeat surgeries done on the pancreas.
Peggy

Saturday, 3rd May 2008 at 10:20 am

Hey Pam,

Go for it!
I’ve always wanted to get us insulinomies together. I still wish I could throw a party, especially now that I have more energy and mental clarity. (I live by the beach if anyone wants to come to California to vacation this summer!)
I can relate to everything you’ve said Pam. This disease is so life changing. I like the idea of raising awareness somehow.
My daughter just moved home and is a reporter for three local papers. She just said she would write a press release and send it to the major cities. Even meeting together as a result of the blogs from Jon’s article would probably be of interest. I don’t think I would’ve had the strength to continue the pursuit of treatment if I didn’t have the support from everyone here. Let’s talk!

Sorry I haven’t been on for a while. I’ve been a little overwhelmed with trying to get a life back. I’m doing well though and continue to hold everyone in prayer.

(Don’t worry about gaining weight from the diazoxide Pam. I was on it for years and only weighed 120- I have a lot left if anyone needs it)
Penny

Saturday, 3rd May 2008 at 11:21 am

Pamela,
Just a quick note to tell you I am definitely interested in getting together and meeting all you guys! That would be neat :)
Penny
Janet

Saturday, 3rd May 2008 at 11:49 am

Hi again.

Pamela thanks for the vote of support but I am a coward, after one horrendous op just don’t want to take the chance, Don’t think I would have a transplant, would just have to manage without a pancreas and as that would be extremeley difficult I am sticking with the diazoxide. Fotunately here in the UK the diazoxide is provided free on the national health, for named patient only so I do consider myself extremely lucky, and really feel for you guys having to pay. for this expensive medication, I guess I owe my life to the NHS.
My first insuinoma was at aged 17, having convulsions and other losses of consciousness. It took one year to be diagnosed after eventually fallng into coma on a bus.
Angie, I am extremeley impressed with your conversions; that sound about right. My body has had to live with such low blood sugars since 17, so I can get to 0.9 conscious, but confused and on automatic pilot. After that I black out.
A party is a loveley idea for you who live on the other side of the pond. Really really hope you can all get it together, will wait to hear how you all get on. Its great for me to after all these years to talk with others with similar problems. It has been so isolating, I am so glad I found this site and read your experiences, which have made me feel both comforted, saddned that others also suffer with such a horrid condition, but also thankful for life.
Wishing everyone on here recoveries and comforts. Group hug from me here in Tamworth, Engand to you all.

Janet x
Janet

Saturday, 3rd May 2008 at 11:49 am

Hi again.

Pamela thanks for the vote of support but I am a coward, after one horrendous op just don’t want to take the chance, Don’t think I would have a transplant, would just have to manage without a pancreas and as that would be extremeley difficult I am sticking with the diazoxide. Fotunately here in the UK the diazoxide is provided free on the national health, for named patient only so I do consider myself extremely lucky, and really feel for you guys having to pay. for this expensive medication, I guess I owe my life to the NHS.
My first insuinoma was at aged 17, having convulsions and other losses of consciousness. It took one year to be diagnosed after eventually fallng into coma on a bus.
Angie, I am extremeley impressed with your conversions; that sound about right. My body has had to live with such low blood sugars since 17, so I can get to 0.9 conscious, but confused and on automatic pilot. After that I black out.
A party is a loveley idea for you who live on the other side of the pond. Really really hope you can all get it together, will wait to hear how you all get on. Its great for me to after all these years to talk with others with similar problems. It has been so isolating, I am so glad I found this site and read your experiences, which have made me feel both comforted, saddned that others also suffer with such a horrid condition, but also thankful for life.
Wishing everyone on here recoveries and comforts. Group hug from me here in Tamworth, Engand to you all.

Janet x
Janet

Saturday, 3rd May 2008 at 12:03 pm

Don’t know whether my message got posted so will repeat, sorry if already said.

Angie

I am impressed with your knowledge, that sounds about right. At .9 I am just on automatic, conscoius but confused, below that I black out. My body has spent a large part of its life with low readings, so go lower than most before becoming uncouncious.

Thanks all for not thinking I am a coward , but really I am. I had one really horrendous experience with surgery and I am so frightend I just stick with the diazoxide

Pamela

Thanks for your vote of confidence too! No I am not thinking transplant, if I had my pancreas removed I would live without one, but as you know thats really difficult and complicated, so that why I am staying as I am, even though its not always very easy.
Fortuntely in the UK we don’t have to pay for medication with certain conditions and my diazoxide is paid for on the NHS for named patient only. I realise how lucky I am and feel really sorry for you guys having to pay so much for this medication, I must owe my life to the National Health Service, and for this I am so grateful. The party sounds wonderful for you all on the other side of the pond. I so hope you manage to organise that, I will wanrt you all to tell me how it goes.
It is so great to find this site to talk to you all. For many years I have lived without knowing any one else with same problems and condition. It gives me comfort as well as feeling like I am sharing with others. Big group hug to you all from the UK, and wishing you the love to get better and help each other. Thanks

Love Janet x
Janet

Saturday, 3rd May 2008 at 12:06 pm

Pamela

Forfgot to say, no I didn’t gain weight from medication, but do need medication for water pills to couteract water retention. All the best with the meeting with your doctors. I really hope ti helps you too.

Love Janet
Kylie

Saturday, 3rd May 2008 at 7:23 pm

Hi Everyone,

Re: Conversion of mmol/L to mg/dL.

Found a website the other day that stated 1mmol/L (UK) = 18mg/dL (US).
Angie, your workings are very close.

0.4mmol/L = 7.2mg/dL (Yucko, poor Janet)
0.9mmol/L = 16.2g/dL
1.6mmol/L = 28.8g/dL
2.2mmol/L = 39.6g/dL
2.5mmol/L = 45g/dL
Ect, ect.

Keep up the good work folks & I can’t think of a better reason for you all to get together for a party.
pamela

Sunday, 4th May 2008 at 8:44 am

Kim
so no-one has heard from Homa since her surgery? i will keep her in my thoughts and prayers….she is probably recovering.
Susie,
I do believe my body has gotten used to low-blood sugars, because i am constantly tired. I know that your insulinoma was in the head of your pancreas…so is mine…are the odds pretty low that they dont get it all out? I meet with southwestern medical surgeons on tuesday. i hear they are very experienced and smart! How long after your first surgery did it take to figure out they did not get the whole tumor out? I am so happy for you now that you are getting back your life! I used to love to walk my dogs and do some sort of outdoor activities…its to scary now…all i do is worry about my sugar dropping! I look forward to salads and walks!!!
Angie,
thank you for the conversion of blood sugar levels! That helps! What would your plane rout be from the UK? Have you been to the US?
You know what really impresses me about you and everyone else that writes and keeps up with all of us, it is the dedication, commitment, and thoughtfulness and caring even if they are healed or not! I have only been writing a short time..but it has sure helped me mentally and informatively!
Peggy
Where are you in California? My husband has family in Santa Monica. I saw Susie is from San diego! Next stop there ill look you two up!
Having a party and benefit would not only raise awareness but give many of the doctors, (endocrinologists) the knowledge they do not seem to have! Your daughter being a reporter sounds like a great plan to get a good start! My dad is retired from the Albuquerque Journal after writing there for 30 years! (Unfortunately his writing skills did not rub off on me!) and he gave me some good tips on contacting the health reporters from Dallas Morning news. I am not sure how or what i should do, but i feel like we all shouldnt have had to wait years and years for the help and treatment we needed!
Janet
Your the BRAVEST of the BRAVE! I admire your courage and strength although everyday has been a struggle. You give hope and support to all of us! I hear you about feeling isolated. No matter how close someone is to you im not sure anyone really understands how this disease affects us everyday! Thank you for your support!!!!!
Pamela
Susie

Sunday, 4th May 2008 at 8:54 am

To Pamela,
When I had my first endoscope last year they did a biospy on the insulinoma. What this did was they pulvarized the insulinoma so that they couldn’t find it when they opened me up.He made a calculated guess and took a little piece of my pancreas out where he thought the insulinoma was. If you get a endoscope make sure they do not biospy the insulinoma, this is very important. My surgeon wasn’t on my case at the time I had the biospy. My surgeon is a world renowned who specializes in the pancreas.
Good luck with everything.
pamela

Sunday, 4th May 2008 at 9:22 am

Susie,
Is it usually solely up to the surgeon for a biopsy? My doctor has not said anything about one. From what i understand Tuesday is to discuss what type of surgery they can perform on me , when the surgery is….and so forth. Do they usually want biopsys? I definitly do not want one! Is the endoscope the next step usually for the surgeon? Pam
Susie

Sunday, 4th May 2008 at 10:34 am

Pamela
I’m not sure who it’s up to for the biopsy. I think it usually is standard procedure. But my surgeon never wants the insulinoma to be biospyed. The endoscope is used to locate the insulinoma and to determine the size of it. Just make sure your surgeon has had lots of experience operating on the pancreas and removing tumors from there.
susie
pamela

Sunday, 4th May 2008 at 10:43 am

Thank you Susie, i will keep you all posted after my appointment on tuesday!
Angie

Sunday, 4th May 2008 at 12:44 pm

Pamela

Ive just found I can fly from Stansted but its two flights to get to Texas.
It does depend when, but although my husband thinks Im nuts I would be serious in trying to come out. Ill look into it a bit more!

Just one thing - they dont seem to go for biopsy here! Well there was no question of doing it. I dont think my surgeon wanted to do anything he considered unnecessary. It may be that he had thought Id have to have a whipple so it was coming out no matter, it just depended on how much pancreas he would have to take! Luckily the answer was none!

Susie’s situation doesnt surprise me , they say the pancreas is very very sensitive - any mucking about could make it difficult for the surgeon! As Susie says they can find out roughly how big and position from the scans and endoscopy and they biopsy when operating. I suppose some surgeons like to know in advance what they are dealing with.

It did surprise me that it wasnt until my out-patients appointment - 6 weeks later I was told it was ok and not malignant!

The important thing above all is to make sure the surgeon has a lot of experience with insulinoma. Make sure you ask all the questions you can think of, even stupid things. Ask what kind of pain relief they are going to give you and what they have as back up. My epidural failed after 12 hours and I was left with no pain relief for hours! They should have sorted it and got me on a morphine pump - I cant remember the technical term but you control it! If I think of anything else Ill let you know.

If you can be bothered my previous posts - a long way back - detail a lot about my op. It is different here than in the US - I was in for two weeks where as many others were home much quicker. If they can do laparoscopy (keyhole) youll be out even quicker! One guy on here was in the pub with in days!!!

Susie

Glad to hear you are mending at last and hopefully all will be well this time, i have been thinking about you and how things were going!

Well Im off to look up flights!!!

All the best!

Angie
Jane

Monday, 5th May 2008 at 9:59 am

Hi Janet,

Where did you have your op done because I don’t think I live too far from you? There are not many of us on this site fom the UK. We could have a UK branch and meet up here! It would be cheaper. Jane
Janet

Monday, 5th May 2008 at 1:27 pm

Hi again

Jane.
I had my first op done at Dudley Road Hospital in Birmingham which is now called City Hospital. I now have to attend Selly oak hospital to regulary see the endrocrinologist. I was put forward for surgery at the QE , but declined becuase of the problems which were raised if I had a second op. Have had really great treatment, although initiallty the first insulinoma took ages to diagnose as I presented with convulsions and dizzy spells, headaches and odd behaviour. I thought I was going mad. Where do you live?
UK branch sounds great. The whole forum is wonderful.

Hope everyone is ok and Pamela will be thinking of you tommorrow when you see your surgeon. God bless.

Janet x

Janet
Susan

Monday, 5th May 2008 at 8:27 pm

I still keep reading all the posts even though I’m not the one who had insulinoma. I got into the habit of it when I was looking for advice for my mother, and now I still like to see what’s happening. The idea of a meeting of the bloggers has come to me as well. I would love to meet all the people I have grown to care about and who have offered invaluable help over the many months. The U.K. bloggers should keep in mind that the U.S. is a big bargain for you these days. It could prove to be a great adventure!
Hazel

Monday, 5th May 2008 at 9:41 pm

Hi there,

Pamela,
What a wonderful idea to have a get-together and meet, and to share information about this difficult and little known disease. It’s too far for me to travel from New Zealand but my heart will be there, with all of you who have been through this.

Susie,
I am very glad you are recovering and are getting your life back. What a joy after all you’ve been through.
Do you mind if I ask who your surgeon was and where he was based? It’s always good to know who the experts are!

Best of health to everyone, Hazel.
Janet

Tuesday, 6th May 2008 at 5:55 am

I would love to meet all of the bloggers USA or UK, but understand the practicalities of such a trip. Whatever, the forum is bringing me close to others who have the same problems in their life that I have and that in itself is wonderful, even if I never get to meet anyone face to face I feel like I know you all. I didn’t think I would ever get the chance to talk to others.

Susie

What a lot you have been through, I know exactly how horrible it feels. So glad that things are coming together for you now

Janet
Susie

Tuesday, 6th May 2008 at 8:46 am

To Hazel,
My doctor is A.R. Moossa. He is the Professor of Surgery and Emeritus Chairman, Associate Dean and Special Counsel to the Vice Chancellor for Health Sciences and Director of Tertiary and Quarternary Referral Services. He operates out of the University of Califormia San Diego Medical Center. UCSD Thornton Hospital is where I had my surgeries, it is located in La Jolla, CA.
Susie
pamela

Thursday, 8th May 2008 at 9:10 am

Hello everyone.
Boy am i Exhausted! I started that diazoxide Tues. afternoon….and i have never really had problems with low-sugars in the night while i sleep…..and this morning about 7:00 a.m. my husband could not wake me..and i was drenched in sweat. He called the paramedics….and thats what i woke to this morning. Like many of us….paramedics standing over me…pumping sugar in my veins! They said my blood-sugar was 23. Im not sure what i did wrong , it had to be with the medicine. I have called the doctors…so i am waiting for a call back!
I like the surgeon i met with on tuesday. He is very experienced and seems really smart and to the point! He is from nigeria and his name is Fiemu Nwariaku..Endoctrine surgeon. I guess i will be doing it sometime in june…im waiting for them to call and give me specifics of date!
He is giong to plan a laprascopic surgery..but if he runs into any problems along the we will have to open me up! Well i just want to be done with this. I hope you all are feeling well!I am always wanting and still dreaming of a fun gathering to meet you all! Hopefully by the end of summer!
pamela
Ps i spell really bad sorry!
Janet

Thursday, 8th May 2008 at 9:30 am

Pamela

Glad to have you back had been thinking about you! Really sorry to hear about your problem this morning; how very strange. The diazoxide should help not make you
worse, hope you hear from the doctors soon- you poor thing, I know exactly how it feels to wake up with the paramedics!!
Good news about your surgery, so hopefully you will be getting your life back soon! It is reassuring for you that you have confidence in your surgeon, he sounds very able.
Take care now, and everyone else too.

Love Janet x
Peggy

Thursday, 8th May 2008 at 11:08 pm

Pamela,

Isn’t it the worst feeling! In two months time I had the paramedics wake me up 6 times. It’s hard to believe that is all behind me now. It will be for you as well before you know it.
I know when I first took diazoxide, if I skipped a dose I would fall lower than ever. It takes a while to get use to. Also, I went for years without a problem at night, and then all of a sudden I couldn’t wake up. I guess these tumors put out insulin randomly, which makes it very unpredictable.
I’m glad your o.k., I’m sure you will eat a large snack before bed tonight!

(I live only an hour south of San Diego)
Love to see you AND Suzie sometime.
pamela

Saturday, 10th May 2008 at 4:38 pm

Hello all!
I think i am going to stop the diazoxide. I took the dose i was supposed to last night and woke at 6:00 a.m in a cold sweat…i am sure if i would have slept any longer the paramedics would have had to come again! I never had these lows overnight…and i think i had my sugar under control better with my diet. I think i will just have to stick it out with my diet for another month! Of course its the weekend…do you all think its okay to quit the diazoxide as long as i keep my sugar up with food? I know thats a question i should wait for the doctor to answer…but i would love to hear any opinions! Hope everyone is feeling well!
pam
Susie

Saturday, 10th May 2008 at 10:47 pm

To Pamela,
Do you have a blood sugar monitor? If not have your docotr prescribe you one. I had one and it really helps. You only have a month left i wouldn’t fool around with that diazoxide. I never took it. At least you can take your blood sugar whenever you want and you’ll know what your blood sugar is at all times.
Good Luck!
Susie
Janet

Sunday, 11th May 2008 at 2:05 am

Pamela

Sorry to hear about your problem with the diazoxide, you must do what suits you best and it doesn’t sound like take it is doing you any good at all. Susie is quite right about a blood monitor, they are an essential with this condition! What dose of diazoxide did your doctor prescribe? At least its only a month to your surgery, but sounds like its going to be long one! Take care,thoughts and prayers are with you.

Janet
Janet

Sunday, 11th May 2008 at 2:11 am

Meant also to say, the diazoxide is a life line for me, and without it I am conking out all the time, early mornings, afternoons the lot. I find it so hard because whatever I eat to help a very low blood sugar in the morning, even slow carbs, I just produce more and more insulin, producing even more lows, with the help of the pills I can get through. However, all these inslinomas seem different and unpredictable, I would think you were better off without the diazoxide. Best of luck anyway whatever you do!

Janet
Peggy

Monday, 12th May 2008 at 5:31 pm

Pam,

I’m sure you’ve seen your doctor by now regarding the diazoxide (hopefully). I am curious to know what dosage you’ve been taking. I started taking it years ago, but I went from 25mg to 200mg 3 times a day. I would take it right before I went to bed, with a snack of course. I never changed my diet though, I still had to eat a ton of carbs.
I’d be glad to send you the unopened bottles if your taking the liquid. (If that’s legal?)
Janets right, these insulinomas are unpredictable!
Kim

Monday, 12th May 2008 at 6:27 pm

Pam

I had to get up in the middle of the night every night to eat something - usually juice or chocolate milk. otherwise I would get up in the morning and do things without knowing it! Or I would be aware but pretty out of it (still doing and thinking strange things!). Lots of stories!
Penny

Monday, 12th May 2008 at 7:42 pm

Me too! had to set my alarm for 4 hours after i went to bed to eat my snack…otherwise i’d wake up soaked in sweat, feeling awful in the middle of the night. A few stories here also~ :)
pamela

Tuesday, 13th May 2008 at 5:31 pm

Okay everyone. I am so embarrassed to say this but the medication i was on was called octreotide. I thought it was just another name for diazoxide….. apparently after being admitted in the hospital saturday night i learned differently! I had to stay in the hospital till monday night…the medicine affected me wrong and not only stopped the tumor from producing insulin…but somehow stopped my sugar production…then the insulin a few hours later kicked in and produced but the sugar did not. Thats the best way i know how to describe it. I am not good with medical talk! It was awful…i was eating cookies, pasta, dr pepper…trying to get my sugar up and i was just sweating and my heart was beating out of my chest…and then i would check my sugar and it would be 29. my husband rushed me to emergency. They admitted me and kept me on a dextrose i.v. for 2 days until the medicine was out of my system! So i have never appreciated the way i was …. until all that! Although its a little late, i agree with all of you… i need to just go the next few weeks managing this with my diet! I do have a blood glucose monitor, if i had not i do not think i could have made it this long! I hope you all are feeling well…..despite all of that, today i felt like my old regular insulinoma self. I did good today. Take care all. love pamela
Elizabeth

Tuesday, 13th May 2008 at 9:53 pm

Hi All!
I just wanted to let everyone know that I have finally gotten an official diagnosis; but it’s not and Insulinoma, despite my Insulin levels clocking in at 236.
I have Cushing’s Syndrome, what I have known for 8 years. (I diagnosed myself with it back in 2000). As a result, I am being sent to UCLA. If I need surgery (which I most likely will) for a pituitary tumor, it would have to be done there. There are no qualifying Neurosurgeons here in the San Fernando Valley.
I just wanted to say thank you for all the feedback you have given me.
God Bless,
Elizabeth
Wendy

Wednesday, 14th May 2008 at 6:53 am

Hi All,

Long time no blog. I underwent surgery in Dec last year for removal of insulinoma on tail of pancreas at Hammersmith Hospital UK and have been getting back to normal ever since. It is only now that I look back and realise how ill I was before this op and cant believe how different I feel now I feel 10 years younger. I feel part of my memory has been wiped for good and sometimes have difficulty recalling things from childhood etc.. which makes me think the slow growth of this tumour must have been with me for years. It is frightening to think that something so small can cause so much disruption and its removal can be life changing.

I went back for my check up last month and my consultant who is a specialist in this field informed me that she had done a talk to the British Medical Council to help GP’s in the UK become better informed about this illness and that it is actually more prevalent than we are led to believe. The average diagnosis time here in the UK at the moment currently stands at 10yrs as so many general practioners have never heard of it or assume it is too rare to be the diagnosis and therefore many patients are misdiagnosed with stress or epilepsy etc… for many years. The biochemical diagnosis of insulinoma is easy and it can be clinically diagnosed by one simple blood test so raising awareness regarding this illness is crucial and this website seems to be gathering pace in this respect and more doctors should be aware of it.

I hope all of you about to undergo surgery or are in the throes of diagnosis and localization can get support from this website as it helped me through many dark days in trying to understand my illness and gain positive support and feedback from those who had undergone surgery whilst I was awaiting mine. I too would love to meet all you fellow insulinomites!
Take Care all of you.
pamela

Friday, 16th May 2008 at 2:41 pm

Hello Elizabeth,
after such a long wait for the proper diagnosis i am sure you are so relieved to have one! i will pray for the best doctors and a quick recovery and healing for you! From what i have read and heard you will be in great hands at UCLA! My prayers are with you!!!!
Wendy
It was great to hear how you feel now after living with an insulinoma! how long do you think you had one? How long did it take you to get out of the hospital….. heal and get to normal things? My first endocrinologist took it upon herself to diagnose me with bulimia and wouldnt even give me a referal to mayo clinic… because she said “i am not going to do that because we can solve this with your diet.” Which by the way……i have never in my life had a eating disorder! As a matter of fact i used to love food! Now i am just tired of it!!! So all these years every time i had a bad low episode i would just cry for hours thinking “what did i eat wrong…What did i not eat!!!” I could not agree more that awareness is important!!
I have just about 3 and a half weeks before surgery…. But it seems like time is now going even slower because i cant stop counting the hours until then!!
Prayers with everyone!!
Pamela
Angelique

Sunday, 18th May 2008 at 10:46 am

Hello again friends,

It’s Angelique from Gibraltar. I have been reading all your mail but been too busy to write back. I had my insulinoma removed 4 years ago. It was quite a big operation as it was located between the head and the neck of the pancreas. I had been going to the UK since the year 2000 - first to St Mary’s in Paddington and from there was transfered to Hammersmith Hospital. For three years I underwent numerous 3 day fasts, arteriograms, countless scans… but my consultant was unsure whether or not it WAS an insulinoma. I decided to continue my care in Cordoba - Spain where they are specialised and people come from all over Europe.

Wendy,
Who is your consultant? Mine was Dr Todd - she first said I had an insulinoma without a doubt, and after a second 3 day fast, she decided my insulin levels had shot up so much, so she suspected I could have injected myself with insulin. Enraged - I never went there again and suffered endless hypos until they discovered and removed the 1.5cm tumour in Spain.
Gilmary Meffert

Friday, 30th May 2008 at 8:08 am

I am the mother of a 30 year old male, he was born (8/12/1977) with nesidioblastosis, when the umbilical cord was cut, he went into seizure, he weighed 9 lbs and 13 1/2 oz, I found out one month prior to his birth I had gestational diabeties. Twelve hours after birth, the pediatrician came in and told me my son was bleeding on the brain and the best thing to do was to let him pass. I demanded they contact Shands Teaching Hospital in Gainesville, Florida, which they did, and 3 hours later they came to Munroe Regional Medial Center in Ocala, FL, to pick him up and saw he was hypoglycemic, gave him an IV of glucose and he finally started reacting normal. For two weeks they ran tests, but they could not find out why he could not keep his blood sugars up, he continued to decline in health, so they went in to see if there was a tumor on his pancreas, there wasn’t, but he was producing an abnormal amount of insulin, so they removed his pancreas at 3 weeks old, they left about 1% to 3%, and told me he would be diabetic. He continued to have seizures and blood sugars as low as 0 to 60 or 70 at best. They put him on diazoxide and that helped some, he continued for 12 years to have seizures and hypoglycemic attacks. He was very overweight, he also took depakote for seizures, which because they were brought on by low blood sugars, really did not do anything for him, all his EEG’s came back normal. He went 2 years without seizures or any medications, then at 14 had a massive seizure went into a coma and as a result had become insulin dependant. He takes insulin as needed, but still has low blood sugars and as a result has seizures. He is now 31 years old, has been unable to work for the last 3 years, has terrible bowel problems, he also has low blood pressure, 70 over 48, was the last one that we took, he is depressed and I don’t know where to turn, he has no insurance so cannot get the Doctors up at Shands to see him, and I don’t know what to do for him. He weighs 175 lbs now but was down to 128 lbs, when this all started again he was 276 lbs, I am looking for anyone to help me, help my son deal with these medical problems and try to find some answers so he can live a normal life. I would appreciate any suggestions. Thank you.
Peggy

Thursday, 5th June 2008 at 10:53 pm

Pamela?

I think your surgery should be coming up…let us know the date so we can kep you in prayer.

How is everyone doing?

I forgot how full a normal life is! :)
Janet

Friday, 6th June 2008 at 1:37 am

Hello Peggy glad you are well. My prayers too are with Pam and everyone else with these horrible insulinoma thingies! I am ok at the moment, still taking the pills- 14 a day LOL! Hope everyone is ok.

Love Janet x
pamela

Friday, 6th June 2008 at 2:47 pm

Peggy
Hello! Im so glad to hear from you! Hope everyone is well too!!! For days i have been preparing like i am going to the hospital to have a babY! Packing…and all! Everyone is asking me if i am scared and i do not really think i am…… just anxious and excited. I am scared that i will wake up and it did not work. I just cant seem to come to terms with that i may actually be cured if successful! When you wake up is it painful if the operation was done lapriscopically? (cant spell!)
Does anyone know how long it takes to see if it might have worked? They will be admitting me into utsw med center about 4:00pm tuesday afternoon…and i am scheadualed for a 12:30 operation on wednesday. I am taking my computer to the hospital…. (If i get wireless by then..) so as soon as i can i will write! If not i will have my mom drop a note!
Thank you Janet for your prayers…my prayers are with you as well!!
Love pamela
Laura

Friday, 6th June 2008 at 2:59 pm

Pamela,

They know instantly if the procedure works. I went into surgery with a glucose drip, the minute they took out the tumor, they switched it to an insulin drip as my sugar instantly went way up. In fact, I had to stay in ICU the first 30 hours because my sugar was too high, crazy huh? As for the pain, I had an epidural that they put in before surgery before they put me out. The thought was that when I came out of surgery, I would be in a lot less pain. Great thought, but not truly successful. Because the incision goes so high up (to my bra line), the epidural is placed very high. What this means is you can’t be laying flat for it to work. When I came out of surgery, they had me almost all the way flat and I was in a lot of pain. They gave me drugs, but they were very puzzled as to why the epidural was not working. Once they figured out the epidural was “pooling” and sat me up, the pain almost went away. I definately recommend the epidural and the PCA when you are done with that. the PCA is the machine where you get a constant stream of drugs and when you need more you push a button. By the time I went home, I was on oral meds, but none were as good as the epidural or PCA.

Good luck! You will not believe how great it is not to eat all the time! I dropped a ton of weight and have never felt better!

Laura
pamela

Friday, 6th June 2008 at 8:53 pm

Laura,
thank you for the info! i got a wireless hook-up for my lab-top….. so hopefully i can catch up with you all sometime after surgery! if it is laproscopic , i am hoping to be in for only a few days! we will see! i just want to eat fresh spring rolls… and iced tea and go walking in the evening! tell me its possible! pain medicine seems to always make me sick….. i guess they will give me anti-nausea meds. i would love to loose 35 pounds! your story gives me hope!
thank you
pamela
Susie

Friday, 6th June 2008 at 9:53 pm

To Pamela,
You will be fine. You sound like me. Since my surgery I have had a huge craving for iced tea. I have been drinking it everyday. I too have lost so much weight, I am the thinnest I have been in years. Those insulinoma’s sure put on the weight. Now I can go hours without eating and nothing happens to me. No more crazy behavior. If i can make it through 2 huge surgeries you can make it through a laproscopic surgery.
Good luck, you will do great.
Susie
pamela

Wednesday, 11th June 2008 at 6:34 am

Hello! Well i spent the night here at the hospital…and its now 7:30 a.m. I am patiently waiting for 12:00 noon for my surgery. I just have this huge knot in my belly from my nerves! I do have wireless on my computer… so my mom or i will write as soon as we can. we will let you all know! everyone take care!
Love pamela
Peggy

Wednesday, 11th June 2008 at 6:37 pm

Oh my! You should be out of surgery by now! I’ve prayed for a successful operation with no complications. I hope you woke up o.k. Yes their will be pain, as I’m sure you have discovered already. Fortunately the pain meds work well. I only needed them the first day. But do be patient and know that time will pass much quicker after tomorrow. consentrate on how great life will feel in just a few short weeks! Today I’ve only eaten yogurt an apple and a vegetable juice, and I feel great!
I can’t wait to hear about your results and the whole experience, which should be hopefully 75% behind you.
I’ll continue to pray for your recovery.
:)
Peggy
Raelene

Saturday, 14th June 2008 at 6:00 am

Hi,
What a great website. I have got more information from here than any doctor.
I have just left visiting my brother in hospital. He flew in from Bali to Melbourne 2 days ago and was rushed to hospital within a couple of hours, after he passed out at the pathology lab. He has many of the symptoms of insulinoma. They have ruled out malaria. Although his diagnosis has not been confirmed, they think its insulinoma. The doctor thinks he may have had his drink spiked and this is the result. Sounds strange to me… Has anyone ever heard of this happening before?
I wish all of you the best of luck in your recovery.
Thank you.
pamela

Wednesday, 18th June 2008 at 8:13 pm

Hello everyone!
I am home now! I spent seven days in the hospital. I have about (i think) a six or seven inch incision. I am happy to say my sugars are doing wonderful! During those seven days i wasnt able to eat for at least 4 of them….and my sugar was a little high and then stabilized! Nothing was short of any of you saying that the pain is excruciating! Holy cow! I am taking pain medicine hear at home… i have a-lot of back pain and feels a little like pressure too! Sleeping at night is the hardest! I hate to sleep on my back! I am assuming it is common and normal to have a full tight belly? Protruded i mean. I guess i am just still so swollen. I think i have drank gallons and gallons of water and unsweetened tea! No juices or dr peppers! I feel i have a long recovery still ahead ….but i am so excited to begin my new life. Love to hear from you all!! I hope everyone is doing well!
Love pamela
Penny

Wednesday, 18th June 2008 at 8:33 pm

pamela,
congratulations! :) :) :) what a liberating feeling, eh? i’d say i had a bit of a swollen belly for a while too. (and i didn’t enjoy sleeping on my back either!)…but in a few months you’ll be healed up, so hang in there! I’m very excited for you.
penny
Susie

Wednesday, 18th June 2008 at 10:36 pm

To Pamela,
I was thinking about you and wondering how you have been doing.
I must say the worst part is sleeping on your back. I have been doing it for 3 months on this last surgery, I’m finally sleeping on my sides. I used many pillows to prop me up.
Isn’t it great not to have to eat a lot of sugar or drink sugary drinks. I haven’t touched a glass of orange juice in months and probably never will.
I’m glad you are doing well and I hope you have a speedy recovery. Take care.
Susie
Kim

Thursday, 19th June 2008 at 5:55 am

Pamela,

Hooray. I have been thinking about you too and am so happy that all went well. You’re through the hard part and it will only be downhill from here! I remember thinking that my stomach would never be the same but while it isn’t exactly the same (my belly button is crooked!), it is pretty darn close. I also remember that “beached whale” feeliing when it was so hard to turn over, get up etc. I thought, if they have an emergency in the hospital I will be stuck here on my back! But it gets better and better before you know it. I think the more you use your stomach muscles, the more quickly you heal, just don’t overdo it either. So happy to hear from you!
Janet

Friday, 20th June 2008 at 5:49 am

Hi All and especially Pamela

So glad to see you home are doing well. I know exactly the pain you have been in, but every day from now on will get better. Well done!! Take it steady and don’t try to rush stuff, remember you hrlife have the rest of your life to catch up with everything; the work is always there.
God bless.

Love Janet xx
Janet

Friday, 20th June 2008 at 5:49 am

Hi All and especially Pamela

So glad to see you home are doing well. I know exactly the pain you have been in, but every day from now on will get better. Well done!! Take it steady and don’t try to rush stuff, remember you hrlife have the rest of your life to catch up with everything; the work is always there.
God bless.

Love Janet xx
Nicky

Tuesday, 24th June 2008 at 9:20 pm

Hi everyone! I’ve recently come upon your lovely family and would love to join in.
I was diagnosed with an insulinoma coming up 3 year ago now and had no idea what it was let alone what I was in for.I’m a 35 year old mother of two girls living in Wagga Wagga Australia. About a month after my second daughter was born I starting getting symptoms like shaking, sweating,numbness in my throat and face.My GP thought it might just be a result of the pregnancy (which I had no problems in) or breastfeeding.After telling me to “eat more” I continued like this for about 5 months wiht the symptoms going from an episode a month to once a week to everyday. Finally I was given a 5 hour fasting test (breastfeeding through it),my sugar levels were 5.3,4.5,4.5,1.7,2.5. Let me tell you the following headache was just wonderful.
Iwas referred to an Endocronologist in Brisbane (I was living there at the time) who told me what was wrong within a half hour of being there.Iwas sent to hospital for a 72 hour fast which only lasted 4hours beforea brought back a 1.7 reading and an hour later a 1.3.
I had an endo ultrasound which showed what they thought was the tumour on the tail of my pancreas.I was booked in for surgery,by this time almost another year had passed.I had the tail removed by laparoscopy in March 2007,they scanned around at the time and couldn’t find anything else so they closed me up and hoped for the best.I was uncomfortable for a couple of days but recovered quickly.All the while my glucose levels were in the 9’s and 10’s so they thought all was well.Then I got the pathology back,not only was the growth not the tumour but the rest of tail was fine too.I had a few complications with fluid leakage and was in and out of hospital over 3 weeks and by the end of it my glucose was low again.
We moved to New South Wales last christmas and I recently got the ball rolling again since I seem to be a walking hypo these days (even as we speak,sorry about the spelling).
I was booked in at St Vincent’s in Sydney and repeated the scanning.This time a CT and EUS both showed up the tumour on the back of the head of my pancreas,it’s 1.2cm.I’m booked in again for surgery on the 5th August.This time it doesn’t look as though I’ll be so lucky,I’ve been told to expect a whipple.Susie am I right when I say that you’ve been through this proceedure,Could you give me a heads up on what to expect out of it? I’m worried that because I’ll only have one third of my pancreas left that I will be diabetic at the other end, not to mention the lack of a good part of my inards.
I’m sorry this has been a long one but I thought I’d give you the whole picture.Good luck to eveyone recovering and about to have proceedures.I’m over the moon that I’ve found you all,it’s great not to be alone.:)
Nicky
Peggy

Wednesday, 25th June 2008 at 10:38 am

Hi Pamela

How are you feeling this week? I know every week gets better and better. Hopefully the pain in your back has improved and your tummy is not as swollen. It is all so worth it isn’t it. Continue to take it slow. I know it is hard because, if your like me, my brain wants to do sooo much, all the things you haven’t been able to for so long. I’m so happy for you.
Peggy :)
Janet

Wednesday, 25th June 2008 at 11:33 am

Hi Pamela, Peggy and everyone. So nice of Peggy to be enquiring about Pamela, I also endorse that enquiry.
So hope Pamela that you are a feeling little stronger each day. Everyday gets a little bit better. Love and prayers,

Janet x
pamela

Wednesday, 25th June 2008 at 2:10 pm

H everyone!
Im sorry my phone lines and computer were down for a few days! Im so glad to hear fro you all!! The last two days i have really been feeling better! My back has a little pressure and pain…my swollen belly is going down! Peggy you really said it! I just cant stop thinking how i can work out, travel, even watch my girls worry free! I think my husband and nanny are having a hard time believing i am okay after only having ice tea and a bannana…. i can see them watching me to see if i am acting normal! Food never used to taste good …… but now i am enjoying it! I still think of us all getting together! I think in august we might be going to california to visit family and a small vacation…maybe i can see you peggy and suzie! Anytime anyone wants to come to dallas and has the time….tell me!! we will get it all plannedLove and my prayers to all!
Pamela
Janet

Wednesday, 25th June 2008 at 2:57 pm

Great to hear from you pamela and that you are doing so well. It should be a clear road all the way now , glad you are back online. Now don’t get carried away and do too much too soon. So glad you got your life back

Love and prayers, Janet xx
Kim

Wednesday, 25th June 2008 at 4:20 pm

Hi Pamela,

So glad to hear that you are getting better so quickly! Keep it up but do take it slow. You’ve had major surgery and your body needs time to heal fully. I’m sure your family is thrilled as well.

Best to you,

Kim
Peggy

Wednesday, 25th June 2008 at 11:05 pm

Pamela,

I would LOVE to see you, yay!! I hope your vacation plans work out. You should be feeling pretty great by August.

Raelene,
I hope your brother is doing ok. Alchohol is the one thing I couldn’t touch. Every time I did I ended up in emegency. Nothing dropped my sugar as low and as quickly as a drink.
Let us know how the diagnosis goes.
Peggy
pamela

Thursday, 26th June 2008 at 9:17 am

Hello again!
Raelene, I just saw your blog…….. i missed it….. i guess i was in he hospital! Im curious to hear how your brother is. Let us know what they have found. I have to agree with Peggy, Alchohol is like poison if you have an insulinoma! Nothing made me sicker. Peggy i think I asked you and Susie before how far you all are from Santa Monica. I know Susie is in San Diego, But i cannot remember where you are. I am sure a trip to California will be happening this summer some-time! Have a good day everyone.
Pamela
Peggy

Thursday, 26th June 2008 at 5:38 pm

Hi Pamela,
We live in South Orange County, probably an hour south down the coast from Santa Monica. San Diego is another hour south. Cool place to vacation! :)
Nicky

Wednesday, 2nd July 2008 at 4:16 am

Hi everyone,
It’s interesting to hear people commenting on the effects of alchohol on our symptoms.For the last 15 or so years,and quite out of the blue,I suddenly became almost allergic to having a drink.I never drank that often but when I did I would be violently ill all night after just one glass.I used to put it down to tummy bugs but I soon decided not to drink again.However when we recently made a move across country a friend offered a goodbye toast to which I reluctantly accepted and shock horror, no vomiting! All of a sudden I can drink again,don’t know why?
Hi to Angie on the other side of the country,hope your well.
Has anyone else had or going to have a whipple done? I only have 5 weeks to go and would love some info.
Take care Nicky:)
Nicky

Thursday, 3rd July 2008 at 7:55 pm

sorry I made a mistake,I was having a moment,I meant to say hi to Kylie not Angie in Australia.Hi to everyone else too!
Nicky
Hazel

Tuesday, 8th July 2008 at 4:17 pm

Hi all,

I’ve had great news….they found my tumour! USC called to say they could clearly see a tumour on the CT I sent them. I can’t believe that after 23 years of having symptoms I could finally have found what is wrong with me! It’s so hard to believe that I keep thinking that perhaps it’s another sort of pancreatic tumour etc etc…. I’m booked to have surgery at USC on August 8th with Peggy’s surgeon Dr Dilip Parekh. He said my tumour was on the head/neck area of my pancreas but said they felt they could do the surgery laparoscopically. It will be very expensive as I don’t have insurance and I’ll need to be in the States for 3 weeks but it will be so very worth it. Thanks to what Peggy has told me I’ve got confidence that I’m going to the experts which is something I would not have in New Zealand with our small population.

Hazel
Kim

Tuesday, 8th July 2008 at 4:24 pm

Hazel,

That is such GREAT news! I don’t know how you’ve survived for 23 years. 2 years was plenty long for me! Sounds like you’re in expert hands at USC. August 8th will be here before you know it.

Congrats to you!

Kim
Hazel

Tuesday, 8th July 2008 at 5:28 pm

Kim,

Thank you, I can’t wait! I was 13 when I got ill so I can’t imagine what life will be like for me… how exciting! You know I’ve never had a low blood sugar or high insulin reading (they don’t do 72 hour fasting tests here) so I still have that nagging doubt that it is an insulinoma, but I have all the symptoms and now I have a tumour so it’s looking pretty good. I’m so encouraged by the success stories I’ve read here and have learnt so much from reading the posts. I can honestly say that without this site I would never have found out what was wrong with me and will be eternally grateful to everyone who has shared their stories.

Hazel.
Janet

Wednesday, 9th July 2008 at 8:48 am

Hazel just so pleased for you. I know so much how it is to have this illness long term. I have had it twice over since I was 17 and now at 52 it sure is a long slog. I hope all goes well for you with your surgery.If Pamela is anything to go by it looks like you are in good hands. Will be saying prayers for you.
I have a son who is getting married on August 2nd, so even with this horrid illness I have managed to raise a lovely boy, so August is going to be a great month for some of us insulinoma people!! Take care and just keep focused on getting well. Keep right on!
Love Janet x
Peggy

Thursday, 10th July 2008 at 1:35 pm

Hazel,

Finally! I am really excited for you. To think that a tumor was there all along, just waiting for the right doctor to discover it. You can start looking forward to a whole new life…I know that having lived with the disease for so long you begin to think that this is the way life is, but it’s not! You almost have to learn how to live all over again. But it is very exciting, as you will soon see. August 7th is so close! I have it on my calendar so I will be looking forward to it for you as well.
I hope that they give you a huge discount since you do not have insurance. My hospital bill was 73,000! But so worth it. Stange that you never had a 72 hour test, but I’m sure you must have had your sugar levels checked with a monitor. How low were your levels?
Well, I will keep you in prayer. Maybe if your recovery goes well we can meet in August when Pamela comes!
Soo happy for you,
Peggy
Hazel

Friday, 11th July 2008 at 5:32 pm

Hi folks,

I have a complication. The day after I posted I found out I have thyroid cancer and will need surgery to remove my whole thyroid gland within the next couple of weeks. It is papillary thyroid cancer so my prognosis is great, but this may effect when I can have my surgery at USC. I have a message in for them to call me and until I have spoken to them everything is up in the air.

Janet

Thank you so much for your well wishes! I can’t imagine having this dreadful disease twice in life and it is a testament to your strength and courage that you have survived. My whole heart goes out to you. What a credit your son is to you, and what an achievement to raise a good man when you must have struggled so badly. What a wonderful day August 2nd will be for you!

Peggy

I knew you’d be thrilled for me! I had also thought we could meet all going well, and you never know I may still make it there in August. That would be great.
I was never given or made aware of blood sugar monitors and I should say that we don’t get the same level of care in NZ. Doctors here worry about high blood sugars and not low blood sugars unless you black out so I had no chance of treatment. Only now that I have found my tumour will they take notice of my hypoglycemia. For that reason I have been able to request a glucose drip during my thyroid surgery and make hospital staff aware of my condition. Of course the surgeon would also love to do my tumour surgery as they don’t see many here but I’ve read the posts and I know I need an experienced surgeon.

Thank you all for keeping me in your thoughts.
Hazel.
Janet

Saturday, 12th July 2008 at 7:51 am

Hazel,
Thanks for your kind words and well wishes for my sons wedding, I feel very privelged to have a lovely son.
I am so sorry to hear about your complications/setback. You will need to be very strong right now, but I am pleased and relieved that your thyroid cancer is papillary and has a good prognosis. I just hope your pancreatic surgery will not be delayed too long, as the sooner you can have the tumour removed, the sooner you will be on the road to some sort of normailty. My love and prayers remain with you over the coming weeks, so take care and keep in touch with us all when you are able.
Pamela,
I hope you are continuing to improve and getting stronger as ech day passes.
Love to all!

Janet xx
Janet

Saturday, 12th July 2008 at 7:51 am

Hazel,
Thanks for your kind words and well wishes for my sons wedding, I feel very privelged to have a lovely son.
I am so sorry to hear about your complications/setback. You will need to be very strong right now, but I am pleased and relieved that your thyroid cancer is papillary and has a good prognosis. I just hope your pancreatic surgery will not be delayed too long, as the sooner you can have the tumour removed, the sooner you will be on the road to some sort of normailty. My love and prayers remain with you over the coming weeks, so take care and keep in touch with us all when you are able.
Pamela,
I hope you are continuing to improve and getting stronger as ech day passes.
Love to all!

Janet xx
Kim

Sunday, 13th July 2008 at 5:33 am

Hazel,

You are a strong woman! I have you in my thoughts and hope that it won’t be long until you have all this nonsense behind you. Keep us posted as to your progress.

Best,

Kim
pamela

Sunday, 13th July 2008 at 11:40 am

Hello everyone!
As i was told each day i have gotten stronger and able to do more things! I thank God every day.
Janet…I am so excited for you and your son and family! What a blessing to see the next stages of life to take place in your sons life! You must be so proud! August 2nd is so close it must be very exciting around there!! Make sure you take care of yourself as i know you probably are trying to do so many things for a perfect day! Congratulations to your son and soon to be wife!!
Just think it probably wont be to long before you are enjoying grandchildren!
Hazel
I am glad to hear you you have got the proper diagnosis. Wow 23 years. It sounds to me everything came to head at once so that you can get all fixed and healed so that you can live and enjoy a healthy life!! You are in my thought and prayers. Please keep us informed.
Peggy, we are still hoping to make it there soon……….We called on some home rentals in Malibu….. most wil not rent for a weeks time….. the others are ridiculously expensive! Looks like we will probably be staying with the in-laws.
Love to all! Pamela
Janet

Monday, 14th July 2008 at 8:57 am

pamela!

Glad you are continuing to improve and geting yourself stronger, that is great news for you and your family and will also give encorougment to others, particulary Hazel who is due to have surgery soon.
Thank you for your kind words and best wishes about my son, Harry and his forthcoming wedding. You are spot on, things are really hectic , almost manic round here at the moment with the arrangements. I am working hard after myself, so that I can stay well for this special day.
Love to all,

Janet xx
persephonie

Monday, 14th July 2008 at 4:37 pm

I’m not sure that I understand where to post on this site. I don’t mean to be disrespectful Janet because this isn’t a direct reply to you or your son’s upcoming wedding, I’m just trying to introduce myself. A few weeks ago, I was searching through symptoms and causes of acute diarrhea and racing heartrate and I came across insulinoma. I read the article and I started thinking that perhaps I’m not actually crazy. It started 3 years ago. I didn’t have anything in particular that seemed to be wrong. I just felt tired and just not right. A few months later, I had my first ’seizure’ and I was diagnosed with complex partial seizures. During that 1 1/2 yrs of anti-seizure drugs, I was still having episodes of would-be seizures. I zone out, literally. Stare out into nothing, I’m confused, extremely hot, heart races, mind fuzzy, blood pressure spikes up, feel sick, face and hands tingle, etc. Lately, I have enjoyed a new symptom of diarrhea during this. I have neurological symptoms too, which led me to an appointment at Mayo in the Epilepsy Dept. It’s like half of my body doesn’t want to work. I can’t walk a straight line and act and talk like I am drugged. Doing simple tasks takes immense mental effort. At my last appointment at Mayo in October 2007, I was told that I didn’t have epilepsy or a tumor in my brain and that perhaps my “seizures” were from a mental health issue rather than a brain issue. I was so ashamed that my mind would be making myself this sick and so I have never gone back for another appointment. I was scheduled to see an endocrinologist because, at the ripe age of 36 (now I’m 37), my body has decided that my periods should only last 2 days tops and it can’t decide on a set time to come. I canceled my endocrinology appointment because I didn’t think that I could go there and be told that I need to get it through my head that the problem is in my head again. However, in the recent months, I have been continuing to go downward. Now, during mid-cycle and during my period, I enjoy emptying my intestinal tract and constantly feeling like I am going into shock. At my side, I keep a stash of soda crackers, mints, and Dramamine. I yo yo through the day between eating and feeling sick. I have to eat sugared plain oatmeal or some other large snack before bed, and much to my husband’s angst, I even eat crackers and mints in bed until right before passing out. I know I need to go see someone. It is just very hard to muster up courage when others have said they don’t think anything is wrong. How did you all muster up the courage and talk with your physicians and even muster up the courage to say “I think that I have an insulinoma”. I just want to be able to say, “There is something so wrong with me. Please stop thinking it is stress and test me for something else.” Thank you for letting me unravel and thank you for putting your stories out there. Anne To Janet: enjoy the wedding and all of the craziness. Congratulations! It is wonderful when a family grows!
Peggy

Friday, 18th July 2008 at 10:40 pm

Hazel,

How’s it going?? Have you heard from USC yet? I can’t believe you have to deal with thyroid cancer right now! I don’t have any idea what papillary means, but I hope it’s a good thing. I have two friends that had thyroid cancer. One had their thyroid removed years ago and is doing just fine and my neighbor just had hers removed the same time I had my surgery. She’s doing well also. I will continue to keep you in prayer. Please let me know when you have more news. I’ll keep hoping for August.
Peggy
Hazel

Friday, 18th July 2008 at 11:29 pm

Hi all,

I’m going through the processes before having thyroid surgery but have held things up a little by getting a second opinion by another lab on the cancer diagnosis, and meeting with a second surgeon to check I’m getting the best care. The surgery won’t be this coming week but could be any time after that and apparently I’ll heal within one to two weeks following the thyroid surgery. USC want to leave four weeks between surgeries so will call me in a couple of weeks with a new surgery date.

Peggy

I’m not sure what papillary means but it is one type of thyroid cancer, and the one with the best outcome for the patient. 70% of all thyroid cancers are papillary and it effects more women than men, with most people being between 20 and 40 when they’re diagnosed. Thank you for keeping me in your prayers, it means a lot. Great to hear your friends and neigbour are doing well, they like you, are inspirational to me.

I appreciate the supportive comments and kind words that have been posted. It’s so great to have friends online who understand understand what health problems are like. I’ll keep in touch when I can.

Hazel.
Rachelle

Saturday, 26th July 2008 at 3:04 am

I am a 33 year old female with a genetic disorder Neurofibromatosis Type 1. This disorder increases my risk for developing tumors anywhere in body. I have suffered from repeated nausea episodes 2 hours following a meal. I just recently started testing my glucose at home at 1 hr and 2 hours after eating. I have discovered that my glucose level is on average 64 1 hour after eating and 2 hours after eating is is rountinely in the low 50’s. A 3 hour GTT test confirmed this. I have had a CT of the abdomen and an Octreotide Scan, both of which came back normal. My GI specialist performs a colonoscopy and endoscopy every 3 years because I had adenomas in my colon at age 30. This summer I had a repeat colonoscopy and no adenomas were present.
My gastrointestinal specialist told me that because of my genetic disorder that causes tumors I should see a Endocrinologist. We have ruled out any GI tumors/disorders that could cause the chronic nausea. He recommended a Endocrinologist but it was going to take 5 months to get in to the one he recommended.. I scheduled the appointment and have kept it, but I was able to get into a different Endocrinologist sooner and did. She was great on the initial appointment and requested the standard blood work including 3-hour GTT test, C-peptide, Insulin Stim, Thyroid, and Parathyroid levels, and cholesterol. The only result that came back low was my 1 and 2 hour glucose levels during the GTT test. At my follow-up visit she walked in the room and said “she was running behind” schedule” and spent exactly 2 minutes discussing my results. She simply said that based on my GTT test, I needed to “watch my carbs”. Then she left the room. I know see why it was so easy to get into her. Also after my disappointing experience I read reviews of that doctor and was shocked that other people had the same experience with her. I have one more month to go before I can get into the other Endocrinologist and my GI doc is adimate that I get the second opinion.

My Gastrointestinal doctor is really concerned that I might have an insulinoma because of my chronic symptoms of hypoglycemia and because of the Genetic disorder that my son and I have that pre-disposes us to developing tumors anywhere in the body. I had know idea that my sudden changes in mood, tendency to “space out”, memory problems, nausea, and repeatedly low blood sugar levels, constant craving for sweets, and always wanting to snack throughout the day and at night, might possibly be related. My blood sugar has never been over 95 even right after eating a meal or drinking a coke. I start have Hypo symptoms when my blood sugar is in the low 60’s. Not sure whether this is pertainent or not but in the last 2 months I have gained 18 lbs. My weight 2 months ago was 140 and now I am 158.
And the weight gain is not from inactivity or lack of exercise or eating junk food.

I was wondering if anyone knows whether or not an Octreotide scan can miss small Insulinomas???? If so how accurate is the 72 hour fast??? Do you always see abnormalities in C-Peptide levels???

I am so frustrated because I have been suffering from the symptoms of low blood sugar for the last 5 years and in the last year it has become more severe?? I didn’t realize until this past year that my glucose levels were so low during my episodes. I just was being treated for chronic nausea. Once I started testing my blood sugar I noticed the low glucose levels which are temporarily relieved by drinking a COKE or eating candy.

I have not been to any other doctors than my Gastrointestinal Specialist who is awesome and then the Endocrinologist who was horrible. I am apprehensive about going to the other Endocrinologist because I don’t want the same thing to happen as with the 1st one. Insulinomas are quite rare and many doctors may only see a handful in their career. Does anyone know which tests are the most accurate in detecting Insulinomas. I have read that many are not detectable until surgery is performed??? Do they still perform the 72 hour fast test????

I am sorry for writing such a long entry. It was very comforting to find this site. I just wondered if anyone could answer my questions above. I am logging everything I eat and testing my glucose levels at timed intervels. It is expensive buying all the strips but I was hoping to find a patterrn.

I am grateful for anyone who could give me some input.

Rachelle
pamela

Sunday, 3rd August 2008 at 9:45 am

Janet,
Just wanted to see how your sons wedding went…and to send best wishes to you and your family!
Hazel
hope you are getting the answers and care needed at this time… Let us all know what is going on.
Its been quiet out there with everyone! I hope you all are feeling good, and staying happy!
God bless!
Pamela
Hazel

Monday, 4th August 2008 at 3:50 am

Hi,

I’m booked for my thyroid surgery on Wed 13th August which is Tuesday 12th northern hemisphere time. This has been rescheduled for some reason as it was meant to be Wed 6th so I hope it goes ahead. My pancreatic surgery is booked for a month later on Friday 12th September northern hemisphere time. I can’t wait to have that done so I can feel better but I’m afraid I’ll be really nervous on the surgery day. Were you guys all nervous when you had surgery?

Pamela
How are you getting on? Are you back into your usual life? I hope so and I hope that this illness is all behind you now.

Hazel.
pamela

Monday, 4th August 2008 at 8:28 am

Hazel,
I am feeling completely normal! Exercising, eating right… drinking iced tea…. i still have not had one soda…. or juice. I thought dr peppers would be hard for me to quit, but i guess i had really burned myself out on them during my low-blood sugar days! On aug. 11 it will have been two months since my surgery. My weight has gone from 149 to 133, by just eating and exercising normally. Everyone here that shared there stories and gave advice really prepared me and helped me before my surgery. I still feel like we all have to come together and meet…… because there are no others like us! You are probably really excited right now. And you should try and just think how its going to be feeling healthy again. Did you have a-lot of low-blood sugar attacks? Crashes? Are there different symptoms to thyroid cancer? You are going to USC?
Hope everyone is doing well! hope to hear from everyone soon!
Pamela
Janet

Monday, 4th August 2008 at 2:12 pm

Hi Everyone

I hope everyone on here is doing ok.
Pamela
Harrys wedding on Saturday was wonderful, just like a dream. The both looked so beautiful, but more importantly the looked so happy and so in love. I was of course both proud and tearful. Harry really was a gift from God, with all the health probs that accompanies this horrid insulinoma condition. To see him grown up, healthy and handsome I feel very blessed. Thanks so much for asking. So glad you re doing so well.
Hazel
You are in my prayers and especially on your surgery days. Pamelas posts must be very encoraging for you, just take each part of your treatment step by step and before you know it you will be out the other side, getting your health and strength back. Take care and keep that chin up!

Love Janet x
Janet

Monday, 4th August 2008 at 2:12 pm

Hi Everyone

I hope everyone on here is doing ok.
Pamela
Harrys wedding on Saturday was wonderful, just like a dream. The both looked so beautiful, but more importantly the looked so happy and so in love. I was of course both proud and tearful. Harry really was a gift from God, with all the health probs that accompanies this horrid insulinoma condition. To see him grown up, healthy and handsome I feel very blessed. Thanks so much for asking. So glad you re doing so well.
Hazel
You are in my prayers and especially on your surgery days. Pamelas posts must be very encoraging for you, just take each part of your treatment step by step and before you know it you will be out the other side, getting your health and strength back. Take care and keep that chin up!

Love Janet x
Hazel

Monday, 4th August 2008 at 4:36 pm

Pamela
It’s wonderful to hear how well you are doing and so soon after your surgery. I am greatly encouraged by your progress, thank you for sharing it with me. It must be so good to have some control over your life and to be able to eat, exercise and go on as normal. I imagine the weight loss is a big achievement too, knowing how terribly hard it is to maintain a healthy weight with this illness. What a success!
Interestingly there are no symptoms for my thyroid cancer. If the tumour was bigger it could have given me a hoarse voice or obstructed my windpipe, but it is small so isn’t giving me any problems. The blood sugar problems which I’m hoping are from this tumour on my pancreas, are a different story. Each day I struggle with dizziness, weakness, speech difficulties etc and need to eat often to manage these symptoms. Unlike most people I don’t black out but still have classic symptoms of hypoglycemia. The thyroid surgery will be done here in New Zealand as it is a common operation so my surgeon has a lot of experience. All going well my pancreatic surgery will be at USC as there is just not enough experience here among surgeons due to our small population.

Janet
Thank you for your supportive words and for your prayers. It sounds like your son’s wedding was one of those truly special moments in life that you’ll treasure forever. I appreciate your advice and I think step by step is the best way to move forward with the next two to three months. I like to think Pamela is right and that all my problems have come to a head at once so I can get well and move on with life. I can’t wait!

Take care everyone, Hazel.
Peggy

Thursday, 7th August 2008 at 12:10 pm

Hazel,

You really have a lot to think about! August 12th and September 12th are on my calander. Though this can be an uneasy time for you, I’m sure you are both anxious and excited as I was.
The pancreatic surgery, whether or not is is laparascopic, is a major surgery, but Dr. Parekh is so confident and matter of fact, I think that really helped keep me at ease. And you will love his assistant and resident doctors. They are wonderfull and caring people (they seem very serious, but I found they have a great sense of humor! :) So try only to look ahead to the future, and I will be praying that God will keep you in perfect peace as your mind is stayed on Him. Please let us know as soon as you can how the thyroid surgery goes.

Pamela,

I glad you are feeling so good! I hope your plans for the summer have worked out. We’d love to meet with you if you have time. If you can make it down to San Juan Capistrano
maybe Suzie can drive up as well! Anyone else??? :)
Kim

Tuesday, 12th August 2008 at 11:43 am

Hi Hazel,

I think you are going in for your thyroid surgery tomorrow or Thursday. Just wanted you to know that I am thinking of you and know that all will go well and before you know it, you will be getting that darned insulinoma out too! Be a patient patient as someone said to me and get better soon!

Best to you,

Kim
Janet

Tuesday, 12th August 2008 at 2:31 pm

I echo Kims thoughts for you Hazel! Thinking of you Hazel as I am sure everyone here is. Take care and look forward to hearing of your recovery. Hope to see you here relly soon. God bless.

Janet xx
Peggy

Tuesday, 12th August 2008 at 9:03 pm

We’re all pulling for you Hazel

I’m praying that your surgery went quickly and your recovery goes even quicker! Have someone post for you if you can. We’d all like to hear that you’re doing well.
pamela

Wednesday, 13th August 2008 at 8:44 am

Hazel,
Im praying for you too! Your on your way now to being healthy! Pray that you recover quick so that you can move forward! Everything is going to be great!! Please keep us posted! Love Pamela
Hazel

Thursday, 14th August 2008 at 8:25 pm

Hi there,

I’m back at home and am doing just fine. My operation went well and I was only in hospital the one night. Now that I’m home and have had some sleep I feel a lot better and am able to eat and drink normally and move around without a problem. All I have is a stiffness in my neck and shoulders and a feeling of having a lump in my throat, other than that I’m slowly getting everything else back to normal. Just before I rest I wanted to let you all know I’m fine and I truly appreciate all the support, it is wonderful.

Hazel xx.
Janet

Friday, 15th August 2008 at 7:38 am

Hello!

Hazel!! It was wonderful to see your message to hear that youare at home recovering. Great to hear the op went to plan and that are mobile and can eat and drink. Now you need to take each day as it comes and get plenty of rest. So glad you are up and around, my prayers remain with you.
Love to all,

Jant xx
Socel Saycon

Friday, 15th August 2008 at 3:55 pm

to whom it may concern:

I am from philippines and i am very hopeful that this site will help me in the big problem taht my mother is facing right now, she is diagnosed with her doctor wthat sha has this INSULINOMA, sinec it was really new to me and i never heard that kind of ilness in my whole life i hurriedly research it on the internet and i was very sad that its a tumor on her pancreas, we’ve been confined in the public hospital for 2 weekks and we cannot afford anymore to see her in bed, i feel so pitty and i love my mother so much because she is the kindest mother to us, please help me and my mother on how to overcome this big problem?will there be surgery on the tumor? but we dont have money for the operation.Is there any possibility that my mother will again live a normal life? please help us… anybody who could read this letter of mine, i really need your help.
Susie

Friday, 15th August 2008 at 4:01 pm

To Nicky
I’m sorry to hear you need another surgery. Make sure your surgeon has done many Whipples. My surgeon is world renowned and has done the most Whipples in the US.
My surgery took 7 hours. My stay in the hospital was fine. But once I got home I was a real mess. Expect to lose lots of weight. I have lost 40lbs. You will never be able to eat like you used to. Expect lots of nausea and vomiting, burping and gas the first couple of months. I have to say after 6 months I am now swimming 1 mile 3 times a week and walking alot. My stomach has settled down and I can eat almost anything. However stay away from fried foods, regular mayo and anything with lots of oil or fat in it. You will get bad diarrhea and gas. I still have to be careful at what I eat, spicy foods bother me.

You will not be able to do anything for weeks right after surgery. Make sure you have someone to take care of you, bring you your meals, take care of your kids and someone to clean the house. It is a long recovery. I ate alot of cream of wheat, toast and cereal while recovering.
I have to take Prevacid for the rest of my life.
If you have anymore questions don’t hesitate to ask.
Good luck with everything.
Susie
Peggy

Friday, 15th August 2008 at 7:35 pm

Persephonie,

I’m glad you posted! We all jump in whenever…

I know how it feels to have doctors suggest you’re mentally ill. It’s even worse to wonder yourself if you are. Not having control over your mind is the hardest thing I’ve experienced during this illness, other than not being able to relate the feelings to anyone. I’m not saying you have insulinoma, but I’ve experienced all the neurological and other symptoms you’ve described (except for the intestinal problems). I even went for a psyciatric evaluation. If some of your symptoms improve after you’ve had sugar, then don’t
be afraid to suggest insulinoma to an endocrinologist! They are so much more aware of the disease now. The diagnosis is fairly simple. I had my first “72 hour fast” that everyone talks about in a doctors office! You could even go buy a blood sugar monitor and test yourself when you’re feeling low, that should give you some idea. So, how do you feel if you don’t eat before going to bed? It could be something else, but I would definitely see an endocrinologist first. I wouldn’t even waste time trying to convince your regular physisian, if you can still get the appt. If not, then demand to see one! Take it from someone who was discouraged for years. It was the encouragemnt from people on this site that pushed me to find the answer. It took me over 16 years and they finally found and removed the tumor 6 months ago! You have to get to the bottom of this. You do not want to go on feeling this way any longer. I stongly encourage you to make another appointment..today! You can think of what to say later. I know it’s scary, but there will be some answer, and we’re all here for you.
I’ll be praying,
Peggy
Peggy

Friday, 15th August 2008 at 8:06 pm

Rachelle,

Did you ever get your questions answered? I’m sorry I missed your post somehow.
Your weight gain would be normal due to an insulinoma. Insulin causes you to store fat. My doctor said I was the only thin person he’d seen with the disease, and he’s successfully treated over 50 cases. I heard that the ocreotide was not the best test. I’ve also had two endoscopys and multiple CTs that didn’t show the tumor. But it was there all along! The 72 hour fast will help confirm the diagnosis..sugar levels are low when the insulin is high. But it takes the right equipment and the right radiologist to find the tumor!
Good luck
Peggy

Friday, 15th August 2008 at 8:09 pm

Hazel,

I hope you’re feeling better every day! Keep eating! :)
Rachelle

Friday, 15th August 2008 at 11:11 pm

Peggy,

Thanks for writing back. I thought my post was deleted. I am going to a new endocrinologist on August 29th per the advice of my gastroenterologist . I have had the appointment since May 12th. My stomach doctor insisted that I see him.
Hopefully, I will have a better experience with this doctor he referred me to.
It just took so long to get into him. Thank you for your info regarding the reliability of CT Scans, octreiotide scan, and endoscopy. My gastroenterologist shared that same info with me the last time I was in……that is why he really wants me to see the new specialist. I have heard that the 72 hour fast is usually what helps to confirm it.
I am keeping my fingers crossed! If this post makes it through I will give you an update after my appointment on August 29th. Thanks again for taking the time to write back. I thought I was deleted. I promise I won’t send any more novel length posts:).
Susie

Saturday, 16th August 2008 at 9:15 am

To Nicky,
This website is strange. I wrote a long email to you and hit the submit button and it never went through. I did have a whipple done, on Feb 15 of this year. Make sure your surgeon has done many of these. My surgeon has done the most Whipples in the U.S. Actually his speciality is repeat surgeries on the pancreas. Be prepared for a long recovery. Make sure you have someone to prepare your meals, watch the kids, clean your house. I couldn’t do anything for a very long time. You have to relearn to eat again. No more regular size portions. You will get very sick and throw-up if you eat too much. The nausea & vomiting, no one tells you about this is very unpleasant. I would wake up feeling fine and about noon time start feeling nausea the rest of the day. It does finally pass though. The biggest thing with this surgery is eating very small portions and cutting out foods that contain lots of fat. No fried foods, foods containing mayo, use low-fat or fat free versions, When I order Chinese food I ask for them to make it with no fat. The fat will give you horrible indigestion and dirrahea. If I wasn’t throwing up, I was having dirrahea.
After 6 months my digestive system has calmed down. But I’ll never be able to eat like I used to before the surgery. When we go out to dinner I split an entree or I just eat off my husband and kids plates. My surgeons say I’ll live longer by eating less.
Another side effect to this surgery is losing lots of weight. I have lost 40lbs. My insulinoma caused me to gain so much weight so the weight loss has been the one good thing coming out of this surgery and of course not having an insulinoma anymore.
I’ll be honest with you, I have had 2 C-sections, a hysterectomy and the first pancreas operation, the whipple is by far the worse procedure for recovery. It is a big surgery and usually lasts about 7 hours.
The doctors don’t tell you about the side effects to the surgery, I guess they don’t want to scare us.
But now I’m swimming 3miles a week, walking and lifting light weights. I’m so trim, and feel great.
Good luck with your surgery you’ll be fine. Let me know how it goes.
Susie
Janet

Saturday, 16th August 2008 at 2:03 pm

Persephonie!
What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow.

Love to all on this forum.
Janet xx
Janet

Saturday, 16th August 2008 at 2:03 pm

Persephonie!
What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow.

Love to all on this forum.
Janet xx
Homa

Saturday, 16th August 2008 at 11:01 pm

Hi Everyone
It has been a very long time since I have posted a blog here. For those of you who remember me, my surgery was successful. For those of you who are new and do not know me, I had insulinoma for six years. I was diagnosed three years a go. I had an unsucessful exploratory surgery done in 2006. I went to MD Anderson Cancer Center in Houston and had my surgery on January 16th. I had an angigram done the week before the surgery. When I went to talk to my surgon the day before the surgery I found out that I had multiple tumors. He said that he probably had to do a total pancreatectomy. You can imagine my shock. He also said that my spleen was larger than it should be so he was going to remove it. I was also scheduled to have an incisional hernia repair operation done right after the operation for insulinoma. I developed the incisional hernia after my first operation. My surgery lasted 12 hours. I had a total pancreatectomy, spleenectomy, had my galbladder removed and of course part of the stomach and duodenom, I can’t remember how to spell that one. the pathology result showed that I had 22 tumors all over the pancreas. My doctor was only able to see seven or eight of them the rest were too small to see. Dr. Evens, my surgon said that there has only been two cases documented of multiple tumors like mine. He said this before the operation. I don’t even know that those documented cases had as many tumors as I did. As a result of surgery I became diabetic I was in the hospital for two weks. My recovery period was very long and not pleasant. As susie said it, no one tells you about thie nausea and vomiting that folows. I was on anti nausea medicine for three month after surgery. It was quite an adjustment mentally and physically to come to terms with becoming a diabetic. I went from one extream to another. talk about drastic change in the diat. what killed me was everyone saying, well, this is better than what you had. I don’t see it that way, I went from one bad illness to another. granted I have more control over this, but diabetes has more of long term effect on the body. I stayed home for six month. I was supposed to go to work after two month, but I developed comlocations. I had a bile leakage. I had a cathedar put in for 4 month. I went back and forth to MD Anderson five more time after surgery for the leakage. considering what a huge operation I had, some kind of complication was to be expected. it could have been worse. I did manage to have my big beautiful wedding finally in June. Susan you were right, I had to get my wedding dress ultered again. I lost a total of 40 pounds. I just went back to work and I have an insulin pump now. which is great. I am starting to accept things and be thankful. because it could have been worse. I thought about you gusy a lot. I wanted to put a post, but my computer crashed. I have adaptive software that makes the font bigger and I lost that and had to wait to get a new software. so I am just now able to write to you gusy. I don’t want anyone who have not had their surgery be afraid of getting what happened to me. insulinoma is rare and what I had was the rarest of the rare. I always get weird things happen to me.
Peggy I am glad your surgery went well. How are youfeeling now.
Susie
I am curiouse about something. After having the wipple, do you have to take enzymes to help digest the food like I do. they really help in digesting the fatty food, even though I don’t eat too much fatty food.
has anyone else in here became daibetic after surgery or anyone had pancreatectomy? I would love to hear about your experience. I still experience twinges of pain here and there.
Lauren
How are you doing? I thought of you everytime I went to Houston.
Angie and Kim
I hope you guys are doing great.
nice to be back here agian
Homa.
Kim

Sunday, 17th August 2008 at 9:09 am

Dear Homa,

So glad to hear from you at long last. I am relieved to hear that you’re OK but it sounds like you have had a very difficult time and I am so sorry to hear about that. I guess you will be in all the medical journals. Why did they think your spleen was enlarged and have to remove it? Have you been able to handle the diabetes? Was it hard to learn how? You are very courageous and have a tremendous attitude to be able to be thankful - you have been thrown quite a curveball. I am so glad to hear that you finally had your wedding! I’m sure it was lovely.

Take care of yourself and keep in touch.

Kim
Susie

Sunday, 17th August 2008 at 10:21 am

To Homa,
Oh my G-d! You have really been through the wringer. I thought I had it bad. My surgeon always says to me we have been through the war together. My abdomen looks like a war zone.
Having Diabetes is difficult but manageable.
Millions of people have it and live very long lives, look at Mary Tyler Moore, she has Type 1 diabetes and is in her 70’s now. I didn’t know you were going to have a Whipple.
Did food gross you out after having the surgery? Odors of food reallly bothered me especially garlic to this day. And I can’t eat like I used too. I’m on Prevacid for the rest of my life to handle the stomach acids. I’m glad you are doing better and on the road to recovery. Take care.
Susie
Homa

Sunday, 17th August 2008 at 11:01 am

Dear Kim
So good to hear from you and thank you for the sweet responce. it means a lot. My doctor didn’t know why my spleen was enlarged. he told me about it the day before surgery. I was going through information overload at the time, just to digest the fact that I was going to have pancreatectomy. so having the spleen removed was the least of my worries. yes I have been through a lot, but I managed to overcome it. whatever doens’t kill you makes you stronger, right, smile. It was difficulty coming to terms with diabetes. my poor little body went from having too much insulin to having none. I have always been horrified of needles, and suddenly I had to give myself insulin injections four times a day. that was the hardest part I went though the stages of adjustment, getting upset, angry, depressed. I have come to accept it now. My husband is diabetic, so he understood what I was going through. His love and support and guidance made the world of difference. I did have to learn a lot about what to eat and what to do. I was blessed to have worked with people who are diabetic, so i had a good head start on it. It was just overwhelming in the hospital, with all this people coming to see you to teach you things. I wanted to say, leave me alonnee. I just went on insulin pomp last week. it is the greatest thing. no more injections. I am loving it. It is the latest pump so there is no tubing attached to me. the wedding was wonderful. it was not just the celebration of our union. It was a celebration of overcoming all the things that we had gone though for the last six month. I have lost so much wight, my dress actually looked good on me, if I say so myself. lol. that was the best part.
How are you doing? I bet it is nice to go back to a normal routine
keep in touch and take care
love
homa

dear susie.
I didn’t know I was going to have the wipple until the day before surgery. in a way it is good that I didn’t know, didn’t have it looming over my head and didn’t have to worry about it until right before surgery. that is good that you don’t have to take creon, the enzyme to help digest the food. I have been very lucky in regards to not having too many indigestions and upset stomachs. I did have it after surgery though, oh boy did I ever. the smell of food did bother me, and food had no taste. I have just started to get my appetite back after almost seven month. Are you still loosing weight? I guess this is a question for everyone who had surgery. for how long did you guys keep loosing weight? I think mine is starting to level off. I have not been able to buy clothes since surgery because I keep shedding the extra weight. I could be in one of those weight loss comertials like before and after. I had a bulging stomach because of the hernia. I looked like I was four month pregnent. My belly looks really good right now though. I am taking nexium probably have to take it indefinately. I am trying to look at things in the positive way. eating right and not eating much fat is something all of us need to do. in a way it is good that your body and mine doesn’t digest the fat, since it is not good for us anyways, right,
take care
Homa
Janet

Sunday, 17th August 2008 at 3:01 pm

Hi Homa!
And I thought I had had a bad time!! I too had my spleen removed when I had half of my pancreas removed with myfirst insulinoma. Still have the other half but have another insulinoma which I am taking diazoxide long term. However, I can imagine that going from one end of the spectrum to h other must be horrendous. I was told that if I have this second insulinoma removed I would have to have total pancrectomy and since I have already had pancreas op things would be quite complicated. You sound like you have really been through it. You are so so brave and I am honestly in awe of you, as I fear another operation as I had such a bad time.
Its great that you are trying to be postivive, its the only way forward and I admire you so much. God bless you and your brave outlook.

Love Janet xx
Homa

Sunday, 17th August 2008 at 7:11 pm

Dear Janet
thank you so very much for your sweet and touching responce. you are too kind. Sounds like you have been through a lot too. I can’t imagine going through all that you have been through and having the insulinoma coming back again, bless your heart. I have not been able to go through all the comments here, so if you don’t mind telling me. when did you have your first operation and insulinoma removed, when did you discover about the second insulinoma? what are they planning on doing about it? what hospital did you have your surgery done? My experience has thought me that going to the best hospital is the most important thing one can do. God knows it is a hassel to travel. I got so sick of flying to Houston every month. not to mention the expense of travel and all that good stuff. but in the end it was so worth it. I hope you don’t have to have another operation, but even if you do, it is not the end of the world. It would be hard and long recovery but it will pass. There is something positive in everything. during those dark days that I was recovering, I kept telling myself, at least it is not cancer.
I will keep you in my prayers. and stay strong and god bless you
love homa
Angelique

Tuesday, 19th August 2008 at 9:48 am

Hi everyone!

Homa, its nice to hear from you again. I read all of everyone’s mail but never seem to have time to reply. I had a partial - well, neck, body and tail removed as well as my spleen and I do take creons (enzymes) when I eat a big meal.

Question, has anyone been pregnant after surgery? I am almost 6 months and get a really bad pain on my upper left side towards the back. Also, I am always very constipated. Anyone out there with this experience?

xxx Angelique xxx
Laura

Tuesday, 19th August 2008 at 10:24 am

Angelique, I am also pregnant, fun huh? I had my surgery last summer August 2007 and I got pregnant in Feb 2008 so I am about 28 weeks. I have not had any strange pains, but I did discover that I have a hernia at my incision which means I have a huge bump right in the middle of my belly, very attractive. Of course, they can’t fix it till after the baby comes so I am sure it will continue to get more and more attractive. the only thing I was experiencing was the constipation, but I have been eating a ton of salads and prunes and now that is pretty under control. I have to tell you, I have been pregnant with the tumor before 3 times (this is my fourth baby), and for once, I am really looking forward to nursing. In the past, it was nursing that really triggered the hypoglycemia for me. The first time I ever had any symptoms was when I started nursing my second child and the symptoms always went away when I got pregnant again until the last time. Good luck!

Laura
Janet

Tuesday, 19th August 2008 at 12:22 pm

Homa,
Hi there. Thanks for your loving reply. My first operarion was in 1974 whenI was 17 tears old at Dudley Road Hospital in Birmingham UK, the surgeon was Professor Bevan. I had an insulinoma and half of my pancreas, my spleen and appendix removed. I had a recurrent insulinoma in 1995, and have been seen by several endrocrinolgists since then, and a surgeon, Mr Da Silva. An further operation was recomended by the endro but when I saw the surgeon he advised that because of the previous surgery he had serious concerns. I have had other opinions and decided to be treated by medication for as long as possible. I take a lot of diazoxide, 650 mg per day. Thanks for your encorougement it is very much appreciated. am very blessed as despite my problems I had a baby in 1985, before the second insulinoma.

Laura,
Congratulations on your pregnancy and Laura too. I had my son 11 years after partial pancrectomy, spenectomy and appendectomy. My pregnancy was really ok, I only had the usual preganancy pains. However, following surgery for about 10 years I occasionally had days when I had horrendous abdominal pain that was only relieved by going to bed and actually sleeping. This was no worse during pregnancy. Very very very occasionally I still get these pains but not quite so severe, it is a small cross to bear and I am so blessed to have a healthy son, as durin prenancy I had been advised by medic to have a termination because of the medication I was taking. My prayers are with you and everyone.

LOve Janet xx
Janet

Tuesday, 19th August 2008 at 12:24 pm

That message entitled Laura was meant for Angelique! But its also for Laura and everyone else. Sorry!
Nicky

Wednesday, 20th August 2008 at 9:25 pm

Hello everyone I’m back! My surgery was on the 5th August and was a success.
Obviously the powers that be were keeping an eye on me because the team that worked on me were outstanding.I had an appointment with the surgeon Prof. Andrew Biankin at Bankstown/Lidcombe Hospital Medical Centre Sydney,on the morning before the surgery.This was the first time I had met him,we had previously spoken by phone.We discussed what the scans had shown and he drew us some images of what he’d planned to remove.I already knew that a whipple was planned and he told me that unless he was surprised at what he saw when they opened me up that I shouldn’t expect anything less.
Prof.Biankin has an affiliation with the Cancer Council Australia and has a dedicated team of surgeons that specialise in pancreatic cancer surgery. So given this information I had to leave myself in his capable hands and pray for the best.
On the morning of the surgery I’d be lying if I said I wasn’t scared,I didn’t know if when I woke that I would be diabetic and what my quality of life was going to be like so the nerves did get the better of me for a time.By the time I was being wheeled off to be prepped I had regained my composure and focussed on my recovery and thought about my wonderful husband an beautiful girls.
I had an epidural put in to help with pain and was ready to rock an roll.Next thing I remember was asking someone for help but I don’t really remember the pain,apparently the eppidural wasn’t working when I awoke and it took a half hour or so to fix. Then I was in ICU. Ideveloped an intollerance to the octreotide injections they gave me every 6 hours to help with the healing and was violently ill but we soon figured out a regime of anti nausea meds to go with it and it was bareable.I spent the first 4 days in ICU and was then tranfered to surgical ward for a further 7.
When I became alert in Icu I could hear my husband say “it’s 5 o’clock” and my relief was indescribable, I was expecting a longer op. for a full whipple and it had only been around 5-6hrs so I was sure I would be OK.As it turned out the tumour was 10mm and in the lower head of the pancreas.The took my gallbladder and put a balloon down the duct to see how close to the pancreatic duct the tumour lay.There was enough room to safely excise the tumour so they did. The hole was too large though to stitch back up so a piece of bowel further down than the duodenum was grafted up to cover the hole and the plumbing was rewired a bit so I had a partial whipple leaving my stomach intact.I have up to 85% of the pancreas intact and have no diabetes.
I have had a bit of diarrhoea and wind but now 2 weeks later can eat small meals without too much hassel.I’m still figuring out the fat/oil issues.I’ve lost 7 kilos from my 19 I gained which is encouraging.The wound looks a bit like the Sydney harbour bridge following the line of the bottom of my ribs and isn’t anymore painful at this point then when I had my c-sections, I’m only taking paracetemol for pain. I am truly lucky and grateful to my team for giving me my life back.I’d forgotten how it felt to be hypo free.If anyone in the Southern hemesphere needs a referal to my doctors don’t hesitate to ask for details they really were the best.
Susie
Thanks for the info it was very helpful I’m sure my eating habits will have to change just not as drastically as yourself,best wishes to you.
Hazel
Goodluck with your up coming surgery,it’s a pity you have to travel so far but it will be worth it.
Sorry this was so long but I wanted to give details and let you all know I’m well.
Nicky
Hazel

Sunday, 7th September 2008 at 10:16 pm

Hi everyone,

I’m pretty well fully recovered from my thyroid surgery and am almost back to doing everything I was doing before. I’m getting a few strange looks as my neck scar is so visible and so new but it’s not that big and I can see it’s going to heal well. Hopefully all of that is behind me now!

As for my tumour, if all was going to plan I’d have arrived in LA today and would be meeting the surgeon at USC tomorrow. However, I’ve been rescheduled to have surgery around Oct 14th so will be going in about five weeks from now. I still need to get confirmation of this date but right now that is what I’m working towards.

Nicky

How are you feeling now? I do hope your recovery is going well. I was so very pleased to read that you have kept so much of your pancreas. It really sounds like you had surgeons with great experience operating on you. All the best to you.

Hazel.
Janet

Monday, 8th September 2008 at 5:53 am

Hello everybody.

Nicky and Hazel,

Glad to hear that you are both recovering from your surgeries and thanks Nicky for such a comprehensive post about your surgery, really pleased you have done so well Haxel. glad your thyroid surgery is now well behind you, and your scar is all part of you and as time goes by should fade quite a lot. Glad to hear you have a reschedule date for mid October, the time will soon go and you will be able to look forward to getting your life back on the track you are striving for. Keep being strong which I know you will. Love and prayers.

Janet
Peggy

Monday, 8th September 2008 at 8:38 pm

Hazel,

I’m glad you’re feeling recovered, I’m sure you are anxious to have your tumor removed. So was the surgery rescheduled just recently? Is there a reason for that, or are they just giving you more time to heal? I imagine having another surgery so close will be hard on your body..but you will be in competent hands.

Nicky, isn’t it wonderful to be “hypo free”?!!
Hazel

Monday, 8th September 2008 at 10:16 pm

Hi Peggy,

I was all ready to fly to LA on Sunday 7th to have surgery this week, but on Thursday USC called to reschedule as Dr Parekh was going to be out of town for most of September. It is a lot of re-organising each time my surgery is moved but I’m hoping third time’s a charm!

I am very keen to get this tumour taken out but will try and be a ‘patient patient’ for the next five weeks. The anesthetists at USC were fine about doing my surgery this week seeing as it is four weeks since my thyroid surgery which is apparently the minimum time to allow between surgeries. I have to say I appreciate your assurances that I’m going to see the experts!

I do hope you are continuing to do well.

Janet

Thank you for your love and support.

Pamela

How are you getting on? Are you still improving? I hope the surgery, the weight loss and the exercise are all helping you get back to being fighting fit!

Hazel.
Hazel

Monday, 29th September 2008 at 6:16 pm

Hi there,

Well my surgery has been rescheduled yet again. This is due to the surgeon planning to be out of town when I was due to have my surgery on October 14th. I am now booked for surgery on October 28th which is about four weeks away. This is my fourth surgery date and I’m hoping this one will not be changed as it feels a bit like each time I get close to my goal, someone shifts the goal posts! My dream is to feel better by Christmas so hopefully I’m still on track for that.

Hope everyone is doing well.

Hazel.
Kathy DL

Monday, 29th September 2008 at 10:43 pm

Hello everyone. I am new to this but have been reading your messages for a few weeks and seem almost addicted to all your postings. I am so glad to find you. What amazing people you all are. I have been going through the typical symptoms that I have read so many of you have since at least Dec 2007 and have had enough of it. Those of you who have suffered for years & years, my heart goes out to you. You are all such strong people! Recently i was told by a specialist in Phiadelphia ( I am from New Jersey) that he suspects Insulinoma. 72 hour testing is scheduled. What I can’t seem to find anywhere is what causes this? Is it from something that I may have done for me to develop the Insulinoma? All I have heard from people is “do you smoke?”. Not the case with me and I’m sure the dogs, cats & ferretts that keep popping up when i try to search the web never smoked as well. If anyone could help me with what causes Insulinoma, I would greatly appreciate it in laymans terms as my ” brain fog” and confusion sometimes gets the best of me ( which tears me apart, as I was in the 150 IQ club in my younger years). Thank you in advance for any information you could share with me. God Bless you all. -Kathy DL
PS: Where did Dr Jon Mikel ever go? I haven’t read anything from him dated currently.
tatia batz

Tuesday, 30th September 2008 at 12:04 pm

Hello,
It is great to finally find other people who in a similar situation as myself. I am 35 years old and have been suffering symptoms of an insulinoma for almost a year. Over the past 3 months I have undergone several tests to try to find the insulinoma but have not been successful in locating it. I just had an upper endoscopy last week in which nothing was found. I am meeting tomorrow to see about doing the pancreas stimulating test. My biggest problem is not finding anyone in my city that is able to help me. I live in the midwest and have found several hospitals over the internet that on both the East and West cost that might be able to help. Does anyone have any info on where to go for a diagnosis and the equipment to which could help find the insulinoma? Until someone finds this I am not able to get anywhere. I need to go somewhere that knows what they are doing are able to find a hiding insulinoma. I would appreciate any help anyone has for me.
Thanks
Tatia
Nicky

Tuesday, 7th October 2008 at 3:28 am

Hi everyone,I’m back again,sorry it’s taken so long to get back to you.
Thanks for all your good wishes they’re really appreciated,talking to you all is like having another global family with a special connection that not many people know about.
Well I’m now 9 weeks post op, I can’t really believe that because it seems a million years ago to me now. I had a nasty case of flu a week after I got home which I could have done without,the coughing made me feel like my tummy was going to burst.I also had to take a course of antibiotics which gave me awful diarrhoea.In fact the first 5 weeks was pretty much diarrhoea but it settled thank goodness.I also had a blood test done to see how I was going and I had extremely low iron.I was getting dizzy and tired after only waling for an hour and I thought for a second that my hypos were back but after a couple of weeks on iron supplements I started to feel much better.
Actually it was quite funny because about 2 weeks after I got home I was talking to my husband when my tummy grumbled and I suddenly realised that I was feeling hunger. I don’t know about you guys but I hadn’t felt hungry in almost 3 years,I think I’d forgotten the sensation so I had a little chuckle,You normally ate before you got a chance to be hungry.
Having no gall bladder has been interesting,I have to work out what sits well and what dosen’t and cucumber and cola drinks definitely don’t.My tummy gets distended and very sore but so far most other things are good.
I’m feeling so good now, the swelling is going down over my tummy although I have a beauty of a scar but I can live with it ,it reminds me of the second chance I’ve been given.I get out more and walk more but I still have trouble with a full shopping trolly and to top it off I’ve already lost almost 10kilograms.

Hazel it seems your not having much luck with a surgery date ,I had mentioned this forum to my surgeon when I was in hospital and he said he’d be happy to help anyone so if you want contact details let me know.The sooner we get you well the better. I also had a relative who had thyroid cancer quite young but you can hardly notice she has a scar. I’m sure everything will fall into place for you and by Christmas you’ll be a new woman and what a great New Year you’ll have,hold onto that thought and best wishes to you.

I will be sure to keep in touch so good luck to all those awaiting treatments and tests and take care till next time
xxxNicky
Janet

Tuesday, 7th October 2008 at 7:29 am

Hi People!

Sorry to hear Hazel that your surgery has been postponed again, you must be getting pretty restless waiting for the date. I hope and pray that October 28th will see you get your surgery completed so that you can get on with the rest of your life; you must feel as though yourlife is on hold rigth now, just try to stay focused and hang on in there, it will soon come. Hopefully by Christmas you should be all done and dusted! Keep the faith!!
Nicky, thanks for your update. Its great to get such comprehensive feedback on your surery/condition. Your surgeon sound pretty cool! Glad you are doing well.
Love to all.
Janet x
Gayle Mielke

Friday, 10th October 2008 at 8:06 pm

Tatia
I am also from the midwest. My insulinoma was found at the University of Iowa Hospitals. My laparoscopic surgery to remove the insulinoma was done in July of 2007. Great place. I know the Mayo Clinic in Rochester would also be a great place to go. Good luck.
tatia batz

Saturday, 11th October 2008 at 7:15 am

Gayle,
Thank you for your response! I have been hearing about the University of Iowa. I think there were other people on this blog that have had their procedures done there as well. Since writing a couple of weeks ago, my insulinoma has been found! I am greatly relieved and ready to move forward. I went to have another upper endoscopic ultrasound done at Washington University or Barnes Jewish Hospital. It is 11-12mm, about a 1/2 ” in size. I am meeting with a surgeon there next week to discuss the options. The insulinoma is in the body, close to the tail by the pancreactic duct. I have not spoken to a surgeon yet but am leaning toward having it cut out as apposed to enucleation. Gayle I would love for you to share your experience and your doctors and surgeons if you don’t mind. I understand if you do not want to give names though. I find all of the info I have found so far as been on this blog and I can’t tell you how helpful you have all been. I hope you are doing wonderful and have a new zest for life! Thank you again for your response.
Tatia
Angie

Saturday, 11th October 2008 at 8:50 am

HI to everyone

Ive been reading all the posts that come in but as its been soo long since ive posted I didnt have the time needed to catch up!

Homa - glad to hear you are doing well, sorry i didnt get back to you when you posted - you have really been through it but sounds like you are getting there at last. Glad your wedding went well you definitely deserve it!

Its the things they dont tell you as you said, I think its cos we’d panic and not go through with the surgery. I thought diabetes would be worse to control but I suppose they think they can control it better than the insulinoma as its so unpredictable!

I was very very lucky not to have had to have that extensive surgery!

Im fine, still swimming every day and doing yoga now to strengthen my abdomen which is still fairly weak after all this time. I have twinges where my gall bladder was and unknown aches and pains from my insides. Doctor doesnt seem to think its anything to worry about so Im not!

So many times I think - “i couldnt have done that” or “I would have had to eat by now” its weird how you recover and life is so different! Keep well and lots loveX

Hazel - So sorry to hear your surgery has been postponed again - at least the longer you wait the stronger you will be after your thyroid op! Not really any comfort tho!! Hope to hear it all goes off on the 28th! Good luck and thinking of you!

Kathy - Insulinoma is luck of the draw I think. If you have rogue cells and they multiply in the wrong place you end up with a tumor - you can have insulinoma tumors in other places in your body which is why they often test the whole body for insulin secreting cells. (calcium infusion test) Sometimes these can be causing the high insulin problems and are not detected because they are in other parts of the body not where they are generally looked for in the pancreas. (does that make sense??)

Nicky - gall bladder problems oh yes - but I didnt know they had taken mine till 6 weeks later - then it all fell into place - why I had pain and digestion problems. Its all settled down but certain meals do give me problems - nothing serious just “oh yea upset stomach no gall bladder!! whoops - must remember not to eat too much chinese!” Thats without having a whipple!

Peggy - glad its all over at last and your are doing really well!

Tatia - an enucleation of the insulinoma is having it cut out! Its the way the tumor grows inside a sort of cover which they can then slip it out of - i believe. There is no alternative surgery than having it removed. Its what they have to take away with it that makes each surgery different. Because my tumor was very close to a blood vessel and an enzyme tract, they were not sure if they could just remove it or if they would have to take away part of the pancreas and have to do a whipple. It depends where it is as well.

You need to talk to your surgeon and ask everything you can think of - even if its silly to you. Ive given this advice before - make sure your surgeon explains everything so you know what he aims to do. Good luck - there is always someone on here that can answer your questions and worries. Most of us have been through this recently and want to help.

Socel Saycon - So sorry to read your problems, I hope you are able to get your mother the operation. Insulinoma can be treated with tablets but as most of us who have been on them know they are not very reliable although they help. You need to get her treated some way as she will not get better on her own. I wish you good luck.

I keep missing posts but catch up eventually, wish everyone good health and good luck. X

Angie

Yes where is John?
Angelique

Saturday, 11th October 2008 at 10:56 am

Hi everyone! I am now 32 weeks pregnant and going through a lot of pain upper back/left shoulder blade where my pancreas used to be. Cannot sleep at night now. I wonder how Laura is doing? She must have had the baby by now.

Welcome Kathy and Tatia and all new readers out there. Tatia, the good thing about your diagnosis is that they know exactly where it is and it makes surgery so much easier.

Hazel, I am keeping my fingers crossed for you planned surgery. Hope all goes well. Love to all xxx
Laura

Tuesday, 14th October 2008 at 5:57 pm

Angelique-> I wish I was done! I am 37 weeks so 2 more weeks to go! I have not had any strangeness with this pregnancy. It is however the best information I have gotten on my self diagnosis as to when I got this tumor. For my first 3 pregnancies, my glucose test came back in the low 70’s which is very low for that test but not off the chart. For this pregnancy, I was 120 which is much more normal. Strange thing is, I did not start noticing symptoms until after my second pregnancy, so I am still not quite sure when it developed….
Laura

Tuesday, 14th October 2008 at 6:09 pm

Kathy DL- I have not read anything anywhere about what causes these awful tumors, but I am led to believe it is not lifestyle by my doctors.

