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 smaller than 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 (“blindâ€) 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.
Jordana, welcome! I would love to hear your husband’s story, like how long he’s had hypos and what his numbers were during testing. And, definitely keep us posted on what you find out at your appt. at Mayo next week!
As far as Mayo, are you going to the one in Rochester? They have the better endos that deal with this(as opposed to the Mayo in Jacksonville or Scottsdale). I am not familiar with the CC, but maybe someone will chime in.
Hi Everyone,
My husband has just been diagnosed with hypoglycemia with blood results “consistent” with an insulinoma. We live in Nebraska and are going to head to Mayo clinic this week. After reading this blog however, I’m wondering if we would be better off at Johns Hopkins?
Any advice would be much appreciated.
Hi everyone
My name is Yvonne and I am currently undergoing tests for insulinoma. I had a fasting blood test and my blood sugar was 2.6 when they tested my blood 2 hours after drinking the sugary drink. I am very new to all this as I was only told 3 weeks ago by my GP that she suspected I had insulinoma. From all the comments I think my GP must be really clued up as it appears many of the people on here have not been diagnosed for a long time. I have been very moved by the comments made and stories shared. To date they have done a test for adrenal disease and an ultra sound the ultra sound did not show anything up. I start 3 days of fasting but my consultant is doing 3 days of me fasting for 16 hours then taking blood samples he has not mentioned a 72 hour fast as yet has anyone else had the same tests i am having. Any information would help me a great deal at this time.
Hope you are all doing well and all the best to everyone
Yvonne
Christine, I forgot to add that I had an oral glucose tolerance test about 6 years ago, and that time the last measurement was glucose 55, insulin 35. No doctor really comments on why I have a raised insulin with the hypo level.
Christine, hi! I don’t know how far Scottsdale is from you, but there is the Mayo Clinic there. The main Mayo is in Minnesota, and they are the “go to” place for people with insulinomas, so I was thinking maybe their satellite clinic in Scottsdale might be a good place to be seen by an endo. They usually can get you in in a few weeks.
I have been having “lows” for about 20 years. I didn’t realize they were hypoglycemia all that time, as the doctor told me I had anxiety. I just learned over the years that eating helped. Finally, 3 years ago I bought a glucose meter and tested when I felt anxious and shaky, and my glucose was in the 50s!! I have been seeing various endos, but because I didn’t drop during my 72-hour fasting, they kind of dismissed it. I usually drop AFTER eating–sometimes I’ve gone into the 40s.
I finally travelled to the Mayo Clinic in Jacksonville, FL, to see if an endo can help. I had my first appt., but have to go back in a week to do the mixed meal test. I BETTER drop after that meal, or I won’t get any validation for the hypos I now have on a daily basis if I don’t eat every 1 – 1 1/2 hours.
Please keep us updated! I know what you mean about getting stressed and dropping. I eat automatically if I get stressed to prevent the low. I definitely don’t eat because I am hungry!
Hey everyone!
So, I’m a little freaked out about all of this!! I have not been officially diagnosed, but all of my blood work points to insulinoma. I am only waiting on the visual diagnostics to confirm. This all started when I was a sophomore in high school, I had had a 24 hour stomach flu so I had gone a long time with out eating and passed out in a public bathroom, being a child I ignored it, an old lady got me conscious and I woke up like nothing happened! Then I became anorexic. I never had any symptoms until my senior year while I was doing my nails I passed out, had a seizure, and was basically paralysed, I couldn’t move any of my extremities, I wasn’t coherent, and was beginning to lose concaious again when the paramedics got there. My blood sugar was 48 and I only weighed 90lbs at 5’3″ the paramedics administered glucose. I went to the drs the next day and she said bc of my weight and anorexia I was hypoglycemic nothing more. She said that if I gained weight I would stop having attacks! She refused to realize that it was the pain stimulus from the nail buffer that sent me into an attack. For years I had minor episodes, shakes dizziness, and so forth when I was stressed but I would eat and feel better! Now I way 125 and I am in the perfect weight area!! However this past winter my attacks increases drastically. I had finals, I was planning my wedding, dealing with my in-laws, and family drama and I was stressed out a lot! Plus, my husband was gone in mos school and I had to do my first gyno appt. I had to attacks that almost led to me passing out, luckily both times I was with my mom who got me sugar! I went to the drs again and he ran a lot of blood work with me fasting for 12 hrs and my glucose was 64…I then got married and moved to Yuma, Az. When we flew home to pack and move I had an anxiety attack when the plane was landing and it was turbulent…I had eaten about an hour before but my blood sugar dropped and I started tanking again! Luckily, a woman had candy that kept me conscious till we landed and my husband got real food! I refused to go to the er. I saw my dr one more time before returning home to Yuma, and we did a non fasting blood test, I had eaten a hour before. I have a fear of needles and so I was stressing a lot. My glucose level was 63, insulin level was 21 and my c-peptides were 6.1…that is when he told me he believed I had insulinoma. Now here in Yuma, I have seen an internist who believes I have insulinoma and I have been on a 4 month waiting list to see an endo, she isn’t taking me seriously but she is one of 2 here and the other endo was a 5 month wait…I’m terrified. Walking around a mall with my husband dropped my blood sugar to 60, very rarely is my blood sugar over 90. I luck out bc I get nausea a lot especially when my levels drop so I haven’t had a serious attack since January. But I’m trying to find an experienced surgeon nearby, and move on base bc my husband is gone 48-72 hrs so I’m alone and about 20 mins away from base. I just want this over with, but the surgery scares me too. I sometimes live in denial and hope that someone is going to say I dont have insulinoma I am fine!!!
I just want to point out to any new visitors, with the new format of this page, you have to scroll all the way down to the bottom to create a post. To make it easier, put your cursor over the scroll bar >to the right over there, right-click, then click on the option “bottom” and you’ll get there easier.
