Insulinoma & Whipple triad - Surgery (update)
Published by Jon Mikel Iñarritu January 15th, 2006 in Fast Facts, Medical Images Tags: .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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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.
I wish you luck with the surgery. I think that everything is going to be o.k.
Get well,
Dr. Jon Mikel Iñarritu-Castro
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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.
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
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! :)
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.
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
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.
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:
Familial persistent hyperinsulinemic hypoglycemia
Primary islet-cell hyperplasia (nesidioblastosis)
Non-insulinoma pancreatogenous hypoglycemia (which only produce postprandial hypoglycemia).
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.
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
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!!
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.
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
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
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.
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
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
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
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.
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
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
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
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!
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!!
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.
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
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!!!
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.