Tatia- Dr. Matthews at the University of Chicago is fabulous. It really does matter what hospital you go to to get a good diagnosis. I first went to Northwestern and their MRI was too blurry to find anything and I thought they were a good hospital! As far as having it “cut out” vs and enuculeation (sp), enucleation just means removing the tumor vs removing the pancreas or part of it. As far as recovery and pain levels are concerned, you definately want the enucleation, but it won’t be your choice, your surgeon will determine what needs to be done. One thing I cannot stress enough is you need a surgeon who has done a lot of these. It is a very complicated surgery and since they are so rare, it is hard to find doctors who are experienced. For my surgery, the staff could not say enough good things about the skill of Dr. Matthews, they said anyone else most likely would have done the whipple…..
tatia batz

Tuesday, 14th October 2008 at 7:46 pm

Hello everyone,
Thank you so much for your responses Gayle, Angie and now Laura. I would love to hear how you picked your surgeon and where to have your procedure done. I am looking at a surgeon from Washington University in St. Louis, MD Anderson and John Hopkins. Wash U is the closest to my home and they actually found the tumor. How do I know if the surgeon is experienced in this type of surgery? If they have done many whipple procedures are they qualified to do a distal pancreandectomy or removal of the insulinoma? Or do they need to be well experienced in removing all types of tumors, insulinomas from the head, body and tail of the pancreas. I really have many questions but am worried I will not ask the right questions. I know it is best to go to a large center in the country that does this, which ones are the best? Any input anyone has would be really helpful and greatly appreciated. Hope everyone is doing well either recovering or getting prepared for surgery or staying on top of trying to get a diagnosis.
Tatia
Laura

Tuesday, 14th October 2008 at 8:04 pm

Tatia-I think the most import thing is to as the surgeon how many times he has operated on the pancreas. Does he do any other types of surgery or only the pancreas? How comfortable is he with the whipple? (The whipple is the most complicated surgery of the pancreas so technically if they are experienced with that procedure, the others should only be easier) On the flip side, I told my doctor he should put on his resume how many whipples he has not had to do which other doctors would have done. I know Dr. Cameron at Hopkins has done more whipples than anyone, but could any of those been enuculations? there is no easy answer here. You have to be very comfortable with the person is the key. You do not want a general surgeon, you want someone who only does pancreas. Good luck!
Jon Mikel Iñarritu

Tuesday, 14th October 2008 at 10:28 pm

I’m here in backstage reading your interesting comments.
Best of all for everyone.
pamela

Wednesday, 15th October 2008 at 9:09 pm

Hello everyone and newcomers!
i am going to try writing this again… for the third time in a week! I have had horrible luck trying to submit my blog, and so each time have to start over! It seems as though i disappeared , but i just have been so busy with my first daughter starting school, and all the activities my girls are in, me and my family moving from one house to another…… but one thing is for sure, i would have never been able to do all of this if i would have still had my insulinoma! I have so much energy now.
There is so much i want to say to everyone! I have missed out on so many conversations! so i will have to jump back in and not get so behind!
To Homa: WOW! i cannot believe all that you have been through! I know several of you have had these similar experiences, and reading of Homas battle just makes me feel as though i went to the hospital for a hangnail! I hope your recovery is coming along, and each day that passes is a little easier than the last. My mom was diagnosed with type 1 diabetes type 1 shortly after i was born 36 years ago. She is still running strong!! Although living with diabetes is challenging and sometimes difficult, i am sure everyday you will improve more and more, and you will become to understand your body and its needs with diabetes, then things will become more routine and easier for you! I was so happy to hear you were married in june. Congratulations on that homa! Stay strong!
Hazel,
Darn those doctors! Lets get that thing out! I am praying that the 28th is your magical day! Then there after some recovering you will be healthy and ready for christmas, and the new year, and your new life! we will be waiting for you to cross the road to health.
I have more that i want to write but i am going to try and submit this part before is disappears!…….then i will come back!!!
Pamela
pamela

Wednesday, 15th October 2008 at 9:37 pm

Okay here i am! im back!
To Laura and angelique, congratulations on your pregnancies!!Do you all know what you are having? Its good to know a normal pregnancy is possible after having an insulinoma removed.
Nicky, i am so glad you are coming along with your recovery. You are not to far behind me with your surgery. Like you said it is weird when your stomach growels! Before my tumor came out i had become to hate food! I dreaded every piece of food i had to put into my mouth because i was so full and so tired of eating when i was not hungary! Now i love food it all tastes so good! Breakfast, lunch, dinner…… snacks..and even an occational glass of wine, which i could not have had before!
Tatia and Kathy
I am so glad you have been diagnosed and are on the right road to being healed. It is such a journey, but you all finding this web-site and getting the help and advice from all that stuck by writing to this blog will be more than comforting and feel less so alone!
To: Janet,Peggy. Susie, Penny, Laura, Angie, Kim, and Gayle….
Without this wonderful dedicated helpful group, i dont know how i would have got the support and much needed advise and help that i did! I hope that all of you are living happy and healthy!
my thoughts are with you all always!! Thank you too!!!
Homa i forgot to ask you what is an incisional hernia is?

prayers to everyone!
Pamela
Angelique

Thursday, 16th October 2008 at 12:06 pm

Laura,

Not long to go now. I wish I were 37 weeks. I’m only 32 weeks but last night the pain was so bad, I wanted the baby out and lots of gas & air. Are you having lots of pain around your scar area? I had most of my pancreas removed and apparently I have staples from my left abdo to behind my left breast towards the back. That is where I get my pain. I hope you have a good labour and hope it all goes really quickly. Let us know when you had the baby.

Pamela,
I am having another girl. I already have a three year old girl called Aimee. Can’t wait to see this baby, and hopefully the pain will be gone after the birth. The professor who did my op 5 years ago will see me in two weeks time, but I have to travel to Spain which is a four hour train ride. I hope I don’t go into labour there!!! That would mean delivering the baby in a foreign country as Gibraltar is a British colony even though we live beside Spain.
Homa

Thursday, 16th October 2008 at 7:38 pm

Hi everyone
I just wanted to let you guys know that I am probalby going to have another surgery soon. My hernia is back. I have not done anything that I was not supposed to do. I didn’t even lift a loundry basket for the first six month becuase of the catherdar. I am going back to MD Anderson to see the plastic surgeon who did my incisional hernia repair last january. after going through all I have gone through, hernia repair should be nothing, but I am tired of having surgeries. I was just starting to get my flat tommy back and it is petruding again. I will find out next week if and when I will have the surgery. wish me luck

Angie
it is so good hearing from you. Our girl angie here is the one that started it all in here but posting her comment and sharing her experience, and for that I thank you. I am glad to hear that you are doing well. Thanks for sharing about how you still have ocasional pain here and there. I don’t get it that much, but sometimes just start hurting out of no where and then it goes away. I wish I could start excercising, but I am not supposed to work out right now. Keep in touch and stay in touch
love xxx
Angelique:
I am sorry to hear that you are hurting. It will be worht it though to have your beautiful baby. Thank you for telling me about how you are dealing wiht not haivng much of a pancreas. You mentioned that sometimes you take enzymes. That is good that you don’t have to take it all the time. I have to take it even when I eat a snack. In the last nine month since my surgery, i only forgot to take it one time and I had indian food, needless to say that I paid for it, but it is not that bad though. Good luck with your pregnancy and keep us posted as to the arrival of the little one

Pamela
Thank you for your sweet responce. I am glad to hear that you are doing well. We start really appreciating our health when we go through something, don’t we. Thanks for telling me about your mom. I know being diabetic is not the end of the world, but it sure takes some adjustment. I am not sure if it is better than insulinoma but at least I don’t have to worry if I would wake up in the morning or not. Good to hear from you and stay in touch
tatia
Finding a big medical cneter with a doctor that is experienced is the most important thing. It would even be better if your doctor has removed insulinomas. I did my surgery at MD Anderson and I would strongly recomend it. I have been though a lot and have gone to so many hospitals for this and other health problems, but i have never been to a nicer place than MD Anderson. they are wonderful caring special people.Becuase it is a hospital that deals with cancer, they are experienced in dealing with tumors and they are sooo compationate. The doctor that did my surgery is Dr. Douglas Evens. He does a dozen of insulinoma surgeries every year. Lauren, has also done here surgery with Dr. Evens.
Goding to a hospital in another state is not easy, I live in North carolian and I cna’t tell you how many times I had to travel to Houston last year, but it is so worth it. The problem with insulinoma is that it is so small that even if they find it with the imaging tests, it may still be hard to find once they get in there. So all the more reason that you want someone who has lots of experience in performing this type of operation. If you decide on MD Anderson, let me know. I will be glad to help in any way I can.
Best of luck to everyone
Homa
Hazel

Friday, 24th October 2008 at 9:42 pm

Hi everyone,

Well, this time our trip is going ahead and we fly to LA tomorrow. It’s a 12 hour flight but is direct so it’s really just overnight. We’ll arrive Sunday and I have a CT and a meeting with Dr Parekh scheduled for Monday. If my surgery is going ahead it will be at 7.30am Tuesday LA time, but it could be later in the week depending on whether or not Dr Parekh wants to do any further testing. They had mentioned this when booking past surgery dates so I’m half expecting to wait a few more days, but hoping I won’t!

Nikky and Pamela
Many thanks for the well wishes and so glad to hear you’re doing well.

Angelique and Laura
Congratulations on your pregnancies but sorry to hear you are in such pain Angelique. So encouraging to know pregnancy is possible after these tumours.

Peggy, Janet, Kim, Angie
Thank you so much for your well wishes.

Homa
So sorry to hear you have to have another surgery. You’ve had a truly awful time of it by the sounds of things but you have shown so much determination to get well. Best of luck with your upcoming surgery.

Will keep you posted when I can.
Hazel xx.
Kim

Saturday, 25th October 2008 at 5:59 am

Hazel,

I am so glad that you finally have a date set. The waiting is so hard! Especially once you know what the problem is and you just want to get it fixed!

I’ll be thinking of you. You will be in good hands, that is the best part.

Keep us posted!

Kim
Kim

Saturday, 25th October 2008 at 6:02 am

Homa,

So good to hear from you. I am sorry that you have to get your hernia fixed. Is it possible that that can be done laparascopically? I hope so.

You have been through so much. I hope that you have a quiet year ahead to focus on healing and being a newlywed!

Kim
tatia batz

Saturday, 25th October 2008 at 2:06 pm

Hazel,
You do not know me, I am new to this blog. I posted my first blog right after you back at the beginning of October. I read that you had to postpone your surgery 4 times. The day has finally come for you to turn the corner and begin the recovery process. I am so excited for you. I will be thinking of you this week and wishing you a fast recovery. Since my first blog, they have found my insulinoma and I plan to have surgery in early December. You have waited a long time for this to happen and I know you will be on the up and up soon.
Tatia
pamela

Sunday, 26th October 2008 at 10:01 pm

Hazel,
i am thinking of you during this time…….and hoping the surgery is done on the date you are waiting, and that you will be better and healed after a short recovery time! Goodluck to you, and my heart and prayers are with you,
Pamela
Peggy

Monday, 27th October 2008 at 3:56 pm

Hazel,

I hope you have access to a computer! I am anxious to hear how the appointment went today….hopefully you are on for tomorrow. Let us know if you can, otherwise I just might have to find someone to drive to LA with me and see how you’re doing for myself! :)
My prayers are with you.
Peggy
Hazel

Monday, 27th October 2008 at 9:47 pm

Hi there,

I do hope this gets posted as I am logging on from another computer. Today I had the CT and met with Dr Parekh. He and his team were very friendly and reassuring. We planned to go ahead with surgery tomorrow and I got to the hospital to do the pre-admission tests but while I was there I got a call from Dr Parekh who reviewed my CT and was unsure if it shows a tumour or something else. He is going to wait and speak to his radiologist on Wednesday and will let me know what’s happening from there. If the radiologist says it looks like a tumour I’ll get surgery but if not I’ll need to do further tests at USC such as ultrasound. I am disappointed to be rescheduled by appreciate Dr Parekh’s caution.

Many thanks for your support.
Hazel.
pamela

Friday, 31st October 2008 at 1:45 pm

Hazel,
I am wondering if they did surgery as planned, or needed more tests. Let us all know soon as possible either way! Best wishes to you…
Angelique,
how are you feeling, and did you get to see your doctor in Spain? Hopefully you are feeling better! Im sure you are so anxious to have your baby, as all woman are especially towards the final weeks, but being in pain makes it so much harder! Congratulations on expecting another girl! They are so much fun, ……… and expensive!!! Ha ha. Let us know how you are feeling.
Laura,
Has number 4 arrived? If not, any day now i guess??? best wishes to you as well?
Hazel

Friday, 31st October 2008 at 7:21 pm

Hi

Well I’m heading back to New Zealand without having had surgery. After having the CT on Monday I had an abdominal ultrasound which showed that the shadow they had thought was a tumour was in fact an aneurism. This is something quite dangerous as it is on my artery going to my intestine and could rupture. I need a vascular surgeon to operate on this so have to do this back in NZ as it would be extremely expensive to do in the US. They can possibly treat it with a less invasive method by going up an artery and I’m awaiting a call from Dr Parekh who was finding out if this was possible.
I haven’t had any further tests for insulinoma as Dr Parekh said their CT was so good at finding tumours there was only a small chance I’d find anything by endoscopic ultrasound etc. As I’m not insured these tests would work out to be very costly.

I’m pretty devastated by will be fine.

Tatia

I am so pleased you have found your tumour and I’m sure you’ll have more luck than me. All the best for your surgery which is not far away now. I hope it brings you back to great health.

Hazel.
Peggy

Saturday, 1st November 2008 at 8:51 pm

Hazel, Wow, I can’t imagine how you are feeling right now… Does this aneurism have anything to do with how you’ve been feeling all these years? And if not, then what explains that? I assume you only saw the surgeon so he probably couldn’t answer those questions. I suppose if a tumor was at fault all those years then it would’ve grown big enough to see by now for sure. I don’t understand aneurisms, but do you know how long it’s been there? I know it’s not much consolation after making the trip and hoping to go home healed, but if they hadn’t thought it was a tumor and you hadn’t come here, you may not have been diagnosed before it ruptured! Maybe that is the case with finding your thyroid cancer as well?
My neighbor who had the thyroid cancer offered to drive me to LA to see you. I wish I could’ve made it. I’m sorry I have so many questions. I’m sure you have a lot to think about right now…I have to say, for being through so much you have an incredible attitude. Keep the faith. I will continue to hold you up in prayer.
Peggy
Lynn

Thursday, 6th November 2008 at 9:25 am

I found this website and feel like there might be some others who understand. I decided to write to the Mayo clinic directly. Has anyone heard of symptoms similar to mine following gastric bypass?

I am an intelligent professional and am becoming increasingly frustrated with my daily life, particularly my symptoms related to mental confusion, mood swings, weakness, and very low blood glucose (low of 32).

Here is a brief synopsis of my problem:

I have struggled with my weight all of my life. In my teens and twenties I have unexplained absence of menses for approximately 10 years. Starting in my teenage years I began to suffer from low level depression. In my twenties I suspect I started to develop mild hypoglycemia (headaches, lows in the afternoon, daytime sleepiness, shakiness, followed by relief of eating something sweet). I went on every diet imaginable. I had the most success on a low simple carbohydrate diet with frequent small meals.

In my 30s I began to have huge shifts in mood, sometimes on a day to day basis. I was seen by a pschiatrist, placed on antidepressants and lithium, which caused me to gain weight (250 to over 300). At age 35 I found out my birthmother (I was adopted at birth) died of ovarian cancer. An ultrasound was done due to my weight (approx. 280 at the time). It was discovered I had a large ovarian mass which was possible malignant. It was not malignant but I agreed to total hysterectomy due to family history. My maternal side has no significant history for endocrine disorders but I don’t know who my bio father is.

In July 2004 I elected to have gastric bypass (RNY). I began to lose weight rapidly but almost immediately developed periods of faintness. This was attributed at first to low blood pressure. My blood pressure medication was reduced and the problems subsided somewhat. My highest weight was 307. On my surgery date I weighed 277. I lost down to a low 199 in one year, which is where I plateaud. After about 6 months I began to develop severe hypoglycemic episodes. This was confirmed when a colleague I work with did my blood glucose and it was 40. I also bought a glucometer and documented a few incidents myself. Usually these episodes are following breakfast or in the middle of the night, usually induced by exercise, excitement, or nervousness (such as before an important meeting). I was able to control them most of the time through lifestlye/dietary changes, but lately the episodes are increasingly uncontrollable.

At first I experience a rapid heartbeat, sweaty palms, a feeling of impending doom, and weakness. Then it is followed by shakiness, a feeling that I’m going to faint, mental confusion, blurry vision, slurred speech, and one time I fainted. I eat something sweet, usually juice or candy, then I am extremely ravenous, usually eating a peanut butter sandwich. In the most severe cases (5 or 6 times in three years), I have fallen into a deep sleep for a couple of hours following the episode. Seizure is a possibility as I have lost my memory in these episodes.

My psychiatric symptoms have increased following the bypass. This doesn’t make sense as I feel so much better except for my blood sugar regulation. But I have experienced increasing problems with memory, concentration (I’ve started taking Concerta), insomnia, depression, and moodiness. Four weeks ago I had a very severe blood sugar attack. I came close to losing consiousness. I didn’t have a glucometer with me but I was dizzy, disoriented, had slurred speech, couln’t walk, and blurry vision. I drank juice and ate a donut. I slept in my car for a couple of hours and the rest of the day was very weak and shaky.

The following week I experienced some major family problems and ended up being hospitalized for depression for six days. On my last day in the hospital, I had a hypoglycemic attack following a Raisin bran breakfast. I experienced all of the above symptoms. All of the staff were at a staff meeting except for a nursing assistant. I convinced her to take my Blood glucose. It was 32. My BP was 90/40. She gave me juice, peanut butter and crackers and I slept for three hours. When I woke my BG was 95. I was released that day and told to see my PCP.

I called the gastric bypass center. They said I needed to see an endo asap or go to the E.R. I couldn’t get in to see anyone without a referral and I couldn’t get in to see my Pcp until today. I went to the ER and they did nothing except tell me to see a local doctor. I went to see him. He had me come in yesterday after a night of fasting and fast all day until 2:30 p.m. My glucose level maintained itself (77-99). He did some bloodwork and said he’d call me today. I asked if a 72 hour fast was indicated. He said no. He hasn’t called me.

I went to my PCP today who is referring me to our state university endocrinologists. The earliest appointment is January 2nd. I showed him a couple of articles regarding NIPS and insulinoma. He agreed it’s probaly my problem but wouldn’t agree to a direct referral to the Mayo Clinic.

My attention/blood glucose problems have caused me the following problems:

I have forgotten speaking with colleagues, my boss, etc.
I’ve almost been in several car accidents.
I have a hard time reading, completing paperwork.
I go back and forth from being hyper to sleepy.
I have a hard time sitting still.

I have been off work for several weeks and I’m supposed to go back on Monday. Although I want to, I’m afraid my condition is interfering with my ability to perform my job. I’m afraid to be alone. I’m afraid to drive. I’m afraid to be without food and glucose tablets.

Also, I am constantly hungry. I have gained over 30 pounds in the last six months. I maintained from 200-205 for a couple years. Recently I hit 248. I have since lost about 10 pounds since trying really hard to watch my diet since last week.

Has anyone experienced similar symptoms?
tatia batz

Thursday, 6th November 2008 at 6:50 pm

Hazel,
I hope you have returned home safely. I am sure you are glad to know what is wrong but probably a little confused too. I am not aware of an aneurism located in the pancreas or digestive tract. I am assuming it is in a blood vessel located in the pancreas? Would this aneurism act like an insulinoma and cause low blood sugar? I do hope you are able to get this taken care of. I know it has been a long haul for you and you deserve to get the right treatment so you can get better and get on with your life. Please keep us updated as to how you are doing. I look forward to hearing good news from you soon.
Tatia
tatia batz

Thursday, 6th November 2008 at 7:20 pm

Pamela,
I have been looking over the blogs and came across yours tonight. I have been diagnosed with and insulinoma, finally! I am scheduled to have surgery in December. I saw that you were to have laproscopy but had to spend 7 days in the hospital. My doctor told me if he remove the tumor laprosopically he will and I would probably only have to spend 3 days in the hospital. If you don’t mind telling me about your experience in the hospital and your recovery too. My insulinoma is in the body towards the tail of the pancreas. If I cannot have the tumor enucleated then it will be cut out with a distal pancreatectomy and spleenectomy. I have two young daughters 3 and 6 and am just wondering how long it took for you to be out of bed and feeling better. I plan to have my surgery at Barnes Jewish Hospitla in St. Louis. I also read that you were admitted to the hospital the night before, was that so you could be hooked up to an IV with dextrose. They told me to not eat 12 hrs before or drink anything for 6 hours before surgery. I can only go 2 hrs between eating. I am a little worried. Any thoughts or suggestions you might have would be very helpful. I am glad you are doing well and have begun to live a “normal” life again. I too find it hard to believe I will not have to live this way forever with just one surgery.
Kim

Thursday, 6th November 2008 at 7:35 pm

Hi Tatia,

I hope you don’t mind my intruding on your correspondence with Pamela. My tumor was also on the tail but I didn’t have laparoscopic surgery. However, two weeks after surgery I hiked up a small mountain in my town! I was feeling a little ill afterwards but it felt like progress. I didn’t have any complications after surgery and the nurses and doctors made sure I got up and walked a lot (more than I felt like!) while I was in the hospital. As undesirable as it was, I think it helped me to recover quickly. Getting to 90% was pretty steady. The last 10% stretches out and a year later I still don’t feel all there but I’m close. I was lucky to have my insulinoma diagnosed relatively quickly. It was a year roughly that I had severe symptoms. Perhaps if it had been longer I would have been in worse physical shape going into surgery, and recovery might have been slower. Who knows.

I too was worried about making it through the night before surgery because I was told not to eat. After I told them how concerned I was, they said I could have clear things all night. The kitchen at the hotel made A LOT of jell-o for me and I got up every two hours to slurp down a big glass of it. I had a Plan B which was to head to the ER if I started crashing.

I hope this is helpful. I am glad that you are getting close to resolving this. Your life will be so much better. Good luck and keep asking questions! It is a huge undertaking!

Kim
Kim

Thursday, 6th November 2008 at 7:40 pm

Hazel,

You have really been through the wringer as they say here. I was so sorry to hear your news. I am thinking of you and hoping that all goes well in NZ. Keep thinking positive thoughts. You have many thoughtful and caring people here wishing you the best.

Kim
pamela

Thursday, 6th November 2008 at 11:39 pm

Hello Tatia,
My insulinoma was removed from the head of my pancreas. The morning of my surgery is when my surgeon told me it would not be done laproscopically. Although having it done that way would have been so much easier as far as recovering….. i was just so ready to be done with my sickness and all the symptoms that i suffered daily, i tried to not stress to much over the pain and recovery, and just focused on how wonderful my life would be healed and healthy. I too, had a hard time believing that after all the years of misdiagnosis and suffering, and close calls with accidents, craziness, confussion, headahes and low energy, that it could all be healed with one surgery. Kim is right, the nurses want you to get up and move some. That was hard. For me, the pain was pretty bad when i first woke up, then in my room they gave me lots of drugs and a pump. I dont know how sensitive you are to these drugs, but i had to have extra anti-nausea medicine. If you are sensitive, i would recommend this before hand. My back had a-lot of pain. Im not sure if that was just because of the location of the tumor, or if everyone has had that. I was very pushy about staying the night in the hospital the night before surgery. Yes they did give me a dextrose i.v drip. I think its too risky to not eat the night before, especially if you need something to eat every two hours, and then your nerves will be working. I would be insistent on staying the night before if at all possible.
Its so weird for me to think back and remember how sick i was. You too will be thinking this way soon. Your christmas with you girls will be like no other! Just to be able to enjoy them and take of them being healthy is the one thing i try not to take for granted! Keep us posted in the weeks to come, Dec.1 is going to be here in no time! Hope i was able to answer some of your questions. (I like to ramble!) Take care!
Hazel,
Hope you have been able to see your specialist in NZ! Let us know how you are!

Pamela
Hazel

Sunday, 9th November 2008 at 5:15 pm

Hi there,

Thanks so much for all the supportive comments. This is really such a great group of people who have made a difficult time for me so much easier thanks to everyone’s compassion. My plans changed almost as soon as I posted as Dr Parekh rung to say he’d like me to do an endoscopic ultrasound in NZ and exploratory surgery as he was sure I still had a tumour in there somewhere. As I can’t get the EUS in NZ-there is only one doctor in the whole country who does them and I haven’t been able to get one - I stayed in the States to get the test. I had to wait another week to get it but now I have had the EUS which didn’t show a tumour. We’re finally flying home today.

My next challenge is to get this aneurism sorted out. I did ask if it could be causing my symptoms but was told it wouldn’t do that.

Hazel.
Peggy

Monday, 10th November 2008 at 6:16 pm

Hazel,

I am sooo frusturated for you… sorry, I’m sure that doesn’t help at all! But as Dr. Parekh had said, it seems their technique and their equipment should’ve shown an existing tumor. I had two EUS’s done at another hospital which didn’t show the tumor either. I remember how it feels to have your hopes up so many times and be disappointed. I’m so sorry. Having suffered over 15 years, I had eventually given up searching for a cure and decided to live as well as I could with my condition. It wasn’t until then that I found this sight and was encouraged to get back in the fight. I’m sure your time will come Hazel.
This aneurism is your main concern right now, and I am hoping that you find a good surgeon who can take care of you. Did Dr. Parekh tell you if they thought it could be done with endovascular repair instead of open surgery?
I’m guessing your time here didn’t feel like a vacation and I’m sure you’re glad to be home where you hopefully have some support. Please know that we are here for you in spirit.

Peggy
Hazel

Sunday, 16th November 2008 at 5:50 pm

Hi there,

I am getting on with things and have gotten over the jet lag following our flight home. I’ve seen my doctor and am in the process of finding out what to do with this aneurysm. I’ll need to see a vascular surgeon to find out what they plan to do and I have an appointment booked for early December. The radiologists at USC thought it would be possible to treat it via a vein rather than by open surgery. If I do need surgery, they’ll be able to have a good look at my pancreas at the same time so even that won’t be so bad. I’m grateful to have found this problem as it would be a whole lot worse if it had ruptured.

Tatia
The aneurysm itself is on a blood vessel on the SMA or superior mesenteric artery which is the main one going to your intestines. It’s not actually on the pancreas but is very close. It’s in a difficult position so if surgery is required it will be open not laparoscopic.

Peggy
Thanks for your kind words. I just may have to live with what I’ve got for now. i’m sure some kind of solution will present itself for me in future. Dr Parekh and the doctor who did my EUS are sure there is a tumour in there somewhere so maybe one day I’ll find it.

Take care everyone and thanks again for all the compassion you’ve shown.
Hazel.
Lynn

Friday, 28th November 2008 at 10:04 am

hi all. After getting the run around from a number of doctors who thought I was making this all up I finally made myself an appt at Cleveland Clinic and got a diagnosis of hyperinsulinemic hypoglycemia. The doc put me on a very low carb diet, gave my Carbos and diazoxide, and has be scheduled for a mixed meal study on the 15th. The low carb diet was very hard to adhere to, esp since the first day was Thanksgiving, but i did it and my blood sugar is more stable than it’s been in years. I’m also scheduled to see the gastric bypass docs at Cleveland clinic for a consultation. Evidently this is more and more a common phenomenon in people who have had Roux En Y gastric bypass.
tatia batz

Sunday, 7th December 2008 at 10:58 am

Hello everyone,
I just wanted to update you on my progress. My husband and I are leaving today for St Louis. My surgery is scheduled for this Tuesday the 9th. I am looking forward to being well and having this experience of my life behind me. Although I do not know you all personally I really would like to thank you for all of the information and support I have gotten from you and this blog over the past few months. If I had not found this blog I know it would have been a longer and more difficult road to success. All of the information I recieved from all of you has made this experience bearable. Any thoughts or suggestions for what I am facing over the next few days would be greatly appreciated. I will keep you posted as to my recovery. I wish you all a healthy and happy year to come. I will continue to check in with the blog and hope you all will do the same. May you all have a blessed Holiday season.
Tatia
Peggy

Sunday, 7th December 2008 at 10:47 pm

Tatia,

I’m excited for you and I’ll be thinking of you on Tuesday. I hope you’ll be able to have it done laparoscopically and you’re not worrying too much about it. My tumor was removed from the tail of my pancreas this past February. They did have to take a small part of the tail with it, but were able to leave the spleen. The recovery was not too bad, the recovery room was a night mare but I think that’s because the surgery went a lot quicker than anticipated. They had to bring me out of sedation early and I had a lot of anethesia. The pain meds worked well after they finally gave them to me. Getting out of bed the first time is pretty hard…but I was only out three weeks total and it is all so very worth it. I hope everything goes well, and if your already home reading this, please let us know asap how you’re doing.
Though we don’t all blog so much after being healed and getting a life back, I’m sure everyone keeps up on what’s going on as I do.
Having insulinoma is a life changing experience, and I’m glad another person is on the other side.
Congratulations!
Peggy
Kim

Monday, 8th December 2008 at 6:15 am

Hi Tatia,

That is great news! I’m sure you are excited and perhaps a bit nervous. It is a big step but well worth it. There is so much information by now if you read all the way down this blog but please ask any questions that you have. I know for me it relieved a lot of worry to be able to ask people who had been through it. I think the main things that stand out for me are to get up and walk as much and as soon as possible - although I guarantee you will not feel like it! Also stay ahead of your pain meds when you go off the drip line. Take them before you need them because it has a way of creeping up on you and then it is too late!

Good luck and we will be thinking of you!

Kim
Alan

Monday, 8th December 2008 at 9:10 am

Hello everyone!

I’m Alan from the United States and I thank all of you for disclosing your experiences with insulinoma.

I was just recently diagnosed last week with insulinoma, even though I have lived with the symptoms for the past five years. My heart goes out to all of you that have experienced the life-altering struggles that are associated with this disease – I know all too well the devastation and fear this condition creates.

My story is a bit different than most of yours. I am 48 male and have been an avid bodybuilder for the past 29 years. I was on an exercise schedule that included lifting weights and cardiovascular training 5 to 6 days a week for most of those years. Along with exercise, I also ate small meals every 3 hours – which is common in the bodybuilding world to maintain a low body fat level.

About 5 years ago I started developing hypoglycemic symptoms if I occasionally missed one of those frequent meals. I thought I had just trained my body to become so efficient at expecting food every few hours that now I depended on it. Unfortunately this eating schedule also masked the true cause.

The symptoms progressed and two years ago started becoming overwhelmingly regular. If I missed one meal I would go into a state of despair, blurred vision, confusion, sweating, and trembling.

For a number of years I owned a thriving seminar business where I would go into businesses and corporations and give talks on business communication and customer service. With the onset of these symptoms I had to stop scheduling seminars and talks and eventually transforming my business into phone consulting since leaving my house and experiencing an ‘episode’ is terrifying for me.

It has become so devastating that I must plan every venture out of my house. I know that I have two hours before the next feeding and I have developed an intricate planning process that includes carrying peanut butter sandwiches with me everywhere.

After thinking I had to always live this way I went to a new physician two weeks ago for a complete physical and when my lab work results came back my doctor called me immediately because my glucose level at the time of the blood draw was 20.

A CT scan was immediately completed and sure enough a small tumor was detected on tail portion of my pancreas (1.5 cm).

I have been given a blood meter (like one that is used for diabetics) and interestingly when I get up in the morning my reading is always in the mid 80’s – but then drops dramatically into the 30’s and 20’s within two hours after the initial first read. I never seem to get above the 50-level throughout my waking hours.

I read all of your entries with interest at how differently insulinoma affects each of us. I find that the only type of food that alleviates my hypoglycemic symptoms is a combination of complex-carbohydrates, protein, and fat (hence the never-ending peanut putter sandwiches!) Fruit juice and sugary foods is a fast track to a drop in glucose for me.

Fortunately I meet with a surgeon tomorrow (Tuesday, December 9, 2008) for more information.

My feelings on my newly diagnosis are mixed – I’m so thankful that it has been detected (especially after reading the traumatic experiences that many of you have gone through with exploratory surgeries) and yet very apprehensive with the inevitable surgery that awaits me – especially now that the holidays are here.

I thank all of you that have given your personal accounts of this rare condition – I can’t tell you how thankful I am to have found this board. My thoughts are with each of you during this time – I’ll keep you posted on my journey and hopefully I’ll have great news shortly.

Thinking of all of you,

Alan
John

Friday, 19th December 2008 at 6:35 am

This forum has been so interesting, comforting, entertaining and helpful over the last few months since I got symptoms and got myself investigated through the UK national health system. I am a coeliac, so I suspected these symptoms were related to that - but they are not, of course. 5-hour fast tests revealed incredibly low numbers - almost comatose. Then the 72-hour fast test - this revealed the same things. First scan was a CT scan - and my doctor called to say it was clear… but an hour later I was called by the senior endocrinologist who felt sure there was something. At that point I got sucked into the private medical world and things went very fast. Consultation followed by octreotide scan (three days of it, radio-active, huge silent machines) but that was another ‘blank’ - and then the noisy, long MRI which really worked! A further consultation - and there it was - 1.7 cm on the head of the pancreas. I meet with my surgeon next week! Meanwhile I was on diazoxide - and that was not a good experience. Puffed-up face, messed-up stomach, general glumness, episodes very erratic and profound - no fun at all.
I am a pianist and teacher in London, cancelling both concerts and teaching - can’t wait to get this thing out. Eating at all hours, waking myself up to snack, carrying food to concert dates, loss of focus, fatigue, early morning rambling nonsensical speech - who needs this crap?!

Good luck to all of you - all of us - every one of us. It’s rare and fascinating - but it’s not pleasant, is it? I am thinking of you all while approaching the last stages, hopefully!

John
John

Friday, 19th December 2008 at 6:40 am

Sorry - I sent wrong email address.

It’s john - not jon!

John
Angie

Saturday, 20th December 2008 at 2:49 am

HI John

Nice to hear from someone in London every now and then! Sounds like you have been fast tracked! I thought the NHS was good dealing with me within a year from first suspicion to op!

Diazoxide is no fun as most of us on here have found - I ended up taking diuretics to counter the water retention and really I dont think the diazoxide did much good anyway!

Sounds like you will be sorted very quickly tho so good luck!

HI everyone!

Im keeping up with all the posts and with everyones progress and wish you all well!

Have a great Christmas and eat lots of sugar - what an excuse!!!!

Best Wishes love Angie
tatia batz

Saturday, 20th December 2008 at 3:34 pm

This is a reply to everyone including John and Alan who I have just heard from. I am glad you have found this blog, it will help you tremendously as you decide what to do with your insulinoma. I have just had surgery, December 9. I am now at home recovering. I had a complication after surgery where I was bleeding internally. They were able to leave my spleen even after removing the tail of my pancreas. An artery branching off the spleen was bledding. I had to have a proecdure done to stop the bleeding and also have a blood transfusion. This delayed my leaving the hospital. I finally arrived home 8 days after surgery. I am doing fine at home and slowing recovering. I know many of you recovered much quicker, climibing mountains and such but not so in my case. Some people react better to pacreatic surgery than others as my doctors have told me. My sugars are around 105 to 110 most of the time. This is completely strange to me considering I was always below 60 and usually in the 40’s or below even after eating every 2 hours all through out the day and night. I keep waiting for my sugars to drop, it is just so hard to believe I can be “normal” after my previous circumstance just days before. I trully feel I have a new life and am anxiously waiting to start living it after I have fully recovered from surgery. Right now it is just wonderful to eat only when I want to or am taking pain medicine and to be able to eat what I like not what I have to in order to keep blood sugar levels up. I hope you all have a wonderful Holiday season and consider your situation and what you would like to have happen. John and Alan, then ask on the blog any questions you might have as you move forward in the war against the insulinoma.This sight was incredibly helpfull to me and changed my life. Look forward to hearing from all of you soon.
Tatia
Kim

Sunday, 21st December 2008 at 7:03 am

Hi Tatia,

That’s great news! So happy to hear that you are on the road to mending and the days of dealing with an insulinoma are over. It takes a long time to completely recover. Someone told me you get to 90% pretty easily but that last 10% takes longer. I think that was true with me. So take it slow. Isn’t it a liberating feeling to not be a slave to food?!

Take good care. I’m so happy to hear that you are well.

Kim
Kim

Sunday, 21st December 2008 at 7:08 am

Hi ALan & John,

Great news that you are on your way to surgery! You’re actually quite lucky that your tumors were found so quickly as you probably know from reading this site. Keep us posted on your progress!

Kim
Jane Anderson

Sunday, 21st December 2008 at 6:25 pm

Hello All,

It is good to read about someone else from England. Reading all these descriptions of symptoms I have to say I had forgotten just how frightening it all was before I knew what was the matter. I had been ‘diagnosed’ with epilesy, been given antidepressants for ‘depression’ and attended 2 courses of CBT before falling into a coma the first day of the summer holidays (I’m a teacher) which really focused people’s attention! I was asked many times if I had taken drugs or had someone given me an injection which I thought were really peculiar questions. However, the hospital was great and opened up the scanner and x ray at 3 in the morning. They sent me to a much bigger hospital where someone had the expertise to do the operation.

My life is now far better. Like you all say, it doesn’t now revolve entirely around blood tests 5 times a day, food, snacks at all hours and worst of all worrying when or how the next attack would strike. ( I’d had to stop doing part of my job before the operation.) Occasionally now I take my blood sugar level to give myself the confidence that all is still OK. The hospital still sees me twice a year because, I think, I was for them, an interesting case. So, all you newly diagnosed, you WILL get better as soon as the insulinoma is removed!

Good luck.

Jane
Jackie

Tuesday, 23rd December 2008 at 9:22 pm

Hi everyone. I too have been diagnosed with an insulinoma pretty quickly. I had been reading online to see what could be causing the low blood sugars and mine was classic symptoms. I am scheduled for surgery on Jan 22nd. You can bet I am scared. Laproscopy is not an option due to the location. Mine is between the neck and body of the pancreas so it is the large abdominal incision. I was not prepared for that and was quite a shock. I am also a nurse which lets me know too much. I just wanted to thank all of you that have posted. It has been great reading all the postings and makes me feel not so alone. Merry Christmas.
tatia batz

Thursday, 25th December 2008 at 7:34 pm

Hello everyone,
I hope everyone is enjoying the holidays! I am at home recovering and it seems to be taking forever. I am not sure how long it took all of you to recover but I would love to hear how long to expect to be up and moving, how you passed the time etc. I am two weeks and 2 days from my surgery and feel as though I am not ever going to get better. It is very hard for me to remain still even though I don’t have much energy. Just some thoughts on how you all managed and what helped, sleeping medicine, hospital bed at home etc. You were probably all much better off than me and think I am totally strange, that’s okay too! I would just love to hear from those who have recovered and what you did to get through it.
thanks,
Tatia
Angie

Friday, 26th December 2008 at 5:07 am

Tatia

Give yourself a chance!!

Everyone is different recovering and that also depends on how severe your surgery was!
I didnt come out of hospital for two weeks - I didnt drive for at least 6 weeks - one and half years on my stomach muscles are still uncomfortable. Ok so I have a 9inch scar across my abdomen but Im sure other people had must worse especially if they had a whipple procedure - You dont want to damage yourself trying to recover too quickly!

Take one day at a time and be patient - the best is the insulinoma is gone! however long it takes it will be a blessing!!

good luck and CHILL!!!

Angie
Jackie Gray

Friday, 26th December 2008 at 11:22 am

Tatia, I hope you feel better soon. I am scheduled for surgery Jan.22nd and am really nervous about it. I have read all the postings and am so happy I found this site. It has already helped me to feel like I am not alone with this. Take care.
stella

Saturday, 27th December 2008 at 9:18 am

HI how r u all?
I stumbled on this website by accident. I just had a baby 3 months old. the hell i went through when i was pregnant I kept eating and checkin gmy sugar it was terrible, I kept saying something is wrong, but my husband put me into psychiatric hospital, cuz no one believed me. Finally I had my baby abd symptoms didnt go away, I am afraid to go outside and stay home alone with my baby, I feel so bad. My husband and my parent turned away from me, because they htink that i am depressed and thats why i am chacking kmy sugar and eating… I went to a doctor and he told me thats it seems that this is what i have, insulnoma. But no one in my familly is supportive they call me fat cuz i gained 40 lbs. and keep checking my sugar and eating non stop. Can someone plkease talk to me about htis more, all i find is studies on ferrets…
popygai@yahoo.com
9179923260
SUE

Sunday, 28th December 2008 at 1:58 pm

Like all of you, I have also been diagnosed with insulinoma. It took three years to diagnose ,but it is a relief to finally know what it is. It is 1.2 cm. located in the head of the pancreas in between the pancreatic duct and bile duct. I live in New York and would like to know if anyone knows of a surgeon in New York.
Angelique Acolina

Tuesday, 30th December 2008 at 4:37 am

Dear friends,

Joyous news! Baby Katelyn arrived on the 30th November. The pain I had from the scar tissues is much better now that everything is not so stretched anymore and I sm now back on my normal dose of enzymes (creons). I wonder if Laura had her baby - we have not heard from her.

Tatia,
I am so glad youre on the mend. I passed most of my time at the beginning post op propped up with pillows and watching movie after movie. Walking short distances is also good and I can assure you, you’ll see yourself getting better and better day by day. I remember 2 weeks post surgery I couldn’t lift a kettle and by week six, I was christmas shopping (though it tired me out by the end of the day). Thinking of you and wishing you a speedy recovery. xxx Angelique xxx
John

Wednesday, 31st December 2008 at 7:50 am

An update - I go in for surgery in London this Saturday 3 January, operation on Sunday 4. Initially, they’ll try a simple laparoscopic procedure but will then decide whether the full procedure must be done - duodenum, pancreas bits and gall bladder - and I shall only know when I come round.

I am hoping for the first way to succeed, of course, and am practising PMA - positive mental attitude - all the time. But I have cancelled all my concert engagements in January and put those in Feb and March on hold. I am told there’ll need to be a drain in temporarily - and temporary diabetes until the pancreas wakes up and restarts its correct insulin production.

I am also only too aware that it could be months till I am able to restart teaching and concerts. But I refuse to consider that yet.

One step at a time!

I appreciate others’ comments and reports - this site is very helpful to all of us.

And I wish all a very healthy and happy new year, insulinomas eradicated, strength back.

John
Angie

Wednesday, 31st December 2008 at 8:12 am

John

Which hospital are you going in to?

Its a good sign that they will consider laparoscopy first they must think it should be easy to get to!! My surgeon told me he wasnt even considering that route !! Even so i do think they tell you the worst case scenario so that when they succeed in the easier procedure you are even happier and think they are wonderful!

If you are private things will be different but i had my drain in for just under a week I think - may have been 5 days! By that time you are quite attached to it (ha ha) and have got used to carrying it around!!

My pancreas was fine almost straight away and my sugars were up immediately!

Watch out for the come down if you have a morphine pump. You may feel really depressed that day and you dont put two and two together till after, then realise its the morphine withdrawal!

Good luck and take it as it comes, with laparoscopy you could be up and around in a week!

Keep us informed - anything else you want to know im here now for a few hours!1

Angie
Ps I was in the Royal London under Mr Battacharya.
Janet

Wednesday, 31st December 2008 at 9:18 am

Hi to all and I wish everyone on here a happy 2009 and hope we all are blessed with better health! I hope those tht have had surgery recently contine to make good progress and to John I will be thinking and praying for you this weekend. I am still taking loads of diazoxide and water pills but am ok at the moment. After surgery there is no denying yo will feel grotty, but every day is so much better than the one before. I too play and teach piano, well just a couple of very yong pupils, near a small town in Birmingham, England.

Love to all and a healthier new year!

Janet xx
Jamie

Wednesday, 31st December 2008 at 1:30 pm

Hello everyone

My name is Jamie. My sister was recently diagnosed with Insulinoma. I am trying to locate a surgeon in the Tampa FL area that is willing to perform a laporoscopic procedure on her. I am looking for the least invasive procedure, initially, and am hoping to avoid the “exploratory” type of procedure. Any recommendations?

This disease has controlled her life for the last 4 months and has caused drastic behavioral problems and mood swings. She has lost her job and home among other things. She has also had run-ins with the law, which made me think she was BI Polar. I even had her Baker Acted into a mental institute…because I didn’t know what else to do. She has racked up over 30K in Hospital bills and noone knew what was wrong with her.

She passed out in a parked car and was accused of drinking/drugs before the Ambulance discovered her blood sugar level at 40. Upon further review, they say she has Insulinoma…but a part of me still think she has other issues as well.

Has anyone with Insulinoma had Bi Polar type symptoms??

Any feedback would be apreciated.
Jane

Thursday, 1st January 2009 at 8:14 am

Hello John,

I, too, am a teacher and had my operation to remove my insulinoma in 2007 in Birmingham, England. As it is major surgery you can expect the recovery to take quite a time. I was off work for about 4 months but was able to do gradually do lots of things before I returned to the fray.

After the removal of the insulinoma I was immediately better: no temporary diabetes, sugar levels fine. It was amazing and everyone, even now, says the difference in me is remarkable as I really was very unwell before. I displayed lots of very peculiar and frightening behaviours at home and at work!!!

I’m sure you’ll agree that any discomfort you may experience will be worth it because your life will change for the better.

Happy 2009!
Nicky

Friday, 2nd January 2009 at 4:55 am

Hello to everyone and to all a Happy New Year!

It seems so long since I last logged on.I must say that I now feel really great. My surgery was August 5th and since then I have lost a total of 14kg (almost 31pounds) and I wasn’t even trying. Apparently high levels of insulin in your body aid in converting suger into fat more readily which is why we all put on weight so fast. So as my body returned to normal so too did the fat fall away (well nearly all I still need to lose another 6kg to be at my pre-insulinoma weght.
My anaemia has corrected itself and my digestion has improved heaps, only if I overindulge in fatty stuff like I did at a bbq yesterday do I have to run to the toilet.
Over christmas I even managed to join in a baseball game at the rellies and not have to run for food or a drink instead of a base “wow”.
To all those recovering from surgery the light at the end of the tunnel is so much brighter than you ever imagined. I also have a 3 and 6 year old daughters and can finally pick up the little won or play with the elder without saying mum’s to tired.

Tatia so good to hear its over for you, surgery is different for everyone. I had 2, one to remove the tail of my pancreas (which they thought the tumour was in and wasn’t) and that suregery left me with a complication of fluid building up because my drain was removed too soon, it was perfomed laproscopically. I recovered fairly quickly from that maybe a month of soreness.Mind you my hypos were back before I even left hospital. The second more recent one, only 17months after the first was a bit more tricky but nonetheless a success, and success tastes sweeter than anything.
Keep the faith and remember we are all so strong,its amazing what our bodies have put us through and yet we gain strength from eachother without ever seeing eachothers faces. xx

Hazel sorry to read of your continuing struggle, even though NZ isn’t that far from OZ I wish I could be closer to give you personal support. It seems there are so few of us here but I suppose with a population of 20 something million people and the odds of 4 in a million chances are you probably aren’t verey close to someone else who has the condition. I guess I was lucky getting such a wonderful surgeon who deals with all aspects of cancerous pancreas’ and left me well intact. I hope 2009 is your year for all your recoveries. xx

Hi Alan ! Wow a body builder this thing really dosen’t descriminate. Its all very unnerving the hypos and confused moments.I must say I was hoping my scatter brain moments would all be behind me but alas I still am a little fuzzy, but I can live with that It adds to my character ha ha! My insulin levels have been stable since the moment the tumour was removed (from the back of the head near the duct). I have 85% of my pancreas remaing and an intestinal graft over where the tumour was removed because it left a bit of a hole and the were concerned about leakage of digestive enzymes, but I feel great. You get the occasional twinge but I put it down to scar tissue inside and out, after all my incision required 47 stapples.
Good luck to you I hope life returns to normal for you really soon xx.

To Janet, Laura, Peggy, Ange and everyone else a big hug to you all from across the miles and good luck and best wishes for 2009 stay well xxoo
Laura

Saturday, 3rd January 2009 at 3:21 pm

Hello everyone! Sorry so long since my last post. I had a beautiful baby girl on oct 28th and now with 4 kids under 6 I am a bit busy… It is so great to hear how many of you are doing so well post surgery!

Jamie- having hypoglycemia is like being bi-polar. You lose the ability to think and to make rational decisions. Before my tumor was removed, I would not allow myself to be alone with my own children, it really is that bad! If I was you, I would hope the tumor is the whole problem, which it probably is! As for the surgery, you won’t know what type of surgery she will have till it is over. They can guess b4 they start, but any surgeon that guarantees laproscopic probably does not have enough experience. You need to find a surgeon whose specialty is pancreatic. Good luck!

Sue, if you are that close to MD, why not go to Johns Hopkins? They are the best, Dr Cameron there has more experience with whipples than anyone in the country.
Janet

Sunday, 4th January 2009 at 10:26 am

Congratualtions Laura, its such wonderful news for you and your family.

Love Janet xx
Heidi Shearman

Sunday, 4th January 2009 at 12:56 pm

Hi everybody, my name is Heidi

My husband, Michael, (age 49) is suffering with an insulinoma and we are progressing slowly though our medical system to get ready for his operation. We live in a smaller city in northern BC, Canada, and we have only limited access to the level of expertise needed, so we have been flying back and forth to Vancouver (800 km south) to get to the appropriately knowledgeable specialists. He has had 2 CT scans, as well as an MRI, and several rounds of blood tests, and they tell us they know he has a tumor, but haven’t actually seen it yet. At this point we don’t know a surgery date, but they have now found the ‘hot’ zone in the head of the pancreas during a calcium stimulation test run in November 08. He is scheduled to see the surgeon in Vancouver on Feb 3rd 09 and will then be given a spot on the surgical wait list. Interestingly, our medical system considers insulinoma to be an elective procedure, as the condition is ‘manageable’, or so they say. However, they do agree that it is imperative it gets removed with some urgency. The surgeon is supposed to be very knowledgeable, but is like talking to a grizzly bear. Should be a charming guy then!

We have had an interesting journey with this illness, although maybe not as dramatic as some of you, culminating in my calling the ambulance on April 17, 2008 because I thought he was having a stroke! He was so lethargic and talking gibberish, when he spoke at all. The paramedics recognized it as a sugar problem right away, but assumed he was diabetic and kept asking me about his medicines (he takes nothing). The first blood test was 1.7 but after IV Glucose and a two-day stay in emergency, he was sent home with a glucometer and instructions to not let his blood sugar get below 4 by eating 6 times a day. They did all kinds of tests while he was in hospital including a fasting test (he got down to 0.7 in 13 hours). The one thing everyone said was that they were shocked he hadn’t gone into a coma. Luckily we had a local internal medicine specialist with 35 years experience who told us it was a one in a million occurrence and he had only seen a few cases in his lifetime living in the north of our province, but that Mike should come through ok once the tumor is removed. Dr. figures he has had the tumor for at least couple of years, and he had gotten used to having low blood sugar and feeling down. He has been putting on so much weight the last 18 months, I had asked him to go on a diet with me since we could both afford to lose a few pounds. Who knew this was a symptom of a serious illness! That is apparently what set him off – reducing his intake by 300 fewer calories a day tipped the scales and he finally manifested the crisis. Now we understand why he was so tired and grumpy for this last school year.

We had a major trip to Europe planned for July and August 08, to pick up our 15 yr-old son who had been in Germany on a school exchange, and travel around to celebrate our 20th wedding anniversary. Drs all recommended strongly that Mike not go on this trip as he would be likely to get unstable and he couldn’t get travel medical insurance, with a pre-existing condition. Well, this trip has been planned for the last 5 years, and he eventually decided to go anyway. Since we have the tools to manage his situation food, juice, glucometer, glucose tablets and glucagon injector, we did decide to go. While we didn’t get to everything we had planned, due to Mike’s needing more rest every day, the trip went quite well and we have wonderful memories of our time traveling as a family to such interesting places. It did, however, delay the next step for testing and we are paying the price now with longer wait times for everything.

He is an elementary school teacher and is on his feet for hours every day. At this point, Mike works 4 days a week, but his sick days are getting more frequent as he gets exhausted so quickly. Luckily he is he has an understanding boss and co-workers. (these folks keep an eagle eye on him at school and make sure he is doing ok, for which I am very grateful).

It has been very interesting reading other peoples’ comments on how their surgery went and the recovery times etc. Once Mike has surgery in Vancouver and is released from hospital, he will be flying home (driving takes 10-12 hours in winter conditions) and we will see how things evolve. I can only describe this situation as living with a ghost. Mike is so tired by the end of workday that he is very quiet – sits watching TV or reading. A short dog walk around the block is too much sometimes. He just isn’t participating in our family life much any more. We don’t blame him, as we know how things are, but we will sure be glad to have the real Michael/Dad back. We have lots of snow in the winter and I have done most of the shoveling so far – he just can’t right now. Oh, well, I need the exercise too.

So, I will keep checking in on this blog to see how everyone is doing and we will post our updates as they happen. It is helpful to know that others are getting through this challenge. We know he won’t be having laparoscopic surgery, but we would prefer not to have the dreaded Whipple if it can be avoided.

Thanks for being out there and letting us know how things go – it helps you to not feel so alone with this ‘interesting’ problem!

Heidi
John

Sunday, 4th January 2009 at 2:58 pm

Hello everyone! I’m Fiona, John’s wife and I have just come home from the hospital after John’s surgery. He did it! I’m so relieved! His surgeon started with keyhole and they could see the insulinoma on the head of the pancreas but he couldn’t get proper access so he opened up and eneucleated (Sp?) it without the dreaded Whipple procedure!
He’s in Intensive Care for one night and he even cracked a few jokes with me and our 2 wonderful children, Alex and Maddie who, even at 25 and 23 found today a real rite of passage and they said to me that they needed to be involved in the whole process.
It wasn’t the best day - in fact it was hellish - but it’s done and he’s ok!
Thank you all for all your experiences and comments on this forum. It prepared us really properly for what might come so there were no frightening surprises.
All our thoughts are heartfelt for anyone with upcoming surgery and John or I will keep you updated with his progress.
Janet

Sunday, 4th January 2009 at 3:42 pm

Hi Fiona. So glad that John’s surgery was sucessful and that he is doing well. Thoughts and prayers are with you an also everyone else on here who is facing the probelms that this horrible condition brings. Love to all.
Janet xx
Jane

Sunday, 4th January 2009 at 3:57 pm

Hi John and Fiona,

Funnily enough I was thinking about John’s surgery because Sunday seemed an unusual day to operate. It is very good news that it has gone so well. Recovery does take a while but in a few days or so he will be able to start to read all those books he has been meaning to but hasn’t yet had the time! Let us know how he is doing.

Jane
Jackie

Sunday, 4th January 2009 at 4:14 pm

Hi everyone. This website has meant so much to me reading all the comments. I have been just diagnosed with an insulinoma and am scheduled Jan 22 for surgery. Your posting have been such a comfort as I have am adjusting to the news and the thoughts of surgery. Like John I will have to have the big incision since mine is near the pancreas head. I have dealt with this for a year and the episodes with hypoglycemia were really scary. Can’t wait to be done with this and hopefully get some weight off. I have gained at least 40 pounds trying to eat enough to keep my sugar up. I live in the Dallas, TX area and there are two surgeons that have experience with this surgery. Thanks so much for sharing your experiences and hope all of you that are recovering feel better soon.
pamela

Monday, 5th January 2009 at 9:31 am

Hi Jackie
Your not alone here in Dallas…. … I had my surgery here this past june. My surgeon was over at UT Southwestern med. center. I highly recommend him. My tumor was in the head of my pancreas. We were going to try and do the surgery lapriscopically, but decided to open me up. I too gained about 40 pounds with this horrible illness, and have gladly lost them all and then some! Where and who is your surgeon? Mine was Fiemu Nwariaku. Very wise, and has experience with insulinomas! You probably have forgotten what it feels like to live normally, but the 22nd is around the corner, and with a few weeks of healing you will be back to your old self! Where are you in the Dallas area? Please let me know if there is anything i can do since i am right here!
John and Fiona
I am so glad to hear the surgery went well! A few weeks of recovering will soon be behind you as well and a new life will begin for you and your family! Prayers to you all, and to the happiest new year!
Angelique, and Laura
CONGRATULATIONS on your new babies! I have enjoyed being a mother to my girls so much now that i am healthy!! I wish the best for you and your families!
Nicky,
i am so glad to hear you are feeling so well now and you can also enjoy your girls!!!
Janet,
hope you had a nice holiday…still always thinking of you, and hoping you are doing well and able to keep up with the medicines and sugars okay.
To all…. prayers are with you for a happier healthier New Year.
Pamela
tatia batz

Monday, 5th January 2009 at 9:55 am

Hello everyone,
I just wanted to update you all on my progress. It is not so quick! I had surgery on Dec 9th with a internal bleed complication. I finally came home from the hospital feeling fine. I was eating well and anything I wanted. I soon got sick agian with fever and not able to eat anything. I was sent back to St Louis by ambulance for an infection or puss pocket from the original complication. After being in the hospital for a week I returned home on New Year’s day. I am feeling better except for not being able to eat due to nausea. I am also very depressed. I was just wondering if anyone else had these side effects and what they did to help. I am not sure why I can’t eat now but could before. They installed a drain when I was in the hospital last that I will need to wear for 2 to 6 wks to drain the infection. I love hearing from everyone, the new babies and John about your surgery yesterday. I wish you a speedy and easy recovery. If anyone has any thoughts or suggestions if they experienced any of this please let me know. I wish you all great success and health in the new year.
Tatia
pamela

Monday, 5th January 2009 at 11:18 am

Tatia,
sorry to hear of the complications you have faced…. hopefully this time around you will recover properly. I am not sure why you are not able to eat, but i know i did not do well with all the pain medicines and antibiotics…. they do tend to upset my stomache and bring my moods way down. Since its only been a few days since you have been home this time around, maybe you just need a some extra days due to those complications and then you will begin to feel better.
sorry i am not to helpful, but i do hope you begin to feel well real soon!!! Please let us know.
Best Wishes
Pamela
Jackie

Monday, 5th January 2009 at 11:28 am

Pamela, I live in Grapevine and my surgery is planned at Denton Regional Hospital. The surgeon is Carolyn Garner and she came highly recommended. I was also given your surgeon’s name but was not sure I wanted to go to the medical center and be part of a teaching hospital for this one. I am a nurse and not sure that is good or bad. Sometimes it is not good to know so much. She says she has done 20-30 of these and I really liked her. She recommended I get a second opinion and offered as well your surgeon. I think the two of them are what we have in this area. I would love to hear more about your experience.
John

Monday, 5th January 2009 at 5:31 pm

Hi again everyone - Fiona here.

We got only a little more info today about what actually happened in John’s surgery. It’s really very different here in the UK I’m thinking - the surgeons here are a bit like an elusive god characters who we get to see if we’re lucky! And you either have treatment on the national Health Service, which we all pay taxes towards (sorry if you already all know this!) or you add to that if you can afford it by paying into a private health scheme. John started off in the NHS and his first consultant came up with the Insulinoma idea. His CT scan and fasting tests were all done on the NHS but because things go unbearably slow here - as in he wouldn’t have even had the a meeting about the CT til Jan 15th (!) let alone an MRI or Octreotide scan, we decided to call on a very inexpensive, subsidised health scheme he’d paid into at the school we both work at.

Things went amazingly fast after that - it’s really shocking how you jump all the queues if you’re private in the UK but after the years of blood sugar weirdies we didn’t care - sorry but it’s true….And it also explains why he had his surgery on a Sunday, Jane! The NHS doesn’t do surgery at weekends unless it’s emergency so it’s a chance for the surgeons to have loads of time to take over their operations - and to make a load of money too! I have to say at this point that they are the SAME surgeons who work in the NHS so it’s not quality of care that’s compromised if you stick with the NHS but speed of treatment. Thoroughly immoral don’t you reckon?

But there’s another difference too between what I’ve been reading here in the forum and us in the Uk - we dont really have any choice of surgeon - even privately - John’s consultant simply said ‘this is who I recommend’ and it would have been extremely difficult and awkward to say we wanted to do some research first - so we didn’t! And so far we have no complaint!

But back to the surgery…

He started with a full load of anaesthetic but not an epidural - not quite sure why, but the anaesthetist seemed keen to avoid it if possible for at least the keyhole attempt. But even after the insulinoma was located and open surgery was chosen, he still didn’t administer an epidural. This means John has a lot of pain around the wound site but he’s on the morphine pump and paracetamol and so far, it’s just about enough. His lung was collapsed and he’s now having to cough and breathe deeply to help clear things but he was sitting up in a chair when we arrived in the High Dependency unit this morning (the doc there told us he didn’t really need to be there at all but that’s what surgeons of private patients insist on!) and much less sleepy - until he clicked his pump not realising just how quickly it works! Ok - end of visit then!
But each time we visit he’s more and more strong. He could have got rid of the catheter today but he’s chosen not to til tomorrow ,and he’s still not allowed to eat but he has had several very British cups of tea! He got quite emotional as we were leaving and I reckon the shock of what he’s been through is only just sinking in - that’s quite typical of his personality but I can’t help adding here that it’s also a bit typical of men! Argue if you like, guys - I can take it!

So that’s how it’s going at the moment - oh, except to say his blood sugar levels are STABLE! I can’t believe it! And I even went out and bought him some low-sugar jellies to tempt his appetite when he’s allowed to start eating. Low sugar jellies..hehe - it seems almost cruel!

Best wishes to all and thanks to everyone who sent messages.
Fiona
pamela

Monday, 5th January 2009 at 11:21 pm

Jackie,
Well i used to live in Las Colinas, now i am in Preston Hollow area in Dallas. My mother-in-law lives in colleyville so i frequent that area. We live very close to one another! i did hear of Carolyn Garner. I believed to hear she too was very experienced and recommended! You do have quite an advantage in being a nurse!! Mostly good, some bad i suppose. My mother was an R.N for 30 years, so i guess i have some understanding in the more personal, not medical view.
If your up for the 2nd opinion, i think my doc would be great to talk to. I have all the numbers and know his nurse pretty well(oddly enough i went to high school with her daughter back in albuquerque. i would love to talk and do anything for you to help! i delt with this awful condition for 6 years…….. its so debilitating. i can give doc numbers or whatever. give me a call if you like 214-557-0333 or if your more comfortable blogging , i will be happy to answer any questions to my knowledge.
Pamela
Janet

Tuesday, 6th January 2009 at 7:55 am

Hi Everyone,
John and Fiona
Glad that John is doing well, I can understand the emotional bit as that is exactly how you feel. Many of us on here know exactly what he has been through and thrilled for him that the worst bit is now over. I was lucky to have my op on the NHS. I have to say that once they had found out what was wrong with me things moved very quickly with the first insulinoma. Although it took 12 months to find the problem , but because eventually I went into a hypo coma on a public service bus I had the op within a week of that incident. I hope and pray that all will be well and that John will soon be home. Love to all others on here who are facing surgery or are having tests or taking the dreaded diazoxide like myself!

Janet xx
jo

Wednesday, 7th January 2009 at 7:57 am

I have been reading, with much interest, all the comments made on this site. I am currently being investigated for an insulinoma, after experiencing quite a few episodes of hypoglycaemia. They have dropped as low as 1.5, for no obvious reason and often don’t get above 5 all day. However, some days it is fine and my levels are “normal” (as described by the specialist, he states 3.5 to 5.5 are the acceptable levels, 60 to 90 in other countries!!)
I also have spells where I just don’t feel particularly well, a bit out of it and run-down. When I check my levels, they are sometimes low and other times reasonably ok. Often, the levels drop throughout the day, sometimes after food, sometimes not. There seems to be no pattern. I am due to have a CT scan soon, and then wait for all the results of bloods, scan etc. One thing that concerns me is that if I have days where my levels seem ok/normal, and others when they certainly are not, if I have had blood tests taken at hospital on a “good day”, will this distort any results? I hope that makes sense!
Wishing everyone the best of health and happiness.
John

Thursday, 8th January 2009 at 10:28 am

Hello!
Having got almost through this process with John, at least the surgery and hospital bit of it, I feel I can now look a bit more outwardly and I want to send anybody who is facing surgery - and their families, a message that although it’s horribly tense and worrying before it, and after it ,for a few days, recovery can be amazingly fast! I know it’s not the same for everybody, as is clear from this forum, but because John has had a very lucky ride indeed so far, I think there’s no harm in saying it!

In the week before the op we were lucky enough to be able to speak to a colleague whose friend had gone through the Whipple and come out the other side a changed person and, although she scared us a bit more than felt comfortable, it was good to hear what he might go through. The surgeon did the same of course - they do give you the worst case scenario! Actually, I’m still cross that the surgeon didn’t tell us about the ‘open eneucleation’ possibility which is virtually what John had in the end. He had to take a very small bit of the head of the pancreas because of the position of the Insulinoma but only a tiny bit, which means that John won’t be diabetic. Woohoo! Strangely, John isn’t cross! Possibly because he’s just relieved it’s over. But in the week before the op, we really thought it could ONLY be done by keyhole or it would definitely be the whole Whipple - no middle way. That was very scary indeed and after waiting past the ‘keyhole’ max 3 -4 hour operation time’ on Sunday and still no news, my kids and I assumed he’d had to have the whole shebang out. Not funny.

So - apart from a bad stomach last night (day 3) with a bit of nausea and a bit of back pain from lying flat in his back for too long, his recovery is going just great, mentally and physically.

Only two things left now - the drain out and the analysis of the Insulinoma itself. But we’re assured that most Insulinomas are benign and I believe them!! Have to.

I hope this is of some reassurance to anyone about to go through surgery, or anyone who is still in the investigation bit. We intend to re-start 2009 when he gets out on Monday (only 8 days in hospital!) and I send all good wishes and thanks for this forum - it’s been brilliant.

Fiona x
Angie

Thursday, 8th January 2009 at 11:20 am

Dear Fiona

I have been keeping an eye on the posts you have been writing about John. Glad hes coming along nicely!! I was in Barts and the Royal London for my op nearly two years ago! You seem close as you are in London too if you know what I mean!

Although I knew I was having a full open surgery i was also expecting a whipple but hoping against hope I wouldnt have to! I was lucky and my surgeon manged to remove just the tumor. Mine was in the head near a vessel so he didnt think it was likely they could do it but as I believe they give you the worst case scenario rather than get your hopes up and it be worse than expected! Sorry Im repeating myself from an earlier post!

I was so relieved I had escaped a whipple not much worried me to start with.

I had a few freaky things happen, my epidural failed during my first nite in HDU which left me with no pain relief and I later I suffered a panic attack that knocked out all my electrolites and co2 ( still not really sure what happened but it was very scary).

Anyway what is surprising is how much you improve every day - you actually feel the improvement as your body recovers - its quite mad!

I suffered from bad stomachs for a while and was concerned I would have to take supplements but it did settle down. I found out at my 6 week out patients that they had removed my gall bladder which explained it - yes it would have been nice to know at the time!!

I suffered from bad indigestion for some time but after a few mega ant-acid tablets from my doctor Ive never had it again.

I have learnt that you must know as much as possible when dealing with the NHS - several times it was my knowledge of my condition that stopped them in their tracks. The house doctor was going to put me on an insulin drip overnight before my op! She hadnt read my notes and believe me I told her in no uncertain terms she was not going to!!

If John thinks there is anything to be worried about dont hesitate to make it known, sorry! you probably will anyway, I just feel strongly that we are not told enough sometimes as they take it for granted that we should know it anyway.

Good luck and tell him to take it slow!!!

Best Wishes

Angie
John

Thursday, 8th January 2009 at 11:45 am

Hello Angie,

John is in King’s College Denmark Hill so it isn’t a million miles away from where you had your op done!
I can’t believe they didn’t tell you about your gall bladder - it’s that kind of thing that makes all this so much more frightening that it need be! Ok so you’re alright now, but it’s so unsettling isn’t it? John’s problem has been that the catering staff have no training in Coeliac disease - none. So we’ve had to tell them in no uncertain terms that for him to eat even a tiny bit of gluten is positively dangerous. And we both think that a hotel style food menu is totally inappropriate for post op patients too - lamb chops, Greek salad, Spag Bol are on the menu! We did tackle the Sister about it and she said the old days of ‘invalid’ food are long gone and people won’t eat it so the policy is to allow patients to choose whatever they like. Daft. He had a bad tum last night and tonight he’s suddenly got internal pain - It’s so odd how things change so quickly - I was only with him 4 hours ago and he was fine. I think he gets nervous about the night staff tho - and the whole night thing in general. All his favourite nurses go off duty and I think he gets anxious about all those hours ahead of him. It happened yesterday and developed into tum trouble but today he’s got there before they change over at 8.30 so I hope he’ll be sorted out with proper pain relief before they go off.

This is terrible! My last post was intended to give people encouragement but now I’ve blown that! But not really - I still stand by what i said earlier, it’s just that everybody has to learn to be very flexible and not get too fixed about things. I’m sure John will be ok tonight - it’s just the next thing in his recovery and tomorrow he’ll say ‘Oh that - yes - the pain went off by about midnight’ . In the meantime I’ll no doubt wake up with instant fretting at about the same time….ah well. I love him really!

Best wishes,
Fiona
Angie

Thursday, 8th January 2009 at 11:58 am

Fiona

It is the stress that gets to you !! I thought I was going to die one night of a neurological disease because my body kept jumping every time I tried to sleep - It was stress and nerves about going home now I look back on it! The abdomen pains were brought on by a bit of acid - probably more than normal but then my anxiety!!

We do things to out bodies without realising it! I must have looked like a real neurotic at times. However i told them I had a water infection and it took them 3 days to believe me - by that time I had a temperature of 39.7 and I really felt ill! They eventually gave me some antibiotics!

I feel that if you read some of the problems others have been through it helps prepare you for what could happen and that it is ‘normal’ to have the odd complication without going in to mass panic.

I was told to make sure I had an epidural administered during the op and to make sure they had a morphine pump set up ready, but I didnt and of course i needed it.

Its easy afterwards!

Has he been given a rolled up towel to push onto his stomach area? It sounds funny but if you laugh or cough it can really help to support the operation site! Also when in the car it is useful to put under the seat belt.

Just a few little gems people helped me with!

Keep in touch

Love Angie
Angie

Thursday, 8th January 2009 at 12:15 pm

Fiona

I meant to say - the food in the London was awful! I lived on the yoghurts and fruit, the toast in the morning and bits and pieces of the meals, the odd dessert was ok! Spaghetti bolognaise was only a dream!!! And vegetables - they dont have them do they????

We - I made a few friends on the ward - used to get there first as we were the most mobile, trailing our drains, to make sure we got a choice. Looking back its hilarious!

My friend had to go home in the end as they couldnt supply the meals she needed to get better! My friends who used to visit looked on in horror most times if she arrived at meal times!

Although I cant fault them generally as I was diagnosed and dealt with very quickly! I had never had much hospital experience until then and it really opened my eyes to the problems of the NHS.

So much of it had its funny side I could go on for ages - but I wont!!
Bye for now.

Angie
Jane

Thursday, 8th January 2009 at 2:01 pm

Hello John and Fiona,

It is good to hear that John is doing well and of course better already from not having the insulin-making tumour causing him to be ill at unpredictable times.

I had many similar experiences to those who went NHS: in hospital, before, during and after my stay. I think I put it all down to people’s inexperience of the condition. However, I have to say that it was unnerving to think that had I not spoken up on several occasions that I would not have got the correct care. People are familair with diabetes but obviously not insulinoma.

Where I had my operation it was the standard procedure to be on the high dependency unit, the medium and then obviously the low before discharge so I don’t think John was incorreclty on the HDU, after all he had just had major surgery. I think a lot of the staff in the NHS are agency or temporary and it never seemed to be the same team and some of them were quite unsympathetic. I think they get immune to illness and people suffering pain.

I was seen fairly quickly once diagnosis had finally been confirmed and I was sent to a large teaching hospital where they had experience of doing the op. The surgeon gave me a date there and then from his little pocket diary and rang me in the evening to talk to me about why removing the insulinoma was difficult but essential. They did tell me the worst scenario, the Whipple, which is what I was down for but although I had lots of pancreas removed as they also found a small cyst as well, the Whipple had not been necessary. I was only able to eat jelly and drink hot chocolate for about 3 weeks!

John now needs lots of rest and recuperation in the warm. And as you say most insulinomas are benign. Keep us posted.

Jane
John

Friday, 9th January 2009 at 8:41 am

Hi again,
Well I’m back from the morning visit and that internal pain did stay with John last night but the ‘dreaded night staff man’ he’s talked about was completely wonderful apparently! After a morphine injection in his bum and a clear up of drain fluid - (it seems there are ‘oozers’ and non-oozers’ with drains and both are fine) - he slept like a baby for nearly 4 hours.
His blood sugar is now regularly around 6.9 (English numbers) which is fantastic and the only thing with his general health is too high blood pressure which the consultant worried about way before the op, and sure enough it hasn’t come down enough since the op so he’s on pills for that. But he is nearly 60 so it’s not that surprising even without the Insulinoma.
We went walk about this morning and, on a whim, decided to visit the High Dependancy unit to say thanks and hi to them. One doctor recognised him immediately but the main nurse who’d looked after him all night on Sunday screwed her face up, obviously trying to remember him! Very funny really! But they were pleased and surprised he bothered to visit them.
So now I’m gonna have a nap - it’s all hugely exhausting for the rels, this business, but I hope he’ll be the same cheerful self he was this morning when I go back at 7pm.
But I won’t expect it! Better not to, then you’re not worried!
Best wishes to Angie, Jane and everyone.
Fiona
Jackie

Friday, 9th January 2009 at 1:37 pm

Fiona, thanks so much for keeping us informed about John. I know it will be great to get home and be on the road to complete recovery. I am hanging on every word since my surgery is in two weeks. Pamela, thanks so much for your phone number and I will be calling soon just to say hi and to talk about stuff. It meant alot that you are willing to share your number. Jane, I am glad you are doing better too. It is so interesting to hear about the treatment practices in England. I am scheduled for the big incision because of the location and they are going to look at my gall bladder to see if it needs to come out too. Hope you all have a restful weekend.
Stacy Green

Friday, 9th January 2009 at 2:08 pm

Hello Everyone-My name is Stacy and I am 33 years old.

I just spent some time reading several stories. I felt emotional as I read because I was listening to people that I can relate to. I have what my doctor calls Reactive Hypoglycemia. I have spent the last few days in the ER due to low blood sugars and I had a seizure for the first time in my life Wed. Jan 7, 09′ due to low blood sugar. My doctor thought I might have an Insulinoma but now says I don’t have one. I have had the 72 hr fasting blood test twice. The first time was not successful because I got very sick the first night because the drop in my blood sugar caused me to get nauseous.

The second 72 hr blood sugar test was performed in Nov. 2008. My sugar dropped to 48 in less than 24 hrs, but the lab did not draw the blood in time. By the time the nurses came to recheck I was back up to 60. My sugars go up and down all day. In few hours my sugar was back down to 37 and when they tried to draw my blood I was so dehydrated that my veins began to roll and they couldn’t get the blood quick enough. The lab was contacted and it was determined that my blood sugar was 48 and it was low enough. Again my doctor said the blood test does not show insulinoma. I had an endoscopic ultrasound at UCLA medical center and the doctor saw a growth at the head of my pancreas. I am confused and so tired of the constant low blood sugars and being down in the dumps.

Does anyone know if there could be an insulinoma but blood work does not show it? I really need help. I am a Christian and my faith in God has kept me strong. I have a husband of eight years and a three year old and it is do difficult to be the best me I can be. I appreciate this website and i am glad I found it today.
John

Friday, 9th January 2009 at 3:26 pm

Hi Jackie,

You’re going to feel so great once your Insulinoma is out! My kids and I visited John this evening and they hadn’t seen him for 2 days and they were thrilled at the difference in him. For a start he got straight up out of his chair and greeted them with a big kiss. Then he proudly showed them his scar and went for a walk with Maddie! He told me that after I left at lunchtime today he had a bout of the glums and slept most of the afternoon but when he awoke he felt good again! He’s still not eating a lot but it doesn’t matter now! Gone are the dreaded cereal bars or am sandwiches which he forced down because he was scared of having a hypo. And his blood sugar remains the same even tho he’s only had a few mouthfuls of whatever. That’s really liberating for him!
Just as we were leaving his surgeon turned up and there was instant ‘respect’ Haha! My daughter had never met him and she was fascinated by his calmness. We asked about when the stitches would be taken out (or running thread actually - there’s one vertical stitch down the middle and one long stitch from end to end with a little plastic ‘bead’ on each end which means it all comes out in one go) and he said about 10 days. The drain is still attached and he said it’s possible that John would leave with it still in. But I obviously showed a bit of dismay and said I wouldn’t sleep easy in the same bed if he still had it in.
Can anyone tell me what they did with sleeping arrangements after the op? Is it safe to share a bed or should I sleep in another room/bed?
I was suddenly aware today when you said you were hanging on every word that I might have said something that upset you - I really hope not! And I know that you’ll be the next one in this forum to pass on your experiences. Everyone os different tho!

I’m really looking forward to when John comes on here himself - won’t be long! Then I’ll shut up…..hehe.
Fiona xxxxxxxxxx
SUE

Friday, 9th January 2009 at 4:56 pm

Jackie,
I am scheduled for surgery on Jan. 28. I Hope that your surgery goes well. I am also very nervous, but will be happy to not have to worry about hypo attacks any more. My insulinoma is on the head of the pancreas. Has your surgeon told you what kind of surgery he will be doing? Mine told me that there is a small chance of having it enucleated and a greater chance that I would need a pancreas resection. Did you have an endoscopy ultrasound?
For those of you who had the surgery, approximately how long was the recovery? I would like to thank all of you for sharing your experiences. IT is really very helpful. Before reading your blogs i knew very little and it helped me to know what questions to ask. Best wishes to those who are going for surgery and a speedy recovery to those who have had it.
Sue
Nicolai

Saturday, 10th January 2009 at 6:39 am

Hi all,

Thank you for sharing your experiences. I am a 31 year old male in Denmark, and I just yesterday got confirmed that I have an insulinoma. It was found using an endoscopic ultrasound, which I understand is generally the best way to find insulinomas. They found it within a couple of minutes, despite it being only about 1cm (0.4 in) long. I have also taken a CT scan (do not have results yet) and will be taking another type of scan in a week (“Octreo”-something).

My syndromes haven’t been as severe as what many of you describe, but I have had problems with hypoglycaemia for about 6 years. As long as I eat many small meals, I usually get through the day without problems.

It’s a quite scary reading about all the problems that can arise from surgery, and not least the long term affects if the surgeons need to remove more than just the insulinoma itself. Since I am not drastically affected in my everyday life, I’m wondering I if really want to go through all that.

One thing I’m unsure about is open versus laparoscopic surgery. From what I have read laparoscopic surgery sounds much quicker and easier to recover from. Unfortunately, they do not offer this in Denmark, so I would probably need to do it abroad (and pay for it myself). Does anyone have some good information on the pros and cons of the different operation techniques?

Good luck to everyone,
Nicolai
Jackie

Saturday, 10th January 2009 at 4:40 pm

Sue, I am having a half moon incision side to side to make sure to have good visualization of the tumor. It was found after a CT scan. My surgeon is planning to enucleate the tumor and then do a internal scan to make sure there are no more. She said the laproscopy would have been possible if the tumor had been on the tail of the pancreas but not advisable with it located on the head. I asked her to look at my gall bladder and remove it if there are problems there. The hospital stay is planned 3-4 days and would not be surprised if it is longer. Can’t wait to not worry about the hypo events and the morphine pump. You and me both are going to do great and not long before we can start living a normal life again.
Heidi

Saturday, 10th January 2009 at 6:22 pm

Hi everybody, my name is Heidi

My husband, Michael, (age 49) is suffering with an insulinoma and we are progressing slowly though our medical system to get ready for his operation. We live in a smaller city in northern BC, Canada, and we have only limited access to the level of expertise needed, so we have been flying back and forth to Vancouver (800 km south) to get to the appropriately knowledgeable specialists. He has had 2 CT scans, as well as an MRI, and several rounds of blood tests, and they tell us they know he has a tumor, but haven’t actually seen it yet. At this point we don’t know a surgery date, but they have now found the ‘hot’ zone in the head of the pancreas during a calcium stimulation test run in November 08. He is scheduled to see the surgeon in Vancouver on Feb 3rd 09 and will then be given a spot on the surgical wait list. Interestingly, our medical system considers insulinoma to be an elective procedure, as the condition is ‘manageable’, or so they say. However, they do agree that it is imperative it gets removed with some urgency. The surgeon is supposed to be very knowledgeable, but is like talking to a grizzly bear. Should be a charming guy then!

We have had an interesting journey with this illness, although maybe not as dramatic as some of you, culminating in my calling the ambulance on April 17, 2008 because I thought he was having a stroke! He was so lethargic and talking gibberish, when he spoke at all. The paramedics recognized it as a sugar problem right away, but assumed he was diabetic and kept asking me about his medicines (he takes nothing). The first blood test was 1.7 but after IV Glucose and a two-day stay in emergency, he was sent home with a glucometer and instructions to not let his blood sugar get below 4 by eating 6 times a day. They did all kinds of tests while he was in hospital including a fasting test (he got down to 0.7 in 13 hours). The one thing everyone said was that they were shocked he hadn’t gone into a coma. Luckily we had a local internal medicine specialist with 35 years experience who told us it was a one in a million occurrence and he had only seen a few cases in his lifetime living in the north of our province, but that Mike should come through ok once the tumor is removed. Dr. figures he has had the tumor for at least couple of years, and he had gotten used to having low blood sugar and feeling down. He has been putting on so much weight the last 18 months, I had asked him to go on a diet with me since we could both afford to lose a few pounds. Who knew this was a symptom of a serious illness! That is apparently what set him off – reducing his intake by 300 fewer calories a day tipped the scales and he finally manifested the crisis. Now we understand why he was so tired and grumpy for this last school year.

We had a major trip to Europe planned for July and August 08, to pick up our 15 yr-old son who had been in Germany on a school exchange, and travel around to celebrate our 20th wedding anniversary. Drs all recommended strongly that Mike not go on this trip as he would be likely to get unstable and he couldn’t get travel medical insurance, with a pre-existing condition. Well, this trip has been planned for the last 5 years, and he eventually decided to go anyway. Since we have the tools to manage his situation food, juice, glucometer, glucose tablets and glucagon injector, we did decide to go. While we didn’t get to everything we had planned, due to Mike’s needing more rest every day, the trip went quite well and we have wonderful memories of our time traveling as a family to such interesting places. It did, however, delay the next step for testing and we are paying the price now with longer wait times for everything.

He is an elementary school teacher and is on his feet for hours every day. At this point, Mike works 4 days a week, but his sick days are getting more frequent as he gets exhausted so quickly. Luckily he is he has an understanding boss and co-workers. (these folks keep an eagle eye on him at school and make sure he is doing ok, for which I am very grateful).

It has been very interesting reading other peoples’ comments on how their surgery went and the recovery times etc. Once Mike has surgery in Vancouver and is released from hospital, he will be flying home (driving takes 10-12 hours in winter conditions) and we will see how things evolve. I can only describe this situation as living with a ghost. Mike is so tired by the end of workday that he is very quiet – sits watching TV or reading. A short dog walk around the block is too much sometimes. He just isn’t participating in our family life much any more. We don’t blame him, as we know how things are, but we will sure be glad to have the real Michael/Dad back. We have lots of snow in the winter and I have done most of the shoveling so far – he just can’t right now. Oh, well, I need the exercise too.

So, I will keep checking in on this blog to see how everyone is doing and we will post our updates as they happen. It is helpful to know that others are getting through this challenge. We know he won’t be having laparoscopic surgery, but we would prefer not to have the dreaded Whipple if it can be avoided.

Thanks for being out there and letting us know how things go – it helps you to not feel so alone with this ‘interesting’ problem!

Heidi
SUE

Saturday, 10th January 2009 at 7:53 pm

I am having my surgery on Jan. 28. Has anybody had their surgery performed at a New York Hospital ?I amgoing to have it done at Columbia Presbyterian. I am finding it unerving to not know exactly what will be done before they operate. It will either be an enucleation or a pancreas resection. How did you deal with the stress of not knowing what will be done until you wake up from surgery?
John

Sunday, 11th January 2009 at 11:41 am

Hi everyone and especially Jackie,

This should be my positively last word here because John is definitely coming out of hospital tomorrow night - hurrah!
I arrived today just as the drain was about to be removed and it was easy and painless for him. He asked if would hurt, of course, but the nurse said no - you’ll feel better without it and sure enough he did - immediately! It is long though - about the same length as the wound itself - 7/8 inches. John was amazed!

So Jackie, I really hope your surgery goes as easily as it possibly can - it IS a big deal, yes, but it’ll be only 9 days since my lovely husband and I walked into the hospital to begin this adventure. I did stay with him in the hospital the night before the operation and I know that was a comfort to him, and me, but even if that’s not possible where you’re having your surgery, your spell in hospital WILL go by! Just picture yourself walking back into your home after it’s all done. We’ve always done that if either of us has been going off to do a difficult concert and it works!

Angie - thank you for the tip about the towel for the car seat belt! I mustn’t forget it….and, reading back over your very helpful posts, he did have an attack of the glums after he came off the morphine - thanks for that!

The last thing I’m still worried about is sleeping in the same bed as him - please can someone tell me if it’s a good idea or a really bad one? I’ve made up every bed in the house because I just don’t know what those first days at home are going to be like. I think he’ll be quite nervous because there won’t be a nurse on hand to help
him whenever he calls - any advice gratefully received!

Very best wishes to everyone.
Fiona x
Angie

Sunday, 11th January 2009 at 1:12 pm

Fiona

I meant to get back to you about sleeping….

My husbands slept in our spare bed for about a week as any movement he made disturbed me! I was also worried about him knocking me whiile he slept but I suppose it depends on your sleeping habits and what you are happy with - he may want your comfort and be happier with you near.

I also slept on a lot of pillows as I couldnt lay vertical for a while - cant remember how long. I couldnt get up without them!!! I must say I slept in one position for ages as I found it very hard to move. It took a long long time before I was able to sleep on my stomach and to turn over without feeling the muscles ache.

I must have very weak abdomen muscles as they have taken ages to repair. I can feel them now still if i lean backwards but my yoga and swimming has really helped.

Good luck and wish him well on coming out!!

Angie x
pamela

Monday, 12th January 2009 at 9:34 am

Fiona,
I am so happy to hear John is coming along so well! You and your family will have a whole new life now that Johns sugars are back to normal! Its amazing how the difference in the sugars and health and well-being of someone and their safety around the clock is such an impact on everyone. My husband used to worry if i was in the shower to long, or if i made a mistake talking, or if i did not answer my phone…… because he was worried i was having a hypo attack!
Now, i run around endlessly, eating only when i am hungry, not because i had to. I have a feeling you will back to teaching and your concerts in no time!! Especially with The help of Fiona at your side! I am happy to hear another success story! Also, I slept in the same bed with my husband, but i think like Angie said, it depends on your sleeping habits. Aside from the snoring….. my husband is a pretty sound sleeper and does not stir a-lot. I had to sleep with a-lot of pillows and on my back for quite some time. Everyone is different, but i had a-lot of back pain. Even now my back tends to give me some problems. After a few months i was able to turn to my side. Keep us all posted on your progress! Best wishes!
Jackie and Sue
Thinking of you both and counting the days for you new lives to begin as well!!
oxox Pamela
Jane

Monday, 12th January 2009 at 10:28 am

Excellent news about John’s speedy recovery and no complications. My family put a bed downstairs as it was the summer and I was able to shuffle into the garden. Like the others who have posted I slept sitting up with lots of pillows. I recall I found it really difficult and painful to pull myself up into a sitting postion or to get out of bed. I had to rely on people giving me their arm to haul myself up by in order to take the strain off my tummy. I also held my abdomen tightly with my arms crossed or gripped a cushion across the wound when coughing or sneezing. Ouch! I remembering sleeping a lot for the first week and being amazed that even though I wasn’t eating I was acting fairly normally. Like others have said the not having to think or worry about eating takes some getting used to. Again glad to hear all is going well.
Take care,
Jane
Angelique Acolina

Monday, 12th January 2009 at 12:16 pm

Hi Fiona & John,
I’ve been reading on your recovery. I also went to London’s st Mary’s and Hammersmith hosp but no luck there so I had my surgery in Cordoba - Spain which is closer to home (Gibraltar). My surgery and recovery was similar to yours. I have a large scar too and found it hard to sleep at night. It felt as if my upper back was breaking especially towards the left side. It was no problem sleeping in the same bed as my husband but I had to sleep upright propped up with a few pillows. I bought myself a backrest from the Betterware catalogue which I found helped a lot. I hope you have a speedy recovery and guarantee you’ll feel better day by day. Its incredible!
John

Tuesday, 13th January 2009 at 4:24 am

Well hello there, all of you! John here - husband of the wonderful Fiona who has been keeping you all up to date with my procedure and progress.
I have indeed come through this, one lucky man, privileged, positive, determined. Initially, recovering from the surgery, I asked myself why I’d suffered so much for such a small insulinoma, even to the extent that I was angry at having been ‘forced’ to go through with the op at all. I know - irrational and wrong - but with this condition and no side effects, the only problem beforehand was the hypoglycaemic stuff and the temporary insanity and weirdness, certainly no pain. Now it was all pain! To feel so enfeebled so suddenly - just not fair, is it?
This silliness soon passed as I got proof of steady blood glucose levels and diminishing pain, increasing strength and ability to take longish walks about the hospital. My pancreas was doing its job properly, my scar was clean and healthy, my drain was removed, my appetite increased - all this within four/five days. I no longer resented it - now I feel only triumph.
Home feels sweet and familiar and non-threatening. You have to find out how to sleep comfortably, how to cook easily, how low to store the plates for easy use, how to do without booze and fags, how to get to the doctor’s surgery for follow-up (I am doing that today) and how to shower safely and comfortably.
I can’t wait to get visits from friends - to get less discomfort - to think about practising the piano at full speed and strength - to only having gluten-free demands in stead of all the sugar demands - and to return to concert-giving and teaching. Meanwhile - one day at a time…
Jackie, good luck next week. You have so much support from this forum and we shall all be rooting for your swift recovery.
To anyone else worried, anxious, unsure which way to turn, let me assure you - there is light at the end of this rare tunnel.
Look after yourselves - I shall be reading your thoughts daily with pride and compassion and increasing energy!
John
Angie

Tuesday, 13th January 2009 at 4:57 am

John

Glad to hear you are back home and on the mend! Its all good fun!!!

I never really could get to grips with the fact that so much fuss was made over my insulinoma, I had lived with the problems for so long it had just been “me” so when it was diagnosed I sort of felt “how did I get here!”. From being healthy and very rare visits to hospital and doctors all of a sudden I was going in for major surgery!

I know what you mean about the feeling that the hypoglycaemia seemed a small symptom to cope with against the major op, and when I was on the diazoxide coping with the water retention and the other symptoms it seemed pointless. Its when you read bits and pieces on here that you realise what extremes some people are suffering from this tiny hidden tumor and when you are told they could never know when you would start having those symptoms and start passing out yourself that made me realise just how life threatening it was.

A few people around me still think I was overdramatising - and Im not a drama queen in the least - and they still dont have any idea of what it all meant. All of my close friends and family were brilliant so it shows you who really cares when the chips are down.

Even now after almost two years I sometimes think “oh ive missed lunch!” and its almost a surprise to remember what it was like before. Its incredible that the body just reverts and acts as if nothing was ever wrong!!

Try not to laugh or cough and dont sneeze whatever you do!!!

Best wishes

Angie

Good luck to everyone about to cross over to the other side!! Life is so much less complicated and worth all the pain - I think! -
Angie

Tuesday, 13th January 2009 at 5:00 am

By the way in my earlier post about sleeping - I just had a ‘insulinoma moment’. I only sleep horizontally now as I kept falling over!

Angie x
Jackie

Tuesday, 13th January 2009 at 7:06 am

You guys are incredible. John, you expressed all the doubts I have been having about going to the hospital with to all outside appearances perfectly normal just to be brought down to a painful mess. It has entered my mind more than once why do this when all I need to do is eat. Then Angie shares the other part of the family that looks at you strangely and wonders are you having a “moment”, when I drop anything they make me sit down, my husband calls if I am late coming home from work. As wonderful as that is it is pretty tiring. So, next week I enter that tunnel back to normalcy. This group has been a true blessing to me. Through your willingness to share my questions are answered, my fears put to rest, and I don’t feel at all alone with this. I hope that one day I can give a margin to someone else that you guys have given to me. Take care all of you. I guess I am just feeling pretty emotional this morning.
Angie

Tuesday, 13th January 2009 at 7:27 am

Jackie

When I found this site I had been surfing the net trying to find any info on insulinoma, I have to have information about things and wanted to find everything I could. All I found was insulinoma for dogs and ferrets. When people started writing on it, it was great and I met one of the girls who was “up the road” in Brentwood and we still see each other now. Helen helped me through everything as she had been through it all a year before. With her support and this site I felt I could talk to people who really understood. We still compare notes now!!

I just want other people to have as much info as possible and try to help if possible. Many things I did not have to deal with like a lot of people on here and I was lucky to be diagnosed as soon as we realised I had some sort of problem - I thank my doctor for that who was really on the ball.

Anyway good luck - oh by the way after your op you will probably discover you had more symptoms than you realised, I found that the problems I had reading sometimes were down to low blood sugar and my eyes were oversensitive to bright lights! The only downside is I never really lost loads of weight but Id been fighting not to put on loads throughout (and for years before) so I could have been much much heavier anyway.

On that note im off for lunch!

Angie
pamela

Tuesday, 13th January 2009 at 12:05 pm

Hey everyone!
John so glad to hear you are recovering so nicely! Like you and Angie said it is so crazy something half the size of my fingernail gave such life-changing, dangerous, grief! i think back at how a surgery could cure someone who had suffered years, some of us decades. Jackie, it is scary facing surgery, but i think these insulinomas tend to get worse with time, as mine did. It got to where eating was not enough…. i had to constantly eat and drink dr. peppers and juices, not just one, sometimes two or three at a time. And as Angie said, you will probably discover that you had a-lot more symptoms than you thought. I had headaches, blurred vision, extreme fatigue, and often could not think clearly. Excluding the blood-sugar problems, i feel so much better over-all! Will you be admitted the day or night before surgery? I think many of us were that way to prevent any hypo attacks before the surgery.
Pamela
Jackie

Tuesday, 13th January 2009 at 6:23 pm

Pamela, I go in the day of surgery. I do the pre-op on Friday so will have more details then. I am tired of the wait now. It seems to be stretching out too long. At first I was like “no way”. And now I am thinking “why not tomorrow”. Part of the adjustment to all of this I think. My sister and my oldest daughter are coming to help out after the surgery. My sister is a nurse too and I am so glad she will be another set of eyes while I am in the hospital. My surgeon seems to be really on top of things and I am glad to have found her. It will be interesting to see what other symptoms I am having and not relating it to the insulinoma. I have serious fatigue and I am having trouble thinking. Horrible. Hope all that clears up. But, in reading some of the others experiences I think mine has not been as bad. Take care and thanks again for all the information.
Angelique Acolina

Wednesday, 14th January 2009 at 1:19 am

Thank you all for your recent postings of recovery. I have a patient/friend (Geraldine) who was diagnosed with insulinomas ??MEN. She calls me every so often to share experiences, as I was the first and only person in Gibraltar known to have an insulinoma. I told her about this website and I think she may have read recent comments of positive outcomes after surgery. She is gong into hospital on Sunday for investigations with a strong posibility of surgery. She is quite scared but has a positive outlook of being symptom free after surgery.