Hi Mary! I am so glad this forum got back up, Mikel. Thanks!
Mary, if the CT scan didn’t see anything, the next imaging option would be an EUS, or endoscopic ultrasound. They would put your husband in a light sleep and slip a tube with an ultrasound thing down into his stomach so they could look at the pancreas closer. There is more they can do, but some doctors just kind of “stop”. You may have to look for another doctor that has experience with insulinomas. Can you tell me a little about what he’s been going through? Did they do a 72-hour fast?
My husband has been diagnosed with insulinoma- and it is excreting insulin involutary at an alarming rate. However, it is not being picked up on a CT scan. The endocrinologist says there is not much that can be done. My husband is getting more and more sick. His sugar drops to 3, whilse his insulin level is 24. Any assistance is appreaciated. Please advise – South Africa
Comments are working again. I’m sorry for the inconvenience.
Since we have more than 1,690 comments in this single post, I have to arrange them by pages and the last comment will appear at the top, is that easy-reading for you guys? I’m looking for a plug-in to display comments at your will.
Best of all,
Jon Mikel
Just testing. I hate to know that all the posts were lost off of this site! It was valuable information and a big help to alot of people!
Vanessa, I think most people that get really low sugars after an overnight fast sometimes talk their doctor into an overnight hospital stay to put the glucose drip in. I had an EUS along with an upper endoscopy. It is a breeze. They knock you out and then you come to. I had a very slight feeling in my lower chest that i could tell where maybe they spent more time or something, but it went away by the next day. I’m never hungry, but was able to eat.
Vanessa – my EUS to get a visual of the insulinoma was my first experience with one and I was also very nervous. However, it was not bad at all. Because of the fasting before, my blood sugar was below 30 when they checked, so I had to be on a glucose drip, but when I woke up, I didn’t remember anything. I did get a little sick from the anastesia, but no sore throat or any other problems and was ready to eat on the way home. I may have been there 2 hours, but the procedure was only about an hour.
Also, I never had any restrictions on driving. After my surgery was scheduled, I did question my endo about waiting and she said that if I refused drug therapy I would have to sign a contract with her that I wouldn’t drive if I was having symptoms. However, I decided to go on with the surgery and am very glad I made that choice. Good luck to you!
Hi, I was diagnosed last July with an insulinoma and referred to Hammersmith Hospital. I had a galium PET scan in December which showed it was just the one tumour. I am having an EUS on Monday as the surgeon is concerned about the proximity to the duct of my tumour. I am very fearful of the whole experience – mainly due to having to fast. I am to get to hospital for 8am and be put on a glucose drip for an afternoon procedure. I am also very concerned about making the 18 mile trip across London to get there in time. I would be grateful if anyone could tell me of their EUS procedures for some reassurance. Were you sick afterwards, have a sore throat etc? How long did it take? Are you able to eat afterwards or don’t you feel like it? I am very grateful for all Hammersmith are doing, but just wish I knew at the time of initial diagnosis there were many other hurdles to get over. It seems such a long process. I also didn’t realise once diagnosed you are not able to drive. I had been driving since July until a few weeks ago when the endocrinologist told me I was basically uninsurable. Any good luck to everyone with their journeys to a healthier life!
I just wanted to respond because I had surgery to remove an insulinoma 12/28/11 and leading up to this was quite frustrating.
In 2009, I got divorced after an 8 year marriage which was the source of a lot of stress. When I began having trouble waking up and feeling disoriented in the mornings starting Spring of 2010, I just didn’t think that much about it.
At the end of July 2010, I moved which was another stressful event, as moves are, and had one morning that I was scheduled to meet my new landlord to sign my lease and then attend a graduation. I didn’t wake up until 11 (had arranged to meet him at 10) and it took me awhile to get going. When I realized I was late, somehow I managed to get dressed and to him and then to the graduation right as it ended. Then it was time to start moving. The move began that day, and then the following day was busy. Fortunately my neighbors insisted I spend that night in their guest room since I was between places. The next morning, I woke up in an ambulance. My neighbors heard my alarm going off and knew I wasn’t waking to it. She came in an said my name and looked closer and observed that this was not a case of not just oversleeping. I was taken to an Urgent Care center and my blood sugar was 13.
After that, I followed up with my PCP who told me I just needed to make sure I eat every couple of hours. For over a year I did this and had at least 10 episodes of not waking up on my own, plus quite a few instances of blurry vision after working out or running.
Long build up to get to my point, however, I did finally make it to an endo who ran appropriate tests and identified the tumor within a month. My surgeon was wonderful, the tumor was very close to the duct in my pancreas and he was able to robotically remove it without any pancreas removal.
Surgery was on 12/28 and I was out of the hospital 12/30. A week later, I feel like I could go for a run!
It was hard to find information on insulinomas or what surgery would be like for me, so I wanted to add my story here for anyone else who may be searching.
I learned PCP’s do not know near as much as they want you to think they do. Go to a specialist whenever possible and stay out of the hospital as much as possible.
Any people still checking in?
Kim, I just realized your surgery was today! Please let us know how you are when you feel up to it. Hope everything went as well as it could!