Jackie, I am praying for you - I know it seeems like eternity prior to surgery but once its all over, you’ll look back and believe it was all worth it. i got my life back after surgery and I can’t believe its been five years since. I can travel without the fear of collapsing and waking up in a foreign hospital, i can dance and exercise as much as I want and I don’t feel like a recluse with someone watching over me all the time in case I had one of those funny spells. Be strong and chin up! The only way is up, my girl!
Nicky

Thursday, 15th January 2009 at 3:43 am

Hi all, I’ve just been catching up on everyones progress.
Congrats John on a great outcome and to your family for getting you back to your old self. All the aches and pains go with each passing day and one day you’ll wonder what it felt like to be sore at all. Obviously it sounds like your bowel was left intact because you were eating again so quickly! My husband and I laugh now about my “cabin fever” experience over vertually being starved for the first 5 or so days. I was on nothing in intensive care except a sip of water and then from the 6th day they gave me a chiken stock cube disolved in water for brekfast,lunch and tea ( ooh yummy) I felt I was going nuts but it was one way to shed some of those excess kilos. Having my gallbladder out added to the digestion troubles but the told me that the risk of colicystitis ( sure I spelt that wrong) was high with this kind of surgery and that it was easier to remove it at the same time than to get infection complications later and risk another operation.
Now I can eat anything I like WHEN I LIKE.(except fried chips)
I’ve just arrived home after a weekend away with my younger sister which we haven’t done for years. It was such a great time. We went to Melbourne and just slept in, saw a 3 hour movie, skipped lunch both days and had great meals those nights. The best thing was shopping without having to stop to eat all the time,joy!
I really do have my life back after wondering in and out of doctors surgeries and med. proceedures for the last 3 years. Life is good.

Good luck to everyone about to get their lives back, be strong and be well.
Nicky

Friday, 16th January 2009 at 3:49 am

Hello again,long time no speak ha ha!
I was just reading a few of the new comments and wanted to add my 2cents worth.
Hello Heidi and Michael welcome to this great site.It was good that you got to go on your European hoilday but what concerned me was the use of glucagon by Michael. Not long before my surgery I was having so many hypos without warning that my doctor suggested using glucagon. I had heard of it before but I asked her to tell me exactly how it worked and what it was. As she scrolled down the information leaflet that comes with any medication that you get she read ” contraindication ; not to be used for insulinoma” maybe you should ask your doctor/endocronologist for more information. She explained to me that the medicine does give you a quick stabilisation of blood sugar but can then cause a sudden drop in sugar that can cause unconsciousness.

Hi Nicolai, I have had both a laporoscopy and an open surgery for this condition.Both times I was told to be prepared for either. The first, a laporoscopy, removed the tail of my pancreas and I did have a few post op complications with infection and fluid leakage. The second, and open surgery, was a little harder to recover from because you end up in intensive care for a while. Its hard to say one is better or worse than another because so much can happen at any stage. I must say that I dont regret any of it, I’m only 35 and I didn’t want to go on living so unstably for my own sake and my family’s.

Good luck again to all having tests and surgeries my thoughts are with you
Nicky x
Heidi

Friday, 16th January 2009 at 10:15 am

Hi Nicky

Thanks for the welcome. We have never used the glucagon, it was prescribed by the doctor for a last ditch emergency solution if Mike collapsed and we couldn’t get immediate emergency help quickly. We have used the glucose tablets more than once, but we usually notice when he is going down to a hypo state and I can get him to drink OJ asap. I am very good at watching him these days. Mike doesn’t always notice, but I sure do! It is amazing how quickly he tires and drops when he has done any exertions.

Bye for now,

Heidi
pamela

Friday, 16th January 2009 at 10:37 am

Stacy
welcome to this site! If i were you i would get a second opinion. My first endocrinologist had 5 years of blood work and every time i went to her she only made me feel like it was all my fault, and that it was my eating habits that caused my hypo attacks, even after having a seizer at a grocery store while with my 2 year old daughter at the time! I finally had enough and started researching hypoglycemia and found this web-site, and then really pushed a second doctor for the tests! You have to be persistent! Keep your faith and my prayers are with you for a quick proper diagnosis!
Michael and Heidi,
your story sounds all to familiar… so familiar it brings all the bad memories back of my illness!!! Living with a ghost is a good description! My husband always wanted to go to dinners, once in a while travel, business functions, and all became to stressful and scary. I could no longer enjoy anything, not even a lunch and shopping with friends! To Nicolai too….. (love your name! my sisters name is Nicola!) my insulinoma was in the head of the pancreas and was possible that it was going to be a laproscopic surgery, but decided to open me up… i have no regrets of surgery. my quality of life is that of a normal healthy person. With this illness i think it will only progress. Food will only keep you from getting the lows, but as time goes on, it will take more food. carbs, sugar to cover all the insulin thats being released in your body!! It only takes that one time not to have enough food to where you end up in the hospital or paramedics by your side! Yes, surgery and recovery was hard, harder for some of us, but it is so worth the chance to be healthy again!
Jo,
I had so many good days and so many bad days… you just never knew what the sugar levels would be. Explain your concern with your endocrinologist, ask for the 72 hour fast! BE PERSISTENT. Best wishes to all the newcomers and good luck!!
Jackie,
Less than a week for you to begin your new life. I am so excited for you. I know you will be writing as a new person in no time!! A healthy person!
Pamela
Angie

Friday, 16th January 2009 at 10:51 am

JO

This is odd as I have received a post by you via email but I cant find it on here - is my screen missing something?

You asked about having tests done on a good day - I was always worried about not finding the right result - not finding the tumor on the scans etc etc however I think they do so many and look at all the results together something will always show up irregular and they wont dismiss you. Many people on here have spent years trying to prove or find the cause of their symptoms and usually something will find it. I would imagine they will send you for a 72 hr fast test to test insulin and glucogen levels.

When you have a hypo and your blood sugar drops your liver kicks in and produces glucogen which is the bodies emergency reaction. this temporarily raises the blood sugar until hopefully the body gets more glucose.

When you have a 72 hr fast they have to test your blood quickly before that happens.

Looking back at my posts at the beginning of this site i had actually just been through a lot of the tests and they were much more detailed than what I can remember now. In the first few posts at the beginning of the site we discuss quite a lot of symptoms and procedures.

I had the 72 hr fast, an MRI, CT scan, calcium infusion and eventually an endoscopy. They had already found it on the first scan but they had to prove it was what it was then the surgeon wanted the best information he could get.

I had good days and bad days and could not find any reason for the difference, weekends I was always low but as I work from home on my computer there was no difference really to my week.

They reckoned I had had this for 10 years while it was growing as i had had mild sugar problems for some time. I had two children and nothing showed up until I started swimming every morning. That seemed to have pushed me over the edge, my body could not cope with the exercise and maintain the low levels that it had got used to so thats when i started having hypos.

There is always someone here who has something to add and help so good luck with everything.

Angie

I gather you are in the uk? because of the way you measure your sugar levels. Just ask - if you are worried and see what they say. Make sure you are at a hospital that knows what they are dealing with.
Angie

Friday, 16th January 2009 at 10:54 am

AAAh Ive just written a huge reply to Jo whose post has disappeared and my one has not been displayed and I cant remember everything i wrote in it!!!!!!!!

Whats happening?
Angie

Friday, 16th January 2009 at 10:58 am

Well it has now but not Jo’s!
Laura

Friday, 16th January 2009 at 11:38 am

Jo, I also recommend you insist on the 72 hour fast, that way any randomness is gone. All they do is you don’t eat and they keep checking your sugar. If it continues to fall then they know you have a problem. Very easy and painless!

Nicolai, as bad as the surgery is, the quality of life you achieve after the surgery is so worth it! You may not be having that many problems now, but really none of us know how long we have had the tumors. your lifestyle has a lot to do with your sugar level. You may be doing things just right now so that the sugars are not getting low. If that stops (whatever it may be), then you may experience the same awful things many of us have gone thru. Also, the tumor will continue to grow, bigger tumor means more insulin which also leads to more symptoms. I would strongly encourage you to have the surgery. One “funny” thing about this surgery is you never know what you are going to get until they open you up. I was told I had a 50% chance of a whipple, but I was fortunate to get an enucleation. My doctor also does not believe in drains because he feels they cause more harm than good.

Good luck!

Laura
Angie

Friday, 16th January 2009 at 11:59 am

Jo
Laura is so right - also you dont know if the longer you leave it the more chance it could turn cancerous. Mostly the tumors are benign but they can turn. Also the larger the tumor gets the more it may complicate surgery. I actually thought it may be better to wait but when the surgeon told me where my tumor was and how tricky it was going to be it was crazy waiting and then definitely ending up with a whipple.

Why cant I see Jo’s posts?

Angie
Janet

Friday, 16th January 2009 at 2:25 pm

Hello again to all who are on here, its such a wonderful thing that we can all share our experiences and its encoroging to hear the progress of John and several others since I have been following all the posts. Laura and Angie are so right Jo in as much that you undergo the 72 hour fast etc. However, I had an insulinoma removed(whipples) , only for a reoccurnece to happen mny years lter. As I have already had complex surgery I have been advised that further surgey will be really diffiucult and after consideration of the various and contradicting advice I have not had the second tumour removed. I have been taking large doses of diazoxide for a few years now and although my life is governed by the condition I do at least have a life, so surgery although the best for the majority and if I had not had the first one removed I would not be here to tell the tale. Insulinomas can become cancerous, but generally do not. I think the danger is the effect of severe hypos on your body. If you can get the insulinoma found and diagnosed get it removed as your life will be yors again. However, having had surgery for one and lived with another it is possible to do whatever is best for your case.I pray for everyone on here and wish you all my love.
Janet
John

Friday, 16th January 2009 at 5:09 pm

Hi all,
Fiona here again - just cos that man is concentrating on recovering - a bit too hard tho I reckon. He’s such a live-wire normally, being a concert pianist, teacher and ‘performer’ generally, that the operation and the aftermath are now proving very difficult for him psychologically and emotionally - and physically, but to a lesser extent I’d say altho I know he’d argue with that!

He’s still doing incredibly well tho physically. He had a check up with the surgeon today.(Luckily our daughter had a day off so she could drive him!) All is going great as far as the surgeon’s concerned. No infection or any cause for worry at all. But surgeons aren’t there to take care of your well-being are they….

It’s now 12 days after the op. (I can’t believe it’s that already!) and he was due to have the stitches out at the meeting today, but they’re not quite ready so he’ll go back next Fri to have another go. That’ll be 19 days after surgery but I suppose that’s not surprising really.

The drain hole is proving to be a bit difficult - remember I talked about oozers and non-oozers before? Well his is still oozing - nothing nasty, but it is still doing it! And I’m now back at work and I have to get up at 5am to get to my teaching job across London and it would be best if he could shower before it’s re-dressed each day - but that’s such a terrible early hour for him to do that! Our daughter is also working so she can’t help either and he can’t change it himself because if he sits up then he can’t see it below his ‘insulinoma paunch’ (rapidly diminishing!) and if he lies down he can’t see it at all!!! So yesterday when I’d left at 6am ,he had his first day alone and he managed the shower brilliantly but then had to walk up to the GP to get it dressed again. The surgeon says it will only be another couple of days but it’s far better to let the ‘ooze’ out and cover it than let it form a scab and possibly prevent that natural seepage from escaping. Sorry! All a bit yukky!

His other problem is ongoing pain - back pain mostly but also just unidentifiable internal pain and it’s this that is making him feel really very down. He takes his paracetamol and anti-inflamatories regularly but I think that with every day that passes, he thinks he won’t get it again and so when he does, he then starts to feel very down and a bit nervous that everything’s ok. I’m so sorry for him! - It’s not easy to watch him like that but it’s also good really tho, in a funny sort of way, because his natural optimism is with him every morning! And we try to keep upbeat with him! He lasts til around lunch time and then kinda slumps after that but I can’t get him to take things slower in the mornings because he’s so happy that he feels good and he wants to go on little trips or just do far too much - vicious circle!

So we think he’s being TOO optimistic this early on. No one is expecting him to feel normal yet! Except himself - and that’s the problem. He’s finding it very difficult to accept how he is, and will be, for at the very least another week. Once the daily afternoon/evening pain starts going he’ll perk up and start listening to music again, reading, writing etc.
I’m happy to wait til it happens naturally - there’s no pressure from anyone but himself.

Sorry to all the new people in here! Don’t be scared! This is a wonderful forum which has been completely invaluable to John and me. John said himself today that even tho it’s all a bit of a drag at the moment, it’s still so fantastic not to have any sugar problems at all now and not worry that he’ll suddenly start talking drivel or go into a huge exhaustion. It IS worth going through with the surgery!!! In fact, it’s not just worth it - it’s essential for a normal life in the future. You just have to be patient with the recovery time - everyone who’s had the surgery in here says the same. I just hope my man gets the message soon!

Very best wishes to all.
Fiona
Stacy Green

Friday, 16th January 2009 at 10:12 pm

Thank everyone for your messages. What a great website. I wrote for the first time on Jan. 9th. Have been having soo many problems with my sugar. I am on my second Endocrinologist and have a suspended drivers license because the first endo reported me to the DMV for my low sugar. This condition completely changes lives. It is comforting to see that many of you understand me.

I really want to know if I could have an insulinoma but it is not showing up in the labs done during the 72 hr fasting test. Has anyone experienced this??? During test my sugar dropped to 37 and the lab didn’t get there in time. Then it dropped to 48 this was all in a 24 hour period. Had an endoscopic ultrasound the doctor saw something but my endo said it could be anything but NOT an insulinoma because my blood test don’t show it. I am soooo frustrated. I just want my doctor to care more and try harder!!!

That fact, the constant low sugars, the fatigue and lack of concentration seem to point to the insulinoma that so many of you talk about. I really want to get to the bottom of it. I cannot function and it is hard to work and do normal things. Once my sugar drops under 70 I feel symptomatic. Today I ate and in on time my sugar dropped to 62 and I had a 54 reading Wednesday. My sugars are so random and it is so hard coming back after a low. I have to eat and drink something with sugar and then wait for it to rise before I can function again.

I am going to USC medical next the top doctor that I am supposed to see is booked until March of course there is not urgency to see me. My referral is urgent but I can’t see him until March. I am looking into seeing another doctor because I can’t wait. Things are getting progressively worse. I have been having low sugars for years but never to this extent. It is depressing and hard to explain how I feel all of the time. I am not a complainer and I want to keep how I feel to myself but that could prove to be dangerous since my sugars drop so rapidly and I have a 3yr old. My husband has been awesome and supportive and I make sure I tell him my lows and how I am feeling because he has had to talk to the paramedics or doctors on my behalf many times now after I have become incoherent. Praying for answers and praying for you.
pamela

Friday, 16th January 2009 at 10:16 pm

Ok i think the site is acting up a bit i do get e-mails that someone has posted, but when i go to the site they are not there! UUmmm are you all getting mine? I hope so!
Pamela
Nicolai

Saturday, 17th January 2009 at 3:07 pm

Hi All,

Yes, the website is definately acting up. It took my first post several days to show up - just saw that it was on now! But this is such a great forum, and I really appreciate everyone’s input.

My insulinoma was found by endoscopy (1cm long in tail of pancreas), and just got my CT scan results which didn’t show anything. I’m getting more scans done next week.

I can really relate to what many say when learning about the surgery - you don’t want to go through all that “just” because of some blood sugar symptoms. But since so many have experienced a deterioration in their condition, I believe Laura (and the rest of you) are correct in saying that surgery is the way to go.

To Nicky and Pamela, I appreciate your input regarding surgery. I have been very lucky to find a doctor with expertise in laparoscopic operations, and he will look at my case to see if it would be possible to remove the insulinoma laparoscopically, otherwise I’ll do open surgery at my normal hospital. I think it depends on how close it is to my spleen, which they may need to remove.

To Stacy about a diagnosis. From what I have read and heard from my doctors, it is a matter of testing 4 things when you have symptoms after not having eaten: Blood sugar, insulin, proinsulin and C-peptid (the last two are pre-stages of insulin). If the blood sugar is low, the other 3 values should also be low. If insulin, proinsulin and C-peptid on the other hand are high (mine were all at the very top or above the normal ranges) this is a sign of an insulinoma. When the blood sugar is low, the pancreas produces very little insulin, and the values are high bacuse something else (an insulinoma) is still producing insulin. I have a medical research paper about the testing if you are interested.

I wish everyone the best, and hope you have a healthy recovery!

Nicolai
Angelique Acolina

Sunday, 18th January 2009 at 3:19 am

Hi Jackie and all who are undergoing investigations,

I really empathise with you as i spent 3 years going to Hammersmith Hospital trying to get myself sorted. I was diagnosed in August 2000. I underwent all the tests in spain confirming I had an insulinoma. Then i was sent to St Mary’s in London that same November where I underwent all the same tsets again! Returned back to Gibraltar days before xmas and was referred to Hammersmith in Jan 2001. I had all the teats done again including the 72 hour fast. It was after that fast that they had doubts to me having an insulinoma as the insulin levels had gone up but not the c-peptide. They even had the cheek to suggest I was administering myself insulin to make myself sick!!! I had to return to Hammersmith throughout the year for check ups and more tests and it made me more confused. It was in summer 2002 that they came to a conclusion that i was suffering from reactive hypoglycaemia. I came back to Gibraltar and asked my doctor for a second opinion to be seen in Spain. My hypos became worse and I went into a comatose state when I collapsed. I was seen in Cordoba - Spain where they repeated the calcium stimulation test and said the tail was riddled with nodules. The endoscopy also suggested there may be one at the head of the pancreas but the surgeons wanted to perform an open laparotomy to do an internal scan of the pancreas. I had this surgery in Oct 2003 and had the insulinoma removed. It was 1.5cm on the neck of the pancreas. They removed most of my pancreas and my spleen and I still have part of the head. My sugars are now very stable and my quality of life is 99 percent better. All of you out there - life after surgery is LIFE, before that, i was just existing so I tell you guys to persevere and have faith. Thinking of you all.
Angelique Acolina

Sunday, 18th January 2009 at 3:23 am

P.s Sorry I rattled on but the message is maeant for Stacey who is having problems with the 72 hour fast. Mine was repeated about 8 times.
Peggy

Sunday, 18th January 2009 at 1:51 pm

Stacy,

Where did you have the fast done? I had a few 72 hr. fasts, one doctor would say I probably had an insulinoma and another would say the insulin was not high enough to prove that I did. I had to live with all the scary symptoms for 15 YEARS because they couldn’t find it! I finally went to UCLA and USC, but the endo’s just tried to help me “manage” it. Ridiculous! Tell whatever doctor you see at USC you want to see the surgeon Dr. Parekh. Hopefully HE will order a CT and they’ll find that thing! Their equipment and technicians are the best around. I had 3 endoscopy’s, multiple CTs and MRI’s etc. at other places wich showed nothing. They found it immediately at USC and I am healed!! Just be bold and insist that you have the CT. Don’t take no for an answer. I’ll meet you up there if necessary and talk to them with you!
I know how frustrating living with this disease is. No one understands unless they have lived with it themselves. My faith was strong, but was tested. Remember endurance is faith stretched out and that perseverance is the intended outcome of the testing of your faith. Thank God for your supportive husband, and persevere!

I’ll keep you in prayer,

Peggy
Jackie

Sunday, 18th January 2009 at 2:34 pm

Pamela, your posts are showing up and thanks so much for all that you share and all of your encouragement. 3 days to go and I can tell you I am really nervous and pretty emotional. It will be awesome to get his over with and get on the road back to normal. I am so tired all the time and I hope that is going to improve after this. I went shopping yesterday and on the way back home was unable to finish what I was saying to my daughter-in-law because my thoughts got so confused. I bought a candy bar at Target because I could sense something was happening. Good thing I had it. And lately I tear up over everything. I think it is just the anxiety of facing surgery. I am a basket case right now. Before long I will be writing along with everyone else encouraging everyone to get surgery over with and claim your life back. That is my hope.
Stacy Green

Monday, 19th January 2009 at 1:28 pm

Hello Everyone- I often get choked up reading the posts because someone understands me.

Nicolai-Thanks for the advice. I have had two 72 hr fasts but the first one was unsuccessful because I got sick so I only truly count one. I would be interested in the research paper thank you for offering.

Angelique-Thank you for the words of encouragement. Wow, eight 72 hour tests that is alot. My last test was so traumatic because they couldn’t draw blood easily when they needed it so I was badly bruised and incoherent with a 37 blood sugar. The doctor still said it is not an insulinoma even with my drastic lows. Thank you again.

Peggy-I really appreciate your testimony about your experience. What a long battle. I am supposed to see Dr. Peter Singer or Dr. Jorge Mestmen at USC but they are both booked through March and April. I was also given the name Helen Baron. Did you see any of these doctors or have you heard of them? I was told I can see Helen Baron the soonest because she has more clinic hours than the other doctors and the two male doctors are supposed to be the best in the field. My insurance will only let me see an endocrinologist not a surgeon. Thank you so much for the name though so I will know who to see. I have read several posts but did not see when you had your surgery and how it went. This has been sooo hard and I pray that things go quickly because things are getting worse. I have to eat constantly just to feel good and I still go low. What were your sugars like? Thank you for your great advice, support and kindness. You are doing the work of the Lord and he is smiling on you for caring about others.
Nicolai

Monday, 19th January 2009 at 2:17 pm

To Stacy,

You can find the article here (which I got from a another insulinoma patient):

http://www.hbpdint.com/upload/PDF/200531793810124838.pdf

I have found quite a few scientific papers on insulinomas, although I have mostly focused on the different surgical options.

Good luck,
Nicolai
Peggy

Monday, 19th January 2009 at 8:43 pm

Stacy,

After living with insulinoma for 15 years, my mind and body learned to adapt to low sugar. In the 4o’s I could feel totally normal at times. The danger was that I could drop too low very quickly and be out of it without any warning. One time, I picked my daughter up at school and stopped at a store, while inside I had a “feeling” I should check my sugar and found that it was 27! Who knows what could’ve happened if I had gotten in the car…Insulinoma is not predictable! Just because I was fine one day doesn’t mean I would’ve been the next. I have some questions…
Have they put you on diazoxide?
If they found a growth on your pancreas, what do they think it is??
Where did you have the 72 hour test done? Is the doctor that read the test qualified to say that the results do not show insulinoma? I don’t think many physicians are since the disease is rare and they don’t have enough personal experience. When I had my 72 hour test, my sugar went low and then increased as yours did. The bottom line is how high your insulin level was when your glucose was at your lowest. One time my insulin wasn’t high enough to confirm a diagnosis even though my sugar was in the 30’s. I also had two endoscopy’s at UCLA that didn’t find it.

As far as insurance goes, it took me over 13 years to get to UCLA,USC! I did see Dr. Baron, twice. She seemed to think I could manage it with the diazoxide. You can debate that and have her refer you to thier surgeon. I saw him for two minutes, and he ordered the CT. Saw him again for 5min. and my surgery was scheduled.

There’s a chance you do not have the disease, but they better make darn sure you do not!
I’m not usually this stern by nature, but after suffering for 15 years I definitely can relate to the frusturation you are feeling.
I began reading this blog when Angie poted her first comment over a year ago. I was so discouraged by that time, I couldn’t even post a comment. My daughter Lacey posted for me on Feb. 24th ‘07. She showed me how to pull up only one persons name and get all their posts…I’ll see if I can remember how. My surgery was done on Feb. 14th ‘08…It’s a whole new world!

Peggy :)
pamela

Monday, 19th January 2009 at 10:04 pm

Stacy,
I am so frustrated for you. The endocrinologist i saw did the same exact thing… blood sugars read below 40 and in the 30s countless times and she insisted it was my diet. my fault. Later going over the medical records that i had from her to have transfer to my new endocrinologist stated that i needed a psychiatrist, that she believed i had an eating disorder. I was 6 months pregnant and weighed 160 pounds. By the time i became pregnant with my second daughter 18 months later, my sugars were spiraling out of control, and i did not know what to do, and seeing her every three months for her to tell me “you are just not eating right” was not getting me anywhere. I asked her to recommend me to another doctor,or Mayo Clinic… And she said ” i am just not going to do that, i think you can control this with your diet.” After i had my surgery, i had my husband put the 9 page hand written letter in the mail telling her everything she did wrong, and she needed to do some research and learn some valuable lessons. after all she truly made me believe i was crazy and eating wrong. I suffered for 5 years. I wrote down this web-sites address for her to see some of the other people who have been misdiagnosed as well. And the other awful thing about it was i cant even count all the dietitians and nutritionists that i went to and i did exactly what they said to do, and then getting the worst lows i had ever had, one resulting in a seizer. I know you are awaiting your other doctor appointment, and its difficult doing the waiting game, but just for your doctor who is So Sure you do not have an insulinoma, go by the office and leave a packet. Do what i did… print all these blogs…. takes forever………. a huge packet…… and even print off the web-site that Nicolai sent Which was very interesting , thank you, and let him or her know that your sugars should not be at these crazy dangerous levels, there is something wrong, your eating and eating, and having lows, ask for another scan of some sort. i had 2 ct scans…. it was an mri that found mine. Then i went to southwestern med center for another mri to make sure! Then met with my surgeon to discuss the surgery date!! BE PERSISTENT ,
BE PERSISTENT! And i am praying for you! Hang in there!
pamela
Jackie

Tuesday, 20th January 2009 at 6:54 am

Stacy, my prayers are with you that you will find the right person that will do the right thing by you. How frustrating and so easy for someone to say you are not eating right. Good grief, you can’t eat enough. I never thought I would get tired of eating. Keep fighting for you. This is an awful disease and so frightening to go through the hypo attacks. I agree with Pamela, take this information to the physician. One thing that helped with my diagnosis was my fasting sugars were dropping but my insulin levels were rising. The last one my fasting was 41 and my insulin levels were 45. I never had to do the 72 hour fast.
Janet

Tuesday, 20th January 2009 at 7:04 am

Stacy.
I can only echo everyone elses words of comfort to you. I so know how frustrating this is for you and although its little help, I am feeling this every step of the way for you right now. My prayers remain with you and also with everyone in our world that suffers from this awful condition. Take care and keep your chin up and remember we are all with you. Prayers and love.

Janet
Angie

Tuesday, 20th January 2009 at 7:42 am

Stacy

Ive just re read all the posts as (not all all!! just all since you posted!) as I having been reading all the advice everyone is giving you and had not seen yours. Take comfort in what everyone is saying! - whoever says your symptoms are down to bad eating habits is talking out of their backside (polite).

Even if you are eating sugar all day and seesawing up and down your insulin levels would react in sympathy - you may not be that healthy but it wouldnt stop your pancreas working!!!

Doctors make me really cross! If its not insulinoma what are they saying it is???

All I can say is read Peggy’s posts as she went through this for so many years but eventually got a diagnosis. Insulinoma is so unpredictable. Being stubborn would seem to be your best option. Make a really big fuss!

Good Luck will be thinking of you!!

Angie

Ps everyone, may be coming to Orlando next Easter 2010, who ever is near???
Kim

Tuesday, 20th January 2009 at 8:22 am

My goodness, there has been a flurry of activity on this site lately. I was beginning to think insulinomas were becoming obsolete - unfortunately not.

I just want to say congrats, good luck and best wishes to everyone who has had surgery, is facing surgery and is still trying to get diagnosed.

Having an insulinoma was, for me, one of those life changing events, the kind where you think in terms of “before the insulinoma” and “after the insulinoma”. I think that when you have it, you are somewhat in survival mode - just rtying to get through the day, eat enough to keep your blood sugars up, dealing with the crashes and being fearful for another crash. I didn’t realize until after my surgery the full impact on my life of having an insulinoma. Being a single mom (with teenagers thank goodness) with a job and several animals large and small to care for, there was a constant feeling of not being able to keep up, not being able to do what I needed to do to take care of everyone, and a lack of confidence in my body to hold up. It was terrible.

My body healed quickly form the operation. If I had been sick for a longer period of time (i.e. had a longer couch potato phase!), I probably would have been in worse shape physically and taken longer to heal. However, as quickly as my body healed, it took my mind much longer. Anxiety from facing situations where I’d had a bad crash, or just that terrible feeling you all are familiar with that you’re just generally “losing it”. Learning to trust in my body again - that it has the strength to keep going even if I’m tired or hungry despite the alarm bells that are going off telling me otherwise.

People don’t understand what a toll this illness takes. If you don’t have cancer, its no big deal. I have never felt so alone and I have learned so much. Challenges only make us stronger. That is so true. Learning to override that anxious voice in my head has been an invaluable lesson. Mind over matter is right and sometimes neceassry for your survival!

I am thinking of all of you and wish you all the best. This website has been an incredible source of comfort and information to me. Thanks to all of you! Sorry for rambling!

KIm
pamela

Tuesday, 20th January 2009 at 8:29 am

Hi Kim,
well said…. could not have described it better!
Pamela
Heidi

Tuesday, 20th January 2009 at 3:54 pm

Kim,

Love the phrase “couch potato phase”, it describes Michael so well. He hasn’t been to work since struggling through last Thursday, and has had low blood sugar all weekend. He says it is like living with a low grade flu/cold - no energy, not interested in anything. His numbers haven’t been above 3.6 (65 in US), all week. As a teacher he has to do lesson plans for the substitute teacher on his days away, and he is even finding these a challenge to complete these days.

I have just had some surgery myself; needed some plumbing repairs which I have been putting off for 8 months waiting for him to get sorted out. So now I am a captive couch surfer and need him to ‘manage’ the household to some degree. We decided to go ahead with my surgery because we know he will not get his before 6-8 weeks, which is my recommended healing time. Of course, I filled up the freezer with food beforehand, and the two ‘men’ (Colin is 15) should be able to do a few loads of laundry and run a dishwasher once in a while. As I read your assorted comments I am really beginning to realize that Mike has probably had this a lot longer than any of us knew. He has been feeling lethargic and lower energy for several years.

I do find it interesting that some of you have had such difficulty getting diagnosed. Mike was diagnosed very early, although every move up the chain of command required a few more confirmation tests. But all the doctors have agreed that this is definitely an insulinoma. What they don’t know yet, is where exactly it is. He had a calcium stimulation arteriogram last, and that gave them a ‘hot spot’ in the head, but not exactly where. The endocrinologist he saw in Vancouver had considered putting him on the diazoxide drug, but felt it came with its own challenges, and so far, Mike was remaining relatively stable with frequent testing and eating. He was warned that he had to test just before driving a car, since if he had an accident, and could not prove he was stable before starting, he would be considered at fault no matter what. So, absolutely no long distance driving for him until this is finally dealt with. Our frustration has been with the length of time it takes to get through the chain of command to finally get to a surgery date. In Canada, we have government-managed health care, and there are too few beds and services, and too many people needing them. Sort of like the NHS in England. We cannot go private in Canada, unless we went to the US at our own cost and that would not be possible to afford.

Right now, my biggest challenge is that he is busting out of all his clothes with the weight gain. One young student stuffed his backpack under his shirt and said he was going as ‘Mr. S.’ for Halloween. The students sure do notice things that are going on amongst their teachers. Several have asked him why he gets to sip OJ during class, when they are not allowed any food or drink in the classroom.

So here we are, one invalid looking after another in our house for a few weeks, but I know I will get to return the favour once Mike gets his operation done. I will have to be in Vancouver with him, and leave the teenager and pets at home alone (now that really scares me!) until I can bring him home to recuperate. At least we have some family in Vancouver, so we will have a base for operations while away from home, and several friends will try to keep an eye on the kid and pets for me, as we have no family in Prince George.

As many of you have said, it is nice knowing that although this is a bizarre club we belong to, we are not as alone as it sometimes feels. That is what this blog does for me.

Thanks!

Heidi
Stacy Green

Tuesday, 20th January 2009 at 11:42 pm

Peggy-Thank you for the advice and insight about USC it is very helful. I had my 72 hr fasting tests at St. Joseph hospital in Orange (Orange County Ca.) Dr. Madu is the endocrinologist that requested the test. She said there is no insulinoma due to the blood work even though I had a 37 sugar and 48 within the same day. I contacted USC again today, I am being VERY persistent. They said I can get in to see an endocrinologist named Peter Singer Feb. 26th. Peggy have you ever heard of him? He is supposed to be one of the best. I know I just need someone who is knowlegable and open minded. I most of all need someone who is willing to help me. I was really hoping to get in earlier because I am so tired of what I going through. Each day I wake up and have no idea what the day will hold. I have to trust God more than ever because is it such a scary situation. Now fighting for my drivers license is hard. My doctor just filled out a Driver eval that says my condition makes me an unsafe driver. Thank God nothing has ever happend behind the wheel. I have a three year old and I want my quality of life to be good for her.

Thank you all for your support and care. I am a middle school teacher and I have been gone off and on depending on how my days go. I feel I am constantly trying to explain my condition and telling people I am not a diabetic. My father and two sisters are type one diabetics so my doctor often says that is probably my problem. She says i am probably on my way to becoming a type one diabetic too. I am just ready to get to the bottom of this. I want my life back. I want to be rid of the low sugars, fatigue, forgetfulness and all that comes with this condition.

This site is a God Send…again thank you all for taking time to share your stories.
Angie

Wednesday, 21st January 2009 at 6:36 am

Stacy

Sorry I just had to comment… Is your doctor sympathetic? Its just that she has said you are on your way to being diabetic!!

Its the complete opposite of Insulinoma! You have too much insulin - diabetes is when the pancreas doesnt produce enough!! Shes odd!!!

Angie
pamela

Wednesday, 21st January 2009 at 8:49 am

Hey Jackie,
I am sure you are preparing for your surgery tomorrow, and very anxious, scared, and excited all at once! Hopefully you can have someone write in and tell us how you are.i know you will do well, and be a new person and a new life before you know it! I have heard good things from the team at southwestern medical that Carolyn Garner is a great doctor and experienced with these tumors. So you will be in good hands! what time is your surgery? My prayers are with you for a successful surgery, fast recovery, and a healthy new start in your life!!!
oxox Pamela
Jackie

Wednesday, 21st January 2009 at 9:31 am

Pamela, you will not believe this but I am running a low grade fever and have a slight head cold. I am waiting to hear if my surgery will be put off or not. I am so frustrated right now. Thanks for the good feedback on Dr. Garner. She said she had done 20-30 of these and I have been really impressed with how she has handled everything. Will post when I know what is going on.

Stacy, keep fighting the good fight. Hopefully this new doctor can get on top of this.
Angie

Wednesday, 21st January 2009 at 10:09 am

Can anyone see my comments?
Can you see a blue flag across the bottom saying “awaiting moderation”
If so can you post that you can see it and Im not wasting my time writing???

Im beginning to get paranoid!!
Angelique Acolina

Thursday, 22nd January 2009 at 6:46 am

Hi Angie,
I can see your postings. I don’t have any problems receiving your mail. Were you treated in the U.K? Where did you have your surgery?
Jackie

Thursday, 22nd January 2009 at 8:42 am

Hi everyone, I am off to surgery this morning. They did not cancel it because of my head cold. I am so glad. Do not want to think about this anymore.
Angie, I can see your posts too.
Angie

Thursday, 22nd January 2009 at 8:50 am

Hi Angelique

I didnt realise but ive used another email so its moderating my replies because of that!!

I was treated at Barts then had surgery at the Royal London in Whitechapel.

I have to go back every year to check my blood results as , quote “I was young to have this condition and it may return although unlikely”
I was just pleased to be classed as “young” for something! Ha ha!

Originally I went to my doctor because I was always tired, when my results showed I had very low blood sugar we talked it through and then of course I mentioned all the other symptoms that I hadnt really thought about before. I just thought it was me and I had trouble when I went without food for some time, I never realised there was any condition that caused it!!

It all snowballed after that. I was referred to Whips Cross my local hospital but they immediately referred me to Barts. Within 6 weeks roughly I was in Barts having a 72 hr fast!

It all happened in 10 months really right up to surgery.

They reckon Id had it for about 10 years. My body had got so used to existing on low blood sugar for so long, it took a little extra regular excercise to push it over the edge!

One occaision was really really odd - I started training for the race for life, and I mean walking, I had just left my house and walked 500 m when my whole body from chest down started tingling, we walked for I and half miles in all and I was such a mess when I came back all over the place pins and needles, shakey, the lot. Couldnt explain it at all. I was slightly concerned and wondered what was going on. It was a couple of weeks after that I hurt my back and went to the doctors so at the same time asked for a blood test.

All wierd! Needless to say I didnt do the race for life that year!!!

I may try that walk again now - !!! well sometime!!

Angie
Angie

Thursday, 22nd January 2009 at 8:53 am

Jackie

Wishing you really good luck and hope all goes well - we will all be here waiting for you!!
Thinking of you!

Angie
pamela

Thursday, 22nd January 2009 at 9:33 am

Jackie,
I am so glad your getting this horrible thing over with!!! best of luck to you, and God Bless!!

Pamela
SUE

Thursday, 22nd January 2009 at 9:41 am

Jackie,
I wish you all the best. i am scheduled for surgery on jan 28. The waiting is making me anxious. I can’t wait for it to be over with. I was told yesterday that I will be having the whipple operation. Did anybody have that? What was the recovery like?
How long was it?
Janet

Thursday, 22nd January 2009 at 10:39 am

Jackie

I wish you all the best for your surgery; my prayers and thoughts will be with you. The whipple op is a longer recovery and its no use pretending that its easy, but it is a lot much easier than coping with having an very overactive insulinoma. Just take each day at a time and focus on being hypo free. Each day will be so much better than the next. Please let us all know how you are as soonas you re able. God be with you.

Love Janet xx
Janet

Thursday, 22nd January 2009 at 10:43 am

Sue.
My prayer and thoughts will be with you too on the 28th. I was getting mixed up, it is you having whipple. Try to just focus on recovery, as I said its not easy, it took me two weeks in hospital and it was 3 months before iI was anything like, but 6 months to be really on top of it. But every day really does get easier and its such a relief to be rid of the insulinoma. God bless you.

Janeti
Kim

Thursday, 22nd January 2009 at 10:18 pm

Sue and Jackie,

I’m thinking of you. It is a lot to go through but is nothing compared to dealing with insulinoma-itis! Take care of yourselves and be patient.

Best wishes,

Kim
Peggy

Friday, 23rd January 2009 at 12:33 am

Jackie and Sue,

I too am praying for you both, I can’t wait to hear that it is all behind you!

It’s good to hear from you Pam, and Angie and Kim…
I’m so caught up in this “new” life, it’s hard to stay in touch, but we are bonded forever. :)

Stacy,

Wow, I didn’t know that your family was diabetic. Maybe you are… Before being diagnosed, did any of them have the same symptoms? I was actually told by an endo that I was on my way to diabetes as well…
Insulinoma seems to depend on if your body kept producing a lot of insulin even when your sugars were as low as they were. I’m assumiing yours did not? I would call that Dr. and ask if the test results were conclusive, or if they were absolutely sure that they proved that you did not have an insulinoma. I’m sure you will be bringing those records to Dr. Singer. Yes, I have heard that he is good. You’re fortunate that he will see you so soon. Just be patient and keep eating! I drank soy milk all day long instead of eating constantly. It would bring me up quick enough, and I wouldn’t crash quite so fast. The surgeon said that I was the only one that he had seen that was not over weight. But do what you have to do! The 26th will be here soon enough. I will pray that God will keep careful watch over you.
I worked in a classroom throughout my disease, snacking constanly. I would wake up some mornings with a bedroom full of paramedics, and then go to school, with a huge headache I might add. (If they could only learn that we only need a small amount of dextrose to wake up!) I know it’s hard to explain, most people aren’t going to get it. But God did send one or two people in that 15 years that were always looking out for me, making sure I felt o.k. and they always had food available if they could tell I needed it. I broke down quite a bit, It is a humbling experience. But everything has it’s perfect work. I know your 3 year old is your main concern. You want to be there 100% for her. My 17 year old lived her whole life with me being sick. It’s taken it’s toll on her, but I have to say that God used even this to bring about His purpose in her life. So nothing is for not, at least not in the christians life.
I know it’s a bummer loosing your license. I didn’t drive for a year, but I assured them that I had people keeping watch over me and driving me. I learned to check my sugars everytime I got in the car and only took short trips.
So far you’re the closest person to me with this disease.
If you’re interestd in talking, maybe I can email my phone number to Jon and he would send it to you…
Jackie

Saturday, 24th January 2009 at 8:26 pm

This is Jackie’s son Damon. I visited mom at the hospital tonight and she gave me direction to come to her house and post an update for her. Her surgery was Friday morning @ 11:30 and everything went well. She went in with a slight cold and fever and held onto the fever until this morning. The tumor is benign, praise God. Mom was in a lot of pain all day Friday and through out the night. About 5:30 am this morning she woke up and had her sister help get her out of bed and take a bath. I saw her twice today and each time she looks better. I helped her take a light stroll down the hallway. She’s working on her breathing treatments to help get her lung capacity back to normal and that seems to be helping her recovery. Her pre-op blood sugar was 59 and her blood sugar was in the 150’s today. She says her head in general feels very clear today.
Mom specifically wanted me to send a big, virtual hug to Pam for sending the flowers to her room. She got them today and they are very pretty and thoughtful. This community has helped her in ways that we’ve not been able to. Thank you all for your support, advice, encouragement, and stories. Mom has really leaned on all of your experiences. I will post more after I see her tomorrow. Thanks again Pam and everyone here.
Sincerely,

Damon Gray
Peggy

Saturday, 24th January 2009 at 9:57 pm

Damon,

Please tell your mom how happy I am, as I’m sure all of us are to hear that another insulinoma victom is cured!!

Peggy :)
pamela

Saturday, 24th January 2009 at 10:47 pm

Jackie, Damon,
so so so happy to hear all went well, and each day does only get better and easier! best wishes to you and your family!

pamela
Stacy

Sunday, 25th January 2009 at 1:31 am

Angie-Thank you for your concern. I read your post from 1/21. My doctor does not seem to be sympathetic at all. I have found that many nurses in the hospital praise her, but she has no bed-side manner. She is very harsh and not personable. This is why I was hoping for a second opinion. I need a doctor that cares about my well-being. I mean, I’m not saying she is heartless I just think she is confused about what is going on with me so she turned her back on me.

Pamela- Thank you for your words of encouragement. I am literally taking one day at a time. I feel sick everyday!! -You are an angel for sending Jackie flowers!! May God bless you!!

Peggy-This is in response to your post on the 23rd. My current doctor, Dr. madu is very confused, so she is saying I may be on my way to being a diabetic. She said the same thing about me being a possible diabetic when I first started seeing her. Then she saw my very low sugars and said no it can’t be diabetes. Now she is back to saying diabetes again. I am so confused by her and I think she is frustrated that she doesn’t know what it is. She said it is not an insulinoma for sure and she continually said this, however she said I should go back for a second endoscopy in a year. I was wondering why go back if you are so sure it is not an insulinoma? So, I am hoping, praying and believeing that Dr. Singer will be able to help me. I don’t remember if I put this in one of my other messages or not, but I had an endoscopic ultrasound at UCLA and they found a growth. My doctor said there is a lesion/nodule in the head of my pancreas but my blood work doesn’t show insulinoma. I want to know if this can happen. Can there be an insulinoma if the blood work doesn’t show it? Also, my cortisol was low, so they thought I had an adrenaline deficiency.
This is so hard. I am sick daily. I was at work Thursday and I began to feel shaky. I had eaten breakfast and it was not quite snack time. I have a One touch machine so I checked my sugar and it was 54. I got scared. I became very incorherent before at 68, so I know I am becoming immune to the low sugars. I keep going and sometimes by the time I check my sugar it is too late.
I don’t know if you dealt with this, but my head often feels foggy, like my sugar is constantly dropping. I also am having blurred vision more often. I am irritable and anxious. I also am extremely tired all of the time. The exhaustion has been going on for a long time. I have been dealing with low sugar for over 10 years, but I can say over the last year or so things have gotten progressively worse. So many of the stories I hear on this site sound so similar to mine. I am going to push for more tests when I see Dr. Singer- I hope he knows what to do.
Angelique Acolina

Sunday, 25th January 2009 at 3:26 am

Damon

Thank you for writing in and updating us all on your mum’s recovery. I’ve been thinking about her all this weekend and I’m so glad she is recovering so well.

Sue
Also thinking of you and hope the time comes soon and speedy recovery when you can put all this past you. It’s a new life we are given after surgery.

Angie
I didn’t have a good experience in Hammersmith Hospital but maybe if I had got sent to Bart’s instead, I would have been diagnosed quicker. In hammersmith, they too came up with the conclusion that i was too young to have an insulinoma so they’d decided I had reactive hypoglycaemia instead. i was only 27 at the time.

I have a surgeon friend who works in Barts and in the royal Marsden. He says Bart’s is an excellent hospital in London.

Has anybody had their spleen removed in surgery? How are you treated? I had a pneumovax injection initially and they told me I needed it every five years. Last October it was five years since surgery but because I was pregnant and now breastfeeding I still cannot have the booster jab. Our winters here in Gibraltar are quite cold and humid and I’m scared of coming down with a really heavy cold.

Love to you all xxx Angelique xxx
John

Sunday, 25th January 2009 at 4:22 am

Hello all,

Fiona here again. I’ve been waiting until Jackie had her surgery before giving an update in John because she was so worried and scared about it - but I’m thrilled she’s through it! Do keep updating your mum’s progress Damon!

Unfortunately (or fortunately for them I guess!) there are always more people in here waiting for surgery so I won’t get too bogged down with details but I thought I should let you know that John developed an abscess deep inside near the wound site about 2 and a half weeks after his op on the 4th Jan and he’s been back in hospital since last Thursday. It has been cleared and he’s on strong antibiotics now and should be out again on Tuesday. A bit of a set back and he got very depressed as it was developing but he’s feeling better already.

So I suppose I’m trying to say that if there’s any kind of downturn when things have been going well, then get straight onto it! - don’t delay like we did. It’s hard when you see someone every day - you don’t notice changes as easily. But my mum did - she hadn’t seen John since he was in hospital the first time and she knew immediately things weren’t right and the hospital treated it very seriously and very quickly so all should be ok now.

And he is on the mend properly now! His sugars are still stable too so he’ll start to feel the benefit of that as soon as he regains his confidence that it was all worth it!

Very best wishes to everyone here and especially to anyone about to have their surgery. Please don’t get discouraged by this post, it was just very bad luck for John!

Fiona x
SUE

Sunday, 25th January 2009 at 8:18 am

Damon and Jackie I am so happy that everything went well . i hope that you have an easy recovery.

Fiona I am sorry to hear about John, but it sounds like he is in good hands.

Thank you to those who have given me their good wishes. I will be having surgery in three more days. I am very nervous, but at the same time looking forward to having a normal life again, not having to eat all the time, not having to take blood sugar readings all day, and not being afraid of having hypoglycemic episodes.
Janet

Sunday, 25th January 2009 at 12:08 pm

Damon,
So pleased your Mom is through suregery. Give her all our love and blessings. Brill news.

Fiona, Sorry to hear about Johns setback, hope all clears up soon and that he will be back home again.

Angelique

I had my spleen removed as well as half a pancreas many many years ago and hav coped very well without it. Have to have the jab every five years and it was suggested I take penicillin (low dose) all the time, but I do not do this. The spleen removal has not made much difference to me.

Janet xx
John

Sunday, 25th January 2009 at 12:48 pm

Sue,

Thank you so much - I wish you every success with your operation - here’s to your future health and hypo-free life!

John was loads better today and he even made me bring in his scissors so he could cut his beard! He proudly told me that he had good old roast beef for Sunday lunch too and he was hungry again by 5pm - hungry! Imagine that! He won’t enjoy putting on any of the weight he’s lost over the last 3 weeks but to see him actually go ‘Yum!’ when his food is brought is fantastic.
It looks like he’ll be out on Wed now and I’m very very happy for him to be in there until everything’s properly ok.

Fiona xx
pamela

Monday, 26th January 2009 at 11:24 pm

Sue,
you are in my prayers and all the well wishes are sent your way! Please get back to us soon on your progress, otherwise maybe someone can post for you! I hope all goes smoothly for you, with a quick recovery! God Bless You!!
Pamela
Gibraltar

Wednesday, 28th January 2009 at 4:16 pm

Hi All,

Just to let you know that Angelique Acolina has passed away on the 26th. Unfortunately I do not know the reasons.

I am sure no-one here has actually met her, but seeing as you all have shared so much I felt it appropriate to pass this on.

In case you wish to check: http://www.gibnews.net/cgi-bin/gn_view.pl/?GOGX090126_2.xml.

I wish you all well.
Crystal

Thursday, 29th January 2009 at 5:37 am

Hi everybody,

I am reading your posts since a while, and today I decided to write mine.

I am a French 30 year’s old woman. I had my first hypoglycaemic spell beginning 2006.

After having two 72h fasts, I was diagnosed as Insulinoma in summer 2008.

I am now under Diazoxide 150mg/day, it improved a lot the things but don’t do all. I still have some low readings in the 50’s.

I had a sonography, CT, MRI, which didn’t show anything, and an endoscopy which show something heterogeneous in the head of my pancreas. Not enough to be sure that’s the Insulinoma. So no operation planed yet. It’s hard to wait. Next attempts to localize the tumour will be in spring time with the same techniques and the ocrteoscan.

How many of you have been under Diazoxide treatment before their operation? To which dosage? And did you have some hypoglycaemia under Diazoxide and 5 to 6 meals/snack per day?

Do you know anyone to who I could send my last CT scan, as there is something appearing that one Doctor told me that could be the Insulinoma and the other one didn’t know?

I hope I am still readable even I did some mistakes in writing.

Thanks

Crystal
Crystal

Thursday, 29th January 2009 at 8:03 am

Hi again,

In fact during my first fasting test I was down to 36mg/dL (2mmol/l) at 40th hour of fast and I was unable to speak, to articulate correctly, as it is usually during my spontaneous hypoglycaemic spells.

And during the second one, at 6th hour I was at 45mg/dL (2.5mmol/l) and had huge difficulties to walk, another of my symptoms during my spells.

Overnight, I usually have profuse cold sweats, but I have never been able to test myself at this time, and usually awake with strong headache.

How was it for you during your fasting tests: glycaemia/symptoms? And do you have night sweats too?

Thanks

Crystal
SUE

Sunday, 1st February 2009 at 8:15 pm

Hello,
This is her son Zach
My mom is doing good she got up and was walking yesturday and today a good amount of distance and she has been on a liquid diet. She has minimal pain now and is feeling ok.
Jackie

Sunday, 1st February 2009 at 9:23 pm

Hey everyone, thank you so much for your kindness, prayers, and good wishes. This is Damon again. We had a slight set back in that mom’s pancreas was excreting pancreatic fluid around the area where the tumor was removed. The doctors assumed this may be a complication and they were prepared. On Friday, 1/30/09 the doctors placed a small stint in the pancreas to somewhat seal the opening created by the tumor removal in order to drain the fluid into the small intestine instead in and around the pancreas. Mom’s spirits are well but she’s restless, and ready to come home. Earlier this week (Monday) the doctors put her on clear liquids and then solid foods on Tuesday. Her drainage bag was showing too much pancreatic fluid levels so they put her back on IV nutrition to see if the fluids would decrease. The fluids did not decrease quickly enough and the doctors were concerned about pancreatitis. So they stinted her and have her on IV nutrition. Tomorrow starts clear liquid diet. Her fluid excretion is under control, her glucose levels are excellent, her body is sore, and she plans on coming home Tuesday or Wednesday this week. I will print out everyone’s wonderful comments and take them for her to read tomorrow. She will definitely love to read everyone’s postings. Have a great week and probably the next posting you’ll see is from mom herself. You all are great. We have thanked God for his blessings and for connecting mom with you all.

Sincerely,

Damon
Janet

Monday, 2nd February 2009 at 5:58 am

To Sue, Jackie and Sons!

Thanks so mcu for keeping in touch. Glad that Jackies is through her surgery but sorry to hear of the setbacks. It souds like the medical people are on top of the situation though and hopefully all will be back on track soon. God is good and is looking after us all. I will continue to pray for everyone on here. Love to all.

Janet
John

Monday, 2nd February 2009 at 6:33 am

Greetings to all and good luck to everyone! This site is truly heartwarming. John here - on the mend properly now, I believe, one month exactly since the surgery. The setback caused by the deep abscess, nasty, painful, energy-sapping and nauseating, added up to about five days only - and despite still having a drain in and a few minor problems with flushing the wretched thing with saline and snapping the connector, I feel so well. A check-up CT scan tomorrow should show that the abscess is gone and then they can remove the drain. I don’t know about you folks but I do not like drains. They make stuff you don’t want to see much too visible! They itch where they enter! The need to aspirate and flush the thing is not pleasant - but then again, I am feeling great so it’s a small price!

I have been so well treated at King’s College Hospital. Aftercare was great - reassurance and advice was available on the phone - I have not one complaint. Reading some of the postings here makes me appreciate how lucky I have been. Everyone who has concerns, please go ahead and make this happen. It’s not a walk in the park - but the resultant well-being, brain-clarity, confidence, sanity and strength are definitely worth it. You soon forget the pain anyway.

I wish all o us well - and thank all of you for your wonderful mutual support.
John
pamela

Monday, 2nd February 2009 at 10:41 am

Jackie, Damon
Thank you Damon for the update!
sorry to hear of the setback! Jackie, it does sound like you are in good hands, and your doctors are on top of everything! And as John says when all is said and done the surgery is a small price to pay for getting your life back! Hope you continue to heal and make a quick progress!
Sue, Zach
So glad to hear you are doing well! Cant wait to hear how you come along, and here of your progress as well! Best wishes to you all!
John,
Your story here i know is a huge inspiration to all those who are having symptoms, trying to get a diagnosis, or awaiting surgery…. it is so great to hear of another insulinoma successfully cured! God bless to everyone here!
Pamela
Janet

Tuesday, 3rd February 2009 at 7:30 am

Hello everyone!

First of all Gibralter. I am very saddened to hear about Angelina nd also quite shocked, it feels like losing one of our family, having all shared so much. I am so sorry and please send our prayers and thoughts to her family and friends. It is so sad.

Crystal! Welcome and hello.

You are certainly in the right place here with your symptons which everyone of us on here understands. It is very frustrating when the symptons point to insulnoma but the tumour is difficult to find. I have had one insulinoma removed and now have reoccurence which I have not yet had removed. I have been taking diazoxide now for 10 years. I take 600 mg per day, 150 mg , four times a day. It is a lot but any less and I am still passing out or having severe hypos. I also take bendroflumeathizide to get rid of the wter retention caused by the diazoxide.
I do cope, its matter of having too, in fact I do have several days at a time of being sympton free and thn for no appaent reason the symptons are still there even with medication, but the diazoxide has really give me a life. Please let us know how you are and any changes you have. I live in the UK.

To everyone else recovering or just sharing their thoughts on experiences, my thoughts and prayers are with you all.

Janet xx
Angie

Tuesday, 3rd February 2009 at 9:08 am

Gibralter

I am so shocked that Angelique Acolina has passed away! From your link is didnt seem to be anything medical rather an accident! Please send all our condolences to her family!

Life is just too short and unexpected!

I dont really know what to say now so more later…..

Best wishes to jackie of course hope all goes well.

John glad to have you back fighting fit!!

Welcome Crystal!

Angie
tatia batz

Tuesday, 3rd February 2009 at 10:22 am

I was so upset to hear about Angeique. Even though we never met as many of us have not it is truly like losing a friend. We have all shared so much of the same experiences and we have a connection. My heart goes out to her family and children. Please pass along my thoughts and prayers. She will truly be missed she offered so much and touched all of our lives.
Tatia
Laura

Tuesday, 3rd February 2009 at 10:31 am

Crystal, welcome! I would definately recommend contacting another doctor to have him look at your scans. I sent mine to Dr. Cameron at Johns Hopkins in Baltimore, MD. You really need to deal with a surgeon that knows about and is comfortable with insulinomas. I did a ton of research before I was diagnosed and if you do not eat and your blood sugar continues to fall, the only possible reasons are insulinoma or diabetes. (Diabetes means your pancreas does not work so when you eat, you get very high sugar as you have no insulin, and when you don’t eat, you get low blood sugar if you are doing any sort of activity at all.)

If there is any sort of mass on your pancreas, I don’t know why they would doubt insulinoma except that they are very rare. I believe there are doctors at Mayo Clinic in MN that do consultations as well, but in the event that you had to travel to see the person, MD would me much easier from France than MN. (your English is very impressive, I can’t imagine trying to express these concepts in a foreign language!)

As for night sweats, I never had them, but it is a very common side effect of low blood sugar. I used to wake up between 4-5am to have a snack so I would not have super low blood sugar in the morning. The best thing you can do to control your sugar is to eat small meals about every 2 hours. My diatician recommended my meals be about 24 carbs which is very little, way too small to be considered a meal in my book. If you can do that and check your sugar all the time, that is the best you can hope for I think until you get a diagnosis.

Good luck!
Heidi

Tuesday, 3rd February 2009 at 1:18 pm

Hi everyone,

I just spoke with Michael who has been seeing his surgeon, Dr. Charles Scudamore, at Vancouver General Hospital this morning. Dr. Scudamore asked Mike to stay in Vancouver until Friday as he is arranging to have an endoscopic ultrasound done on Thursday. If he doesn’t find anything on the endoscopic exam, he is going to arrange for an arteriographic ultrasound in the next couple of weeks. He is fairly sure that it is on the head, but hopes that it is on the surface and not embedded too deeply. He has advised Mike that he is going to try his best to find the location of the tumour beforehand, which would allow him to have the laprascopic vs. open surgery, barring complications.

Apparently, Dr. S, thinks the tumour is around 10 mm in size, based on Mike’s symptoms, and that is good in terms of being able to manage the illness daily (not as severe as those with larger tumours) but makes the tumour much harder to find. Dr. S. is a specialist in pancreatic and liver cancer surgeries, and told Mike that because the tumour is so small, it won’t be cancerous (Yahoo!) He also said if he can do the laprascopic surgery, Mike could be back at work in as little as 2 weeks. (this I have to see!) So more back and forth to Vancouver and the costs of flying are mounting. We have to cover this expense ourselves. Oh, well, I would pay anything to get him healthy and back to normal.

I am so hopeful that this will be over this spring and we can get back to our real lives.

Bye for now….
pamela

Wednesday, 4th February 2009 at 11:12 pm

Gibraltar
i am deeply saddened and shocked as well about Angelique. i feel horrible for her family and two young children especially. She just had a baby in November????? she was so positive and clearly very happy. my deepest condolences to you and your family, you all are in my prayers.
Pamela
John

Thursday, 5th February 2009 at 2:28 am

The sad, awful news of Angelique and the comments from insulinoma sufferers who still fight to get their diagnosis and/or treatment, both make us think deeply and search for ways to make the condition more ‘public’, more talked about, more accepted and understood. This forum is fabulous and so expressive - we must all keep commenting and updating and supporting one another.
My own experience has been so easy compared with many others. Today I shall see my surgeon for a post-op check-up and, I hope, sign-off. He will remove the drain that was left in after removal of the unfortunate abscess - that setback was just my bad luck - very nasty but not foreseeable - and I have such respect for him and his team. They don’t get to deal with insulinomas on a daily basis after all, and each time they do one, they learn and improve their techniques. I have definitely benefited from those who went before me! The next ones will benefit from my experiences. That makes me both humble and proud.
I feel as if I have lost a whole month of my life and, before that, was on hold for the best part of a whole year, anxiously searching for those answers and solutions. But now my life is nearly back to normal and definitely will be by March. I can give concerts and restart my teaching - and the whole thing will be like a sabbatical!
The cure is drastic - but the condition is unrelentingly depressing and scary.

Good luck to all who are having a bad time. Good luck to all those recovering. We must talk about this - lots and loudly!
John
Jackie

Thursday, 5th February 2009 at 3:52 am

Hi everyone. I am still in the hospital and not able to sleep. They are letting me use a computer to help me get sleepy I hope. I can’t read all the comments tonight but am just so sad about Angelique. I do feel as all of you do that a family member is gone.
John, great you are about to be signed off. Even with my couple of hiccups I feel better now than I have for the last year.
I am waiting to hear if they are going to replace my stent today. My pancreas is leaking and they placed a stent last Friday. It helped but I developed mild pancreatitis. I hope I can talk them out of it and that they will just let me go home. I feel great and think this will resolve itself in time without more intervention.
Thanks everyone for your thoughts and prayers. You have all been the rock I have held onto.
More later
Heidi

Thursday, 5th February 2009 at 1:30 pm

I just heard from Mike as he was released from the post-op department after a 7 am appt with an endoscopic ultrasound procedure. After some confusion yesterday when he insisted that he would need a glucose drip if he was fasting, they went ahead and sedated him (with the glucose on board) and proceeded to find two ‘lesions’ after about 1/2 hour of searching. Apparently, the 2 lesions are one larger and one smaller, but no indication of how deep or where. He will be speaking with his surgeon tomorrow to discuss the next steps.

Although he was exhausted by the experience, he is thrilled by the news and hopeful for the possibility of laprascopic surgery again.

John, it is wonderful to hear that despite a setback, you feel so optimistic about your future and you feel ready to restart your life. I can’t wait to have my real husband back!

Heidi
Peggy

Thursday, 5th February 2009 at 11:09 pm

I am happy to hear Sue is doing well and Jackie, are you home yet?

Heidi, I don’t understand why they don’t know where Mikes tumor is located after having an EUS??

I can’t believe Angelique is gone…she just posted on the 25th!? I am so sad for her family, and new baby that will never know her mom. :(
John, your right, we need to keep talking about this illness
at least people are being healed faster than they were. Every day is so precious, isn’t it.

Stacy,
They found a nodule on the head of your pancreas, wow! Who read the results from your blood tests?
Yes, I experienced all the early symptoms of foggy head, blurred vision and anxiousness, as well as severe depression
after having too many lows. After awhile the symptoms changed and it was harder to know that my sugar was so low.
As someone else commented, at one time I, too, was accussed of shooting insulin! Well, the 26th isn’t too far away.. Be ready to have All your questions answered when you go to USC. Don’t leave until you are satisfied!

Peggy
Stacy

Friday, 6th February 2009 at 1:06 am

peggy- Yes, they found a nodule in the head of my pancreas. The lab report from UCLA says it is a hyperechoic area in the pancreatic head that is 7 x 7. My current Endocrinologist read the results and my former Endo disregarded the results and told me I was fine and he would see me in 2 months. My current Endo said the nodule could be nothing because my blood tests don’t show an insulinoma. I have a small growth in my pituitary gland that has been there and has not grown for years. My doctor said the nodule in my pancreas can be compared to that growth and since nothing was done to remove that she doesn’t think this should be removed either.

It is all so hard. I still don’t know if I could have an insulinoma without the 72 hour blood tests showing it. It is frustrating to be sick so much. I had a good two weeks though. I have been eating hard boiled eggs in the morning and peanut butter. Just trying to get enough protein to sustain me. I was getting low and wouldn’t feel it until it was too late. I live in constant fear of going too low while I am asleep.

Thank you for your encouragement and concern. I am looking forward to seeing Dr. Singer at USC on the 26th. I am praying for answers and to not be turned away with nothing. I believe things will go well. His office already requested that I send all of my medical records directly to his personal fax. That is a good thing in my opinion.

So Sorry to hear about Angelique-She was a caring woman
Kim

Friday, 6th February 2009 at 9:36 am

Hello all,

So, so sad to hear about Angelique. We all have such a bond that in some ways brings us closer than others we encounter in life because we all understand what we’ve been through. We don’t know a lot about her personal life but I’m sure she leaves many with profound grief for her passing.

John, glad to hear that you are on the mend.

Sue & Jackie, I was so touched by your sons’ writing to keep us all informed, really nice. Hope you are doing OK.

Crystal, welcome. You’ve stumbled onto a wonderful place. We’re glad you’re here and we love to help!

Heidi, I ended up at Johns Hopkins to search for my tumor because they just weren’t finding it up here. I had a CT scan and an octreotide scan at JH and they were read by some very experienced radiologists. The first two tied - one said yes and one said no, the third one said if it’s not an accessory spleen (a mistake they made once), its an insulinoma. So I had a liver/spleen scan and the mass didn’t light up which meant that it wasn’t an accessory spleen. So they went ahead with surgery, not entirely convinced but enough so. Turns out there was an accessory spleen but not where the mass was. Makes me wonder about radiology up here - I had a CT scan and an endoscopic ultrasound here. I guess these tumors are very hard to find and you need the best equipment and the best radiologists to read the scans etc.

Take care everyone!

Kim
Jackie

Friday, 6th February 2009 at 9:11 pm

I am home!!!! I asked for more time before they replaced the stent and the physicians agreed. And already the drainage is less. So it is highly possible I won’t need another stent. Can’t tell you how shocked I was to hear I was going home and was out of the hospital in two hours. And oddly was really scared. Two weeks in the hospital I guess had given me a kind of security there. Today is better and I am so excited to be home.

Peggy, the symptoms you have are exactly what I experienced. The fatigue was awful. One day I drove around Dallas for an hour and could not figure how to get home. And I could not reason out how to pull over or use my cell phone. It was so scary. I also had cramping in my hands, foggy thoughts, and visual changed that made buildings lean or get really close together.

The removed my gall bladder as well. It was nonfunctioning and the surgeon said it was so bad they probably would have not been able to do a laproscopy. I am expecting they will have to deliver my bill by special courier and several delivery people.

Thanks everyone again for all your prayers and concerns. What a blessing you are all to my life. Next steps-remove staples, remove the stent and remove the drain. Can hardly wait.
Heidi

Saturday, 7th February 2009 at 1:14 am

Hi Peggy

Actually, the doctors know, but we just haven’t been able to get the all details from them yet. The EUS was performed yesterday by a Dr. Weiss at VGH. Mike only met him at the beginning of his procedure while he was being sedated. Once he woke up in recovery, the Dr. was not available to talk to as he had squeezed Mike into a very busy surgery day (as a favour to Dr. S and this test is only available in Vancouver). Dr. Weiss left Mike a note saying he found two lesions, and Mike was to talk to Dr. Scudamore for more info.

I just picked Mike up at airport and he was not able to reach Dr. S. at all today, as Dr. S was in surgery all day. But, we expect to be able to talk with him early next week to hear what the EUS actually showed.

Based on the calcium stimulation test done in November, we are still assuming the tumour(s) are in the head of the pancreas, because that was the hot spot indicated at the time. He had already had 2 CT scans and 1 MRI done earlier in 2008, none of which found anything. Dr. S told Mike it is definitely insulinoma, and they would be able to get it out, he just would prefer to have the option of laprascopic if he can.

Of course, we are antsy waiting to get the info from all these procedures, but Mike is just another patient in a large line-up of people on waiting lists for surgery dates to them. Dr. Scudamore’s specialty is doing liver and pancreatic cancer surgeries, and those are his priorities, since it is life-threatenlng. Mike is sick, but able to manage if he monitors and keeps himself fed properly, so we have to wait a little longer. Actually, this makes me feel more confident about Mike’s surgery, since Dr. S. is really experienced with pancreatic tumours and has dealt with insulinomas before.

Ultimately we will be ok and I feel good that we at least are being taken seriously and haven’t had all the challenges some of you are experiencing in getting a firm diagnosis. Luckily, Mike’s illness has been recognized from the first time he collapsed and we are close to the final installment now.

I think our biggest challenge is that while Canada is an enormous country, we have a very small and spread out population of only 35 /- million people, and our high level medical services are concentrated in the largest cities. If you don’t live in one of those centres, you have to travel long distances to get to the right people who can help you. Since Canada has a national health system, you are automatically prioritized based on how urgent your case is. Shorter waits for surgery for heart and cancer problems, a bit longer for everything else. We are lucky this is not a life or death situation, at least not yet, so we have to wait our turn. At least we will not be bankrupted but having to pay thousands of dollars to get his medical treatment or have to convince an insurance company that we need to see a specialist.

Jackie, welcome back to your home - I bet it feels great to be back in your familiar surroundings.

Bye again….

Heidi
Jackie

Saturday, 7th February 2009 at 10:59 am

Heidi, I am so glad you are seeing progress. It is a great hope and I can tell you he and you will get your life back after surgery. Even post op I was 200% better than before surgery. So hang in there, tell him to eat, eat, eat. If I had a big hamburger and fries for lunch I did not have those attacks until right before dinner (amazing that now I could eat that stuff and had to eat that stuff I did not want it). I took glucose tablets with me everywhere and did not drive until I took my sugar. You just have to keep a close eye on the sugar so you don’t drop below you ability to logically thing what to do next. My surgeon asssures me I may lose up to 50 pounds just from having a successful surgery. I am down by 11 already. You probably already know this so forgive me if I am preaching to the choir.

I have no idea how large my bill will be. I had one day in ICU and 13 in the hospital. They did an internal ultrasound during surgery and I had another CT scan and stent placement. I expect they will have to drop load the itemized statement by helicopter. Fortunately my husband has insurance through American Airlines. Their benefits were better than mine so I went with his. And he is retired military so we have that for secondary. I hope that covers most. But if not, once I am better I will be willing and able to work a second job and feel priviledged to do so because I feel so much better.

All of you please have a blessed and happy day.
Kim

Saturday, 7th February 2009 at 1:06 pm

Jackie - Welcome Home!!!I know what you mean about feeling safe and secure in the hospital. With regard to your driving story, I remember going to a yoga class because a naturopath told me I was stressed out with responsibilities at home and needed to be in a space where someone else was in charge for a change. Well, the class wore me out and I was feeling pretty loopy by the time I wobbled to my car. Driving in my condition would have been challenging enough but wouldn’t you know there was a bike race going on and I had to manouver past bicycles all the way home. I was so scared! It was so hard to concentrate, I was so worried about hitting someone. I was totally freaked out by the time I got home. That’s why this illness is so dangerous because when you don’t know you are ill, you can get yourself into all kinds of predicaments.

It’s been interesting hearing a bit about health care in Canada. I’m sure there are misconceptions on both sides so its good to hear from someone who’s actually going through it.

Heidi - I’m so glad you feel comfortable with your doctor’s experience. That is so important! I’m sorry you have a wait but it must be good to know that you’re headed in the right direction.
Janet

Saturday, 7th February 2009 at 2:10 pm

Hi Everyone.
So glad you are home and back on here Jackie so welcome back. Just so glad to hear you are now stepping up your recovery. Great news!

Love Janet
Jackie

Sunday, 8th February 2009 at 7:20 am

I don’t know if this is the right thing to ask but can everyone tell me when they had their surgery. I am a late comer to the site so don’t know all the timelines. I know that Sue is currently recovering but I am not sure who we have that is waiting to either be diagnosed or have surgery. I am just one of those people that have to catagorize I guess. Or it is the pain meds taking control. So if this sounds crazy just ignore it.
Angie

Sunday, 8th February 2009 at 4:33 pm

Jackie

My op was 2 years ago on the 6th February!!! It has come round so quickly I cant believe it! The funny thing is we had a terrible snow storm the night after my op and I vividly remember waking up and looking out the hospital window to see this amazing amount of snow covering everything!
This week in England, you must have heard, we had the same again!

Kim

I know what you mean as well about those feelings of being safe and secure in the hospital, I was in for two weeks and it was so easy in a way with no responsibility and I didnt have to think about outside problems and troubles. Although I wanted to go home to my family and boys, I was really scared to leave the security of the hospital. Even now if things are stressed and Im upset I almost long for that sanctuary! I can really imagine how people get institutionalised after being in hospital for along period of time especially if older and on their own.

Heidi

I felt that my Insulinoma was treated with quite a high priority, I think I said earlier that at the beginning of my diagnosis I didnt take it seriously but the hospital did! I then began to realise exactly what could happen. Really for the NHS to diagnose and treat me within 10 months was amazing. I read on here everyones experiences and thank my lucky stars i caught it when i did and that I had very few serious episodes. I think if it had gone on much longer things really would have taken a nasty turn, I now think my body was at its limits.

Regards to everyone!
XX
Angie
Angie

Sunday, 8th February 2009 at 4:41 pm

Heidi
(sorry)
My point was - before I started rambling- I would have thought you would be fairly high priority, this is classed as a life threatening condition especially if it progresses to black outs and other de-abilitating episodes!

Good Luck

Angie
Heidi

Sunday, 8th February 2009 at 8:04 pm

Angie! We get at least that much snow every month from November to April here where I live. we were in London for a week in summer 2008, and I can imagine how bad it got. We do, however, we have snow plows and studded snow tires on our cars. we can get down to -35 C, and have 30 cm in 24 hours on a regular basis. Lots of fun and good exercise shovelling the stuff.

Right now, I am fine with how things are going. Mike’s situation doesn’t seem as dire as some of our other friends on this blog. He hasn’t had a black-out since that first one that I called the ambulance for. He is just exhausted, but we are so lucky that he had over 90 days of banked sick time that he has been able to use for rest days. Of course he has used quite a few since April 2008. He is so fed up (sorry for the pun), to have to eat constantly and the weight gain, but it does keep him functional. He just hates the finger pricks!

At the beginning of this experience, it seemed that we were moving very slowly through the system, but we do feel that we have make a lot of progress in the last few weeks, just getting to the surgeon and having the EUS procedure. I guess it was most frustrating that we didn’t get any results from the first CTs and MRI scans. Now we have some answers and we just need the operation to fix it all.

I do understand what the surgeon said about his cancer patients and liver transplants taking the highest priority. However, since this week’s meeting, Mike feels that he is on his surgeon’s radar and they are going to handle him with care and attention. So, now we are just waiting for that phone call and booking the flight for our run down to Vancouver at short notice.

The good news is, we know that this is fixable! Everyone here who has been able to share their experiences with us rookies has given us hope that we are close to the solution and a return to our normal lives.

Thanks,

Heidi
Jackie

Sunday, 8th February 2009 at 8:11 pm

Heidi, I hope Mike can get moved up on the surgery list soon. What a difference this will make for him.

I have a question for the group. If you went home with a drain how long before the amounts started to decrease. The last three days mine are increasing but I am eating more. I am concerned I am facing another stent placement. Just wondered what any of you have experienced. Mine go from 270 cc to up to 430 cc.
Jackie

Wednesday, 11th February 2009 at 7:51 pm

I am scheduled to have my stent replaced on Friday with one that is longer. This one should cover the area and seal where the leak is. The hope is that it will facilitate the healing of that area. Boy, I hope so. I am so ready to get rid of the drain and I have not had it nearly as long as many of you. Hope all of you are having a great week.
John

Thursday, 12th February 2009 at 3:22 am

I continue to read and marvel at people’s struggles to get diagnosis and treatment - and to share in people’s frustration, and their elation at each improvement and victory over this pernicious, debilitating and frightening condition. Jackie - how I appreciate your frustration with drains! They are such a drag, so ugly and so inconvenient, the dressings around them always a mess, the sight of what emerges so distressing - but when they are taken out, wow! Relief! real excitement!
I lost my last one a week ago, the one which drained the abscess. I now have no holes at all, no dressings, nothing unsightly. Five weeks on from surgery, bruising remains all over my belly but is fading fast. I massage the main scars with vitamin E oil occasionally - someone said that was a good idea! - and am getting back to real, full life. My appetite is good and real where, for so long, it had been non-existent because of all the food I was forced to eat! This weekend I shall start with the private students. In two weeks I intend to return to teaching at school, just two days a week to start with. I am playing the piano every day - and can still play OK! Surprisingly the fingers don’t weaken even over two months, and techniques are not lost.
Fatigue is still an issue but lessening. Tenderness still there inside but not bad at all.
One month from now I shall celebrate my 60th birthday - and what a celebration that’ll be! This huge experience has dominated life for nearly a year - nothing compared with some of your experiences - but I feel like cheering out loud that I have beaten it - a victory!
May all of you achieve that victory, too! It is a good feeling. I sympathise and share with all of you. Good luck!
John
Jackie

Thursday, 12th February 2009 at 5:03 am

John, what you describe makes me think we are twins. Amazing that this is so distinctive. You have encouraged me so much to just keep on each day with a wonderful end in site. I get my staples out on Friday and I had thought about getting some Vitamin E oil to work on the scar. Not that I plan to ever wear a bikini but just thought it might soften it some. The scar is so minor compared to the horrible events the last year. I am still on medical leave for at least 3 weeks and will be returning to restricted work. I think April 1st I am on full function. But you know I am still calling and emailing and unoffically working now. I am so-o-o-o-o bored. I see each day that my sugar is normal a victory. I still check it once a day. Guess I just can’t believe that part is over. Congratulations on returning to your students. You will be even more enriching than before. I don’t know if it is the same for you but life is so much for precious to me now.
John

Saturday, 14th February 2009 at 4:03 am

Is there a charity or fund-raising facility out there for research into insulinoma? I just get the feeling that surgeons and, especially, doctors, are forced to work in the dark with this condition. Each of us is adding to the pool of experience - but we are so few! No doctor is going to see more than a handful of cases during his entire career. I certainly felt that my surgeon was trying out new ideas on me and that my successor would benefit - that’s fine - but a pool of such experiences must be better for all of us.

Love to all on Valentine’s Day!

John
Jackie

Sunday, 15th February 2009 at 8:37 am

I have no clue about a charity or research going on. It would be good to know. This site is so useful that I plan to give it to the endocrinologist and my surgeon to give to any patients that are having this problem. It has been a life saver for me. I just had a overnight stay to get my stent replaced. I think it was successful but boy did it take the wind out of my sails. Rest and relaxation is the order and I am taking that seriously. I hope all had a wonderful Valentine’s Day. I got to come home on Valentine’s so mine was really good.
Jackie

Tuesday, 17th February 2009 at 1:16 pm

Just wanted to say hi to all. A quick update. I am feeling much better. The last stent took me back a few days but I can say I am really feeling like the old me prior to the insulinoma. The last hurdle will be the drain and it may be a bit before that comes out. The journey has been worth everything. Several of you have said you do not even know all your symptoms until they are gone. Boy, that is the truth. I had no idea how bad I actually felt all the time. My best wishes to all of you. Hope you are all recovering or on your way to getting diagnosed and treated.
Stacy

Tuesday, 17th February 2009 at 1:39 pm

Jackie- I am glad to hear you are feeling better. The whole surgery things sounds scary. It is good to hear positive things about it all.

I am going to USC on the 26th of this month for yet another opinion about what is going on with me. This will be the 3rd Endocrinologist I will have seen, but I need answers and I am praying and believeing I will get better answers this time.

Have any of you experience really good weeks where it feels like your blood sugar is good? I have been having sugar readings in the low 80’s and I am used to contant 70’s-50’s even. It has been unusual, but I still feel bad sometimes. Unfortunately, today I woke up feeling bad. My sugar was good it was 82. I still felt sick to my stomach and laid down when I got up about an hour later my sugar was 76 and I was extremely dizzy and I fell on the floor. I have been doing so well and now it seems like things are trying to get weird again. It is hard to get really excited when I have a good week. It seems the low sugars and sick feeling are waiting to take over.

I have also been feeling scared to close my eyes at night because I had a seizure and a bad anxiety attack the day after the seizure. I have this weird feeling sometimes when I close my eyes. Once I am asleep I have been sleeping very hard. This is all scary and I thought I’d post about it in hopes that someone can relate. It is so hard to share what I feel with friends and family because they do not understand this condition. Hope all of you are well. Thank you for the support and for taking your time to post-It really helps
Peggy

Tuesday, 17th February 2009 at 5:50 pm

Stacy,

Yes, closing your eyes at night can be very scary after having had a seizure! Also, if my sugar was low at all before I fell asleep, I would have anxiety sometimes, weird thoughts, trippy dreams, only I wasn’t asleep! You can have all sorts of different symptoms. I remember one night, I thought for sure I had God all figured out, and could completely understand him! A few times I actually felt like I was floating above my body. Another time I felt I could ‘bounce’ off the floor and sort of fly…so don’t think that any of your feelings are abnormal, if your sugar is low. Unfortunately your friends and family are probably not ever going to be able to understand the condition, or how deeply it effects you. God understands, and He has led you here, just as he is working all things together for His purposes. I will pray for your appointment on the 26th. Keep believing.

Heidi,
The wait is hard, but trust the timing will be perfect for Mike.

Jackie, I celebrated my 1 year anniversary being ‘normal’ an February 14th! Good idea to show the sight to your doctor!

John,
It’s my dream to get the word out about this crazy disease!
If anyone wants to throw a party, I’ll offer my house in southern CA. Maybe have my daughter write a story…
Jackie

Tuesday, 17th February 2009 at 6:13 pm

Stacy, I would have weeks when nothing happened. I don’t think I ate that differently but for some reason my sugar did not bottom out and I felt ok. Then one day, boom. I was a wreck. I think as time goes on the symptoms do get worse and more frequent. I remember once thinking that I felt like if I layed down I would have a seizure. I could almost feel the edges of it. I never did have one but it was so scary. You will be in my prayers for your appointment on the 26th. Don’t give up until you get your answers.
pamela

Tuesday, 17th February 2009 at 8:43 pm

hello everyone!
stacy
there was never any rhyme or reason why my sugar would be better some days even weeks at a time!!! i always knew stress made it drop faster than anything, which in turn, i think the stress of having a hypo attack gave me really bad anxiety. I know of one seizer i had for sure, and hundreds of times as others described, felt as though i were on the brink or edge of having one!!! My menstrual cycle was also always a bad time for my sugars. and i could under no circumstances ever drink alcohol! That would be a disaster waiting to happen! Being that a doctor convinced me that it was my fault and my diet to be the cause of this horrible disease for 5 years… i did a-lot of experimenting with food and trying to figure out what to eat and how kept my sugars up… when finally i just gave up and ate everything and anything, including a dr. pepper to wash down my meal! I believe this disease definitly progresses with time. The bigger and longer you have had the tumor, the more it affect you and the more food and carbs and sugar it takes!! As John and peggy were saying, and many others of you, we truly do need to raise awareness, and do our part in spreading the word! Last summer i mentioned a party and helping any one with plane costs to come! I too. .would love to still offer my hose as well, or even help with a party at Peggys! That is so nice of you Peggy!!! We have not been to San Monica (where my husband family is) in over a year, but still hoping to go soon! You will be the first friend i will be contacting! I have always wanted to meet and talk to someone who has shared this same experience! So far and few we all are!
Also, im not sure if any of you are on facebook. im not usually into all that kinda stuff but recently got on there and it is a great way to have a cause or belief and raise awareness!!!!
Im really bad on the computer, and have only a few photographs on there, but as soon as i figure out the whole facebook thing i want to put insulinoma on my facebook home page, and talk about it more! If any of you decide to go on facebook, invite me (pamela thompson moayedi) to be your friend and we can get our cause on there and raise awareness! So many people are on it!!
Jackie,
it makes me so happy to hear you are doing well!! The more days that pass the better you will feel! God bless to you all!!!!
Pamela
Stacy

Tuesday, 17th February 2009 at 8:50 pm

Peggy and Jackie- Thank you so much for sharing your own experiences. I often feel so alone and this site does it fact offer so much support. Thank you for your prayers.
pamela

Wednesday, 18th February 2009 at 8:25 am

Angie,
It is so nice to have a face to the name!!! Glad to see you on facebook!! You are so pretty, and your sons are so handsome! what a beautiful family! I love the picture of you with the hat!! Do you know how we would start our own cause??? see you here.. and on facebook!
xoxox pamela
Angie

Wednesday, 18th February 2009 at 9:18 am

Pamela

Ha !! You did make me laugh! Perhaps we should put our scars on!!!
Thanks for the compliments - they are only the good photos! I hate photos of me as I always have that double chin or my eyes are always shut!!! You look very good yourself anyway! and the girls are really gorgeous!!

We all should get a map together and plot ourselves!! We are coming to Orlando next easter 2010 but I would imagine its miles and miles away from you. You never know tho!! Today Facebook, tomorrow the world!!!!!

AngieXX
Janet

Wednesday, 18th February 2009 at 10:56 am

Hi All!
I am on facebook if you want to put a face to my name. I am Janet Bennett if you want to add me. I have requested Angie and Pamela to add me to their list of friends, Have not had the best of weeks , but keep struggling on like everyone esle on here! Love nd prayers to all.
Love Janet xx
Jackie

Wednesday, 18th February 2009 at 11:38 am

I have never been involved with facebook or any of the other sites. I will see what I can do to get on and find everyone. I am so bored at home so this will be fun. It is such a popular site that I can see it as a great venue to get the word out about this disease. I found this site when googling the disease and it was a life saver for me. All of you have made such a difference and I would love to meet all of you.
Angie

Thursday, 19th February 2009 at 9:32 am

Jackie and All!

Look for me too, Im a little new to facebook ! Getting to grips with it tho!! Its great to put faces and lives with the people on here.
Janet found me so i must be easy to find - “Angie Phillips” or if you find Janet you can get mutual friends.

Its somewhere else for people to find us!

Angie
Jackie

Thursday, 19th February 2009 at 2:29 pm

I am horrible with facebook. I can’t find any of you. See if you can find me. Jackie Gray, Grapevine, TX. Looks like I need to work on this a bit more.
Angie

Friday, 20th February 2009 at 6:42 am

Jackie
Cant find you easily, tried Grapevine TX and gave me no matches… look me up under my email “angieanco@talktalk.net”

It mystifies me too!!! especially searching for someone with no picture and no clue other than their name amongst 400 people!!!

Angie
Angie

Friday, 20th February 2009 at 6:58 am

Ive just done a search on facebook for insulinoma.
Look up “Insulinoma - rare cancer”

There are five members and me now!!

It will help find each other!

Angie
Kim

Friday, 20th February 2009 at 8:38 am

Hi Angie,

Thanks for the link to the insulinoma facebook page. I have seen this woman’s blog but it is not well known apparently.

It bothers me that she has put the words rare cancer with insulinoma since very few insulinomas are cancerous from what I understand. I just think it is important to be accurate about things like this.

You resident Stick-in-the-Mud,

Kim
Angie

Friday, 20th February 2009 at 9:32 am

Kim

I totally agree - at the end of the day insulinoma is a tumor not a cancer as far as we are concerned and they only can turn cancerous. Really i thought the site may benefit from us especially as I followed the other link and there was a paragraph about insulinoma and that was it!

We are the Best !!!! Ha Ha and the friendliest!!!

Angie
Kim

Friday, 20th February 2009 at 10:00 am

Angie,

Here, here!!!! (Isn’t that what you all say in the UK?)

I’m surprised especially because she’s a lawyer and I thought they were sticklers for facts (as opposed to plain old sticks-in-the-mud like me!)!
Janet

Friday, 20th February 2009 at 10:12 am

Hi All,
Agree with your sentiments, about the use of the word cancer. We certainly are the best on here!
Love to all.

Janet xx
John

Friday, 20th February 2009 at 10:53 am

I have really valued all the comment, support, exchange of ideas, the shared experiences and genuine friendships and sympathies on this forum over the last few months - but recently it’s all about Facebook with its misinformation, shallowness and chatty silliness! Let’s keep this real and correct and serious.

Not everyone loves Facebook; not everyone wishes to take part in its superficial drivel.

Our shared experience of insulinoma is far more important and valuable than that. It deserves better! Had I read all this Facebook stuff when I first located this forum I’d have run a mile and avoided it thereafter. Thankfully, the discussion at that time, and since, was fascinating, deep, personal, mutually informative and meaningful. That is what’s needed - and so brilliant. Keep it so!

Leave the twitter to the teenagers, please.
My warmest good wishes to all.

John
Angie

Friday, 20th February 2009 at 12:09 pm

John

I hardly call our comments in the last two days “shallow”.
We were originally discussing how to get more information “out there” and Facebook is a great forum for many serious subjects. So a few of us have been interested to put names to faces and I cant see why we should be criticized.

This forum is still a very informative and personal place but it can be light hearted at times too.

I have been on here from the very very beginning and have read every single comment, we have had a few laughs and many tears, please do not judge on a few light hearted comments over a few hours.

Facebook can not replace this forum for any of us but there are certainly people on it that are looking for information and if we can help then so be it.

Regards Angie
John

Friday, 20th February 2009 at 12:26 pm

Point taken, Angie - and apologies if I offended anyone! It was just that a whole series of emails came to my inbox, all of them brief and only relating to Facebook which is a place that older sufferers do not inhabit or wish to understand.

I was not criticising anyone in particular, merely saying that our condition is more important and more profound than Facebook - and that Facebook might be a turn-off to many a new visitor. Information and experience need a serious forum - with a few laughs along the way, naturally!

Also, speaking as a nearly 60-year-old, I don’t think everyone wants to have their face up there either. A sort of personal anonymity is a healthy thing. By all means go down the Facebook path, exploit it and use it - but don’t expect all to love it with you.

Good luck to all - and good health.

John
Heidi

Friday, 20th February 2009 at 1:11 pm

Hi John

I echo your sentiments about Facebook, which I consider frivolous and lacking in real content. Maybe i am also too old (age 49) to feel comfortable in that format. However, the one thing that it may do is to direct people who need more information to places like this one, which has serious conversations about this rare, but challenging, health problem.

The reality is that Insulinoma is a relatively rare condition as noted on the original text of this blog and by all the doctors we have encountered (approximately 1/250,000 pop). The truth about rarity is that we are not going to get it researched or much public attention as it is not life-threatening to the larger population, or cost effective for anyone to do so. There are no other effective treatments than finding the damn tumour and getting it cut out. At least it occurs frequently enough that it is diagnosable, despite the challenges it presents to the ordinary family doctor in getting their patients to the right resources. Some of you have had harder trips to diagnosis than others, but it seems that we all have been able to persevere long enough to get to the right result. It has also been very interesting to see the similarities and differences around the world!

When I read this blog, I see hope in the knowledge that my husband’s illness is just like yours, and I can extrapolate that his recovery will also be similar as well. That is so comforting right now as we wait for his surgery date.

I am very grateful to have found this blog, since it has given me both hope and knowledge that, although Mike and I felt so alone in our struggles to find solutions in our small community, we are not alone in the world. As I searched the internet to find information about this illness, this was the only place I got personal information and ideas. Other sites and citations were about dogs, ferrets or just basic blurbs describing the medical definition without any information on how it is to go through this process. By sharing our knowledge and experiences with each other, we have all benefited from our participation in this remarkable situation. I don’t think Facebook would give us that level of detail but for those who feel a need to have individual contact with each other, great, use Facebook and enjoy! Otherwise, let’s definitely keep this page going, for ourselves and to help those who follow us into this strange club.

PS, thanks to those of you who are Insulinoma graduates and are still participating in the conversations. It has been nice to hear how everyone is doing over the long term as well as the short.

Heidi
pamela

Friday, 20th February 2009 at 2:45 pm

hello all
Angie i could not agree with you more!! Although i am not a silly teenager, but a 36 year old grown woman with two children… i love to know who i have been sharing my experiences with for the past year (i am not insecure…) and i feel if facebook has got the attention it has, why not put the word out there more, and make sure while doing it, people are informed correctly! Facebook could not possibly take away from this forum or the the personal experiences we have all shared. I see no harm in meeting each other, and sharing our family and lives on facebook.. and still writing and helping newcomers and our friends with our knowledge and experiences on this forum!
And like Heidi said Facebook is possibly a good way to direct people who need more information to our forum! It can’t possibly hurt anything, and well lets face it, if someone is narrow minded, or close-minded they do not have to participate in such things!
Till next time,
Pamela
Janet

Friday, 20th February 2009 at 3:34 pm

Hi everyone,
Insulinoma is a serious condition as all of us on here know from experience, but maybe there is a fair chunk of childishness left in me, but sometimes I have need to be not so serious, just to stay sane. In fact there is a time and place for both. I am on facebook but am 53, yet on the other hand find this site so wonderful to be able to share our experiences, joys and sorrows with others who know just what symptons we have had to endure. We all have more than one approach to life and as well as the serious discussions it is lovely too to put faces to some of those on here. In fact it is wonderful to meet everyone, some just anonymous that post on here and others that want to share our physical images. We have all been through pretty emotive stuff so it stands to sense that we vary on how we wish to share it. Thanks to all on here and facebook for sharing their thoughts. I have lived with insulinoma on and off since my first one at 17. I thought I would never have the opportunity of meeting or discussing it with any esle who had actually experienced it so I feel very blessed to have hte opportunity. So whether on face book , on here , or both , ren’t we blessed to have found ech other. Praise the Lord!

Janet xx
Kim

Friday, 20th February 2009 at 3:36 pm

If I may, I think the point here is that perhaps more “lighthearted” discussions are best left to Facebook etc. and that on this blog we try to stay to the point so that people who are seeking information, reassurance and a community devoted to insulinomiacs will not have to sift through entries for relevant material. I think this is a valed point though I also see a place in this world for Facebook. Now we know how to find each other there.
John

Saturday, 21st February 2009 at 5:37 am

I realise that my adverse reaction to the involvement of Facebook in the insulinoma forum has caused quite a reaction, both for and against.

Over a whole week there has been scarcely any real insulinoma news here, no new ideas or views, no reports either from sufferers or graduates (I love that expression - so right!), from new people or long-time writers - and that just might signal to us that some people, new and old, find the very mention of Facebook inappropriate and confusing, off-putting and trivialising.

I would criticise no-one for using Facebook for whatever reasons they like. But I hope to read important stuff here over the next weeks - in the proper spirit of the forum which we have all found so helpful and informative. There is certainly no lack of personal contact here. We all found one another through this one great and informative web-site and can best spread the word within that web-site in a focused, sensitive and serious way.

Best wishes and good health from this insulinomiac who, just two days ago and only 6 weeks after surgery, got more or less signed off by his surgeon, with the promise of an ultrasound scan in a month to check that the abscess is gone, and a CT scan in 6 months to check I am still all clear - a good result, I feel. The surgeon himself is mighty pleased with himself, and who am I to deny him that satisfaction?

John
Peggy

Saturday, 21st February 2009 at 2:05 pm

Peggy,

All I can say is, I love you guys! All of you. After reading the posts this last week, every feeling and thought that I had, has been expressed!
I am so excited to see some of you on facebook! I can’t wait until my 17 yr old daughter wakes up to show me how to use it! :) (I haven’t a clue how it works) Since I don’t have my own page, I’m assuming I will have to search for you through hers, if that is possible. This is the first time that people have been putting there last names on this blog..I guess that is ok to do? I don’t want to be paranoid, I just don’t understand the risks well enough.

Pam,
Come and visit your in laws! I’ll bet they really miss you. :) It would be great to meet in person. I feel honored that I would be the first ‘friend’ that you look up when you come! I hope you can make it soon, spring beak is coming… but anytime would be a good time. You could see my home and tell me if you think we could make it work for a party. Thank you for offering yours, as well as helping with travel expenses. That would be the only thing holding me back, now that I have confidence in my ability to travel.