So here is my story, I am a 25 yr old female I have been recently diagnosed with an insulinoma for years I had hypoglycemic episodes and my PCM (military dr) chalked it up to hypoglycemia it was until I had a very unusual drop a few months back when they decided to do more testing, I had just ate a personal pan pizza within about twenty minutes my heart was beating outta control, cold sweats kicked in I checked my sugars and they were only 80 then I continued to check every 15 minutes while injestion protein in various forms fast sugars carbs and so on my sugar continued to drop at a steady rate till I hit 35 ( which isn’t uncommon for me ) I started having numbness alon the right side of my body final went to the er when I could beat this episode at first the thought I was Havig a stroke I was injected with dex 50 and was on a fast drip of surgar water it took over 11 hours to bring me to normal from the start of the episode to the hospital, they started the 72 hour fast the next morning by that evening I dropped and they were able to do the blood work needed then gave me the injection of glucagon instantly started vomiting the highest my sugar got was 60. The labs came back with an usual high insulin level.. I had a cat scan MRI and endoscopic ultrasound and the results were inconclusive they only thing I got from them was my pancreas was in bad shape like I was an alcholic (i don’t drink) then finally I did the calstem test (arterial stimulation ) and they localized the tumors in the head and neck of the pancreas. Due to being a military spouse I have somethings that are stopping from having the whippel which is what I need, I started doing octreotide injections three time a day the dose is taking awhile to even out and it’s giving me massive diarrea common side effect but really irritating when you have a 3 and 5 year old and a full time job. I have read many articles about obesity and the insulinoma, I am underweight I am 5 7 and only weigh 119. The weight is coming off me like so fast and we can’t figure out why!! I know I am in. The military system but I have an amazing Endo dr. I am looking to see what other options I have since I have to pro long my whippel procedure until I get my husband back home any support is welcomed I could use all the advise and opinions as I can get …. My mother died and the young age of 35 from complications to diabetesI can’t do that to my children I look forward to anything thank u for your time
I know I’ve been hanging out here for a few years and still no diagnosis related to my hypos. But, y’all are the only place I can get help and info related to severe hypoglycemia!
I had my EUS and they didn’t find anything back in September. The problem is, for all these years of hypos, I would get adrenergic symptoms as my warning that I was going low. In the last six months, I find I get very solemn at first, without realizing that I am. Then all the sudden, I feel lightheaded. Now, I’ve noticed my vision gets VERY odd, kind of like blurry and bright at the same time. I get very focused on getting glucose, as I feel like I might pass out if I don’t hurry. Then the shaking sets in and I’m dropping things as I try to open this or that.
Can someone explain why my symptoms are changing from adrenergic to neuroglycopenic? Did anyone have experience with this happening?
I recently went through the 72 hour fast..although I only made it about 24 hours before my levels dropped to 42. After the test they performed an MRI of my pancreas and found a 2 cm tumor on the head of my pancreas. I am scheduled for surgery on Jan. 5 and scared to death. The surgeon says he has only done two of these surgeries but he is performing it with a partner. I am sick to my stomach about the whole thing. He says he has to do an open surgery because he does not feel the laproscopic would work. He also said he does not think I will need the whipple because it is not on the duct..close but not on. About how long is the recovery time for this type of surgery and about how long is the hospital stay?
Hi Jack
A few months after I had my Whipple in 2009 I also lost a lot of hair. Luckily I have a lot of long, curly hair so nobody but me and my hairdresser noticed. After about a month it stoppet and my hair began to grow back out. Strangely enought the new hair is straight unlike my otherwise curly hair. But never mind that….
So this is just to tell you not to worry, this is not unusual after big operations or long time of illness.
Tina
Just checking in with post whipple stuff:
Abdominal pains/spasms have decreased in intensity and duration – I’d say around eight or nine weeks after the surgery they got noticeably better. I still get them occasionally but they are much more manageable.
What I’ve noticed lately, though, over the past three weeks (I’m currently just short of three months out of surgery) is that my hair is falling out dramatically. They say this happens in a percentage of patients and that it should stop before four months and that it grows back. I checked some other blogs and read some anecdotal evidence to match that…
jack
April, thanks so much for letting me know about your A1c. I have told my last endo if 4.5 was low(via email) and she never responded about the low A1c. Not one comment on it. I am seeing a new endo this coming week, so hope to have this all looked at with fresh eyes.
I have NO idea how I’d get throught the 4 hours of lying still! I cannot lay flat on my back even, I have to lay on my side. I feel like my blood is cut off in my abdomen if I lay on my back without being propped up somehow.
Sue,
My A1c was 4.9 prior to surgery and this was considered a red flag to my doctors. I had two endooscopics that did show something but nobody could say for sure that it was a tumor. During the 72 hour fast my sugar started dropping fast at about 12 hours or so. I would consider 62 low but mine would have gone a lot lower than that. I ended up having to have a calcium stim. test to verify the presence of a tumor. I was at Mayo also. It is a very involved test and not much fun afterwards as they make you lay still for four hours.
Nicolai, I did do one 72-hour fast and made it through without going lower than 62. However, I have read in a Mayo article that roughly 5% of their insulinoma patients over a 30-year period passed the 72-hour fast and were responsive to glucose only. I feel I fit into that category.
I agree with Nicolai, has anyone out there who has been diagnosed with an insulinoma made it thru a 72 hour fast and not gone too low?
Hi Sue.
I went through all the various scans, and although they actually saw a tumour during my first EUS, this actually proved to be wrong. The tumour was in a completely different location than what they thought. In total I’ve had 2 EUS, 4 CTs, 3 MRIs, 1 Octreotide, 1 Calcium stimulation and 1 angiography. The angiography, which was done after many other scans, eventually showed the tumour – and once they knew where to look it was actually visible on all the old scans! I put my a descriptions of all the scans on my site (www.insulinomas.com).
However, I still believe that the diagnosis should be gained by blood work, specifically the 72h fasting test. Even if you have an insulinoma you might be able to go through many scans without the doctors actually finding anything. On the other hand, a 72h test can definitively establish the diagnosis of an insulinoma, and then the doctors can try all the various scans to find it as step two.
I can’t remember if you already had a 72h test?
I hope you are able to find some answers soon. Best of luck!
Nicolai
Wheeww! Thanks Robin for your story! I was feeling a little “thrown to the curb” by my doctors.
An A1C is a test usually done on diabetics, and it shows their average glucose level for the last 3 months. It is measured on the hemoglobin somehow. According to my 4.5 level, my average glucose is 75(?)ish. So, for everytime that I eat and might rise 30-40 points, I have at some time also dipped 30-40 points from that 75. I really feel I dip while I sleep, along with after meals if I don’t eat often.
I honestly feel a calcium stim. test is what I need to definitively show it or not. I either have a single insulinoma, or my pancreas just has too many insulin-producing cells. Either way, it needs to be addressed.
Hi Sue,
You came to the right place because I am one that unfortunately went thru numerous EUS procedures (3 I think) and none of them ever detected anything. Even onve I went to the Mayo Clinic the doctor there didn’t see it. I also had a calcium stimulation test and that is what reassurred them that there was definitely something going on in the pancreas and we moved forward to exploratory surgery. My 1 year anniversary of the removal of the Insulinoma is coming up next month and I’ve been doing great and had no issues.
I am not sure what AC1 is? Is there another name for it? I tried to look thru many of my lab reports/test results and didn’t see anything by that name.
Robin,
Yes. The doctor said he didn’t see anything. I wanted to ask here if others here had their first EUS show nothing, but they did end up with an insulinoma.
I am making an appt. with another endo, just to get someone to take a fresh view of the situation. Insulinoma or not, something needs to be done about my low blood sugar swings.
As I asked earlier, did anyone here have an A1c done while they had their insulinoma? Just curious what it was.
I think my old doctor was just assuming it is pre-diabetes, but to me, that makes no sense. My fasting sugar this morning was 73. My A1c, done a few months ago, was down to 4.5. A few years ago it was at 4.9. None of these numbers even suggest diabetes. I wasted 2 years with that doctor, and am trying to find someone who will figure it out.
sue,
Did you get the results to your EUS that you had done earlier last month?
I do the same.
I check in whenever i get an email that someone posted to see if I can help.
Are there many still reading here?
Hello everyone,
I am being referred to Mayo Clinic for suspicion of Insulinoma. I wanted to share that all of your posts have guided me throughout this long painful process. Thank you for sharing all of your stories. I am much more confident in my future steps.
I have been unable to work for nearly 2 years, and all of my symptoms had been attributed to autonomic neuropathy, but after finding a local endocrinologist (who trained at Mayo), she ran a hypo panel on me at fasting, then after that came up normal, ordered it after I ate. My insulin, c-peptide and proinsulin were quite elevated. Home glucose monitoring has yielded a low of 60, but also wide swings. On one particular symptomatic day, I caught a fasting of 108, then within a hour of eating oatmeal and almond milk, it reached 230, then dropped to 74 in 9 minutes. Haven’t read of anyone with such wide swings, so would love to hear if this sounds familiar.
Thanks again for sharing your stories. This site has been a gift, and I am better able to prepare for my appointments.
Sarah, it is called acanthosis nigricans. It is common in people who have high insulin levels due to insulin resistance related to diabetes. I had wondered since those people had this brown coloring on different areas of their skin, I figured people with insulinomas would have it too. But, I have never read that anywhere regarding insulinoma people having acanthosis nigricans.
Did anyone ever have their A1c levels tested?
Could be a total coincidence. Where did you read about it?
Thanks, Sarah, for letting me know about your brown spot. I appreciate it. That certainly sounds like it might have been related to the elevated insulin levels.
Jack, yes I got tightening sensations after the op. Not exactly pain but not comfortable. I was told it was cos the nerves had been cut and as they mended you start to feel things again and the muscles are knitting together and involuntarily tightening etc. Be very careful not to strain and walk as often as possible – I walked with a stick for about 3-4 months – mainly as I was terrified of jarring myself by stepping in a hole (I was walking in a field)- but I could walk further within two months of the op than I could before – as before I would collapse with exhaustion. The muscle tightening has eased off although still occasionally does it. My Whipple op was last Nov 2010.
Sue, you asked about people having a brown stain on their bodies – which you said was a reaction to too much insulin. I was interested as I had a brown stain on the top of my leg (thigh) – about the size of a side plate – I have just looked again and it has gone! I had a Whipple operation to remove my insulinoma last November, 2010, having been first diagnosed in 1993 and having had symptoms for some time before that. Anyway, all cured now and feeling so well. Some people have asked about the scar being numb and sore – my scar is not really sore but sometimes twinges and is numb – but a friend who had a caesarian section says she was still numb 6 years later – so I am not worried and presume it is just normal after having all those nerves cut through. I am now strong, everyone comments of how ‘bright’ I look – after the fog I was living in for so long. Life is good!
Jack. I also perspire a lot when having an attack. And when it is over I am all wet and start to feel chill. So that part I also know.
I hope they soon find out what your causes your attack 🙂
Tina
Tina,
Thanks! Your English is great. At this point I am hard to scare. I will continue to monitor. One other ‘feature’ of the attack I feel is that my body heats up and I really perspire. Afterward I feel chill. One thing that has helped from a practical point is that they told me to stay down and raise my knees and legs higher than my chest. I don’t know what is going on and I’m grateful for you input!
jack
Hi Jack
I had my Whipple in January 2009. And a couple of month after my surgery I started have kind of attacks (I’m sorry if my english lacks a bit – I’m danish :-)) with pain in my midsection – just below my breast. It almost felt like when I had gallstones some years ago – before I had my gall bladder removed. Time went and there could be weeks without any attacks – and weeks with 3-10 attacks. I went though severel scans – but they found nothing. Until Xmas 2009 I got jaundice (correct word? Google Translate…). I went yellow and all of my body ittched.
They then found that my biliary was blocked by scar tissue where they were attached to my colon.
I had a PTC drain (correct word???) inserted and had it in for 2 weeks to open my biliary. It helped for about ½ year – and then another drain. Last time was september 2010 and now I am about to have the drain for 2 weeks again.