I’m sure we could raise awareness through facebook, not sure how, but I’ll bet my daughter does. She recently moved out of state, but isn’t employed yet…being a jounalist, I’ll bet she could use a project! If we threw a party here, she does have contacts that might help get the news out…
any ideas or opinions? In the mean time, I’ll have her make me a facebook page!

“See” you all soon,
Peggy
Heidi

Monday, 23rd February 2009 at 1:29 pm

Hi everyone,

We got a call from Mike’s surgeon’s office today, and there is the good news and the bad news.

Good - the surgery will definitely be in April; once surgeon’s office gets his April operating room dates from the hospital Mike goes on the calendar.

Bad - the surgeon has definitely ruled out laparoscopic surgery due to location of tumours. Mike’s anxiety has gone way up this am and I have been reminding him that open surgery is quite normal for insulinomas, and his surgeon told him 3-5 days in hospital, baring complications. Although reading all your experiences here, I hope that is not too optimistic (I am definitely not sharing that thought with Mike though). Dr. Scudamore told him that the most common complication is leakage which seems to have cropped up in a lot of your comments here.

Well, I must run out and start shovelling snow. We got 5 cm (2 in) last night with more coming tonight. it is -9C (15F) right now, and supposed to go down to -25C (-11F) by Wednesday night. Oh, how I long for spring thaw and the chance to work off stress in my garden. I don’t expect to see defrosted ground until the beginning of May though.

Bye for now!

Heidi
Jackie

Monday, 23rd February 2009 at 2:28 pm

Heidi, I can so identify with your husband. I was terrified to find that they could not do a laparascope. I guess I was in a kind of denial and thought this could not be that big a deal. Now that I am almost 5 weeks past the surgery I can say it is well worth it. They were able to see the whole pancreas and make sure there were no other issues there. I also had them look at my gall bladder and it turned out to be badly diseased so they removed that. Unfortunately the leaking is a problem and that is what I am facing now. That in itself is not that bad. You just have to deal with the external drain, keeping it emptied and I have a small dressing I have to change each day. My surgeon says that they heal on their own but it can take weeks. My doctor had a gastro guy place a stent to help the healing process but so far the stent won’t go in and stay in place. It seems I am one of very few that has a pancreatic duct with a branch on it. Go figure. I see the gastro guy tomorrow to see what he suggests. The great thing is my sugars are normal and I am beginning to get my life back. Even with the big incision, I felt better than I ever felt with the tumor.

John, I went on facebook and opened an account and I have to agree I really like our blog here better. It was good to see faces to people but somehow it is not the same. I think it is because this site has meant so much to me that somehow facebook just pales in comparison. It is great to see kids, grandkids, and hobbies but this site gave me hope, let me know I was not alone and that if you could do it, I could too. We should make sure that each of our physicians have this website and that they give it out to all new patients. That way if they see value they can join the discussions.

Hope all of you are having a great week. For those of you that did have leaking issues, what was the sign that it was resolving itself. Did it decrease quickly or gradually over time. I know my doctors will have some idea for me tomorrow but was just wondering what happened with any of you. Take care everyone.
Laura

Monday, 23rd February 2009 at 2:45 pm

hello all, I had one comment, if you read the above posts, you will see many problems and complications cause by drains. My surgeon does not believe in them. I did not have one and I had no problems at all. He feels they cause more problems than they solve. It might be worth it to have a conversation with your surgeon before surgery as to why he thinks he needs to have drains.

Laura
Jon Mikel Iñarritu

Monday, 23rd February 2009 at 5:20 pm

Of course this site is better than Facebook… facebook is just a social network, not a source of information.

Laura: There are specific indications for drains, this is well studied with numerous clinical trials, most of them favors drains under certain conditions. In this type of surgery the first indication would be: a difficult dissection of the tumor (insulinoma). Heidi is right, leakage is the most common complication, and in order to diagnose and treat early and properly the drain will tell you. So, if the surgeon thinks it may be a leakage, I bet a drain will be placed and if nothing drains, it will be removed in the third post-op day.
Peggy

Monday, 23rd February 2009 at 9:01 pm

Jon,

Thank you for commenting! I’m sure everyone appreciates hearing from your expertise.
I want to thank you again for being responsible for so many of us finding our answers to insulinoma through this site. I do not believe that I would be healed from my insulinoma today without the information provided through Unbounded Medicine or without all the support and encouragement I received from all the awesome contributors to this blog.
I would not think that there could be another site out there that would have done that for me.
It has done my heart good to be able to see pictures through facebook of some of the wonderful people from all over that have been there for me through it all.
Peggy
Stacy

Monday, 23rd February 2009 at 9:55 pm

Hello everyone- just wanted to let you all know I will be seeing an Endocrinologist at USC this coming Thursday for a 3rd opinion. I feel like I have to start all over explaining my issues, but I am praying for a better outcome. I will be seeing Dr. Peter Singer he is supposed to be very good.

My sugar has been crazy this week because I have walking pneumonia. I am doing all in my power to feel good enough to go Thursday. I have been waiting for this appointment for a long time now.

Thank you all for your posts on Insulinoma I have really learned alot and I have alot of questions to ask the doctor on Thursday now.
pamela

Tuesday, 24th February 2009 at 12:40 am

Stacy,
Your third endo? Well perhaps as is said… threes a charm!
If you have not already done so, make sure you have a copy of all your medical records, scans, blood work, tests, blood sugar readings, and if not to much trouble another seperate folder with this insulinoma blogs from the forum printed out…. it is long, but at least you know it is in the doctors hands. And i know you said you had a-lot of questions… i would make sure you had them all written down, just so you do not forget any of them. I feel very hopeful and strong that you will get the long waited answers you need to get so that you can move forward and be on the road to a healthy life!!
prayers and best wishes to you!
Dr Jon Mikel,
Thank you! You are greatly appreciated. Without this forum and the encouragement and support and guidance i received almost a year ago in march, i do not know what my fate would have been. God bless you and all the friends i have bonded with!
Pamela
Janet

Tuesday, 24th February 2009 at 7:48 am

Stacy,
I would just like to echo the thoughts of others on here and wish you all the best on Thursday when you see the endo. As Pamela said, make sure you have all your questions written down. It is so easy when you sit in front of these doctors it is easy for all those important details to just disapper from your head. My thoughts and prayers will be with you on Thursday and I so hope that it will help to move you closer to getting your life back. This illness is such a frustrating one and we all know so well how these symptons reek havoc in your life. Take care,
Love Janet
Jackie

Tuesday, 24th February 2009 at 9:38 am

Stacy, I too have you in my thoughts and prayers that this physician will have all the answers and you can start preparing for getting your life back. Pamela’s advice is awesome and I totally agree. We will anxiously await word from you. Hang in there.
Laura

Tuesday, 24th February 2009 at 12:48 pm

I understand that drains have “always” been done. What I am saying is that my doctor said that is the old way to do it and that he has found that they are not necessary. He said the leaking fluid causes less problems than the drains do. I had the full incision with no drains and had no complications at all.
Peggy

Tuesday, 24th February 2009 at 1:51 pm

Stacy,

You know my prayers are with you.
Love peggy
John

Tuesday, 24th February 2009 at 4:31 pm

This discussion about drains is intriguing! I had a drain in for about a week after initial surgery, a thick pipe which deposited unpleasant pinkish-brown goo - but only a little each day. When it was taken out, in time for me to go home, I did not look, but my wife did and was astonished at how long it was, how deep it went and how much stuff came out with it!

Then, ten days later, I had to have another, much thinner drain to get the last of the abscess out, this one in there for over a week. It needed daily aspiration, sucking stuff out with a syringe before flushing with saline, a real ‘business’ which I got wrong too often, either when undoing the taps, or while squirting the solution in, remembering to wipe everything with a sterile swab, I succeeded in breaking the connector and having to go to casualty to get a new one which was enormous, a three-way tap effort - horrible! Eventually it was all taken out - and that hurt!

As I wrote once before, these drains allow you to see stuff you shouldn’t be able to see… but they do allow stuff to get out. Better out than in!!!!

Let the surgeon decide what’s best for you. I don’t recommend arguing with these guys…

Afterwards, it all fades into a mish-mash anyway. I can genuinely say that, six weeks on, I am back to work - and thrilled to be living a normal life.

My warm good wishes to all - especially those about to seek help and those about to go into sugery…
John
Heidi

Tuesday, 24th February 2009 at 6:06 pm

Wow, sometimes things just start happening when you think you don’t have to think about it for weeks or months!

Mike’s surgeon called this morning to ask if he could be in Vancouver on March 19th at 5:45 am as they had a slot come open and wanted to get him in sooner if possible. Of course, the answer is YES!

That week is our school’s spring break, so our son wants to come with us vs. sitting at home alone and wondering what is going on (and I think it will alleviate his stress if he is there too). I have been scurrying around to find pet care for the cats and dog, and making flight arrangements today. Thank heavens for credit cards when you need to book everything online and in a rush.

John, it is just wonderful to hear that you are back to work at the 6 week mark and feeling normal - abcess, drains and all.

Let’s hear it for all the successful graduations from this difficult illness!

Heidi
Jackie

Wednesday, 25th February 2009 at 1:53 pm

I am being referred to a specialist in Dallas to place another stent. I really appreciate the referral from my current doctor so that we can get another set of eyes on this one. The CV for this physician is impressive and I was really encouraged. I am waiting to get a call back to set up the initial appointment and the waiting is awful. To them I am a new patient, to me I am 5 weeks into a situation that I need a resolution soon. Waiting has never been a strong suit for me.

Heidi that is great great news that Mike is going in sooner for his operation. My best wishes for both of you and you will be in my prayers.
Janet

Wednesday, 25th February 2009 at 2:40 pm

Hello All,
Jackie!,
Glad that you are feeling encorouged and I really hope you get a call back real soon as it certainly sounds like you need this sorting as quickly as poss.
Heidi,
That such good news that Mike is getting his surgery is earlier than was scheduled. My thoughts and prayer are with him and nd all your family for the weeks ahead.
Love to all,

Janet xx
Stacy

Wednesday, 25th February 2009 at 9:16 pm

Hello everyone- I am going to USC for my 3rd opinion tomorrow morning. I am a little nervous. I am trying to think of everything to ask. I don’t want to forget anything. I am definitely going to ask about the possibility of an insulinoma if blood results don’t show it after a fasting blood sugar test. I am also going to review the finding of UCLA endoscopic ultra sound of a growth on my pancreas. I also want to ask that he tell me what tests I can still take to find out if I have an insulinoma or not.

Any suggestions for what I should ask since so many of you have dealt with this for so long?
Kim

Thursday, 26th February 2009 at 12:01 am

I had my insulinoma removed feb 2 2006 doing great but I am now type 2 diabetic- no prob with that but was wondering if anyone else has become diabetic?
Jon Mikel Iñarritu

Thursday, 26th February 2009 at 12:36 am

John - Exactly, drains can be our best source of information about what’s going on in there. As I said before, there are specific indications for drains. You already told us that you had an abscess and it was drained with a drain (LOL).

Most of the times, a drain will work to quantify and see physical characteristics of the collected fluids and if something went wrong (i.e. a pancreatic fistula) we can control its output which is the first step in fistula treatment (to control its output).

Best wishes to all of you, specially those facing surgery.
Nicolai

Thursday, 26th February 2009 at 1:35 am

Kim,

I haven’t been through surgery yet, but the question about diabetes is quite important I think. My insulinoma symptoms are relatively mild, and I really don’t want to go through surgery just to end up with diabetes (and possibly without a spleen as well).

One surgeon said that even if they remove part of the pancreas, there is no risk of diabetes. Another surgeon suggested that only with enucleation (removing only the tumor and nothing else) will there be no (or very little) chance of becomming diabetic.

So I’d really appreciate if someone has more feedback on this issue.

Good luck everyone,
Nicolai
John

Thursday, 26th February 2009 at 2:52 am

I just wrote a reassuring note addressed to Kim and Nicolai - detailing my experience with post-op diabetes - but it disappeared, both the writing and the diabetes!

In a few words, what I said was that it probably depends on how much pancreas gets removed and how quickly your pancreas switches back on post-op.

In my case I was lucky…

Good luck to all - the outcome is infinitely better than the lead-up!

John
Kim

Thursday, 26th February 2009 at 5:51 am

This is the other Kim. Not sure what you meant John by writing a note to Kim & Nicolai … AFter my surgery my blood sugar was quite high but eventually (a week or so) it settled down.

Stacy - thinking of you today and I really hope that you get some answers.

Good luck to Jackie and

Great news Heidi and Mark!
John

Thursday, 26th February 2009 at 7:11 am

I was responding to those queries from Kim 26 Feb 09 and Nicolai same date about diabetes as a follow-up to insulinoma surgery - there appears to be a time delay on the forum with postings getting held up…

I wish all of you/us well
John
Kim B

Thursday, 26th February 2009 at 10:46 pm

Sorry but I think I confused some people , So I name myself “Kim B” I had a distal pancreatectomy to remove my insulinoma on feb 2 2006 whitch left me type 2 diabetic. At the time the doc’s never said anything about the risk. It was only after the surgury that they said it should “fix” itself,but it didn’t. In my research about this I have found that the risk of geting diabetes is small. So I was just curious if anyone out there has—Cheers-Kim B
pamela

Friday, 27th February 2009 at 9:25 am

Heidi
i am so glad that you all got the great news of the surgery date, and are making all the preparations! Best wishes to you both!
Jackie
i am wondering if you heard from your new specialist, and they can soon help you, it sounds like this stubborn stent is the only thing holding you back from a full recovery… and once it is taken care of you will be on the road to feeling close to perfect!!
Nicolai,
My tumor was in the head of my pancreas, and was told by my surgeon that there is always a risk of becoming diabetic after surgery, but not likely in my situation. They removed a very small portion of my pancreas and nothing else. Thankfully i made a full recovery. I do not know how big your tumor is right now, but it seems to me as it gets bigger it not only causes more problems and symptoms, but there may be more things involved to remove it.
Stacy,
I am anxious to here what you heard at your appointment at UCS yesterday……
Good luck everyone!
Pamela
Peggy

Friday, 27th February 2009 at 12:20 pm

Stacy,

I hope you are feeling better. I had walking pneumonia, I know how it can really wipe you out!

I’m anxious to hear what Dr. Singer had to say…
Jackie

Friday, 27th February 2009 at 1:24 pm

Nicolai, I had high sugars for about 3-4 days post surgery and since then they have been fine. My surgeon threatened the nurses that they were not to give me insulin unless speaking to her first and I would not get insulin even then. I had to laugh. Prior to the start of the insulinoma symptoms my fasting sugars had started to climb. My physician was watching it to see if I was going to develop diabetes. I was overweight and was not exercising or eating right. How surprising that my fasting sugars went from a 110 to a 41 after the insulinoma developed.

My stent placement is scheduled for Thursday 3/5 and it can’t some soon enough. I told them if there is a cancellation to please move me up if possible. I am willing to be NPO until then just in case. Just kidding……. Did any of you have a bout of depression after. I am in quite a low funk right now. I cry easily and don’t feel like eating so I know I am depressed. Being a nurse I know I need to walk, get out of the house, eat anyway, and all that stuff. But knowing and doing is a yard away from itself. My surgeon suggests I write out the whole experience with procedures, events, feelings, etc. She thinks getting it on paper will help me get beyond this, that I may be suffering a bit of post traumatic stress syndrome. Thanks so much…..
Nicolai

Friday, 27th February 2009 at 4:15 pm

Hi all,

Thanks for the feedback regarding possible diabetes after surgery. I guess there will always be a risk, but that this is much greater if some of the pancreas needs to be removed.

In any case, I now have a CD with pictures from my MRI scan, which finally provided some detailed information about my insulinoma. It was found during an endoscopic ultrasound, but both a CT scan and an Octreo scan showed no evidence of it. But with the CD I now have something to show surgeons, who have experience with these types of operations – in particular laparoscopic operations (no one performs laparosocpic operations in my little country of Denmark). Unfortunately, my prospective foreign surgeon is away for the next couple of weeks.

So given that it will be a while before I get some more information and can start planning my surgery, I’ve decided to take my fiancée on a holiday – and we’ve decided on Florida. And I’ll be bringing snacks with plenty of carbohydrates :-)

Best of luck everyone,
Nicolai
Stacy

Saturday, 28th February 2009 at 11:47 am

Hi everyone- thank you for your thoughts and prayers for my appt to USC.

So, my appointment was bitter-sweet. He is a GREAT doctor and the most thorough doctor I have seen thus far. He said I have an extreme case of reactive hypoglycemia and after looking over my blood work does not think I have an insulinoma. He said there is a 7 x 7 growth on my pancreas and he drew a picture of its size, the size of a green pea. My husband and I had so many questions. There is a growth, and all of the symptoms and signs but no insulinoma? So, my husband asked if I will have to live my life with these crazy highs and lows and many trips to the hospital when I become incoherent when my sugar drops. We really want answers. Of course no one wants an insulinoma I am just thinking that once you have a diagnosis and know that you can return to your normal self there is hope and relief somewhere in sight.

He is going to look over my records for a week since he doesn’t know me and we will figure out what else it could be. He was at a loss for what else it could be besides reactive hypoglycemia and I already knew that. He said the blood work would show if there was an insulinoma and the growth is just a little nodule that is doing nothing to my pancreas. So, as I went to be shaky, sick and low and woke up this morning ok and then sick and low after an hour- I am kind of sad-I just want a doctor to tell me they can help me get well. He just told me I may have to live with a really bad case of low blood sugar and to eat every two hours and eat no foods made with white flour. I told him about my weight gain and he said I will continue to gain weight due to my constant need for food to maintain.

He asked if I plan to have more kids and I told him I do after I get to the bottom of this situation. He told me to go ahead and get pregnant and I will be fine. Knowing how sick I get on almost a daily basis I am going to wait for better answers.
John

Saturday, 28th February 2009 at 12:19 pm

Hi, Stacy.

I really feel for you after this inconclusive and really distressing diagnosis. Let me say that what I dreaded most after all the long-awaited consultations and scans was a non verdict! I had three scans in quick succession, MRI, octreotide and CT, and I learnt only afterwards that the surgeon and endocrinologist were hoping for a two-way concordance, two out of the three showing the insulinoma.
As it turned out, the MRI was first reported clear both to my doctor and to me, the octreo showed nothing at all and the CT was only fairly conclusive - then another endocrinologist re-read the MRI and there was the insulinoma, shadowy, small but definitely there. Bingo! 2 out of 3!
So ask again - and ask again and again. You should not have to merely live with these debilitating episodes and all the worry about the future. Get a second opinion - a second and third reading of the scans. In the UK we are allowed to ask for a second opinion - are you?
The weight gain is a serious concern, too. It’s inevitable with all those snacks and midnight food intakes. I put on so much weight, all around my midriff which, as a basically skinny guy, I hated Since the operation it’s all gone. All of it!
I am a coeliac - diagnosed in 2004 - so I am well used to a wheat-free, gluten-free diet - but what’s that issue with you and white flour? That’s new to me. I know of know correlation of insulinoma and coeliac or wheat intolerance. Anyone else been told that?
I have completed my first week back at work - unscathed and strong.

best wishes to Stacy and all of us

John
Heidi

Saturday, 28th February 2009 at 6:15 pm

Stacy

When Mike was first taken to the emergency room after collapsing, the endo who came in to see him told us that he had insulinoma based on the blood tests alone, however, what followed were 2 CTs an MRI, which showed absolutely nothing, then the calcium arteriogram which showed a high insulin level coming from the head of the pancreas, and most recently the endoscopic ultrasound which eventually detected 2 very small tumours on the head of the pancreas.

So my question is, if there is a tumour that has been found, and you have all these symptoms, what is the blood test not showing? We were told if the C Peptide and insulin were high while the glucose was low, that was enough to prove the existence of an insulinoma, even if it was so small that it was not visible on standard scanning methods.

Coincidentally, I have been a reactive hypoglycemic for about 30 years and have learned to regulate myself with eating a healthy diet and recognizing the symptoms early. However, I have absolutely never been even remotely as sick as Mike gets and I can tell that these are two very different problems. At my worst, I get very grumpy and short tempered, or get weepy and very sad. Conversely, when I eat too much refined sugar such as ice cream, or donuts, it is like I get drunk, particularly if I haven’t had something complex recently to balance the quick metabolizing of the high sugar. White sugar and white flour are not good for me, as I metabolize them too quickly, which then brings on the hypo. I find I keep well balanced following the GI diet and smaller meals more frequently keep me balanced. This regulates the high/low swings in blood sugar by having complex carbs, protein and lots and lots of veggies. It took most of my 20’s to learn to manage this problem, but it has become very natural and the only thing that really throws me off is high stress or illness. I have Mike still eating the GI diet, only he gets more food, more frequently because he needs it. The whole grains and high fibre work the best for both of us. And I sailed through pregnancy blood sugar wise. I just needed to make sure I ate frequently and healthy. I think the most obvious difference between Mike and me is that I get giddy when I eat something very sweet, where as Mike gets higher blood sugar for a short time but doesn’t seem to get the same euphoria from it. Mike has always known if I needed to eat, by how grumpy I got.

I don’t know if that helps you much at all, but I have not had a hard life managing my blood sugar, if I just stay a bit aware. It seems to me if the blood tests are not showing the right combination of highs and lows, then maybe it is not insulinoma. I certainly was not thinking hypoglycemia when faced with Mike’s symptoms as he was collapsing. He had such low energy and had been sluggish for a long time, and kept telling me he felt like he had a low grade flu. What tipped him off the scale was the fact that I tried reducing his calories, because he was gaining so much weight and that was enough to push his blood sugar too far down. It appeared to me to be a stroke because he was speaking gibberish and staggering on his feet.

Well, enough of my two cents worth! Good luck figuring it all out.

Heidi
Peggy

Saturday, 28th February 2009 at 7:12 pm

Hi Stacy,

I’m sorry you have to wait to get pregnant, but I don’t blame you for wanting a better answer, I would too!

If you haven’t already, I would ask Dr. Singer if he could say that it definitely was not an insulinoma. Did he have a surgeon, like Dr. Parekh lood at your CD as well? Did he explain the blood results to you so that you understand why he came to the conclusion that it was not an insulinoma? Hopefully he did, it is just that I have seen Dr’s that said my 72 hour fasts did not conslusively prove that I had an insulinoma. And Dr. Parekh said that if he had looked at my other CT’s and MRI’s he could probably have found my tumor there as well, even though other doctors did not see it.
Maybe it is just an extreme case of reactive hypoglycemia (I was told that too), being that you have family members with diabetes. If it is I would would want to see a nutritionist rather than a doctor to learn how to effective-ly control it. In response to John’s question, I’m sure the reccommendation to stay away from white flour was just because it turns to sugar so rapidly, rather than being a gluten problem.
I sure that Dr. Singer is a good doctor. Bottom line is if he did not or could not say that it definitely was not an insulinoma, then I would press on until I knew for sure. You don’t want to live like I did for 15 years!
Jackie

Saturday, 28th February 2009 at 7:52 pm

Stacy, just to add to what has been said, the first indication mine was probably an insulinoma was my fasting blood sugar was 41 but my insulin level was 45 which was way too high. I was producing insulin when it was not needed. From that they did a CT scan which showed a 1 cm tumor in the head of my pancreas. So I am curious what blood work they did and what it showed. Two months earlier my fasting blood sugar was 47 and my insulin was 27. So over time it was getting worse. Just sounds weird that there is a tumor and you are having the symptoms but they cannot diagnose it. Keep asking and asking until you are satisfied with the answers. I hope you find them soon.
Stacy

Sunday, 1st March 2009 at 2:17 am

Thank you all- I won’t give up until I get answers! Your comments have been so helpful and comforting. I am just really frustrated right now. Thank you so very much
Angie

Sunday, 1st March 2009 at 6:37 am

Stacy

I dont think I can add anything much to what has already been said.

One thing tho, when I had my op they still had to analyse the tumor to make sure it was the right one that was causing the high production of insulin. So if they really cant be 100% sure until then, after all the tests they did, it makes you wonder - obviously they are covering themselves all the time.

Also it is possible that the insulinoma can be in other parts of the body - this may sound wierd but that is why they can do calcium infusion tests on the whole body rather than just the liver and pancreas. They nearly did this on me by mistake.

A calcium infusion test stimulates production of insulin, they flush the arteries leading into the pancreas and liver separately and take readings which show any increase in insulin production so that it indicates where it is coming from and hopefully confirms the tumor in question is responsible. I have no idea how they do the full body!!!

I would also want to know if the growth they have found is dangerous or just a benign nodule.

As Peggy lived with hers for 15 years trying and trying to find out a solution I would echo what she says and keep pushing for more and more answers.

By the way - I had no problems with my second pregnancy and I must have had the insulinoma then. If you want another baby Id go for it when you want to especially as the doctor had no reservations. Some how the body copes quite well and I dont think anyone on here has has much trouble in fact I think most people have had less symptoms - dont take my word for it tho!!! Good luck!

Nicolai

Your diabetes query, I was warned that as the pancreas is a very delicate organ any messing about with it can be tricky and it couldnt be ruled out that i may become diabetic. However so many people seem to have part of it removed and all is ok I think its one of those warnings like the risk of having any anaesthetic! They seem to prefer managing diabetes rather than insulinoma!

Regards to all

Angie
pamela

Sunday, 1st March 2009 at 10:24 am

Stacy,
Being that there is a growth on the pancreas, and you having all the signs and symptoms i think you need to keep pushing for answers, or even get another opinion like John said. It just does not sound right. What were your c-peptide and insulin and blood glucose levels? Dont give up… i too , was told i had reactive hypoglycemia, and went to several nutritionists and dieticians… it took me 3 endocrinologists, several scans and several different doctors to read the scans in a five year span.It wasnt until i became more and more sick and and got tired of living the way i did that i began to push to get the answers i needed. For me pregnancy wasn’t so easy. With each of my two pregnancies it seemed to make my sickness worse. It became harder for me to keep my sugars up, and the fatigue was awful. At five months pregnant, i was pulled over by a police man because he had several people call in that there was a drunk woman driving all over the road. Once he pulled me over i was so confused and making no sence he called the paramedics who read my sugars to be 33. Very scary! Has your Dr. had other experiences with insulinomas?
Best of luck to you, i hope and pray you get the help and answers you need soon!
Pamela
Kim

Sunday, 1st March 2009 at 10:47 am

I might add that the proinsulin count is an important factor as well. It seems to me that the blood count is the important diagnostic (much moreso than a mass on the pancreas) because there is never a situation where one has high insulin or proinsulin AND low blood sugar unless there is an insulinoma pumping out insulin willy-nilly.

Yes, Stacy, it would be interesting to know what those numbers are.

Jeez, we have really been thru the ringer haven’t we?
Laura

Monday, 2nd March 2009 at 11:06 am

Stacy, I agree with Angie, the first time I noticed symptoms of my insulinoma was when I was nursing my second child. I blamed it on the nursing and sure enough as soon as I stopped nursing, it got better. (Turns out I got pregnant almost instantly when I stopped nursing as well!) I had no symptoms at all while I was pregnant. when my third child was born, the symptoms started again. This time I was expecting it and I blamed it on the nursing, but when I stopped nursing it did not go away that time. bottom line, I had the tumor thru at least 2 if not 3 pregnancies and I never had any symptoms when I was pregnant. My own dime store doctor thoughts about this is that women are prone to high blood sugar during pregnancy so the tumor has less of an effect because you are starting so much higher. If you want more kids, I would go for it! Just be aware that nursing is tough…

good luck!

Laura
Stacy

Monday, 2nd March 2009 at 7:19 pm

Hi everyone

Pamela and Kim- My doctor said he is currently treating a male patient with an insulinoma. It is so confusing for me because I thought based on what I have read and learned about insulinoma that is what I had. My insulin levels during my last 72 fast my insulin level was < 1.0, proinsulin was 3.0, C-peptide 0.25 Honestly I do not understand. My glucose varied because they took it every 30min to an hour. It was 56, 37,58,63,57 and they sent a reading to the lab that was 48. My endo at the time of the 72 hour fast said my sugar needed to be under 50 to get an accurate reading. He explained so much that day and told me my levels didn’t show an insulinoma. Do either of you understand these levels?

I had to call in to work today because as I was getting ready early this morning I felt sluggish. I checked my sugar and it was 60 but I knew it was dropping. My husband told be I became incoherent and it took him awhile to bring be back around.

I am so tired of this. I am going to request that Dr. Singer re-do as many tests as he can. He wants to consult with the endo that referred me to him, but I just want things done over. I cannot live like this. There was no way that I could have worked today because I did not know who or where I was. I am really down today. I have faith it just gets really hard sometimes. Thankfully I have a large and supportive family and my three year old is with them since my sugar is going up and down today. Dr. Singer will be out of the office all week, so I will call him next week to let him know what I need. I just want answers and a solution.
Jackie

Monday, 2nd March 2009 at 7:36 pm

The low insulin level would be the concern for me. But I am not a physician so can’t say anything about what it all means. But usually when your sugar is low and you are producing insulin then it is a problem. Your symptoms sound horrible and I can’t imagine what you are going through. Keep looking for answers and you are in my prayers.
Peggy

Monday, 2nd March 2009 at 11:50 pm

Stacy,

I feel for you more than you know. Having to live with low sugars is by far the hardest thing I’ve had to deal with. No one understands just how hard it is unless they have experienced what you are feeling. Thank God that you have a supportive family!
It does look as if your insulin levels (proinsulin and C-peptide) were too low to have an insulinoma. However, these tumors are not consistent…sometimes they produce insulin even when your sugar is low, and sometimes they do not. I’m curious how long your fast took, and also where it was performed. Hopefully you can have the 72 hr fast redone. (they would only re-do mine after a year!)
I know keeping the faith can be a struggle. I’d like to share with you a few things that helped me deal with doctors, etc. If you’d like to talk, maybe you can get a facebook account and I can privately message you my phone number. I wished that I knew how to do that when I was going through this! You must not be too far from me….?

Pamela,
If you come down soon, let’s see if Suzie wants to meet up!
You know, as much as I wanted to see people, when I was in my lows I was too insecure to follow through… I’m over it!
Let’s get together.
:)
Angie

Tuesday, 3rd March 2009 at 2:28 am

Stacy

I am concerned about how long your episodes last!
I dont know about anyone else but as soon as I felt “odd” I knew my sugar was dropping and I needed something to eat. Occaisionally it took me by surprise but as soon as I realised I could nt speak properly or my eye sight got worse I would eat something, anything and within a few minutes I would be recovering. Sometimes it would take a while but never any longer than an hour. I am not saying I felt great but certainly could carry on.

I only knew I had insulinoma a or something serious 10 months before my op so I lived with this condition not knowing anything was wrong for years. Just that I was so tired all the time, but with two young boys and terrible sleeping habits I thought that was my life.

You may not have insulinoma but really you dont want it either! It could be something that is easier to treat. I know that I worried when things looked that it could be something else as you hold on to the diagnosis you originally hear. As long as they find what it is and give you some answers, push again and again - dont stop even if you think they are getting annoyed with you. Its your life not theirs so really go for it!!!

Good luck!!

Angie
Janet

Tuesday, 3rd March 2009 at 7:26 am

Stacy.
I so hope you get this sorted soon. I must echo Angies’ thoughts about the length of your episodes. Like Angie, if I feel odd i have to eat immeditaley and recovery is quick, in fact I feel like a different person within minutes. Sometimes I am unaware and that is certainly more of a problem, its like denial, and obvioulsy if its in my sleep then that ha been a mojor problem. I hope that these doctors make a diagnosis for you soon, as Peggy points out , insulinoma often acts differently and nothing rus really typical that is why it is so difficult to diagnose sometimes. My thoughts and prayers remain with you.

Love Janet xx
Laura

Tuesday, 3rd March 2009 at 11:02 am

Stacy,

I have to agree with those above, I never missed a day of work due to my sugar. As soon as I ate, my sugar always came back if not instantly, definately within a half hour…. As for the 72 hour fast, your sugars were undoubtedly low, but it is my understanding that what they are looking for is sugars that keep falling. Because yours bounced up and down, that could be an indication that you have something else. Good luck to you in figuring it out!

Laura
pamela

Tuesday, 3rd March 2009 at 11:53 am

Stacy,
I cannot remember exactly the details of my 72 hour fast, but i do remember that my sugars were bouncing up and down the same way you described, it started out at like 58 and went to something like 45 and then back to something like 52…. it was one of those weird sugar days. You can never predict what was gonna happen. I was always thankful i was a stay home mom, because if i would have had to work, i would have never been able to keep a job due to how bad i felt after a really low episode. Sometimes i wouldn’t even realize it was hitting me and someone would have to almost force me to drink orange juice or dr. pepper, because for some reason i would deny that i was having low blood sugar. For me it took a-lot of carb, and sugar to keep my sugar up all day. There would be some days where i would drink up to 5 dr.peppers! no fun! I am so frustrated for you! Like Angie says… dont stop or give up until you get this figured out!
Peggy,
I hear you on being insecure in the past… everything was scary to do or go anywhere because i constantly worried about my sugar! I would absolutely love to see you and Suzie! We will plan that!
Also to Stacy, If you need to ever talk, you can have my number as well.
pamela

Wednesday, 4th March 2009 at 9:07 am

Stacy,
i was reading on a website about hypoglycemia and causes….. The website was
http://www.dreddyclinic.com and then type in hypoglycemia and go under causes…. One of the paragraphs under causes says how an insulinoma is a beta cell tumor and there are other types of tumors called Non-Beta-Cell tumors. The definition of this i will copy down and is as follows:
Non beta-cell tumors:
Hypoglycemia may result from tumors other than a beta cell tumor of the pancreas. Some tumors don’t cause an overproduction of insulin, but cause excessive utilization of glucose by the tumor or they result in an over production of insulin LIKE SUBSTANCES. Elevated levels of these substances cause hypoglycemia.
Reading this i am trying to understand it, and wondering if any of it can be helpful in some way???? Maybe it is why your tests show your insulin levels to be low… and it is an overproduction of another type of insulin like substance that is causing you to have the hypoglycemia. And could that 7×7 growth that you said your doctor said you had on your pancreas be a non beta cell tumor? Anyone correct me or give me your feedback… i have no medical knowledge, and i know some of you have teaching and nursing degrees. Maybe if you can read a little more on that website it could be helpful. I just wanted to read on why your sugars and insulin levels were low. I remember when we did the blood work to test my insulin levels in my body, the endocrinologist said the insulin levels in my body were off the charts! Hope you can get this figured out soon. What is your next step… Appointment??
Pamela
Jackie

Wednesday, 4th March 2009 at 10:14 am

Pamela, you may be onto something. A non-beta cell tumor could be right on. There is something causing over-utilization of glucose and there is a tumor. Stacy, I would print out the article and take it to my physcian and ask if this could be a consideration. When I went to the website I used the google search choice and it was the first link for the dreddyclinic article that was listed. You probably don’t need help with finding stuff but sometimes I get lost in all the choices. Wow, how great this would be if this would lead to answers for you.

Tomorrow I go for the third stent placement attempt. I would appreciate your thoughts and prayers. My reserves are a bit depleted for this one. I can never repay all of you for the support and encouragement you have given me. You are all angels in my book.
Stacy

Thursday, 5th March 2009 at 12:15 am

Thank you all for the advice. There is so much information. On Monday when I had the low sugar I ate and my husband gave me a little juice to correct the low. My sugar went up and within 20 minutes it crashed again. It takes me awhile to recover from the crash. When I was in the ER a month ago I was admitted because they gave me pure glucose by IV and food and my sugar went up and then crashed really low within less than 30min. I just don’t know.

Pamela-Thank you for the website on the non-beta cell tumor. I truly appreciate your care and research on my behalf. I looked up the info and definitely will ask Dr. Singer about it when I speak to him next week. He is out of town and will return next week. He gave me a number to call him so we can discuss my chart since I am a new patient.

The low sugars and the length of my low sugar episodes are really altering my life. I have had low sugars everyday this week no matter what I eat or how frequent.

Thanks Again everyone
pamela

Friday, 6th March 2009 at 4:18 pm

Jackie,
i am hoping all went well with your stent placement and you can go on with the full recovery that you have been waiting for! i have got my fingers crossed! Best wishes!
Pamela
Heidi

Friday, 6th March 2009 at 7:39 pm

Hi everyone,

I had a question regarding preparing for surgery. I was just reviewing a sheet Mike’s surgeon gave him asking him to “cleanse his bowels” by drinking “Citromag” and only consuming clear fluids from noon the day before. I did this last year for a colonoscopy and it was bad enough for me! However, this seems to be very problematic for Mike, as I doubt sincerely he will be functional for any length of time on clear fluids. We have a pre-admission appointment at the hospital the day before at 10 am, for blood tests etc, so I will confirm then that they want this done, as well as getting Mike to call the surgeon’s office. Our medical system doesn’t usually check in patients the day before, you just show up 3 hours before the surgery is to start.

I wonder if any of the rest of you had the same issue preparing for the surgery?

Man oh Man, I can hardly wait now. Mike has just about shut down emotionally. He just sits and watches TV. He doesn’t remember details or conversations, can’t help in the house, and is driving me nuts. He is miserable and so am I. I realize this is the illness, but it is just so hard to deal with every long day.

Please make it all end!!!!!!! Soon.

Thanks,

Heidi
Kim

Friday, 6th March 2009 at 7:58 pm

Hi Heidi,

If you go far enough back there has been some discussion around this. Some people were admitted to the hospital the night before and given an IV. Some were allowed to eat until midnight. I think I had to do the clear liquid thing from 7pm on. I was very nervous about this but the surgeon insisted. I was staying in a hotel and we asked them to make a ton of Jell-O. I woke up I think it was every hour throughout the night and slurped down a large glass full of Jell-O (it wasn’t very firm). In case my blood sugar dropped too far we planned to call the ambulance and run to the emergency room, but I didn’t need Plan B - the Jell-O worked. Man, I still get ill when I see that stuff!!!

I was a zombie the days before the operation - it was all just too much to contemplate I guess. I just did what I was supposed to, said hardly anything, stared at the walls. When you’re running on empty, this big thing is about to happen, and the thought that it would all be over soon was all just kind of overwhelming.

Be patient. Things will change and be better. Hang in there. I know its been a long and challenging haul. Its so hard to describe how terrible and strange this thing is. Your brain is really affected by it as well a your body. Hang in there. We’re all rooting for you guys. It won’t be long now!

Kim
John

Saturday, 7th March 2009 at 3:14 am

I really wish you well, all those who are about to go through the surgery, and your partners! It is so so worth it…

I have checked with my wife to be sure I am reporting correctly - and my experience before the op was much less dramatic, demanding and drastic than some of yours.
I was booked into the hospital the night before surgery, 6pm to be precise, given some light supper and allowed to snack again (cereal bar and banana) before 10pm. Then they monitored my blood through the night and placed a cannula in the small hours, putting me on a glucose drip. That was that - no enema, no weird drinks, no hypo either.

At 9.30am I was taken off and prepped and the operation began around mid-morning.

Looking back, it occurs to me that it might have been good to empty my bowels. After all, I did get a post-op abscess and who knows whether that was generated internally? We’ll never know! It was an e-coli bacterial collection and very very painful - but that might have happened anyway. And they dealt with it very quickly.

9 weeks post-op, I can report that it was definitely worth it, whatever they did to me. I am having a check-up CT scan on Monday, just to reassure me that the abscess is completely gone, and to check out some nagging backache and internal tugging feelings. These symptoms arose as soon as I went back to work! I should have waited another week or two, maybe.

I’m sure surgeons everywhere have different approaches. I’d go with whatever they say. They won’t let you suffer unduly, surely - and they won’t want to let you down. Their reputations are important to them - and us!

My good wishes and good luck!

John
Heidi

Saturday, 7th March 2009 at 12:10 pm

Wow, doesn’t this just show how different our various surgeons, procedures, and medical systems can be. I am going to ask (firmly), that Mike be given a glucose drip the night before, even if I have to do it myself!

This morning he was 3.1 (56) at 7:30 am. and that was with a PB sandwich at midnight. He doesn’t get up in the middle of the night to test and eat, because he doesn’t go back to sleep afterwards, and that has been even harder, but man he can be low in the mornings. If it is not a work day, I always seem to wake up first and nudge him to see if he is ‘there’. Luckily he hasn’t been as bad as some of you, who don’t wake up on your own in the mornings.

Something else I have determined, is that because he has put 40 lbs on in the last 10 months, he has developed sleep apnea, which cannot be good for his exhaustion. Some nights the snoring drives me into the spare bedroom! Sometimes he wakes himself right up with the snoring, but as soon as he rolls over, it starts again. I will not miss this interesting side effect either.

Those of you who had their surgeries in locations far away from their homes, who folllows up after you get back to home base? The family doctor? I am wondering how long until we will be able to fly, after he is released. If he ends up with a drain, would he need to stay close to the surgeon, or can that be followed at home. I realize this is probably very dependent on his particular situation, but we are not booking any flights home, until he is cleared to go, but I also don’t want to leave him down there, or leave my son at home alone for too long either.

These short haul flights are so expensive on short notice. It only takes 1 hour to fly between Vancouver and Prince George, but it takes 10 hours to drive, and worse in winter highway conditions.

Can you tell my anxiety keeps rising? Mike just internalizes everything, and I jsut get more and more stressed out. I have had several surgeries in my life and never had any serious complications, but somehow it is worse now that it is someone I love.

Thanks for all your support!

Heidi
Kim

Saturday, 7th March 2009 at 12:40 pm

Heidi,

My puppy ate the pages of my calendar when the operation was! I think I was in hospital for about 5 days and then a couple at a hotel. My surgeon wanted to have me come back down for a CT scan after a month but I said no thanks! I’d had enough scans and if the first several weren’t able to detect the tumor I wasn’t sure what this would accomplish. Maybe that was not smart of me but I seem to be doing fine. Again, I had no complications with drains or anything internal. I had a check up with my general doc and also with the endocrinologist who diagnosed the insulinoma in the first place.

Take one day at a time - don’t try to hard to solve things before they happen. It will all work out one way or the other. I’m sure you must be stressed, especially with lack of sleep, your son to worry about and the distance to home. It will soon be behind you, and spring is on its way!
pamela

Saturday, 7th March 2009 at 2:00 pm

Hi Heidi,
I know only to well how hard it must be for you to carry the weight of Mikes illness around daily,nightly, hourly! You love him, and we all do not want to see our husbands, wives, children suffering. My sickness not only took a horrific toll on me physically and mentally, but put a tremendous amount of stress and strain on my husband. He called me, and checked on me constantly… sometimes he would have to call someone over, or rush home because i did not sound right on the phone, no matter where he was at. Surgery is a very scary thing… and somehow sometimes i think men have a bigger fear of surgery than woman.
I cannot answer a-lot of your questions, except for that i requested to be admitted the day before surgery for the very reason of not wanting to take any chances of a sugar drop and ending up having to eat or drink something and ruining my surgery plans. My surgeon agreed. I think you should ask them to do the same. I was admitted around 5:00 p.m. and my surgery was the following day at around noon. We are all rooting for you and Mike, and look forward to you writing in on all his progress and newfound health!
oxox Pamela
Heidi

Saturday, 7th March 2009 at 3:17 pm

Thanks again, Kim

I am the official Fretter in the family. As a financial planner, my life circulates around planning for worst case scenarios and I research things until I understand them, then I worry about them. Mike is a non-fretting type of guy - mellow and easy going for the most part, so he just goes with the flow - which is probably how he has survived this experience so well. I hate leaving things to chance, if I can find a way to control them. Unfortunately, this has not been a very controllable situation and it drives me nuts.

John is right, the doctors do usually know what they are doing, however, with my Mom’s recent and painful death from incorrectly diagnosed cancer, I have become very vigilant when dealing with medical people, since they do make mistakes. They always well-intentioned, but wow, when things go wrong, it can be very deadly. I will not leave things to chance, if I have the opportunity to control them. Just call me a control freak!

Heidi
Kim

Saturday, 7th March 2009 at 3:57 pm

Heidi,

I am so terribly sorry to hear about your mom. That must have been terrible. I do not entirely agree with John. Usually doctors know best, but they can miss things, they can make mistakes, they can’t always know everything. Its best to trust your instincts and to be on top of everything that’s done at the hospital. Your husband needs an advocate and you sound like a good one! I encourage you to continue your control freak tendency - but to channel it. My brother was having his appendix out and they prescribed some important medicine for him, but it never came. My mother was and realized the problem and made it happen. He would have been in big trouble if not for her intervention.
Jackie

Saturday, 7th March 2009 at 4:13 pm

Heidi, you do need to be a control freak and ask questions and be on top your game. I am a nurse and my sister is a nurse and she came to stay with me in the hospital. I felt more at ease with another set of eyes making sure everything was done correctly. So control away. John is blessed to have you. I did not go into the hospital the day before and had to be on clear liquids all day plus the bowel prep. I had glucose tablets with me all day and I took the day off from work. It was a tough day. All that sugar made me feel sick. So, I think if he can go in the day before that is the best.

I had my stent attempt and it was unsuccessful to a degree. The MD was not thinking he could do much after looking at my prior films but after the procedure he was much more encouraged. Even though he could not place the stent he was able to open an area that had collapsed and would help the drainage to resume normally. We have a plan. My surgeon backed out the drain as far as she could. The drain was causing issues with the stent placement. I am to drain to gravity for 3 weeks see what healing happens in that time. Then I see the Endo physician in his office to see what the next step will be. I think he still plans to place the stent and he seemed really encouraged that it would be possible. Boy, this has been a journey of two steps forward and three steps back.
Laura

Monday, 9th March 2009 at 9:19 am

Heidi, my surgeon refused to admit me the night before. He did tell me not to follow the pre-op instructions I was given by the hospital though. I am pretty sure I ate normally all day, I could eat some food until Midnight, then nothing after midnight except glucose gel (yummy). I even had the glucose gel driving to the hospital and waiting to be admitted. He put no limit on the amount of gel I could have. His contingency plan was for me to go to the ER if I could not keep my sugar up and they would put me on a drip. It worked fine, though the gel is disgusting.

As for follow up, when I went to get my stiches removed, I asked about a follow up appointment and he told me “you’re cured”, no need to make any other appts unless I had unexplained symptoms in the future. Kind of funny, but it makes sense. Any of us would know if the symptoms came back so why waste the time/money doing unnecessary follow up.

good luck!

Laura
Angie

Monday, 9th March 2009 at 10:53 am

Heidi

I was left without anything on my night before the op but was booked in first thing in the morning (my argument was I would sleep normally and didnt need anything usually during the night) - which ended up as 12 ish, but they put a glucose drip in at 4 am anyway just to make sure. However the doctor the day before had told me they were putting me on an insulin drip - you may have read that already - at which point I declined !! (slightly strongly) and told her if she wanted me in a coma that would be fine, so she went and read my notes! - on that note always be on the ball as their communication is not always what it should be, I had a few problems with the NHS here with things like that, so I was always asking questions and looking things up!

I have follow up appointment every year - as, wait for it, I was so young to have an insulinoma and it could come back though unlikely!!! I was just chuffed to be described as “so young” ha ha, what ever it was!!! I have blood tests and a little chat and thats it for another year!
Im not far out of London so its no problem for me but I can imagine that having to fly and stay for a “little chat” could be a pain.

Have fun!!! good luck

Angie
Heidi

Monday, 9th March 2009 at 11:52 am

Thanks so much folks, your info has been helpful. Clearly the assorted methods have worked despite being different, so we will just see how it goes, and if necessary I will take him to the ER and they can deal with it!

It has been a sad weekend in our house. Our 17 year old cat, Clara, had to be put down today, as she was developing acute diabetes on top of an existing thyroid condition. It has been very hard to say goodbye to someone who as been a part of our lives, even before our son was born. Our hearts just ache right now. Bloody pancreas and its diseases are a bane of my existence these days!

Well, Mike is an elementary teacher, and teaches computers to all 425 students in his school. So he as been working on a short presentation to give to all the classes this week to explain what has been happening to him, and why he will be away until further notice when they get back from their week holidays. They already know something is up, since he has been away so many days, and always has his OJ to sip while he teaches. Some have also noticed his weight gain too.

Well, just 10 days left until we get the ‘cure’.

Heidi
Anne

Thursday, 12th March 2009 at 1:09 pm

Is stabbing back pain a symptom of insulinoma?
Kim

Tuesday, 17th March 2009 at 1:32 pm

Hello everyone,

I was just reading about Justice Ruth Bader Ginsburg. I find it interesting hat her tumor was found by CT scan and it was only 1 cm. We seem to have had such problems finding our tumors and they are usually (a bit) bigger than that. I wonder if cancerous tumors are easier to find for some reason.

Best to you all,

Kim
Kim

Tuesday, 17th March 2009 at 1:33 pm

Dear Heidi & Mike,

Looks like you’re two days out - just want to wish you all the best. Do keep us posted! I’m thinking of you!

Kim
Jackie

Wednesday, 18th March 2009 at 10:42 am

Kim, mine was just the same as the Justice’s. It was found by CT and it was just 1 cm. I was shocked they found it so easily. So maybe location may be part of the issue.
pamela

Wednesday, 18th March 2009 at 12:37 pm

Jackie
was your tumor malignant? Hows the stent feeling?
Does anyone really know what the chances and how often are there is to have a reoccurrence with these tumors, malignant and benign?
Heidi,
i am so sorry to hear about your kitty cat. I have lost a very loved animal before…. and it is heartbreaking. hope you all the best in Mikes surgery tomorrow, your in my thoughts and prayers.
xoxo pamela
Heidi

Wednesday, 18th March 2009 at 5:06 pm

Hi everyone, we are in Vancouver and things are getting interesting!

We were in the pre-admission clinic this morning when I asked, just how they expected him to complete the required bowel cleansing and fasting when he would become hypoglycaemic within 2-3 hours and would be a complete mess not long after? I said I could see calling the ambulance in the middle of the night to get him down to the hospital, since I certainly can’t lift him. The anaesthesist who was checking Mike out, then said, “Oh yeah that will be a problem in this case, won’t it?”

She then sent the staff nurse on a hunt for Mike’s surgeon (who was in surgery at the time) to request that Mike be admitted to the hospital today for monitoring and a glucose IV overnight. They eventually got it all organized and he is checking in at 7 p.m. tonight. He goes straight to the OR admitting first thing in the morning (5:45 am PDT). I am much relieved, as are the rest of the family!

They are hoping he will only need to stay in for the surgery day plus 3 days, and the operation is planned for about 3 hours. So far, so good!

Will touch back again sometime tomorrow, when I get back to my computer……

Thanks again for your support and best wishes. The doctors and nurses have all said I am very well informed and I credit this blog with most of that knowledge.

Heidi
John

Wednesday, 18th March 2009 at 5:31 pm

Heidi - this seems to be working out so well for Mike at last. Do be patient, though, if the surgery takes longer than 3 hours. That’s the duration for laparoscopy - and there’s no certainty that’s going to achieve the result he needs. I was nearly 6 hours in there, laparoscopy wasn’t successful, needed big surgery - and 10 weeks on I am stronger than ever before, cured, no pain - and back to full work.

They might as well get it done right after all the faff you’ve had! Just be patient… a few more hours, that’s all.

My thought are with you.

John
Jackie

Wednesday, 18th March 2009 at 9:27 pm

Pamela, I am so fortunate that mine was not malignant. The tissue report said it had developed characteristics that are cancer-like so could not say if it could have developed to that level. So far they have not been able to get a stent in place. Today is the first day the drainage is less so I am hopeful that the fistula is healing on its own.

Heidi, you and your family are in my prayers. We all share your gratitude with this site. What would I have done without it.
Heidi

Thursday, 19th March 2009 at 11:42 pm

It is just after 10 p.m. and we have just walked into my Dad’s apartment after a very, very long day. Mike’s surgery was delayed to 11:30 am, then to 12:30 pm. Thank heavens I had pushed to have him admitted and put on the Dextrose IV, as he apparently started crashing about 1 hour after we left him last night. He settled down once on the 10% dextrose drip and stayed constant at 5 (90 mg) from that point.

The surgeon called me at 3:30 pm to tell me Mike was just going into recovery and should be moved to the surgical step down ward in about 2 hours. The operation was a success, one tumour removed and the other lesion turned out to be a cyst. The tumour was in a ‘very inconvenient location’ and took a bit of getting at, being located on the back side of the head of the pancreas. He has a drain in to help the pancreatic duct which was disturbed during the surgery. They did an ‘L’ shaped cut - haven’t seen it yet, but the bandages looked interesting!

It took a full 5 hours for him to come up to the ward. Mike’s parents, Colin and I as well as brother, Iain, spent the time pacing, fretting and wondering what was going on. Apparently he was not stable, was having pain and not breathing well, so it took a good while before they felt he was ready to move. He will be in the step down unit (1 nurse per 2 high-need patients) at least until Saturday with another 5 days in the regular ward once he is ready to be moved there.

It was hard for all of us to see him so helpless and frail looking. He has an epidural for pain, a gastric drain down the nose, a drain for the pancreas, as well as an PICC line in the neck for IV and the catheter to deal with all the fluids they keep flushing him with. He is tied down from every angle. He will have the epidural for several days, but is only numbed in his upper abdomen, and will be able to walk with it in due course. They keep checking the epidural by running a bag of ice over him (and he really enjoys that!) They tell me this is the best pain control for the upper abdomen, apparently.

So next step is complete, now comes the hardest part in many ways. This is the first time Mike has every been seriously ill in his life and this is a very new experience for him. I hope his usually very positive attitude kicks in soon, and he starts to bounce back. He was being slightly humorous when we visited with him tonight so I know he can do it.

Colin and I are exhausted and off to bed for now. Thanks for all being there for us! the power of positive thoughts always makes a difference. We appreciate the friendship and support we have felt.

Talk to you all again soon…….

Heidi and Colin
Kim

Friday, 20th March 2009 at 5:01 am

Heidi and Colin,

Wow, sounds like a very long and exhausting day, but that all is well now. Barring complications, recovery will not be as long as it looks right now with your husband looking very fragile and so plugged in to machinery.

You’ve both done an amazing job being there for him. Be patient a little bit longer.

So glad to hear that you are on the way. Thanks for keeping us informed!

Kim
Heidi

Friday, 20th March 2009 at 7:22 pm

Day 1 post surgery:

Mike has a fever and looks it. He is flushed, shiny with sweat and feels hot to the touch. They have taken chest x-rays, and are working on getting the fever down. He was up in a chair for a few minutes, but the nausea was too much and he had to go back to the bed very quickly. His lungs are clear, but he wants to cough - not funny!. He has pressure stockings on, and all the tubes are still in.

His blood glucose was 11 (198 mg) this am, and they gave him insulin - he finds that quite ironic. However, his pancreas has had a bit of a beating, so I am not surprised - at least we know the tumour is out!

We spent only about 45 minutes with him, as he is not much up to conversation at the moment. Both his brothers are dropping by today as well, so I think that will probably be quite enough.

We will be back down tomorrow, and are going to take a quiet evening in front of the TV.

Heidi and Colin
Peggy

Friday, 20th March 2009 at 7:59 pm

Heidi,

I’m glad to hear that the surgery is over. This was such a major operation, I don’t think people realize how big of a deal it really is. He is very fortunate to have his loving family looking after him. Don’t be too surprised as his recovery may seem difficult as well. I am surprised to hear about his fever though. That’s never a good thing after surgery. Epidurals are really a God send. Let him know that we feel for him, but are very happy to know that this awful disease is in his past. Have a good rest, I’m sure this is taking a toll on you and your son as well and you will need your strength.

Peggy
Jackie

Friday, 20th March 2009 at 9:04 pm

Heidi, thanks so much for letting us know how all of you are doing. I know this has been a rough couple of days for you and your family. He will have a couple of rough days ahead but then will get better quickly. I did not have an epidural and am glad he does. The PICC line is wonderful so he won’t have to be stuck for blood draws. I loved mine. Even though the pain was difficult I immediately felt so much better with normal glucose levels. I hope this will be the same for Mike. It is a major major surgery and people don’t realize what an ordeal it can be. Unfortunately both of us had ours in the head of the pancreas. If it had been located in the tail it would have been so much easier. Rest as much as you can. You both remain in my thoughts and prayers.
Heidi

Saturday, 21st March 2009 at 12:39 am

Hey Folks, Thanks!

Heidi
Heidi

Saturday, 21st March 2009 at 7:36 pm

Hi again, Folks

Mike has moved from the high-needs unit to the regular ward this afternoon, after they took out the NG tube. He hasn’t felt like eating (clear fluids available only), but was up in his chair a bit longer today, and the fever is under control. They have started tapering off the epidural meds and are moving him to regular pain meds now. He is still on anti-nausea drugs, as well as IV fluids. His sugars were a bit lower today, but he still needed another shot of insulin. He welcomed a sponge bath from me, and I shaved him for the very first time ever. He wanted to be spruced up as he will start having visitors now that he is in the regular ward.

So, things are getting better and Colin and I are more relaxed now. Colin is going to spend the night with his uncle and grandparents (Mike’s parents are 81/87), and I am going to have a glass of wine and read a novel on the sofa by my self.

Ta Ta for now!

Heidi
Kim

Sunday, 22nd March 2009 at 5:20 am

Heidi,

Wow, sounds like things are moving along. Great news! Please tell him to stay on top of the pain meds if he is in charge of them. You can feel like you’re doing fine and put it off, and then before you know it you feel like you’re doubled over!! It’s too late and you have to get a shot of something.

Hope you had a peaceful and relaxing evening!
Jackie

Sunday, 22nd March 2009 at 6:56 pm

Heidi, it is wonderful that he is progressing so well. I second what Kim said. And the more he can get up and move the less the pain will be. I did not believe them at first because it hurt so bad but it was true. Each time got easier and easier. Best wishes to Mike and take care of your.
Janet

Monday, 23rd March 2009 at 8:37 am

Heidi!

Glad that Mike is recovering and is getting through the worst of it. It is a huge op and as as already been said, people don’t realise how big an op this is, but as I have said before to others, althought the first day or two after is very difficult, recovery is amazing once it takes hold, each day you feel so muc better than the day before. My prayers are with you.

Sorry I have not posted on here lately I am doing Grade 8 piano exam tommorrow and it has taken up so much time. I hope and pray that everyone is doing ok and will be back real soon. Love and best wishes to all.

Janet xx
Heidi

Monday, 23rd March 2009 at 11:24 pm

Colin and I were up early this am to get Colin on the 8:55 flight back to PG and then I battled rush hour traffic from the airport to Vancouver General Hospital. The traffic in this city is horrendous, as I am starting to remember!

Mike had a tough time last night and into today. He has not been able to keep oral fluids down, and his gut hasn’t started up properly yet, so discussions were held this afternoon on putting the NG tube back in (not Mike’s first choice, certainly). His blood sugar continues to be above normal and he is still getting insulin shots several times a day. They have uncovered the staples (24 of them) to get air on the incision which looks good and they discontinued his oxygen today. He is now down to the IV, the drain, and his catheter. His abdominal pain is generally not bad, but he is in excruciating back pain. He doesn’t normally sleep on his back, but he cannot take the pressure on his belly when on his side so he is miserable in bed. I spent 10 hours with him today and watched him doze in his chair for a couple of hours, head bobbing away as he tried to stay upright, but he wouldn’t get back into bed. I tried to support and balance him with pillows, but that doesn’t work too well really. He was quite low emotionally today, probably as he finds he cannot get past these challenges easily and he is not in a comfortable place.

The highlights of his days are the regular arrivals of his clear fluid diet, which he can’t bear to eat, tuning into the Space channel on TV for some Star Trek and me giving him a wash and shave. He hasn’t had the strength to read yet. The nurses are very good with him, and are making sure to keep his pain meds up, so he breathes properly, and gets some rest and tries walking a little bit every day.

Therefore, no news of when he gets out yet as there are still a number of hurdles to clear. There is absolutely no way he is going anywhere soon, let alone onto a plane. This could take a while yet!

Bye for now…….

Heidi
Kim B

Wednesday, 25th March 2009 at 9:04 pm

Hi Heidi, Im Kim B ( not the other kim you have been talking to ) I as well had A insulinoma removed in 2006- and geuss what—I live in PG as well. Knowing that this is so rare ( 4 in a million ) what are the chances ! I’m suprised that you had to go to Van for the surgury as I had mine done in PG I hope all is well —Cheers-
John

Thursday, 26th March 2009 at 2:37 am

Greetings, Heidi!

Be patient and strong - I am certain these difficult first few days for Mike and you will quickly ease. I can well remember the first days of pain and serious backache - and the first little bits of comfort, the showers and back massages, the first beard trim - and of course the great day when the drain was removed and I could again lie on my side.

I am now, 12 weeks on, back at work and only occasionally suffering any pain at all. My surgeon and endocrinologist are checking me regularly - and I really feel cured!

Be patient and strong… it’s a ghastly disease and a fairly grim process of curing - but it does work. The outcome is worth the pain.

Supportive thoughts and positive vibes..
John
Heidi

Thursday, 26th March 2009 at 9:55 am

Hi everyone,

What a difference a day makes!

Mike started on solid food yesterday, very small amounts, but he has been able to keep it down so that corner has been turned. Of course the doctors and nurses were very happy that his gut has started to work, and that was when they decided to try the solid food. He was physically and emotionally much healthier looking on Wednesday. He had 1/2 of the staples removed and the drainage has stopped producing, so that may come out today. If things go well today, they may release him on Friday. We would spend the weekend at my Dad’s apartment, and then get a flight home sometime early next week.

Will let you all know the score tomorrow…….

Hi Kim B,

Who knew! We were referred to a Vancouver Endocrinologist by Dr. MacRitchie and then to Dr. Scudamore who is the head of Liver and Pancreatic surgery at VGH/BC Cancer Clinic, as Dr. MacRitchie felt there was no one in PG who had the level of experience needed to help Mike. They only found the location of the tumour in February 09, when he had the endoscopic ultrasound down here. Where was your tumour located in your pancreas? Mike’s was 2 cm on the backside of the head, and was not visible on any of the tests done earlier. How soon did you get back to ‘normal life”? Maybe we can meet for coffee or a phone call and you can tell Mike a bit of your tale of survival? He will be amazed to hear he has a ‘neighbour’ with a similar experience. We live in College Heights and my personal email is hshearman@shaw.ca if you would like to contact me directly. This is just cool to find someone so close to home!

Hi John,

I have been watching your progress with interest for sure, since you are just a few months ahead of us. 12 weeks and living ‘normally’ is a great indicator of how things willl go for us. Especially considering that you were knocked back with your abscess and re-admittance to hospital, I am truly excited for our prospects. Thanks for the words of encouragement.

Heidi
Kim

Thursday, 26th March 2009 at 10:17 am

Great news Heidi! Sounds like you’re out of the rough now!
Kim B

Thursday, 26th March 2009 at 7:55 pm

Hi Heidi. I know Dr MacRitchie Well as I see him every three months ( I’m diabetic now) He had told me that there was someone else in PG with an insulinoma last year. My tumour was deep in the middle so I didn’t know if they where doing the wipple or a distial until I woke up from surgury. Thank the lord they only did the distial pancreatectomy ( after bio they found two more) I got back to normal life after about 2 months. I live in Beaverly so where preaty close. I always enjoy a good cup of coffee so when mike is up to it that would be great . Funny but I know exactly what he is going through. will send you a e-mail and you can contact me any time you need to! All the best Mr Kim B
Jackie

Friday, 27th March 2009 at 10:49 am

I wanted to share good news with all of you. My drain came out today!!!! What a celebration. And how awesome Mike is doing so well. I am happy for both of you. Life will get back to normal and there is nothing like being hypoglycemic free!!! Wishing you safe travels home.
John

Friday, 27th March 2009 at 11:18 am

Jackie - what a star you are!
And how good does it feel…???!!! Freedom from that blasted plastic tubing, the pins and bags, and no more need to see stuff it’s better not to see! Soon you’ll be removing the dressings and washing freely.

Watch yourself - don’t go wild! You’ve not had an easy time - but you are into the better times now! Cured!!! No more ‘episodes’!!!

best wishes
John
Heidi

Saturday, 28th March 2009 at 12:35 am

Hi again, folks,

Mike did not pass his CT exam and will be kept in the hospital at least until Monday. The CT showed that the hemo-vac drain for his wound was not working and a pocket of fluid was building around the pancreas. On Thursday evening he started showing a fever again, and the doctors made the decision on Friday morning, to keep him in to treat this build-up of fluid further. The fluid build-up is visible under his skin as a 3 inch long bump just above the lateral part of his incision. They have taken out 1/2 of his staples (alternating) and he would like the rest to go now, as they itch. They will do another CT scan on Monday to assess the progress and decide what happens next. Needless to say, Mike is very disappointed!

However, the good news is he has developed an appetite (even for hospital food), his blood sugars are stable and normal, his pain is manageable without narcotics and he has lots of cross-word puzzles and sudoku books to keep him busy.

Take pity on the poor fellow, that was day 8 post-op and he is not having much fun any more. He wants OUT.

Heidi
Heidi

Saturday, 28th March 2009 at 12:49 am

Hey Jackie

having just had Mike go through being held in hospital to deal with his drain malfunctioning, I am beginning to appreciate what you have been going through. You must be so relieved to get rid of your pet and leash.

Right now they are trying to flush Mike’s tubing backwards and re-establish it’s draining function to clear the build-up. I have been wondering about getting him on a plane with the drain still in place - will that violate the 100 ml liquids rule, perhaps? It is hard enough going through security at the airports as it is, I do hope this doesn’t cause some type of hold-up. Stranger things have been known to happen.

However, it is obvious that drains are a part of this process, and it will ultimately pass too. At least it isn’t a bag of urine! Oh how you must get used to the indignities of it all…..

Heidi
Kim B

Saturday, 28th March 2009 at 11:45 am

Oh hospital food !! I found out on day 7 that I had to go on a diabetic diet. I ask the nurse ” you mean the food can get worse” she smiled and said ” Oh yea” Hang in there, I was out on day nine although they wanted to keep me longer
SUE

Saturday, 28th March 2009 at 1:29 pm

I had my surgery on Jan.28. It turned out to be a whipple operation. I was in the hospital for two weeks and then went home. Two weeks later i started vomiting and became dehydrated and had to be readmitted to the hospital. After an MRI and liver, biopsy it was determined that I had a drug induced hepatitis. I spent another 2 weeks in the hospital. I am jaundiced and tired and weak most of the time. I have seen a liver specialist and i am taking 40mg of pregnisone day. I have lost 20 pound since the surgery. the doctor has said that it takes time for the hepatitis to go away. Has any else had this experience or know anything else about it?
Janet

Saturday, 28th March 2009 at 2:09 pm

Jackie! So pleased to read that at last you are drainage free! Well done i bet you are really heartened and feeling more free at last. Heidi, sorry to hear Mike has to stay in over weekend, hoping and praying that news is better next week, this drainage really is horrid, but its great that he has an appetite at last; that always a good sign, lots of love and prayers remain with you.
Sue. You must be so infortunate to get hepatits fter your op. As if its not bad enough going through a whipple; and I know first hand how that in itself is a mountain, but to have drug induced hepatitus after, my heart goes out to you. I have not heard of this happening before, but maybe others have. Take care.
Love to all!

Janet
Jackie

Sunday, 29th March 2009 at 3:41 pm

Heidi, you bring up a good point with flying with a drain. I thought about that and wondered about the expansion with the bulb. Pressure can build up inside of containers so find out if that is a concern. You will probably need a doctor’s note for security to say that the drain is not some type of explosive material. We live in strange times. I am sorry his tube was not draining and hope they can get it fixed soon.

Sue, I have not heard of drug induced hepatitis with this particular surgery but it can happen anytime you take meds. It all depends on the liver’s ability to metabolize the drugs. I am so sorry you have had this to deal with. The Whipple should be more than enough to contend with. I was in the hospital for two weeks and thought I would lose my mind. I am so sorry you had an additional two weeks.

Thanks everyone for the encouraging words. It is so great not to have that drain anymore. I can actually wear normal clothes. I go on Tuesday for a MRCP to view the pancreatic duct and make sure all is well.
John

Monday, 30th March 2009 at 3:49 pm

I had a meeting with my surgeon today - 12 weeks after surgery - and he’s pleased that all’s nearly well though I am getting backache, possibly caused by some bowel adhesions post-op. Has anyone else had this experience?
Some days I have no pain, or short-lived pain. Other days it nags away for hours.

He did consider putting me on a week of antibiotics - but a clear CT scan and blood tests said not. He’ll check again and is ready to have me into his clinic any time the pain gets worse. And he wants me to monitor my blood pressure which is a bit high.

Again, anyone else recognise these symptoms post-op?

I am not complaining! My treatment has been miraculous. I feel great.

He had another insulinoma case a week or two after me - and she only had keyhole surgery and is fine! That made me a bit jealous for a moment - and I wonder if the practice he had on mine benefited her? The answer is, of course, yes! It should always be so! I am sure I benefited from earlier patients, exactly the same. With such a rare condition we each play a part.

Good luck to all.

John
Jackie

Monday, 30th March 2009 at 8:09 pm

John, I have not had any back pain. I am still dealing with the pain left from the drain removel and that is a bear. I started antibiotics the day they took out the drain so that is not it so I am thinking any drainage must be irritating or burning that tunnel. I hope they find what is causing yours and you get relief soon. It is not too much to ask to be pain free even though we do feel so much better from the tumor being gone. Feel better soon. Jackie
Heidi

Monday, 30th March 2009 at 11:14 pm

HI Everyone,

Mike is still in hospital on the 30th. Saturday afternoon, they pulled out his drain which was not working, and it geysered brownish fluid all over the poor nurse and his bed! Then it oozed into a dressing for 24 hours, and sealed itself up. However, this morning, he failed the CT again. The fluid patch has grown, and since the previous night he was having horrendous low back pain so he didn’t sleep. After the CT he came back to his room, and started to have some of his long overdue (and now cold) breakfast, when he made a funny face and started vomiting. By the time he was done, the nurse and I were soaked, the bed was soaked and, of course so was Mike. I have never seen Mike do projectile vomiting before and I hope never to again. They now think his bowel is not working properly, and the fluid build-up is pressing on something that is bothering his back. Good News is that he hasn’t been feverish since Thursday.

Well, that sealed his fate, and having now connected the dots, doctors have decided the fluid needs to be removed (aspirated) in the radiology lab, but they couldn’t find an opening for him this afternoon, and they are fitting him in tomorrow. So there goes another day. Otherwise, Mike is more than ready to make his escape. I do wonder if they will reinsert the hemo-vac drain? Meanwhile, my son is not coping very well at home alone, and I may have to make a dash back there to see if I can get him back on track. I am going nuts! they both need me, and are located about 800 km apart! which one do I focus on?

I keep saying to myself, this will end and we will go home and all will get better……..

Heidi
Heidi

Wednesday, 1st April 2009 at 2:10 pm

Hi everyone,

Mike is currently in the CT lab, having his drain re-inserted. He spiked a fever on the 31st, and when they tried to put the drain in at the ultrasound lab, the radiologist said she couldn’t see clearly enough to do it safely, so she referred him to the CT to try it, but it was too late in the day to get on the CT schedule.

He went down at 10:30 am today, and I am going to go to the hospital shortly to see the end result. He has been in excruciating back pain for the last 4 days, and he has been put on dilaudid 4 mg every 3 hours by injection to control it. Dr. thinks the fluid pocket is pressing on his back nerves. He is also back on a liquid diet as his gut has quit working again. More vomiting yesterday. He is so miserable! I just hope this drain starts him down the road to improvement. Today is day 14 in the hospital!

Heidi
Kim

Wednesday, 1st April 2009 at 3:07 pm

Heidi,

So sorry to hear that Mike is having a hard time of it. Please let him know that we are all pulling for him and hope you will be able to go home soon.

Jackie,

That must be a great feeling to get that drain out of you and hope that the pain is subsiding.

I have a question for you post-operatives: Sometimes I get a tightening feeling just below my sternum. It usually comes after I have inadvertently tightened my stomach muscles I think - for instance, if I slip on something, so perhaps it’s a kind of muscle spasm. It isn’t painful at all, just distracting. Does this sound familiar to anyone out there?
Jackie

Wednesday, 1st April 2009 at 9:39 pm

Heidi, my thoughts and prayers are with both of you during this very difficult time. I hope the drain placement was successful and they can start getting that fluid drained out. He has to be miserable and you must feel helpless. You are both due for some good news. Thanks so much for keeping us so informed with his progress. It will all be worth it once he has progressed beyond this.
Jackie

Wednesday, 1st April 2009 at 9:43 pm

It looks like they are not through with me yet. My MRI showed a significant stricture of the duct where the leak healed. The decision is to try a stent in about a month to dilate this area. If successful there will be a sucession of stents progressing to bigger diameters to dilate the area. Mu surgeon assured me there are other options if the stent cannot be placed but hopefully that can be done as it is probably the best option. Other than that I am doing great, back at work, and just some discomfort where the drain was removed.
Heidi

Saturday, 4th April 2009 at 7:59 pm

Although thoroughly enjoying his stay at the Club VGH Hospital, Mike is just about ready to be released on Sunday the 5th. The new drain was put in on Wednesday, and started to work immediately to relieve his pain and suffering. His temperature is finally back to normal since last night. He is still on antibiotics but has been taken off oxygen since yesterday, and should have the drain removed again tomorrow, prior to discharge. The other good news is that he should also be allowed to fly on Tuesday, as long as he rests up on Monday, so we can go home!

What a challenge; 18 days and counting since surgery day. But the real recovery will start once he is in his own surroundings, with his own family and pets as well as having his normal diet available again. He has lost 6 kg so far and figures that is the start of a good thing. Of course, I will have to do my weight loss the old fashioned way. And I have certainly stress-eaten my way though this process I can tell you!

Thanks for being there thinking about us and giving us encouragement - it has meant a great deal to all of us…

Heidi, Mike and Colin!
Jackie

Sunday, 5th April 2009 at 10:44 am

Great great news. I am so glad to hear Mike is doing so well. You have been on quite the journey. Safe travels next week and keep in touch and let us know how he is doing. My surgeon said that her patients lose an average of 50 pounds after the tumor is removed. I am holding her to that because I gained that much trying to eat to keep conscious.
Marcus

Tuesday, 7th April 2009 at 8:14 am

What a great site this is. Thank you so much for your post. My wife has been struggling over the last year and we had no idea what her problem was. She passed out this past summer but her problems were always spread out over time. Around October she passed out at home and we had to call 911. When the paramedics checked her blood sugar it was at 25. That’s when we started our journey. She had another low Christmas day when she couldn’t remember things. We went to an endo on 2/6 of this year. The Dr. said it was reactive hypo and we went to the nutritionist. After struggling to keep her blood sugar in the 50’s the Dr. had her wear a monitor for 3 days. This helped so much in getting her a correct diagnosis. In her first blood test done on day 1 visit to the Endo her pro insulin was high even though her C Pep and insulin were normal. The Dr. dismissed this. After the 72 hour monitor showed such lows he redid the test which came back with the same results. She went in for a 72 hour fast last week. 30 minutes in she was at 56. 30 minutes later she was at 45 and 15 minutes later she was at 43. They stopped the test that day. She is now headed to see the surgeon in 2 days. We were lucky to have a friend who is a retired surgeon who made a phone call to get us seen quickly. I’m assuming she’ll have some tests done and we’re hoping for surgery asap. All of your postings have helped me so much. We are anxious to know what procedure will be done and the recovery time.
Heidi

Tuesday, 7th April 2009 at 11:10 am

And we are off! The hospital has decided that Mike was in hospital for his crisis already (this is definitely true) so we can go home now. Mother-in-Law is driving us to the airport at 1 pm and the flight is at 3:15 and takes about 1 hour, so we can almost smell home from here. (I hope that isn’t the smell of an unwashed teenager!) He tells me the house is completely empty of food, so I will be turning around and running home to buy some groceries just to get dinner and breakfast organized. I suspect the house is something unbelievable too.

Mike’s got an appetite again, but he can only eat very small amounts so I will have to try and match him, vs the other way around, since my sympathetic stress eating has put me up over 20 lbs too. Well, he is tender and easily tired and all the things he should be post-op, but every day he gets a little stronger. The hole left by the 2nd drain is weeping a bloody pus goo, but it has already tapered off considerably and the super antibiotics ($10 per pill) seem to be working.

Life resumes; Hallelujah!

Heidi
John

Friday, 10th April 2009 at 2:44 am

Heidi and Mike - congratulations and good luck over the next few days and weeks. It sounds as if the worst is well and truly over. You had a difficult time but it will seem like nothing compared with the benefits of he cure.
You deserve to have no more setbacks. Keep an eye out for backache and fever which might signal infections - that was my experience and was unpleasant in the extreme and left me, according to my surgeon and my endocrinologist, with ‘adhesions’ which may cause trouble at some future date, possibly years ahead.
Apart from those I have no further complications and they are well pleased with me. They still want me to have some scans in a few months time.

You will want to get back to normal working soon but do take that very easily and seriously. None of us is so important that the rest of the world can’t wait a bit longer for us! There will be days when things hurt a bit, inexplicably, and you will get bored and fidgety. I am told by a fellow insulinomiac here in London that it was 6 months before she actually stopped thinking about it at all. The scars won’t vanish quickly either! I did do some massaging with various oils - but I don’t think they helped! Maybe when the summer comes I shall show them off with pride by the pool when I visit North America to give concerts. We’ll wait and see.

Stay well - and that goes for all reading this!
John
Heidi

Saturday, 11th April 2009 at 2:32 pm

Thanks John,

The flight day was difficult for Mike, but we are at home now and he is happy to be in his own space, although he is still not feeling at all well. The drain hole (2nd) is still producing pus and weeping a clearish liquid, and he has an appetite to eat, but what little food he does eat is not going or staying down well. I can see the weight loss already.

Our family GP has extended his antibiotics for another week, and has given him Nexium to deal with the acid reflux that came with the antibiotics. She also took a swab from the wound to check it out. I have been to the health food store and gotten him some high pro-biotic yogurt today to try and help with his digestion. No pain though! He hasn’t even had any Tylenol or Advil today and his incision scar is healing very well. I took his temp last night but it was normal, even though he was sweating and shivering. Our GP is on call at the hospital this weekend, so she has given me her pager number if he gets worse and she will see him in emergency. Mike does not want to be put back into hospital at all, but it is still a definite possibility.

Other than that we are doing ok. Even the family pets are starting to calm down again and Colin is clearly relieved that we are back.

Despite the challenges of his recovery process, Mike is so very glad he has had the tumour removed and he has stable blood sugar again. The results will justify the process and he is determined to get better, enjoy his summer, and return to work in September. This is the Easter long weekend, so the weather is just horrific; mixed rain and snow, but at least the snow banks are melting and there is some hope of spring in our future. Oh well, we will just soldier on…..

Heidi
John

Saturday, 11th April 2009 at 4:01 pm

Go Mike - and go Heidi!

Believe in the future again! You have got it back! Take it a day at a time. Anything can wait.

John
Jackie

Saturday, 11th April 2009 at 6:27 pm

Heidi, what a mess he is going through. If he does not feel well soon do take him back. There is a worry that he is leaking pancreatic fluid and if so he may have to have another drain placed. Mine was in for 8 weeks before my duct healed. Please give him my best and I hope he feels better soon.
Laura

Monday, 13th April 2009 at 9:58 am

I know I have said this many, many times and am probably beginning to sound like a broken record to you all, but I strongly encourage any of you who have not yet had surgery to speak with your surgeon about the necessity of drains. My surgeon Dr. Matthews who is the cheif of surgery at the University of Chicago does not use them anymore for our types of surgery. He believes they cause more complications and unnecessary patient pain than they prevent. I had absolutely no issues at all like are described above. I was in the hospital for 7 days, then went back to get my stiches out and that was it. He also feels that there is no need for a follow up appointment ever as insulinomas hardly ever recur, and if they did, we could pretty much diagnose ourselves at this point. Just something to consider. If you read above, look at how much pain and suffering has been caused by these drains that may just be the old school way to do this. Good luck to you all!
Audra

Monday, 13th April 2009 at 10:24 am

Hello everyone!
I am a 40 year-old Canadian woman recently diagnosed with insulinoma following a 72 hour fast. I am awaiting an abdominal ultrasound and an MRI. I’m wondering if anyone had an abdominal ultrasound that was successful in allowing visualization of their insulinoma? Happy Easter and happy healing.
Jackie

Monday, 13th April 2009 at 7:43 pm

The issue that I am aware of is that if the pancreatic duct is leaking pancreatic fluid then it can be an issue. The drainage has digestive properties that can be a danger to the surrounding organs and tissues. I had mine for 8 weeks and it was removed once the duct healed and I no longer had drainage. Not to even begin to say that Mike is having the same issues. But when the tumor is in the head of the pancreas it can be a problem with leakage.
Maisy

Wednesday, 15th April 2009 at 8:51 am

Hi
I have been thinking that I am nuts, but having read this website I am wondering if I have the right symptoms after all! I have had hypo attacks (shaky hands, almost ’shaky’ vision and a desperate need to eat, for a long time. These are much worse during my pregnancies. During my last pregnancy, I thought I was ‘hypo’ and was in the sweet aisle trying to buy some sweets when I had a seizure and woke up in hospital. I asked at the time whether I could have been hypoglycaemic, and they said it wasn’t too bad - they checked it when I finished seizureing and it was 2.9 (lowish). I thought the whole point of the body seizuring was to induce a sugar release??
Anyway many MRI’s later, they said I must have epilepsy but I haven’t had another episode in 5 years. I have had many ‘hypo’ episodes. I am fine if I eat correctly, avoid sugar (i will just about pass out if I eat a pavlova or heavily sugary food). I sometimes take a blood sugar and it is between 2.2 and 3 if I feel shaky, but I have never seen it over 4 or 5.
During exercise ( I do endurance running and triathlon ) I feel like I underperform constantly, and if I push myself I definitely get double vision. I went to an ophthalmologist for a check up as every time I did a fast run I would have extreme double vision - almost falling over because I couldn’t work out how far away the road was from my feet!
I was thinking of doing a proper glucose curve during the day - would this be helpful? I have often asked doctors if I could have hypoglycaemia and they shrug it off and tell me to eat more regularly (!?!)
Thanks - great web discussion
Maisy
Heidi

Wednesday, 15th April 2009 at 9:19 am

Mike is back in hospital…but this time in Prince George. He took a big downturn over the Easter weekend, and started vomiting again, getting weaker by the day. He felt a bit off when he visited our doctor on Thursday and she gave him some medications to try to ease his symptoms. We were in telephone contact with her daily over the 4 days, and she saw him again today in her office. He vomited while in the office, and she determined that he was very dehydrated; possibly developing gastritis or a bowel obstruction, so she had admitted him directly to the hospital, through emergency to have him checked out.

Unfortunately the emergency department was frantically busy, so it has taken most of the evening to get him into a proper nursing bed, but he is now on IV fluids plus several drugs to combat the bad stuff going on in his body. He also had more blood tests and blood cultures, as well as an abdominal x-ray to see if there was a blockage developing. Our Dr. plans to keep him in 2-3 days at least, to make sure he is functioning normally before he can come home again. Because he is considered a transfer patient from VGH, he is under contact restrictions (gloves and gowns) until they culture swabs for MRSA (they tell me this is unlikely, but required as he was in another hospital until recently).

He did not look happy when I left the hospital at 11:30 pm, but he had a bevy of nurses working on him and I felt he was in good enough hands that I could come home for something to eat and try to sleep.

If this is how he copes with illness, I want the old Mike back! This is really the first time he has been seriously sick in the 21 years that I have been married to him and I liked it better the other way!

I will keep you updated when there is more news. Thanks!

Heidi
Kim

Wednesday, 15th April 2009 at 1:41 pm

Heidi,

Wow, you guys have really been through the wringer! I am so sorry to hear about these setbacks. It’s always so exciting to see one of “our gang” off to surgery & a better life just around the bend, but I guess some bends are longer than other!. At least you are home now - I imagine that will help everyone’s state of mind a lot. Thinking of you all and hoping Mike will be on the mend soon.

Kim
Heidi

Wednesday, 15th April 2009 at 6:18 pm

Another day, another CT scan and the diagnosis is? Fluid build-up that is pressing the stomach and blocking the opening to the small intestine, thus the vomiting - nothing can go through. So, guess what the cure is? another DRAIN! Mike is scheduled to have a CT guided drain placed tomorrow sometime. Meanwhile, he is on IV fluids, no food or drink by mouth and a captive on the 3rd floor surgical ward of Prince George Regional Hospital! It was April 17, 2008 I have him ambulanced to PGRH when he collapsed from the insulinoma, and it now looks like he will spend the anniversary in the same hospital.

I am feeling a great sense of deja vu and more than a little bit of frustration.

Bye,

Heidi
kimb

Wednesday, 15th April 2009 at 7:29 pm

Wow you guys sure have been through the ringer! I geuss it will be just a little longer for the back to normal but it will come. Take care and if there is anything I can do- just let me know-Cheers-Kim
Jackie

Wednesday, 15th April 2009 at 8:53 pm

I am so glad he is getting another drain. I hope they will leave it in until they are sure there is no further drainage. If it is the duct that is leaking it will heal. It just takes some time. Please give him our best and I hope this will be the last anniversay in that hospital. He is due for some good news and some relief from all of this. Jackie
Heidi

Wednesday, 15th April 2009 at 9:47 pm

Thanks, Jackie

Unfortunately, the 2 previous drains both stopped draining on their own, and were removed when they went dry. We don’t know why they stopped working, but the thought was that Mike was healing the inside end over and closing off. Why? that is the mystery! In both cases they flushed the tubing with saline, so maybe there is some other solution. The challenge now is to get the leakage to stop without further surgery. He has now lost a lb. for every day since surgery - 28. It is definitely noticeable now, but not the most healthy way to do it. Well, it would be nice if tomorrow’s procedure gets him able to eat again.

So, off to bed, I need to sleep!

Heidi
Heidi

Thursday, 16th April 2009 at 12:19 am

Hi Kim B

thanks for the offer - at least we are more comfortable at home (well not Mike so far) and Colin and I are working through this new challenge. However, if you wanted to make a visit to Mike, he is on the 3rd floor, Surgical North Pod A, room 9230, bed A for a few days more at least. He might just like to swap war stories with a fellow sufferer. Ironically, his blood sugars are just perfect, it is just the leakage from the cut into his pancreas that is causing the problems. I am not going to rush him home, and I don’t think our doctor is either, but I am looking forward to him bouncing back to life sometime along the way here.

Isn’t this spring melt a nice change? I see a few crocuses coming up where the snow has gone. Maybe we will have spring before July after all.

Heidi
Laura

Thursday, 16th April 2009 at 9:19 am

Maisy, If I was you, I would get a glucose monitor and check your sugar regularly thruout the day. I kept a log with the time, the reading, and what I ate and what effect that had. I was checking my sugar about 10-15 times per day. Then when you go see an endocrinologist, you have something to show them.

Marcus, well the good news is your wife did not suffer for too long before a diagnosis was made! That is the best you can hope for when it comes to these awful little tumors. It sounds like her 72 hour fast was very similar to mine which was less than 2 hours! There is tons of info on this site about questions to ask and what surgeon to choose. She will probably have an endoscopic ultrasound and or a cat scan to determine the location of the tumor before her surgery. Where are you located? What hospital are you considering?

Audra, welcome! I had an MRI which showed nothing as did many of us if you read above. I have never heard of anyone having an abdominal ultrasound to find these tumors. They are so small, I can’t imagine it would be effective. When you compare all the experiences above, it seems like endoscopic ultrasound and cat scan are the most effective techniques to locate the tumors. The fact that your doctor is recommending these tests begs the question as to how much experience he has with this type of tumor. If he is not very experienced with them, I would encourage you to find another surgeon. Good luck! (By the way, get a glucose monitor if you don’t have one already, if you check your sugar thruout the day, it is your best chance to keep your sugar up and avoid the scary episodes!)
Heidi

Thursday, 16th April 2009 at 10:02 am

Audra,

I agree with Laura on this one for sure. From what I have seen regarding ultrasound and insulinoma diagnosis, an external ultrasound would not be likely to find anything, but an endoscopic ultrasound (down the throat) is considered the best tool for localizing possible tumours. It is not fool proof either, but for my husband, Mike, and other sufferers on this blog, CT’s and MRI’s were not not successful at finding these small tumours. In Mike’s case, they identified 2 lesions on the back side of the head of the pancreas, but only one turned out to be a tumour, while the other was a cyst. Ultimately, it is usually the surgeon’s hands and eyes that are the final confirmation during the surgery. If you are in a small city, make sure you get yourself referred to a big city for the proper procedures. In Prince George (pop, 80,000) we have MRI and CT, but not the endoscopic US or the arteriographic testing equipment. And, while we have surgeons here, they are not the specialists who have the experience needed to deal with these rare problems. You need a pancreatic surgeon. For us the nearest specialists were in Vancouver and we have just come home from there after Mike’s surgery.

Maisy,

Again, Laura is right - keep a food diary and monitor your blood sugars regularly so you have evidence of the problems you are experiencing. In some cases, sufferers have encountered medical staff who are able or familiar enough to recognize the symptoms of this rare problem, but so many people we have encountered - nurses, doctors etc, have absolutely no idea and don’t take you seriously when you explain what is happening to you. We were lucky - we saw and internist in our Emerg who had seen this before and knew what it was. So, we were diagnosed immediately - the harder part was finding the blasted thing.

Read up, educate yourself, and fight for a better answer if you are not being taken seriously. Some members of this group have even printed out materials from here to give to their doctors as evidence of what is happening to them. Since this is rare you have to be the driver of this experience, and take charge of making sure you are being treated with sincere effort. It also depends on what country you are in, and how your medical system works. If you read this blog carefully, you will find names of doctors in different countries who have been very helpful to other sufferers and maybe you can get a referral to one of them if your own medical people are not giving you what you need.

PS, I have reactive hypoglycemia, and it has never, ever been as bad as what my husband has been through. I get lows, but after 30 years of living with it, I know what fixes it, and it is rare that I have anything other than mild symptoms for many years. Yours sounds a bit extreme for the reactive version, so keep investigating!

Well, I must head down to the hospital to see my dear husband, and hope that drain is put in soon.

Good luck to you all who are just joining us. It is a very ‘interesting experience’, but the support you will find here is amazing.

Heidi
Audra

Thursday, 16th April 2009 at 5:00 pm

Hi Maisy,

I think we could be twins except for the fact that I would not describe myself as an athlete or having trained for anything other than a Grey’s Anatomy marathon (or something like that). Your levels sound very much like mine. It is rare for me to be above 4 and if I am I usually dip back into the 3s quite quickly. While I knew I had hypoglycemia (though didn’t know the cause) I had one episode after having popcorn, coke, and a yogen fruz (again, it was a movie marathon). Within an hour, I felt psychotic. I had palpitations, was hot (ripped off my clothes), was crying uncontrollably, and couldn’t breathe. I checked and was 2.1. I also was treated for depression for over a year in relation to feeling tired all the time, easily crying, and feeling a lack of spark or motivation. My symptoms are always more pronounced pre-menstrually and I think my symptoms first developed after (or during) my pregnancy. Now it all makes sense to me. I hope you have an opportunity to get connected with an endocrinologist who can get to the bottom of things for you!

Laura,
Thanks for your thoughts. I was kind of wondering about the efficacy of an abdominal ultrasound as well. Now that I think of it, I think the secretary said “abdomen and pancreas”. I know I have to fast for the procedure so maybe it will be endoscopic. Let’s hope! The endocrinologist that I am seeing seems to know what she is doing. So far I have confidence. She came to Canada from Germany a few years ago. I will have my MRI on the same day and will see her for follow up a couple of weeks later. In the meantime, I am monitoring my blood. It’s funny though-during my 72 hour fast, my level dropped to 1.9 and I didn’t feel overly symptomatic. Mind you, it was in the middle of the night so I already felt like a stunned banana. However, I have been feeling symptomatic in the last couple of days and have been at 3.6 or so which seems to be pretty much my norm….but now I feel symptomatic. Go figure!

Heidi,
Thanks for your thoughts as well. You and your ‘dear husband’ have been in my thoughts. I hope he is on his way to recovery. Summer will be sweet with all of this behind you! I feel grateful to be in a city that has an endocrinologist. I’ll definitely advocate for an endoscopic ultrasound if that is not what happens on the 29th.

Thank you all for sharing your stories, experiences, and for all your support. I have named my insulinoma the “little bastard”. I also have the perception that I’m eating for two (me and the little bastard)!

Take Care.
Janet

Friday, 17th April 2009 at 9:36 am

Heidi,
Just to let you know you and Mike remain in my thoughts and prayers. I am sorry to hear of all your problems but feel sure you will get there in the end. Stick with it, and give Mike our bestest regards. I am sorry I have not posted lately but my lap top broke and i have only been able to catch up occasionally by using others computers! Hwever, I am now back online so should be around more.
TO A udra and Maisy,
WE all so much know what you are going through. Getting this condition diagnosed is one of the biggest hurdles of all, then locating the tumour it seems even harder, so it is long road. But we are all here to help each other so just keep on visiting the site and giving your stories as whilst it gives you an opportunity to sound off, others too ca learn from it. So take care everyone, love and prayers.

Janet
Jackie

Friday, 17th April 2009 at 5:01 pm

Audra and Maisy, I got so much comfort as well as information from staying in touch on this site. It was invaluable to hear from all that had gone before me. I did not feel as alone and I had more information to talk with my physician about. I wish you a speedy diagnosis and a quick resolution to all of this. It was awful having to deal with low blood sugar and it is great to have my life back. You will be in my thoughts and prayers.
Audra

Friday, 17th April 2009 at 9:08 pm

Thanks Jackie and Janet! I’ve spent lots of time reading posts on this site and it is very affirming to know that others have struggled with similar issues. It’s comforting to know that I’m not alone. I’ve been struggling with headaches and feeling like a stunned banana. I contacted the diagnostic imaging department today and was very disappointed to learn that the ultrasound I’ll have on the 29th is an abdominal ultrasound (not endoscopic). I’m now realizing that the likelihood of a simple laparascopic surgey with quick recovery is not necessarily realistic. Do most people end up in ICU following surgery? Thanks again for listening, everyone. My thoughts and prayers are with Heidi and Mike as well.
Jackie

Friday, 17th April 2009 at 10:10 pm

It depends on where the tumor is located. If it is in the tail of th pancreas you may be able to have a laparascopic procedure. It if is located in the head of the pancreas then probably not. But either way it is worth it. I was in ICU one day post op and mine was located in the head of the pancreas so it was a big surgery.
Heidi

Saturday, 18th April 2009 at 12:22 pm

Well folks,

the PG chapter of the worldwide Insulinomiac Club had its first meeting yesterday, when Kim B dropped by the hospital to meet Mike face to face. To say that it is amazing that 2 sufferers who live in a low population area (Northern BC), actually live in the same small city and within 10 km of each other, is an understatement. Thanks for dropping by Kim B., it was great to meet someone who actually understands this dear little illness.