I don’t know if this is your problem – but no doctors took me serious until I got the jaundice. Then they suddenly said that this was a well known side effect from the Whipple operation.
So if this sounds anything like your “attacks” – maybe this could be the problems. My attacks varies – some are just 10-20 minutes – others last for hours. Most times it hurts so much that I vomit from the pain.
Hope I didn’t scare you – and I hope that whatever you are experiencing will be over soon.
Tina
Had a strange event last Saturday night. I was sitting on the couch and felt my mid-section seize up, tighten, and it was painful and I had a hard time breathing. I stood up, thinking I could get some air, but after a minute or so of no relief I eventually passed out. At the ER, everything checked out, there were no issues evidenced by CT scan, X-ray, blood work, etc. The folks in ER and the surgeon, whom I had an appointment with on Mondayy, suggested some type of vagal response, but generally they weren’t sure.I know I’ve felt this type of pain through my midsection since the operation – many times it is mild.
I wonder if anybody else has experienced this type of thing in post Whipple op? I’m a bit more than a month out from the operation.
jack
EUS tomorrow. Finally here. Here’s to hoping the mystery is solved.
Thanks for the note Kim,
I had a scary setback last week, last Tuesday, about a week ago today. I had slept pretty well Monday night but woke up with with severe pain and began vomiting blood. It was a lot too. So we called Johns Hopkins and went to the local hospital ER where they put the tube into my stomach to get the blood out and then later was transferred up to the JH ER in Baltimore. Bleeding stopped that night, but there was also a large absess that opened from the drainage holes that had closed. That had never properly healed either.
From there it was endoscopy and angio-gram and monitoring and CT scans. They found one thing – some loose stitching in the connection between the stomach and intestine, which they fixed. Nothing found from the angiogram. Over the weekend I moved out of the ICU to a room and started on a regular diet. Eating was a chore that required force of will but I was able to hold food down. I was released Labor Day and am at home now. I am encouraged this time around because in general I feel better and I am able to eat without nausea or acid reflux (thanks to the medications) and my appetite seems a little better.
As far as oxicodone goes, I didn’t go back on it in the hospital and asked instead for minimal dosage of Tramadel. The pain from the surgery is less – as I’m about a month out from the surgery date. I am glad to be done with oxicodone.
Hi Jack,
That’s interesting about the oxycodone and that it’s not that your tolerance is increasing but your pain. Have you been able to get up and walk around at all. I’m a big believer in that helping the healing process but I understand it’s not possible for everyone to do.
My appetite did not return for a LONG time, and I couldn’t manage to eat very much at a time. So ironic after all that time of constantly eating or worrying about eating!
Take it slow!
Hi Kim,
Recovery has been difficult though after talking with the on call physician and surgeon’s nurse the other day it is within the norm. I’m at just under 3 weeks and still sporadic appetite and little ability to follow through with eating – some times, some foods. They gave me script for oxycodone and for tylenol. When I use the Tylenol – anything but the oxycodone – I sweat profusely. Oxycodone is certainly a jealous lover. Still to early to worry about weaning, so that is a worry I let go of. In answer to why I was needing more oxcodone now than when I first started and it wasn’t lasting as long, the nurse said that was normal – the anesthesia is leaving the body so the body is exposed to more pain. I had thought it was just increased tolerance.
I found that the surgeon’s approach to laparoscopic surgery was “that there was another unit in Hopkins who was doing these…” and I could follow up with them if I wanted to. In my case he didn’t really recommend it. However, I wonder if he would recommend it under other circumstances. Seeing the other post about the UC doctor made me think about it.
Yay! I’m going to have the EUS done! I’ll find out in a day or two when, but met with the specialist today. I think endocrine tumors are the only tumors people are actually happy to have found! I hope one is found in my pancreas so I can quit living my life around a feeding schedule.
John and all my kind readers,
I have installed a plugin to sort comments in descending or ascending order.
There is an icon in the top of the comments and you can click on it to reorder comments at your will.
I hope you find it useful.
Best of all,
JM
Hi Jack,
Very happy to hear that you are doing well. I had my surgery at JH too and perhaps by the same doctor. I found the complete experience to be excellent however, Since my insulinoma was on the tail, I wonder why I couldn’t have had it done laparoscopically? The scan was not definite, there were 3 radiologists playing rock-paper-scissors to decide whether to say it was the tumor, so perhaps my surgeon was leaving open the possibility for exploratory. i don’t know but I would much rather not have this huge scar! Also he used some thick stitching material for an under layer and I can feel and see the knots under the skin, and some times feel them rubbing which can be uncomfortable. i have had a couple taken out. Small matters but the thing is that every patient is different and that should call for considering a slightly different solution(s). Keep on healing and take care!
Hi Sue,
No, the prognosis was that the pancreas has enough insulin producing eyelets to generate enough insulin. The surgery removed about 50 percent of the pancreas. Right now I am taking enzymes with meals but am not on insulin. Again, I’m just starting to eat so we’ll see when I get back to a regular diet. I will need to work with my endocrynologist to find the right balance. It is possible that I may need to supplement with insulin – though it is too early to tell.
Laura,
Thanks for you comment. I just now saw it. You do indeed raise a good point – I think there may be that tendency at JH to say: we do this well and it works and this is what we’re going to do. I had gotten two opinions, both of which pointed at the Whipple – in part I believe because of size and location (3 cm on the head of pancreas). I think I might have pursued your route – and it sounds wonderful, less intrusive, alot easier recover – if the option was there. But that said, I wanted to be done with it once the diagnosis was clear and I felt some security in the more conservative choice.
Sounds like an ordeal, but I’m sure worth getting a normal life back! So, are you now a diabetic due to the Whipple procedure?
I just got home yesterday from Whipple Surgery at Johns Hopkins. Surgery was August 9. They successfully removed the tumor and my body has begun its adjustment to the new plumbing. Twelve days in the hospital. In the process of the gradual weaning away from IV and introducing liquid and then solid foods I first had delays in having bowel movements and then after those started began vomiting. I guess this is fairly common. The doctors called it “delayed gastic opening.” So Aug 17 they did a CT scan and found everything okay. However, I was still nauseous and weak. The following day they removed the drainage tubes and on Aug 19 they did an upper GI scan in which they trace the flow of liquid through the esaphogous down through the intestines. This too showed positive though the liquid that you have to drink is nasty and caused me to vomit. Fortunately after that I was able to keep liquids and the small amount of solids that I could eat down and they sent me home yesterday.
Right now I have little appetite but my thirst is growing and I can stomach a little more each meal.
I really want to thank Dr. Michael Choti, Dr. Nathan and the other medical staff there for their care and competence in handling my case. For anyone on the east coast of the U.S. I would recommend consulting with Johns Hopkins for this type of thing.
Thanks, Robin. I will let the doctor know about the cyst.
Yes a GI did mine (several attempts actually since nothing could ever be found). I would definitely tell them about it and see if they can see anything while doing it!
Good luck and please keep us posted on what you hear/find!
I am having an upper endoscopy done in two weeks to get biopsies for possible celiac disease. I was thinking of that “cyst” on my pancreas. Is it a g.i. doctor that did your EUS(?) to look at your pancreas? If so, I may let my g.i. doctor know about the cyst and see if he’ll do the EUS while in there.
I received the results of my abdominal CT scan, with an emphasis on the pancreas, and was told I had a small “cyst” on it, and not to worry about it. Did anyone with an insulinoma have it show on a CT as a cyst??
Nicolai
if I can add anything to help on your site contact me….
Good luck with it!
(Hi John)- I saw your comment and couldnt help but comment being the first ever to comment on the site!
………….
Wow over1600 messages and its still going! Im always amazed and pleased that this site has been such a help to everyone! When I found it in 2007 it was a huge relief and so many people helped me!
It is now 4 years since my op and I almost take normal life for granted! I admit I havent been keeping up with all the posts but now they reappear in my mail Im trying to!
I made several friends on here and found support and fantastic advice – I also hope I gave some too!
If you are about to go for surgery – it will amaze you how quickly your body reverts to normal functions! So many symptoms I had suffered I didnt even realise was due to the state of perpetual low blood sugar. I suffered from migraines quite frequently – I cant remember when I had the last one! My hair and nails were thin and poor but although have taken a while definitely improved! Reading was a pain at times and words would swim in front of me but that never happens any more.
I didnt have black outs as such – was treated before they got that bad but would have such severe sweats and lows and would feel so weak and ill. The diazoxide was awful and gave me such bad water retention it was worse than not taking it!
Surgery for me was the most frightening thing Id been through in my life but the only choice in the end.
I was very lucky with Barts in London and the Royal London as the staff were fantastic and the care I still receive is very comforting!
I go for check ups every year and my blood is tested for calcium and basically monitored but all is good! Sometimes I feel a bit low so test it myself but have never been below 4 (UK).
The op is scary but you will get your life back!
If you are still waiting for tests keep on at them – dont get fobbed off, push and make a noise until you get taken seriously, I was lucky my GP studied at Barts and jumped on my symptoms – not everyone is as lucky!
I did a lot of research for myself while going thru the system so if you can be bothered and need any info my posts on my tests and advice are a long way at the beginning! Anyone is welcome to email me and if I can help or direct you in any way I will.
angieanco@talktalk.net
Good luck to everyone and hello to people I havent caught up with for ages!
Angie
I tried to go to the pages by the new first page, with an option to go to page 2, 3 or “last”, and none of it worked. I had to press the area that said “1600 comments” to get back to this list.
Hi All, I was diagnosed with insulinoma just over 12 months ago now, although I have been experiencing symptoms for years. They were escalating to the point that I was aggressive and putting myself and my toddler daughter in great danger as I stumbled around agitated after waking several mornings each week. I had one awful time when I fell down the stairs and started fitting in front of her – she remebers it vividly 21/2 yrs later…
I borrowed a BM monitor and self diagnosed -with some relief – I seriously thought I was losing my mind.
Over the next 9 months I was subject to the battery of investigations, none of which revealed the bugger, until finally a calcium catheter test suggested it was located in the neck… I duly underwent a Whipples in December 2010, only to find that I still have the damn thing. Ho Hum – I requested a 2nd opinion from Prof Caplin’s team at the Hammersmith as my team were unable to offer anything other than repeating last yrs investigations, and suggesting I ‘wait for new technology’. Since assessment last month at the Hammersmith I have had a 68gallium dotatate scan at UCL , from which I await results. The incredibly knowledgable endocrinologist also suggested that I maybe appropriate for a new scan ‘In DTPA extendin’, which unfortunately is not available here in the UK, but will investigate if this latest scan is negative. Still completely fed up with this endless process, but feel better that I did last yr – which I put down to not taking diazoxide anymore – I felt awful on that drug, with no benefit whatsoever. Just want a ‘normal’ life again, eating when I’m hungry, sleeping all night and going for a run or a bike ride with my lovely little girl- sigh!
This website has been a godsend, thankyou!
Hi John’s wife and Nicolai, many thanks for responding so promptly. I do actually work in a school, but am an accountant not a teacher (so I don’t get the school hols off!). I hadn’;t started to pay into the private health care plan, but was in my previous jobs one for 14 years until I was made redundant 2 years ago. Typical – and I would have had my insulinoma then, but didn’t realise. Anyway I shall just wait for a date and not go private – I can’t believe how much it costs, and then as Nicolai says if it isn’t straight forward could end up being a lot more.