Audra, I would stress again, that you will need to be a very strong advocate for yourself and will often have to lead your medical people to find the answers you need. The abdominal ultrasound will probably be of little value, so why waste time and/or money doing it. The CT and MRI have been the best 1st line of detection for most of our members, with Endo US being more invasive but very useful in detecting tumours that have not been visible with the first 2. Kim B told us yesterday that his tumour lit up like a Christmas Tree light during his CT, while Mike’s remained hidden until the EUS. They both had similar-sized tumours, but in different locations and that seems to have been the difference. I would urge you to agitate for a CT rather than the Abdominal US.

The laproscopic surgery only seems possible for tumours that are clearly identified, and in a ‘good location’. If your tumour is in the head of pancreas, it will be open surgery, because of the complexity involved. Based on the comments of other members of this forum, it seems that laproscopic is most possible when the tumour is in the tail.

The surgery process isn’t fun (neither are other major procedures, trust me) but the relief felt when you don’t have those lows the day after surgery is remarkable, according to my husband. I think the ICU is really just a precaution after a major surgery like this. Mike was into a regular ward within 36 hours. They just wanted to make sure all was well, and he struggled a bit during the first day.

Well, must get some chores done around here, then head off to visit my dearest. It’s cool today, 2.2 C, and we had hail and thunder last night. So no more cleaning up the yard today. Most of the snow in our yards is gone, but there are still piles of it by the road, where the snow plows put it during the winter. I hate this part of spring! I want green!

bye,

Heidi
Audra

Saturday, 18th April 2009 at 1:17 pm

Happy Saturday!

It is truly amazing to have two insulinoma sufferers in such close proximity! Are there any other sufferers out there from Saskatchewan? Heidi, I’m with you in needing to see something green. I may need to venture to a greenhouse today to get a fix. Take Care.
Anne

Sunday, 19th April 2009 at 6:55 am

Please help. My partner has become so low now waiting for the 72 hour test that never happens on the British NHS. i presume this is the chemicals kicking in and producing this effect. Is there anywhere that does this test privately and how much would it cost? I feel time is of the essence
Angie

Sunday, 19th April 2009 at 7:17 am

Anne

Without knowing where you are or how long you have waited its a bit difficult but go back to your GP and insist something is done. This is considered a life threatening condition. If you are near London get referred to Barts as they are fully clued up. If not find a hospital that has experience with insulinomas. This is very important as most hospitals do not know what they are dealing with. I went to Barts and within two weeks i went in for my 72 hr test.

Good luck any questions just post!

Heidi
All my thoughts are with you and Mike through all this, all my best wishes for his safe recovery.

Audra
Dont be fazed by ICU, the more care and attention you get the better. Always better to be safe than sorry! I was in HDU (high dependancy unit in UK) for a day to carefully watch all my signs then moved to a surgical ward for two weeks in the end. Mine was open surgery as I had the tumor in the head near a duct - was thought to end up with a whipple but escaped that joy!

Good luck and hello to all.

Angie
Anne

Sunday, 19th April 2009 at 7:59 am

Angie,
Thank you. We are in the Midlands so quite a long way from London . Already been waiting several months for the test. Everything up here slow to stop. We have insisted and insisted to no avail. That’s what is so depressing. Without the help of the GP and consultant (who both appear very willing to help) there can be no progress. Their hands seem to be tied by lack of facilities
Anne

Sunday, 19th April 2009 at 8:02 am

Is there a consultant who we should ask to be referred to at Barts?
Anne

Sunday, 19th April 2009 at 8:06 am

Is there a consultant who we ought to ask to be referred to at Barts?
Angie

Sunday, 19th April 2009 at 8:51 am

Anne
Dr Drake at Barts was my consultant who is one of the top guys in the endocrine department. It might help to ring them yourselves to get any info. A phone call could make all the difference - it may not be possible but who knows!
At least you would have tried.

I dont have the tel no in front of me but its “Barts and the London”.

Good Luck, if you get through to him and hes ok tell him I put you in touch to get some information, Im seeing him in june for my follow up! Mind you its two years now!! Im probably way down on his list!

Angie
Audra

Sunday, 19th April 2009 at 9:26 am

Hi All,
Thanks for your thoughts, Angie. It’s great that you were able to avoid the Whipple! I’m not sure why the thought of ICU freaks me out. I guess it’s not so much ICU as just knowing how major the surgery could potentially be and the risks and complications that could accompany it.

Anne, I hope you are able to connect with the appropriate resources to get things moving along for your partner.
Jane

Sunday, 19th April 2009 at 12:27 pm

Anne,

I had an insulinoma removed in May 2007 at Queen Elizabeth’s Hospital in Birmingham by Mr Mirza. Once I got referred to him by my local hospital things sped up. In fact he even rang me to talk to me at home after work when I had not turned up for an appointment for the Endoscopy which was to confirm the site of the tumour before the operation. (The appointment for it had been arranged so quickly that I had the letter with the date after the appointment!)

Like most of us, getting the diagnosis was the problem. The ward at the local hospital where I went for my 72 hour test had not got a clue why I was there or what to do. Even when the consultant explained it all to the nurses they said they couldn’t just watch me while my blood sugars went so low as it was too dangerous. They were relieved when it was called off after 12 hours because they had the results they needed from the blood tests.

So, Anne, you must question everything even though you may feel you are being a nuisance. Ask when to expect appointments. Don’t be afraid of mentioning the information from this site. I know that the doctors, when I first was taken in to hospital unconscious and could only be revived by massive doses of glucose, looked at the internet. I found all but one (local) doctor very good, informative, caring and very, very interested! This sole doctor did seek me out when told that I DID have an insulinoma to shake my hand and apologise (sort of!)

Once I was at the QE the care was good, waiting times negligible and they knew what they were doing. I, like everyone, else am happy with the result. I feel better than I have for years.

Heidi

It is not good to hear of Mike’s difficulties post op. I once passed through Prince George on my way to Prince Rupert. Little did I know then that it was the insulinoma capital!! Nevertheless, it is a very beautiful part of the world. Good luck.

Jane
Janet

Sunday, 19th April 2009 at 2:29 pm

Anne
It sounds like you really need to make a nuisance of yourselves. I am surprised that there is such a wait for the 72 hour test. My first diagnosis took ages but the medics did work really hard to try to speed stuff up. I live in the Midlands. My op was done at Dudley Road Hospital which is now City Hospital in Birmingham, but I now go to Selly Oak to see the consultant for my further insulinoma treatment as I have a recurrence. Hope you get something sorted soon as it is so horrible this condition. We all know wht you are going through. Chin up! Love to all as my thoughts remain with you all.
janet x
Anne

Sunday, 19th April 2009 at 2:34 pm

Jane,
Please could you give me a first name for Mr Mirza or contact details if you have them. Thank you so much
Heidi

Sunday, 19th April 2009 at 7:17 pm

Well, another day, another problem. The assorted cultures have come back from the lab finally, and Mike is positive for VRE, Vancomycin Resistant Enterococcus, which means he is in isolation at the hospital. He had been on ’screening’ while the labs were done, which involved no contact precautions, but now he is in a single room with strict precautions including gowns and gloves. The best part of this, is he is now away from the old man roommate, who has been having a hard time adjusting to being in the hospital, so maybe he will get a few more hours sleep per night. So he is now in Surgical North Pod B, room 3227, on 3rd floor. He can still have visitors, you just have to get covered up and no hugs or kisses!

This bacterial infection is hard to treat, but not necessarily a problem for Mike, rather he can transmit it to people with low immunity who cannot tolerate it. So he is not in danger from it at this point, just infectious. It certainly is inconvenient though. He has been taken off IV today and should be getting back on a regular diet soon. The surgeon is going to do a CT scan earlier in the week to check on the drainage, and some type of scope at the end of the week to check out the leaking in the pancreas. So now we wait and see how these goes. Otherwise, he is feeling good, but has very little strength after being hospitalized for so long now.

Jane, welcome to the club. Did you go to Prince Rupert for the ferry trip to Vancouver Island? When the weather is good, that is an amazing trip. We did it 5 years ago and it was marvelous. This is such a big country, isn’t it!

Thanks!

Heidi
Anne

Sunday, 19th April 2009 at 11:41 pm

Has anyone experienced swelling feet and hands after the slighest bit of exercise as part of this condition?
Laura

Monday, 20th April 2009 at 10:05 am

Anne, I have 2 ideas for you. First, my endocrinologist did my 72 hour fast at his office. I got there at 8am, (my husband had to take me because I could not eat before so I knew I woudl be low before I arrived), I brought my blood tester with me. when I got there he drew blood and I checked it myself. Then he had me sit there and check my blood every 30 minutes. He also did a couple other blood draws himself. It was done in 2 hours as I continued to fall. Maybe suggest to your doctor that you could do this type of test and skip the official admit to the hospital 72 hour fast.

Second, you should get a tester to have it for yourself. Even if you get a diagnosis, it will take time before you have your surgery. I used to test my blood 10-15 times per day, but at least doing that made me a little more in control.

Good luck!
John

Monday, 20th April 2009 at 10:29 am

Hi all - and especially to Anne with your questions and doubts - and Heidi with Mike’s on-going troubles.

My heart goes out to you all!

Anne - I never had swelling feet or hands. Insist on getting to the bottom of this thing now. My experience with the 72-hour fast thing was this. I turned up at the hospital and was CT-scanned first, starving hungry and fearful of collapse. Then I walked over to the clinic for the 72 hour job - a day-bed clinic only, comfortable and clued up - where I expected to ‘go off’ soon but didn’t - for over four hours! Amazing how long we can control these episodes, isn’t it?!
When I did, it was magnificent! I was incoherent and my wife tells me I got amorous with all the nurses! I also hid under the blankets. I remember nothing of it. Then they finally fed me and got me back before sending me home. All this was still under the National Health and was enough to confirm their suspicions and get me operated on privately, within a few weeks - and get me cured.

I realise that, being in the capital city (London) opened more doors more quickly. But I also begin to suspect that the doctors here in he UK have more experience with this little tumour and all its horrors. They actually discuss cases weekly and have conferences and meetings about patients, comparing notes and running their ideas by their colleagues. You over there must demand the same. I have actually discussed this varying experience with my endocrinologist and my surgeon - and they are well aware of the patchy shortcomings Stateside.

Mike - get strong again, please. It’s been too long now!

John
Heidi

Monday, 20th April 2009 at 2:30 pm

John, thanks, we are all holding our breath these days….

Anne,

Mike’s 72 hour test lasted less than 1 hour, since we went down to the hospital’s blood lab first thing in the morning, he had not eaten since bedtime the night before, and he tested himself upon arrival, and was already 2.7 (49) and they called the local specialist, who told the lab to proceed immediately as he was already in the ‘zone’. The tests were sent directly to a lab in Vancouver which is our major centre, as our local lab did not have the procedures to even do some of them. Once the blood draws were done, Mike drank OJ and had a couple of granola bars, and we stopped off at a McDonalds (very rare for us) for a egg sandwich. Once topped up - he was fine again. Those test were done for the endocrinologist in Vancouver, since we don’t have one here.

When Mike was admitted to the emergency apartment originally, the same specialist did a 72 hour test after they had gotten Mike stable with food and a glucose drip. Then they disconnected the glucose and left him and it took about 14 hours to bottom out at 0.7. During this test they took blood every two hours and did finger pricks every 1/2 hour to monitor him. The entire staff were amazed that Mike was still conscious at 0.7 (13) but he was still holding conversations with the nurses.

As to exercise, Mike rapidly developed the inability to doing anything physical, since it would bring on a low very quickly, and he gave it up. His work (teaching) involves being on his feet and he was always complaining about sore feet, but that may also have been from the rapid weight gain he experienced with the increased food needs.

Get tough, and start demanding you get the test done. If you don’t have a glucose monitor, get your hands on one and start tracking the results - it is a pain, but vital information for the medical people you are dealing with and good evidence you are needing help soon. Just agitate and get noticed - ask for your rights. I will say that here in Canada, where our medical system is more like the UK than the US, we did find that our medical people were working quite hard behind the scene to orchestrate things for Mike. It was not obvious at first, but suddenly all the pieces fell into place and we got into the right place.

Thanks,

Heidi
Anne

Monday, 20th April 2009 at 2:42 pm

Thank you all for all your support. Its good to hear so much useful information and to gain strength from being part of such a caring community even though i am new to this group. I will fight with renewed vigour now.
Rhonda

Monday, 20th April 2009 at 11:35 pm

Hello everyone. I have spent the last few days reading almost every post on this site. I am a 31-year-old with a 16-month-old son. I have had severe hypoglycemic symptoms since three weeks after I gave birth to my son. I saw several specialists, including an endocrinologist. I was given a glucose meter and diligently checked my blood sugars (oftentimes in the 30s and 40s and sometimes no number because it was below 20). I did a 72-hour fast that included a low of 37 within a couple hours of being admitted. Unfortunately the results were considered normal based on my insulin level also being low. After the fast, my endocrinologist communicated with me only via phone and did not order any blood work or other tests for the rest of the year.

A year later (this past January) I stopped breastfeeding and reported my low numbers as usual via phone. My endocrinologist redid the blood work and finally ordered my first CT scan. There was a large 22 mm tumor in the head of my pancreas. I had the Whipple procedure on March 9th. I was in the hospital for two weeks. I had minor issues (such as allergic reaction to pain meds) but no major complications. I was not able to eat or drink for 10 days. My recovery at home has been good and pretty fast.

I have a few reasons for sharing my story. The primary one is to give a personal account of a Whipple and let people know that while it is serious it should not be dreaded.

Another reason is that I live in Northern California and would very much like to meet up with people from this site. A few of you have mentioned Santa Monica. I would be willing to travel down there some weekend for an insulinoma get-together.

Finally, once I am fully recovered I would like to embark on my second pregnancy. I am eager for experiences and advice regarding timing of pregnancy after surgery.

Thanks for reading this!
Rhonda
Angie

Tuesday, 21st April 2009 at 2:35 am

Heidi

Just read about MIkes 72 hr test! Normally a reading of 1 or lower and you are in a coma so Im not surprised the hospital staff were shocked that he was still conscious! My 72 hr test I had to wait for two results below 2 - 1.9 and 1.6. My normal count was 2.5 generally. My lowest reading when I checked my blood regularly was 1.6 and I felt “light headed” at that time. I believe when you have had this condition for some time your body can cope with very low counts until you push it over the edge, eg exercise!

Anne
Heidi is right about being tough - shout loud and make a fuss its the only way to get things moving! And I have said before know your information - find out everything, ask everything and ask again. If you think its not right shout!!

If youve read any of my posts at the beginning you will have read they tried to put me on an insulin drip before my op!! Very very silly doctor hadnt read my notes!

All the best Angie
Janet

Tuesday, 21st April 2009 at 6:41 am

Hi, Its amazing how some of us are still conscious on such low readings. I think for some of us whose bodies have got used to functioning on such low blood sugar. I can imagine how they would be surprised. I have been still known to be walking round at 0.9, confused however! The lowest reading was 0.4 when I was in a fairly deep coma after falling into a coma on a bus and taken by paramedics to hospital. Hope everyone on here gets sorted soon, its so horrilbe for those recovering with all its complications and those awaiting diagnosis and tests. love to all.

Janet x
Heidi

Tuesday, 21st April 2009 at 9:22 am

Hi Everyone,

Just so you know, Mike’s blood sugar was 5.7 yesterday - so the surgery was a definite success! It’s the cure that is trying to kill him! He started vomiting again yesterday and he is having a CT scan this am to see if the fluid is building up again. His drain has stopped producing after 4 days (this is a pattern he has developed) and now he is getting sick again. So round 4 has commenced. I just don’t get it! Later this week, they are also doing a scope to take pictures of the pancreas wound to see what they need to do to fix the problem. Give me strength…..

Janet and Angie, one of our doctors told us that surviving lows without losing consciousness was a sign the problem has been developing over a long period of time. It is the sudden changes in life patterns that sets off the warning bells and when people collapse. For Mike it was changing his diet to reduce calories and lose a few pounds. Little did we know that the weight gain was a symptom of a much bigger problem.

Mike is an upbeat kind of guy and he is still optomistic that he will get through this and go back to being a healthy person who never need a doctor. His current mantra is “no more blood tests or IV’s for at least 10 years, please.”

Well, must head out to see what is happening at the hospital today.

Heidi
kimb

Tuesday, 21st April 2009 at 9:06 pm

Howdy all- sorry to hear mikes still in the hospital- It was good to meet him but I hope you did not feel to uncomfortable having a stranger in your room ( the nurse thought I was a little weird)but oh well! you and mike take care and I hope you can be done with this soon! Kim B
Heidi

Tuesday, 21st April 2009 at 11:59 pm

Tomorrow is Mike’s ERCP procedure (Endoscopic retrograde cholangiopancreatography). What a mouthful. “Through the endoscope, the physician can see the inside of the stomach and duodenum, and inject dyes into the ducts in the biliary tree and pancreas so they can be seen on x rays.” So I am assuming that they are looking for damage to Mike’s pancreatic duct.

Jackie,

Is this the procedure they used to try and put a stent into your duct? I recall that you had several attempts but can’t find any description of just how that was to be done. Morbid Curiosity on my part, since I think Mike might have the same problem. He has been vomiting again for the last couple of days, so the fluids are definitely building up again. He still has the drain but it is not doing anything right now. We are at week 5 now on Thursday, so there is something not working that is for sure. Of course, I always seem to miss the doctors’ visits, so I never get to ask my questions. This would be fascinating, if it wasn’t my husband they are experimenting on!

Heidi
Jackie

Wednesday, 22nd April 2009 at 10:24 am

The ERCP is the procedure they used to attempt a stent placement. I was sedated through the entire procedure. They do inject dye to watch the pancreatic duct and they can find the area that may have a leak. They took really neat pictures too. They got my first one in but it was not long enough to cover the injury site. The next two were unsuccessful. On the 30th will be another attempt because of a narrowing at the site where the duct healed and they want to try to dilate that area. One risk is developing pancreatitis after the stent attempt. I got that with the first one and had to take antibiotics and with the next two attempts I just took antibiotics immediately as a prevention. After the test was completed and I talked with the physician I got to sleep off the sedative for the rest of the day. They were really good naps.
Marcus

Wednesday, 22nd April 2009 at 1:02 pm

Laura - Thanks for your response. We live in a small town in South Carolina. We saw the surgeon and had a CT scan on 4/10. The tumor showed up and is on the very end of the pancreas. The Dr. said he is 95% sure he can do this laparoscopic. Her surgery is 5/8 in Greenville S.C.

Heidi - I’m sorry to her you and Mike are having such a tough time. I’ve only thought about my wife’s surgery and nothing about the recovery. I hope all is well soon and you both get back to a “normal” life.

To Anne and everyone else at various stages of diagnosis and treatment, hang in there. I hope to write back to all of you in just a few weeks with my wife on the recovering side of this disease.
Jackie

Wednesday, 22nd April 2009 at 3:13 pm

Marcus, best wishes to your wife and to you as you go through the surgery. It will be wonderful for both of you when she is back to normal glucose levels. It is so wonderful and worth all the hassles. Please keep us posted.
Kim

Thursday, 23rd April 2009 at 7:15 am

Heidi, I am so sorry to hear that you are still dealing with this. Thinking of you and hoping for resolution soon.

Marcus, I am surprised that your endo would dismiss a high proinsulin reading. It is so interesting to hear the various ways people get to their diagnosis. Best of luck to you guys. Keep us posted.
Monique007

Thursday, 23rd April 2009 at 3:03 pm

Hello all. I have been sick for the past 15 months with horrible hypos. I am being screened for an insulinoma and doing the fasting test this Saturday. What made it really difficult for me to find a good doctor who took me seriously was that I am diabetic. But since 15 months ago I have not had one high blood sugar and had to go off all of my diabetic meds and before it all started my blood sugar average was around 260. Then suddenly I began gaining weight and could not keep my blood sugar up at all. I remember eating and one evening being able to get my blood sugar up to 111. Because of that I happily thought that I could take a quick walk around the block. I didn’t even make it around the corner and I was at 45. Another time at my docs office I was below 30. So I feel dizzy, have headaches, feel like I am really spaced out all the time almost like I am really drunk, extremely weak, and get hit by these lows. I also started having issues with anxiety and depression becasue of all of this. By the way I am a 27 year old female in Las Vegas, NV :)
Audra

Thursday, 23rd April 2009 at 8:36 pm

Hi Everyone!

Hi Monique! Sounds like you found a good doctor who takes you seriously and that is an excellent start! It’s interesting that you experienced such a sudden change in your diabetes-glad that you will be having your fasting test in the near future. The symptoms you describe also sound very familiar even the anxiety and depression. I’m sure you’ll have some answers after your fast-good luck!

Hi Marcus and Heidi, I must tell you how much I rely on my husband’s support as I struggle through symptoms and the anticipation of surgery. I know how much he worries. Spouses are so very important and you are both obviously very attentive and invested in your partners’ well-being. I truly commend you both and believe it’s important for spouses to feel supported. It’s great that you have found this forum. I do hope Mike is moving toward healing and that his ERCP went well. Someday soon he will be free from bloodwork and IVs!
Heidi

Friday, 24th April 2009 at 7:12 pm

This has been a confusing week. Earlier in the week, the surgeons thought Mike’s pancreatic duct was possibly still leaking fluids and they were planning to do an endoscopic procedure (ERCP) to put in dye and take x-rays to have a look. If there was a leak they would put a stent inside the pancreatic duct to close it off. However the same day (Wednesday) they also did a CT scan to review the fluid pocket around his stomach. This was done first, and the surgeons reviewed it and decided that there was no leak, rather the fluid was from an abscess. However, they didn’t communicate this with us clearly, just cancelled the ERCP and just arranged to try and get the fluids moving again with drain flushing. So we haven’t had the full story until today.

Poor Mike is in a holding pattern, they flush and drain, and he sits feeling frustrated, lonely and despondent. There will be another CT next week to see how much of the fluid has been removed. The fluid is a thick goo, so it is not moving well so far, and they may ultimately decide to open him up again to get at the abscess. Otherwise, Mike is in relatively good condition - he has always been very healthy up til now and that is apparently standing him in good stead. The doctors don’t want to do the drastic step of further surgery if they can just wait it out, but it is certainly hard to wait and wait. So that is what we know today!

Audra,

I have to admit my concern and involvement is part of my personality - I am a ‘registered’ control freak! I need to know about everything that affects me and my family and I don’t like being out of the loop on anything. The doctors are frantically busy in this town - we have insufficient medical personnel for the size of our population and our hospital is always overburdened. I do appreciate they are working hard and maybe they don’t always tell us every detail, but they do care.

Heidi
Jackie

Friday, 24th April 2009 at 8:06 pm

I can’t imagine wishing for a pancreatic leak but maybe that would have been easier for Mike to deal with. I hate to hear he has an abcess and that there doesn’t seem to be a quick solution to all of this. My husband and myself talk about you both often during the day and you are both in our thoughts and prayers. Now that they know for sure that it is an abcess they can focus on the treatment. God bless both of you.
tatia batz

Friday, 24th April 2009 at 8:56 pm

Rhonda,
You are a brave women! After having and fairing so well after a whipple I might add to be embarking on a new endeavor of having a baby. I only had part of my pancreas removed the tail and had a horrible recovery. My heart goes out to you. I had surgery Dec 9, 2008. I have only been back to or almost to my normal self for the last 6 wks. I admire you for letting others know there is life after this condition is taken care of even if you are left with life changing challenges. Please keep us updated as to how you are recovering. Glad to have you join the blog.
Tatia
Janet

Saturday, 25th April 2009 at 5:02 am

Rhonda
Welcome to the site, it really is a great way of talking to others who do really really know just wht this condition entails. I know exctly where you are coming from and really pleased that another “inslinoma” has been stopped in ruining someones life. I bet it feels great to be “normal” again! I had a baby 12 years after my op, but I am sure I needn’t have waited that long. I had a normal pregnancy and my son was a normal forceps delivery. He was a healthy 8 pound 4 ounce baby. He is now 24! If I had listened to the doctors I would have had him terminated as i had other medical issues. However, my son was a perfect gift from God and despite being told he would would have health probelms , he recently has got married. I think you will know when your body is ready for another baby; no one knows your own body better than yourself, I have found this out after living through two insulinomas! Best of luck anyway to whatever you decide.
Heidi
I do hope you and Mike can stay strong; life certainly is dealing you both a very difficult time. My prayers and thoughts remain with you and Mikes doctors. Love to all.
Janet xx
Angie

Saturday, 25th April 2009 at 6:02 am

Rhonda

This is a message from Susie as she is having trouble with the unbound site! She lives in San Diego and wants you to have her personnel email address as she would love you to contact her. She also had a Whipple and is dying to talk to someone that has also had it for a insulinoma.

Susier@san.rr.com

Hope this is good for both of you!!!!

Angie

glad to be of service!!! x
Jackie

Saturday, 25th April 2009 at 11:09 am

I think I am having trouble with the site and being able to see all the postings. I did not see the initial posting my Monique007 or Marcus. I was wondering if all of you can see my postings. Let me know if you are reading this one. Thanks, Jackie
Rhonda

Saturday, 25th April 2009 at 11:37 am

Tatia, Janet, and Angie,

Thank you so much for welcoming me to this site. You do not realize how engaging and informative reading all of your posts has been. It has been quite an ordeal for me these past 16 months. However, getting a diagnosis and having the surgery have made such a difference in my - and my son’s - quality of life. Getting cured has also relieved a major burden on my husband.

I am looking forward to contacting Susie via email. Jackie, I can see your post.

Would anyone be interested in hosting an insulinoma get-together this summer in LA or San Diego?

Rhonda
Peggy

Sunday, 26th April 2009 at 5:28 pm

Welcome Rhonda,

I would LOVE to meet with you and Suzie!! And anyone else who is interested and able. (Pamela!) I live right between LA and San Diego. My house(though humble)is always open. Just let me know when.

I’m a little overwhelmed with all the posts, but I do keep up on everyones progress and I’m so thankful for how this sight has helped so many and brought us all together. It was a lonely disease before we were able to connect.
Heidi, both your husband and you are amazing people. Keep the faith!
Monique- the depression is the pit of the disease…KEEP
EATING!!
Susan

Sunday, 26th April 2009 at 5:37 pm

Rhonda,

May I ask where in Northern CA you had your surgery?

Susan
pamela

Sunday, 26th April 2009 at 8:42 pm

Hello everyone……. especially anne, marcus, audra, rhonda, monique, welcome to the blog, it so good to hear your stories and us all be able to relate in so many ways! Also so informative on a personal basis….. keep fighting!!

Heidi and Mike
i am praying for the once and for all recovery!! my everyday prayers are with you!

I am all for a party in L.A… or san Diego…. or even Santa Monica! I would love to help organize, plan, or help pay for some of the costs! that would be really exciting and so great to meet many of you! someone come up with a few more ideas… perhaps some dates, and then work from that!!

God Bless everyone!
pamela
Rhonda

Monday, 27th April 2009 at 1:11 am

For those of you who are interested in getting together this summer, would you mind responding to the questions below:

1. Of the Saturdays in June and July, which do you prefer?
6/6, 6/13, 6/20, 6/27, 7/11, 7/18, 7/25

2. Which city in California (LA, Santa Monica, San Diego) do you prefer?

3. House or restaurant? Lunch or dinner? Potluck or catered?

4. Would you be willing to host at your house and/or be part of the planning committee?

Please feel free to provide other suggestions or questions to the group.
Rhonda
pamela

Monday, 27th April 2009 at 6:53 am

Rhonda
great idea to get some headway on a party! I know many of us have talked about this for a long time and are so excited to meet one another! Like i said in previous post from last summer, i would love to help in any way i can to help arrange or throw the party.
For me, july 11th is hard because we leave the previous weekend the 4th on a week trip. All the other weekends are good for me.
I think depending on the head count would be wether to have it at a restaurant or if someone is willing to have it at their house. Maybe Peggy and Susie and those of you who live in California can come up with the best location to meet. How exciting! let me know what i can do!
Mike and Heidi … hope you are doing better, are thoughts and prayers are with you!
Pamela
Angie

Monday, 27th April 2009 at 7:05 am

HI Has anyone got a private jet I can borrow for the weekend and I ll come too!!!???

Angie
Heidi

Monday, 27th April 2009 at 9:37 am

Hi Everyone,

The situation is much the same, except a different surgeon (on-call shift change) visited Mike on Sat and Sun and was far more willing to talk about the situation than the one who has been on his case since he arrived in the PG hospital. Dr. P was not very forthcoming and Dr. A has explained much more.

The change in Mike’s mood is noticeable. Friday night he was very depressed and didn’t feel he was getting any help, now he feels much happier. Dr. A told him the CT of last Wed. showed that the pancreas was not leaking, but he did have an intra-abdominal abscess that had formed. They are cautiously optomistic that the flushing and draining is allowing the abscess to drain but they are going to check with another CT on Tuesday and make sure. Because he has had such a hard recovery they are not wanting to rush in and do further surgery, but will if things do not improve they way they want. He is on 2 antibiotics and a full fluid diet, which he is tolerating finally. The drain is working, albeit not quickly.

Dr. A told Mike he will be kept in hospital for another 7-10 days based on current factors - that bothered Mike, but he is starting to feel a bit better and now understands what is going on and why. Isn’t it always better when patients get the whole story, even if it isn’t always good news?

My stress level is down a bit today too. I wish I could bring him home now, but at least he is not getting worse, finally. I have really realized how much I miss having him here in the house. My job has often taken me away on business trips and he has always been here, now I am at home and he is not - just feels wrong.

Thanks again for all your thoughts and prayers - it is a good feeling to have knowledgeable friends near and far.

Heidi
Laura

Monday, 27th April 2009 at 9:41 am

Rhonda, welcome to the site! I had 3 pregnancies with my tumor and one without my tumor. I have to say, without is definately preferable! I gained much less weight for one. Also, when I got pregnant, my OB said that it was going to do horrible things to my scar, but the reality was it looks exactly the same now as it did before I got pregnant. I am actually still nursing my 6 month old daughter, wheras with the other 3 I quit very quickly because of the low blood sugar i thought nursing was causing. I only wish I had known then that it was not the nursing causing the problem. Good luck to you!

Laura
Anne

Monday, 27th April 2009 at 1:18 pm

Hi Everyone,
Things here still moving exceedingly slowly. may i ask advice from anyone who can help again?
My partner seems to have taken quite a down turn again (with still no sign of getting the 72 hour test). Symptoms at present are ragingly high blood pressure that cannot be brought under control, quite severe depression, palpitations that have become more severe, blurred vision but most markedly, severe sickness and a good deal of pain just under the ribs. (The gp says there is some inflammation inside the abdomen and would contact the consultant - we are still waiting!) Does this ring any bells with anyone? Does it sound like insulinoma or not?
Thanks everyone for your continued support.
Anne
Janet

Monday, 27th April 2009 at 2:32 pm

Can I travel in the private jet with you Angie, if someone has one!! LOL!

Janetin
Jackie

Tuesday, 28th April 2009 at 10:38 pm

Anne, the symptoms you discribed are not similar to what I had. They sound serious and I know you are frustrated with the pace of the medical team to diagnose this. I hope you find answers soon.
Marcus

Wednesday, 29th April 2009 at 9:37 am

Anne, Palpitations and blurred vision are symptons my wife had. The other symptons I have not seen. One of the things that helped move my wife’s diagnosis along was that she kept very thorough records of what she ate and her blood sugar readings. She also wore a monitor that tracked her blood sugar readings for 72 hours and when they took it off and plugged it in it made a graph of her readings. We insisted on seeing the doctor because she was eating exactly as the nutritionist told her and still having so many lows. Her food records along with the graph and her own records of her readings is what prompted the doctor to do a second round of blood test that came back with the same results of the first test. Since her pro insulin was high while her insulin and C-pep were normal he ordered the 72 hour fast. The thing is he was the only Endo within a 45 minute drive from us. Since insulinomas are so rare he’d only seen 1 case in 8 years. My point is the doctors aren’t normally looking for this but when the patient knows something is wrong keep insisting on test.
heidi and Mike, hang in there! Please keep me posted on Mik’e recovery.
Jackie, I can see your postings.
For us it’s 2 days to pre op and 9 days until surgery. My wife’s lows are more prevelant and every day she is in the 40’s several times. We can’t wait until this is over.
Everyone hang in there and keep sharing. This site was a blessing to me!
Anne

Wednesday, 29th April 2009 at 10:34 am

I hope all goes well Marcus
Jackie

Wednesday, 29th April 2009 at 11:03 am

Marcus, so glad to see you are in the final countdown. It will be worth it to not have to worry about blood sugars. My husband worried so much and I did not realize how much until after the surgery and I saw how emotional he was. It is hard on everyone.
Heidi

Wednesday, 29th April 2009 at 4:12 pm

And the bad news continues! Day 33 of Mike’s incarceration in hospital.

Mike is the poster child for how not to recover from this surgery. Yesterday’s CT confirmed that the abscess has not decreased. His perc. drain is also not functioning any more, so today’s plan is - more open surgery to get out the abscess. Mike started vomiting in the last 12 hours again as well. Apparently the abscess is located between the right kidney and the exit of the stomach to the duodenum and that the stomach is partially blocked by it. Hence the vomiting starting again.

Obviously Mike’s mood was very low today - he is exhausted, feeling lousy and emotionally wrecked.

So, I will update again once this next surgery has been done - now waiting again for a surgical time slot to open up.

Heidi
Kim

Wednesday, 29th April 2009 at 4:22 pm

Oh Heidi! I am so sorry for all that you are going through. 33 days! That is really awful. Things have got to get better soon. Glad you are nearer to home at least.
Jackie

Wednesday, 29th April 2009 at 6:11 pm

My heart aches for the both of you and I can’t imagine the blow to Mike to have to undergo surgery again. Our heartfelt wishes to Mike and hope they can schedule him soon and get him on the road to recovery. You are defintely due for good news.
kimb

Wednesday, 29th April 2009 at 9:59 pm

Heidi- Sorry to hear Mikes going for more surgey- Damm thats a tough one- Hope this clears it up- you guys take care-All the best-Kim B
Jackie

Thursday, 30th April 2009 at 1:16 pm

Hey everyone, I had my ERCP today and it was successful. The physician dilated the area of the duct that had the stricture and placed a stent. I go in three weeks to remove that one and get a different one that will stay in until it falls out on its own. Hopefully, that will be the finish line for me. I have been sleeping off the medication and I am a bit achy but other than that am doing great.
Peggy

Thursday, 30th April 2009 at 5:36 pm

Jackie,
I sure hope this stent does the trick, with no signs of pancreatitis!

Heidi,
Wow, unbelievable how much Mike has and is going through. He must be a very strong person. I know I could not have handled everything without my faith, knowing that I was in stronger hands than just the doctors. Keeeping a positive mind set can be so difficult. I will continue to pray for him. I imagine he is on a priority list for surgery??

Anne,
It sounds like more than just low sugar..I hope you can find out what is going on soon!

Rhonda,
Keep pushing for the get together! I’m trying to contact Susie. How about late June (after schools out) or mid July?
Anytime is a good time, though we are trying to plan a trip to Yosemite as well. We could always meet there! Who’s into camping? :)
tatia batz

Thursday, 30th April 2009 at 6:35 pm

Hello everyone,
Heidi,
I thought I responded bad to this surgery, Mike has me beat. I am so sorry he will need to be opened up again. I was able to get rid of my abses with a second drain, however they debated as to opening me back up agian if the abses/infection would not respond to antibiotics. I am hoping he will not need a new drain after they remove the abses. I bet his spirit is really low these days. Try to keep him cheered up and to look forward to the summer. He will recover. I am thinking of you and praying for his healing.

Jackie,
I am so glad to hear you are doing better. I hope this will be the last of the stints for you. You too along with Mike and myself know what it is like to not get better when you know you should be. Full speed ahead on the recovery!

Tatia
pamela

Thursday, 30th April 2009 at 8:46 pm

Heidi, Mike,
i am so sorry this has been such a struggle, and i know how discouraging it must be to have to go through another surgery, as if the torture of the disease and diagnosing it waasnt enough to have already gone through. I know healthy happy days lie ahead… keep your chin up, you all will be in my prayers.
Jackie,
you and some of the others that had additional problems after surgery give a big boost of inspiration and encouragement to those who struggle and have complications! I am so happy to hear of your good news….. and still hoping we can meet up soon!
pamela
Peggy

Thursday, 30th April 2009 at 10:52 pm

Pam,
When can you come out?? I asked Susie to call me so we can make a plan. It might be just a casual get together here in South Orange County, but…if you’d like to plan something bigger maybe we could do it at Doheny State Park! The fund-ing may be a problem for me, but I’m all into planning, now that I have half a brain again! Wouldn’t it be great to meet some people that are still going through it all. I know it would have helped me a lot to have some personal contact with people who understood what I was going through back then. I would love to do that for someone.
Where does Heidi live?

Anyone else close enough to meet?

Rhonda, susie would still like to hear form you.
Rhonda

Thursday, 30th April 2009 at 11:18 pm

Everyone,

Regarding the insulinoma get-together, Peggy suggested after mid-June so that school is out. Father’s Day is 6/21 so 6/20 is probably not good.\ for traveling. That leaves 6/27, 7/11, 7/18, or 7/25. Please continue to let us know which of these dates you prefer.

I hope that people will be inspired to meet up regardless of where they are in their insulinoma saga (i.e. searching for a diagnosis, waiting for surgery, recovering from surgery, recovering from recovering, insulinoma as a distant memory, etc.) Meeting face to face is likely to be quite beneficial for everyone involved - partners and kids included.

P.S. I emailed Susie a few days ago and will do so again tonight. Perhaps there is a problem with her email??
Audra

Friday, 1st May 2009 at 7:28 am

Greetings Everyone!

It seems like lots is happening for everyone.

Marcus, I’m thinking of you and your wife as you prepare for her surgery.

Jackie, woohoo on your successful ERCP. I do hope that is the last pitstop on your way to overcoming this disease!

Heidi, you and Mike are also in my thoughts. Although it may offer little comfort admidst all the struggle, I hope it helps to know that you have the support of so many on this site. We’re rooting for you!

Pam, Rhonda, Peggy, and others who are planning a get-together…have fun, how very awesome for something great to come out of this yucky disease that binds us together! I’d love to say that I can join you but the distance is a barrier for me. I’d also like to think that I may be having surgery this summer and I hope I”m not too far out on that hope.

I underwent both my ultrasound and MRI on Wednesday. I basically told the ultrasound tech that she was looking for a needle in a haystack. About 5 minutes into the ultrasound, after I had ‘enlightened’ her about insulinoma, she excused herself to talk to the radiologist. She quickly returned and said that both she and the radiologist recognized that proceeding with the ultrasound was virtually useless. This decision was made also acknowledging that I was booked for an MRI the same day. I became very ill the evening after tests. I’m guessing that fasting caused me to become ill. Although it was after eating that I became sick (vicious headache and nausea), I think the little bastard was rebelling against me for having starved him. I’m wondering if feeling brutal in that instanc relates more to things other than low blood sugar reading? I also felt that way during my 72 hour fast but at that time, my blood sugar was actually quite high (4). Anyhow, it’s a bit of a mystery. Now, I wait for the results of my MRI. I was thinking of Mike and hoping that like him my little bastard tumor would light up like a Christmas tree! I’ll see my endocrinologist on May 12th for the results. In the meantime, I’ll see my GP today regarding my elevated cholesterol and I’ll ask if he is aware of surgeons in our region that have experience with insulinoma.

Take Care Everyone!
Angie

Friday, 1st May 2009 at 11:41 am

Rhonda

Try contacting her through her face book as that seems to work. Ill try for you…..

Heidi

Have been reading all the problems with Mike - its really awful, it must be awful for both of you and very difficult to keep looking up - all our thoughts are with you both and hopefully he will turn the corner soon and you can put it all behind you!!!

Janet
We must do something about that jet you know!!! Its holding us back!!

Good luck to all.
Anne

Friday, 1st May 2009 at 2:22 pm

Thanks to you all for your ongoing support. We really need it just now. Getting absolutely nowhere. Finally managed to see a cardiologist today who was meant to check out the palpitations prior to seeing our endo bloke next Tuesday(still no sign of 72hour test). My partner was discharged!!!!! Nothing more the cardiologist could do for him he was told. Imagine how that makes you feel. No amount of creating a fuss made any difference. This really is so frustrating and dispiriting. How on earth do you make any progress with a difficult to diagnose complaint?
Heidi

Saturday, 2nd May 2009 at 4:20 pm

Hi again everyone,

A bit of good news!

Mike’s surgeon had another CT scan done late Friday afternoon, and confirmed that their concern about a small intestine obstruction having started to develop earlier this week is not happening. As well, the abscess/fluid build-up has decreased somewhat in size since last Tuesday, and they are holding off with the surgery now until they check with another CT later next week. They really don’t want to rush into surgery if time will take care of the problem.

Mike has started eating again today, small amounts but it is staying down, so far. (Mike’s original surgeon has gone away for a couple of weeks, and another is now looking after him and wanted to check out some more things before he did the surgery).

Wow, what a stressful roller-coaster this trip has been!

Heidi
Jackie

Saturday, 2nd May 2009 at 8:25 pm

Heidi, that is truly great news that surgery has been delayed. Let’s hope the antibiotics will do the job and he can go home soon.

I have had a couple of tough days. Yesterday morning I started having severe pain in the upper abdomen. The on call doctor said it is expected but it has been tough. Pain meds are helping and I have been on clear liquids. Not sure if it is a mild pancreatitis or gas from being pumped full of air for the procedure. This goes back to not being told all. No one told me to expect this and it really scared me. I called back to the on call doctor today and he was less than sympathetic. Right now I am sorry I got the stent put in. Hopefully tomorrow will be better.
Heidi

Saturday, 2nd May 2009 at 10:53 pm

Good Heavens Jackie,

you haven’t had an easy ride through your recovery either! The illness is horrible, but the cure is no picnic to get through.

Mike doesn’t know it yet, but his parents are flying from Vancouver on Tuesday for 3 days. They are 81 and 87, and don’t travel much anymore, but Mom called and said she just needs to see her 1st born in person. All this bad news has been driving her crazy. The funny thing is they have resisted all invitations to come see us up here for the last 10 years, saying it was too far and too complicated for them. This is true at their age, but Mike will find it ironic that the one thing that gets them to visit us up here, is his being sick. I look forward to them seeing him and being reassured that he is doing ok despite the challenges.

The good news has been that before this illness developed, Mike was a very healthy man and his overall stamina has served him very well on this journey. We are hopeful that his health re-asserts itself and he finally wins this battle and returns to a completely normal life.

Hey California girls, would love to join you in June/July, since I am on the West coast as well, but I do think I will still be nursing my invalid for some months to come.

Heidi
Angie

Sunday, 3rd May 2009 at 4:56 am

Jackie

I had a lot of abdomen pain after my op. The pain in the first few weeks was definitely air and it was awful. I then developed a really bad pain that felt like really really bad indigestion going over and over burning. I went for an emergency scan as I was sure I had fluid building up and got myself worried but they couldnt find anything. In the end - as they didnt give me any reason - my doctor gave me some strong indigestion tablets to take for a week then as and when but I took three and have never needed them again. I think i had a build up of acid and then worried myself into a state where i was just overproducing it and creating my own problem.

Not that I think this is much like your problem but just to say how painful trapped air can be - i thought i was having a heart attack at one point it hurt so much!! Sounds like Im a real hypochondriac but when you go through something like this anything sets you off!!

I hate unsympathetic doctors!!!

Good luck!!

Angie
Rhonda

Tuesday, 5th May 2009 at 11:25 am

Everyone,

WE HAVE A DATE for the insulinoma get-together! It will be Saturday, July 18th in the LA or Orange County area. Please mark your calendars. Partners and kids are welcome.

Location and Time: TBD. Let the group know if you would like to host it at your house or if you have any suggestions for restaurants.

Peggy and Pamela, You both expressed an interest in helping to plan so consider the three of us on the planning committee!

Rhonda
Susan

Tuesday, 5th May 2009 at 12:23 pm

To the members of the planning committee: Does anyone have Skype capabilities? I will be visiting my mom in Colorado that weekend, which happens to be my 40th High School Reunion celebration. My mom (Marilyn) came out here to California to have her surgery in November of 2007. Perhaps we could Skype you guys and get acquainted. I just printed out 400 pages of this blog, bound it, and included it in a Mother’s Day package that I mailed to her this morning. So she should be familiar with you by July ;-)

Susan from San Jose, CA
Heidi

Tuesday, 5th May 2009 at 4:52 pm

Dr. Appleby came into Mike’s room at about 12:30 and asked him if he wanted to go home? Mike said, “I think so.” “Well, you can go” was the answer! We came home with a large bag of supplies to continue to flush the percutaneous drain and we go in to see Dr. A next week for a follow-up and may be ok from here on.

Here’s hoping!!!!!!

PS. Mike’s Mom and Dad arrived this am to see him, and we think they were his good luck charm!

Whoopee!

Heidi
Heidi

Tuesday, 5th May 2009 at 7:01 pm

Dr. Appleby came into Mike’s room at about 12:30 and asked him if he wanted to go home? Mike said, “I think so.” “Well, you can go” was the answer! We came home with a large bag of supplies to continue to flush the percutaneous drain and we go in to see Dr. A next week for a follow-up and may be ok from here on.

Here’s hoping!!!!!!

PS. Mike’s Mom and Dad arrived this am to see him, and we think they were his good luck charm!

Whoopee!

Heidi
Heidi

Tuesday, 5th May 2009 at 7:02 pm

Ooops - posted that twice….

Heidi
Audra

Tuesday, 5th May 2009 at 7:13 pm

Hey Everyone!

I’m happy for those of you that will be getting together in July. That’s awesome.

Heidi, it’s great that Mike can sleep in his very own bed tonight and also great that he has not only your support but also his parents. Woohoo!

Take Care :)
Jackie

Tuesday, 5th May 2009 at 9:21 pm

Heidi, that is so awesome for you both that Mike gets to come home and his parents are there to celebrate with him. It could not be more wonderful. I can tell you it was hard the first day I got home. I was really scared of being on my own with the issues and all of it. It took a day or two to get steady again and be ok with it. I hated the hospital but it was kind of a security blanket. I finally had to take a deep breath and say “I can do this”. So happy this day has finally come.

Rhonda, not sure I can make it to the party in July. It is hard to get off after being off so long for the surgery. I was out 2 months. Will keep the date in my calendar and see what I can do. Great idea to plan this.
John

Tuesday, 5th May 2009 at 11:15 pm

Heidi!!! John here in London, following your story for so long now…

It must be such a relief for you and Mike to be back home. I can imagine that any inconvenience or pain or discomfort will quickly resolve and be as nothing compared with what you’ve been through - but do take it carefully…

Every little improvement will seem like a mountain climbed, the view improving with each new summit! I remember those first weeks after release, three months ago now!
And I am truly back to full strength and work, the little blighter beaten and cured.
One day it will all be in the past for you…

Love and good wishes to you - and to all of us in this exclusive little club worldwide. We share huge experiences.

John
Jackie

Saturday, 9th May 2009 at 9:23 am

Hi, to everyone and wishing all of you a Happy Mother’s Day weekend. After a long week I can say I am feeling almost back to normal after the painful post stent days. Blood tests confirm I did not have pancreatitis. So all is well and I have just one more to go on the 18th. What ever will I do when I have no pancreas details to deal with daily.
Peggy

Monday, 11th May 2009 at 9:48 pm

Jackie,

I’m glad you’re feeling better, just in time to enjoy your mothers day I hope. It’ll be nice to have other concerns, although they are more time consuming than I thought they’d be! It would be really great to have you come down for the get together…I hope you can make it.

Heidi,

Sounds like good news for Mike, finally! I’m sure it was nice to have his parents there, that’s a big trip for them!
Please try and join us if Mike is feeling better by then.

Susan,

I think I can get access to skype. That would be great, my mom really enjoys that. How did your mom like the blog packet? What great ideas!

Rhonda, Thanks for taking the initiative and setting a date!
I think I can make that work, if it works for everyone else. As I said, if we get together in O.C. you are all welcome here, unless it turns into a big event or something.
I talked to Suzie and she’s cool with that. We’ll discuss it with Pamela first of course.

John, that is not an understatement, we really do share a huge experience!

Peggy
Susan

Tuesday, 12th May 2009 at 1:27 am

Peggy,

That would be great if we could get the skype thing working. My mom is really enjoying reading the blog, and was very surprised when she saw my first entry about her! (Hi, Mom, if you read this on a blog update printout ;-) She can relate to so many of the things she reads here. It has been a year and a half since her surgery, and we can’t believe how fast the time has gone.

Please keep me informed as to how we may electronically join you at the reunion!

Susan
Heidi

Tuesday, 12th May 2009 at 8:10 am

HI everyone,

Mike is out of hospital one week, and so far so good! He is eating, albeit small quantities but has hunger and appetite. He has also been off the anitbiotics which they are suspecting he was reacting too and has not been vomiting since. His drain is still working with flushing and will remain in at least 2 more weeks. He gets another CT next week and then they will decide if it comes out. His weight is now 193 lbs, down from 235 the day before the surgery. He is starting to take a walk around the block this week and boy is he out of shape!

So we seem to have turned the corner!

Thanks again for all your thoughts and prayers - it has been wonderful having a support group out there in the atmosphere.

Heidi
Marcus

Tuesday, 12th May 2009 at 11:37 am

Hello Everyone -
Heidi - Glad to hear Mike is doing well!

Jackie - I hope all goes well on the 18th!

Wanted to let everyone know that my wife’s surgery on the 8th went very well. It was done laparoscopic and she got out on Sunday. She is spending a few days at her mom’s since that is only 45 minutes from the doctor and we live 3 hours away. Just wanted to make sure if anything happened she could get to him quickly. She’s had a little fever but the doctor isn’t worried. The worst part was the shoulder pain from the gas. We are excired about living a life not centered on feeding that tumor every 2 hours. Thanks to everyone for their prayers and good luck to all that still have a long road ahead.
Audra

Tuesday, 12th May 2009 at 5:35 pm

Hi Everyone!

Unfortunately, it has been a very frustrating day for me. The MRI and ultrasound that I had did not detect the little bugger. The endocrinolgist that I am seeing came from Germany a couple of years ago. She would like me to have a specialized MRI (although I think going to Germany is a bit of a stretch…)with a different type of contrast but we do not do that particular test here. She will be meeting with the surgeon and radiologist on either Thursday or Monday to discuss options. She did comment that the would not enter into surgery until the tumour has been located. I may have to go out of province.

Heidi, if memory serves, Mike’s tumour was found during an MRI. I had an MRI with contrast (although I don’t know specifics). Do you know if Mike’s MRI was done with a special contrast? I’d be interested to know who did his surgery as well as where. At least BC is still in Canada-I don’t think I”m going to have much luck in SK.

Marcus, it’s awesome to know that your wife’s surgery went well. It’s great that they were able to do it laparoscopically.

Jackie, it’s great that you are seeing the light at the end of the tunnel. The 18th is only days away!

To everyone else-take care, you’re all in my thoughts. I also thought the blog book gift was an excellent and good idea-very thoughtful!
Heidi

Tuesday, 12th May 2009 at 11:39 pm

Hi Audra,

Mike’s tumour was not found by MRI or CT, or the calcium stimulation arteriogram either. It finally showed up during the endoscopic ultrasound done in Vancouver. Based on that they told us they saw two tumours, but during surgery one turned out to be a cyst and was not removed. His tumour was 1.9 cm on the back of the head of the pancreas and proved hard to find and hard to rescection during surgery.

Mike’s surgeon in Vancouver was Dr. Charles Scudamore, of Vancouver General and BC Cancer Clinic. He is a Hepatobiliary tumour specialist and does only pancreatic, gall bladder and liver surgery, including transplants. He seems to have a very good reputation amongst medical staff and patients. He also had a good team of resident specialists who work with him and we never felt alone. Mike did have post-surgical complications (which have not been very much fun), but that can happen to anyone. You definitely need a pancreatic specialist to do your surgery - we live in a community of 80,000 and were strongly recommended to go to the big city. SK has less population than Greater Vancouver. I would check out the surgeons in Alberta too, since they are a bit closer to you.

Good luck - it does take time, but getting a firm location of your tumour is a key feature of planning for the surgery and having the road mapped out is so important. You will find the right team, just do your own research and check out anyone who is recommended to you. Talk to nurses in their hospital - they always know the good doctors. I have found doctors don’t talk about each other, but nurses are not afraid to say if they like someone’s work.

Heidi
John

Thursday, 21st May 2009 at 3:57 am

John here - London UK

Audra - has the latest scan gone well and has the tumour been located? That is so important and so thrilling, if and when it does! Then you and they know the enemy and can plan the attack. When my scans came back negative, I felt really strange, disappointed! - but within hours I got a call to say they had missed it! It was there, mistily, barely visible.

More scans, more delays - but then it was operated on - and I am fine. The cure is absolute.

I hope Mike’s good progress continues, Heidi - enough for anyone to have suffered, surely!

To all, pre and post operative insulinomiacs - raise a toast and cheer yourselves and ourselves. We are a bit special… and we are very very lucky people - eventually!

John
Audra

Thursday, 21st May 2009 at 4:59 pm

Hi Everyone!

I’m going to try to respond to John’s recent post. I tried, on two occasions, to respond to Heidi but my posts vanished.

Thanks John. So far, there have been no further scans. My endocrinologist is supposed to be meeting with the surgeon and radiologist to discuss options for locating the tumor tomorrow. I suspect that I may have to travel out of province. As Heidi suggested, I hope that Alberta will be an option. Should that be the case, I anticipate 5 hours of travel to arrive at a much larger centre that would have more diagnostic ability (I think). I’m glad that you are well-it’s encouraging to hear success stories.

Heidi, I hope that Mike is progressing toward a full recovery. Thanks for your info.

I’ll provide an update once I know more. Until then, I wish everyone well!
Jackie

Thursday, 21st May 2009 at 5:58 pm

Audra, I wish you well on your visit tomorrow. It has to be so frustrating not to be diagosed and moving toward a cure. I did read on line that some people have to have an exploratory surgery in order to find the tumor. Some are just really hard to find.

John, you always are so uplifting. It is a celebration once you are free of this dread condition. I had my final stent placed on Monday and did not have any post procedure pain this time. What a difference from the last one. They had to dilate the stricture a bit more and the pictures show a normal duct now. I see the physican in a month to see if this last stent migrates normally out of the duct. It should be expelled in about 2 weeks. I can’t believe I am at the end of this and can just think about getting thinner and stronger. Hurrah!!!!
Heidi

Thursday, 21st May 2009 at 9:34 pm

Hi everyone,

Audra, the travel will be worth it to get to a major centre where they have experience with these devilish tumours - just wait, it will happen.

Jackie, the end is coming soon now. You will feel better and life gets easier based on the postings of those who have gone before on this blog.

As to Mike, he is feeling quite well, although dreading yet another CT scan tomorrow - but it is in aid of determining whether the doctor takes out his drain on Monday. The drain continues to be uncomfortable and he is very hopeful it will be gone soon. He is eating everything, but small servings and his appetite is growing daily too. He has dropped to 189 lbs now (from 230 ) and his cheekbones have reappeared. Its just lovely to see them again too.

Well, more news next week,

Heidi
Audra

Friday, 22nd May 2009 at 7:21 pm

Hi Again,

Thanks so much for your thoughts and support-it truly makes this all a little more bearable. Unfortunately, the meeting did not take place today. I was told that the surgeon was called away to an emergency. So, I was informed that they would try again next week. AAAaaargh! I feel so stuck-I am so intent on hearing some news of progress toward surgery that I struggle to get through a day. I think I’m going to have to push myself to continue to do the things I used to do like exercising. Although my energy levels are not great I’m hoping some activity might kick start me into something other than fixating on progress that is not happening. I may limit the number of times I check my blood-it probably doesn’t help that I fixate on that, too! Anyhow, enough about me.

Jackie, it’s awesome that you are at the tail end of your insulinoma journey. How the heck do you expel stents? I guess I may be picturing the stents to be something like straw-sized. Woohoo, you have normal duct!

Heidi, I hope Mike is able to have his drain removed on Monday and be able to celebrate being tube free. Wow, that is a tremendous weight loss. Hopefully, he is feeling strong. I can appreciate that he has been through a great deal and will need to heal for a while. I’m wondering, though, what his spirits are like. Has he re-engaged with life?

John, I agree with Jackie. You have tremendous spirit and it’s great to have you in our cheering section.

I’m hoping that Marcus’ wife is also doing well as she recovers from her surgery.

Take Care All!
Peggy

Friday, 22nd May 2009 at 9:29 pm

Audra,
Believe me when I say that I know how anxious you are! It’s good to push yourself to live as normally as possible in the mean time… but please be careful!! Nothing can drop you’re sugar quicker than exercising! If you are then be sure to monitor your sugars more rather than less. Right before and right after!

I want you all to know, though some of us do not post often we do keep up, you are all on our minds and in my prayers.

Peggy
Rhonda

Friday, 22nd May 2009 at 11:05 pm

We have created an evite for the first insulinoma get-together! Let’s share our experiences and celebrate our successes. We will meet for lunch at C & O Trattoria (www.cotrattoria.com) in Venice Beach (L.A.). Please bring your family. We have reservations for the outdoor patio. Hope to see you there on July 18th at 12 PM!

You can also click on the evite link below for details:

http://www.evite.com/app/publicUrl/ZCEETDWMYWOFHXLINJNT/insulinoma

Rhonda
Heidi

Saturday, 23rd May 2009 at 1:16 pm

Audra,

As Mike progressed in the illness, he found exercise of any sort would devastate his blood sugar even faster, and eventually couldn’t walk around the block without feeling weak. Ultimately, you will probably find that things are going to get harder to do, and you will want to conserve energy for those important events in your day - you cannot do it all! From diagnosis in Emerg to his surgery was April 17, 2008 to March 19, 2009 for Mike. However, we also know now that Mike’s ongoing fatigue and irritability for the previous 4-5 years were due to the tumour developing and his blood sugar getting more out of whack as time passed.

We knew early on what it was, but it took that long to get the testing done, as they failed to find anything in the various methods. Because we had to travel 800 km to get to the major centre to get the complex testing done - Vancouver - it also took time to get things arranged each time. So, your frustration with the hurry-up and wait is natural, but it does take time to get to the point of having the surgery.

Also, checking your blood more frequently may help, because you will be more assured you are in a good situation before you try to expend energy. Mike’s local doctor advised him to make sure he had tested his blood shortly before getting into the car to drive, as he would be automatically considered at fault if he had an accident and could not prove his sugars were good by having a detailed record. Anyway, you need to fixate on your blood sugar, it is how you need to be to keep yourself healthy and safe.

Eight weeks from his surgery, Mike is not normal, but there is more life in him over all. He has started to drive short distances this week, and this gives him a sense of freedom again. He is still not able to do very much, but he is improving, and that is all we can ask for at this stage. He has gone grocery shopping with me, vaccuumed part of the house, and done some chores, but he is really still just recovering so it will take a while. He is enjoying watching DVD’s of tv shows and movies, and is back to reading his beloved comic books.

So, life is getting back to normal, but not quickly.

Have patience and give them time to help you - as frustrated as I was during the process, I did eventually discover that they were not ignoring us, it just takes time to get these complicated things done. And they are very concerned that they have all the right info before they start cutting you open - it is not an easy surgery and the prep work is important to make sure it goes as well as it can.

Bye for Now,

Heidi
Sahana

Monday, 25th May 2009 at 6:55 am

Hello everyone..
I’m a 22 y.o girl recently diagnosed with insulinoma through the usual indicators.. my surgeon says that i would most probably require a whipple procedure and pancreatic resection. All this sounds REALLY terrifying to me! I read through most the comments here, yet to go through all, but i am just scared witless! And though my doctor gave this booklet about the whipple procedure, reading about the post-operative stuff made it even more scary for me..and i’m trying not to show it cuz my boyfriend is even more nervous about it all.. I felt that hearing from someone who has actually gone through it all is much better than reading about it from a booklet or from the doctors.. Much obliged if someone could allay my fears! :S

Sahana
John

Monday, 25th May 2009 at 8:22 am

Sahana - welcome to this site where we have all shared so much and continue to support and help one another, new and old.

Of course you are scared. We all were. This tumour is so rare, so difficult to locate - but so treatable once located and proved. You are already there! I was terrified at the prospect of the full whipple and was warned that that might be the only solution. They really can’t say until they’ve gone in.
I was hours and hours in surgery, my wife and kids sure that I had been whippled - but I wasn’t. I had a sort of halfway house thing. Deep surgery and removal of a bit of pancreas - but nothing else. I felt grim for only a few days. Recovery went well after an initial setback with an abscess.

Some people on here have had far more stuff to put up with - others have gone through it easily. But all would agree, I am sure, that the cure is worth the pain. Getting your life and sanity back… must be worth a bit of anxiety.
Read on and take strength from others who have been there. You are so young, too - that must be to your advantage whereas I am an old guy of 60!

Good luck - and keep us posted!

John
Angie

Monday, 25th May 2009 at 11:07 am

Dear Sahana

I was originally told I would probably have a whipple and I was really terrified. I just cried! It seems such a big deal to us mere mortals (and Im not dismissing any of your fears) but the surgeons do this sort of thing all the time. One of them who I spoke to about it described it as “a little extra plumbing to be done”!

Quite a few people on here have had the whipple and recovered quickly and well, I did not have one in the end although I did have a few minor complications recovering - nothing major tho.

Read through your book and write any questions and worries down - however minor they may seem - and talk them all through with your surgeon.

Make them talk to you and explain, its easy for them as they deal with stuff like this every day but it is happening to you and not them!

Being younger than most of us here (no offense to anyone!) you really cant live with this as you are, my doctor said I was very young at 40 (love him!) to be on medication for the rest of my life, which is not that effective all the time!

We will all try and help with anything you need to ask. I am fitter and more healthy now than I have ever been and certainly would not go back to the way I was two years ago.

All
I can only echo what Peggy said earlier - I may not post all the time but am here taking it all in!

Rhonda
Shame you are getting little response about your get together - Ill be there in spirit!

All the best to all!!

Angie
tatia batz

Monday, 25th May 2009 at 11:12 am

Sahana,
So glad you found this site! I just had my insulinoma removed this past December. It was quite a rough ride. I know you are scared but you are half way there, locating the insulinoma if half the battle. Where is your located? If it is in the head you are far more likely to have a whipple but not always. The most important thing is to find the best surgeon you can with the most experience. If your surgeon is quick to say you have to have a whipple you might want to get another opinion. It may be possible like John said to avoid it. How was your insulinoma located? There are many on here that have had the whipple and they can give you first hand experience as what to expect and what helped get them through. You are young and will recover well I am sure. Do your research on hospitals and doctors and surgeons. There is lots of info on this site that will help you. I too can give you info I found in my research if you like. I am feeling great now and you would never know what I have gone through the past year and half. It is like having a new life! Good luck to you and I look forward to hearing about your journey.
Tatia
Jackie

Monday, 25th May 2009 at 1:51 pm

Sahana, I was also one that a Whipple was likely but did not have one in the end. My tumor was located between the head and neck of the pancreas. It is a scary prospect to face this surgery. I am 59 and just had it in January this year. You can do this and the surgeons deal with this all the time. Ask lots of questions and and read as much as you can about it. I searched online and read as much as I could so I would have some idea of what to expect. When are you scheduled for surgery? Please keep us all posted. It is like we are all family and keep in touch often to support and encourage. Best of luck to you and it will all be worth it to have you life back.
Audra

Monday, 25th May 2009 at 4:56 pm

Hi Everyone,

After engaging in a full out pity party this weekend, I am happy to report some progress. I received a call from the endocrinologist`s office indicating that a request has been made for further testing. The receptionist referred to angiogram and CT so I’m going to assume it is an angiographic CT that has been requested. Fair enough!

Hi Sahana, my thoughts are with you as you anticipate your surgery. Although it is scary for you, I’m happy that you can look forward to an end to this madness! I can’t help myself from asking where you are from-don’t feel obligated to reply. I am a Canadian and there seems to be very few of us that participate in these posts. Like Jackie said, `we are like family`and I know I get tremendous support from everyone here (thanks!). I`ve also found great power in gaining insight from the experiences of others.
Rhonda

Monday, 25th May 2009 at 9:51 pm

Sahana,
I am 31 and had a Whipple just two-and-a-half months ago. It was my first surgery and a major one at that. Like you, I was definitely nervous and did not want to know much about the details of the surgery or recovery beforehand.
In terms of my recovery, the hardest part was not being able to eat and having a tube down my throat. Once that was out, I felt much more like myself. I didn’t have any complications but was tired and sore for a while. I do think that being young and in otherwise good health helps a lot.
As others have said, there are so many benefits to the surgery. I feel like I am stronger both mentally and physically. I have more energy than I have had in years.
Let me know if you have any specific questions that I can answer.
-Rhonda
Sahana

Tuesday, 26th May 2009 at 5:48 am

Thank you, thank you so much everyone! Hearing about it from those who have already gone through this is very encouraging…and knowing that i might not actually need a whipple is a bit of a relief, although i’m going to be prepared for it.. But yes, it is so worth it, knowing that this ordeal will finally be over soon now..
Glad to hear that you all are doing well..i’m scheduled for surgery on the 10th of june..
Once again, thank you so much..for all your support! I am so glad i stumbled upon here ^_^

Audra, thank you for your wishes..and i’m from India..and we’re almost non-existent here.. Having never really had a family growing up, i hope to become a part of this big family..

Rhonda, thank you! And really really glad to know you’re feeling great., stronger than before..it really does ease my mind quite a lot.

Will post soon with more queries

-Sahana
Laura

Tuesday, 26th May 2009 at 9:10 am

Sofia, Welcome. I wish I could tell you that there is a pattern for this disease, but there isn’t one. Some of us have multiple incidents within one day, others can have one per week. I think sometimes you just get lucky and sometimes you don’t. I myself had hypoglycemic unawareness (that is hard to spell!), what that meant was I never noticed myself getting low until someone else noticed and it was too late for me to help myself. In fact, when I finally did call my doctor, her nurse mis-understood me and thought I was having issues with high blood sugar so they told me to fast before my morning appointment. (not a good idea for someone in our condition as you can imagine). So I fasted, drove to the appointment by myself, had a normal appointment, left, went to starbucks and drove myself to work. The next day my doctor called to tell me my sugar was 27! She said most people would be in a coma with that reading and I was walking around and driving!

If you want to self diagnose, I would buy a blood tester and check your sugar levels throughout the day. In addition, write notes about what you are eating and your activity levels. that way, if you see low sugars, you can bring the log to a doctor and go from there.

Good luck!

Laura
Heidi

Tuesday, 26th May 2009 at 2:30 pm

Well, we were being overly optimistic, it seems. The drain didn’t get removed yesterday and will be in until at least June 12th (next Dr. appt.) or longer. The CT scan done last Friday showed the abscess is now about 1/4 of the original size compared to when he was first admitted to the Prince George hospital. Dr. Appleby has decided to leave the drain in as the CT also showed it was in the right spot and is still working well. Apparently, the alternative could still be surgery if the drain stops working and the abscess is still there. However, Dr. A is very happy with Mike’s progress so far and likes what he sees. Mike, of course, was ready to shed his little ‘pet’ (drain bag) and go back to wearing normal clothing - but well, that isn’t going to happen for a while yet. Dr. A. also told him to start moving and get regular exercise now. I will be bumping up his walking distance each week until he can keep up with me and the dog (she and I did 5 km today).

So, we are lazing around the house, puttering in the garden and finally enjoying our very late spring. I have tulips and daffodils blooming and hanging baskets waiting in the greenhouse for better night-time temps. This weekend we finally got the first full green flush of leaves on trees; what a relief from the dreaded grey of winter.

A week ago, I felt a compelling need to stop in at the local animal shelter and came home with a 7 week old, all grey kitten we have named Charlie. We lost our oldest cat, Clara-belle, age 17, at the end of February and have missed having our full complement of 2 cats and one dog. Colin’s cat, Luc, is absolutely outraged with the new arrival, while our dog, Molly, is mothering the little one. Needless to say, the house is a little livelier with a little kitten zooming around after everyone and everything. He is a cheeky little fellow!

So, we are well and starting to feel like normal is returning to our daily lives for the most part.

Heidi
Audra

Tuesday, 26th May 2009 at 6:23 pm

Heidi, I’m sorry to hear that Mike continues to sport an unwanted accessory. Hopefully, the abscess will continue to diminish without further surgery. It certainly sounds like there is lots of life at your house. I totally agree that green is a welcome color and I’ve also been on a greenhouse adventure though didn’t have the energy to actually do any planting on the weekend. Spring is here-take it all in and enjoy the furry creatures in your house.

I received another phone call from my endocrinologist’s office. I have been booked for an angiographic CT on June 15th. Has anyone had their insulinoma located by this means? I am happy to be able to acccess further testing here at home and am just hoping that it will prove effective. At least I have something to look forward to.

Take Care All!
Heidi

Tuesday, 26th May 2009 at 11:08 pm

H Audra,

That sounds like they might mean the ERCP procedure (Endoscopic Retrograde Cholangiopancreatography). It is a scope down through the stomach into the small intestine and into the pancreatic duct to take pictures from the inside. Jackie had that to place the stents she needed in her duct due to her leaking complications. Mike didn’t end up having that, but he did have an EUS (Endoscopic Ultrasound) and they sucessfully found his tumour in that test. Or, there is also an calcium stimulation arteriographic exam, which is like a heart catheter (via femoral artery), except they go into the small intestine instead of the heart. Mike had that too; it was not conclusive, but did show the tumour to be somewhere on the head of the pancreas. Maybe your hospital does the CT via angiogram (up through the femoral artery again).

The incidence of Whipple procedures is higher if the tumour is located on the head, but by no means a foregone conclusion. Mike’s surgeon said he would do everything possible to avoid a whipple, and he did that. The abscess - well that was another story - but at least it won’t be permanent.

Mike’s drain bag is really attractive - especially its contents. Reddish-brown or yellow-grey sludge, depending on the day. He is having a lunch date with the staff at his school tomorrow and will probably be mobbed by the 425 students who really miss their regular computer teacher. Something tells me he will be very busy at the school for a couple of hours, just saying hello to his kids.

I have a small greenhouse in the back yard, and it is completely full of baskets and pots of annuals, since our nighttime temps can still end up down around freezing through til the middle of June. We are Zone 3 here, and gardening can be a challenge. I do up my hanging baskets etc in May to have them really ready to put out once I am sure we are going to be ok. Once the baskets and pots are out, I just have some cukes, tomatoes, melons and peppers in the greenhouse over the summer. Prince George is not like living in Vancouver - the warm winters of Lotusland (as t is often called), do not extend this far north. We are north of Edmonton, and have similar weather patterns as they do, just on the west side of the Rockies. Gardening is my sanity zone, and I have to cram it all in the few short months of summer here. Probably just the same for you is SK. Those Californians have no idea how hard it is to garden in real weather conditions!

Anyway, relax and take care of yourself while you wait for your next test - it will be one step closer to the solution.

Laura - I don’t see a posting from Sofia, am I missing someone new?

Heidi
Laura

Wednesday, 27th May 2009 at 8:59 am

Heidi, I get emails whenever someone does a post. I got an email with Sofia’s post, but I do not see it on here. I believe she is from Sweden, she is a nurse and has has not yet been diagnosed. (Sorry if I got that wrong Sofia, my memory has never been great!)
April

Friday, 29th May 2009 at 6:24 pm

I have been diagnosed with insulinoma and have an appointment at the Mayo Clinic on June 15th. I have read some posts of others who were referred there but never heard how their appointments went or if they had surgery. They have scheduled me for tests on a Monday and a follow up appointment two days later. The problem is I have had those tests already CATscan and ultrasound and don’t understand why they want to repeat them. I also had an endoscopic ultrasound in which nothing was found.

I am trying to get my mind around whether this trip, is worth it and if they do find this thing if I really want to have surgery. My blood sugar goes down regularly if I don’t eat every two hours but other thatn weight gain I haven’t had any bad symptions. I always get to it before I black out, get confused, etc.

I would love to hear any experiences of anyone at Mayo Clinic. Also has anyone tried alternative therapies of any type and been successful.
Audra

Friday, 5th June 2009 at 10:31 pm

Only 10 more sleeps until my next test! I’ve confirmed that the test I will be having is, in fact, an angiographic CT. I will have an IV inserted, dye will be infused and they will proceed to do a CT. I found an article on the internet that described succeess in locating insulinomas with this particular method so here’s hoping!

I had another “episode” last week-the first one of it’s severity in 9 months or so. My vision went “weird”-there were spots within my visual field that I was unable to see. Then I became vague. Unfortunately, my colleague and I were in the process of doing some teaching. I was unable to recall her name and despite eating a fruit bar, orange, and having some apple juice, I experienced palpitations and a feeling of impending doom. I ate a meal and returned home to check my blood sugar. At first check it was 9.6. Fifteen minutes later it was 7.8. Another five minutes and it was 6.7. Five minutes after that it was 5.7. Another five minutes and it was 5.3. Then it bounced around a bit and I settled back to 3.8. Have others had similar events?

Heidi, interestingly, I also have a small backyard greenhouse. I usually start seeds indoors as I have grow lights. Unfortunately, I had a very low germination rate this year. Gardening is also my way to de-stress. I fear that I may not have as much energy this summer to enjoy it as much so I’ll have to look forward to next year with the hope that I will be insulinoma free.

Laura, I recall receiving an email with Sofia’s post as well but I don’t think it ever showed up on the site. Sofia, if you still read the post, try submitting again!

I hope everyone is doing well.
Anne

Saturday, 6th June 2009 at 1:59 am

Audra,
Found your comments about blood sugar levels interesting.
My partner still seems a long way away from any kind of diagnosis. The NHS in the area of England where we live seems to grind exceedingly slow.
This week however he has been complaining of blurred vision again which appeared to be linked to high blood sugar levels. he seems to be having constant palpitations again and no medication seems to be controlling his bp effectively. When he asked his gp what to do about the high blood sugar and blurred vision she said she did not know. If he were diagnosed with diabetes she would give him insulin but since his blood sugar levels jump around all over the place she does not have clue what to do. Mean time because of the very slow progress we are making within the NHS necessary tests do not seem to be forthcoming no matter how many MP’s, CEO’s or consultants we complain to.
It is very frustrating. Good luck with your progress towards diagnosis
Audra

Saturday, 6th June 2009 at 7:26 am

Hi Anne,
It’s unfortunate that I did not have the ability to check my blood sugar when I was experiencing symptoms of being low. In addition to all the food I ate during the incident, I also had several glucose tabs. I have never tested in high ranges like that before. The only other time I recall testing very high was in the hospital after eating following a fast. At that time I tested 10. What I did find surprising last week, however, was the extent to which it dropped in only 5 minute increments. I was also surprised that I did not feel more immediate relief with sugar ingestion. Usually, if I start feeling “off” I can get back on track by eating a fruit bar or something but doing so was not effective in relieving symptoms this time.

Unlike your partner, I have problematic vision and palpitations related to lows. I can appreciate your frustration with the snail’s pace at which things proceed when waiting for tests and diagnosis. I wish you and your partner well.
Audra

Sunday, 7th June 2009 at 8:08 pm

Hi All,
Much to my surprise, I’ve been experiencing some normal blood sugars for no apparent reason. Perhaps I’ve had some kind of spontaneous healing?! I just tested two hours following a meal and I’m an astonishing 5.1. I am totally blown away. I believe I tested 4.2 yesterday morning. Has anyone else experienced periods of normalcy for no apparent reason? I can’t help but notice that I continue to feel exhausted despite having some normal blood sugar readings.
Jackie

Monday, 8th June 2009 at 5:57 am

Audra, I had weeks of normal sugars between episodes. But as time passed the episodes became more frequent and more severe. Because there were periods when I did not have symptoms it delayed my seeking help or it confused what we thought was going on. I was put on hyperglycemics at first because my fasting sugars were high. That was when it all started over a year ago. Also I was coming off of Effexor for hot flashes and we thought that was causing it. But in the end the symptoms demanded more investigation and the tumor was found. Hope this helps.
Jackie

Monday, 8th June 2009 at 6:00 am

Audra, I forgot to add I felt exhausted throughout the whole process whether my glucose was normal or not. And it was an effort to think clearly.
John

Monday, 8th June 2009 at 10:06 am

I want to share with you all my experience today, when I had my annual appointment with my coeliac disease specialist, five years post-diagnosis.

He had, of course, been fully briefed on my insulinoma and the successful surgery in January and the post-operative abscess etc , the insulinoma removed with deep but not triple/Whipple triad surgery. I asked him about the possible outcomes for coeliacs if they have the full Whipple and lose their duodenum - the bit that is damaged by coeliac disease. He could not give any answer to that, there being no published research on it, insulinoma being too rare. But what he said was - you get one auto-immune disease (eg coeliac) and should expect another to come along (eg. insulinoma) and/or another and another…

I shall be watching for new symptoms!

Meanwhile, I must tell you all that, apart from some hypertension which is going to be dealt with - and which is allegedly so common anyway with 60-year olds - my insulinomectomy (if such a word exists) is absolutely successful. Any of you suffering in that post-op state, or nervous pre-op, or still fighting for diagnosis and worried and tired and confused and putting on weight, or being shoved about while your symptoms vacillate of worsen - all of it is so worthwhile! It will get better. Insist - insist - inquire and insist again.

The outcome is so much better than the horribly enfeebling, frightening and confusing symptoms…

Love and warmest good wishes to all

John in London
Laura

Monday, 8th June 2009 at 10:26 am

Hi April and welcome! I have read great things about Mayo and I am pretty sure there is at least one person on the site who had their surgery there so I would say you are in very good hands. I would guess the reason they want to repeat the tests is the tests are only as good as the equipment they are done on. Assuming they have the best equipment at Mayo, it only makes sense. the more info they have before the surgery, the better you can plan and they can plan.

There really are no alternate courses of treatment for this, but I can tell you one thing, if you have an insulinoma, your symptoms will just continue to get worse and worse. Eventually you may even develop what I had which they called hypoglycemic unawareness which means you can be very, very low and not even know it. I frequently drove cars and was alone with my kids when my sugar levels so low, one time I was even under 30! Most people are in a coma at that point. I know the surgery sounds awful, it is not fun, but the upside is a normal life where you are not a danger to yourself or others and it is so worth it! Plus you get the beautiful conversation piece right down the middle of your abdomin… Good luck, one thing everyone on this sight agrees with is the surgery as bad as it is is definately worth it for the end result!
Laura

Monday, 8th June 2009 at 10:37 am

April, where do you live? Close to Mayo?
Jackie

Monday, 8th June 2009 at 1:49 pm

Laura, I love the beautiful conversation piece right down the middle of your abdomin. Boy, have I had a hard time with that one. You have made me laugh…..
David

Thursday, 11th June 2009 at 10:03 am

Hi Everyone

I have been reading all your posts over the last few months while waiting for surgery on an insulinoma and have found them both informative and encouraging (most anyway). Waiting for diagnosis or surgery can be extremely worrying so I thought I would add my experience as a possible encouragement to others.

I am a 55 year old male living in the east of England. My symptoms began early in 2008 with extreme night sweats, episodes of confusion in the mornings and a couple of dangerous experiences whilst driving. My GP thought that the problem could be some form of epilepsy and made an appointment for me at the local hospital neurology department. However, the morning confusions were becoming more frequent and severe, so he arranged for me to be admitted to hospital for tests. I realise that I have had a lot of lucky breaks over the last year. The first was when my wife insisted that I did not have anything to eat before going to the hospital. As a result my blood sugar went so low that I actually had a bit of a seizure and flipped out on the bed in front of the doctor. I thought I was being abducted by aliens! When they checked my blood-sugar it was 1.7. I was immediately put on a glucose drip and returned to normal after about ten minutes. Lucky break two was that the consultant had experience of insulinomas and suspected immediately that this was another. I underwent a series of tests at the hospital which included an MRI scan, CT scan and a 72 hour fast. Whilst the scans were not conclusive the fast most certainly was. My blood-sugar dropped below 1.9 after about nine hours. Having confirmed my insulinoma the local hospital referred me to the endocrinology dept at Barts Hospital in London.

Further tests at Barts included calcium stimulation catheterisation, Octreotide scan, endoscopic ultrasound and another CT scan. The original MRI and CT scans were also reviewed and it was agreed that there was an insulinoma at the tail end of the pancreas. However, the results of the calcium test seemed to indicate a problem in the head of the pancreas. In the end it would be down to the skill of the surgeon. I was again very lucky in that the surgeon who performed the operation was very experienced and has carried out over forty insulinoma procedures.

I had surgery on the 2nd June and thankfully the surgeon was able to remove the insulinoma (about the size of a large pea) without having to remove any other organs. Following twenty four hours in the High Dependency Unit I was moved to the surgical ward. Although painful and uncomfortable for the first few days, recovery has been very quick and I came home six days after surgery. I feel great, my blood sugar is almost back to normal and I have lost almost all the weight I gained while taking the diazoxide tablets. No more swollen ankles and feet.

I know it is difficult to get a diagnosis for insulinomas and whether or not to have what could be major surgery is not an easy decision. I have always been fit and active and the insulinoma put a stop to all that. I was taking the maximum dose of diazoxide and realised that if I was going to get my life back I would have to have the surgery. I have been very lucky and am very grateful for the excellent care I have received from both the local and London hospitals.

Best wishes to all.

David
Jackie

Friday, 12th June 2009 at 5:10 am

Laura, my daughter just used a sharpie to draw a centipede on my scar. I guess I am beginning to get more comfortable with it. My husband says it is beautiful to him because it is the badge of my health. It is an adjustment.
Kricket

Saturday, 13th June 2009 at 11:19 am

I am just beginning my journey with insulinoma. I have been reading the stories on the web of other people with this crazy problem it has been very helpful so if any of you have any advice on doctors, food and how to hurry this processs along I would love to hear from you
Kricket

Sunday, 14th June 2009 at 5:41 pm

Marcus I was just reading about your wifes surgery, I am from South Caroline also and I am curious where she had her surgery and where the test were done before surgery. I am seeing a doctor in Georgia and was told that I would probley have to travel a long way for treatment of insulinoma. Have not been told that I have insulinoma for sure yet (pending all the test to document it) but have all the signs. Hate all the hypo attacks and weight gain just to mention a few. Thanks to all for this web site and all the input. I am happy for all that have found relief and or cure from this life altering thing! Hope Mike is totally well and he and Heidi are having better time my prayers are with you both and to anyone that has to live with a insulinoma. Thanks to you all. Kricket
Audra

Monday, 15th June 2009 at 4:12 pm

Hi Everyone,

I’ve passed another hurdle today as I had my angiographic CT. Now, I await the results. Good grief, I’m not at all okay with the weight I’ve gained (and continue to gain). I’m up a good 15 pounds from where I am comfortable.

Jackie, thanks for sharing your experience. While I am sometimes very mentally clear, there are certainly days I don’t feel competent to be at work. It’s good to know that others have shared this same experience. Aw, bless your daughter for her artistic contribution. I also love your husband’s perspective and it is evidence of his love and support-something we all need so badly!

John, congrats on your clean bill of health following your insulinomectomy (I’m using the term now so I guess that makes it an official word). Here’s hoping your immune system decides you’ve already had enough to contend with.

April, you also would have had a big day with your Mayo Clinic appointment. I hope it went well.

Laura, thanks for sharing your perspective that surgery is worth it.

Heidi, I’ve been thinking about you and Mike and hope that he is still on the road to recovery without any furthe bumps along the way. I spent the weekend playing with my flowers and hope you have had the same opportunity to nourish your soul!

Take Care, All
April

Tuesday, 16th June 2009 at 4:43 pm

My husband and I are in Rochester, Minnesota in search of the elusive insulinoma. Someone asked if I live nearby and the answer is no, we live in Winston Salem, NC. I have been here two days and so far all we have done is repeat tests that I already have had and of course have gotten the exact same results. It was such a waste, both in time and effort. So this has been very frustrating. This is a great example of the waste in our health care system.

However, tomorrow we are scheduled for a calcium stimulation test which I have not had yet so I may get some answers for a change. This test is supposed to tell me what area of the pancreas the insulinoma is in or if it is there at all. After we get the results tomorrow, we may be able to schedule surgery in a couple of days or may go back home and have the surgery done at Wake Forest Baptist Medical Center where there is a surgeon who has some experience with insulinomas.

I still would love to hear from others how surgeries went if you had it a Mayo Clinic and has anyone had success with alternate therapies.

April
Jackie

Wednesday, 17th June 2009 at 6:17 am

April, I am orginally from NC so it is good to talk to someone else from there. I have no info about either Mayo or Wake Forest so am no help there. I hope the calcium test is successful and they locate that devil. I know there were others on the site that did a medication therapy but I would think you are still very restrictive and always worrying about the next episode. The surgery is so worth it to be able to get your life back.

I am so happy to announce I am released from the physicians as “cured”. I had an abdominal xray yesterday that showed the last stent is gone and all is well. And only in the past couple of days I have begun to feel totally like myself prior to surgery and prior to having the hypoglycemic episodes. I feel so free. We are walking two miles every day and I can only say to all those waiting, it is worth it. The disease is a nightmare.
Angie

Wednesday, 17th June 2009 at 9:51 am

To All

Enola Wright, who started an Insulinoma Group on Facebook is interested in producing an “E-Book” with all our experiences and advice. She is interested to know who would be interested to contribute. This will not be on or anything to do with Facebook but a separate Web document.

If you would like to know more contact her through Facebook or I can send messages on to her.

I think it would be really interesting to have a web document like this and many people would be able to access it and find the information we submit. At the moment it is really hard reading through all the posts to find a particular bit of info that I know I have read.

What do you think?

Angie
Peggy

Wednesday, 17th June 2009 at 4:29 pm

Awesome! I would get behind anything that put all our experiences together. I’m sure it would be a great help to anyone looking for answers in dealing with insulinoma. Only someone who has personally gone through this can give the kind of advice and support that sufferers so desperately need. This site has been priceless to me for the last couple years and I can’t say where I would be today without it. Thank you everyone! But I know what you mean Angie, even now with normal blood sugars I find it difficult to get through all the posts. I love all the interaction though. After reading everyones posts It’s a good feeling to know that any answers I had to contribute are all summed up by other bloggers.

On that note I’d like to say congratulations Jackie on being officially ‘cured’! It is the most freeing experience imaginable other than accepting God’s gift of salvation!

April, God’s speed in getting a confirmed diagnosis. I haven’t heard of anyone else’s tumor being confirmed in that way as of yet. My doctor said it would be inconclusive. But the only way to get to the bottom is to go through all their demands first I guess. Your right though, what a waste of time and money. After going through tests for 15 years, I finally got insistent and found the right technician and the right equipment and it was found on the first CT they took! If you are at Mayo I’m sure they have the experience and top of the line equipment. Just stay positive and patient.

Peggy
Rhonda

Wednesday, 17th June 2009 at 11:06 pm

Only ONE MONTH to go until the first insulinoma get-together on July 18th, 2009! I would like to extend an open invitation to everyone that is a part of this website. Insulinoma is a very rare disease, and this is a unique opportunity to meet others that have gone through similar experiences. It is a chance for people to meet face to face, share stories, and receive support.

We are meeting for lunch at 12 noon at C & O Trattoria (www.cotrattoria.com) in Venice Beach (L.A.). Please bring your family. We have reservations for the outdoor patio.

Please click on the evite link below for details:
http://www.evite.com/app/publicUrl/ZCEETDWMYWOFHXLINJNT/insulinoma

Rhonda
Jackie

Thursday, 18th June 2009 at 11:55 am

Kricket, I just saw your postings. I hope you get diagnosed in a speedy manner so you can get back to your life. Mine was diagnosed through a CT scan. I think many are the same. The did fasting sugars and a C peptide as well but it was many the symptoms, low fasting sugar with a high insulin level and a dianostic CT scan. Please keep us posted on your journey.
Enola Wright

Thursday, 18th June 2009 at 4:18 pm

During my follow up consultation Dr Martyn Caplin who is the lead physician, who runs a research programme into the science of insulinomas as well as clinical trials. He chairs the UK Neuroendocrine Tumour Group and is scientific secretary of the European Neuroendocrine Tumour Group.Dr Caplin is keen to hear from anyone in the UK who have had problems diagnosing their insulinoma. A new scanner is being trialled which is sensitive to detecting insulinomas, it is at the Royal Free Hospital in London.

For more information please contact:

Dr Martyn Caplin
Consultant in gastroenterology and hepatobiliary medicine
Royal Free Hospital
Pond Street
London
NW3 2QG
Kricket

Friday, 19th June 2009 at 4:50 am

Jackie, Thank you for replying. This insulinoma is so unpredictable—- went for glucose four hour fastening test yesterday ( second time, second doctor) first time my suger dropped to nineteen after one hour into test yesterday nothing! I had great hopes with this new doctor but now I am so flustrated. I have had all the symptoms for over two years and just like everone else I just want to feel good again,know it takes awhile to get all the test but now I am fearful since the bad test yesterday I may be back to Square one. Thanks to all of you for the great information and please keep it going, I know it helps me to know I am not alone in this. Thanks again Kricket
Enola Wright

Friday, 19th June 2009 at 5:15 am

Hi

In relation to my earlier post about the trial scan doe detecting insulinomas at the Royal Free in London.

PLEASE NOTE: For medico-legal reasons, Dr Caplin could only take referrals which come via a doctor. As this is a study, he would only scan patients with a confirmed biochemical insulinoma i.e. after 72h fast but where the tumour can’t be found.

Dr Caplin has clarified the criteria for participation because he would not want anyone to be disappointed with the expectation that a scan would be given automatically.

All the best
Enola
Jackie

Friday, 19th June 2009 at 9:59 am

The crazy thing is you don’t know when the tumor produces insulin. I could go for weeks with no issues and then boom. As time passed it happened more frequently but still not every day. So it makes sense that second test may not have been as definitive. Don’t lose hope. I hope they will do the CT scan as well. But in reading online it can be hard to find. I was fortunate it showed up with the first one. Hang in there.
Heidi

Friday, 19th June 2009 at 2:19 pm

Hi Everyone,

Not had a lot of news for you from our part of the world lately and been focussed on dealing with our son, who is being formally diagnosed with Aspergers Syndrome (part of the Autism Spectrum), so much stress in that regard. The good news from us, is that Mike is doing well, getting out walking daily, feeling much better, and doing more around the house as part of the family again.

3 months out, he still has the drain bag, which is still producing from the abscess, but according to the last scan it is now much smaller. He will probably have another scan at the end of June, but doctors are happy with things as they are. He is definitely cured of the insulinoma, and getting there with the post-surgical complications.

So besides ferrying my son around for his many appointments, I am spending lots of time gardening and walking the dog. It is nice having that for stress relief. We got ourselves a very cute new kitten 4 weeks ago (all grey) and having fun working him into the family.

To those of you who are still in progress with diagnosis and finding your cure, it will come. I was desperate 6 months ago and thought we would never get it found or removed. Now we are 3 months past and despite the challenges we encountered, things are definitely better. Mike has lost over 40 lbs and looks healtier than he has in years. He too has a fascinating scar - shaped like a hockey stick, down from his sternum, but it was worth it.

Take care of yourselves!

Heidi
Anne

Monday, 22nd June 2009 at 7:43 am

Finally looks like my partner may be about to have the 72 hour test!
They rang him today to say why hadn’t he turned up for his test. There had been no letter and no phone call. Think the NHS must communicate by crystal ball!
So IF he finally gets it what was it someone said that you must not let them give you before it?
Any more tips?
Finally IF he eventually achieves a diagnosis someone recommended a good doctor at Barts. Who was it? We are actually in the midlands. Is London the best place to go for treatment?
Laura

Monday, 22nd June 2009 at 10:05 am

Anne, for the 72 hour fast, I would recommend fasting before, you take him in. That way it should be over quickly…
Angie

Monday, 22nd June 2009 at 10:34 am

Anne

Dr Drake at Barts is very very good. At least two of us have been looked after by him.

I still see him every year for my check up so its good he hasnt passed me on to a lesser being!!!

Anything you need to know just ask.

regards
Angie
Jane

Monday, 22nd June 2009 at 4:21 pm

Anne,

Where are you in the Midlands? I had my insulinoma removed at Queen Elizabeth Hospital in Birmingham by Mr Mirza. He is very efficient, decisive and clear. He teaches the medics as well as doing a great many ops. Although he does, amongst other things, liver transplants, he had removed 4 insulinomas in 2006 alone; this was the year before I had my op so he will have done more since and before. So I do not think you need to go to London if you don’t wish to. In Birmingham my family and friends could come and see me in hospital. Once your partner gets the results of his fast and this shows the results they need to confirm that indeed he has an insulinoma then ask to be referred to the QE so they can quickly do the tests to locate it. Good luck with it all.

Heidi,

One of my sons is ASD: a high functioning autistic. I’m the person who went through Prince George on major road trip 35 years ago! I do not think there’s a link but I thought I’d mention it again!!!!!! This son found my strange behaviour very difficult to cope with when I was ill. So your son is maybe finding Mike’s illness and recovery difficult. But all turned out OK in the end.

All the best.
Jane
Audra

Tuesday, 23rd June 2009 at 6:29 pm

Hi Everyone,

Anne, I hope your partner has secured an appointment for his 72 hour fast.

Heidi, So sorry about your son’s recent diagnosis. I hope there is at least some comfort in knowing so that you can move ahead.

I received word yesterday that my angiographic CT did not reveal my tumor. I was absolutely devastated and didn’t even feel able to visit this site yesterday. Although well meaning, the receptionist who called said “It’s good news, your CT did not show anything.” Little did she know, I had hoped and prayed that the CT would show something. Unfortunately, I have another month’s wait before I see my endocrinologist and the surgeon together. I have no idea what lies ahead as my endo indicated that they would not proceed with surgery unless the tumor was located. I think we’ve run out of options in our health region in terms of diagnostics. Once again, I guess time will tell. My greatest fear is that they will decide that nothing further can/will be done. This is hell!

I wish you all better luck.
Take Care.
Jackie

Tuesday, 23rd June 2009 at 7:51 pm

Audra, I am so sorry to hear they did not find anything. No one can know what this is like unless they are going through it. I just hope they will listen to you and make a plan on how to help you. I read online that there are instances that it cannot be found and exploratory sugery is used. Not that this is your option but it is something to ask about. It is far better to know the location though because if it is located in the tail of the pancreas the surgery may not be as invasive. My heart goes out to you.
Anne

Wednesday, 24th June 2009 at 9:51 am

Hi Audra,
Thanks for yourthoughts. My parner did secure a bed and is 30 hours into his fast. For the last 24 hours his level (English) has been not moving much - around 4.
is this a likely indicator that he is unlikely to have an insulinoma? In the past his levels have sometimes dipped to between 1 and 2 (not often). if its not this i’m not sure where we go from here. Still awful symptoms but no answers.
April

Wednesday, 24th June 2009 at 1:29 pm

I am back from Mayo Clinic with a diagnosis and a scheduled date for surgery. The second calcium stimulus test confirmed the problem is in the tail of the pancreas. There were some abnormalities in the way blood drains from my pancreas which made the results from the first test negative. As a result they also want to remove my spleen to avoid problems with internal bleeding later on. So they will remove the tail of my pancreas and my spleen and hopefully my problem will be solved.