I have been suffering from swollen ankles and pain in my middle finger of my right hand, putting this down to water retention from the diazoxide. I had a massage yesterday, and feel so much better today.
I may email you Nicolai to ask some more details of the surgery etc.
Many thanks for your support.
John,
You are totally right. I’ll try to reorder comments backwards so the last comment will appear first. Best of all,
Jon Mikel
This is a general question for this forum.
Can I set something so that I can see the latest comments from people FIRST when I click on the link coming from my email? I always have to scroll miles down to get to the latest comments and it goes way way back over the years! Says a lot for the site tho!
Vanessa? Are you ok?
Jack, I considered doing my operation at John’s Hopkins as well as I had read that the surgeon there had more experience doing the Whipple than any other surgeon in the world. Then I met with a doctor here at the University of Chicago and he talked me out of it. What I concluded is I wanted a doctor who had successfully avoided the Whipple while removing the tumor instead of one who was very comfortable with the Whipple and was looking for an opportunity to do one. I had absolutely fantastic luck wtih my surgery. I went in knowing it would be an enucleation or a whipple and he made the enucleation work. I am now 4 years tumor free. not to make you doubt your decision, but some food for thought. Good luck!
Hi Jack,
I am just curious about why they concluded a Whipple’s procedure is your only option? My tumour was 2cm on the head of the pancreas and was first told that I had to have a Whipple’s. Eventually though, I ended up with standard enucleation at a different hospital.
I know that there can be good reasons for requiring a Whipple’s procedure, but it is my understanding that for benign tumours and experienced surgeons it is only needed in a few cases.
But if the surgeon is that good, he must have a good reason for excluding other options.
In any case, the best of luck to you!
Nicolai
Oh, and one more thing, I always felt tired. Just to vacuum around the house felt like a huge task. I think your body is just exhausted from all the ups and downs. I always felt like I was on a slow motion roller coaster – going up (g force) and going down (more g force). Uggh, what an un-fun time!
Jack, I had my little bugger removed at Johns Hopkins nearly four years ago, perhaps by the same surgeon. I was so impressed every step of the way with each staff person’s thoroughness, professional demeanor, focus, competence and so on. Although I had a wing man, I never felt like I needed one. Plus, if it’s the same surgeon, you get to stay in a really nice wing of the hospital – like staying at the Ritz! Best wishes to you. You’re in good hands.
Preparing for a Whipple surgery next week to remove the insulinoma tumor in the head of my pancreas. I went with the Johns Hopkins surgeon. I was impressed with the experience and the awareness of the condition that the surgeon and team had. This will not be a laporoscopic surgery – maybe because of tumor size and location and his lack of comfortability with the laporoscopic approach. He said there is a team doing that at Hopkins. And I have read about it being done in Georgetown hospital. I am not on medications right now, since the diagnosis in June, but have gained some weight trying to keep blood sugar levels up. When I spoke with the endocrinologist about the tiredness I feel at times throughout the day he didn’t quite know why – except maybe because the body is constantly exerting itself to keep the blood sugar up.
Hi Vanessa.
I was operated at Hammersmith in April, and it went extremely well. Both the surgeon and the physician were great. I was there as private patient as I live in Denmark. I spent 6 days in Hospital in total, but could have left earlier, but they wanted to make 100% everything was fine before I travelled back.
My tumour was on the head of the pancreas and my local doctors concluded that my only option was a Whipple’s. I ended up with laparoscopic enucleation and was just beside myself with joy. The total cost was about £20K, and having looked at options in several countries I thought it was very cheap. But on the other hand, the expensive stuff occurs when there are complications and I was just so lucky not to have any.
I set up a website (www.insulinomas.com) – you can write to me using that email if you like.
I have lost about 2-3 stones after surgery and I never tried medication.
All the best with your treatment!
Nicolai
Hi Vanessa,
I’m in the UK! But I’m not John, I’m his wife – he’s away at the moment – and you sound like you need the sort of reassurance that he, but actually, mostly I, got from this site when he was having his op. which will be 3 years ago in Jan. It really was fantastic for us both – everybody’s in the same boat, but to hear about things that might go wrong, as well as all the encouraging posts from people who’ve come out the other side, was pretty much essential to stop us from panicking!
He also put on nearly 3 stone in the run-up to the op. – all lost now! And the diazoxide made his face all puffy so he stopped it really quickly. It might work for you tho!
When he first went to his GP about the ‘doo-lally’s, as we called them – (seriously out of focus, drunk-like states etc) the GP referred him to someone in Lewisham Hospital (our area) and he had a CT scan on the NHS which strangely (we’ve never known exactly how!) got looked at by a private health surgeon there. He then arranged for another private surgeon at King’s College, Denmark Hill. to take the case on. John is a teacher and had been paying into to health scheme for only a couple of years, but it was enough to get him the surgery privately. I know you probably don’t want to hear that tho! Unless you have anyone at all in your family who’s paying into a private scheme? Or have you ever been a teacher in the state system? It’s worth checking the details of their plan if they are. The complete bill with a couple of aftercare checkups came to over 40K can you believe??! I wonder what NHS surgeons get….? The only advantage as far as i can see is speed things happened privately. The level of care will be exactly the same.
Anyway – if you don’t have access to that, you will very possibly get a a surgeon who does NHS AND private because insulinomas are so rare – and therefore an exciting prospect for surgeons!
I can tell you that he, like loads of others on this site, is now a changed man. He’s still a coeliac, which they insist has no connection to insulinomas, but they’re both autoimmune diseases and, one day, I hope they will research that. It was interesting at the time, when it wasn’t clear if he’d have to have the whole whipple job with removal of his duodenum too (the bit that’s most affected by gluten intolerance), that he would then not be a coeliac any more. His surgeon didn’t know! He had keyhole and then open surgery in the end as keyhole wasn’t enough.