I wanted to mention that the National Institute of Health in Washington DC is doing a research study on fasting hypoglycemia that I was referred to by my doctor. I declined the invitation after talking to the doctor there and realized that I would have to spend two weeks in the hospital doing test after test. It however could be a good option for many who are having trouble with a diagnosis. I had to repeat the tests at Mayo Clinic anyway and it took a little over a week to complete everything. All the care at NIH is free, the only expense would be travel to Washington.

My contact there was Craig Cockerman 301-496-6087. You can also look up all the clinical trials at NIH on the web.
April

Wednesday, 24th June 2009 at 1:37 pm

Heidi,

I also have a son with Asperger’s . This could be a topic for a new blog. He has responded very well to occupational therapy and a really fun social skills group where he meets people like him and feels normal. I have made sure to explain all the details of my insulinoma to him so he knows exactly what is going on. After a new thing I explain it to him and then don’t bring it up again unless he does. He hears me talking about it to others but I am careful to stay on the topic. So many people want to make it worse than it is and talk about pancreatic cancer, complications during surgery, etc. I have been very careful to steer away from those conversations for his sake as well as mine. I am careful to point out that this really isn’t life threatening, just inconvenient and something I have to take care of before it gets worse. Several people I have had to tell that I just don’t talk about it all the time and to read the emails I send out if they have any questions. A few people are just fascinated with others illnesses.

Good luck with your son. I truly believe that these kids are special for a reason and can do great things with the correct nurture and motivation.

April
Audra

Wednesday, 24th June 2009 at 3:13 pm

Hi Everyone,

Anne, I can share from my experience that I had blood sugar readings greater than 4 during my fast. In fact, I had been told to fast prior to hospital admission and was around 3.2 at the time of admission. I thought it would be a breeze to drop to the 2.7 target but such was not the case. My blood sugar actually climbed for a while (despite fasting). I also assumed that I must not have an insulinoma. But, I reached the 2.7 target after about 27 hours and then rapidly dropped to 1.9. The bloodwork done at that time confirmed insulinoma because my insulin level was continuing to climb. Hopefullly, you and your partner will have your answer and plan of action soon.

Jackie, thanks so much for your compassion. I agree that few people can understand this unless you have been through it. I think there is a perception that if tests are negative “At least they didn’t find something that is terribly wrong.”

April, it’s great that you have a surgical date. Where will you be having surgery? Thanks also for the info relating to the study. That is powerful info and I am certainly going to visit the website.

Take Care.
Audra

Wednesday, 24th June 2009 at 4:53 pm

Hi April,

Thanks SO MUCH for the info you provided. I’ve already contacted NIH and spoken to my doctor’s receptionist about obtaining copies of my bloodwork reports.

Does anyone know what the blood glucose measure of 45 in the US translates to in Canadian?

I look forward to your help with this one!
Heidi

Thursday, 25th June 2009 at 10:05 am

Hi Audra,

look at this website - I have used this calculator to figure the different numbers to be able to explain Mike’s situation to his non-Canadian relations.

http://diabeticgourmet.com/Tools_and_Calculators/Convert_Sugar_Readings/

Good Luck!

Heidi
Heidi

Thursday, 25th June 2009 at 10:06 am

Hi again, Audra,

Canada uses the same as the Europeans, so just fill in your Cdn numbers and it will convert it to the US measurements for you.

Heidi
Anne

Thursday, 25th June 2009 at 1:49 pm

Hi All,
After 58 hours we have some kind of result. Blood glucose has dropped below the magic 3 so blood has been taken and we await the results. How long does this usually take?
Anne

Friday, 26th June 2009 at 3:31 pm

Sorry to keep on asking questions, but did anyone else have severe stomach cramps after the 72 hour test and find it very difficult to eat anything? Hope did you cope with this?
Audra

Friday, 26th June 2009 at 9:07 pm

Hi,

Anne, no worries, I think we all take our turns asking and answering questions. I don’t recall experiencing stomach cramps after the 72 hour test nor did I have difficulty eating. I had nausea and headache during the fast and I remember being surprised at how high my blood sugar was right after eating at the end of my fast. I hope you and your partner have heard the results of the test.

April, you truly are my hero! I’m not certain when you are having your surgery but must thank you profusely for the info you provided regarding the hypoglycemia study in Maryland. I have been in contact with them and my endocrinologist has written a letter that is now on it’s way to Maryland. Here’s hoping that I hear back soon. If there are others that are still awaiting diagnosis, localization, or treatment, I would encourage you to look into it. I am feeling hopeful and that is something I haven’t felt to this degree for a while!

Heidi, thanks for the conversion calculator! It’s easy to use which is a blessing because math was never a strong suit for me.

Now that I have all my reports, I am a little mystified. I was under the impression that insulinoma was confirmed when blood sugars dropped during a fast and insulin levels increased. In examining my blood work, it appears my blood sugar, insulin, and C Peptide were all low during my fast. I’m not sure if my insulin levels and C Peptide levels were subnormal but still considered high in light of fasting or what the case may be. Can someone enlighten me on this?

Take Care.
Karen

Sunday, 5th July 2009 at 10:32 pm

Hello All,

I’ve spent yesterday and today reading and re-reading these posts. I suspect that I might have an insulinoma (possibly Men1 as I also have hyperparathyroidism and pcos). I was sent to an endo about 6 weeks ago because of the hyperparathyroidism — he ran some additional blood work and found that my insulin was high and my blood sugar was low. He also found (looking at some tests that had been done a year ago) that I had a 3 cm mass on the tail of my pancreas. I was told when the scans were done last year that the mass was a “shadow” the endo said it is very clearly a mass on the pancreas. He wanted to send me to a gi two weeks ago for a biopsy of the mass, but I argued with him (denial maybe) anyway he ran some more blood work and I have only received one test back — the blood glucose was high! I have never been diagnosed with hypoglycemia (although the endo said I had it) but I did have gestational diabetes with my second pregnancy 16 years ago. About 5 years ago I started having symptoms of how I felt when I had the gestational diabetes — but my sugars always came back in the low/normal range. For 16 months I have had fatigue, weakness, weight gain, for the last two months add heart palpitations, sweats and extreme fatigue.

I am now concerned that I didn’t go directly to the gi for the biopsy. I’ve never posted to a “board” before, and I’m not sure what response I want — but reading your stories are so very familiar — I think my family thinks I’m nuts. Any advice, commentary or anything would be very welcome.

By the way, thank you all for sharing your stories, your histories, struggles and successes. It’s so very reassuring to not be the only person with these very real, very debilitating symptoms.
Jackie

Sunday, 5th July 2009 at 10:46 pm

My best advice is to follow up on this tumor. If you do have one it will only get worse over time. The symptoms sound so much like what I had and removing the tumor will give you your life back. The fatigue is awful and the hypoglycemic episodes are so dangerous. Mine came more often as time went by. If you do have an insulinoma you do not know when the tumor will secrete insulin. That may be the explanation for lows and highs. I hope you will get with the endo guy and get this taken care of.
Laura

Monday, 6th July 2009 at 10:26 am

Karen, Insulinomas are almost always non cancerous, so if that is what you have, not doing the biopsy won’t hurt you. Generally speaking the first test they do to diagnose an insulinoma is a 72 hour fast. I would ask your Endo for that. If your sugar continues to fall while you are fasting and they already know there is a mass on your pancreas, sounds like a slam dunk diagnosis to me. Then you would talk to a pancreatic surgeon. good luck!

Laura
tatia batz

Monday, 6th July 2009 at 12:15 pm

Karen,
If you do have an insulinoma and it is the mass located on the tail of your pancreas, you have won half the battle. Finding the devil is one of the hardest things to do. Usually you have the symptoms before they find the mass and you are already having problems. Jackie is right in that the symptoms will continue to become worse, more severe and happen more often. I agree with Laura bout the 72 hr fast that needs to be done. Having the biopsy is a good idea if your tests come back negative for the 72 hr fast because it could mean the mass on your pancreas is something else. The 72 hr test will point you in the right direction and then you can decide to move forward. If it is an insulinoma meeting with a pancreatic surgeon is key. I had surgery in Dec of 2008 in St Louis, my doctor was at Washington University and I highly reccommend them. They cloned the gene for MEN I at Washington University so they know this disorder very well. I do not know where you live but if you are in the Midwest they are worth looking into. My insulinoma was on the tail of my pancreas, it was removed along with the tail end of my pancreas. Keep us posted on how things go.
Tatia
Karen

Monday, 6th July 2009 at 1:23 pm

Wow! Thank you all for the quick responses. I spoke with the nurse this morning (unfortunately before reading these responses) they are sending me to re-check the insulin (c peptide?) which has consistently been elevated. 2 weeks ago the number was 5.8 (I’m not sure what that means — nurse said it was elevated). They are also redoing the fasting blood sugar (but only a 12 hour fast). I’m not sure about the rest of you, but do you have some days that are better than others? Yesterday I felt pretty good most of the day. Almost normal energy, I felt “human”. However, this morning just minutes after I woke up I’m just exhausted again.

Tatia I’m in Southern California and I have an HMO so travelling to your hospital is out of the question:)

I’m expecting the dr to call back with a recommendation to a gi for the pancreas — when he calls I’ll ask about scheduling a 72 hour fasting blood glucose. I have to say, I have horrible veins so the idea of someone trying to draw blood every hour or so till it drops seems like a very terrible experience …
Peggy

Monday, 6th July 2009 at 6:20 pm

Hey Karen,
Yes, some days were better than others with insulinoma. Actually some months and even years were better than others. I think that is why it took so long for me to be diagnosed. A sure way to tell when you’re feeling poorly is to have some sugar! If you’re feeling better within minutes, you know. (be sure you follow with a complex carb!)

I’m curious where you’re having the blood work done. Seems since the one blood test your endo did already showed low sugar/high insulin that they’d schedule a 72 hour. But if he’s already recommended a GI then maybe you’ll go staight to an EUS. Why did you have the first scan done? I don’t know much about men1 but it seems a 3cm mass is quite large for an insulinoma. You might ask your endo about that when he calls. Also, Ask him how successful a biopsy would be in determining what the mass was. It wasn’t helpful for my insulinoma!(however I did not feel,or remember a thing) If you end up having the 72 hour don’t worry. I have poor veins as well but the test really isn’t terrible (other than having to experience low sugar) and may only be 4 or 5 draws. I’ve had it done 3 times. They usually give you an experienced drawer for this test which makes all the difference.
If you’re not too far and you still haven’t had your questions answered you should come and meet with Pamela (from Texas) and Rhonda on the 18th in L.A! Hopefully I will be there too.
Rhonda

Monday, 6th July 2009 at 6:40 pm

Karen,
I definitely had days where I felt “normal” and others where I had very serious and scary symptoms, i.e. losing consciousness. I agree with Peggy that the best way to find out about our experiences and get many of your questions answered is face-to-face at our first insulinoma get-together in L.A. It seems like you are in SoCal already.

Getting people to RSVP has been almost as hard as getting my insulinoma diagnosed… However, I strongly encourage you and your family to attend. We are meeting for lunch on July 18th at 12 noon at C & O Trattoria (www.cotrattoria.com) in Venice Beach.

Please click on the evite link below to RSVP:
http://www.evite.com/app/publicUrl/ZCEETDWMYWOFHXLINJNT/insulinoma
Karen

Monday, 6th July 2009 at 7:06 pm

Peggy,

I’ll try to keep my long story relatively short. March 08 I developed an excruciating pain (if you put your fist between and just below your breasts is where the pain was), by the time I was able to see my doctor it was mid May. Given the amount of pain I was in, the fatigue I was feeling and a family history of cancer (including my brother dying that April) he ran a whole battery of tests including blood work, CT scan, colonoscopy, endoscopy it took a couple of months to complete all the tests and one of the scans showed a mass on my pancreas. They did a follow up scan I was told there was a “shadow” on the pancreas and they weren’t going to do anything because they said the pancreas was very sensitive and that they didn’t want to irritate it. I was told that I was okay and basically (they didn’t say it outloud of course) to get on with my life. The pain eventually subsided by October to a liveable place. On New Years I passed a kidney stone, and the next week trid passing a second, which led me to the ER to find that both kidneys had dozens of stones, overthe course of a couple months they shockwaved the kidneys to disolve the stones. During these months my energy level just plummetted. I went from walking about five miles a day to barely getting through the day — my poor dog hasn’t been properly walked in months. At a follow up with the urologist, he said everything was great but I knew it wasn’t so I asked if there was nothing more he could do…he said there was one more test so he sent me to get blood work to check my parathyroid. Well, the parathyroid is icky — I have hyperparathyroidism which led to the endo. The endo sent me for a host of blood work and a scan of the parathyroid and sure enough it has to be removed, but the endo also found that I have high insulin and on two blood works lower blood sugar -he said hypoglycemic, but I thought he was talking to himself. So in a follow up with the endo he starts talkign aobut this mass on my pancreas and wants me to see a gi, I didn’t want to, so he sent me for more blood work. this time the insulin is still high but the blood sugar is 196 — so I’m confused. I basically found this site by googling the things that I knew to be true two weeks ago — high insulin, low blood sugar and mass on the pancreas. I also have fatty liver, high blood pressure, pcos and the aforementioned hyperparathyroidism.

I have felt like hammered poo (it’s descriptive I know) for 16 months, but in hindsight, some of the symptoms have occured over the last 5 years or so. I’m not definitely sure about the insulinoma — the last bood sugar was high, which is not insulinoma.

I’m just grateful to read these stories, my family doesn’t understand. I’m typically a very strong, push through the pain kind of gal, but this is kicking my behind and nobody here gets it — and I think they are tired of hearing about it. When I went on line to read the latest post and to respond my daughter asked “why do you keep reading that?” My husband can’t bear the thought that I’m sick so he ignores it, all the while I can barely make it up the stairs without feeling faint. 16 months ago I’m walking5 miles a day and today the stairs are a challenge — I’m just needing a resolution to all of this.

Thanks so much for listening.

Rhonda,

I’m going to try to make lunch, but I go Friday to meet with a surgeon about the parathyroid so I may be recovering …otherwise, I’ll be there, I will definitely let you know.
John

Tuesday, 7th July 2009 at 2:13 am

The new stories on here are very distressing to read - but we old-hands all know that there are almost as many hellish stories amongst us as there were insulinomas! Each of us has a slightly different experience and different outcome. Each new sufferer can take something from the many heart-warming successes and good results - and from the many accounts of individual persistence in securing a diagnosis and treatment.

My own memory is of good days and bad days, of very bad mornings in particular, and definitely of a progressive worsening of symptoms over some years. I have no memory of pain. My problems were with sudden loss of coherence without any warning, shakiness and tremor, rambling meaningless speech, a haunted feeling and inability to explain.

Don’t panic out there. The solution, once you are correctly diagnosed, is a good one. I speak as a 7-months recoverer with a full and complete recovery. I shall be checking in with my surgeon next week and am expecting the full sign-of.
Our condition is so rare that doctors and even endocrinologists are bound, occasionally, to miss it or to feel insecure. I have said it before - insist and insist again and again. Eventually you’ll get lucky and get the blasted thing removed. Life then will be sweeter than you can imagine…

Good luck. We all share in all our worries - and offer support.
John
Peggy

Tuesday, 7th July 2009 at 10:00 pm

Karen,
Wow, you’re really going through it right now. So you have to have your parathyroid removed. I’m sure you will only accept the best surgeon you can get for that procedure! Don’t settle for anything less! I’m sure they will continue to pursue diagnosiis for men1, or have they alread? I know how confusing it can be but take comfort in knowing that though it seems like they are shooting in the dark sometimes, they really do know more than they let on. That is if you have experienced physicians. Though your high sugar reading was abnormal, it is normal to have high insulin with it. (I remember a few high sugars with my insulinoma, but they were freak occurances.)You should be checking your own sugars so you know what is going on. Hopefully they’ve given you a monitor. If not, ask for one!
I’ve also had both kidneys full of stones. I’ve had three surgerys and multiple ESWL’s. My kidneys are a regular stone manufacturer! I too had insulinoma for years before I had a clue that it was my sugar. I never had any pain with my insulinoma though. Did they ever give you any reason for that? It’s a no wonder though with all you’ve gone through You should have an ulcer. Doesn’t men1 cause that as well? I also have 2 sisters with cancer. I can’t imagine what it would be like to loose a sibling…I can’t say that I know how you feel Karen, no one does but you. But I do know what it’s like to feel alone. That’s the hardest part about having a disease. Don’t expect anyone to be able to relate, there’s no way they can. Not even family. It was very hard for my husband especially. I think he felt helpless. I also have a 17 year old daughter.
I hope you can make it to the lunch. I would’ve given anything to have that kind of support when I needed it most. Hang in there, I’ll pray for you and we’ll all be there for you.
Peggy
Karen

Wednesday, 8th July 2009 at 1:04 pm

Hi Peggy,

I’m sorry to hear about your sisters, it is so difficult to watch people you love going through all of that. While doctors have looked, I don’t have an ulcer (yet, the way my body seems to be falling apart who knows….). You say you have issues with kidney stones have you ever had your parathyroid checked? It produces the calcium that sometimes causes kidney stones and if you are a “regular manufacturer” of kidney stones I’d want to find the underlying cause.

I called the dr again today because they never responded to my message sent Monday. When I spoke to the nurse I told her that I was tired of being passive in pursuingmy diagnosis and I was now going to be proactive, I was a bit shocked when she said “good for you!” I guess I expected them to be resentful of my puirsuit. I’ll ask about a glucose monitor, or I think I can just go pick one up at a pharmacy and begin checking it myself. Yesterday was my worst “episode” I was talking to my husband and family about them needing to help more, and all of a sudden I almost passed out. I’ve read that for many people on this site passing out is not out of the ordinary — this scares me…how do you function? How do you hold jobs? Luckily my job allows for summers off, but I’m nervous about being in the class in August and passing out.

If I’m at all able I’m going to the lunch next week. I am glad to know that my family aren’t the only ones with difficulty understanding or being compassionate aobut this disease (insulinoma or not). But to find this group of strangers who are so compassionate is a blessing. You all make me feel not so alone, which I’ve been feeling so very alone in all of this for over a year.

You asked about the pain, it was been almost nonexistent for 8 months and now it’s beginning to be noticeable. Since I don’t have a true diagnosis for insulinoma I don’t know if there is any relation to the pain and the insulinoma.

I’m so glad to have found you all. Even in and through waht you have gone or are going through health wise you are a comfort to me…
Charlotte

Wednesday, 8th July 2009 at 2:17 pm

Hello everyone

I am so glad having found this site!

I am 43 years old, lives in Denmark, Europe and have been diagnosed with insulinoma just 2 months ago. My doctors have decided not to operate me yet because of my heavy overweight (BMI is 43 with height 173 cms and weight 130 kgs), so I have been put on “Diazoxide” which should hopefully stabilize my bloodsugar and enable me to loose weight before operation. But….. I’m on 300mg a day now and it is not stabilizing enough yet, and my nights are still horrible with meals once or twice.

Has any of you good experience with this drug Diazoxide?

I also tried Octreotide (injections) but unfortunately it had the opposite effect and lowered my bloodsugar just after each injection plus it gave me very unpleasant sideeffects.

I would also like to know if any of you have had surgery with BMI in my category – and how did the surgery go? Did you have any complications?

I hope to hear from you very much :-)

Brgds
Charlotte
John

Saturday, 11th July 2009 at 5:44 am

Hi, Charlotte - and you are very very welcome here! It is such a relief to find people who can articulate and shae our many varied experiences and give reassurance.

Good luck with everything over the next period of sorting this out. Tell everything on the site, without any fear. We are sharing a lot, all of us.

I personally had a bad experience with the drug diazoxide. It is very expensive and made me feel sick and shaky - and did nothing to regulate the sugar. I think I only took it for a few days. My endocrinologist admitted that it only works in about half of all cases. When it works, it works well, allegedly.

My only experience with octreotide was in a massive scan, following an injection of octreotide, which lasted several days but revealed absolutely nothing.

You are already diagnosed and waiting for the surgery. The weight issue is, I suppose, a matter for you and your surgeon. He or she will understand fully why you have put on weight and how hard it is to lose weight when trying to maintain blood sugar! Just staying awake and clear-headed needs sugar, bread, chocolate!

Good luck - and let us know.

John
Janet

Saturday, 11th July 2009 at 11:33 am

Hi to all!

Charlotte.
As John said welcome to the site, and post all your worries and concerns here, as all of us have experienced varying symptons, treatment of this insulinoma thing!
I have been taking diazoxide for ten years now and it has helped me tremendously, I hate to think how thing would be if I did not take it. I now take 550 mg per day and rely totoally on it to help my erratic blod sugars. I had an insulinoma removed. along with a large part of pancreas and spleen many years ago in Birmingham in the UK, and then 20 years later had a reoccurence. I live with this second tumour as the op was a concern to the doctors having already had major surgery. It was suggested to try the diazoxide and although I am now on a maximum dose it has been my life line. Although it does not stop the hypos it makes them liveable with and much less frequent. I have had only a few side effects, although excess body hair is a nuisance, but compared with raging hypos its a piece of cake.
At least you do have the dianosis which many of us struggled with to start. I hope that you manage to lose the weight that the surgeon will be hapy with. My prayers and love to you and everyone on here.

LOve Janet xx
Peggy

Saturday, 11th July 2009 at 9:27 pm

Don’t you hate it when you finally blog, a long blog, and it doesn’t post! I don’t know why that happens…Anyway…

Karen,
I wanted to say that if you depend on the medicine to help you lose the weight you need then you may have trouble. I was on the highest dose and although it seemed to help me stay conscious, most of the time, I still had to eat constantly to stay mentally sane. I never did gain the weight that everyone does, the doctors don’t know why. I think it may have been the way I ate. I don’t eat red meat or dairy, fried foods or (hardly) any white flour products. I found that snacking constantly worked much better for me than eating a big meal when I felt low. As long as it wasn’t a high sugar snack. Whenever I noticed that my sugar was dropping I would drink rice milk. That really seemed to work for me. Someone here tuned me on to sweet potatoes, great snack food! It does take a while to adjust, I hope you find what works for you so you can get on with taking care of this asap!

Karen,

Isn’t it the worst feeling not being in control, thinking you might pass out. I hope it doesn’t get much worse for you before you have this figured out.
And I won’t lie, working is hard! Sometimes I would show up a little late, just hours after the paremedics had to wake me up. Fortunatley I was hired by a Christian school when I first had the symptoms of this diseaseso they understood, although they had no idea of the extent of my symptoms. I was able to snack all the time while working. ( I just brought cookies for the students :) There was one (maybe two) person who could tell when I was getting low which was a God send because even my husband couldn’t tell when my sugar was dropping most the time. Knowing someone in the kitchen was helpful too.

I was only 15 when I first found that my kidneys were full of stones. I was as intent as I could’ve been on finding the reason but that all ended when I got this disease. I couldn’t get anyone to agree that the conditions were relatated. My calcium levels were normal. (Of course they said my sugar levels were too before I was finally
diagnosed. I hope you stay proactive!

You know, people are only as compassionate as far as they can understand what you are going through. Try and not expect too much. We know how lonely this disease can be.

Keep the faith,
Peggy
Heidi

Sunday, 12th July 2009 at 11:18 am

Hi Charlotte

My husband, Mike, gained over 40 lbs in the time from his diagnosis in April 2008 to his surgery in March 2009. And, he has now lost that same 40 lbs in the 3.5 months since. My point is that the need to eat almost 2x the amount of food as he did previously, just to keep his sugars within a barely manageable level, brought on rapid weight gain. And we actually believe he had the tumour for about 3-5 years before, because he had a continuous weight gain, albeit slower, during that time and he always felt like he had the flu or a cold coming on. Mike had been sneaking snacks and food during the same time period. His personality also seemed to have changed to one of very low energy and interest in the real world. I had originally thought he was having some kind of midlife crisis and had lost interest in everyone and everything. Well, now I know better and can see the beginnings of a full return to normal happening around here.

Mike still has his drain in for his abscess, but is now walking the dog at least 2-3 km per day and is doing regular chores around the house. (he would go back to work but as a teacher he has the summer off so he will be back for the beginning of September). He has another CT next week and they plan to remove the drain the week after (Dr. on vacation now). They have been very cautious in removing the drain because of all the problems with the abscess that developed post-surgery. The drain bag is very inconvenient as it snags of things as he moves around and he gets lots of stares from people when out in public, but he has survived it well. He feels good, sugars are perfectly normal and he has a bit of a lilt in his step again.

My concern for you, Charlotte, is that your weight level is probably caused at least in part, by the insulinoma condition. Mike’s surgeon commented that he found insulinoma operations challenging because he almost always had to work with overweight or obese patients due to the nature of the illness. But that didn’t stop him. We didn’t try either of those drugs as the local doctor felt they were often not of much benefit, and Mike seemed to be able to eat enough to keep within range. The need for weight loss is completely contradictory to your need to feed your tumour to stay conscious! I would recommend that you have another discussion with your medical people to discuss clearly how this is supposed to work, particularly if you do not have success with the medications.

I have said it before, to others on this blog, advocate for yourself! and be persistent with the doctors. Squeaky Wheels get attention and you need it!

Best wishes from Canada,

Heidi
Rhonda

Sunday, 12th July 2009 at 5:41 pm

Hello all,
I have been re-reading through all of the posts and jotting down some notes. Here are some trends that you may or may not have noticed. Out of the 80 people that have posted, most have been women (67). We are a young group (average age reported is 37). We have come to our diagnosis of insulinoma through a wide range of tests and methods (no trends visible). About a third of us that posted have had surgery for insulinoma. The most common procedure has been the partial pancreatectomy. Two members have given birth post surgery. While we are spread across the globe, the top two places we live are England and California. Interesting…
Jon Mikel Iñarritu

Sunday, 12th July 2009 at 5:51 pm

Rhonda I’m collecting this data too, I want to publish this info in a medical journal. It will re-define old concepts about this disease, specially in epidemiology.
I’ve been trying to contact all of you dear readers and writers in order to collect basic data and to mantain an anonymous database with all your info.
If any of you is willing to participate in this research project, please let me know.

Best of all,

Jon
Jackie

Sunday, 12th July 2009 at 8:18 pm

I am happy to participate in a your research so feel free to contact me.
Peggy

Sunday, 12th July 2009 at 10:03 pm

Jon,

‘Sooo willing to participate in your research project! Count me in.

Peggy
Rhonda

Sunday, 12th July 2009 at 10:23 pm

Jon,
I am eager to participate as well.

Rhonda
Heidi

Sunday, 12th July 2009 at 11:10 pm

Hi, Jon

Mike and I would be willing to participate - Mike lets me do the talking, but he says he would be happy to discuss his case with you too.

Heidi
Karen

Monday, 13th July 2009 at 12:15 am

Thanks again for the replies. I just got the result Friday on a 3 month blood sugar level test (Hemoglobin a1c I think its called). My numbers are, as far as I can tell, inconclusive. So, I’ll call the dr. tomorrow. I saw the surgeon about removing the parathyroid, but he won’t do anything until ths insulinoma thing is all worked out…my endocrinologist told him that he was doing a work up (he also told the gi dr.) but he hasn’t called to tell me what’s next and my next scheduled appointment was a follow up and isn’t until August. So, I’ll call and squeek and hopefully get this old ball moving. For your stats, I’m a female, age 46, living in Southern California, and still working on the diagnosis. Have a wonderful week everyone.
Angie

Monday, 13th July 2009 at 1:14 am

Jon

You can count me in too!

Just out of interest when I had my op I participated in a study to see if increase in oxygen helped the recovery process. Dont know anything more, other than they monitored the oxygen in my blood 6 hours or so after the op.

Always love a bit of research here and there!

Ps Have a great time this weekend when you all meet up - we want to fear all about it! Photos on facebook please!

Angie
John

Monday, 13th July 2009 at 3:32 am

Greetings to all - and to Jon, our inspiring starting point all those years ago!

Of course I am happy to participate in any survey or study. I am in the UK and in the minority group of older people affected, my operation taking place three months before my 60th birthday - and being a male - and having fortunately experienced quite a straightforward progress through from diagnosis to treatment and recovery!

Do we need to feed you our email addresses privately, or do you have those already?
Or do you want us to fill in a questionnaire? Or write a detailed report of some sort?

It will make fascinating reading for all of us - and will help so many still to be affected.

best wishes to all

John
Janet

Monday, 13th July 2009 at 5:35 am

You can count me in on this too. The more research the better. As John says, do you need our e mail addresses.

Love Janet xx
Pamela Moayedi

Monday, 13th July 2009 at 7:29 am

I would also like to participate in your study Jon.
Pamela
Jane

Monday, 13th July 2009 at 9:22 am

Hi Jon,

Not only would I be willing to take part in any research I’d be fascinated to read the results. I actually think we are incredibly lucky in the UK, but then I am biased!

Jane
Susan

Monday, 13th July 2009 at 10:38 am

You can contact me regarding the case of my then 82 year old mother, if that would be of interest.

Susan
Jon Mikel Iñarritu

Tuesday, 14th July 2009 at 11:44 pm

Remember that this is not my effort, it’s yours.|

Thank you so much guys, I really appreciate your collaboration with this good cause!
I will let you know as soon as I finish the data taking sheet and will contact you via email (I already have your address because you set it every time you post).

Best of all,

Jon
Jackie

Wednesday, 15th July 2009 at 9:41 pm

Jon, I don’t know if you realize what this site has meant to us. I think I can speak for all when I say that the experience with diagnosis and surgery was very stressful and to say the least frightening. This site offered to me the bonding with others that had experienced similar occasions, as well as similar challenges. I did not feel alone. You gave this to us. So let us know what you need and we will help in any way possible.
Kim

Thursday, 16th July 2009 at 8:35 am

Jon, I’d like to echo what Jackie said so well and add that I would very much like to help with your project.
Velvet

Thursday, 16th July 2009 at 10:19 pm

Hi,

I am a 37 yr old female who is searching for answers because I cannot get in to see an endocrinologist until late September. I found this site by accident and am hoping someone can give me some answers. I went to my doctor a few weeks back after my symptoms got to be too much for me; weakness, sleepiness, constant hunger, blurred vision, especially after I work out, feeling empty even after I eat, and my brain seems to stop working altogether sometimes. I also have a pain in the middle of my stomach. I have always eaten very well and lifted weights and ran most of my adult life, even ran a few marathons. But now I’m lucky if I get in 10 minutes on the treadmill without feeling faint. To top it all off, I’ve gained about 10 pounds in just a few months, which I cannot lose, even after going on a high protein, low carb, no sugar diet that my doctor said should help. She said I was hypoglycemic after only one blood draw. I actually feel worse on this high protein diet (as a runner I’m used to having more carbs) and my brain is always fuzzy. And I’ve been a terrible crab-apple lately (as my mom likes to say), just angry at everyone! Totally not like me. Could it be an insulinoma and should I try to find an endocrinologist who can get me in sooner?
Audra

Saturday, 18th July 2009 at 9:07 am

Hi All,

Like others, I would be happy to share information for Jon’s database and publication.

I am excited to share that things are moving forward for me with respect to this disease. It is because of this site, and thanks to April, that I will be admitted by the National Institute of Health in Bethesda, MD to undergo tests to localize my tumor. I will be admitted on August 2nd to repeat a fast, and to have a CT, U/S, and MRI. I will return to Canada on August 7th to await a second admission for the calcium stimulation test and assuming the tumor is found-surgery. I am eternally grateful for the information and support of this site.

I hope the get together is going well and that all of you who are healing from surgery or are awaiting diagnosis and surgery are doing well. I always have an interest in how everying is doing and want you all to know that you are in my thoughts as always. I look forward to keeping you updated about my journey. Prior to leaving for Maryland, I have an appointment with my endocrinologist and a surgeon on Thursday here at home.

Take Care!
April

Saturday, 18th July 2009 at 4:59 pm

Audra,

I am glad that the NIH is working out for you. At the Mayo Clinic, I had almost the same tests as you are having with the exception of an MRI. My surgery is scheduled for Thursday in Rochester at the Mayo Clinic. Good luck with all your tests.

I am looking for hints from those who have surgery previously about what to take to the hospital and how to prepare for the surgery. How will I feel afterwards. Should I take my computer and paperwork? I will be homschooling my son this year and need to prepare? Will I be too tired, sick, etc, Should I just take a book and expect to be sleeping most of the time?

How can I make the hosptial stay better. I am dreading being in the hospital for a week.

Any hints would be appreciated.

April
Heidi

Saturday, 18th July 2009 at 9:10 pm

April, April, April…..

This is major surgery and if you have the open procedure vs. laparascopic, you will be very out of it for several days, and then just plain out of it. My husband’s incision is over 10 inches long (with an angle in it) and had 24 staples for a week. Mike was in the high needs unit for 2 days, then in a regular ward for another 16 days, the first time round. His surgeon originally told him he would be in hospital 3-5 days only but unfortunately he developed an abscess from the surgery. After being sent home to Prince George from Vancouver, a week later he ended up in hospital again for another 3 weeks.

Hopefully you will have no complications, but you will be tired and hurting, so I would not expect to be very active doing much other than snoozing, and maybe reading lightly. Don’t take work with you - it is not going to happen! Mike didn’t even spend much time watching TV and he is an addict. He was too sick and too worn out by trips to the bathroom to do much else. The nurses had him doing laps around the floor, and he had to do breathing exercises to make sure he didn’t get pneumonia. Hospital stays are not restful, and you will not have much energy to spare.

So my message is pack lightly and hope you get home as soon as you can. You will have lots more down time to spend on your paperwork and computer! Even at home, you will need lots of rest and recuperation time.

Good Luck and focus on getting though the next few weeks. Hopefully you will have a supportive family and friends ready to carry the load.

Best wishes,

Heidi
Kim

Sunday, 19th July 2009 at 6:27 pm

Welcome Velvet,

Except for the pain in your stomach, this definitely sounds like it could be an insulinoma. The problem is when your doctor says your hypoglycemic and to stay away from sugar, he/she doesn’t know that you have a constant supply of insulin so that sugar is the only thing that will keep your blood sugar level at a level where you can function. You should get yourself a blood sugar monitor and test yourself throughout the day, when you’re feeling badly and when you’re well. You should also request a blood test where you have fasted for some time and it will specify your pro-insulin, insulin, c-peptide and blood sugar. This is all I had to convince my doctor that I had an insulinoma. General practitioners often don’t know what an insulinoma is! In the meantime, try to eat often, small amounts and forget about the no sugar/carbs.

I’m sure others will chime in … Keep in touch.

Kim
Karen

Sunday, 19th July 2009 at 7:43 pm

Well, the good news is there was a cancellation and I’m getting the parathyroid removed. The surgeon is leaning toward a biopsy and things do seem to be moving forward. The other good(?) news is its seeming less likely that I have insulinoma. I have been testing my blood sugars for close to a week now and instead of low blood sugars mine are quite high (the lowest has been 150 — the highest over 300). I’m wondering if any of you with insulinoma also have diabetes? I’m still ridiculously frustrated…

Velvet, I have all the symptoms you list (and have for almost 17 months) including the pain in the stomach. My pain is found if you put your fist between and just below the breasts… Of course, I don’t have my diagnosis yet…. Good luck getting a diagnosis.

All of you are lovely and I’ll keep checking in — especially once I get a diagnosis (insulinoma or not).

By the way, how did the gathering in LA go yesterday?
tatia batz

Sunday, 19th July 2009 at 8:22 pm

Velvet,
It does sound like you have an insulinoma but I am no doctor just a previous insulinoma sufferer! I agree about getting a glucose monitoring kit. You will be able to test yourself and see what your sugar is before and after eating to see if it makes a different after eating. I would demand to get into someone sooner if you can. Ask your doctor for the glucose monitoring kit and a fasting blood sugar test. You could also print out the top portion of this site and take it to them if they are not aware of insulinomas. Keep us updated I wish you success in your quest to get healthy!
Tatia
Kricket

Monday, 20th July 2009 at 4:35 pm

Hello To All I also have had the pain just below the breast on the left side. So many things seem to be going wrong that at times I feel like I am truly going crazy. The doctor has put me on the medication Miglitol to be taken before each meal in all the blogs i have read I have not heard of anyone else on this(has anyone tried this, just wondering) I also had gastric bypass surgery about eight years ago at first the doctors wanted to blame my symptoms on this but since this insulinoma thing begin about two years ago they think different now. I think the depression part is one of the worse things for me. Everyone looks at you and you do not look like you are any different so they can not wrap there heads around it. I take care of my eighty year old father and he depends on me so much it is really hard not to have any energy(I was always on the go and had lots of energy but not now) I just wish I could have my life back and go figure to have surgery to lose weight and now I am one mean eating machine gaing weight like crazy!!!!! Well thanks to all for this web site because it truly is lonely in this diease my prayers are with all of us.
Rhonda

Monday, 20th July 2009 at 11:18 pm

April,
I used very little of what I brought other than toiletries and my journal. I did not feel like reading, watching TV, or engaging in other leisure activities. I spent my time resting, being assessed, taking meds, trying to walk, etc.

Karen,
Regarding the get together, my family and I truly enjoyed the authentic Italian restaurant. Unfortunately, no one else came. There were several last minute cancellations.

Rhonda
Heidi

Tuesday, 21st July 2009 at 8:46 pm

Hi Folks

Guess what - Mike is officially finished with Insulinoma - the drain has finally come out today! 4 months since the operation (March 19) and the only thing left now are the scars.

Now I can get out our honey-do list and make him work!!! He won’t be back to his real work until September 1 when he goes back to school.

Hallelujah! it’s finally over. Thanks for the emotional support over the last year - this group is a life-saver.

Heidi
Audra

Tuesday, 21st July 2009 at 9:27 pm

Hey Heidi!

That is great news! I am so very happy for you and Mike! It’s been quite a trek since the surgery let alone everything that led up to it. I hope your entire family (including new furry beast) has an excellent and good rest of the summer…you deserve it! :)
Jackie

Wednesday, 22nd July 2009 at 6:37 am

Heidi, this is so awesome that you are both at the end of this journey. We celebrate with you and wish you both nothing but happy, healthy days in the future.
Charlotte

Wednesday, 22nd July 2009 at 4:36 pm

Thank you all for your very kind replies!

I feel that the drug might work a little for me anyway – I stopped taking the drug for 2 days and my blood sugar dropped very fast after every meal. I practically had a big meal every second hour or more - day and night for 2 days. I then started again with 400mg daily and has a go from the doctor to increase to 500 mg if this is needed to stabilize. Luckily I do not pay for the drug and get it for free from the hospital.

I had a MRI scan last week and got the result yesterday from the doctor: the 2 cm tumor found by endoscopic ultrasound on the upside of the head of the pancreas is verified by the MRI scan and it seems that it is possible to remove without the Whipple operation. Due to my heavy overweight it is possible that a specialized surgeon will come from Norway and do a laparoscopic surgery which is not standard procedure in Denmark yet for pancreas surgery. I really really hope this will happen so I can get rid of this little bastard!

Since my primary surgeon is on vacation for 3 weeks nothing will happen until he is back. I got a CD with the MRI images but unfortunately we did not have time to look at them so I cannot see exactly where that little bastard is on the images. But never mind, the images are exciting anyway :-)

Heidi: I am very happy to hear that your husband is now finally OK and I wish you both all the best.

I appreciate all of you being here!

Best regards
Charlotte
Audra

Wednesday, 22nd July 2009 at 5:09 pm

Hi Charlotte,

It’s great that you have confirmation of the bastard’s whereabouts! Good luck with your surgery arrangements. I hopeful for you that a surgeon will be able to come from Norway-that would be great! Better yet if you are able to have it done laparoscopically!

In the meantime, take care.
Jackie

Wednesday, 22nd July 2009 at 8:29 pm

I join the excitement of the rest. Once it is found you are halfway there. That is so great. I hope they can do the laparoscope so your recovery time will be shortened. It won’t be long now and you will have your life back.
Nicolai

Wednesday, 22nd July 2009 at 11:05 pm

Hi all,

Charlotte,
Great to hear about your progress. I hadn’t checked the website for a while, so didn’t realise that there was another Dane in here! I have been waiting a long time to sort something out with surgery, and I actually found a Norwegian surgeon who could do laparoscopic operations (which the Danish hospitals have never previously done). I know my hospital has now established contact with him, so this must surely be the same surgeon you are talking about. I really hope you are able to sort things out, so he can come down and do the surgery. If you would like to talk about this, please send me an email at “nicolaiprl@gmail.com”.

Heidi,
So great to hear that Mike has finally recovered from his ordeal. His situation has certainly showed how serious this type of surgery can be, but it is great that he has pulled through and hopefully will have no long term effects (apart from the scar of course).

Regarding my own case, the doctors now want to do more scans, because even though they have found a tumor on the tail of my pancreas, and the blood work indicates insulinoma, it does not “light up” on the CT scan as they normally do. So I will probably have to do an intra-arterial calcium stimulation test. Do any of you have experience with this? And has anyone had a tumor that did not “light up” on CT scans (when they give contrast fluids).

Best of luck to everyone,
Nicolai
Charlotte

Thursday, 23rd July 2009 at 7:40 am

Dear Nicolai

from one Dane to the other: thanks so much for your kind message. I have already send you a private email regarding the Danish surgeon.

To all: isn’t this just amazing how people can connect this way?

Audra & Jackie: thanks for your very sweet words :-)

Best regards
Charlotte
Heidi

Thursday, 23rd July 2009 at 10:25 am

Nicolai,

I think lots of people don’t have tumours that show up on CT - Mike had two CT’s on different machines, and an MRI and nothing showed, so the doctors here sent him 800 km south to Vancouver to have the calcium stimulation test done, and they got an indicator that there was a ‘hot zone’ on the head of the pancreas. This led to another test - the Endoscopic US, which allowed them to visualize the tumour (1.9 cm) on the back side of the head. Then we waited about 6 weeks to get the surgery organized and had to travel to Vancouver again for an extended time.

This all took us about 4 months to progress through. Canada has the surgeons and technology available, but only in major centres, and we live in the north of BC and only have the CT and MRI machines here, as well as waiting lists due to our widespread but sparse population. I can see that patients in small countries may also not have access to all the services required for this complex problem. The medicos always start with the CT and/or MRI as these are the least invasive, while the others involve being put to sleep and the risks associated with more invasive procedures. Have faith, they will find it eventually. Charlotte was indeed lucky to have had it found on the earlier testing.

The laproscopic procedures are much easier to recover from, but we were told that the ability to do the surgery this was is very dependent on the location and circumstances. Mike’s surgeon said he would try to do it that way, but in the end it was the big cut vertically down the middle and with a bend to the right. We are just glad they didn’t end up doing the whipple procedure and he isn’t a diabetic now.

Hang tough and be strong, it seems that help is on the way. The surgeons who do this type of surgery are very specialized and are good at what they do, once they get the process underway. Our surgeon was determined to find the tumour before he started cutting - I liked that he was being cautious and careful. It was a hard enough process with plenty of side-effects as it was.

Charlotte, good luck with this new surgeon - getting someone who is experienced is key. I am very hopeful for you.

Take care,

Heidi
Anne

Sunday, 26th July 2009 at 1:45 am

Hi Everyone,
Hope you are all doing as well as you can and that things are gradually moving forward for all of you.
Could anyone help with this one? My partner went into hospital for the 72 hour insulinoma test several weeks ago (no results yet), but now has an appointment letter come through for a 72 hour test in the hepatology department. No explanation and no means of contacting the hospital before Monday morning to sort out what is going on. The only other 72 hour test, (linked to hepatology )i can find on the net is a stools test to test for various diseases of the liver and pancreas. Can anyone shed any light on what might be going on?
Thanks everyone
Audra

Sunday, 26th July 2009 at 11:48 am

Happy Sunday everyone!

It’s rainy here so is a good day for “catch up”.

Nicolai,
I have had an MRI and a CT-my insulinoma was not visualized in either case.

Anne,
I’m so sorry that you are waiting in the lurch. I’m sorry that I am unable to cast any light on the 72 hour hepatology testing. Also too bad that you have not yet received results from the fast. I was aware of my results prior to leaving the hospital. You and your partner are in my thoughts-certainly, you will know more tomorrow.

Heidi,
As a fellow Canadian and someone who had to travel for diagnosis and treatment, I would greatly appreciate your thoughts on my situation…
I finally met with a surgeon and my endocrinologist on Thursday. Unknown to me is the fact that apparently there is a pancreatic surgeon in my city. Unfortunately, we have run out of options in terms of locating my tumour in this health region. That said, I jumped at the chance to go to Bethesda to the National Institute of Health. I have now learned that endoscopic ultrasounds may be performed in a nearby city (21/2 hours away). I am scheduled to go to Bethesda on Saturday for repeats of my 72 hour fast, CT, MRI, and ultrasound. Further complicating the issue is that my husband is currently at high risk for a heart attack. He was recently hospitalized and we are unable to get insurance which would allow him to travel with me. I am feeling fine about going alone to Bethesda this time as all tests are familiar to me and non-invasive. However, I am torn as to what to do about the surgery. On one hand, if I travel back to Bethesda, I have a certain degree of comfort that they have performed the surgery many times and are doing it laparasocpically if the tumor is in the proper location. However, if I were to have complications, I would be stuck miles away from home and without the support of my husband. On the other hand, if I have my surgery here, I may face a longer wait period and don’t have the same level of confidence in the level of experience here. But, if something did go wrong, I would be supported by all of my family and friends. Good grief this is quite a dilemma. I am truly hoping that my first trip to Bethesda is successful in locating the tumor. That way, I could make an informed decision as to where to have the surgery. Any thoughts you wish to share would be welcome!
Take Care
Heidi

Monday, 27th July 2009 at 11:13 am

Hey Audra,

That’s a tough question to answer. I would expect a ‘pancreatic surgeon’ to be familiar with insulinomas, particularly if they have practiced and studied in a major centre. Our surgeon in Vancouver was a ‘Hepatobiliary’ specialist, and worked on the liver, gall bladder and pancreas and had seen ‘many’ insulinomas in his career. That being said, your testing in the US is definitely going to happen faster - so I would get that done either way. However, you will need a support system during and after surgery, even if you don’t get the level of complications Mike did and your husband’s health is also going to be tested during the stress of your recovery, as you will be quite helpless to begin with. I hope you have some other family/friends who can support both of you during this challenging period.

I would discuss the option of dealing with the local surgeon when you are having your testing at Bethesda. They may be able to link up with your local guy and help you get things sorted out, one way or the other.

We found the wait time for surgery once the tumour was located not as severe as we originally thought. They told us 2-3 months, but then had a cancellation and phoned to ask if we could get down to Vancouver in time - so we jumped at the chance. Got to love those Westjet seat sales!

I am wondering about the costs of going to the US for you? Have you been able to get provincial funding due to lack of local availability or are you just handling it on your own? I would worry about escalating costs if you had complications like Mike did and had a longer hospital stay in the US.

When we flew back from Vancouver to PG (a one hour flight), Mike was so weak, he could not have made it to the airport and through the terminals without my help. We needed a ride on the customer service cart to get to our gate and he had to be pre-boarded with assistance. Of course, in hindsight he was still very ill, as a week later he landed back in hospital for another 3.5 weeks.

It will be a hard choice, but the better option may become more clear once you have had the tumour located and the surgical path is identified.

Was the surgeon you met with, the pancreatic person? What does your endo recommend at this point? Our Endo was out of the picture once the testing had found the tumour and we never dealt with her again. I would ask your Endo if she knows anything about the pancreatic surgeon particularly the level of experience dealing with insulinomas. Just keep asking questions and make it clear you need to make careful decisions particularly in light of your hubby’s health. You can also check into home health care services to support you both post surgery. If he is already sick and you are facing this complicated procedure, you must surely qualify for some services.

If you do go to the US, possibly one of your friends/family can be available to be bedside for you. It is a big thing to ask - but you will need the support. Some of our other Insulinomiacs have also had to travel for surgery - any comments you want to add?

All the best from Mike and Heidi
Audra

Monday, 27th July 2009 at 8:54 pm

Hi Heidi,

Thanks so much for sharing your thoughts-I value your opinion. I looked up the “pancreatic surgeon”. In the phone book, he is listed under the specialty of hepatopancreaticobiliary. Yeesh, I wouldn’t want to have to write that too often-or say it! Because the NIH receives federal funding to do research, the only costs I will incur are in relation to travel and lodging (I”ll have to spend one night in a hotel prior to admission and another night after discharge). However, I will hang onto receipts in the event that I am able to claim medical costs on my income tax return. The surgeon that I met with was a general surgeon. If I’m not mistaken, I believe he is the chief of surgery. Surprisingly, my endocrinologist never mentioned the existence of the hepatopancreaticobiliary dude. This is very surprising especially since they practice in the same hospital! Her only issue seemed to be with respect to diagnostic procedure preference. She expected that endoscopic ultrasound would be offered in Bethesda and it is not. Rather, they do the calcium stim test (which the doctor in Bethesday told me was developed at the NIH). The other consideration that was discussed was the “what if” scenario of “what if you have surgery in the states and you have complications?” However, I know that you are right, I will likely come away from Bethesda with greater insight. Even in the event that the CT and MRI are negative again, at least I will have had almost a week to ask questions and make a more informed decision.

Thankfully, my husband is not down and out. While he does suffer chest pain, he continues to work and be active playing hockey and golfing. We also have a 19 year old daughter still living at home (we sometimes see eachother in passing….she has an active life). I must say I am truly blessed. I have a dear friend who has offered to put her home and work life on hold to accompany me for surgery. It is difficult to have someone make such a huge sacrifice especially when the time frame is unknown.

Thanks again for sharing your thoughts. Take Care.
Heidi

Tuesday, 28th July 2009 at 9:48 pm

Hi Audra,

That’s the right kind of surgeon - I would call his office and see if they can tell you any details on if he has done insulinomas, and how long his waiting list is if it has already been located.

Mike’s calcium test gave them a hot zone, but did not give a firm location. They actually thought he had two tumours as they had two hits, but one turned out to be a cyst that the surgeon said was no problem and he left alone although I think he may have biopsied it.

It sounds like they are making plans for progress and either route could work out well for you. I would think going to Bethesda is worthwhile either way and then you can decide what to do next based on what is found there.

Well ,we are sweltering in 34 C temps in Prince George this week. I have heard the rest of the country is not having as hot a summer, but we are at very high risk of forest fires which is scary. The humidity isn’t too bad, but the house sure heats up fast. We spend our evenings in the basement TV room since it is the coolest place in the joint. Mike has started a major cleanup of his office space in the other part of that room. He’s complaining that the lifting is making his muscles hurt - I am slightly sorry for him, but I have lots more chores waiting for him. A good year’s worth of items on the honey-do list. It’s great having him back!

We were lucky for a change; when we flew to Vancouver we went back to our home town and the help of friends and family we only see occasionally. I stayed in my Dad’s apartment, and we had Mike’s parents and brothers helping us, so we were lucky that way. His parents were somewhat horrified at his condition, since he had never been very sick before, and they were quite stressed out. I borrowed my Dad’s car to get back and forth to the hospital and Mikes old school buddies joined the support visitors. My advice - let your friends and family help you - you will need it, and they will be happy to be there for you. Obviously you can pass on your help to someone down the road. I was grateful for my supportive group and will be available to help any of them down the road.

So, cheers for now,

Heidi
Audra

Monday, 3rd August 2009 at 8:48 am

Hi Everyone,
I’ve made it to the NIH in Bethesda. I’ve just begun my fast after having a robust breakfast and chocolate cake for dessert. I must say it is very refreshing and instills a great deal of confidence to have staff who are so knowledgeable about this disease. If others are out there still struggling waiting for tests, etc. you may want to consider NIH as an option. I suspect I will start feeling unwell shortly from the fast but I’ll do my best to keep you posted.

Hope you are all well.
Laura

Monday, 3rd August 2009 at 11:28 am

Audra, not to burst your bubble, but for informational purposes for the others out there, the fast should go much faster if you fast before the fast. My doctor had me come in first thing in the morning without eating first so I was low to start with. My fast was over in a matter of 2 hours when my sugar continued to fall. Just something to consider for those of you who don’t have unlimited time.
Audra

Monday, 3rd August 2009 at 12:27 pm

Hi Laura,

Actually, I had hoped to be able to have popcorn and coke prior to my fast. It’s been my experience that I crash in a couple of hours after eating such things. I had not had anything to eat since about 8:00 last night so I’d hoped to continue fasting this morning. However, they have to follow a certain protocol here so I had to eat breakfast, then have blood drawn as the fast began. It’s great that you were able to end your fast in 2 hours. If history dictates, I will probably be at this for 27 hours start to end.

April, if you are reading, I’m wondering how your surgery went. You have been in my thoughts.

Anne, I’ve also been thinking about you and your partner and wondering what you’ve learned.

Take Care, all
April

Monday, 3rd August 2009 at 5:02 pm

Audra,

Here’s hoping the blood sugar is dropping fast. Will they let you drink water? I drank a ton while I had the fast and it helped a lot.

Thanks for asking about my surgery. It was a good as could be. They didn’t have to remove the tail of the pancreas, just scooped out the insulinoma. There were no complications. I was up walking the next day. It was exhausting but got better everyday.

I stayed in the hospital five days then left to fly home armed with lots of pain medicine. I am so glad my husband was with me, I just followed him around the airports in a bit of a daze. I am still using the pain medicine but have reduced the amount quite a bit. I have my mother n law here to help me, but I am enjoying being with my kids and at home. I am taking a couple of naps a day and resting quite a bit.

Hopefully you can sleep tonight if you’re still fasting and will wake up finished. Do you know how low they plan to let you drop before it is over?

Good luck.

April
Anne

Tuesday, 4th August 2009 at 2:21 am

Audra,
Thank you for your thoughts. I hope your test has gone well.
Things seem to be moving exceedingly slow here. No results from our test yet (5 weeks ago now) and we were told by the consultants secretary yesterday that the consultant cannot see us until 1st September. Very frustrating!
My partner is currently quite unwell. Very high blood pressure which they cannot seem to bring down and a lot of water retention. Have others experienced this? Does anything help to reduce this? The doctors seem to be at a loss to know what to do.
Hope you are all progressing well with this thing.
Audra

Wednesday, 5th August 2009 at 4:44 am

Good Morning,

April, I’m so pleased that your surgery went well. Can I assume they were able to do it laparascopically? I’m sure you are so glad to have it behind you and to be reunited with your family and on the road to healing. I must thank you again for your tip about the NIH. I will be eternally grateful!

Anne, 5 weeks seems a ridiculously excessive amount of time to wait for results! I feel for your and your partner. I have not experienced high blood pressure nor water retention and I don’t recall anyone else on this site describing those symptoms as part of their insulinoma. I don’t recall where you live (but think it may be the UK). If it seems reasonable, you may wish to explore the NIH as a possibility. The only costs I have been responsible for have been in relation to travel.

After 38 hours, my fast finally ended. While I had dropped to the goal of 45 about 29 hours in, my blood sugar increased again and hovered in the 50’s for what seemed like forever. The protocol here is that the like to have about 3 consecutive readings in the 40’s as long as the participant isn’t experiencing uncomfortable symptoms. I mostly just felt some mild nausea and mild headache so we plugged on. Now it’s over and I’ll await an MRI.

Hope everyone is well.
Marylin

Wednesday, 5th August 2009 at 2:05 pm

Hi All,
I have been reading all your notes and I appreciate you sharing your experience. I am just getting started with this insolinoma thing. I was told back in 1968 I had Hypoglycemia but didn’t have much trouble with it until I had pancreatitis in 2003 after I had gastric by pass surgery. Since then I have had these awful sugar low’s and my husband and I have been struggling with it and we finally got our own sugar tester and kept track of what was happening. My family doctor just blew it off. We tried to tell her how bad it was. I would come home from work tired and fall asleep in front of the TV only to wake up sweating and having to run to the bathroon confused and almost helpless to care for myself. My husband and I took the advise of a friend and bought a Accu-Chek testing kit and started checking my sugar. I would be at 27 and 29 when it would wake me up. I told the nurse at the doctor’s office and she said she didn’t know it would read that low and that was it. So again at the advice of the same friend I made an appt. at a diabetes and endrocrinology center. Well now it is two years later and she had me do a fasting blood te. My poor husband was a wreck while I was doing it. The doctor had me eat a breakfast of pancakes at McDonald’s and wait two hours and then go to the lab for the blood test. I went from 219 to 33 by the time they drew the blood. About and hour after I left the lab I got a call from the doctor’s office saying the lab called them with the reading and the doctor wanted to know if I was ok. When I went in for the follow up the doctor said she didn’t expect that I would have such a reading. My sugar was low and my insulin high. She said she suspected an insulinoma and she wanted me to have some testing done and then go to Mayo Clinic and have the pancreas taken out. Well now! I have had a MRI and two MRCP’s and they didn’t show anything. From what I read that is not uncommon. My gastroenterologest has referred me back to the diabetes doctor and I am waiting to hear what she wants me to do next. I supect she is going to tell me to contact Mayo Clinic. I am wondering if it is worth going. I asked what would happen if I didn’t do anything and the gastro. doctor sain I could run the chace of going to sleep and not wake up. Oh! what to do??? I am 68 years old and I hope I still have some time to enjoy life. My husband and I will celebrate our 50th this October. Thanks for listning to all this. I needed to hear from someone who knows what I am going through. Marylin
Jon Mikel Iñarritu

Wednesday, 5th August 2009 at 8:13 pm

Testing comments
Heidi

Thursday, 6th August 2009 at 1:13 am

Marylin - Welcome. Don’t be too disappointed regarding your results to date. As you will read in many previous postings, many have had to have more invasive testing such as Endoscopic Ultrasound and/or Calcium stimulation sampling to get the location nailed down. It took us 8 months to find my husband Mike’s tumour. If you can go to the Mayo, do it. They have experience. This is rare enough that lots of regular doctors just don’t get it.

Keep in touch with your specialists and make sure they are getting you referred to the next people - you have to be your own advocate in our experience.

Audra,

Glad to hear your fasting test is done - what an ordeal! Mike’s took very little time - he was already at 2.7 at 7 am when we walked into the hospital’s lab and they just did the blood draws then and there. I think the NIH is doing the protocol exactly because they are working on a study - they need to be very careful that people are not injecting the insulin themselves so they start with a meal then wait you out. Our doctors already had tested Mike once when he was taken into emergency nearly unconscious and had sugar of 1.7 on arrival. They were already convinced he had it, just needed it on paper to forward to the next specialist. I wish you all the best results and good luck with the rest of your testing. Maybe being part of a study will be interesting!

Heidi
Jackie

Thursday, 6th August 2009 at 6:09 am

Marylin, your symptoms sound so typical and it is not unusual to have difficulty finding the little devil. You have lots of life left. I am 59 and had my surgery last January. You go to Mayo and fight to have this found and removed. No one that has not gone through this understands how debilitating these low sugar attacks are. Keep monitoring your sugars often and eat enough to keep them up. I gained over 30 pounds eating for my life.
Marylin

Thursday, 6th August 2009 at 5:09 pm

Thanks so much for all you input. I did get a call from my diabetes doctor today and she wants me to call her office and get a follow up appt. I guess she will give me some advice as to what she wants me to do. I did talk to my brother in law today and he has been going through bone cancer and he went to Mayo when he was getting no where with doctors in town and he is very glad he did go to Mayo. He said to call there and get things rolling so I can get my life back in order as quick as I can. It is just hard for me to get my head around all this. I do so much appreciate all you input. It is such a help to know I am not alone and there are people who understand. My poor husband has been blaming the lows on me and the way I eat or the activity I do. But a lot of the time I just don’t know what is going to set it off. Jackie thanks for telling me about your surgery. I was thinking I might be to old to worry about doing it but life this way stinks. Thanks All! Marylin
Heidi

Friday, 7th August 2009 at 1:09 am

Marylin,

As the partner of a former insulinomiac, I can tell you it is most frustrating to understand what is going on with your spouse, However, Jackie is right - you need to keep eating to stay conscious. You will gain weight and you will have those weird moments when your family is looking at you because you are not making a lot of sense, but some days it won’t matter how careful you are, things are going to be off target and you will need to accept it,

We found Mike reacted quite strongly to weather changes, He had a much harder time in hot temps vs cooler days. Things depended on how much sleep he got the night before, and while he managed to keep teaching until his surgery, he was just about useless around the house because he had used up all his reserves to stay on track at work.

Your husband’s job is to watch for the subtle but telltale signs of an oncoming low and make sure you have access to some food or juice and to keep you safe if you start to wobble. All the people around you need to understand that you absolutely cannot control this, you can simply try to cope with the lows when they come.

And have patience with yourself and your husband as it is so confusing to see someone you have known for years behave so differently. I honestly thought for about a year before Mike collapsed and got diagnosed, that our marriage was in significant danger because he had changed somehow and I just wasn’t recognizing him any more. When i discovered that he had this illness, it all started making sense and I found out that he would eventually go back to normal. That is finally starting to happen and I am so glad that my hubby of 21 years still loves me. The entire process was also very hard on our teenage son, who recently said that the period before diagnosis was like his real Dad had somehow died and left us with his shadow. I have described it before as living with a ghost, but one who does weird things.

You are not too old to feel better. This tumour gets bigger over time and the effects get stronger, so the surgery is the only ‘cure’. Hopefully your endocrinologist will get you into Mayo for the next step soon.

Best of luck

Heidi
Sue

Friday, 7th August 2009 at 3:00 pm

Hi! I’m new. I was reading all the stories, mostly paying attention to all the symptoms everyone has been through. I have been fighting low blood sugar for about 20 years, getting worse lately. I read how you all would eat every 2 hours, etc. I have been doing that for years!! If I don’t, I drop into the 50s at 2 1/2 hours. I keep a box of cereal in my bedroom in case I feel shaky in the middle of the night. I have been having night sweats off/on all night, and thought just menopause, but now wonder if it’s not me getting hypo and the glycogen kicking in all night long!
Some of my fasting glucose is 90ish, some lower in the 70ish range, but on the 5 hour GTT both sugar and insulin went up to 180, then sugar crashed below 53 at 3 hours. I have always felt like I was “feeding” my insulin!! For years, if I say, ok, I’m going to eat no sugar and eat healthy, I get shaky and weak that first day. Anyone have any insight into my sugar levels? Thanks.
Sue
Sue

Friday, 7th August 2009 at 5:11 pm

I have another question. Did anyone find that emotional stress made your blood sugar drop? I swear if I get nervous I can tell my sugar is dropping, so I usually grab a snack and then it feels somewhat controlled.
Marylin

Friday, 7th August 2009 at 10:12 pm

Thanks Heidi
I appreciate your comments and it is helpful to know that others understand and can support me as I try to adjust to the idea that I am going to have to follow through with this search for the little devil. Today my mind set was this will pass and life goes on.

I made an appointment with my doctor for the 19th and I expect she will send me to Mayo. My husband and I called Mayo today to see what the process is to get in there and they said my doctor will have to send orders up there and then I will get in for testing and so on. It just seems so extream.
Did your husband have the surgery? If so where did he have it done? How did he do after?
I don’t know what I would do if I didn’t have my husband to help me. He is a wonderful man but I do frustrate him. He has a hard time getting me to eat on a schedule of every two hours. I am stubborn and especially when the sugar drops I fight what ever he wants me to do. That is the Hypo. reaction :(
Heidi, thanks again for the input and I wish the best for you and your husband and son. Blessings Marylin
Marylin

Friday, 7th August 2009 at 10:32 pm

Hi Sue,
I am just beginning to learn about what Hypo. really is. I was told years ago I had it and I must have kept is under controll by eating every time I felt bad. It was like an addiction to sugar. I did gain a lot of weight over the years and at age 63 I had gastric by pass surgery and lost 150 lb’s. I felt real good for about 2 years. I did have pancretites about 4 months after the surgery and it seems like the hypoglycemia kicked in worse after that. I started the hot flashes about 10 months ago and the night sweats and then I will freeze after the hot flash. I suspect that is part of this thing. Like you I have wondered about that. It has been a big help to rea what the others have written. I also got on line and looked up Hypoglycemia and it gives some symptoms. You should talk to your doctor. Let him/her know how you feel and what you suspect might be going on.
Well it is late here and I am going to hit the sack. Got a big day tomorrow.
Good luck
Marylin
Heidi

Saturday, 8th August 2009 at 3:43 pm

Hi Marylin

Mike had his surgery on March 19, 2009 in Vancouver BC. We live in Canada, in a small city called Prince George, in northern BC about 500 miles north of Vancouver. His tumour was in the head of the pancreas on the back side and hard to reach apparently. However, he got away with just a resection of the tumour.

Unfortunately he developed a post-operative abscess that made him very ill for weeks, and although we were released after 18 days in the Vancouver General Hospital and allowed to fly home, he ended up back in hospital in PG a week later and spent another 3 weeks recovering further. When finally released in early May, he came home with a drainage bag that was finally removed on July 23rd, after a CT confirmed the abscess was completely gone.

Mike lost ove 40 lbs from the start of the operation to now. He is completely stable, blood sugars normal and has finally resumed a more normal lifestyle. He will return to work as a teacher in September 09.

We are doing fine now, but it was a very difficult year from his original collapse in April 08 to now. I had lots of help monitoring Mike’s sugars, since he works with a large staff of women who took great care of him for me during his work day. Just tell your hubby to be strong and insist when he notices you are acting oddly that you must have something to eat or drink immediately. Mike is a very easy going person normally, but I still had lots of arguments with him. He kept a qt. bottle of OJ beside him at school so he was able to sip it regularly, since teaching does not allow you to nip out for a quick snack any time you want. Then his staff would ensure he got right into the staff room for his scheduled breaks and get his lunch. At home he was a bit more flexible with his timing, since he was not exerting himself so much, and after getting up in the middle of the night to eat for months, he eventually gave it up because he was more exhausted than if he slept through the night. However, he would need to have some OJ the moment he got up. I have found that the lows always bring on the argumentative side of Mike, and I just dealt with him like he was my son - do it or else!

I hope that helps.

Hi Sue,

We found that eating some protein at every meal time or snack was essential to keeping Mike’s sugars stable longer. He would have cheese, or peanut butter or meat most of the time. We eat a virtually sugar-free diet anyway, and found that he did much better on the foods that were whole grain, and with small portions more often. If he ate white bread or pasta he would burn through it much faster. We also snack on whole raw almonds and eat high fibre foods. Actually our family’s diet is basically following a low GI Diet. High GI foods are too easy to digest and tend to stimulate insulin production as well. Ultimately it’s not about when you eat it is about what you eat and in the case of insulinomiacs, that still isn’t enough as the tumour grows and produces ever more insulin. Needless to say this constant eating makes you gain weight very easily, but after the surgery it comes off quite well.

Try eating smaller portions, more frequently, whole grain everything (you will get used to it) and make sure you get protein every time. It may make a difference in how long you can go between lows. Keep your sugar intake down to a minimum and use it when you are in a low to give you a boost until you can get a proper snack. And get yourself to an Endocrinologist for proper testing. I have known for 30 years that I am a reactive hypoglycemic and I have always been able to manage my sugars with a proper diet only. If you can’t, then you need to be tested for this condition.

I hope this helps….

Heidi
Audra

Saturday, 8th August 2009 at 5:58 pm

Hey Heidi,

I’m back home from NIH. I had some surprising results. It took me 38 hours to “crash” during my fast at which time I dropped to 2 (43). I did experience some nausea, vomitting, and felt spacey but was not too uncomfortable (as I have been with previous episodes). Apparently, my insulin was almost undetectable so the conclusion is that I do not have insulinoma. I was happy with this news and we proceeded on to further testing. The next day, I underwent a mixed meal test which involved drinking boost plus which was meant to simulate an average meal. In 5 hours, I dropped to 3 (48). It was determined that I likely have reactive hypoglycemia and I met the dietician who gave me al kinds of info.

Apparently, having the high sugar snacks to treat my lows that I started doing when I believed I had insulinoma was actually exacerbating my symptoms.

Sorry Heidi, bear with me there is a question for you in here…

Now that I’m home, I am trying to be extremely diligent in following the dietician’s recommendations. However, in spite of doing so, I am continuing to drop below 4. An interesting observation I have made is that when I am 3.5 or 3.9 I actually feel well. When I did feel shaking and experienced hunger and a bounding heartbeat was one hour after eating when my sugar reading was 5.5. As someone who has reactive hypoglycemia, I”m wondering if this is something you can relate to.

Although not having to undergo surgery is a relief and even though it may seem rather silly, I feel frustrated that I will not have the cure that having surgery would have offered. As well, I still have the weight and if I have to continue to eat this way, there seems to be now end of it in the near future.

My husband says I’m just being impatient because I just returned home and have to give this a try but it seems to me that I shouldn’t be bottoming out if I am following the dietician’s recommendations.

Thoughts?
Heidi

Saturday, 8th August 2009 at 10:06 pm

Hi Audra,

How interesting! I always have seen the differences between my hypoglycemia and what was happening with Mike. I have a very strong up and down cycle when I eat inappropriately (ie high sugar items with no low glycemic foods to balance). I can eat ice cream after a meal, but not on its own. The lows are more emotional than anything Mike felt. I cannot tolerate alcohol at all - I rush up and then crash big time. When I crash from eating inappropriately I usually end up crying and shaking.

I think you shouldn’t panic about not being perfect on the dietician’s recommendations. Like many things we all tolerate medicine differently. Food is the medicine here and you will have to tinker with your diet to make it work for you.

My major recommendations are to avoid white flour and sugar foods. Limit your high glycemic foods like rice, pasta and potatoes (the canadian diet, eh) and focus on small portions of protein, and large portions of veggies. And yes, I only cook one meal per sitting and my guys have made the switch to whole wheat everything just fine.

You might want to look at the GI Diet books by Rick Gallop as they are great guidelines for eating to control insulin. I don’t follow them religiously but I have found them to be wonderful tools for managing out entire family’s dietary health. The author says his books are good for diabetics, but that style of food is also good for hypoglycemics. Small meals, more often - it’s kind of like keeping a steady foot on the gas rather than racing and hammering the brakes.

I find it easier now than I did 25 years ago, when I was drinking and partying and not paying attention to these important things. The key is to eat small portions. I eat when I get hungry and then try to stop. Only when I get stressed out do I go off the rails and then I gain weight.

Other than handing fasting glucose tests I have never actually monitored my sugar. I just know how it feels and try to prevent it. And if I am getting grouchy sometimes Mike says “have you eaten recently dear?”

Good luck with finding your path - it is a challenge sometimes but not as bad as those with the tumour.

Heidi
Audra

Saturday, 8th August 2009 at 10:25 pm

Hi Heidi,

Thanks for your thoughts. I like your analogy of keeping a steady foot on the gas. I just checked in again at 3.7 aargh! Do you treat your lows with a high glycemic source like apple juice and then recheck, eat a snack, etc? 15 minutes after apple juice I’m only at 4.1 but now feel a little shaky and have a bounding heartbeat. I don’t get it! I think tomorrow I’ll try not treating my lows and see what happens (as long as they aren’t too low). I’ll check out the books you’ve suggested. Thanks again!
Marylin

Sunday, 9th August 2009 at 8:01 am

Hi Heidi,
You have so much good experience to share with all us us. I do appreciate all the info. I can relate and I shared you note with my husband. It helped him to understand what is going on.

Thank you so very much!
Marylin and Ron
Marylin

Sunday, 9th August 2009 at 8:10 am

Audra,
Glad to hear that you are not going to have to go through the surgery. I know trying to get the right eating schedule is hard as I am struggling with the same thing. All the good advice that is shared in these notes is so helpful and supportive.
Good luck with you efforts.
Marylin
Heidi

Sunday, 9th August 2009 at 10:10 am

Hi Audra,

NO I avoid high sugar foods always. I eat mainly complex carbohydrates because it gives me that long slow burn and I can go longer and not feel low or hungry. I don’t drink juice or pop ever, although I will enjoy a lemonade in the hottest days of summer, once in a while. I don’t use sugar for baking either, and have switched to Splenda for baking. I eat only a little homemade raspberry jam occasionally but almost always with peanut butter which is a protein. I prefer the real fruit to juice any day.

As I mentioned earlier, I do not check my blood sugars because I know by feel what is happening. (I have been doing this for over 25 years and know my body chemistry quite well). I am not a skinny minnie by any means, but when I eat correctly I don’t gain weight and i can pull off a few pounds too.

Please recognize that the more refined sugars you eat, the more you trigger the pancreas to make more insulin - that is it’s job. When I am feeling low I have a couple of whole grain crackers and a slice or two of lower fat cheese and maybe a piece of apple. Some fruits are very high in sugar (like bananas) and are considered high glycemic, so they will again induce a reaction from your pancreas.

Since you don’t have a tumour to feed, what you need to do, unlike an insulinomiac, is stop hitting the gas pedal with high sugar foods when you feel low. That is why you are rocketing up and down. Try moving away from sugar and refined foods, to a more whole grain, whole food type of diet and you will educate your pancreas to put out the insulin in a slow, steady manner. It does work! People with the insulinoma don’t have that option because the tumour is working all the time, but you are lucky in many respects, since your pancreas is just operating on a highly ‘reactive’ basis - you give it high sugar - it responds on overdrive. You feel like crap, you feed it high sugar; it responds again. So change what you feed it, and it will change too over time. Long slow-burn foods will need less insulin so your pancreas will start to settle down and be less ‘reactive’.

As to your feeling of shaky and racing heartbeat - I equate that to the result of your insulin rush processing the sugars and you get a very quick high from it - it is like getting giddy drunk. I have a friend who’s husband also is a reactive hypoglycemic and he has always said he could get drunk on a slice of white bread - who needs beer?

Just a word of warning, - the more stress I am under the harder I find it to eat appropriately and that makes the stress so much worse. It can be like there is a battle of stress hormones in my body and all systems start to fail. That is the time you have to be the most careful because you really are heading for trouble if you don’t rein in the sugar consumption at that point.

if you would like to chat on a direct level - you may email me at home: hshearman@shaw.ca, since this is sort of off topic for the insulinoma subject.

Heidi
Audra

Sunday, 9th August 2009 at 6:40 pm

Thanks again Heidi for your infinite wisdom.! Interesting that the dietician provided the direction of using apple juice or pop (or other sugar) to treat the lows.
John

Sunday, 16th August 2009 at 5:55 am

I have been overseas working recently and reading all the new postings here wherever I was. My heart goes out to those who are having difficult times.
All I can add to the discussions and reports is - whatever it takes, get the diagnosis and get the surgery and get your life back. All the angst brought on by hyper- and hypo-glycaemic episodes, all the worry, the passing-out moments, the feeble times, the rambling speech, the lack of focus - it all goes after surgery. You stop gaining wait from all the night-time snacking, you can once again miss lunch or eat breakfast late without danger and enjoy a varied diet without always searching for carbs and sugars. I write this as a coeliac, too - for whom diet is absolutely crucial and a daily trial!
After the serious insulinoma surgery and subsequent abscess I am still a coeliac - but so healthy, strong and healed. Insulinomiacs of the world unite and beat this nasty little enemy! Share the experience with others who have spent years seeking answers and finally getting them. The road to health might be a rocky one, people might try to accuse you of making things up, some will tell you it’s nothing to worry about, you’ll get negative test results alongside positive ones - but you know this is not make-believe. Insist…

My best wishes to all
John
Marylin

Tuesday, 18th August 2009 at 8:53 pm

Hi John,
Thanks for your input! Tomarrow is my appt. with my doctor to go over the MRCP and my husband and I have been talking about what to expect from her. The MRCP came up neg. I think the doctor will tell us to go to Mayo but what if she doesn’t? That was our big question for the evening. We have written down question’s to ask her but we are thinking she is not going to be able to answere them. I guess the smart thing is to ask her to ref. us to Mayo and talk with someone who has had more experience with it. I just happened to read this blog tonight and fate would have it that you left this note that has been encourageing and has given us some feeling of direction. Thanks much for taking the time to share with us.
Sue

Wednesday, 19th August 2009 at 3:58 pm

I have a question. I get drops in blood sugar. When you had your insulinoma, and your blood sugar dropped, did you get heat surges? Besides the shaking, I’ve noticed that’s what happens to me. Then, I notice in the middle of the night, like after 3 am, I start getting these heat surges until I get up and take in some kind of sugar. Does this sound like anyone else’s experience? thanks.
April

Wednesday, 19th August 2009 at 5:41 pm

Sue,

I did have heat surges sometimes when my sugar dropped, especially at night. Sometimes I was just very hot. Other times I woke up sweaty and hot.

Marylin,
I had a positive experience at Mayo Clinic in Rochester. If you aren’t getting answers at home I would go there sooner than later. They insisted on repeating almost all the tests, so most likely you will have to repeat anything you do at home if you go there.
Marylin

Wednesday, 19th August 2009 at 8:01 pm

Hi April
Good to hear from you about Mayo. It looks like I am going there. My doctor told me today that is the next step and she called a doctor up there to get me on his appt. book. His secretary is going to call me and get the ball rolling. I don’t know if they will go ahead and do test’s when I go there or if I will have to go back at another time???? I hope we will get things rolling so I don’t have to make trips back and forth. Did they start testing right away on you the first trip up there?
Thanks Marylin
Marylin

Wednesday, 19th August 2009 at 8:08 pm

Hi Sur
You asked about the sweats. I have them several times a day and also at night. I am soaked when I wake with them. Then right after the sweats I freeze. I also wondered if they are related to the insulinoma. I asked the doctor today but she couldn’t answere my question? I hope the doctor at Mayo will have an idea about it. They sure are uncomfortable arn’t they.
Marylin
Marylin

Wednesday, 19th August 2009 at 8:10 pm

Sorry about mispelling you name Sue:(
Sue

Wednesday, 19th August 2009 at 9:01 pm

Thanks to both of you for your responses!
April

Friday, 21st August 2009 at 11:29 am

Marylin,

Mayo sent me an appointment card with several tests already scheduled. I had a morning blood test, a Cat scan and ultrasound and appointment with the endoncrinolgist on the first day. I made sure I didn’t eat anything before the blood test. Before the other tests they let me drink juice which they have in little cans if you need it. When we got there they scheduled other tests as needed. They get results really quickly, and seem to be quite flexible in their ability to schedule tests as needed. It was stressful with having tests, then going back to the endocrinologist to get results, then having to wait until the next day for another test. But in retrospect it went really fast. We flew up in June hoping to stay a week but ended up staying about 10 days - my situation was a bit complicated - I don’t think everyone takes that long. And then went back a month later for surgery.

We made sure to tell them that we were anxious to get back home and we wanted everything to go as quickly as possible. They seemed to understand this.

I highly recommend eating a Mac’s which is right outside the Mayo Clinic on the right. after you get through with testing. They have breakfast all day and it was great.

If you need a treat go inside the little mall in the back of the square and get some Italian geletto. Or some fancy chocolate.

Good luck, I think they will take good care of you there.
Sue

Saturday, 22nd August 2009 at 7:44 pm

I have a question again. Thank you all for letting me “pick” information from your personal experience.

I have been fighting low blood sugar for 20 years. I just try and eat every two hours while awake, and usually head off any major drops. However, lately I’ve had major drops that don’t respond very quickly to eating. I have also started a calcium/vit. D routine. So, I joked with my husband that either calcium or vit. D must be playing with either my sugar or insulin levels. Then, I looked it up on the internet, and I read about the Calcium Stimulation Test!!! Does anyone if it is actually possible for oral calcium to be making me spit out more insulin into my bloodstream and making a sugar crash??
Marylin

Monday, 24th August 2009 at 8:42 pm

Hi April, Thanks so much for you information. I am sorry I didn’t get on line until today to check. What you have told me has made me feel better about what to expect. The first day after the doctor told me she was referring me to Mayo, my husband and I sat around just about all day waiting for a call and at 2:00pm we called up there and found out it does not work that fast.
It is interesting to see how fast they work.
You had a lot going on in one day. Did you like the doctor’s?
It sound’s kind of like when my husband goes to the VA. You go in for a blood test and the doctor has all the results by the time you go into see the doctor about an hour later.
We are going to drive up there and I guess we will have to find a motel to stay at. I wondered how many cloths to take so with the heads on how many days you were up there I will be sure and have myself covered just in case.
I will be sure to check out Mac’s and also the Italian geletto. I do love chocolates also.
I just hope they can find the little devil and we can move forward and get life back to some kind of norm.
Ron keeps waking me up when I take a nap and when I sleep at night to make sure I have not gone into a coma. The poor guy, I feel sorry for him. It has not happened and I don’t think it is going to happen to me. He is just a worry wort. He loves me and I appreciate that. We will be married 50 years in Oct. We kid and say this trip to Mayo is our big 50th celebration trip. (no joke) ha ha.

April thanks for taking the time to answere me and it sure does help to know what to expect.

I hope you are doing alright now.

Marylin
April

Wednesday, 26th August 2009 at 2:54 pm

Marylin,

Mayo was our big summer trip !! What fun! We did go up to Lake Pepin over the weekend we were there which was nice because I am a Laura Ingalls Wilder fan.

Overall I found the doctors, technicians, nurses etc. were very good. I saw Doctor Service who was very experienced and talked to Dr. Vella on the phone and he was helpful as well.

I hope they get the appointment made quickly. I think it took a couple weeks for our appointment packet to come in the mail after my doctor had sent all the tests to them. They just gave us an appointment time and assumed it would work for us. They have a little phamphlet with hotel information they will send you.

Good luck. Five weeks from surgery things are getting slowly back to normal. We started school this week - I am homeschooling one child and the other goes to school- so I am no longer in recovery-but I am staying pretty tired. Still taking a late afternoon nap while the kids run amuck on their own.

No more blood sugar lows. I eat what I want, when I want. Mainly just at meal time and munching veggies in between. I have lost ten pounds from the extra I gained from all the eating to keep blood sugar up.

My husband of 13 years went up with me and took care of me hand and foot. As well as helping me make it to all the tests and quizzed all the doctors to death. It is great tot have a good spouse to help out in times like these.

Take Care, and let us know what happens,

April
Marylin

Wednesday, 26th August 2009 at 6:05 pm

April
Thanks again for all the information. It sure does halp a lot and I am sharing your note with my husband. He keeps telling me we have to think about this because this is serious and could get complicated but I assured him I would make sure of my decision about surgery. (“bless his heart”) He loves me and with my attitude lately I don’t know why.
My doctor sent my info. to Dr Service also. She said she had met him one time at a seminar and he scolded her because she didn’t realize that insulinomas could be found in patients that took the fasting blood test may not show the high insulin along with the low blood sugar. She didn’t know it was Dr Service she was talking to when she made the statment. He ask her if she had really read his papers on the subject. She was excited when my test was so perfectly text book. She apologized to me for her excitment at my testing but explained that she never had a patient with this and that it is kind of a rear thing. To her credit she is the one who found out what is wrong with me.
Everything I read about this and also both my doctors kinda confirm that surgery is the treatment.
I am glad to hear that you can eat anything you want now. That is such a relief to be out of that low sugar thing. It sounds like it is all worth going through.
Well Ron is asking what there is to eat around here so I guess that is my hint to cook something.
Thanks again for your information.
Marylin
Heidi

Thursday, 27th August 2009 at 9:00 pm

Hi Marylin

As the spouse of one of ‘you people’ I know how scary this is for your hubby, but the surgery is the only cure for a real insulinoma tumour, so you both have to be strong and let it happen. Even with Mike’s horror show of a recovery which I am sure you have read about, I wouldn’t have life with the insulinoma back again. I have a functional husband back and my marriage is starting to heal. Before I knew what was wrong with him, I really thought we were coming to the end of our marriage, because he had changed so much. Who knew it could be something making him that way? I still loved him, I just didn’t like him very much for a while, but that was the insulin talking and he is back in my good books now.

So tell Ron to make his own snacks for now and be ready to be a full time nurse for a while, but it will be worth it. You will both benefit from this surgery once the worst days are over. We did!

Take care!

Heidi
Marylin

Friday, 28th August 2009 at 3:18 pm

Heidi

It’s good to hear from you! How is Mike getting along now? How are you doing with the low sugar?

Back in the 80’s I belonged to a support group called Overeaters Anonymous. I did well following a program like you discribed eariler where you cut sugar, white flour out of your diet and also I ate only 4 meals a day. O.A. does not give a diet out but they help support your program. It is on the same guideline as A.A. I lost 80 lb’s in 9 mo’s on this eating plan. I felt pretty good also. I am sorry I stopped going to the meetings.

As you can see Ron and I are just getting started on the search for a true answere to what is going on. So far things are pointing to the insulinoma but when we go to Mayo we hope to get a straight answere. Until then I will try to be on my best behaviour.

Well I do appreciate all the input and Ron is holding up ok so far. I just had a sugar low and he shoved the fruit juice and peanut butter in my face. Yum! :(

You guy’s take care and keep me up on what is going on with you…..

Marylin
tatia batz

Friday, 28th August 2009 at 11:05 pm

Hello again,
I think the new look of the blog is great! I guess that is why I haven’t been getting updates lately when anyone post a new blog. Hope everyone is having a nice end of summer! For those of you who are still trying to get diagnosed, awaiting surgery or dealing with a loved one who is in middle of either of these I send you my thoughts of support. I am now almost 9 months post op. You will have your life back so please do not give up the fight. I hope by chiming in I will now get new posting updates. Look forward to hearing everyone’s progress.
Tatia
Marylin

Saturday, 29th August 2009 at 9:07 am

Tatia

Thanks for your posting it is so encouraging to us as we try to make the right decision about this surgery.

Day by day I have more of my life taken away do to this problem. Today I go out with friends but I am worried about my sugar dropping. It is uncomfortable and embarrassing.

I am waiting for my information from Mayo Clinic. I hope they will except me as a patient. In the meantime I will enjoy the comming on of fall and all the changes that are going on in my back yard in the trees and flowers. I hope my very slow growing tomato plant will give me some tomatoes before Christmas! (Ha Ha)

Thanks

Marylin
Heidi

Sunday, 30th August 2009 at 10:47 pm

Hi Marylin

We are very well; our family spent the day driving 300 km to Mt. Robson (the highest mountain in the Canadian Rockies) to go white water rafting on the Fraser River. It was warm and lovely with level 2 and 3 rapids. We are pleasantly tired and thoroughly satisfied by the workout and wonderful views. It was a long day, but we are happily exhausted.

So yuo can see that Mike can now do everything despite our despairs of the spring and early summer. He is truly healthy again and 5 months post-op we only have the scar and an unused glucometer to remind us of what this was all about.

Your answers will come soon and then the cure. It will be a blessing once you are on this side of the problem.

Take care
Heidi
Marylin

Monday, 31st August 2009 at 3:49 pm

Heidi

Wow sounds like a great time for you guys! I am so glad to hear Mike is doing so much better.

Thanks for letting me see the other side of all this. I don’t think I will go white water rafting but I will do a lot of things that have been put on the back burner right now.

I am still waiting to hear from Mayo but expect I will hear soon. It has been 11 days since the doctor sent the info to Dr Service.

You guy’s keep on having fun!!!!

Later Marylin
Marylin

Wednesday, 2nd September 2009 at 3:54 pm

Hi All,

I have a question for those of you that went to Mayo for test and surgery? How long did it take to get you appt. at Mayo once your doctor sent your medical records to them?

Thanks for your reply’s.

Marylin
April

Thursday, 3rd September 2009 at 10:53 am

It took at least three weeks. Maybe longer. I know my doctor knew the appointment time before me. They faxed him but the letter took a little longer to come to me in the mail. If it has been a while call them and see it it has been scheduled yet. I know they have to get all the records and the doctors review them before the appointment is scheduled.

April
Marylin

Thursday, 3rd September 2009 at 5:08 pm

April

Thanks for the info.

I did give Mayo a call and talked to someone who was taking Dr Service call’s yesterday. She said that the doctor was on vacation this week and his secretary would be in next Tues. So I will check back with her on Tues.

I guess I am just anxious to know something. I will just have to be more patient.

Hope you have a good Labor Day.

Marylin
Charlotte

Monday, 7th September 2009 at 7:14 am

Dear all

like most of you all I am so very frustrated about the time we use for waiting………………..

I have come this far: the Norwegian doctor has agreed to travel to Denmark to do the laparoscopic operation. Unfortunately there is no date for surgery yet. Waiting waiting again……

I have stopped taking the drug Diazoxide. Now I can see that it never did any good for me. It worked the first days (never nights) then it stopped working. If I stopped taking the drug just for a day or two it would make my bloodsugar bounce, mostly downwards.

So I stopped and my bloodsugar is more reliable without the drug than with the drug. I still eat 2-3 times every night, take a nap after my kids has left for school and try to live a normal life despite the insulinoma while waiting for the surgery to be scheduled.

Sideeffects were excess body hair (which haven’t fallen off yet!!!), water retention big time, some shortness of breath and a very annoying feeling in my body that something is wrong.

Since I have a very curious personality and try to dig up every information about my disease I have found a video for download on http://www.websurg.com showing an insulinoma being removed by laparoscopic surgery. Price for the download was Euro 10 or USD 14,95. A very fair price for an interesting video. Just a tip for you if you may be interested :-)

Kind regards
Charlotte
Marylin

Monday, 7th September 2009 at 8:02 am

Charlotte Hi !

Thanks for the info on the video. I may take a look at it.

How long have you been waiting to get a date for the surgery?

Keep us updated on how things go and let us know when your surgery is going to be.

I hope it is going to be sooner than later.

I have just started the waiting and wondering what the test will show.

Kind regards
Marylin
Marylin

Monday, 7th September 2009 at 1:39 pm

Hi Anyone,

I am wondering how things are after surgery?

Some of us have to have just part of the pancrease removed and some all of it. One person had the spleen removed also.

What are some of the restriction’s after these operations? Are you on insulin the rest of your life or other med’s. Is your diet still restricted? Does your sugar still drop or is it ok?

Thanks for you answeres!

Marylin
Jackie

Tuesday, 8th September 2009 at 10:06 pm

After surgery there was a recovery period of about six weeks. I did not have the lap procedure so there was a really big incision. So rest, managing a drain (mine was in for 9 weeks) and gradually increasing activity was the course. I am not on any insulin and my diet is not restricted. I am finally free and it is wonderful. And I don’t have to check my sugars anymore. It does not matter if I eat or not my body is back to normal. It is worth the pain and recovery.
Marylin

Wednesday, 9th September 2009 at 6:30 pm

Jackie

Thanks for the info. It is sure good to have people like yourself to talk too. I have gone back and read several of your comments and others. All the info I can get right now will a big help when and if I have to make a decision about surgery. I am still waiting to hear from Mayo. I hope it will be sooner than later.

Thanks again,

Marylin
April

Thursday, 10th September 2009 at 10:21 am

Marylin,

I had my surgery July 23, so I am about two months from surgery. I have had no blood sugar problems at all, even if I skip breakfast or lunch. The recovery is slow but at this point I am driving, taking care of my kids and doing everything I would normally do. I haven’t started vacumming or mopping yet and someone else has to carry the laundry downstairs. I am taking advil everyday for pain around the incision. I only had the drain in for a few days in the hospital.

I had my spleen removed but that was for a different issue that was discovered as part of the process of finding the insulinoma. I don’t think that happens very often for most insulinomas. Best wishes in making the decision. It was a hard decision to make but I am glad I did it, now. .
Marylin

Thursday, 10th September 2009 at 1:13 pm

April

Thanks for the note!

I am glad to hear you are doing so well. This time next year I hope this will be just a memory for you and all will be back to a normal active life for you.

I am giving a lot of thought to all of this and after I speak with the doctors at Mayo I will know for sure what has to be done and I will put my trust in what thay say. It is so much help reading what everyone has gone through.

Thanks and God bless,
Marylin
Heidi

Thursday, 10th September 2009 at 7:44 pm

Hi everyone!

School started this week and Mike returned to his elementary school assignment after being away since March 17, 2009. He was welcomed heartily by 350 students who were hugging him and greeting him loudly. You’d think they missed him or something! He fits into his normal work clothes, and can stand in front of a classroom of kids for hours at a time.(without his sidekick litre of orange juice by his side). I would say that means he is totally cured. One student told him she was so glad he didn’t die! she was so scared for him. (Me Too!).

What an experience this last 18 months has been. We are truly grateful that we had talented people working with us, and for all the support we got from friends, family and complete strangers. I wouldn’t want to do it again, but we got through it with just a few more grey hairs and knowing we are loved.

Those of you waiting for diagnosis and surgery - hang tough - help is coming and you will get through it.

Heidi
Charlotte

Friday, 11th September 2009 at 6:37 am

Hi all

Just got a call from the hospital minutes ago:

I am scheduled for laparoscopic surgery on tuesday 22th september :-)

Please wish me luck!

Rgds
Charlotte
Marylin

Friday, 11th September 2009 at 7:25 pm

Charlotte,

I wish you good luck with your surgery. I will keep you in my thoughts and prayers.

Marylin
Marylin

Friday, 11th September 2009 at 7:28 pm

Heidi,

I am so happy for you and MIke. It must of felt real good to get beck in the class room. Sounds like the kid’s love him a lot.

The best to both of you. You have been through a lot the past few months.

Many blessings,

Marylin
Peggy

Friday, 11th September 2009 at 11:21 pm

Hello to all,
I miss keeping up with everyone. I’m really glad the support is still going on. I wanted to post, not because you need my.. anything you’re not already getting from the awesome bloggers recently , but so I will still get the emails. So keep up the support! This is one connection that won’t get old.

Peggy..a new person for the past year and 7 months!
Susan

Saturday, 12th September 2009 at 1:09 am

So we need to post to still get the emails? I have missed them. Even though it was my mother who had the disease, and even though it was almost two years ago that she had her surgery, I still feel the traumatic effects of it all, and find this connection still an important part of my life. My best to all who are awaiting surgery, and all who have kept the ball going with their sharing of knowledge and experiences.
Marylin

Saturday, 12th September 2009 at 8:49 am

Hi All,

So glad to see some of the past surgery people chimming in to the blog. It is so good to hear how things are going . It gives us who are waiting hope for the future!

I am would like to hear some feedback from those who went to Mayo for test and surgery. I would like to get a feel for what to expect when I go there. I also want to thank those who have already gave me feed back. It all helps so much. I want to make a well informed decision when the time comes.

Untill I see the doctor’s up there I am still in the dark. I have been told that my fasting test indicates that is what we are dealing with,. I am going on what my doctor told me. I have had gastric by pass surgery and that is going to make things harder because they can’t do some of the test because my insides have been altered.

I have the awful night sweats and the vision that goes weird. I was helping my husband in the back yard picking up limbs after having a tree cut down and the activity put me into a sugar low and I ran into the house to get dinner on the table and in my confused state, I burnt my self and got 2ne and 3rd degree burns all down my left leg.

My husband is real worried about me choosing to due the surgery and I feel for him but I want a more normal life back.

I do thank all the people who have encouraged me already and I am sorry to keep repeating my self. I guess it is just all the waiting that is driving me nuts. ( Well I will use that as an excuse) I am a little nutty anyway!!!

Looking forward to hearing from you. Thanks!

Marylin.
Jackie

Saturday, 12th September 2009 at 9:08 am

Charlotte

You are in my thoughts and prayers. You are so close to getting your life back. This is exciting.

Marylin

My heart goes out to you. If you can keep in mind to eat something immediately when you feel this coming on. Or drink orange juice and then eat something because you have to get some sugar on board. But I remember when the lows hit I could not rationize anything. You mind just will not work. And the scary thing is that it happens so quickly and with little warning. Once, I was in a meeting and rushing around and missed the symtoms. Next I remember leaving and driving and ending up on a grassy area in the middle of a parking circle. I drove like that and have little memory of the drive. After that haapened I woudl take my blood sugar before getting in a car and kept glucose tablets with me at all times. It is worth whatever you have to do to get rid of this awful condition.
Christopher

Saturday, 12th September 2009 at 2:09 pm

Hi, my name is Christopher and I’d like to thank the folks who have posted their stories here. They provided some helpful context. Now it is time for me to do the same.

I’ve been eating for what I thought was pleasure for the last 20 years (I am in my late 30s). From time to time, I’d get fuzzy-headed at work, so I’d have a quick junk food snack and I’d snap right back into action. As these little episodes slowly became more frequent, I got into the habit of drinking sodas all the time. Then 2yr ago begain the night sweats, tingling in the fingertips, all these little minor symptoms that are very easy to live with. I had not seen a doctor in five years, and generally felt very healthy despite being about 80lb overweight. I began slowly putting on more and more weight over the last year, changing pants sizes every other month, and urinating two or three times a night. I have terrible eyesight in any case (due to keratoconus), so I did not notice any new double vision, although I probably had some. I still felt great, so I didn’t worry about it.

All this changed at the beginning of August this year. I had recently transferred to a new city (Albuquerque) and changed my diet towards more home cooking and less fast food. Ironically, this healthy diet soon revealed the real problem.

One Friday, I had a LOT of food, so the next day I ate a light breakfast and sat down to watch some TV. The next thing I recall clearly was answering questions (badly) asked to me by paramedics. My uncle had called them after I’d had some kind of fit. He’d called the ambulance. They measured my blood sugar in the low 20s, and given my size, they assumed I’d overdosed on insulin injections somehow. When they learned that I was not a diagnosed diabetic, they took me to the hospital.

As you know, spontaneous hypoglycemic episodes are very unusual — very few things can prevent the release of energy from stored energy in fat and muscle. My blood sugar levels were impossible to stabilize, because even at maximum IV drip rate on 10% glucose, my BSL still plunged quickly in the absence of food. Octreotide injections happened to be ineffectual, although proglycem luckily did have some effect. The nurses checked my BSLs once every other hour, feeding me snacks as I needed them to keep me. Even so, I still made it into the 30s and low 40s a few times as my stay stretched into weeks. So much fluids being added to my body made my arms swell, making finding new IV sites more and more difficult. Eventually, a PICC line got inserted into my right arm (inserting one in painless, by the way), which solved the volume limitation.

My local docs consulted nationally, eventually working with the docs at Mayo in Rochester. One suspect was insulinoma. To exclude other possibilities, they ran a bunch of blood work. No antibodies against insulin, no signs of artificial insulin, and very high simultaneous levels of proinsulin, insulin, and c-peptides. The latter meant my body was making insulin contstantly, and at a rate triple the normal maximum human level. They used Whipple’s triad and put me on a 72hr fast; I barely made it into the 2nd hour before my BSL dropped into the 40s and I began having very mild fuzziness. Stong chance of insulinoma!

CT scan failed to reveal the tumor. So did an ultrasound exam. They had a nuclear imaging facility at the hospital, but even after pumping me full of markers, no sign of the tumor. (All of this is painless, by the way.) Finally, they used endoscopic ultrasound (examining my pancreas via an ultrasound unit inserted orally into my stomach (this is far from painful; they put me under light sedation and I found the experience fascinating), and finally imaged (and biopsied) the tumor, about 2cm in size, located in the neck (center) of the pancreas. The surgery looked dangerous; using endoscopic surgery was not possible in my case due to my size (360lb, 160lb overweight by time of admission) and my dangerously high blood pressure. Due to the quite likely chances of complications, I opted to have my surgery at MD Anderson Cancer Center in Houston Texas, after reading many good things here in this blog and elsewhere about their expertise.

In my case, I could not be discharged from the hospital to await surgery at another facility, due to the need for constant glucose IV drip. So, my insurance company listened to my doctors and I traveled via medical flight to Houston. Upon arrival to ICU, they switched me to 20% glucuse and re-upped my rate, finally giving me more frequent BSL readings above 100. They reimaged my tumor, discovering it to be larger (2.33cm by 1.91cm) and quite near ducts in the pancreas. Just prior to the surgery, I was up to 35g of glucose per hour IV rate (this is something like 23 cans of Sprite per day, if I have my maths straight). They installed an epidural, and I had my insulinoma removed on the morning of September 1 during a 6hr surgery. The tumor did turn out to be too close to ducts to ennucleate. Instead of attempting a Whipple bypass, they elected to remove the tumor, the left half of my pancreas, and my spleen. I woke up pain-free with a stapled-up incision running from just below my breastbone down and slightly to the left of my navel, and a drain site a few inches to the left, and a catheter for urination.

Late the following morning, they got me out of bed and I moved to a special mechanical chair, with a few small steps, sitting there upright for most of the day. The next day, I took a few small steps around the room. They began giving me a liquid diet almost immediately, and although my appetite was much reduced, I still began eating foods that were more and more normal over the following days. Many morbidly obese folks have a paralyzed diaphragm following upper abdominal surgery and I was no exception. If you wake up with less than third of your normal lung capacity, do not worry. They gave me a few small plastic breathing tools and attached me to a lung expander six times a day. It took five days, but suddenly I began to breathe twice as deep, and then even more deeply back into my normal range. All those breathing exercises are painless but very worthwhile. My urination catheter came out on the fifth day. By the sixth day I was strong enough to walk unassisted under my own power, dragging my IV pole behind me doing laps around the nurses station. Day 6 also saw the removal of my worthy epidural, switching to pain pills. By they seventh day, I was pain-free without even occasional pain medication — the very low amount of pain I felt throughout post-op makes me extremely thankful for their apparent skill! At the time of surgery, I was up to about 380lbs — most of which was fluid retention (remember the swelling?) — and that fluid finally came rushing back out of me via massive frequent urination. By the 9th evening I was down to 345lbs and feeling much relieved. I was discharged from the hospital on the 10th day after my surgery, and am now finishing my recuperation at my relatives’ home in the Houston area. I anticipate a return to work within about a month.

Some observations:

1. Some people think that having a high-carb diet will lead to insulinoma. I think that only the reverse is true: an insulinoma will lead invariably to a high-carb diet. So will personal preference, a sweet tooth (guilty as charged), or a million other unrelated things.

2. The clinical test for insulinoma is Whipple’s Triad in combination with 72hr fast. There is no use worrying about insulinoma until you fulfill the triad under doctors’ supervision. I was lucky in my case; my early endocrinologists immediately consulted nationwide to find advice. If your local doctor seems obstinate, make sure he knows about Whipple’s Triad before losing faith in him. Many endocrinologists will go their entire medical career without ever encountering a single insulinoma patient, so it is encumbent upon you the patient to make sure they know about how to use the triad to hopefully exclude insulinoma from whatever your problem turns out to be.

3. Before your insulinoma surgery, ask about the epidural. They are doing amazing things with pain medications these days and an aggressive pain management plan will be invaluable. My epidural was very low pain to install and worked perfectly. Mine had a pain button attached to it, and my doctors insisted that I use it as often as I felt any discomfort at all. Epidurals can remain in place for up to seven days post-op, by the way, depending upon technique, and there is zero risk of addiction no matter how many times you press the button.

Thanks again to everybody who has posted here. Pancreas surgery is dangerous, but advances in surgical technique are happening every day. Keep up your hopes!
April

Saturday, 12th September 2009 at 9:51 pm

Marilyn

Several of my relatives were very worried about my having surgery and were giving all sorts of advice without really understanding what the issue was. My Dad thought I should wait until my children were grown before I had the surgery!! I found that for me it was best to focus on the facts. I made a notebook with all my test results and notes I had taken while talking to doctors. I included information from the web that helped explain what an insulinoma was and I even had a color coded diagram of the pancreas. I had a special place to write questions that I thought of. When it came time to make the final decision, I went over all the information I had gathered with two people whose opinions I respect and value. My husband and my sister. After getting their input I made the decision. I chose to avoid discussing my condition with people who told bad hospital stories or insisted that I had or could have cancer. When I got calls from these people I let my husband handle the call. So my advice is to get as much information as you can and focus on the facts. My husband went with me to all the appointments and I let him ask as many questions as he needed so he was just as informed as I was.

One of the hardest things about this condition was making the decision to have the surgery but I think it was worth it for me. I feel so much better.

Good luck. Hopefully you will hear from Mayo soon as before long you will have much of this behind you. Meanwhile, eat often and try to plan some simple fun things to do to keep your mind off insulinoma.
Marylin

Sunday, 13th September 2009 at 1:22 pm

Hi Jackie,

Thanks for the advice! I had a doctor tell me a year or so ago to be sure and check my blood sugar before I got in the car to drive anywhere. I thought he was being extream but I did what he said. He also told me I may have to go to Mayo and I thought he was out of his mind. That is called DENIAL !WOW !

I am with the game now and I am working hard at doing the right things. All the info. from this blog has helped open my eye’s to how real it is.

I am glad I read some of the blog’s before I went in to talk to the new doctor this last June. I understood what she was telling me and I listened close and I didn’t blow her off like the other doctor. She is sending me to Mayo.

I do keep sugar and some peanut butter in my purse all the time.

Thanks for your help!

April,

I want to thank you also for your support and advice.

As a matter of fact last night it occured to me to go back and read from some of the blogs in 2007. I started writing down the names of some of the test and some of the medication’s I saw on there. I didn’t know what I was going to do with that info but if the doctor at Mayo mentions any of them I will know they had been used before and also I will be able to ask about some of the test. I am so ahead of the game since I have had all of you to feed information off of.

The fact that you have reaffirmed what I have done is a great help. I don’t know why I even thought of it. My husband was so against me doing that. I let him read your note and he understands it is better to be armed with information when we go in together and we will be going in the same direction instead of fighting one another on this.

We will hold onto the positive and kick out the negative and keep our spirits up.

Thanks for your help!

Marylin
Heidi

Monday, 14th September 2009 at 10:32 pm

Marylin,

Our local doctor told us that if Mike didn’t test his blood before getting in the car to drive, he would not be covered by insurance if he had an accident, because he would not be able to prove that he was stable. He had seen several insulinoma patients over his 30 years practicing here, and he knew all the issues we would face. With our heavy snows and icy roads, we took him seriously and Mike always tested particularly after work when he had only been snacking since lunch.

You’re getting closer!

Heidi
Marylin

Tuesday, 15th September 2009 at 7:27 am

Heidi

Boy! I didn’t even think of the insurance thing. I guess I have been real lucky so far. Really I have only driven a car about 4 or 5 times in the last 6 years. I am just not comfortable going out on my own and when I go out with friends I ask if they will drive. I didn’t think of how I have restricted my life until just the last couple months.

Since I see how the rest of the insuloma’s patients have had recovery from this thing it has made me think of what I have given up. Until a couple months ago I didn’t know what an insuloma was and now I can see my freedom returning.

I talked to the doctors at Mayo secretary yesterday and she confirmed that the doctor has rec. my records and since the doctor I was ref. to is semi retired he told her to get me in with another doctor up at Mayo. He said that way I could get in this month. She is going to call me back with more information. I kinda wanted to stay with Dr. Service since my doctor here referred me to him but I guess they all are good doctors up there and have experience with this insuloma thing. So the ball is rolling. I am glad and I know it sounds dumb but I pray they do find an insuloma so I can get better and get my life back. I just have to get my husband on the same page.
What can I say, He just loves me so much he is afraid of things not going right. I am a lucky one. We will be married 50 years on Oct. 10. I may have told you that before I don’t remember. Well we will celebrate up north at Mayo it looks like????

Thanks for taking the time to blog appreciate it so much!

Marylin
Marylin

Tuesday, 15th September 2009 at 10:15 am

Woops it is insulinoma! What can I say I can’t spell.
Jackie

Wednesday, 16th September 2009 at 6:09 am

Marylin

No better anniversary present than getting your lift back. I hope they diagnose this sooner rather than later and get you on the road back to a far better life.
Marylin

Wednesday, 16th September 2009 at 5:41 pm

Thanks Jackie!

Well I did hear from Mayo and I am going to see the doctor at 8AM Monday the 19th of Oct. and see the surgeon on the 21st. So the ball is rolling and I am glad.

I am going to get my notebook organized with question’a and stuff to ask when I get up there.

Blessing’s to all

Marylin
Marylin

Friday, 18th September 2009 at 8:40 am

Hi to All,

I hope you are all doing well today. We have another beautiful day going on here in Indiana and I do appreciate it so much.

Ron and I are going to have dinner with all the family for our 50th anniversary on the 10th of Oct before going to Mayo for test and surgery? I will enjoy being with family and the distraction will be good.

Again I want to thank all of you who have shared on this blog. It is a great help but I am sure you know that since most of you have gone through what I am dealing with right now.

Thanks and blessing to all!

Marylin
Jackie

Friday, 18th September 2009 at 9:53 pm

Marilyn

Happy Anniversary early. The best years are yet to come. The next anniversay will be awesome.
Jackie

Friday, 18th September 2009 at 9:58 pm

Marilyn

I read my post and it did not say exactly what I meant. Fifty years is wonderful. But now that I don’t have this awful disease everything is better than ever. It is hard to describe but you will soon know what I mean. Once that awful tumor is gone it is like a new lease on life. I hope that soon you will get to experience a new beginning tumor-free.
Marylin

Sunday, 20th September 2009 at 11:14 am

Hi Jackie I understood what you ment, no problem. Thanks for your post’s. I do appreciate all the encouragment. It is getting real now and I am getting the jitters. I will do fine but I don’t know about my husband.

We are going on line and look up some inexpensive motel’s up there. It looks like we will be spending a few day’s up there if I do have surgery.

Well thanks for your post.

Blessings

Marylin
Sue

Wednesday, 23rd September 2009 at 12:29 pm

I have had fasting b/s at 100, and fasting glucose at 8.8. I still fight all morning to not get blood sugar drops. I always HAVE to eat lunch by 11:00, or my b/s drops. Even if I eat something a little at 10:00, like a handful of cereal(Life). Today, I didn’t get my lunch until 11:30, and as I was eating, I started shaking. I tested and my b/s was 52. Is it possible to have an insulinoma with my fasting numbers above, and then maybe it starts dropping all morning, even with eating? I’m so tired of this.
Sue

Wednesday, 23rd September 2009 at 8:28 pm

I’m sorry. On my last post I meant a fasting INSULIN at 8.8!
April

Wednesday, 23rd September 2009 at 8:34 pm

Do we have to have these photo’s at the top of the page? Really, none of us need to see that especially if we are getting ready to have surgery or if we just had it.

Don’t look if you haven’t already.

April
Pamela moeyedi

Thursday, 24th September 2009 at 10:46 pm

I have not got the posts in so long as well! I joined this blog over a year ago when i was diagnosed…. and the support, and encouragement was amazing! I hope to get caught up with all our new members, and hope i can help with any advise or support! Im sending encouragement to those of you struggling…. you can be cured! hang in there! Don’t give up! Love and prayers!
Pamela
Angie Phillips

Saturday, 26th September 2009 at 9:08 am

Hi All - Long time no posts!!!!

Like Pamela I havent had any posts since 5th August so am very behind on all the news! The site looks great? Is it automatically subscribed because it lost me!

To all the new people I found this site in 2007, and was the first to write on it. It has been a fantastic help and comfort. Many people have passed through it before, during and after their op. Many of us still view and write hoping to help with any info that we can.

Angie - and im still around and about!
Charlotte

Saturday, 26th September 2009 at 2:55 pm

Hello everybody!

I am now happily insulinoma-free and hopefully ba ck in my home in just a few days :-)

I was in surgery tuesday 22th Sept for 3 hours and the Norwegian specialist and the Danish upcoming specialist did a wonderful job. My insulinoma could be enucleated with just a few clamps and two stiches and I was awake already in the surgery
Charlotte

Saturday, 26th September 2009 at 3:17 pm

sorry for the half-post:

Hello everybody!

I am now happily insulinoma-free and hopefully back in my home in just a few days :-)

I was in surgery tuesday 22th Sept for 3 hours and the Norwegian specialist and the Danish upcoming specialist did a wonderful job. My insulinoma could be enucleated with just a few clamps and two stiches and I was awake already in the surgery

I have 3 small inscicions and one hole for drainage. It drains very little but I had a fever yesterday and a little bit today so they are checking the amount of enzymes in my drain and also my blood for various infections.

I am already on a minimum of pain killers but I have to get something extra for this night as I have diffilculty breathing right when it hurts too much.

I am extremely grateful for the fine treatment I have had in the surgery department and the best of it all is of course that MY BLOOD SUGARS ARE NORMAL !!! They were high the first days but falling quickly to normal level.

To all of you on this list waiting for diagnosis and surgery - keep faith. I hope for the best for all of you.

Best regards
Charlotte
Marylin

Saturday, 26th September 2009 at 6:54 pm

April

Thanks for the warnings about the photo’s at the top. I did not look at them because I didn’t know what they were.

Charlotte,

So glad you are doing so well and so happy you are insulinoma free now. “YEA”! Thanks for sharing with us about your surgery. It is a big help for us that are still waiting for the surgery.

Pamela,

Nice to hear from you and thanks for your encouragement.

Blessings to all,
Marylin
Kim

Sunday, 27th September 2009 at 7:16 am

Hi everyone. Just realized that things couldn’t be THAT quiet on this site … and indeed they werent, just a format change I guess. I have a lot of catching up to do!
Jackie

Sunday, 27th September 2009 at 10:00 am

Charlotte

I am so glad this horrible disease is over for you. It sounds like all went well. I had fever the first day and it was because I did not inflate my lungs enough. Be sure to breathe really deep and cough. It know it will hurt but just support your abdomen and do it. I stayed up most of the night working on deep breathing, had a night sweat and my fever broke. I had high sugars for two days post op and my surgeon refused to let them give me insulin. She said to the staff you have no idea what this gal has gone through, no insulin!!!. I was back to normal by day three and have stayed right there. It is great to see your post and I wish you a speedy recovery.
Janet

Monday, 28th September 2009 at 6:43 am

The new format has thrown me a bit, but good to see the site going, having such an unusual illness, its this kind of site that is a God send to all sufferers. Love to all.

Janet
April

Monday, 28th September 2009 at 7:32 am

The pictures are better now. As much as we think about the pancreas, I don’t think any of us really wanted to see one. Thanks to whoever or whatever controls that part of the site.

By the way, I am just over two months from surgery and feeling great. I feel almost back to normal and am definitely living a normal life. Good luck to those still working on a solution and know that time moves quickly at least when you look back on it.

April
Jon Mikel Iñarritu

Wednesday, 30th September 2009 at 3:19 pm

Dear readers and creators of UnboundedMedicine. Most of us are experiencing difficulties in receiving notifications of new comments. This was my mistake (since I’m not a programmer) because when I upgraded the blog’s version I didn’t notice that I haven’t re-activated the plugin “subscribe to comments”

I don’t know if its already fixed, please let me know. Maybe you will have to subscribe again.

I’m so sorry for this inconvenience.
Jane

Wednesday, 30th September 2009 at 4:26 pm

Jon Mikel,

Aa haa! I wondered what had happened to the notifications. Good to have it back.

Jane
Jon Mikel Iñarritu

Wednesday, 30th September 2009 at 4:27 pm

Thank God!!! ;)
Jane

Wednesday, 30th September 2009 at 4:30 pm

PS It kept asking me to sign into Twitter but I just ignored it and carried on. It seems to have worked.

Jane
Karen

Wednesday, 30th September 2009 at 6:56 pm

Is something wrong with this page. I have not
got any information in several months.
Jackie Gray

Thursday, 1st October 2009 at 5:41 am

Thanks so much for the update on the site.
John

Thursday, 1st October 2009 at 2:58 pm

I think the site is working correctly again… I hope so for all our sakes. It is an absolute life-saver!

Good luck to all

John
Sue

Sunday, 4th October 2009 at 12:14 pm

I’ll ask again. Maybe my last post wasn’t seen well as I see everyone talking about not getting updates. I just joined a couple of weeks ago, so don’t know what the original format was like.

My question is, is there anybody with an insulinoma that COULD make it through the night without having to eat? I just have trouble all morning keeping my blood sugar up, but as I eat, eat, eat, later in the day I have less trouble.

The second question is, I read that they can use an indwelling catheter to test for insulin release when exposed to calcium(calcium stimulation test). Has oral calcium ever caused anyone to have extra insulin release, causing extra problems with drops in blood sugar?

Thank you all, This place, with people who have experienced insulinomas, is a WEALTH of information!
Kim

Sunday, 4th October 2009 at 12:40 pm

Hi Sue,

I think things are getting back to normal with this site. My experience was that as my tumor became more “mature”, I had to be more diligent about eating. At first it was mostly stress and physical activity that brought about a low that evolved over a period of about a year and a half to the point where I had to eat during the night or I wouldn’t wake up in the morning and I had to eat every two hours just to “keep my head above water”. So the symptoms change over time and from day to day, but with the gradual result that the tumor seems to be producing more insulin on a more steady basis as time goes on.
Angie Phillips

Sunday, 4th October 2009 at 1:07 pm

HI Sue

I never ate during the night, however I never knew I had this condition until a year before my diagnosis. I think if it had been any longer i would have had problems. I used to wake in the night with profound sweats completely drenched - this is one of the problems that led me to go to the doctors - this was a symptom of extremely low blood sugar and it was my bodies way of warning me before I got to the stage of not waking. I also have to say I was dieting, on Slimming world but high carbs for many years, although I was having trouble losing weight I was also eating the best thing to keep my blood sugar level. (ha ha level isnt the actual word but I would have had far more severe trouble if not)

I had a catheter calcium infusion test if that is what you are talking about. They insert a tube into your veins in the groin and pass it up to other major vessels to release calcium near the liver and pancreas to test if and where more insulin is produced. If it is produced anywhere other than the pancreas it usually means you have rogue insulin producing cells or insulinoms in other parts of your body. This would be detected by having a full body infusion test.

As far as I know eating calcium does not increase low blood sugar, a bit unsure of my facts here but I would imagine it has to be a concentrated amount to stimulate insulin production otherwise they would be able to test orally rather than surgically. This would be unreliable due to the other foods ingested and would not be able to detect where the insulin was being produced.

All good stuff tho and very clever, I was awake during it and saw the wires on the screen releasing the flow of calcium near my liver and kidneys and pancreas.

As Kim says the symptoms do change the bigger the insulinoma gets - towards the time my op was due I had a few very odd times - losing time and feeling very bad, very shaky and would suffer hot sweats specially after any exercise. My normal sugar levels were 2.2 (UK system - cant remember the conversion but 1 here is coma, my lowest was 1.6 and I was still walking around) I believe because I had had this for 10 years my body could cope with very very low sugar but it was pushed over the edge when i started more regular swimming and training.

I do go on - sorry - anything you need to know just ask someone will help!

Angie
Nicolai

Sunday, 4th October 2009 at 2:06 pm

Great to have the updates back!

Sue,

My symptoms have generally been pretty mild, and I have never had any problems during the night. At my 72h fast, I lasted 2½ days, which I think is quite long compared to others. My blood sugar was 1.7 mmol/L (or 31 mg/dL, just multiply by 18) at the end though. I think perhaps having had the condition for so long (over 8 years I believe) has made me more used to low levels.

I am still awaiting more tests, as they are unsure if the growth the have found on my pancreas (through EUL, MR anc CT scans) is in fact the insulinoma. It probably is, but they want to be extra cautious.

I believe you will find other posts by people, who have not had such severe symptoms that they had to eat or get assistance during the night.

Best of luck,
Nicolai
April

Monday, 5th October 2009 at 12:28 pm

Sue,

I often could sleep all night but occasionally would wake up and need to eat in the night. I usually had problems in the morning if I didn’t eat right away or a couple hours after any meal if I didn’t eat something. My blood sugar drops were not consistent as to time of day. Have you tried eating a really good breakfast including protein and carbs? If you do and still have blood sugar problems, then you have a problem.
Jane

Monday, 5th October 2009 at 12:48 pm

Sue,

I was actually told by my specialist to set my alarm to wake at 2 or 3 in the morning and eat and drink something because one morning, if I did not, I may not wake up. He said your body just adjusts to those very low levels but there comes a point where it doesn’t cope and off you go into a state of unconsciousness. So I ate every couple of hours throughout each and every 24 hours. I was even taking diazoxide at the time as well. I am well now and my life is great, I cannot believe how I dragged myself through each day before I finally got the diagnosis.

Jane
Laura

Monday, 5th October 2009 at 1:51 pm

Sue, I never set an alarm or anythign to wake up at night to eat. I would keep granola bars or protein bars on my nightstand for when I happened to wake up. I did wake up with low blood sugar every day and that probably would have been avoided by eating during hte night, but I decided sleep was more imporatand and I just ate every morning right away. Good luck!
Laura
Peggy

Monday, 5th October 2009 at 6:37 pm

I may as well add my two cents..For years my poor hsband had to wake me up and give me milk one or two times a night. (it was too hard trying to get me to chew anything when I was out of it.). For a while I woke up through the night on my own and knew my sugar was low but could feed myself. Some months I would wake up in the morning fine without eating through the night . Then there were more than a dozen times I woke up with a bedroom full of paramedics. And three times I went to sleep and woke up in the hospital! I was lucky I woke up at all! It’s not only different for everyone, but different even for one person! Crazy ,inconsistent disease. Glad it’s all behind me! I trust it will be for you as well.

Peggy
Marylin

Monday, 5th October 2009 at 10:11 pm

Hi All,

I have not been on for a while but I have been reading you post’s just about every day. I have been going back and reading from the start of this blog. It all is very helpful to me trying to figure out what is going on.

I am trying to get ready for my trip to Mayo and gathering info and questions to ask up there. I see my doctor up there on the mornning of the 19th and see the surgen on the 21st. I guess my doctor’s down here think their is an insulinoma and from the way they have set up the appts it looks like the doctors up there think that is what we are dealing with. I have a lot of the symptoms you all talk about.

Angie Phillips
I was so glad to hear how they do the cal. test. I have been thinking they will be doing it on me to find this little devil. I am afraid of the test and the way you tell it I think I can handle it.

Sue

It looks like you got a lot of answere’s. It is good to see so many sharing what they have gone through.

My husband still thinks I can learn to live with this. If it is just plain Hypo. I will have too but if it is the insulnoma I think I want it out of me.

Well I hope you all are enjoying the fall and getting ready for all the holiday’s comming up. I’ll keep you posted as to what happends on my trip.

Bless you all, Marylin
Angie Phillips

Tuesday, 6th October 2009 at 5:14 am

Marylin

Its all very well to say ‘live with it’ but it gets worse! the symptoms do not stay the same as the tumor gets bigger which it probably will the more insulin will be produced and more damage is done to your body. For the body to operate on continual low blood sugar things like migranes get worse. My sight was affected occaisionally , my hair went very thin and my skin and nails suffered. I didnt know why any of this was happening but the difference after my op with normal blood sugar has been amazing. Also the diazoxide tablets that I took to help balance my blood sugar gave me horrible water retention and they said I was too young to contnue on medication as my problems were quite bad to start with.

It can also turn cancerous, only 10% are but who knows. And are you willing to chance it?

Its a frightening thing but I think everyone who has been through the op - whipple or not - will say they wouldnt go back to that life.

Angie
Janet

Tuesday, 6th October 2009 at 6:46 am

Hi All!
Well as some of you on her know I have insulinoma twice and they have both had exactly the same symptons, have behaved the same, but I have had to deal with them differently. The first I had removed, along with part of my pancreas and all of my spleen. With this insulnoma, I often was in a coma in the morning and had to be woke up by glucose being put on my lip and spooned into my mouth. It was hell. I had some good days when it seemed like there was nothing wrong and then other days when I was away with the fairies. Eventually I fell asleep on a bus , and I eventually woke up in a hospital having suffered a very severe hypo,being only 0.4. The second insulinoma many yers later which I have now is being ongoingly treted with large amounts of diazoxide. The medication does work even though I dom have a few bad days; and nights!! Anyway, I have learned to live with it, I have had to. Its possible if you can take diazoxide, but it does mean you have to live the rest of your life differently to if you are insulinoma free. After my first op, I had my life back as I had once knew it, now I have to accept the limitations I have. I have loads of tips on how to cope but it would be a book rather than a thread on a forum! LOL! Anyway, if you can have it removed go for it, you can more than likely go back to whatever normal is. Good luck and love to all.

Janet
Sue

Tuesday, 6th October 2009 at 9:17 am

Wow! Thanks to everyone for their story. I have been fighting low blood sugar for probably 15 years. I handle it by eating every two hours. Lately, though, it seems like that isn’t quite cutting it. The low b/s creeps up on me anyway. I have had a few mornings in the last 6 months where I have the HARDEST time opening my eyes and actually waking up. I didn’t think until recently that maybe my b/s was too low. And, I have been having night sweats that I assumed were menopause, but now I wonder if my body is reacting to low b/s and trying to bring it up. When I do a fasting b/s and insulin, they are always normal: b/s around 85 and insulin around 8.8. Has anyone at all with an insulinoma have a GTT that sent their sugar AND insulin up into the 170s, then the precipitous drop into the 50s? I know that sounds like reactive hypoglycemia, but like I said, it was controllable until recently. Now, eating is my goal everyday. I have tried going on a low glycemic diet(in case it for sure was reactive hypo.), but the less sugar I have in my diet, the more hypo I get. None of this makes sense to me.
Nicolai

Tuesday, 6th October 2009 at 9:44 am

Hi Sue,

I have never taken a GTT (I assume that stands for glucose tolerance test), but I wouldn’t think it is so relevant in regards to an insulinoma. As many have written before, a supervised 72h fasting test is the way to get a diagnosis for an insulinoma. If insulin, proinsulin and c-peptid are elevated when your blood sugar gets very low, then you can be pretty sure it’s an insulinoma.

I have taken a few “normal” fasting tests, and none of these looked very odd in themselves. My blood sugar was low, but normal, and insulin was high, but normal. Not until they fasted my for 2½ days did my blood sugar get critically low, while my insulin etc was way higher than normal ranges. I think it varies how and when these insulinomas are active, but a “normal” person would not have elevated insulin etc after fasting and while having low blood sugar.

With your symptoms I would definately ask for a 72h test. For most “insulinomiacs” it doesn’t last very long anyway.

Good luck!
Enola Wright

Tuesday, 6th October 2009 at 12:08 pm

I have an malignant insulinoma with metastatic spread. Insulinomas do not turn from benign to cancerous tumours. My consultant, who is one of the World leaders in this field, assured me that it is an either benign or malignant tumour. And that only 5 to 10% of all insulinomas are malignant.

A very useful guideline on insulinomas can be found at: http://gut.bmj.com/cgi/content/full/54/suppl_4/iv1
Sue

Tuesday, 6th October 2009 at 3:49 pm

Who will most likely perform a 72 hour fast-an endo or a gi doc?
Laura

Tuesday, 6th October 2009 at 4:00 pm

the fast is either done at your endo’s office or in a hospital depending on your endo. the endo would normally order it.
Sue

Friday, 9th October 2009 at 12:42 pm

O.k. My blood sugar just dropped to 40 and scared the cr@p out of me! I usually “feel” all of the symptoms when it gets in the 50s, and this time I calmly told my husband that I feel like I’m going to pass out. I sat down, then noticed my hands were shaky, so immediately it dawned on me to take my b/s reading. At the same time all of my other usual symptoms kicked in-getting HOT, anxiety, irritable. Sure enough, it was at 40, the lowest I’ver ever had. I didn’t eat anything abnormal, all my usual morning stuff. I have had hypoglycemia for YEARS, but lately just can’t seem to control it. I think I’m going to demand a 72 hour fast, although I did find an article from the Journal of Clinical Endocrinology & Metabolism(vol.91, No.12) that two patients showed reactive hypoglycemia on GTT, did not drop during the 72 fast, BUT did have an insulinoma. I will have that to “bargain” with if they brush me off as reactive hypo.
Sue

Friday, 9th October 2009 at 7:22 pm

Talked to the doctor and he wants me to try acarbose(?)-something that keeps your body from absorbing carbs. To me that sounds counterintuitive if there might be an insulinoma, but I will be sure to have some glucose tablets on hand, as I read that it prevents sucrose(cane sugar) from being absorbed. This could put me in a bind if I need to raise a low, so I’ll buy the glucose tablets for an emergency. Oh well, it might show one way or the other if I need sugar in my diet.
Jon Mikel Iñarritu

Friday, 9th October 2009 at 7:25 pm

Sue: What? Never heard of that kind of treatment. You should ask for another opinion. Please ask for a second opinion before you start this acarbose treatment….

W.T.F.?
Jon Mikel Iñarritu

Friday, 9th October 2009 at 7:30 pm

Sue: I mean, one thing is to have Non-insulinoma pancreatogenous hypoglycemic syndrome which is featured by hypoglycemia immediately after eating… but that’s not your case.

My recommendation is to ask for another opinion.

Best of all,
Jon
Sue

Friday, 9th October 2009 at 8:01 pm

That was exactly my thinking, but I’m pretty sure my endo thinks I just have reactive hypo. He tested my fasting glucose(82?) and insulin(8.8) one time and has never done any other testing. He is getting ready to refer me however to a reputable southern institution, so just waiting it out. I’m sure I’ll get all the right attention when I get referred there. Oh well, if I get low enough to call an ambulance because I can’t get my sugar up, at least it will prove what’s going on.
Jon Mikel Iñarritu

Friday, 9th October 2009 at 8:08 pm

Sue: I don’t think the wisest decision is to wait for an ambulance to prove that you have insulinoma.
Did he ordered you C peptide? Or maybe a 72-hour fast test?

I’ll wait and ask for a second opinion, Sue.
Take care!
Sue

Friday, 9th October 2009 at 8:20 pm

No, he has not ordered a c-peptide or a 72 hour fast. And he is an endo that specializes in diabetes, so he’s supposed to be knowledgable about sugar issues. I had been seeing him for thyroid issues for the last 10 years, and just recently asked him to address my increasing hypo episodes. I am a little unsettled also on using the acarbose.
Kricket

Saturday, 10th October 2009 at 5:54 pm

To Sue and Jon Mikel Inarritu Sat, Oct 2009 My name Is Kricket and I just read your post and I also have been told I have a possible insulinnoma and my doctor does not seem to want to do any test, she put me on Glyset and that is in the same family as Acarbose and I have been taking it for about two month, . I find that I have alot of nausea and vomiting . i informed her of this and she increased the dose and has ordered upper GI and ultrsound of my gallblader so my thoughts are if I can have these test way not the Cpiptide or 72 hr. fast. is there a doctor out there that can help us? I feel so flustrated that I just want to give up ( my lowest bs has been 19. thanks for any input and thank you for this website. hoping to hear from you. Kricket
Sue

Saturday, 10th October 2009 at 7:32 pm

Kricket-glad to hear your story. Did the Glyset change your b/s at all, either in a good way or bad way? I’m scared it’s going to give me more lows. It sure sounds like if you started with nausea/vomiting with the meds, and he wants to test, he should be doing the c-peptide and the 72 hour fast for sure. I don’t know why he wants to waste his time looking at why the n/v issue. This does get so frustrating. I told my doctor I’ve handled this for 15 years, and something has changed-it is very hard to manage now, and he just doesn’t understand how this is taking over my life. I have snacks in my house, in my purse, in my car, and can never be caught without food.
Geraldine Hanglin

Sunday, 11th October 2009 at 4:29 am

Hi Everyone. I am so glad I have found this forum. I had my pancreas and duodenum removed in January 2009 due to 4 Insulinomas, the biggest one was 4.9. Due to this op I have been made a diabetic and I am finding it very hard to control my sugars as I have no insulin whatsoever. I would appreciate if there is somone out there with my same problem to write back to me. The only person I could speak to before my operation was your friend Angelique Acolina, who sadly died a day before my op. She was very kind to me and would always give me advice, although my operation was completely different to hers.
Kricket

Sunday, 11th October 2009 at 9:15 am

Sue The glyset did seem to help with the waves of highs and lows. I had to start off with 25mg and slowly increase dose. I can now eat without the bs going sky high an then dropping into the 40 or below ( it seems to keep me level ) I still have systems from time to time but in all I guess it is better with the medication, I do crave carbs more with this medication but have been able to lose five pounds of the twenty five I have gained this past year.(so thats a plus) Do let me know if you take the meds and how you do. I wish you the best and like all of us hope we found a cure not just a bandaide to get us threw!! Kricket
Sue

Sunday, 11th October 2009 at 2:13 pm

I took the acarbose (1/2 pill) with breakfast and 1/2 pill with lunch. Thought everything was going ok until I just checked it(I’ve been checking it often all day). It was at 56 and I hadn’t dropped enough for symptoms yet, so I can imagine it was going lower and I caught it early. Shouldn’t that prove that I NEED sugar in my diet?!?
Laura

Monday, 12th October 2009 at 10:17 am

welcome all you new comers! One thing all of us have in common is not many medical people take what we have seriously. This forum is a great place to figure out what you need to do. Then you go to your doctor and tell them what you want to do. I can’t even count the number of different medical people that told me to fast before a procedure like an MRI, How stupid to tell someone with an insulinoma to fast, but they do and they do it all the time. Before my surgery, my surgeon’s instructions included no food for a significant amount of time before surgery, when I called him to confirm telling him I would probably be dead before surgery if I did what his orders said, he agreed and revised the entire plan for me. Bottom line, even those who deal with victoms of insulinoma still do not know how to deal with it. You need to educate yourself and take care of yourself. Ending up in a coma or passed out to prove a point, only hurts you (and they still won’t take you seriously!)

Good luck!
Sue

Monday, 12th October 2009 at 10:57 am

Laura,

I know-but I had to do this “test” to prove to my doctor that it wasn’t going to work. I was prepared with glucose tablets, my husband around the house, and checking my blood sugar every 30-60 minutes, waiting for the drop. Boy, it is hard when you are a “zebra” patient for doctors to take you seriously and think outside the box. I appreciate this place where I can read everyone’s story, treatment, and eventual success. It thrills me when people say they can finally skip a meal!!! I’ve forgotten what it’s like to have my stomach growl from being hungry.
Geraldine Hanglin

Monday, 12th October 2009 at 6:17 pm

Hi everyone.

Is there anyone out there who has had their entire pancreas removed like me or has been made a diabetic because of the op?? If there is please please write back to me so we can exchange points as I’m having lots of trouble controling my sugars. I NEED HELP PLEASE !!!!!
Marylin

Tuesday, 13th October 2009 at 6:08 pm

Hi All, Have been reading all your blog’s and I thought I knew how a 72 hour fasting test went but now I am not sure. Can someone tell me what they do? I am pretty sure I had one many years ago but don’t remember how it went. I just remember calling the nurses station and telling them I felt like I was going to faint or something and they told me to be sure and not get out of bed???? This was when I was in the hospital for test.
I go to Mayo on Monday to meet my doctor and I think start test. I kinda want to have some idea of what to expect.
Thanks, Marylin
Laura

Wednesday, 14th October 2009 at 10:01 am

Marilyn, all of our 72 hour fasts have been different. Mine was done in my doctor’s office. I went first thing in the morning without eating (my husband drove). When I got there, he did a blood draw and we checked my sugar on my monitor, we waited an hour, he did a blood draw, I checked my sugar (sure enough it was still going down), we waited another half hour and same thing but by that point I was too low so it was over.

Others have gone into the hospital where they make them eat first so that makes the test take a lot longer. Pretty much, bottom line it is just waiting for your sugar to drop without doing anything to cause it to drop.

Good luck!

Laura
Marylin

Wednesday, 14th October 2009 at 3:08 pm

Laura Thanks fpr the info!
Jackie Gray

Wednesday, 14th October 2009 at 8:27 pm

Geraldine,

I did not have the entire pancreas removed so will not be any help. Hopefully someone else can help you. Hope it gets better for you soon. I know they told me I could live without mine but would imagine it would be hard to regulate insulin with your food intake. Hang in there.
April

Friday, 16th October 2009 at 11:29 am

Marilyn,

Good luck at Mayo next week.
Marylin

Friday, 16th October 2009 at 10:59 pm

April Hi Thanks

I posted about an hour ago and I don’t see it?

Well Ron and I will take off at 6am in the morning and I report to Mayo at 6:45 Monday morning. I will see Dr Service and I guess have some test on Monday. I am to fast prior to appt. If they find the insulinoma I will see the surgen on Wed and have surgery next week sometime.

Thanks to all of you that take the time to share your story. It is so helpful to us. God bless you all.

Marylin
Jackie Gray

Saturday, 17th October 2009 at 2:27 pm

Marylin, I wish you a speedy a safe trip and a speedy diagnosis.
Geraldine Hanglin

Sunday, 18th October 2009 at 6:40 pm

Jackie thanks for your reply. There doesn’t seem to be anyone out there that has had a full pancreas removed. Well thanks anyway I’ll keep on checking
Stacy

Tuesday, 20th October 2009 at 3:27 pm

I haven’t been on this site in a long time. Last year I was in the hospital several times due to hypoglycemia. I got sick in March 09′ and now I am dropped extremely low again. I have had two 72 hr fasting tests and my sugar dropped as low as 37 but Dr. said no insulinoma. My doctor told me I am going to have this condition for the rest of my life and I have to live with it. I am not content with that answer. I am a 34 year old woman with a 4 year old little girl and a husband. I don’t want to live my life not knowing from day to day what my sugar will do next. Last Monday my co-worker called the ambulance because I became incoherent in my car. I wish there was a doctor that would tell me more than- You will just have to live with this condition and tell me to chin up. I am praying for concrete answers. It is difficult.
Laura

Tuesday, 20th October 2009 at 3:49 pm

Stacy, If I was you I would find out why your doctor thinks you do not have an insulinoma since your sugar dropped. What else is he looking at. Post his answer here and see what others say. It sounds to me like you need another doctor…..
Jackie Gray

Friday, 23rd October 2009 at 10:49 am

Stacy, I agree with Laura. I can’t imagine what else could be going on. Ask more questions. Research your symptoms. Take your own blood sugars during the day to establish a pattern against what you are eating. Is your doctor an endocrinologist? If not, you need a specialist to look at your condition. Hang in there and don’t give up. You do need a better life for your family.
Peggy

Saturday, 24th October 2009 at 4:52 pm

Stacy,

I’m sorry you are still going through this! I don’t remember hearing what Dr. Singer from USC told you last. As I remember after you saw him and he told you that your blood work did not show an insulinoma, you were going to call him back and ask some questions…Like how sure is he?? Was your insulin really low? Could the 72 hour fast have not been done correctly? I remember that I was once told that I could have hyperplasia, I think that meant that All my insulin producing cells were overreacting…could be your case I guess, but I also know that some of my endos didn’t think my 72 hour blood work proved an insulinoma. Turns out they were wrong! I got to the point where I would not let my endo at USC tell me that I had to live with it. I think they just got tired of me and finally requested that my insurance let me see the surgeon as a last resort to see if he had any recommendations. Thank heaven he found it and offered to removed it that week! 15 years! If my endo did not send me to the surgeon, I would still be living as you are. My advice would be to constantly call or make appointments with your GP and tell her how terrible you feel. Get it all on record! They cannot ignore you forever…it just feels like forever. If you’d like, look me up on facebook and I’ll send you my phone number.
Kricket

Tuesday, 27th October 2009 at 3:11 pm

Sue Just wondering how you have been doing on the medication. Hope maybe it helped some but I know you feel like I do, you had rather have the problem fixed for good. Wishing you well hope to hear from you. Kricket
Marylin

Wednesday, 28th October 2009 at 7:03 pm

Hi to everyone.

Well I am back from Mayo Clinic. No surgery at this time. The doctor said from what he could see with the test that he did along with my symptoms, he is 70% sure it is not an insulinoma. He did not want to do the calcium infusion test at this time or any surgery.
I am not sure the name of the condition but it may be (neuroglycopenia) it is brought on by the type of bariatric procedure I had in 2002 for weight loss. It causes the reactive hypoglycemia. It is a condition that does not show it ugly head until two to five years after surgery. A while after you stop seeing your bariatric surgen. The severe drop in blood sugar is potentially dangerous as you all know.
My blood sugar goes low in the 29 and 30’s and my insulin goes high and I get all the same symptoms as you would get with an insulinoma except I cannot eat sugar and I feel better if I don’t eat. It can be potentially dangerous. You can black out with out any warning. I am not there yet so for right now I am in limbo. I don’t like it.
I have not heard from my endrocrinologist yet . The doctor at Mayo said he was sending her the findings along with the name of medication I could take to help me. He felt that the symptoms are not bad enough right now. What he did tell me is that I might at some time have to have my pancreas partial removed or most of it depending on what the calcium infusion test results show. It is producing way too much insulin for my body to handle.
Again my doctor is only 70 sure that this is not an insulinoma and given the fact that sugar makes me sicker rather than better I have to go with his judgment on this for now. I will see my endrocinologist on Nov.20 and hope to find out more. I really hope she calls me before that appt.

I do want to thank all of you for your help and support. I am keeping you in my prayers. I will keep reading to see how you all are doing and I will let you know how things go.

Marylin
April

Wednesday, 28th October 2009 at 8:22 pm

Hi Marylin,

I have been thinking about you this week and hoping that all was well. I am glad you did not have to have surgery yet and also missed out on the calcium test. Hopefully the medicine will work and you won’t have to have the dreaded surgery. Good luck and so glad you are home safe.
Marylin

Thursday, 29th October 2009 at 7:00 am

Hi April,

Thanks for your thoughts. I am glad I did get a conserative doctor that was not in a hurry to jump in and do surgery. I so like the doctor I had. He was so kind and such a gentleman. He reminded me of the doctor I worked in the office with back in 1959.

Have a blessed day
Marylin
Sue

Saturday, 31st October 2009 at 4:44 pm

I took my acarbose, and I don’t really know if it worked or not for sure, but I didn’t have any symptoms of low blood sugar. HOWEVER, I did still eat about every two waking hours. I just got some basic labwork copies back from my doctor the other day, and my nonfasting glucose at 10:45 a.m. was 39!!!!
I was kind of nervous at the doctor’s office and had brought a muffin in my purse, and I remember eating half of it AFTER the blood was drawn because I was worrying about having not eaten for almost two hours!! Does this sound like an insulinoma?? I’m going crazy with this darn dropping blood sugar.
Debbie

Sunday, 1st November 2009 at 4:47 pm

Hello all…I am new to this site but have found it to be extremely helpful. I had insulinoma and on June 11th underwent the “dreaded Whipple” surgery. All is going well, although the recovery has been slow. Anyway I wanted to share my story.

About 2 ½ years ago I had my first “episode”…I was down in Florida taking a long morning walk on the beach when I began to feel “woozy”…before long I felt like I was drunk. I sat down and somehow recovered enough to get myself home. I passed it off as not having had any breakfast. Time marched on with no further episodes…at least none that dramatic.

Last fall things began to worsen. In October I had an episode….again I blew it off as I had had minimal food that day.

Saw t my OB/GYN last December and he requested a fasting blood test. My husband and I went down to Florida for Christmas and I got a call from the doctors office telling me that I had best see my internist as my blood sugar was low on the test …it was 29. That meant nothing to me…I didn’t know how terrible that was. I was not going to be in St Louis until early April, so I made an appointment with my internist, who thankfully is also an endocrinologist. Before I saw him, I had my scariest spell. I had had a good breakfast and went to work with my garden club for a couple of hours in the city park. Leaving there all was fine…the next thing I remember was that I was in a grocery and the world was spinning….I finally figured out where I was, and this is the scary part…I found my car and drove home. I had no sugar feeding my brain so was not thinking rationally, to put it mildly. The thought that I could have killed someone while I was behind the wheel in that state really shook me. The “episodes” seemed to be on the increase during the last few months before surgery. Despite keeping food in me and power bars in my purse, I believe my body was just telling me it had had enough.

Anyway, underwent the surgery in June, following numerous tests to locate the exact location of the tumor…it was on the head of my pancreas, and Whipple Surgery was the solution given its location. I went in the hospital the night before the surgery so that they could get me on a glucose drip. (Otherwise had I arrived the morning of the surgery, we risked my blood sugar being too low to operate, thus delaying the 7am operation, …got this idea from an earlier post). I got an epidural, which I kept for 5 days, before the surgery began. That was a blessing! Surgery lasted 7 ½ hours…no complications…stayed in the hospital for 8 days then went home,

I had a stent in me for 3 months in case any complication with the bile duct reconstruction took place(it didn’t)…Stent was annoying, but not uncomfortable. The worst part of the whole deal is that I had never slept on my back in my life . After the surgery, that was the only way I could sleep for a long while.

Recovery was slow and I am a rather impatient patient. It took 3 ½ months to really start getting back to normal, stamina wise….My core muscles need some work, but that will come with time! I had gained 20 pounds in the 2 years preceding my operation and couldn’t lose a pound to save my life. Since the surgery I have lost over 30 pounds , but it took several months for my stomach to “go down. All in all, I am glad I had the operation and that the insulinoma is behind me. My fasting blood sugar isnow in the normal range and it looks like I will not need insulin.
Sue

Monday, 2nd November 2009 at 11:50 am

Debbie, thanks for your story. I wish we could have more people chatting on this forum, like actually discussing this during the day like other forums. But, not many people write anymore like they used to. I have questions I like to ask of people’s testing, but then there is no one here to answer, or they read it weeks later. And so far, this is the only forum I can find on the internet to talk to people about an insulinoma. By the way, I fight low blood sugar but am not diagnosed with anything yet.
John

Monday, 2nd November 2009 at 11:55 am

Hi Debbie and thanks for the report on the success of your big operation and longterm recovery. Good luck over the next few weeks and months - and congratulations.
You went through all this so swiftly and fully without finding this site - and you did so well! You had good advice and help along the way from enlightened people.
This will encourage many who are struggling to get diagnosis and treatment. Never accept any unclear answers. There is a solution to the horrible, frightening symptoms, however drastic it might seem at the time.
My story was posted way back in January of this year and I can say that my recovery has been complete and uncomplicated except for the post-operative abscess which set me back a few weeks. I too am not insulin-dependent, my pancreas simply switched back on properly. I can eat when I want but must still observe my gluten-free coeliac diet. I can travel - most recently to Istanbul and Canada. My fat belly has subsided almost back to pre-insulinoma proportions - well, nearly… Not bad for 60 years old anyway!
Life is sweet…

My good wishes to all who are suffering and to all who are recovering. I shall never forget 2009!

John in London
Charlotte

Monday, 2nd November 2009 at 12:27 pm

Dear Sue

I think you should just go ahead and ask all your questions. I am sure you will get answers in only a few days if not immediately :-). All of us know the problems about fighting low blood sugar.

Welcome to Debbie. Good to know that you are behind it all now and are feeling well.

Take care
Charlotte

(just went through laparoscopic surgery 1 month ago and back on my feet again now fighting a really heavy overweight)
Laura

Monday, 2nd November 2009 at 12:44 pm

Sue, that is too bad you feel that way. The site was down for quite some time, but since it has been back up, I feel like people are responding very quickly. What questions did you have that have not been addressed?
Laura
Jackie

Monday, 2nd November 2009 at 7:52 pm

Debbie
Welcome to the site and good to hear your Whipple went well. I too had surgery last January and other than not taking care of the weight I gained the last year I am doing fine. Each day I say I am going to diet but by the end of the day I need comfort food. I no longer have insulin issues and life is good. Mine was on the head of the pancreas and they thought I would need a Whipple but made it without one. Boy, the stents were no fun. I had leaking of the pancreatic duct and they had a hard time getting my stent in.

Sue
Please ask your questions. We want to be a support to you as this site has been to us. We may not know the answers but we are all happy to share. It may not be answers immediately but I think we all check in fairly often to see who has posted.
Sue

Tuesday, 3rd November 2009 at 5:30 pm

Nooooo, please don’t take what I said the wrong way! I meant it in a good way that meant I wish there was more traffic here. But I understand people with insulinomas are RARE, so there wouldn’t be as much traffic here as, say, my thyroid forum where everyone and their brother has a thyroid issue! I definitely only meant that I was sad that there was no new messages every 10-20 minutes, that’s all. I still go back and reread alot of the posts, catching things I missed on my reading before.
All these years I just think it is normal for ME to be eating every 2 hours, and carrying sugary foods in my car and purse, or going to kids sports games and making sure I have food with me EVERYWHERE I go!! When I read these posts, it makes me see that, yea, there are other people like me that have food all the time, but they all(or most) have an insulinoma! So, that makes me think that I really need to go through the 72-hours fast.
Sue

Tuesday, 3rd November 2009 at 5:37 pm

I do have a question about testing. Has anyone had a waking fasting blood sugar that was NOT low, but fought with dropping sugar all day after meals?? See that’s what I have-with 12 hours of fasting overnight, my b/s is not low, but don’t know if/when it would start to drop as I don’t waste time and start eating when I get up. I’m afraid a doctor will tell me that I HAVE to have morning fasting b/s low, or I just have reactive hypo. I guess there is a 72-hour fast for a reason, huh?-so people like me that don’t drop overnight will eventually drop and show it?
Susie

Tuesday, 3rd November 2009 at 8:48 pm

Hi Sue,
When I woke up in the morning my blood sugar was never extremely low. Maybe around 60. When I did the 72 hour fast my blood sugar wouldn’t drop below 40 until 3:00 pm the first day of the fast.
That’s when they draw your blood and test you for proinsulin levels and C peptides.
I did have a insulinoma, they found with the endoscope. Good luck. I’m glad I can post messages now. I couldn’t for the longest time. Thanks for fixing the problem Jon!!!
Jackie

Tuesday, 3rd November 2009 at 9:02 pm

Sue
I started with fasting sugars that were gradually increasing and within 6 months they started to drop and my insulin levels were rising. The last was a fasting sugar of 42 but an insulin of 45. So I was producing insulin when it was not needed. But it came on very gradually. I was lucky to research the symptoms, came across the insulinoma, and when I saw the endo that was his first thought. I was fortunate it showed up on the first scan. I did not have a fasting test at all. They did my CT scan from the symptoms. I had symptoms for a year that started out very sporadic and gradually increased in instances and also became more severe. Keep searching for answers.
Geraldine Hanglin

Wednesday, 4th November 2009 at 2:48 am

Hi Sue

I understand how you feel because I feel the same way too. Let me tell you a bit about me. I suffer from MEN1 this is a disease that affects your parathroid glands, pituitary gland and pancreas. At the age of 22 I had 2 parathyroid glands removed because I had too much calcium in my sugars and therefore had kidney stones which was extremely painful. After the operation which was done in UK I was diagnosed with another adenoma in my Pituitary gland, this was quite scary because it was in my brain. After an MRI was done they saw it was a very small adenoma and with treatment I have it all undercontrol, although I need to have blood tests done every six months to be sure.
I have been suffering from this disease many years and not once did they check my pancreas. Last year I started have low sugars every now and then and I decided to tell my doctor in my checkups. They did some blood tests and a CT Scan and they also did a 72hr sugar fasting. In just 10 hours my sugars went down to 21 but the doctor said that he didnt think i had insulinoma. Finally when the CT Scan was done it turned out that I had FOUR insulinomas. Therefore I had to have all my pancreas removed and my duodenum. I had my whipple surgery done in Cordoba Spain as I live in Gibraltar. I was 6 hours in surgery spent a month in hospital and thanks God I am much better now. I have lost 20 pounds. My only problem is my sugars as because of my operation I am now a diabetic. They are trying to keep it stable but its taking some time to do so. Everywhere I go I need to take my insuling pen, juices, sweets just in case I have a hypo or my sugars go up. (Its tough but I’,m sure I’ll get there). I have a lot of support from my family and friends which helps me go through this a bit better. I’m glad i found this forum, if only I could speak to someone who had the same op as me it would be fantastic.

Anyway I’m glad wie have this forum and would love to hear some comments from all of you.
Sue

Thursday, 5th November 2009 at 8:30 am

Thank y’all for your stories. I went to my new internal medicine doctor yesterday, and he just said the sugar issues are my endocrinologist’s dept. I was a little disappointed, as my endo just says “don’t worry about the low b/s, it won’t harm or kill you”! I guess I am going to specifically ask my endo for the 72-hour fast to rule an insulinoma in or out. I had a CT scan two days ago, ordered from my gi NP because of bloating in my upper abdomen. So, MAYBE something will show.
Another question I have is, ok, if my doctor says I just have reactive hypo because my fasting sugar is not low, why is this acceptable that I spend years with b/s dropping out from under me with normal meals?? I’ve had this for many years, but before I got my meter, I just gauged the lows by shaking. NOW, I get shaking, anxiety/irritability, heat surge. I guess my point is, I don’t eat alot of junk like colas, cakes, etc. , so in my mind, my pancreas is sooo over-reacting to normal meals. This can’t be normal.
Laura

Thursday, 5th November 2009 at 10:42 am

Sue, here is a thought. If your endo thinks it is ok to have a sugar level under 30 at any point in time, maybe you need a new endo….. You can absolutely die from low blood sugar whether it is going into a coma or killing yourself or someone else driving a car. Truly, what he said is asinine!
Jackie

Thursday, 5th November 2009 at 12:18 pm

Sue

I totally agree with Laura. What a stupid thing to say. I am so thankful I did not harm anyone driving around lost and confused. I must have had angels everywhere.
April

Thursday, 5th November 2009 at 2:16 pm

Sue,

I don’t know where you live but there are several large hospitals in the US that will diagnose low blood sugar problems if you are having trouble with your local doctor.

I had my diagnosis at Mayo Clinic. in Rochester. You can refer yourself though it helps to have your doctor refer you and send all your results. The NIH in Washington, DC often does studies on low blood sugar. YOu can look them up on the web and check out their studies. If you go back to June of this year on the blog, someone went their for a diagnosis. - maybe Audra - If you quailify for one of their studies you get free health care while you’re there.

If your local doctors are not helping this may be an avenue for you.
Sue

Thursday, 5th November 2009 at 2:16 pm

I just talked to my endos nurse, and she said he said that since my fasting insulin was normal, that I didn’t need further testing. I know I’ve talked to one insulinoma people who’s fasting insulin was normal, but the proinsulin was high. Anyone else? He has never tested anything but glucose and insulin.

I agree that he is not taking this seriously. I have read in the Endo. Journal of a few people that had insulinomas removed and they passed their 72 hour fasting test! And, they had normal fasting glucose, just that they had reactive hypoglycemia during their 5 hour GTT. SO, he wanted to refer me to someone at a large medical center, but I’m not sure who or under what diagnosis, if he doesn’t believe I have a sugar issue. I do have a small growth on my adrenal gland, so maybe he’s going to pull that card. I said go ahead and refer me!
Peggy

Thursday, 5th November 2009 at 3:54 pm

You should ask that doctor of yours if he’s sure you’ll be fine with a sugar reading at 40?? I remember someone saying that they were told they were holding their infant while hanging over a railing,.and later fighting with their weed wacker before waking up on the kitchen floor!!
Sue, now’s your chance! If your doctor is going to refer you to someone,, research and choose a doctor yourself. I know that can be tricky with certain insurances, but I believe if you aren’t getting staight answers then they have to send you to a specialist outside of their network. You’ll have to ask your insurance what doctors agree to contract with them, but you should have a choice. It’s a lot of work , but there is a way to do it. I just wish i had figured it out sooner that 15 years later! What area are you in?
(Do I remember you saying that your sugar has been up in the 170’s? My sugar did that only once or twice on it’s own during my 15 year experience with insulinoma. The only other times was with d-50 administered from a paramedic.)
Sue

Thursday, 5th November 2009 at 5:54 pm

Peggy, I live in south Louisiana. I have access to the Houston medical system, or New Orleans medical system. I know MD Anderson is where they are going to refer me to, but I have some emails out right now to a couple of other doctors asking if they can give me a clue on an endo that might actually address my b/s issues. One is from the Houston area, and one is from New Orleans. I apparently have to be tested by an endo before I can see on of the “big” guys from N.O. I”ve talked to one person about a physician at MD Anderson that helped her, but if anyone else knows of an endo in either area that would help, please email me!
My sugar, and insulin, both went that high, but only during a GTT. I know after just an ordinary meal I’ve tested and got to around 120, then start dropping from there.
Marylin

Sunday, 8th November 2009 at 1:29 pm

Hi Sue,

I have been reading some of your post’s and I to have a drop in b/s after meals. I have been to Mayo a couple weeks ago and they are 70 % sure I do not have a insulinoma but they did not do the calcium test and the cat scan didn’t show an insulinoma. The doctor said he thinks the b/s drop is due to the fact I had lap gastric by pass surgery. It seams that the patients that have had that done are having these symptoms. Well I was ok with what he said but as time passes and I have the same problems I get frustrated and I am so uncomfortable. I wonder if there are any other’s on here that have had the gastric by pass surgery and have the same symptoms. I get the dam heat surges and I am about to go crazy with them. I noticed that my sugar drops after I eat and I get busy doing house work or any activity. I have not seen my endo. doctor yet since I have gotten back from Mayo. I hope she will have something to encourage me on this whole thing. I still wonder if I have and insulinoma hideing in there. 70% still leaves a lot of room for error. I feel I have been left in limbo.

I am not putting down the treatment I rec. at mayo. I have a great deal of respect for the doctor I saw and it made sence what he said. He felt my symptom’s were not bad enough to do the other test. I am not blacking out yet. I do get confused and weak and have vision problems at the time the sugar goes down. Just had tp get this off my mind. Hope it is in some way helpful to others.

Thanks to everyone for sharing and their support. Marylin
Kim

Sunday, 8th November 2009 at 1:35 pm

The way to diagnose an insulinoma is by blood test. The tumors are very hard to find. The CT scans and calcium tests are usually for locating the tumor once the blood tests show that an insulinoma exists. An insulinoma always gets worse I believe. So eventually, the blood test should point to an insulinoma if there is one. Anyone, correct me if I’m wrong here.
Nicolai

Sunday, 8th November 2009 at 2:55 pm

I agree completely with Kim. You need blood tests to diagnose an insulinoma. The standard test is the 72-hour fasting test, where the goal is to draw blood when you have very low glucose levels, and then test the levels of insulin, proinsulin and c-peptid.
The scans should only be used to localise the insulinoma, which is often hard to find.
Marylin

Sunday, 8th November 2009 at 3:59 pm

Thanks Kim and Nicolai,

My endo. doctor did do a fasting blood test in June where I ate pancakes and syrup and oj for breakfast after all night fast. and no eating for 2 hours and 2 hours later took blood test. My blood sugar was at 33 and my insulin was 18.4 considered high according to lab slip so that is where the doctor felt I may have an insulinoma. Now I see that others
have taken a fasting test and I wonder how they start that. Do you drink a high sugar
drink or just fast for long periods of time with out the breakfast or high sugar drink?

Thanks for your comments.
Kim

Sunday, 8th November 2009 at 4:37 pm

I never had a 72 hr test. My bloodwork was done in the morning after a night of fasting. My bllod sugar was low, my insulin not very high, but my proinsulin was high. I don’t remember the numbers now. Your levels of 33 and 18 sound pretty definitive to me.
Charlotte

Sunday, 8th November 2009 at 4:39 pm

Dear Marilyn
A fasting test is a very simple test: you do not eat or drink anything but water during the fast, from start to end. You can start the fast at any time of the day depending on where you are when the fast is done. But remember – you can’t start the fast on your own. You need blood drawn both in the beginning and in the end. You also need a doctor or a nurse with an IV-setup for injection of glucose.
I had my fasting test done at the hospital where I was admitted after a “morning-coma”. I stopped eating and drinking at 6 pm, had blood drawn for the same bloodtests as when the fast is done. I was lucky and my insulinoma was quite active that day…….. my blood sugar were down to 36 mg/dL at midnight, just 6 hours later. Piece of cake to fast …… Again blood was drawn to see the values for blood glucose, insulin, pro-insulin and c-peptide. Then I had an injection into my IV-drop with concentrated glucose and I got a nice meal which I enjoyed very much that night.
The fasting test you went through has no relevance for an insulinoma, as far as I know.
Best of luck to you
Charlotte
John

Sunday, 8th November 2009 at 4:46 pm

Sue, I am trying to recall exactly my so- called 72-hour fasting test over a year ago. I had to go into the hospital early in the morning having eaten and drunk nothing since 10 pm the day before. They measured my blood sugar with the pin prick test, then gave me a large mug of not unpleasant, terribly sweet and lemon-flavoured syrupy drink. I had to drink it all quickly, then lie down - and wait for the effects on the blood sugar which taken and measured every 30 minutes. from a high blood sugar blast level until the sugar fell was about three hours, frustrating because it seemed not to register. But then it registered big time. I slumped, babbled insanely, professed love for all nurses, hid under the sheet like a baby, refused to cooperate, slept and generally hit rock bottom. Then they fed me a baked potato and fruit drinks and waited for my sugar to come back. That took an age! Finally, over seven hours, not 72 hours, after I entered, I was dismissed and went home by bus, exhausted but reassured because I had acted and reacted as expected from a suspected insulinomiac. The body which usually was letting me down every two to three hours went into survival mode and postponed the inevitable crash but couldn’t postpone it for ever.
They immediately arranged CT scans, MRI scans and octreotide scans - of which the first two showed positive results and pinpointed the tumour’s location.
The rest went smoothly - and a year on I am so well it’s disgusting!

Good luck - and good hunting - and good health. It is a fascinating, time-consuming, frighteningly long process - but there is a solution - and it is better than he struggle to live with the tumour.

John
Kim

Sunday, 8th November 2009 at 4:48 pm

I think the combination of low blood sugar and high insulin absolutely has relevance for n insulinoma because that would never happen in a normal body no matter what kind of fast you went through. My bloodwork was done only after an overnight fast and showed low blood sugar and high proinsulin. That’s the magic combination.
Jackie

Monday, 9th November 2009 at 6:40 am

My diagnosis was similar to Kim’s. I had an overnight fast and it showed low blood sugar and high insulin levels. 3 months prior I had the same but the second test was more pronounced. My primary care physician sent me to an endo that thought insulinoma immediately and it was found on the first CT scan located in the head of the pancreas. After following all of the posts for almost a year now I am so grateful for the quick diagnosis and resolution. My heart goes out to all of you that are struggling through this initial phase.
Nicolai

Monday, 9th November 2009 at 7:18 am

Very interesting to hear how people got their diagnosis.

My understanding is that the 72-hour fasting test is meant to provoke a low blood sugar level, and then test the insulin levels.

So Kim, you are right that if after just an overnight fast, the blood sugar is very low and insulin levels high, the doctors may be satisfied that you have an insulinoma. However, even if overnight fasting blood values are within normal ranges, this cannot be used to exclude the possibility of an insulinoma. This is why the 72-hour test is used.

From what I have been able to research, most hospitals look primarily at the blood values from the end of the “72-hour” fast. However, I have also read of hospitals that administer glucose orally at the beginning of the fast (like John describes) and then measure blood sugar and insulin levels frequently the following many hours until the blood sugar gets low. The developments in bloth blood sugar and insulin levels then give a very clear picture as to whether there is an insulinoma or not.

I will have my second 72-hour test in a few weeks, which is why I have been trying to learn some more about the procedure.

Good luck to everyone still fighting with a diagnosis.
Laura

Monday, 9th November 2009 at 4:04 pm

my 72 hour test was not typical, I woke up in the morning, did not eat, my husband drove me to my endo’s office, he did a blood draw and I checked my blood on my monitor. After an hour, he did another and I checked again, about 30 minutes later we did it again and at that point, I was really low and had to eat so we ended the test. It seems to me eating before would only make the test take longer. They are measuring that your sugar continues to fall even though you are doing nothing and your insulin and pro-insulin levels to make sure you are not secretely injecting yourself with insulin.
Sue

Monday, 9th November 2009 at 4:55 pm

Well, my endo referred me to Houston. MD Anderson said they only handle cancer patients(which I kind of figured), so they referred my doctor’s office to another endo in Houston. I go tomorrow! Hopefully they’ll look into this a little more. I’ll keep y’all posted.

Did anyone FIRST get a reactive hypoglycemia diagnosis and then have the insulinoma found?
Marylin

Monday, 9th November 2009 at 5:58 pm

Gee all this input is great! Thanks for giving out all this info. It is so interesting to see everyone’s take on this b/s problem.
Peggy

Monday, 9th November 2009 at 6:12 pm

Yes! But then it took 15 years to find the insulinoma.
Good luck in Houston.
Sue

Monday, 9th November 2009 at 6:26 pm

Marilyn-I enjoy all the input and stories also. You know, you can only get so much information from medical articles or other info, but nothing like hearing it from the horse’s mouth!!!(Not that ya’ll look like horses!)

Peggy-that is nice to know. I figure there are more people that are just “cast off” to the side and given a reactive hypo diagnosis.
Kim

Monday, 9th November 2009 at 6:31 pm

Wow don’t ya just LOVE the photos at the top of this!

Yes, sometimes I wonder if doctors try to avoid this diagnosis … hmmm … that thought has crosses my mind once or twice.
Sue

Wednesday, 11th November 2009 at 8:29 pm

I thought I posted this last night, but maybe not. So here goes:

Okay, my new endo, may I say, uttered the words, “72-hour fast”!!!! I was in my brain thinking “yaaay!”. However, she needs to look at all my previous labs and think over my not-clear cut history-I probably also have other endocrine issues going on at the same time. Then she will come up with a game plan. But, I was very impressed that she intends on studying my case. I will keep y’all posted when I hear back from her.

Please, for those that haven’t posted, we would like to hear more stories of testing and diagnosis(include any testing numbers, as I know I personally like to compare).

Thank you all so much who have been diagnosed and are now well. You don’t know how much your information helps us that MAY/MAY NOT have an insulinoma.
Kim

Wednesday, 11th November 2009 at 8:32 pm

Great news Sue. Patience yet persistence!
Sue

Wednesday, 11th November 2009 at 8:35 pm

By the way, I do like the extreme top-of-the-page pictures, as obviously they look like snapshots of a different country than the US, however, I DON’T care for the pictures that are on the upper left, that don’t leave anything to the imagination. I know that those were the ones being referred to when people said they LOVED the pictures, and know that was said dripping with sarcasm! I totally agree.
Sue

Tuesday, 17th November 2009 at 11:02 am

I haven’t heard back yet from my new endo almost a week later. I guess she is still getting in old labs and wanted to talk it over with others first.

Nothing’s been posted in almost a week, so wondering if this site is “down”.
Jackie

Tuesday, 17th November 2009 at 6:55 pm

Nope, it is still up. And it is so hard waiting for answers. Sue, you hang in there.
April

Wednesday, 18th November 2009 at 11:22 am

Hi,

For what it is worth, as a former insulinomian, I have a few suggestions for people in the process of diagnosing and treating their insulinomas pertaing to the concern about immediate answers on the blog.

Insulinoma is a long process that involves a lot of waiting. Waiting for appointment, tests, test results, doctors decisions, etc. If you focus on it too much it will take over your whole life, which is not necessary. My suggestion is to make sure you have taken the next step, called the doctor, made an appointment, scheduled a test etc and then keep up with the rest of your life. Make sure you have glucose tablets and food with you at all times. Eat a healthy snack at regular intervals. Keep your meter with you and then live your life. Take care of your kids, go out with friends, read a good book, get a new hobby. Check this blog every few days but not every day. Certainly not every hour or every 20 minutes.

This is a tough disease but it is not something that keeps you from doing the things you need to do. You just have to plan ahead and be careful.

Just my two cents on the issue.
Angie

Wednesday, 18th November 2009 at 12:19 pm

April

I can only agree with you completely. You should be able to judge what you can and cant do - you should know if you are getting low and take steps - ie snacks and blood testing. I always carried a healthy cereal bar with me or headed to the shops to get something to temporarily raise my sugars. I lived on low blood sugar without knowing it was a serious condition for years and years. I only really know how serious my problems were till after my op when they werent there any more! If you read any of my previous posts they will describe how seriously ill I was and all my side effects. Not quite as bad as some people on here but certainly challenging.

There are so many posts now it is hard to even begin at the beginning and take it all in but if it hadnt been for this site I would still be searching and still reading about ferrets!

It is 2 and half years since my op and although my blood sugars reverted to normal straight away recovery for the rest of my body was not quick and patience was still needed.

I am healthier than I ever was but still dont take it for granted and still keep an eye on how i feel. However even when feeling low my blood sugars have been quite normal which is always very comforting.

Just a quick note - there are many things that cause low blood sugars and it is possible that it is not an insulinoma - you need to make sure that the doctor you are under has the experience and patience neccessary to fully investigate and rule it out and if you are still convinced - shout very loud and keep doing it until someone listens.

Wishing all the very best where ever they are in the insulinoma process.
Sue

Wednesday, 18th November 2009 at 12:54 pm

:(
Peggy

Wednesday, 18th November 2009 at 3:59 pm

Sue,

Can I leave you my phone number? I would love to talk with you. I want you to know that I (as well as others) COMPLETELY understand what you are going through.. Here’s my email pnadeau82@hotmail.com.
Kim

Wednesday, 18th November 2009 at 4:12 pm

Sue,

I echo what Peggy said. I understand. We have all gone through the various stages of dealing with this nasty illness on this site. It is a good place to tell, ask, complain, rejoice - all of that lets the newcomers know what can be involved & that they are not alone. I absorbed everything on here like a sponge when I was ill and it sure did help knowing that the bizarre and unsettling things I was going through and they way I perceived it was not unusual.
April

Friday, 20th November 2009 at 4:05 pm

Has anyone that has had surgery gone snowskiing in the first few months after surgery. If it ever gets cold, we want to go but I just thought about how bad that might hurt after skiing all day. Would love to hear some experiences.
Kim

Friday, 20th November 2009 at 4:27 pm

Hi April,

I can’t remember when your surgery was but mine was at the end of September and I went skiing in late December. The stomach muscles aren’t as fully healed as they will be until at least half a year after the op but I found skiing to be no problem.
Heidi

Wednesday, 25th November 2009 at 12:08 am

HI everyone,

It has been quite as while since I checked in here, but I see those of you who are still in the diagnosis process, are struggling with the slowness of it all. I can sympathize - we went through it all too. It seems like you will never get the answers you are desperate for, but I can tell you we made it in just under a year from the first distinct episode to surgery.

8 months later and Mike is back to work full time, has a fascinating scar to show off and things could be said to be normal. However, things are different too. Mike has recovered but he has not returned to the same as before the start of this all. I was chatting with my son’s pediatrician today, regarding Mike’s situation and he mentioned that prolonged low blood sugar episodes can change/ damage brain cells which can change personality.

If you ask either Colin or me, Mike is still different than before; more tired, more passive, more turned into himself. Before surgery he was this way, and it was part of his self-preservation - keep the output low and he could coast longer without setting off the hypoglycemia.

Now he has stable blood sugar and no real reason to behave this way - so is it a new learned behaviour, or has his body changed and his personality with it? or could it be a form of depression which apparently can happen to people with serious and/or prolonged illness?

So my question is for those of you who are past the surgery a stretch - have you changed from how you were before you got sick?

We have made such progress from where we were in April 2008 when he had that first episode, but we are not back to the way things were before 2005. I can actually trace the progress of Mike’s declining health to sometime around 2005 when he started to get slower and quieter.

Am I imagining things? My son doesn’t think so - he still mourns the loss of his “Daddy” who was a scout leader for him and his best friend. That is not the Dad Colin has today.

Maybe I am just exaggerating things but he seems more fragile somehow.

Any thoughts?

Thanks,

Heidi
Kim

Wednesday, 25th November 2009 at 7:35 am

Hi Heidi,

I am really glad you wrote. When someone is ill, people always seem to ask is it cancer? And if not, then all is well and no matter what you’ve gone through, it seems, you are expected to bounce back and be happy that you are alive and well. This can wear on you if you think you should be bouncing back and you’re not. I think perhaps we all have our weak link and for me it was the psychological aspect. I physically recovered very quickly - went hiking three weeks after surgery, horseback riding 6 weeks, skiing for a week (the steep stuff - not to toot my horn but just to illustrate my point). HOWEVER - the emotional recovery has been much slower. Along with the traumatic things that happened because of the insulinoma, several traumatic things happened in my family life so it gets hard to say what caused what. But I am definitely not the same person. It is like a kind of mini-PTSD - my physician used that term. I am two years out of surgery and I am getting better and better. I don’t want to go into a lot of details on this site, but if you want to talk more we could exchange email addresses. But to summarize, it will take time. I think it is good to recognize what doesn’t seem right, to accept it, and to let go of expectations but be sure to celebrate steps in the “right” direction. This is not something that can be forced, it needs to happen of its own will so you probably need to stop thinking in terms of then and now, and focus on the now and the future.
Sue

Tuesday, 1st December 2009 at 8:54 am

I head back to my g.i. doctor today(finally, after a month of waiting!) to find out some results. The one I am curious about is a CT scan of my abdomen. I will be curious to see if it shows anything on my pancreas. Last time I had a CT scan of my abdomen(2 years ago) they mentioned an enlargement of the tail of my pancreas, whatever that means.
Kim

Tuesday, 1st December 2009 at 9:12 am

Sue - Good luck today. I hope you find somethting definitive. I remember when I went over the reults of my first CT scan with my GP and she said “They didn’t find anything so that’s good” and I had to say “No we WANT to find something!”. She clearly didn’t understand what we were dealing with!
Justine

Thursday, 10th December 2009 at 11:03 am

Hello! It is so nice to have found this website with many people who have been diagnosed or many people who are struggling with hypogylcemia. I am a 21 year old female and I have been having hypo episodes since I was in my early teens. I have blacked out a couple of times, but I never knew it was something to do with my sugar levels until recently. I have been to an endo doctor who tested my fasting levels which have came out normal. The problem with my condition is that it is not an everyday thing, so it has been hard to diagnose. When my first endo. doctor found normal numbers from my test, she was about to just release me back to my primary care until I persisted that she refer me to the chief of endo for a second opinion. I saw the chief about 1 week ago and he ran an oral glucose tolerance test on me. My fasting was 77, 2 hours after drinking the glucagen it was 74, then my number dropped to 48 at the third hour. When it was at 48, I definitly had hypo symptoms, but I was not at the worst I had ever been. This makes me wonder what my BS is at when I actually black out?! Anyways, the doctor is saying it is reactive hypogylcemia and wants to end the tests at that. The problem is that I feel that I have both fasting and reactive hypogylcemia, because everytime I have blacked out, it has been in the morning after fasting. I have been trying to keep a log of my sugars, but my hypogycemia is so unpredictable that I have not caught a number below 68 yet. Not to mention that I have not had a faiting spell since I started keeping track of my BS’s.

I am just really confused about what to do from here because I know something is going on, but I feel as though it is being pushed in the corner. Has anyone ever experienced having random hypo moments one morning and not the next? I also have a pretty balanced diet and I am not overweight. I have been so fatigued and tired these past few years, and it is really starting to take a tole on my daily life. I also have frequent headaches & migrainces. My doctor also did a CT 2 years ago which showed nothing, but after reading everyones story on this website and seeing how these insulinomas are so easily missed, it makes me wonder if there is something being missed.

Please help if anyone has any comments or questions.

Thank you,
Justine.
Jackie

Sunday, 13th December 2009 at 8:56 pm

Justine, welome to the site. My symptoms were very random. I did have low fasting sugars once I reported a bad episode and my PCP started testing and looking for the causes. But for 6 months I would go weeks with no problems but the episodes got more frequent. I gained about 50 pounds, was really tired, and pretty scared. Where are you located. Maybe someone from your area on this site can give you some adivce on who to see. This is so rare that not may physicians handle this stuff.
Justine

Monday, 14th December 2009 at 9:01 am

I am located in Southern California… I have insurance through Kaiser, but I am starting to loose patience and trust in them. Most of the doctors treat you as if you are a number, and not a patient. I do, fortunetly have a very good primary care doctor now, but I have yet to find a good Endocrinologist. I am just so confused about what to do and how to go about getting my questions answered.
tatia batz

Monday, 14th December 2009 at 10:30 am

Justine,
You have come to the right place for help! You have stick with it and not give up until someone can figure out what is wrong. You may ask your endo or primary care physician to give you a blood glucose monitor so you can take your blood sugar every two hrs or so, before you get up in the morning and throughout the day. There are certain blood tests that can be done to see if the proinsulin levels are high when the insulin level is low. The 72 hour fast might also be a test to do in the hospital or docotor’s office. At some point if you have an insulinoma the symptoms will become worse and more frequent. Stick with it and try to find a doctor where you are that can see you who knows specifically about insulinomas. Check the previous entries on this site to the beginning because I know of several people who have had this condition who are in your area that have been on this blog. Good luck and keep us updated.
Tatia
Justine

Tuesday, 15th December 2009 at 1:47 pm

Tatia,
Thank you very much for the information and the help! I have an appointment with my Endocrinologist tomorrow, so hopefully he will run some more tests. If I have reactive hypoglycemia, does that rule out insulinoma? Or have many of you been diagnosed with reactive hypo first?
Sue

Thursday, 17th December 2009 at 8:59 am

Justine,

Welcome and good luck with your journey to diagnosis. I am in the same boat, waiting for my new endo to look more in depth into my low blood sugar issues. I have been told in the past that I have reactive hypo, but something has changed this year. I am dropping ALOT lower than I used to for the last 15 years, and it is hitting me faster. Let us know how your appt. went.
Helen

Sunday, 20th December 2009 at 3:09 pm

Hi all, well I have not written on here for ages, but have read through some of your stories over the last few years.

I had my insulinoma removed April 2006 and all has been well but in the last month I have had 3 hypos!!!! 2 unconfirmed as I did not check my sugar but on Saturday I had that feeling of spaced out and checked it and it was 2.9 so now of course I am worried that it is back. I will be phoning my consultant tomorrow morning, but suppose I want to know if anyone has had their insulinoma removed and then it’s returned? Suppose my main quesiton is can a healthy person have a hypo?

Thanks and wishing you all a very merry Christmas.

Helen
Janet

Sunday, 20th December 2009 at 3:36 pm

Hello all!

Helen
I am sorry to hear about your 3 hypos. I have a recurrence of insulinoma. My first was completely removed, but many years later I have another one. Now, this may not be the case with you as we are all different. But do get it all checked out. It seems so unfair, it really hits you when those hypos return and there is no mistaking them. Any way lets hope there is another explanation for your symptons. God bless you all.

Janet
Helen

Monday, 21st December 2009 at 1:20 pm

Hi Janet, sorry to hear that you have another tumor. Are you going to have it removed again? How long ago was your first one?

I called my consultant and am waiting for him to return my call, I think I will ask if I can do the 3 day fast after Christmas etc just help put my mind at ease or not!!!!!!

It sure does feel like OMG I cannot go through this ago but I am hoping that it is something else but have a feeling it’s not because as you say there is no mistaking the hypo, it;s all happening in the same way for me plus I am starving after eating which is what I used to feel.

Anyway I’m going to try and stay positive and see what Dr Drake says.

Take care.
Helen
Janet

Monday, 21st December 2009 at 3:31 pm

Helen
No, I am having medication to try to help symptons. It was going to be very difficult having already had extensive surgery on my pancreas (also had spleen removed) so I live on diaxoxide!! It does help to control the hypos, and although had to put up with the side effects its much better than daily hypos. I am ok and count my blessings. I hope you get some news and diagnosis yourself soon. Love to all.
Janet
Peggy

Tuesday, 22nd December 2009 at 12:02 am

Oh no! Helen that is not good news…I remember you had a reaction to diazoxide didn’t you. But it doesn’t bother you now? Wow, until I heard about Janet, I never considered what it would be like to have to accept going through this disease again. There is so much they just don’t know. I will pray for both of you to be able to withstand whatever it brings.
Janet

Tuesday, 22nd December 2009 at 7:13 am

Peggy.
Thanks for your prayers! I too pray for us all on here, but God has given me strength to get through all of this rubbish and I am indeed very blessed in many other ways. I am fortunate that the diazoxide helps me quite well, it has its down side, but it really gets me through. I so hope that Helen gets sorted and can get some speedy answers to her setback and then whatever treatment is best for her. Love to everyone. Just keep going and live every moment you can thats my philosophy on it.

Janet
Sue

Saturday, 2nd January 2010 at 7:00 pm

I am still waiting for my new endo to come up with a game plan regarding my drop in b/s. I have been doing okay lately, but I have the same issue as before-this morning I took a calcium supplement, and my b/s dropped down into the 50s within two hours.

I have made a positive correlation between calcium ingestion and dropping b/s. I really wish I could test my insulin levels(at home) at this time because I just KNOW my insulin is being raised by the calcium, thus causing the drop in b/s. I have had this happen about 5 times now over the last few months. I don’t take calcium hardly at all, as it bothers my stomach area. So, the few times I do take it, I get the drop in b/s. This ought to be a big clue for my doctor.

When you insulinoma people took diazide(?), what exactly is that doing? Does it have something to do with calcium in your body? It might clue me in on some of this!
Janet

Sunday, 3rd January 2010 at 9:26 am

Hi Sue!
I so hope your endo gets you sorted soon. The question bout diazoxide you asked. Diazoxide supresses the amount of insulin made by your pancreas. I have to take quite high doses of the drug but it does work for me, although its side effects can be a problem. It makes your blood sugar higher as it makes your insulin production far less. Hope this helps.

Janet
Sue

Tuesday, 5th January 2010 at 10:18 am

Yay!!!! I’m going to do a 72-hour fast! I believe it will be next week, so I’ll post late next week to let y’all know how it went.

I have a question-do you get to drink water and maybe diet, caffeine free soda just to break the monotony?
April

Tuesday, 5th January 2010 at 3:26 pm

I drank a lot of water and I think they let you drink non-calorie drinks as well.

I suggest you take an IPOD or MP3 player.
Jane

Tuesday, 5th January 2010 at 3:43 pm

Hello Heidi,
I am Jane from the UK who travelled through your town in the 70s. I was in Canada in the summer and thought of you and then in November you left a message about your cncern for Mike. Mike’s experience was traumatic and prolonged, not just his surgery which must shock the body, but also the complications which went on for a very long time. He had to keep mentally strong and positive during all that because, of course, none of us knows the outcome of anything. Then you mentioned your son was diagnosed with Asperger’s . This itself is also a traumatic experience because you have to accept that your child has a problem ( I think I have mentioned before that one of my sons is autistic.) All this takes a long period of adjustment but people are resilient and hopefully Mike is gradually working through all of this at the same time as working and picking up his life again. Try to keep smiling, Jane
Sue

Wednesday, 6th January 2010 at 1:52 pm

April,

Thank you for your information. It will be nice to know that I can at least drink on something.

And, yeah, I can see where an mp3 player would come in handy during that time. I just worry about my husband who will be staying with me, as he is a “busy” type, and will definitely get bored easily!
John

Friday, 8th January 2010 at 5:59 am

Dear all - Jon Mikel, fellow insulinomiacs, husbands and wives, doctors and friends

The first anniversary of my insulinoma operation prompts me to revisit this wonderful site and re-read all the amazing submissions and comments, heart-warming, sad, funny, distressing, supportive and compelling. What is supremely evident is how important the site is to us all, before, during and after diagnosis and surgery. A shared experience is so much better than private suffering.
Jon Mikel - I do hope that you are going to find the time and energy to collate all of our thinking and writing, all our various troubles and successes and follow-ups.
It is clear that more women than men are afflicted - or bother to write about it, anyway!
It is painfully obvious that the condition is so rare and so patchily understood, that sufferers are occasionally misunderstood, misinformed and misdiagnosed and not with any maliciousness on the doctor’s part.
Full public research and public information would be so advantageous - but is very expensive, I suppose.

Whatever happens in the future, I can say again that I feel privileged to have been helped so generously by this site - and so relieved that my own treatment was a complete success. No-one should feel left out, no-one should feel embarrassed at trying to get to the bottom of any unpleasant and unwanted symptoms, making a big fuss if necessary. Here you can ask anything you like. Someone’s probably been through what you are experiencing.

As I have written before, the cure may be a serious undertaking, dramatic, scary, temporarily enfeebling and painful - but the outcome is infinitely worth it.

I have two unanswered questions still praying on my mind: Has anyone else out there experienced insulinoma alongside coeliac disease? And was my endocrinologist’s prediction that ‘one auto-immune condition (such as coeliac and insulinoma) will often lead to another…’ true?
As a nearly 61-year old man in London, I shall watch the site for any answers and future developments - and I send all who going through this my warmest good wishes for 2010 and successful treatment - and full health!

John
Sue

Friday, 8th January 2010 at 3:21 pm

John,

Glad to hear from your story and glad you are all well!

As far as autoimmune, I have Hashimoto’s thyroid, was just tested for celiac last month(had + antibodies, then - biopsy, so don’t know what that means!), and am getting ready to get tested for an insulinoma. So, there might be something to what you endo mentioned.

Maybe some others will chime in and mention if they had autoimmune issues.
Kim

Friday, 8th January 2010 at 4:11 pm

John,

Congratulations on your 1-year anniversary! And thank you for your thoughtful note.

I wasn’t clear on your question - are you wondering whether the coeliac led to the insulinoma or whether the combination of the two will lead to something else? Picking hairs I know but just wanted to be clear.

Happy New Year everyone!

Kim
John

Saturday, 9th January 2010 at 3:59 am

Thanks, Kim and Sue.

I think my question is not whether the coeliac disease led on to the insulinoma - highly unlikely I should think - but more whether anyone has also experienced insulinoma after being diagnosed with coeliac disease, and whether there will probably be another auto-immune condition coming up on the horizon.
And it would be fascinating to read whether anyone with coeliac disease who had the full triple organ surgery to remove their insulinoma, including the removal of their duodenum (the bit that suffers in coeliac disease) led to a miracle coeliac cure…???
My endo could not give a response on that!

John
Sue

Monday, 11th January 2010 at 3:35 pm

I’m going in in the morning to start my 72-hour fast. I’ll let y’all know how it goes! I so hope it tells something, as I am tired of having to eat so often while awake. I read of the people that had their insulinomas removed and now can skip a meal. After all these many years, that is my goal!
Kim

Monday, 11th January 2010 at 3:58 pm

Sue,

Best of luck. I hope they can figure things out for you so you can go on to the next step. Keep us posted!
sue

Thursday, 14th January 2010 at 4:29 pm

Hey everyone,

I am at around 60 hours and my blood sugar is hovering in the low 70s. The first day it was around 100 all day! I never have a fasting that high. So, 12 more hours to the end. I’ll post again sometime.

Not eating is beginning to get old!
Susie

Thursday, 14th January 2010 at 4:36 pm

To Sue,
When I did my 72 hour fast my blood sugar dropped below 40 after 15 hours. I didn’t eat anything after 12:00 midnight and by 3:00 pm I was started to have my symptoms and my blood sugar was in the 30’s. Just thought I would let you know my experience with the 72 hour fast. Good luck with everything!
Nicky

Friday, 22nd January 2010 at 9:04 pm

Hello all!
It’s been ages since I’ve caught up with you all and I have no excuses other than getting on with my new life insulinoma free.
It has been 18 months or so since my partial whipple surgery and generally I feel great. The funny thing was in the beginning, after the operation, you catch yourself analising every funny feeling you have thinking it maybe that they didn’t get it all. I would still take my blood sugar levels when I felt dizzy to find they were all good. Turned out I was anaemic for some months after the surgery, giving me the weakness feeling.
My scar has lightened up even though its still quite impressive, I like to think of it as a battle scar from a war I won, I dont mind it really. I’ve also lost around 17kg so look more like the old me which is an esteem booster in itself.
The only thing that I found annoying was my ditsy moments after surgery. I’m sure the fasting tests I had in hospital without the administering of glucose afterward, including the endo ultrasound left my poor little brain a little worse for wear.I’m sure the jury is out on my opinion but I’ve had a lot of confusion and lost thought in the middle of a sentence which weren’t related to hypos.My husband even read an article on prolonged lake of glucose to the brain causing some damage, but hey we cant have it all right :)
Anyway, here’s good luck to all new comers and a fond hello to all those who helped me during my bad times. I will try and keep in touch more often, happy new year
Nicky x
Sue

Wednesday, 3rd February 2010 at 9:28 am

Hey, I’m sorry it took so long to update everyone!

I have been WEAK and not feeling good since my 72-hour fast. I am just now, two weeks later, starting to feel somewhat normal.

I apparently don’t have an insulinoma, as my b/s went from 100 the first day to a low of 67 toward the end. I was shocked, to say the least. We decided that I must need protein with EVERY meal to make sure the carbs do not overwhelm and make my pancreas put out too much insulin. I have done that since the testing and so far, so good. Even though I will not let more than 3-3 1/2 hours go by without eating.

While I was testing, my b/p was kind of high resting and when I would get up to go to the bathroom, my heart rate would shoot up to the 130s within a minute or two. I don’t know why all that was happening. And, I was sooo hot the whole time, even though I didn’t have a fever. My body definitely did not like going through that, even though the not eating was not a huge deal.

The doctor everyday kept telling me to just relax, like I was on a vacation. I don’t know if my labwork was showing my “stress” hormones were high or something, but my body was sure acting like they were! My mind was very relaxed though, so don’t understand what was going on. The only thing is IF my stress hormones were elevated, that is the cortisol or catecholamines, I DO know they can all cause ELEVATED blood sugar! So, were my numbers artificially elevated???? I have to go back and see the doctor, as she said it would take a few weeks to get all of my blood tests back. I am just hoping they might have tested all of the other hormones also, as I have an orthostatic intolerance issue, POTS(postural orthostatic tachycardia syndrome) also, and maybe the other hormones could have given them a clue. I also have been tested for Cushing’s and a pheochromocytoma in the past.

Thanks to everyone for their answering all my questions. It doesn’t look like an insulinoma for me, but IF my blood sugar levels get artificially elevated because of other hormones, it might still be any issue.
Maureen

Wednesday, 10th February 2010 at 9:52 am

What a wonderful website. It is nice to know that I am not alone! I have been having episodes of low sugar for literally years, but the condition finally accelerated. Now, there is no question of the diagnosis, since I had a CT scan. The 2 cm tumor will be removed March 9.
A strange thing happened along the way that I want to mention. Last February, I was taken to the hospital in the middle of the night with low sugar (26). My primary doctor deduced that I had taken my husband’s diabetes meds! He could not accept that such a thing would randomly happen. I was new to the area and he did not know me well. I asked for an endocrinologist appt. That doctor saw that I had a diagnosis of mild depression and agreed with his colleague that I was just going for attention. His nurses and his dietitians were telling him to check for insulin resistance and for insulinoma, but he was stubbornly insistent that I was a taking my husband’s meds. Finally, the endo sent me for a three day fast in the hospital. According to my surgeon the real reason for the hospital visit was to test for my husband’s drugs in my system! The only thing that showed up was a severe hypo situation. Days later I had the CT proof and a sort of apology from the Endo. He had been blinded by the depression diagnosis and could not get beyond it. It made me aware of how difficult it must be for people with mental illnesses to get help.
Anyway, I am glad to see that symptoms will abate after surgery. I am literally counting the days, since every day is difficult with the ups and downs of low sugars. I also carry food around like it is a pair of glasses. If I don’t have food every few hours there is trouble. The doctor insists that I test sugars before driving and every 1/2 hour of a drive. It is a real pain.
Thanks for the chance to vent. Good luck to all.
Kim

Wednesday, 17th February 2010 at 3:05 pm

Maureen - So happy that you found the tumor so easily though I understand you’ve been suffering for years without knowing what was going on.

The funny thing about what you wrote is that I doubt depression is unusual for people with insulinomas.

Anyways - good luck with your surgery. You will soon be feeling A LOT better!
Peggy

Wednesday, 17th February 2010 at 5:00 pm

Maureen,
March 9th is so close! I will always remember the first day at home after my surgery when I woke up, all by myself!It was such a good day. I am very excited for you!
I went through the same diagnosis as you did since my husbands relative had diabetes and I also was clinically depressed. One endo told me that that was most likely due to too many brain cells being destroyed. I realize there are many different stages of this disease…but they’re all hard.
I’m glad it will all be behind you soon.
Peggy
Jackie

Friday, 19th February 2010 at 10:48 am

Maureen, so glad you found the site. How sad you were treated in that manner. Depression must be fairly common with this because you have fatigue, weight gain, loss of independence, and many more issues. I have had some depression since surgery but now that the weight is coming off I am better. You will get your life back, you will not have to carry food around, you will be able to delay a meal and not worry. It is not long now. Please let us know how you do and if you have any questions.
Maureen

Thursday, 4th March 2010 at 7:38 pm

Thank you everyone. Just a few days until the surgery. I’m excited and worried at the same time. Though, I expect to soon feel so much better, I am not looking forward to the time in the hospital. It occurs to me that there will be an adjustment afterwards, too. I will have to get used to being healthy. Strange as it sounds, I have become used to the everyday challenges of low blood sugar. What will it be like not to have to carry a blood monitor and a bag of food? What will it be like to not have to have an alternative agenda for every day depending on how I am feeling? How wonderful each day will be when I just have to deal with normal things! From this website I’ve learned so much.
Pamela moeyedi

Thursday, 4th March 2010 at 11:33 pm

Maureen, You are in my thoughts and prayers and i am wishing you a successful surgery, and a speedy recovery! I have not posted in quite a long time…. and hearing your story brought up many memories and similarities to what i went through with the doctors and how i felt. I suffered for about 6 year, having two young daughters, my low sugars were so bad i suffered black outs and even a seizer at the grocery store with my daughter (then she was two)…….. the paramedics read my sugar to be 22. When i went to my endo. she said “Thats just not possible, and well you didnt eat right all that day!” Very frustrating.
It is scary wondering how life is going to be when you don’t have to rely on a purse full of food, and everyone around you watching every move to see if you need something to eat! When you can have a glass of water, a nice fresh salad and know that you feel fine! To me …..a-lot of my depression was corrected after my surgery… i wasnt living anymore with low energy and low sugar, and all the battles that came with it!!! It is such a hard disease to live with….. and takes such a toll on your body, it’s no wonder a-lot of us feel depressed!
I know you are going to go through this and come out healthy and relieved and happy that you can go on like nothing ever made you sick in the first place!!!

best of luck, best of wishes, i will be praying for you!!
oxoxoxox

Pamela
Nicolai

Friday, 5th March 2010 at 12:34 am

Maureen,

The very best of luck to you. So happy for you that you finally got the diagnosis and can now get the operation. I hope everything goes well and that you can soon live a normal life.

I have still not had surgery, so I can certainly relate to you feeling worried! What type of surgery will you have? It seems that recovery can be tough, but everyone in here seems to feel that it is well worth it to get their lives back.

Although the doctors are sure of my diagnosis, they are still not sure about the location of the tumor. So they will now do an intra-arterial calcium stimulation test - I believe some of you have had this? Hopefully it won’t take too long before I am ready for surgery as well.

Good luck Maureen!

Nicolai
Peggy

Friday, 5th March 2010 at 8:21 pm

Hi All!

Maureen, Tuesday is on my calander and I will be thinking of you and praying for you. I am so excited for another life to begin as you are healed!

To all past and present insulinomies,

Would you be interested in being interviewed briefly by a friend of my daughters who is doing her senior project on people who suffer with “invisible” or rare diseases? She mainly wants to know how it has affected our lives and show how we can provide support groups etc. I’m sure you can use an alias if you’d like.
She will need to interview this week I think..

Let me know. :)
Peggy
Russel

Saturday, 6th March 2010 at 4:49 pm

Hello All,
Did any of you have pain or discomfort in the area of the pancreas *before* diagnosis?
Thanks
Russel
Nicky

Saturday, 6th March 2010 at 9:45 pm

Peggy,
I could do an interview for your daughters friend if you like, the more this info gets out there the better for all those others like us. How would this be done? Would she require an email address?

Let me know
Nicky
Amanda

Monday, 8th March 2010 at 10:10 am

Hi Everyone :)
My name is Amanda. I am 30 yrs old, I am 360lbs., and I am awaiting surgery to remove my insulinoma.
I have been feeling the hypos for years (10+) and so many doctors have told me I need to “just face it and lose weight already, there isn’t anything wrong with me”. She (just like alot of my doctors) ignored the fact that I had obscenely high insulin levels, and very low blood sugar levels. She just worried about me becoming a diabetic. Finally I was referred to an endocrinologist, not without a fight. I kept insisting that there was something wrong to my primary care physician and she retorted with “Fine, I will send you to the Endocrinologist, but that’s it, after that you just need come to terms with the fact that you need to change the way that you are eating, and lose weight!” I was so desperate for that referral at the time, I didn’t even care. Here, I am now after many tests awaiting surgery to remove the insulinoma. I just had an upper EUS done on Friday, which they found an intramural (subepithelial) lesion in the area of the minor papilla and the ultrasound was unable to get a definitive localization of the insulinoma, so tomorrow, I have a visit with the surgeon to see what the next step is. The endocrinologist is says that I absolutely have this tumor/tumors, the surgeon just needs to find them. I also had a terrible reaction to the anesthesia (vomiting, low b/p).
After reading all of these amazing stories (thank you everyone) I was finally able to answer alot of questions floating around my head. I really didn’t know that recovery was so long! I am so happy that 1. my friend referred me to this site 2. that so many people were brave enough to voice their opinions on the matter.
I am ultimately hoping that the surgeon won’t have to remove much of my pancreas. I still wonder, how has this tumor affected my life otherwise? My 9yr old son was born with congenital cataracts, and had to have surgery to remove them and an implanted lens in his right eye. He is legally blind due to this. I gained 100lbs. for that pregnancy and kept the weight. In my 4yr old daughters pregnancy, I had blackouts and an emergency c-section. She had low-blood sugar when she was born. My son was born 9lbs 6oz., my daughter 8lbs.14oz. It just makes me wonder, what else has this tumor affected in my life.
I’ve always known something was wrong. I eat healthy, I walk everyday, and I have no other health problems. It is such a tough diagnosis, but I am, at least, glad to know that there is someone out there that understands what I am going through.
Thank you all for listening,
Amanda
laura

Monday, 8th March 2010 at 10:12 am

Peggy, I can do an interview as well, she can email me at laura@norwoodpaper.com
Debbie

Monday, 8th March 2010 at 10:46 am

Peggy, Add me to the list for interviewing. DHDD517@gmail.com

Maureen, Thoughts and prayers are with you tomorrow.
john rossi

Wednesday, 10th March 2010 at 5:37 am

hi all, i wanted to share my insulinoma story with you. when i first found out about it, this was the first site i found, and i read every post and i have to admit i was left traumatized, especially with heidi’s post. in feb. 2009, i passed out at work, woke up in an ambulance being told my blood sugar level was in the single digits. my work mates were telling me how i was walking sideways, but i was still telling everyone i was alright. i was dieting at the time, so doctors seemed to think that was responsible. they gave me a meter to test my blood and told me when it was below 70 to snack. the problem was it was hard to keep it above 50, with occasional readings in the 20’s. with the aid of a vending machine at work i noticed a snickers bar and a coke would raise it to 70 for a few hours, and a coffee and donut made it safe for the ride home. when i would get home from work i’d make big meals, and noticed a kind of numbness in my mouth while i’d be eating. this went on for a year, till my wife persuaded me to see a doctor. in the year since i had last been there i had gained about 70 lbs. my blood pressure was sky high, my heart rate was double what it should have been and a blood test showed i had elevated insulin levels. they asked me if there was any history of pancreas problems in my family. my mother died of pancreas cancer at about my age, so i was thinking the worse. a cat scan of my pancreas showed a 2cm insulinoma on the head/neck of the pancreas, an endocronologist told me it would most likely be a whipple procedure. i can’t begin to tell you how much i stressed out the week leading to surgery. when i woke up after surgery, the only discomfort were the tubes in my mouth and nose. somehow, the surgeon at university of illinois were able to scoop just the tumor out, without disturbing the rest of the pancreas! even though it was in a bad spot and right next to an artery. i was out of the hospital in 4 days. i had a drainage tube that was removed the following week. they said before surgery that i most likely be diabetic, but since the surgery, my blood sugar is around 110, which they say is perfect! plus my heart rate and blood pressure are also perfect, so no more blood pressure medicine. i’ve lost 50 lbs. since surgery, and i’ve given up the candy and soda. i thought the scar would be staples or stitches, but they used a glue and tape, and when the tape came off after a couple weeks, i was surprised how nice it healed. looking back, besides all the poking with needles and removal of the tape that was holding the epidural on my hairy back, this was really a pain free operation. its been exactly a month since it was done and i feel well enough to return to work. i’m also surprised i no longer need any perscriptions. its been a crazy year, but what a happy ending. best of luck to all!
laura

Wednesday, 10th March 2010 at 1:32 pm

Amanda, what is your primary care doctor saying now? they tend to be very embarassed that they blew you off for so long which does give you some nice closure to that chapter! Don’t miss the opportunity!

Laura
laura

Wednesday, 10th March 2010 at 1:40 pm

John, I think you are the first one to ever call this operation “pain free”. I think it is completely worth it, but much, much worse than any other paid I have ever experienced including childbirth and knee reconstruction! you must have had some wonderful drugs:) I am jealous! My surgery was similar to yours it sounds like, an enuculation with very little of the pancreas removed though it was sitting on the artrey. My surgery was also done in Illinois, but at the University of Chicago. I am happy for you that you are doing so well. The weight loss is a very nice side effect of this wonderful operation! Stay in touch!

Laura
Peggy

Wednesday, 10th March 2010 at 10:48 pm

Thanks to everyone who is willing to be interviewed. I will be seeing her on Sat. and will make sure she has your info.

Amanda, I’m so glad someone referred you tho this sight!! I hope they can localize your tumor quickly. Just having the diagnosis is half the battle!

John, such good news! It does my heart good to hear how much easier it is now, than it use to be to put this horrible disease in the past!

Peggy
Enola Wright

Friday, 12th March 2010 at 7:38 am

Reading some of the comments on here are very hurtful. When I was diagnosed with a malignant insulinoma I was totally at a lost to find information. For example, in the UK, there was no website which specifically dealt with the subject. So I pulled together information to try and share some awareness about the topic. There is no right or wrong way to share information. Some people love forums, other’s like to chat on the phone, some people love Facebook and others hate it. What ever works for the individual is their own personal choice. Fortunately, only 10% of insulinomas are cancerous. For those who have them that is their reality - an insulinoma a rare form of Neuroendocrine Tumor (NETS). I don’t make up what it is called that is the medical term for it. Support comes in many forms and understanding and goodwill too. Just because there are other forms of communication does not mean that it undermines or serves as a threat to others. It’s just a way of creating a greater understanding for a very rare disease.
Janet

Friday, 12th March 2010 at 8:32 am

am also ok for interviewing! jandyb2004@yahoo.com
You can add me too! Anything that helps others.

Janet
Maureen Baggett

Sunday, 14th March 2010 at 10:20 pm

I’m home!! The surgery was on Tuesday, March 9 and I left the hospital on Saturday. I was operated on for 5 hours and all went well. The surgeon explained that he used a kind of melon baller to scoop the tumor from the pancreas. The two hour drive from the hospital was tough since there had been trouble locating a painkiller that didn’t give me itchiness all over or wild scary dreams. Home again with my three children and husband hovering I felt a little like a fraud. Yes, I hurt, but I’m not going to pass out, alone or wake up in an ambulance. This morning was a shock. My sugar level was normal!!!! I actually could wait to eat! Eating is no longer top on the list at all times. It will be interesting what the next days will bring. What a ride! Thanks again for the wonderful website. It saved me a lot of worry.
john rossi

Tuesday, 16th March 2010 at 1:11 pm

congratulations maureen! i wish i could have read your story before i went for my surgery. it was feb. 5th and i’m back to work now. sure glad everything worked out for you. for some reason, after the surgery, i spent a couple of weeks afraid to lay in bed, and did all my sleeping in a chair. i’d get a strange feeling in my stomach when i would lay on my side but i noticed thats gone now. also i worried about my drainage tube, which kept draining over a week after the operation, but it eventually stopped and the hole leaked for several days after they took out the tube but they said it was normal, and it healed up after a week or so. those were the only post surgery surprises i ran into, and i hope your recovery goes as smooth. it took me a month, but i’m really feeling myself again! again, congratulations!
Nicolai

Tuesday, 16th March 2010 at 1:41 pm

Maureen and John,

Congratulations to you both! Great to hear that both your surgeries have gone well. I hope Maureen gets back to full strength like John soon.

I am curious as to what type of surgery you had, open or laparoscopic? With your short hospitals stays I am assuming laparoscopic.

I will have a calcium stimulation test on Monday, so anxious to see if that resolves anything.

Good luck everyone,

Nicolai
john rossi

Tuesday, 16th March 2010 at 10:12 pm

hey nicolai, i had gained so much weight in the year leading up to the surgery, and all in the stomach, so i was not a candidate for laparoscopic. i was told the scar would be above the belly going up, but due to the weight issue, they went in with an incision that is arch shaped and goes across the very top of the stomach. i’ve lost over fifty pounds since surgery, and i feel giving up a 8 to 12 cans of coke a day habit has a lot to do with it. it sounds crazy, but thats what i was doing to keep my blood sugar up. its so nice to see that the level stays in the 100 to 120 range now! hope everything goes well for you.
Heidi

Tuesday, 16th March 2010 at 11:38 pm

Hi Everyone!

On the 19th of March it is our 1st anniversary of Mike’s surgery. What a year this has been for all of us! Scary, difficult, remarkable and life-changing. We will certainly never be the same family, but we have survived the challenge and made it through. My message to those of you who are following in our tracks, searching for answers - waiting and wondering how it will all end, let me tell you that diagnosis is one challenging hurdle, and surgery is the cure (no matter how hard the process is).
The relative rarity of insulinoma makes it difficult for most medical people to recognize or diagnose. If you are lucky they may have heard of it, but many haven’t. We were lucky that an Internist we saw in our emergency department had - that made things easier because he recognized the symptoms and sent us down the right path. It still took 8 months and endless tests (and the need to travel hundreds of miles each time) to locate the little beggar. The rarity followed us throughout the process - baffling many technicians and nursing staff, but we made it to surgery.
It went well, as surgery goes, 3 hours long, no whipple required and a good outcome expected. However, one horrific abscess, 7 weeks in hospital and a drain in place for 4 months were certainly challenging for all of us. We didn’t enjoy that part too much, but we learned we could manage. Mike, someone who had never been ill other than a rare cold, is not as strong as he was, but he is quite well. He is just a bit more fragile and susceptible to things. The fact that he is now over ‘50′ could explain it, but I really do think he has had some type of metabolic change. The good news is he has lost 50 lbs from the weigh-in the day before surgery. He is working full-time and enjoying more of life.
So persevere with the process and don’t be afraid to advocate for yourself. Since this is rare, you will end up knowing more than many medical people you will have to deal with. I found out recently that Mike was a bit of a celebrity in our local hospital and while most of the staff don’t know his name, many know about him if they had any encounters on the post-surgical ward where he stayed for 4 weeks once he came back to town. This is a hospital that serves about 100,000 population, so he was truly a rarity.

I cannot thank each and everyone of you enough for sharing, caring and being there through the difficult days. This was the place I learned what I needed to know to be the advocate for my husband. He was too ill to manage his own situation, and being the type ‘A’ person that I am anyway, I needed some way to help him. I needed knowledge for that. What I needed for myself was to talk with someone who actually understood what was happening to us - and I found that and more here.

Anyway, it is my bedtime and I need to quit rambling away here. Bye for now.

Heidi
Jackie

Wednesday, 17th March 2010 at 6:00 am

Heidi, we all followed with you on your journey. Mike and I had surgery about the same time. I would read your posts and would update the family on how he was doing. I am so glad for all of us that have gotten to the he other side. The life with the tumor was so debilitating and even now when I have a “senior moment” my family will ask ” Are you having a spell”. It is really something that effects everyone and I think as often when any family that goes through an illness changes everyone. Your posts encourage me to perserver so that you so much for sharing the journey.
Mary

Wednesday, 17th March 2010 at 6:53 am

For Stacy Green-

How are you doing now? You haven’t had any post since October 2009. I have symptoms and 72 hour test results very similar to yours. I hope you can share with us any new findings. Thank you.
Scared Wife

Friday, 19th March 2010 at 4:39 am

My husband was diagnosed on Nov 23, 09. After nurmerous tests, MRI’s, CT Scans and Blood Work; the doctors concluded that he has Insulinoma with mets to the liver. The last Dr.s app. on Feb 24 they decided the only thing to do at this point is Chemo. Which he started March 8-12. The doctors have said this is not curable but treatable. The major problem is the liver; the tumor takes up 90% of the liver so have a portion of it taken out is not an option. The pancreatic cancer is larger about the size of a lime. The splenic vein and arterty show blockage as does the lesser curvature of the stomach. What does this mean? He is further along with this diease then I relize? What in your opinion would be the next step?? How about prognosis? He my husband going to die?
Jackie

Friday, 19th March 2010 at 6:46 am

Scared wife, I am not a physician so there is no way I can give you a prognosis. Only 10% of insulinomas are cancerous so I am sorry that your husband’s tumor falls in that 10%. My thoughts and prayers are with you and your family as you journey through this time. As we all did I think you just take one day at a time. Look to your faith and support systems as you move forward. It helped me during pre and post surgery to post here and get support from all of these most wonderful people. You hang in there.
Beth

Thursday, 25th March 2010 at 3:27 pm

I am glad to have finally found a site where there is real-life information on symptoms, diagnoses and treatment.

I have been having hypo attacks since my twenties. I’ve dealt with them by eating when one would happen. Of course that meant I was always 10 pounds heavier than I wanted to be. I was told it was because of PCOS. I have some of the symptoms, but not all. Four years ago I started to be fatigued all of the time and would become exhausted after things like blow drying my hair. I would sit at my computer all day at work and just stare at the screen not being able to put together a coherent thought or I would be falling asleep. I started getting tested and was diagnosed with Hashimoto’s thyroditis (autoimmune thryoid disease) anemia, and Vitamin D deficiency. Treating those things helped but I was still feeling very tired. Any kind of exertion leaves me wiped out and hypoglycemic. I tried painting our guest bathroom one day and was hypo the entire time. I kept having to stop and eat and even that didn’t really help. I can’t walk around the mall without triggering an event. About 5 weeks ago I started the Eat-Clean diet which is all non-processed foods where you pair a lean protein with a carb and eat 5-6 meals a day. I figured if I stopped eating simple carbs and more protein that would help. Nope, still having random episodes. Last week I tried to end a meeting at work by saying we were done 5 minutes early and it came out as 5 minutes late.

So diet hasn’t helped, I’m still tired (but at least losing weight slowly) and I called my endo. He is doing a fasting insulin and the C-Peptide test next week and giving me a blood glucose monitor to check my blood sugar over the course of several days. His nurse didn’t tell me why they were doing those tests but in research on my own it seems like he’s checking for an insulinoma. Even though the surgery sounds a bit rough I’m hoping that these test can uncover the reason (if it is insulinoma) and I can be treated already. I probably won’t know until the end of next week what the results are. If it turns out to be an insulinoma I will be back.

Take care.
Jacqueline

Sunday, 28th March 2010 at 1:08 pm

I’m so happy to have found this site and forum!

By chance, when having a CT for spine problems they discovered a 2.5 cm lesion on my pancreas. They did a follow up ‘dye’ CT and yes it’s still there.

Just before the first scan they discovered I had “induced hypoglyemia” (please I may be using the wrong names here)
I now have an appointment with an endocrinologist in 2 wks.

My GP’s attitude is to just leave it? at least that’s how he’s coming across

My internist wants another opinion before deciding.

Now after reading forums etc think I’m going to push for having surgery
They know there’s something there and where it is -
I suppose at 69 yrs I’m not a ‘good’ risk but I can’t live the rest of my life like this

I have suffered chronic pain for past 5 years in the last 6 months it’s become terrible - the pain is my left side and left lower back under shoulder. I don’t know if this is from the ‘growth’ or not.
They have been trying for the past year to discover what causes the pain.
I have zero energy - no appetite - can’t concentrate - nausea - apathetic - cold sweats - one minute hot - next cold

I’ll check in again if I find out more
and also to check how Beth and others are making out
God Bless
Neil

Wednesday, 31st March 2010 at 3:57 am

Hi for the Last 2 years I have suffered from episodes of hypoglycaemia had the usual test extended glucose tolerence test and the rest, my 72 hr fast failed to trigger a hypo (bm 2.7 but no symptoms) so insulinoma was ruled out. My hypos continued but as a healthcare professional was in position to have blood taken during an episode this came back with glucose 1.9 raised insulin and c peptide so insulinoma again suspected, I have since had endoscopic ultrasound and calcium stimulation and selective arterial sampling with all negative. Next is Ocreotide PET scan to look for NET tumours outside the pancreas which is very rare indeed, not very positive we’ll get to the bottom of my problem. As my work is clinical I’ve not worked since November, my consultant has been excellent and 300mg of Diazoxide seems to be controlling my symptoms but very frustrated.
By the way as a healthcare professional with hypoglycaemia your always suspected of self administering diabetic drugs till the bio chemistry prove otherwise not pleasant.
Maureen

Wednesday, 31st March 2010 at 9:00 am

3 weeks after surgery: I’ve lost 15 pounds which is a nice treat, but the pain has been hard. I can’t take the narcotics and so have been living on Tylenol every 4 hours. The pain is related to what I eat. Three meals a day has been a new regimen. It is quite wonderful not to have an eye and hand on my next food intake. Lately, I have been trying to drink more water. Since I don’t eat as often I have not been drinking as often, either. However, today I see a window of optimism. The pain is very manageable and I do see the light at the end of the tunnel. I’m still not driving and am being pampered quite a bit.
I often think of those of you who are waiting for a diagnosis or for surgery. It is a very difficult time, but Insulinoma has an end! When you get through the rough spots there is a new life waiting for you. Hang in there!
Neil

Thursday, 22nd April 2010 at 3:43 am

Octreotide scan negative and C peptide suppression test negative, biochemistry says it’s there but imaging says not, just gonna throw my hands up and get my wife to take me to the Vet!!.
Peggy

Thursday, 22nd April 2010 at 4:13 pm

Niel,
I love your attitude. Isn’t it frusturating! After 15 years and numerous tests, finding my tumor boiled down to the having the best equipment and technician. Since you’re in the field hopefully you can push for the most experienced. It doesn’t sound like you’re in the states, but mine was finally discovered at USC by MRI.
Good luck
John

Thursday, 22nd April 2010 at 11:54 pm

Don’t give up, Neil.
This must be confirmed eventually. In my case, octreotide showed nothing, C-Peptide wasn’t mentioned, CT scan was negative, 72-hour fast test graphic in its effect - and MRI at last revealed the little monster, if I recall correctly, but only on a second check done by someone really interested. There aren’t so many of those people! The problem is the rarity of our cases.
I’m now 16 months on after surgery - absolutely fine. Life is completely normal now. The process was long and worrying. It was certainly worth every anguish and every fuss made.
You don’t have to put up with this.
Good luck!
John in London
Neil

Friday, 23rd April 2010 at 4:10 am

Hi Peggy and John thanks for your support it’s nice to have somewhere to vent your frustration especially with people that understand what your going through, your correct John in that the condition is so rare makes it difficult not only to find but also to explain to friends and family why we can’t just say it’s this and there it is now lets remove it!! I even have to explain a lot of the processes to my Consultant collegues at work! I have to say my Endocrinologist has been excellent and seems determined to get to the bottom of it, so the rollercoaster ride goes on more tests more results more disappointment but we’ll get the little bugger in the end.
April

Friday, 23rd April 2010 at 9:31 am

Neil,

Has anyone mentioned a calcium stimulation test? That’s how they found my tumor after the imaging tests didn’t work.
Jacqueline

Friday, 23rd April 2010 at 12:05 pm

OK I’m joining the frustrated list - I last wrote on 28th March - ok it’s only a month BUT
nothing happening - endocrinologist has me now listed as having goiter - all blood tests (1 still not back) negative
ultrasound yesterday

Pancreas ‘tumor’ still there - feel ill, exhausted, losing weight, nausea etc etc etc

See internist Monday -
If there is a tumor (which he thinks is insulinoma) do they not do surgery?

they know where it is they know why don’t they DO something?

frustrated Jacqueline!
Jackie Gray

Friday, 23rd April 2010 at 5:42 pm

Frustrated Jacqueline,
My concern for you is the losing weight part. Most people with that hateful tumor gain an average of 50 pounds. I don’t know if any on this site has ever said they have lost weight. The excess insulin generally facilitates storate of calories as fat plus your body is hungry all the time. It is like you have to feed it. Not saying that you don’t have an insulinoma but that is just an odd symptom.

Neil,
Don’t give up. They will find it and don’t let them stop til they do. Mine was found with blood tests and a follow up CT scan. I had had symptoms for a year not knowing what is was. A bad hypoglycemic episode sent me to my primary doctor and tests showed high insulin levels along with very low blood sugar. It was a fasting test and it was obvious that my pancreas was overproducing insulin without the sugar triggering it. A follow up CT scan found it. I was one of the lucky ones. Most on this site had it much harder. Hang in there.
Neil

Saturday, 24th April 2010 at 5:22 am

Hi everyone thanks for your support it’s greatly appreciated, April i had a Calcium Stimulation Test about 5 weeks ago which was negative but I’m determined to find it! Waiting for Triple Phase Ct next fingers crossed. Jacqueline I agree with Jackie one this one weight loss is not a recognised symptom of insulinoma, if they are sure there is a lesion of some sort in your pancreas I don’t understand why they don’t operate unless they’re not sure of precise location. Plus if you have a goiter and a panceatic lesion have you been screened for MEN 1 think it’s time to make some noise quite often the only way to get things moving is to rattle a few cages and I’m saying this as a healthcare professional myself sad but true.
tatia batz

Saturday, 24th April 2010 at 8:24 am

Neil,
My insulinoma was found only by an Upper Endoscopic Ultrasound. I had had all the tests done as listed on the other posts and they did not show anything. I then had this test done in my city and it found nothing. I then went to another city and hospital and had the UEU and they found it and biopsied it. It also showed up on a ct-scan at this particular hospital but not the one in my city where I live. Keep trying and sometimes you have to look elsewhere to get the help you need. I am now 16 months post op from removing my insulinoma. I have my yearly check up oppointment on Monday and anticipate all will be good. Hang in there and do not give up, you will triumph.
Neil

Tuesday, 27th April 2010 at 8:49 am

Thanks everyone for their replies I had an endoscopic ultrasound last December with no abnormality detected, it would seem some investigations find insulinomas where others don’t, but no one test or scan seems to give a definitive answer in all cases it seems to work on an individual basis, suppose this is why we’ve all suffered a degree of frustration in our struggle to get that diagnosis or imaging we need.
tatia batz

Tuesday, 27th April 2010 at 3:38 pm

I think I forgot to mention I had 2 Upper Endoscopic Ultrasounds within 2wks at 2 different hospitals. The second hospital found it but not the first. It might be worth another try at another hospital or imaging center. I wish you all the luck Neil, please keep us posted.
Neil

Wednesday, 28th April 2010 at 4:57 am

Thanks Tatia that’s very interesting that the same investigation carried out at a different hospital can yield different results if it wasn’t difficult enough to pinpoint the location of an insulinoma with all the imaging facilities available and the fact the no one is a gold standard test for finding them we also have a inter hospital variable as well don’t know whether to laugh or cry!
Rudy

Tuesday, 11th May 2010 at 2:40 am

Hi,

Long time lurker first time poster, I have been having hypoglycemic episodes for a couple of years now, I had apparently been just staring at the televison for about 6 hrs, I had absolutely no recollection of this, girlfriend decided enough was enough and forced me to see a doctor, the doctor advised I take a fasting sugar test, I went to the surgery on the day of the test, it was a wednesday, a nurse took my blood samples and said I’ll have the results by friday, I got back home, I got a call within the next four hours by an emergency GP who asked me to get admitted to the Brighton Hospital due to dangerously low blood sugar levels, my sugar level was 0.8, strangely enough I felt okay ? my body had adjusted itself to the low sugar levels. At the hospital they conducted a series of tests, I didn’t go through a 72 hr test, they just waited for my blood levels to drop below 3, they did;nt have to wait long, took blood samples and the results were as follows

Plasma Glucose - 3.8 mmol/L
Serum Insulin - 386 pmol/L
Serum insulin C Peptide - 2074 pmol/L
Result: Insulin & C Peptide inappropriate for glucose level, consistent with insulinoma or sulphonylures use

They then did a CT Scan of my abdomen, Results as follows

CT Pancreas With Contrast :
There is a 13 mm arterially enhancing lesion within the pancreatic head which in the clinical context may well represent an insulinoma. The pancreas appears otherwise unremarkable. A small focus of hepatic calcification is noted. No further significant findings.

I have since been referred to Kings for sugery, I was referred on the 15th of April, it’s almost been a month and I haven’t heard from Kings, nobody seems to know anything when I call Kings, they can’t even locate my on their computers, the secretaries at Brighton Hospital are asking me to give it some more time :-(, getting very frustrated

I have had a couple of other strange symptoms as well.
1) I have very dry mouth, I am forever thirsty and feel the need to drink water almost all of the time
2) my eyes hurt a lot, I work as an IT engineer, I can’t stare at the monitors for more than 10 mins, the doctors tested my for Sjorgen’s syndrome, but the results came back negative, I went to the optician as well, my eyes are apparently fine ?

3) Over the past couple of weeks I have had dull stomach ache, I feel bloated all the time, I can feel gas forming in my stomach as soon as I have eaten or immediately after passing stools, I have been prescribed omepresol, it’s not helping at the moment

4) I have bodyaches, dull chest ache and back ache

The doctors seem to think it is due to anxiety and stress, Did any of you have any of the above symptoms ? I am very worried as I dont know if these symptoms relate to the tumor I have in my pancreas ?

I just hoping I’ll hear from Kings soon, has anyone been operated at Kings before ? I only read one instance (Richard) being operated at Kings ? Sorry about the long post and thanks in advance for taking time to help

Regards
Rudy
laura

Tuesday, 11th May 2010 at 10:24 am

Rudy, thirst is definately a symptom of low blood sugar, as for the others, I have not heard them mentioned specifically, but what I do know is after surgery, your body will change so much that it is remarkable. you will not believe how much better life will be. It is like being a new person, and I am not exaggerating. I would encourage you to follow up with the hospital and get a date as soon as possible. Maybe showing up on their doorstep next time you have low sugar would encourage them along. In my experience, the medical profession does not take this condition seriously until you are experiencing low blood sugar right in front of them. Quite unfortunately really! Good luck!
John

Tuesday, 11th May 2010 at 10:44 am

Hi everyone.
I’m Fiona, wife of ex- insulinoma John. Operation Jan 2009. I sent LOTS of posts during that time and am still incredibly grateful for all the support people gave me, and him, on this site during that time. This is THE best forum for insulinoma - let no-one disagree!
It has now been 17months since John had his insulinoma removed and I now want to send a post saying how fantastic things are now!
After a nervous 6 months or so after the operation, John now has no symptoms at all. None! He is back to the man I married nearly 29 years ago (this September 5) and this whole experience is gradually melting into ‘things that happen to people’. He’s still coeliac and that has to be considered every day, but as far as blood sugar goes - nothing - nada!
It’s brilliant.
That year we both spent worrying about him eating enough to keep him ’sane’ are gone, and if he has to miss a meal because of work (we’re both musicians) then it’s not a problem! It’s funny tho - if he knows there won’t be enough time for lunch or ‘tea’ he still thinks of the dreaded cereal bars, but then I remind him that it doesn’t matter any more! He can eat at 10.30 after the concert, or wait til he gets home…that’s something he has taken a LONG time to get used to. He’s normal!
There really are NO lingering symptoms after the operation. I will admit tho, that I am always on the look out for anything that might point to a new insulinoma. It’s one of those taboo subjects that will not get aired until, (or if,) it shows. We both assume it won’t tho, and that’s right! Only a 1% chance we were told, so that’s what we’re going with. And so far so good!

So - to all sufferers - life really really does go back to normal. This is a horrible disease and it causes the most horrible anxiety for everyone around the person with it, but it’s perfectly curable! Hurrah!

Best wishes to all

Fiona
Joslyn

Sunday, 16th May 2010 at 9:27 am

Hi all. I am waiting for bloodwork (c-peptide, cortisol, insulin, glucose) to come back to determine if I need to do the 72-hour fast. I’m trying to be as informed as possible going into it. My question is this — who normally oversees the 72-hr fast — an endocrinologist or an oncologist? Who does the surgery if you need to have an insulinoma removed?
Jackie Gray

Sunday, 16th May 2010 at 11:32 am

Rudy
You need to see who they contacted at King’s Hospital and contact that person. These low sugars are extremely dangerous and I think could cause permanent harm. I don’t think it is a bad idea to show up at the hospital and refuse to leave until someone talks to you. They have found this awful tumor and you need surgery. Fight the good fight and don’t give up. For most the hardest was finding the thing. I am afraid your paperwork is either lost or sitting in a pile somewhere. Good luck.
Rudy

Sunday, 16th May 2010 at 4:06 pm

Laura. Jackie many thanks for trying to help, how can one know if the tumor is benign or malignant without histological observation ? are the symptoms different ? I am 33 and terrified that it could be malignant. I’ve since heard from Kings, I have an appointment to meet a member of Dr Schultee’s team on Monday, it could’nt have come sooner, my stomach ache has gotten worse, none of the medication I have been prescribed seem to be helping, I am terrified of surgery but can’t wait to get operated, I’ve felt terrible the last couple of years, I’ve always had this “drunk” feeling, I’ve sat through meetings unable to concentrate, I’ve lost the interest and enthusiasm to do anything, it’s affected my personal and professional life badly, my girlfriend’s been a great she’s been very supportive, I just want my life back and start doing things we both love doing. I am just waiting the for the doctor to do his magic so that I am rid of this problem once and for all. Thanks again all, really appreciate all the help

Regards
Rudy
laura

Monday, 17th May 2010 at 1:56 pm

Rudy, the good news is these tumors are almost never cancerous. Take heart in that. You still need the surgery though as even without being cancerous, these tumors are very dangerous as to your blood sugar. I highly suggest you get a blood glucose monitor so you can watch your self and not drive or do anything crazy when you have low sugars.
Mel

Wednesday, 19th May 2010 at 8:08 am

Hi All! My name is Mel and i live in Melbourne, Australia. I am a 34 year old mother of two, and I was diagnosed as having an insulinoma in February.

I suffered a hypo whist at work, which proved to be good timing, since I work in an Emergency Department. Luckily, they could check my bsl at the time, which was 2.4, and they admitted me. I spent 5 days in hospital having abdominal u/s, 2 cat scans and the 72hr fast, which they ended after 18 hours when my bsl had dropped to 1.4. I also had to have an MRI. All radiology failed to show anything. My blood tests showed low glucose and high insuln, consistant with Insulinoma. I have been monitoring my levels 4 times a day, which show that i am low first thing in the morning, but late morning is my worst time.

My endo referred me to the Head of Endo at the Alfred Hospital because he thought i needed to see someone older and more experienced. My new Dr arranged an Angiogram with calcium infusions, which showed incresed insulin from 2 of the 3 arteries. I was then referred me to a surgeon - Dr Peter Evans, who believed the tumor was located in the middle of the body of the pancreas. He requested that i have an endoscopic ultrasound to try to localise the tumor prior to surgery, and i had this done yesterday. The results show an ill defined area in the head of the pancreas,the size 0.71 x 0.87cm.

I am scheduled for surgery on the 31st May, but due to the results from yesterday, we are not able to do a laprascopic procedure - it will definately be open. I have been warned that we may need to do a Whipple, but my surgeon is keen to avoid this if at all possible.

It difficult trying to manage my own health problems, whilst working part time, and being a single mother (recently seperated). Thankfully my mum has been a huge support, but you can see the impact this has on the kids (aged 3 and 11) I guess all i can do right now is try to get things as organised as possible, in anticipation of being out of action for the next month or so.

Thanks for listening!
Mel
Anne

Wednesday, 19th May 2010 at 2:09 pm

Anyone had experience good or otherwise of treatment from Doctor Michael Lam for adrenal fatigue?
Mel

Saturday, 22nd May 2010 at 2:58 pm

Has anyone had surgery without the epidural? My surgeon is chosing to use morphine only.
Jon Mikel Iñarritu

Saturday, 22nd May 2010 at 3:03 pm

It’s not surgeon’s choice, it’s anesthesiologist’s
Kim

Saturday, 22nd May 2010 at 4:09 pm

Mel, Are you talking about post-op … for the pain? I never had an epidural but had an IV pump for morphine post-op. It worked beautifully. When I was switched to pills, it was crucial to stay ahead of the pain because if I was in pain, it was too late. The oxycodone made me feel terrible though and I switched to tylenol after a couple of days.
Jane

Saturday, 22nd May 2010 at 4:36 pm

Jon Mickel

I’ve wanted to ask you for ages: are you related to the film director Alejandra Inarritu?

Jane (UK)
Mel

Sunday, 23rd May 2010 at 3:52 am

Hi Kim - my surgeon said that i will get a once off morphine injection into the lower spine, and then self administering morphine post op. He anticipates that after 7-10 days in hospital, i should be off all pain medication within a week of going home… here’s hoping :)
Another question - how did anyone explain this process to young children? My 11yr old is well informed and aware of what is to come, but its hard to know what to say to my 3 yr old.

Mel
Mel

Sunday, 23rd May 2010 at 4:02 am

Jon Mickel

Thanks for your reply!
I was under the impression that it was the surgeons choice, because when we asked about it (thanks to information gathered from this wonderful and informative forum), he said that there is no proven benefit to the pt for having an epidural, and that it just creates another line/tube to be worrying about post op. I will be sure to ask the anaethitist for his opinion when i meet him on op day.

Thanks Mel
Kim

Sunday, 23rd May 2010 at 8:01 am

Mel, I have three children but they are quite a bit older than yours. I suppose it depends on the nature of your relationship with him and whether he’s an independent, busy type or might prone to worry - are you around the house a lot? or are they used to your being gone for periods of time? If I were in your shoes I guess I would be succinct, positive and not go into too much detail but answer any and all questions because at that age they can certainly ask a lot of questions! It’s a good opportunity to ask your 11 year old to step up to the plate and be helpful, but he being older might be more sensitive - don’t assume that everything is hunky-dory with him. My two cents! All will be fine and you will healing soon! Best wishes!
tatia batz

Sunday, 23rd May 2010 at 3:42 pm

Mel-
As far as what to say to small children I believe the least possible is best. My children were 3 and 6 yrs when I had surgery last December. I was not here in my own city so my children never saw me in the hospital. They did see me at home with a drain and knew I could not be their mommy quite the I had been before. I ended up being sick for 3 months so it was a little different with me. They new I had surgery to make me better so that I could be the mommy I once was. They also were quite aware of my condition and the frequent episodes of my confusion and not being able to do anything. They did not want the ambulance to come to our house again to wake up mommy so they new I would be better after having the surgery. Sorry so long winded. Give them the brief situation and then wait for them to ask questions. They will let you know how much they can take and understand. Good luck to you!
Tatia
laura

Monday, 24th May 2010 at 12:02 pm

I had the epidural, when I first came out of surgery, I could not believe the pain. They finally figured out that the epidural had “pooled” because i was laying too flat. Once they put my head up a bit, it was wonderful. I would have taken it home wiht me if I could, it really did an excellent job of controlling the pain. After that, I had teh IV pump which was not as good, but adequate. Then I went to the pills. To me the epidural was most worth it because once it was working, my pain was so controlled taht I could rest and focus on recovery. has anyone on here who has had an epidural regretted it or wished they had not gotten one?
Susan

Monday, 24th May 2010 at 12:17 pm

My 83 year old mother had an epidural put in before surgery and it was kept in for several days after surgery. She never even needed a pain pill during her recovery after leaving the hospital. They were planning on using general anaesthesia, but thanks to knowledge from this site, I requested the epidural on the morning of the surgery and they agreed.
Debbie

Monday, 24th May 2010 at 2:45 pm

I had an epidural put in before surgery and I would highly recommend it. I hated to see it go! It was left in for several days after the Whipple, and then I was on a pain pump. After getting out of the hospital I took pain meds for a couple of days but was too constipated ( hate to be so graphic) so I went over to Tylenol.

My one year anniversery comes up June 11th. Blood sugar is great…no more “episodes” …YEAH.
Heidi

Tuesday, 25th May 2010 at 11:57 am

Hi Everyone,

I am still checking in periodically and just wanted to comment that when my hubby Mike was sick with his insulinoma, our teenaged son was already well aware that his dad was not in good shape, however, he had a very bad reaction to the surgery itself, as Mike had serious complications and delayed his return home to Prince George from the hospital in Vancouver by 3 weeks. He was home for 5 days before our family doctor admitted him back to our local hospital and he stayed for another 4 weeks to be treated for a serious complication of his surgery.

This process was devastating for our son, as it turned out he was already well into developing a serious case of anxiety and depression. Between the death of my mom the year before Mike got sick and the challenges of being a teen, our son got a bit lost in the shuffle of Mike’s health. He was so worried about his dad (much more than we were really aware of because he didn’t really say much) his mental health really suffered. We have gotten him help and the psychiatrist says he suffered a series of catastrophic stresses at a critical time in his life and this may never go away even with long term treatment. (and doesn’t that make my heart ache!) Our boy has always been seemingly mature and very smart and we were probably lulled into thinking he was coping much better than he was in reality. In hindsight I am still not sure what we could have done much differently other than talked more about all our fears (I was very scared MIke would die too).

I would tell you though, kids know when things are not right and all of you with children cannot hide the effects of your insulinoma illness or the surgery from them. If they are very young, they may not have known the ‘original’ parent, just the sick one, but older kids will already know you are different than before - our son certainly did. We just couldn’t put a name or explanation to it until Mike finally collapsed and was finally diagnosed.

I might suggest that you seek some counselling for your kids to talk about their fears. I wish I had the foresight to do this for our boy. I have since learned that kids entering their teens and puberty are highly suceptible to developing anxiety and the health of a parent is a very important factor to consider. Our boy is functional today but has ended up a year behind in school, and he continues to need counselling and care to deal with his anxiety disorder.

Good Luck! We are now a year past Mike’s surgery and he is physically well and as returned to his job as a teacher. I would note however, he has not bounced back emotionally as well as he did physically. He is still more withdrawn and isolated than he was and I wonder if he is depressed too.

Heidi
Jane

Tuesday, 25th May 2010 at 4:06 pm

Heidi
Am I recalling correctly that your son was diagnosed with Asperger’s Syndrome? If so, then this condition will quite possibly explain a great deal about the anxious personality………..
Like you say, you could not have done things very differently. We all have to play the hand we are dealt with.
Good luck with it all.
Jane
Heidi

Tuesday, 25th May 2010 at 10:26 pm

Hi Jane,

Our son was suspected to have Asperger’s, as he has some of the symptoms, but ultimately, it was determined that he does not. He did get a diagnosis of Developmental Co-ordination disorder which is a learning disability that involves extremely poor motor skills and other challenges. Because he is very smart (as many with this disorder are), he masked the problem with his verbal output until he hit high school. He has poor muscle control over his whole body, can’t tie shoes, trips over his own feet, falls down stairs easily etc. which is just weird for a hulking big boy of 6 ft and well over 200 lbs. who can discuss politics and history so well.

The anxiety was developing as he struggled with the transition to high school - particularly in keeping up with the written workload and the death of his grandmother and subsequent illness of dad, pushed him over the edge completely. The final diagnosis of his anxiety, depression and learning disability didn’t get confirmed until June of 09 when he was already 16. Do I wish we had known this much earlier - absolutely. We know he was subtlely different than most of his peers, just know how much and what the effects would be.

The important thing is, no matter what the label is, we have to look after each other!

Thanks for your kind thoughts. Man is parenting hard work with two healthy parents, never mind when people are not well.

Heidi
Jon Mikel Iñarritu

Thursday, 27th May 2010 at 3:11 am

I agree with you Heidi, We have to look after each other
Jane

Thursday, 27th May 2010 at 11:46 am

Heidi,

Hi again! Here we call DCD by the term dyspraxia which does cause such a range of difficulites that sometimes, unless you know what you are looking for, you would overlook it or mix it up with some other difficulties. Or else it can exist at the same time as other specific difficulties (It is called co-morbidity: a horrible word!) I have children with severe to mild DCD; it is not an easy haul. But interesting! Should you wish to exchange email addresses I am happy to chat via email. You don’t have to feel on your own. As I’ve said before, I’ve been to Prince George albeit decades ago but live in the UK.
Very good luck,

Jane

OK, I know this isn’t about insulinoma…………..
Heidi

Thursday, 27th May 2010 at 1:05 pm

Thanks Jane,

No, this isn’t about insulinoma, but it was a key factor in our son’s problems coming to a crisis point while we were going through the ‘cure’, and so I consider it a major component of where we are today. Anyway, since it is off topic, I am at hshearman@shaw.ca. for a private chat on the topic of our kids.

I had just wanted to let folks here know how insulinoma recovery is a family problem and your kids are involved whether you have direct conversations about it or not. The kids know that things are not right in the family and they often have serious fears that the parent who is ill is going to die - hey - I thought he was possibly going to die too! I wish we had been more aware of it, because of our son’s underlying mental health issues. I recently had some surgery to correct a non-life threatening problem and our boy was instantly stressed out - he cannot deal with his parents being in hospital!

So, Parents talk to your kids about what is happening - they are already worried about you!

Heidi
Mel

Saturday, 29th May 2010 at 8:09 pm

Hi everyone!

Thank you all so much for taking the time to respond! Your feedback and comments have really helped me, both with addressing this with my kids, and with me understanding this illness and the the surgery and recovery process. I realise that it is different for everybody, but at least i know what to expect!

The time has crept up on me, and i am being admitted tomorrow morning for my surgery. I have been really busy trying to get everything organised with the kids and their activities (trying to keep things as normal as possible for them whilst i’m out of action).

I’m feeling a bit anxious and scared, but looking forward to getting on with my life as a healthy, happy and insulinoma free mum.

Again thank you to all, for sharing your stories

Mel
tatia batz

Saturday, 29th May 2010 at 9:07 pm

Mel,
I wish you all the best! I will be thinking of you in the next few days and weeks. Please let us know how you are doing. Can’t wait to read a post from the “new” and improved Mel.
Heidi

Sunday, 30th May 2010 at 1:06 pm

Mel, I wish you all the best in your surgery and recovery. As you will see from these posts, most of the insulinomiacs recover quite well and have few complications.

Because you are an active participant in your medical system, you may have a small advantage, since they got you in for your testing quickly and the time from diagnosis to surgery seems quite short to me. You will have a good support system there. Many of the sufferers have waited much longer to get to the people who could help them.

My family’s story was not the easy route, but we still felt that we were well cared for, and got good help. It was just a fluke things went off the rails and we had such a struggle to get back on. The best I can tell you is that your kids will be very glad when they are able to see that you are getting better, and there is virtually no chance this could happen again.

Once you are able, do let us know how you are getting on with things. We like to celebrate every successful conclusion here!

Heidi
Jackie Gray

Sunday, 30th May 2010 at 2:23 pm

Mel, when you read this you will be through the surgery and starting on your road to recovery. Each day the pain will get less and you will get stronger. Even through the recovery the most exciting will be no more low blood sugar crashes. It is over and you now have your life back. Rest and recover and let us hear how you are doing. I am a year and 1/2 from my surgery and was just marveling on the difference today. All the best.
Mel

Wednesday, 9th June 2010 at 1:39 am

Hi everyone,

Well i am back at home and recovering well following my surgery. They found my insulinoma in the head of the pancreas, and thankfully could remove it without a Whipple - although the Dr said that it was very close. He also had to do a liver resection, where he removed 10% of my liver as he felt another small mass under the surface of liver. Thankfully, the pathology has given me the all clear, and the lump in my liver was unrelated to the insulinoma.
Surgery went for about 4 hrs, and i had 7 days in hospital. My scar is about 20cm long and looks very neat.
Thank you all for your kind support and well wishes.

Mel
Nicolai

Wednesday, 9th June 2010 at 11:14 am

Hi all,

Mel, I am so glad to hear that your surgery went well and that you didn’t need a Whipple! Sounds like you got lucky there – good thing you had a qualified surgeon. 7 days in hospital sounds like things generally went quite well. I hope that you have a continued good recovery, and will never have to deal with low blood sugar again.

As for myself, my insulinoma was finally found during an intra-arterial calcium stimulation test. It turns out it is in the head of the pancreas, and not in the tail, which my doctors had been telling me for the better part of a year (due to an initial endoscopic ultrasound). So now I am also terrified of the dreaded Whipple. Still waiting on the final word from the surgeon I want, but the location doesn’t sound too promising. Since my symptoms are relatively mild compared to other “insulinomiacs” (but still very annoying) I am considering not doing the surgery if a Whipple is needed – we shall see.

Good luck to everyone.

Nicolai
Heidi

Wednesday, 9th June 2010 at 11:36 am

Nicolai,

Our surgeon said that the dreaded Whipple is usually the worst case scenario, and they will do everything to avoid it if they can. He warned us that if the tumour is in the head, it is always a possibility, but that is not their aim because of the serious side effects, so talk about it with your surgeon, but he won’t be able to give you any guarantees. They can only work with what they see when they are already inside you.

The thing we found was that the symptoms of insulinoma progress from moderate to severe in a relatively short time and once you are having noticeable problems you are already heading for trouble. Delaying for too long may put you in a situation you cannot control and cause other risks - like traffic accidents or collapsing in a place you are not safe. This is not a self-limiting illness - it gets worse over time, so be prepared that it will come to surgery sooner or later, and you will be glad to get it behind you.

Mel!
Welcome back to the land of the living! 7 days of hospital isn’t too bad, and if you are already managing at home (hopefully with help) you are 90% there. Don’t push it - surgery is hard work, but you are doing well. Your kids will be so relieved.

Heidi
tatia batz

Wednesday, 9th June 2010 at 12:20 pm

Mel,
It is go good to hear from you! Congratulations on being on the “other side” of having an insulinoma. I hope you are dong well at home and have a speeding recovery. Glad to hear everything went so well. Keep in touch.
Tatia
April

Wednesday, 9th June 2010 at 12:43 pm

Nicolai,

I had surgery for my insulinoma last July and am really glad it is over. Like you my symptoms were fairly mild compared to what I have read about - I never fainted or had epileptic spells - I just had to eat a lot to control the symptoms and get up in the night and eat and gained a lot of weight because of that eating.

I had considered not having surgery if it was in the head, but luckily mine insulinoma was in the tail. The surgery went well and I recovered after about a month. I can still feel the scar and the muscles in my stomach are still weak.

I just wanted to let you know that I understand your concern about whether to have surgery and though I am glad I had mine, I don’t think it is necesarily the best thing for everyone. Remember there is the possiblility of trying medication, though it isn’t supposiblily all the great. And who knows maybe they will improve the procedure and if it gets worse you can have it then.

I wish you best in your decision making. It is a big decision.
Sue

Monday, 14th June 2010 at 2:13 pm

Hi. I haven’t posted since February. I had my 72-hour fast in January and my glucose never dropped below 62. So, that was that. I have since cleaned up my diet and eat hardly no simple sugars, but lots of protein and veggies, and just now adding in fruits.

I had been diagnosed 20 years ago with reactive hypo. In the last year now my sugar has been dropping really bad.

I have been relooking at an insulinoma, and in some medical journals have found articles on some patients with an insulinoma that don’t drop during fasting but DO drop after glucose ingestion, such as a glucose tolerance test. These patients surgically had their tumors removed and all was well.

My question is, has anyone here had a glucose tolerance test initially, and what was your glucose and insulin pattern during that test?

I am so lost!
laura

Monday, 14th June 2010 at 2:27 pm

Sue, do you have a blood glucose monitor? I recommend you get one and chart your sugars. write it down when you wake up and every time before you eat, and then an hour after you eat. After a couple of weeks, you will have good info to show your endo. My biggest issue for this was I was using so many strips that my insurance was complainnig about paying for them, but they did eventually. It does not go on forever, just a couple weeks. After you are done with your chart, you can still use it to check yourself before you drive or do anything dangerous to make sure you are ok. good luck!
Sue

Monday, 14th June 2010 at 4:26 pm

Thanks, Laura.

Yes, I bought one a year ago, and mostly test when I feel low. Everytime I am 60 or under. This morning I didn’t have symptoms until I was 50, but the lowest I’ve gotten is 39.

My fasting average is fine in the low 80s, and then I will go up in the 110s(average), and then by 2 hours after breakfast, I am in the 60s or 50s. That is just eating an average breakfast, like cereal(non sugar) and milk.

Today I had my usual iced tea(lightly sweetened) at 8 am, oatmeal(no sugar) with 5 fresh cherries at 9 am, a handful of pistachios at 10 am, and at 11 am I was shaky and hot with a glucose of 50.

I try to eat healthy, decent food in case I am swinging due to excess sugar, but I still get into trouble. I pay for my own testing supplies. I have tested enough over the last year to know exactly what my body is doing.

I ask about the glucose tolerance test because my sugar went up in the 180s, but so did my insulin. When I crashed into the 50s at 2 1/2 hours, my insulin was still in the 30s. I know that in the FASTING state, that high of an insulin with that low of a glucose would be diagnostic of an insulinoma. But does anyone know about the postprandial state???
Anne

Tuesday, 15th June 2010 at 2:01 pm

Does high Dhea and low cortisol levels indicate an adrenal tumour. If not does anyone have any idea what it might mean?
Sue

Tuesday, 15th June 2010 at 4:00 pm

Hi Anne,

I’m pretty sure a high DHEA-S can mean an adrenal tumor(benign), as I’ve had that looked at before.

Low cortisol would not mean an adrenal tumor. Low cortisol would mean Addison’s disease, either primary because the adrenals fail to put out cortisol, or secondary, because the pituitary fails to stimulate the adrenal glands to make cortisol.

Would you mind sharing your lab results? I am curious what your numbers are.
Rudy

Tuesday, 15th June 2010 at 8:19 pm

They have run further tests on me, I am slightly concerned by the results

1) I’ve got very low Growth Harmone Levels, quick googling seems to suggest pitutory tumors cause low GH levels
Growth Harmone 1.8 ug/L, should be greater than 6 ug/L
Insulin-like Growth Factor 1 - 167 ug/L, this seems to fall within normal range

2) I have a lot of lipomas

- Could this mean MEN1 ? usually in MEN1 excess harmones are produced by tumors in multiple endochrine glands isn’t it as opposed to lowering the harmone levels ?

3) MRI scans have made note of significant focal steatosis throught the right liver

I don’t drink at all, one of the causes of steatosis in liver is prodcution of excess insulin locally in the liver, this could mean insulinoma metastases in the liver (the CT/MRI scans have not detected a tumor in the liver as such)

I am really worried about this, but can’t talk to anybody as my surgeon is on annual leave and isn’t back until early July, anybody have any ideas ? appreciate the help

Regards
Rudy
Rudy

Tuesday, 15th June 2010 at 8:19 pm

They have run further tests on me, I am slightly concerned by the results

1) I’ve got very low Growth Harmone Levels, quick googling seems to suggest pitutory tumors cause low GH levels
Growth Harmone 1.8 ug/L, should be greater than 6 ug/L
Insulin-like Growth Factor 1 - 167 ug/L, this seems to fall within normal range

2) I have a lot of lipomas

- Could this mean MEN1 ? usually in MEN1 excess harmones are produced by tumors in multiple endochrine glands isn’t it as opposed to lowering the harmone levels ?

3) MRI scans have made note of significant focal steatosis throught the right liver

I don’t drink at all, one of the causes of steatosis in liver is prodcution of excess insulin locally in the liver, this could mean insulinoma metastases in the liver (the CT/MRI scans haAve not detected a tumor in the liver as such)

I am really worried about this, but can’t talk to anybody as my surgeon is on annual leave and isn’t back until early July, anybody have any ideas ? appreciate the help

Regards
Rudy
Rudy

Tuesday, 15th June 2010 at 8:47 pm

The harmone tests were done when my sugar level was 2.7 mmol/L, CPeptide 837 pmol/L and Insulin 8.8 mlU/L
Anne

Wednesday, 16th June 2010 at 12:31 am

Thanks for your interest Sue.These are results for my partner. His tests were done in England so units may differ from American units.
Cortisol
8am -3.9NHOL/L , 12 mid day - 2.3, 4pm - 2.2, midnight - less than o.33

Salivary DHES-s
8am -26.9, mid day - 12.6, 4pm -16.6, mid night - 10.0
If these mean anything to anyone please help.
Sue

Monday, 21st June 2010 at 1:51 pm

Anne,

I am not real familiar with salivary results, so I wouldn’t know anything.
Sue

Monday, 21st June 2010 at 1:54 pm

I have a general question for those who have experienced hypoglycemia:

What were your physical symptoms when it “hit” you? What did your body do?

I know I’ve read it in many places, but it doesn’t compare to when you hear it first-hand.

Thank you.
laura

Monday, 21st June 2010 at 2:18 pm

When I had low sugar I was very confused. Had you asked me what is 1 plus 1, it would have been hard for me to give you an answer. I spent a lot of time just staring strait ahead. When driving it was awful, it was very hard to stay in my lane and very hard to see for some reason. I had other times where I felt very faint and one time almost went over a railing while holding my infant. It got to a point where I did not trust myself to be alone with my kids, it was that bad.
steve

Tuesday, 22nd June 2010 at 7:51 pm

Rudy,

I actually have MEN1 myself with malignant Insulinoma. I had a whipple surgery in Jan. of 08 at U. of Iowa, and a Total parathroidectomy at UCLA last year for my Hyperparathyroidism. I also have a pituitary micro-adenoma but it is non functioning, so we are just watching it.

you are correct that Lipoma’s and Insulinomas can both be a part of MEN1. have they checked your PTH and Calcium levels? The Parathyroid issues are sometimes the tell all if you have one of the other Endocrine issues. i was told that if you have two of them, (pancreas, pituitary or parathyroid, and in some cases the angiofibromas/lipomas etc) that they consider that a “clinical” diagnosis for MEN1. i actually had genetic testing done and they were able to find the mutation to confirm the clinical diagnosis for me.

have your docs said anything about the possibility of MEN1? I would ask them if they think it is something to look into. good luck!!

regards,

Steve
Richard

Friday, 25th June 2010 at 3:07 pm

Hi All,
Well here I am, 2 and a half years post op from having my insulinoma removed at Kings College in London. I guess this is more for those about to undergoe an op.
I was told by my surgeon that my life would start to change after about 3 months from surgery. He was spot on. My confidence was boosted beyond my wildest imagination. My ability to remember things improved a hundred fold. I can’t remember the last time I had a cold. In short, I’m a completely different person from the one I was 3 years ago. I went thru hell to get here and I really feel for those diagnosed with this horrible tumor but please be assured, the life you get post op is everything you want it to be. I still wake up almost euphoric every morning that I’ve got another day on this wonderful planet. Thanks also to this site for all the info and support I was given.
nicky

Sunday, 27th June 2010 at 11:55 pm

Hi everyone :)
Just been catching up on whats been going on with everyone. Great to hear so many wonderful success stories and a few concerning ones. This site truely is a godsend, people need to lean on others who understand where they’re coming from.This condition has to be experienced to be believed, only we and those close to us can see what it does to our everyday lives.
It will be 2 years in August since my surgery and I feel great! I still stop and wonder whether I should have eaten something though when I’m out and about, hard habit to break I suppose ;)

Now it seems its my husbands turn, he has been diagnosed with a rare squamous odontogenic tumour of the jaw, we are special getting all the rare stuff! We’ll be in Melbourne having that dealt with next month. He’s never relly been sick so at least I can give him all the ins and outs of hospital life.

I noticed there’s been another Australian pop up recently, it seems we’re rarer than most with our low population, if only more of us could find this site. Hope you’re doing well Mel if you would like to get in contact let me know and I’ll organise an email ok.

Best wishes to everyone and take care x Nic
Neil

Monday, 28th June 2010 at 12:18 pm

Hi Sue,
When I have a hypo intially I feel light headed and my hands start to shake I start to shake and I have tingling of the lips. Next I become confused if someone asks me a question I have to concentrate really hard to formulate some sort of answer and even then my speech is stuttering and dis-jointed. I’ve never actually passed out but have come close. It’s a horrible feeling and unlike anything else I’ve experienced, luckily now I’m stable on Diazoxide 300mg but have had no luck locating the little beast.

I’m now awaiting referral to Prof. Meeran in London.

All the best to all out there. Neil x
Sue

Thursday, 8th July 2010 at 1:10 pm

Thanks all who talked about their symptoms. I find that I also get the shakes first thing, and then I get really, really hot, then anxious. I never let it pass that stage to see how low I go or anything. I do notice that my mind “fixates” on getting something sweet. Nobody can talk to me, as I ignore everything else except getting my sugar “fix”.
Sue

Thursday, 8th July 2010 at 1:18 pm

Now I have a specific question.

My immediate health issues(not the hypo part) is that I have POTS, or postural orthostatic tachycardia syndrome that began 4 years ago. I get lightheaded and my heart races when I stand longer than a few minutes. It is VERY life-limiting, as I can’t go do shopping or anything I used to do.

In researching about hyperinsulinemia, I came across some medical literature about insulin causing vasodilation in the body. Most of us with POTS have vasodilation, and then when we stand, the blood “pools” in the extremities. Then the brain doesn’t get enough blood and the adrenaline kicks in, causing us to get heart rates of up to 160 in some people.

My question is, with all the insulin that y’all had, did you notice that you were lightheaded when standing at all?? Did you notice that you were heat intolerant at all??? I am just trying to find out if I can correlate high insulin levels(chronically, for years) with the body getting orthostatic issues. I have found out that some of us POTS people have had “reactive hypoglycemia” for as much as 20 years. Our glucose drops into the 30s, and that just isn’t normal. I’m hoping to talk to my endo to see if she can tie my chronic hypos together with my POTS. Thanks for any feedback!
Rudy

Sunday, 11th July 2010 at 5:03 am

It’s now 4 months since I was diagonised with insulinoma, I still don’t have a date for my surgery, Dr Klaus Martin Schultee the surgeon who was to do my surgery is apparently not an expert on insulinomas and is legally not allowed to do my surgery according to Kings which is a laugh as he is listed as an insulinoma expert even on their own website

http://www.kch.nhs.uk/services/critical-care-surgery/endocrine-surgery/

I am just being passed around, I have now been asked to speak to the secretary of a surgeon who specialises in gastric bands ? I am not sure what I’ll do next, can I insist on Dr Schultee doing my operation ? I remember him saying the sucess of insulinoma surgeries depended on the experience of the surgeon ? he assured me by saying he had done hundred’s of such surgeries and that I was in safe hands ?

what could potentially go wrong if operated by a general surgeon ? am I just being over anxious ? Rant Over

Richard, what was your experience at Kings ? I assume you were operated by Dr Schultee ?

Steve, my calcium levels appear normal infact my corrected calcum levels are border line low, they have also done Thyroid Stimilating harmone and Free Thyroxine tests and they appear normal as well, it’s just the growth harmone levels that are very low, normal range should be >6 ug/l and mine is 1.8, I can’t ask the specialists about it as I have just not been able to get past their secretaries? I will call them again on monday and pray I’ll have some luck

Thanks guys
Jane

Sunday, 11th July 2010 at 5:48 am

Rudy,
I had my surgery done by Mr Mirza at the Queen Elizabeth Hospital in Birmingham, England 3 years ago. When asked he had told me he had done 4 insulinoms in the previous 12 months but 100s of other types of operation. No one will operate on you until they find the location of the tumour which, evasive little devil that it is, does take some doing. Contact him; I found him very approachable and put my trust in him. And I’m still fine and enjoying life.
Good luck.
Jane
tatia batz

Sunday, 11th July 2010 at 9:23 am

Rudy,
In my opinion you absolutely need to have you surgery done by a special surgeon who knows the pancreas like the back of their hand. The pancreas is a very cantankerous organ. You never know what will happen. And yes you need to know exactly where the insulinoma is before operating. The better trained surgeon will make all the difference in the world. It could save you from having a whipple procedure done and eliminate the prospect of becoming a diabetic. Please use the best surgeon you possibly can that has much experience with this type of procedure.
Rudy

Sunday, 11th July 2010 at 9:58 am

Thank you Jane & Tatia, they isolated the tumor through CT scan back in March, there is a 13mm leision at the head of tthe pancreas, subsequent MRI scan’s have confirmed the tumor, getting dates for surgery has been my biggest problem, Kings are giving me the run around, I’ve read too that it is essential that an experienced surgeon operates on you, I’ve had no luck explaining this to the secretaries at Kings, who does one get in touch with for problems such as mine in the UK ? could I insist I be operated by a certain doctor ? Thanks for all your advice
Jane

Sunday, 11th July 2010 at 11:14 am

Rudy,
It is crucial that someone with experience operates on you. Maybe that is why they are reluctant to do it at King’s. Maybe it is the funding………………. I know when I went to the QE they were quick and efficent. I did not have a Whipple although they warned me that, depending on what was found, they couldn’t guarantee it. I believe Mr Mirza still is at the QE. The address is: Queen Elizabeth Hospital, Edgbaston, Birmingham, B15 2TH. Phone number 0121 472 1311. I THINK the phone number of the department is: 0121 627 1627. Anyway ask to speak to Mr Mirza’s secretary and explain the situation to her/him. They may be able to tell you how to access him doing the operation if that is what you want. My guess is that you will have to be referred by your GP or the hospital. I was referred by the local hospital because the first thing they said to me when they discovered the insulinoma was that no one there could do it! Good luck.
Heidi

Friday, 16th July 2010 at 12:29 am

Hi Rudy,

I echo the advice of the other posters - you NEED a pancreatic surgery specialist. We had to travel 800 km (500 miles) to get to one, but we ended up with Western Canada’s premier hepato-biliary doctor. Mike also had his tumour on the head and that is the most delicate area to work on and avoid the dreaded Whipple. Our surgeon only worked on tumours of the pancreas, liver and gall bladder, so we were in good hands, however, Mike did have serious post-op complications and ended up in hospital for a total of 7 weeks and a drain in his belly for 4 months. Although we have good general surgeons here in our smaller city - we were told we needed to be in the big city hospital with the best specialist in our province.

In my experience you and your family need to be very strong advocates throughout the experience. I did this for my husband and I fought the system the whole way because insulinoma is too unknown to the general medical world, never mind the general population. We ran into problems getting through the testing process, admission to hospital, coming home and re-admission to hospital due to complications. Most doctors said “oh, I think I’ve heard about that” when confronted with Mike’s insulinoma diagnosis. That is not an inspiring statement, by any means! So keep asking or demanding to get to an experienced surgeon - you need to.

I wish you luck! Heidi
Gill

Saturday, 17th July 2010 at 4:51 am

hi all - Im having a variety of tests for symptoms including hypoglycaemia, dizziness, memory/concentration problems - sometimes I feel as though Ive been mesmerised! starey, spacey and just cant think properly or remember things. I had a 6 hour GTT which had to be abandoned at 4 hours because my hands went blue and I was about to pass out, (but the blood glucose didnt go that low at 3.4) so I have some sort of reactive hypoglycaemia.

Im now thinking this may be insulinoma so rather than just worrying I thought I would ask you folks what you think? Ive had loads of blood tests for almost everything standard and all normal. My other symptoms are burning feet, pain felt in kidney areas and also to right side somewhere. Im overweight because I cant diet as I get so hungry and dizzy but Ive also got a dizziness that seems different to the hypoglycamia dizzy, more vertigo-like and Ive got swollen ankles and a restless leg symptom in one calf. Ive had some strange movement of my neck/head occasionally (for years) and think this is when glucose is low. Im hypothyroid and my BP is raised. Im still working full time so not desperately ill or anything but the memory difficulty is now a real problem. Ive had a head scan and having a synacthen test next week.

I feel that I have been fobbed off by my GP for years when Ive known something has been wrong and at least the endocrinologist is listening but the better informed I am the less they can fob me off! Im really fed up but not a depressive or hypochondriac!

I will really be grateful for your thoughts and wish you all the very best with your own health challenges.
Thanks,
Gill
tatia batz

Saturday, 17th July 2010 at 8:52 pm

I am curious if any of you have tried to get life insurance after being diagnosed with an insulinoma? I just recently tried and was denied due to history of insulinoma. The reason being I need to wait 5-7 yrs before being eligible. It is almost like having a cancer and trying to get life insurance. I am 18 months post insulinoma and am feeling great. My latest scans indicated everything was great. I am at a loss now as to why I would not be eligible for life insurance after having the insulinoma removed. Am I crazy for thinking I should be eligible? If any of you have had a similar experience please share and/or how you went about getting life insurance or not after having the insulinoma removed.
Thanks!
Tatia
Peggy

Sunday, 18th July 2010 at 11:13 pm

Oh my Tatia! I have always been curious about being able to be insured. I no longer have health or life insurance, because we can’t afford it. But I assume I couldn’t get health insurance anyway, if you couldn’t get life insurance… even though I’ve been completely cured over two years ago! This just shows how little they know about insulinomas…still, 18 years since I was originally diagnosed.

Wow Gill, I hope you can find a doctor who will give you the attention you need! I have to say that I have experienced all of your symtoms, except the hypothyroid and high blood pressure. I wouldn’t say that they all, including your low sugar symptoms, couldn’t be a sign of one particular problem…but I would ask which of these issues are the most life altering. I would assume that you’ ve had a urine test to rule out a kidney infection. The dizziness I felt that was different from my hypo dizziness, turned out to be a sinus issue that took quite a while to correct. The burning feet and restless leg (both which have been reduced since I started taking supplements, especially magnesium, cut out dairy and chocolate and drinking more water)) were not related to my insulinoma. But the head and neck jerking, hungry, dizzy, spacey poor memory difficulty thinking thing was all low sugar. The GTT test wouldn’t help, you’d need a 72 hour fast.
If I were you I’d get a glucose monitor and start keeping a diary. If you can, I’d let a better doctor know (I had to go through dozens!) how severe it was and see if they could prescribe some strips so you can test your own blood sugar levels. Be safe! Good luck!
Peggy
Gill

Monday, 19th July 2010 at 2:03 am

Hi Peggy, thanks for replying. The most life altering thing is the memory/concentration problem and the dizziness but also having to eat all the time and therefore cant diet! I am taking my bloods but it never goes that low. I can tell I need to eat and check it and it can be 4.4 - never gone below 4 but these monitors probably dont go that low and I try not to let it get too low. My endo seems thorough and I think he will sort it but I dont see him for a couple of weeks and Im going insane trying to figure it out! Gill x (Im in UK by the way)
Patricia Rose

Monday, 19th July 2010 at 1:17 pm

Hi,

I had an insulinoma removed 16 years ago after suffering hypo’s and anxiety for 15 years before diagnosis.
My question is, has anyone had the operation for insulinoma and still suffer with hypo’s and anxiety? My symptoms started a few months after my op and i have really struggled to get well since.
I am now back under the care of the QE (England) and i had a 72 hour fast in 2009 but an insulinoma was not diagnosed and Dr’s seems to think it is hyperinsulinemia.
Can anyone comment, please!!!

Pat
Pat

Tuesday, 20th July 2010 at 3:59 am

I had an insulinoma removed from the tailend of my pancreas 16 years ago and since then I have had repeated symptoms of hypo’s and anxiety. Has anyone else had any problems since their operations because Iam really fed up now?
Pat
Gill

Tuesday, 20th July 2010 at 1:48 pm

hello Pat - I know from reading the posts here and on Enola Wright’s site that some people have had an insulinoma removed and then were found to have another - this happened to Enola I think.

My understanding is that hyperinsulinaemia is a description - they still have to find the cause - dont be fobbed off.

Gill
Peggy

Wednesday, 21st July 2010 at 12:08 am

Pat,
You continued to have symptoms after your initial surgery?? Seems they may not have removed all the insulinoma(s). Have they done a CT or MRI recently? So sorry you’ve had to go through it for so long.

Gill,
I would go for long periods of time without my sugar getting too low. but after a while it got lower. How long have you suffered with the disease? What happens if you don’t eat when you know you need to? If your’e healthy, your system will kick in to raise your sugar. I would push for that 72 hour test. I understand the weight issue, although doctors told me I was unique in the fact that I never gained as much weight as the average insulinomiac.
Instead of eating meals, I would drink a milk substitute like soy or rice milk, whenever I felt I may be getting low. Usually that would suffice until I could eat a complex carb meal.
I know it’s not the same for everyone. And there’s no easy answers. This IS, definitely, a life altering disease!
Stay persistant.
Gill

Wednesday, 21st July 2010 at 1:06 am

Hi Peggy - my BG is around 5.5 in the morning but then it goes up and down all day and if I dont eat every 2 or 3 hours it drops - the lowest Ive recorded has been 3.3 which was on my way home from work yesterday and I felt it was dropping very low so stopped and tested it. I feel that I am eating all the time in the morning - its usually not so bad in the evenings. I am really scared that the endocrinologist will say its nothing much and manage it by diet - and its making my life a real misery - I would be relieved to find its insulinoma and to have the op if that would stop this. I think I have had this for a number of years but difficult to judge as during that time Ive also developed an underactive thyroid which gave me brain fog too! the memory/brain difficulty is what is really upsetting as Im finding it difficult at work now. It does seem that its got worse over the last 3 months - does this happen quickly sometimes? Has anyone had pain from these ‘omas? Ive got a discomfort in my kidney areas and also somewhere off centre right in my abdomen - nothing on u/s. Gill
Nicolai

Wednesday, 21st July 2010 at 2:16 am

Hi Gill,

You need to have a 72-hour test. That is the only way to diagnose an insulinoma. They should monitor your blood sugar regularly and when it drops to 2.0 - 2.5 (the lower limit varies between hospitals) they need to take tests for glucose, insulin, c-peptid and preferably proinsulin. From these values you can see if it is an insulinoma. If your blood sugar does not drop that low during 72 hours it is highly unlikely that it is an insulinoma.
When they take all the blood test at the end of a 72-hour test the glucose should be measured by drawing blood (called a plasma glucose test) and not using a normal diabetes monitor (as you mentioned yourself these are not accurate when it comes to very low values).

Hope you are able to get some good doctors to help you.
Gill

Wednesday, 21st July 2010 at 12:53 pm

Hi Nicolai, thanks for your reply and help. I will see what the endocrinologist has to say in a couple of weeks. on the GTT it was 3.2 and they stopped it after 4 hours because of my symptoms - blue hands, brain not working properly and nearly passing out - they will have done this as a serum level now and did take cpeptide at the lowest point, not sure if they did insulin or anything else as well as I really wasnt ‘with it’. Wouldnt this tell them anything without me having to have the 72 hour fast? I cant find out the difference between a reactive hypoglycaemia and insulinoma - if anyone has any other sites or resources to recommend Id be grateful.
thanks,
Gill
Sue

Thursday, 22nd July 2010 at 1:24 pm

Hi Gill,

I am kind of in the same boat. I have hypoglycemia, mostly in the mornings, that makes me eat every 1 1/2 to 2 hours. My lowest readings have been in the lower 40s.

I went through the 72-hour fast, but did not go below 62. I have since read that a rare percentage of insulinoma patients do not go low fasting , but do react to glucose intake. When I had my GTT, we had to stop at 3 1/2 hours, as i was having all of my adrenaline symptoms. At 3 hours my glucose had been at 52, so i presume I was in the 40s by symptom-time. They did not take any more labs(small town lab).

The article I am referencing talks about the normal 72-hour fast, but dropping with glucose. You can type it into your search engine and find it:

Insulinomas May Present with Normoglycemia after Prolonged Fasting but Glucose-Stimulated Hypoglycemia

It is in the Journal of Clinical Endocrinology, vol. 91, 2006
Gill

Friday, 23rd July 2010 at 1:37 am

Hi Sue - thanks for that, Ive had a look and its interesting. Im hopeful that the endocrinologist will get to the bottom of this, he seems very thorough but part of the difficulty seems to be getting them to think about this as a possible diagnosis as its rare. Im really fed up because I went through this same sort of situation a few years ago getting the doctor to realise that I did have an underactive thyroid, despite my bloods being ‘normal’! Id just like something straightforward and easy to diagnose - if I have to have something of course!

Someone brought kiddy sweets into work a couple of days ago and I had some - I felt so much better although my bloods werent very low so Ive been eating them in the mornings - didnt stop the main dip I get at lunchtime but did clear my head - anyone else had this? My memory is still poor - how bad can memory get and still get better after surgery? I am thinking that my brain has been damaged by this as I cant see how it will get better - the foggy brain cleared with the sweets but not the poor memory - any thoughts anyone?
Gill
Richard Vivash

Friday, 23rd July 2010 at 12:24 pm

Hi Rudy,
Apologies for not getting back sooner.
Klaus-Martin Schulte is an endocrine surgeon and has vast experience in removing Insulinomas. Everything that he said would happen to me biologically post op has happened. I would trust my life to this surgeon (in fact I did). The care at Kings College was excellent (the food wasn’t great tho) and the nurses were full of positive attitude as well as being friendly and attentive.
Rudy

Saturday, 24th July 2010 at 4:03 am

Hi,

I’d been to Kings yesterday to meet the new surgeon, it turns out that he is a general surgeon and not an endochrine surgeon, the first thing he said was he was going to do a whipples if he could’nt spot the tumor. He said it was a high risk major operation with chances of complications, he said he had done hundreds of whipples, I felt he was inclined to doing this procedure.

This is stark contrast to when I met Dr Schultee who ruled out Whipples straight away, he said they could see the tumor and said I’d only go through what he called a minor op, he said whipple’s would only be done in very bad cases where the tumor was not accessible and my case did’nt warrant a whipple’s.

I am just hoping for a divine intervention now, I really want to be operated by Dr Schultee but could’nt gather courage to tell the new surgeon that, I am going to speak to PALS on monday to see if I have got any options. Just hope for me please

Thanks :-(
Gill

Saturday, 24th July 2010 at 4:24 am

Hi Rudy - I presume you are in the UK. The new government have said that they are bringing in choice of consultant led team - which will mean you can choose the consultant you are under - this doesnt necessarily mean the consultant personally of course. they have also said “no decision about me without me” relating to NHS care.

Pals is a good place to start but I think you can say that you want to be operated on by Dr S - and this is what you should do. Dont accept a whipple as anything but a last resort - like you I dont like how he is talking. We do have to remember that sometimes surgeons have procedures that they like doing - easy when you dont have to live with the consequences!
be strong and stand up for what you want.
i work in the NHS and if you want to contact me offline that would be ok but I dont know how to do that!
best of luck
Gill
tatia batz

Saturday, 24th July 2010 at 8:04 am

Rudy,
You have the right and the choice to decide who operates on you. A Whipple is a much more extensive surgery and seems unneccesary in your case. I too looked at a great Dr at John Hopkins who was known for the Whipple and done more Whipple procedures than anyone in the U.S. My husband said no because it sounds like he really likes to do this procedure not always the procedure that is needed. He is a great doctor but I did not need the whipple. For a surgeon to go in and operate on someone without knowing where to go in this day in age is not good. If the other surgeon found the insulinoma and you preferred him by all means use him. The Whipple is much more complicated and I believe will make you a Type I diabetic.
This is your life and your body and you have to be totally comfortable with who you choose to operate on it. I know you are beaten down right now but you need to continue to be strong for a little longer and then this whole mess will be over with and you will have your life back, new and improved! Hang in there, will be thinking of you and waiting to here what happens.
Tatia
Heidi

Sunday, 25th July 2010 at 8:54 pm

Rudy:

Tatia and Gil are very right. Whipple is the worst case scenario and will make you a permanent Type 1 diabetic as the pancreas would be removed entirely. It may be ‘comforting’ to know a surgeon has done many of them, but that really shouldn’t be the measurement of success in this case. You want a surgeon who has done insulinoma surgery and looks for the most conservative approach in his plan. Tumours on the tail of the pancreas often can be removed with a laproscopic procedure. If it is located higher up or on the head (where the pancreas connects with the duodenum) the procedure is much more likely to be an open one. However, our surgeon advised us that he aimed to avoid the dreaded whipple at all costs because of the side effects and complications. He was a liver, gall bladder, and pancreas tumour specialist and only worked on those problems, so I respect his opinion.

Since your tumour appears to be on the head, the deciding factor is how close it is to the pancreatic duct. Mike’s was on the head, about the same size as yours and just a hair width away from the duct, but his didn’t end being a whipple (although we were told it was always a possibility if things didn’t go well), so do discuss your concerns with the surgeon.

Best wishes!

Heidi
Tina

Friday, 30th July 2010 at 1:17 am

Hi - just a quick comment here - as my english is not perfect - I am danish and can understand all you write - but my written english lacks a bit in all the medical terms. But I can’t sit still and read that Heidi and Tatia says that a full Whipple operation means that you become a type 1 diabetic. This is not true. I had a whipple operation january 2009 and even though my tumor was in the head of the pancreas the only removed about 1/3 of my pancreas - and attached the remaining part to my small intestine (is this the right word???). And my bloodsugar levels are perfect now and I am not a diabetic. Lots of other complications that I shall not mention here - but I just wanted to say that if you get the Whipple done by a competent surgeon, you may still keep some of you pancreas.

I had a open surgery done in april 2008 whtich removed only the tumor - but 3 months later it was back - therefore the Whipple last year. So if I had known then what I know now I would have preffered the Whipple at the first time.

Best of luck to all of you who still have the operations ahead - and believe me: despite all the complications I have had - and still have - its worth it.

Tina
Heidi

Sunday, 1st August 2010 at 11:52 am

Hi Tina,

Our pancreatic surgeon told us that a full Whipple included the pancreas, gall bladder and spleen and caused instant diabetes. So maybe the terminology used is a bit different around the world. To my mind, your operation would be classified as a partial because you were able to retain pancreatic function with that procedure. I would say that you had a very good surgeon if he was able to remove the head and re-attach the remainder to your intestine (duodenum). Never the less, these are hard surgeries to be subjected to and retaining pancreatic function is the mark of success.

I am curious what your post surgery complications are as you mention you continue to deal with some.

Although my husband Mike has no remaining problems that we know of, now that he has had this ‘little’ problem, our medical people continue to treat him with care. He has recently undergone a series of eye exams because of his insulinoma. The practitioner wanted confirmation that there was no lasting damage to his retinas with this condition. (there wasn’t) Our GP has referred him for another upper GI scope and a colonoscopy to rule out anything and develop a ‘baseline’. Of course Mike is now 51 and at that age where men start to have health problems, so they are being proactive since they have him in their grasp now. This for a man who hadn’t seen the GP for 7 years before his collapse. He feels like an rat in an experimental lab now. I keep telling him that being ‘interesting’ brings attention. But better a bit too much than none at all.

Heidi
Neil

Monday, 2nd August 2010 at 7:02 am

Hi all,
Heidi is quite correct with the Whipple procedure only the Pancreatic head the Bile Duct the Gallbladder and the Duodenum are removed, in some cases a portion of the stomach may also be resected. The Duodenum is resected because it shares a blood supply with the head of the Pancreas.
The Pancreas and Hepatic Duct are attched to the Jejunum to allow flow of Panceatic secreations and bile to flow into the digestive system. If part of the Stomach is removed it too is attached to the Jejunum. Patients who are not Diabetic before the procedure are not normally Diabetic post procedure. I have seen this done on many occasions although still a major operation with a significant risk of complications, it no longer has the high morbidity rate once associated with this procedure, especially in non-malignant tumours.But as ever choose your surgeon wisely my friends.
Neil.
Tina

Monday, 2nd August 2010 at 8:01 am

Hi Heidi

You may be right - maybe I was lucky and only had a partial Whipple. They removed “only” the head of the pancreas, gallbladder, duodenum and about half of my stomach. My bile duct is now attached to my intestine like my stomach and pancreas are. And there’s where the still ongoing complications kick in. I’ve always had a problem with scar tissue (is this the correct term for when you get ugly big scars whenever operated on?) and I now have the same problem where my bile duct is attached til my intestine - is closes because of scar tissue. I started only 4 month after my Whipple having gallstone attacks and they got more and more often. 10 months after the operation I got jaundice because my bile duct was completely blocked with scar tissue - nad I had to have several operations to fix this 1. one the day before x-mas 2009. And already in april 2010 I started having these attacks again. New operation this may - which did not succeed - so they will try again next week. The procedure is in Denmark reffered to as a PTC - I dont know the english term.

But this is the only ongoing complications - all the other was primarily in the first 2 months after the Whipple - while I was still in hospital.

I am 41 years old - and the hospital keeps referring to me as “young” - so maybe this is why I have haf absolutely no special exams unless I have taken the initiative myself. So maybe Mike should consider himself lucky that your doctors are so proactive.

Tina
Heidi

Monday, 2nd August 2010 at 11:26 am

Hi Tina,

That doesn’t sound like it has been much fun. Some people are prone to developing scar tissue after surgery - I know as I am very good at it. I have had many problems with my reproductive system and every surgery - small or big has had serious scar tissue developing afterward, which made things worse. I just had my ovaries removed last March as the left one was attached to my Colon with scar tissue along with big cysts. The pain is not imaginable and i am very relieved right now. While my surgeon said he got everything out, he expects it may redevelop over time. He told me it is common in some people to form a lot of scar tissue after every surgery.

It sounds to me you have enough problems with the bile duct and are very glad your pancreas is still functioning! It seems to me that everyone who has an insulinoma has a slightly different experience, but it is rarely easy and often life-changing even when everything goes well.

Heidi
Heidi

Wednesday, 22nd September 2010 at 12:27 am

Hi Everyone,

Just thought I would update news on Mike. In late August he had a check-up with a Gastro-Enterologist here in town and they wanted to do a colonoscopy and an endoscopic ultrasound since he was over 50 and had a bit of a history - that little insulinoma thing, last year. You know, the baseline thing. Well, much to everyone’s happiness, the EUS confirmed that his pancreas and the rest of his upper GI tract is 100% OK! As well, the colonoscopy was clear. So he is cured, no more excuses or questions, CURED! I almost think this surgeon just wanted a chance to have a look at a pancreas after this rare type of surgery - although he said he was just feeling he needed to check that all was well.

Hope everyone is doing ok and making progress in their own cases - haven’t seen any postings in a while.

Heidi
Rudy

Thursday, 28th October 2010 at 2:13 am

I was operated on the 18th of August, the insulinoma unfortunately was not on the surface of the pancreas, it was about 8mm below the surface and close to all the vital ducts. The surgeon Dr Amit Patel attempted a laproscopic procedure but had to do a Whipples eventually. I was on the operating table for 12 hours, I remember being in a happy dream and then suddenly all of a sudden woosh they revived me, I felt so much pain, I screamed my gut out. I heard the doctors say the pain killers will take a couple of mins to kick in and that I had a low pain threshold, the pain did subside eventually and they put me in the high dependency ward, I was on a High dosage of painkillers administered via an epirdural. I just could not keep my eyes open and slept the first three days post op, I had drains both sides of the stomach, a catheter, another pipe going into my stomach through my nostrils to drain the fluids from my stomach, a pipe out of my neck, epidural sticking out of my back, I was quite a sight :-) the physiotherapist adviced it was important that I started moving about quickly else my lungs might catch an infection, he also thought me a couple of breathing excercies to keep my lungs active, but I was so sleepy I just could’nt do any of them, sure enough I had high fever a few days after the op, they put me on antibiotics at one time I was on paracetamol, tramadol, morphine through epidural + antibiotics + IV fluids, I felt very drained. They moved me to a general ward 4 days after the OP and they kept monitoring me,I started taking fluids orally a week after the op, they gave me fruit juices and some energy drinks, I had no appetite for anything at all, I would finish a small bottle of juice in three sittings, they removed all the tubes and drains in the second week but I developed a leak in one part of the surgical wound, I have a 20cm scar just below my chest btw, they swabbed it and said it was not an infection and thought it was some residual liquid coming out through the nearest available opening as they’d remvoed the drains, I was in the hospital for more than two weeks, I must say I recieved excellent care, Kings college hospital has excellent infection control measures, they change glove, aprons everytime they meet u, take blood samples on a daily basis to check for infection and any other unusual activity, they have an excellent food menu with a lot of choices, they even arranged an ambulance to take me back to Brighton. I was seen by the district nurses for two weeks post op, the leaks did’nt stop, I had blisters etc they took even more swabs, but the results were negative for infection, the leaks eventually stopped, it’s two and half months now post op and I’ve only just started work, it’s been a long recovery, I still can’t sit up for long, so the train journey from Brighton to London is a challenge, I still have some vague symptoms, like headaches, stomach aches etc, the doctors have said it’ll settle over time, I can’t say my life’s changed dramatically post op, I feel a bit depressed, my GP said this was normal following a major op, he said recovery following whipples might be as long as 6 months. I hoping the situtation improves over time and I’ll be back to my best. The result of the biopsy said “All features suggest a benign pancreatic NET (M1B1 not yet available, does anyone know what this is ??). I have been passed back to the Brighton Hospital for a long term followup, but I’ve not had an appointment with them yet ? For people who’ve gone through Whipples, do you have repeat scans every year, what happens here on ?

I thank everyone for their help and support, it’s been a difficult last few months, but I am glad the tumor’s out now :-)
Kim

Thursday, 28th October 2010 at 5:51 am

Rudy, it has been pretty quiet on this site and then comes you! :)

That was quite a procedure you went through but it sounds like, all things considered, you have come through it about as well as one could. Keep getting better!

I believe NET is a neuroendocrine tumor. Don’t know about M1B1. When I Google it I get proximity sensors, flame retardant fabric and a lot of complex math equations!

Best of luck to you! Take care.

Kim
Nicolai

Monday, 1st November 2010 at 4:25 am

Hi Rudy,

That sounds like quite an ordeal you have been through. I hope your recovery continues to go well.

I have not had surgery yet, primarily because it involves a large risk of ending up with a Whipples as well. I am still not sure what to do, and would really like to talk to you about this. Could you perhaps write to me? My email is nicolaiprl@gmail.com.

The best of luck to you!

Nicolai
Cortni

Saturday, 6th November 2010 at 6:58 pm

I am 25yrs old and for the last 2 years have been very sick with pancreas problems. I have seen 4 endocriologist amoung 4 other different kinds of drs. I have even been to the may clinic and come home with no results. over the last two yeas i have had very low blood sugar running in the 40 and pretty much feeling horrible all the time. i had an ercp done before i went to mayo. so when i was up there they were only able to get my bs to drop to 59 after the 5 1/2 hr food test that i had done a month before and it dropped to 39 with high insulin levels. I have ran ever test there is to run and seen ever dr. there is to be seen and i still feel horrible. does anyone have any advice. i just finished having surgery and ercp for sluge in the gallbladder. they said it should make me feel better, but as for my pancreas they will have to wait for a spot to show up on a scan or until my bs go low again. Advice anyone Please!!
Cortni

Saturday, 6th November 2010 at 7:17 pm

need help with a problem with my pancreas. i have seen 4 endocriologist one at mayo also with no luck. i am 25 and feel horrible all the time. i have just had and ercp which i am recovering from now. they can’t diagnose my problem. i used to have bs lows into the 30 and 40 im no only going into the 50 but i still feel horrible.
Jeff

Friday, 12th November 2010 at 7:54 am

I’ve had similar experiences to many of the people on this page and am currently in the process of confirming whether I have an insulinoma. I just had an octreotide scan over the last two days and my endoscopic ultrasound is coming up soon. The surgeon I have been meeting with is already convinced that he will find the tumor. I plan to come back here and share my whole experience with everyone, since this page has been the most comforting and informative place on the internet when it comes to insulinomas.

Right now, I was curious if anyone could give me an idea of what sort of bill I will be racking up. Would anyone be willing to share how much their surgery actually cost them?
Anna

Tuesday, 16th November 2010 at 3:31 am

Hi everyone
I have been in and out of hospitals for the past 2 years. They haven`t been able to work out what the problem has been.
Looking back now - all the symptoms fits hypoglecemic.
6 months ago I was diagnosed with reactive hypoglycemic.
Fasting c- peptide of 2000 pmol
and insulin level of 170 pmol
However fasting blood sugar 4 mmoL/L. During the OGTT the blood sugar raised to 6.7 mmol/l - ( 3 hours into the test) c-Peptide app. 5000 pmol and insulin level around 600 pmol. On the 4 th hour the blood sugar dropped to 2.3 and c- peptide remained at 2700 pmol with an insulin level of 188 pmol. On the 5 th hour the figures never really changed.
This test led to the 72 hour fasting test which for some reason have given some confusing results.

My BG is never recorded lower than 3 mmol/L , however the insulin level stays during the 72 hour fast on average around 100 pmol with fluctuation beween 70 - 125 pmol. At the same time C- peptide stays on average on 1400 pmol with fluctuations between 800 - 1800 pmol.
The proinsulin is on average 10- 15.
My endocrinologist has now scheduled for an Ultrasound as well as a possible PET- scan with the view to find an insulinoma. He is convinced that I hyperinsulimic but at the same time cannot work out why the BG never falls more and therefore in doubt whether it is an insulinoma
So my question to you, has anyone experienced the same where the BG does´t go lower during a 72 hour fast ( however symptoms of hypoglecemic ) and at the same time with elevated insuline and c-peptide levels and yet been diagosed with an insulinoma?

Best wishes to you all

Anna

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Insulinoma & Whipple triad - Surgery (update)

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