This is getting long – sorry. But I’m sure you’ll be looked after brilliantly. It does take time to get back full strength afterwards, but your life is going to be fantastic so hang in there Vanessa!
Hi, I have just been diagnosed with a 14mm insulinoma in the middle of my pancreas, after 3 years of suffering, and 3 and a half months of tests. I have been told I should be a candidate for keyhole surgery, and am waiting to be referred to Hammersmith Hospital, as am in the UK. I am now on diazoxide, and although it’s only been a few days, do feel it’s starting to help things. At work today I didn’t feel the need to put my head on my desk and sleep for 10 minutes! I am normally far worse in the morning – an hour and a half after breakfast, and have low sugars of about 2.1 everyday at this time. I have 2 young children of 6 and 4, and so life can be tough at times. I’ve had a few days off work in the school hols and just not been able to take them anywhere as I am so tired constantly.
My questions are has anyone had adverse effects to the diazoxide? I’ve read people have put on weight – I have already put on about 3 stone with the insulinoma, and started out with post baby weight, so hope I don’t put any more on.
How long did it take to be referred to a surgeon and then have surgery? What is the recovery time for keyhole surgery? Has anyone else had experience at Hammersmith Hospital?
Any answers would be gratefully received. Good luck to everyone on here!
Laura, I bought a meter about 3 years ago to see what the numbers were when I felt like I was hypoglycemic. That’s when I confirmed to myself that I had been having lows for probably 15 years that were diagnosed as “panic attacks”. I found when I begin getting symptoms, I am usually at 60 or upper 50s. I have been as low as 39(doctor’s office routine labs, but didn’t know).
Robin, I assume I’ll hear next week. I have to do some lab work, on of which she is checking for various causes of hypoglycemia, such as antibodies to insulin and adrenal issues. I have other stuff mysterious medical stuff going on too. The worst is being lightheaded and with heart racing if I have been upright for 5 or more minutes. I stay home and sit most of the time. It began a few years ago, and don’t know quite what started it. I wonder if it is connected to my 20 year history of progressingly low blood sugars.
Oh my goodness the irratibility and meanness toward my family happened to me too! My husband could always predict when I was getting low because my mood would change really quickly. He would always say ” I think your blood sugars are low, check them”. Now that I am not sick anymore and not having any problems, if I’m moody or being grumpy my 7 year old son will say “mom, I think your blood sugars are low”. We can laugh about it now and are SO THANKFUL to be going thru that anymore.
Sue when will know the results of your CT Scan? The numbing/tingling of the hands and face were my first symptoms of insulinoma when I noticed that something wasn’t quite right and talked to a doctor about it. Even after that it took nearly 2 years to actually have it diagnosed. Hoping you have great success with the testing you are doing!
for better or worse, I still remember what it was like and my surgery was 4 years ago! I think the hardest thing about it is “everyone” thinks they know what low blood sugar is and how it feels and most people do not have a clue including medical people. I would highly recommend you get a blood tester. I was testing myself far more often than even my diabetic siblings since the insulinomas are much less predictable. I believe if my memory serves, I was checking my sugar 8-12 times per day, but it did really help me to avoid going super low. It is a really good idea to check before driving as well, I can’t thank God enough that i never killed anyone. I remember my first appointment wiht my general doctor, she told me to fast before the appt (she didn’t believe me either), so i did, I went in, she gave me a physical, we had a nice chat, I left, went and bought coffee and drove 30 minutes on teh expressway to work. She called me in a panic the next day to say my sugar was 29. I was completely coherent and I drove to work. Very, very scary. Take care of yourself!
Laura, thanks for the speedy reply!
Oh, yes, I forgot about the “irritability”! When I begin snapping at family, I know to check my levels. That is a definite symptom for me. Actually, I get all of the above symptoms EXCEPT hunger. The tingling hands really jumped out at me during the low.
yes it is, below is a full list of symptoms:
•
Cold sweats
•
Convulsions
•
Double vision or blurry vision
•
Fast or pounding heartbeat
•
General discomfort, uneasiness, or ill feeling (malaise)
•
Headache
•
Hunger
•
Irritability (possible aggression)
•
Nervousness
•
Shaking or trembling
•
Sleeping difficulty
•
Tingling or numbness of the skin
•
Tiredness or weakness
•
Unclear thinking
I’m glad to see people are still posting here! It is a site with a wealth of information and personal stories.
Hi to the new people! I hope you keep posting on your testing, etc. I just had a CT scan today with a focus on the pancreas. I had my worst low last week, home alone, and thought I was going to pass out. I was trying to drink a cola, call my husband and test my blood sugar. Besides my usual shakiness, anxiety, palpitations, and getting hot, I felt like I was going to pass out, my hands were tingling, and I got a low-grade headache. I was kind of surprised by the hand tingling. Is that normal with hypoglycemia?
I just found this site/page and it is very helpful. I was diagnosed in June with insulinoma after a CT scan and fasting test (I lasted about 12 hours when I registered in the upper 30’s in the endocrinologist’s office). I had been having hypoglycemic episodes for a number of years and trying to manage the condition by eating regularly but of course occasionally I didn’t and then I would experience the hypos. What got the ball rolling was a blackout on the street during a recent episode and seizures and an ambulance trip to the ER.
The tumor is in the head and is 3 cm long. I spoke with one surgeon at George Washington University Hospital and will be consulting with another at Johns Hopkins. (I’m in the Washington DC area.) I’m benefitting from the experiences and advice of all of you who have been through this.
(So often, when I mention hypoglycemia almost everybody I meet says they have it and has an answer for what yI should do – but nobody I met ever experienced what I experienced – thank you.
Jack
Hi there, I am currently awaiting a recent CT scan to hopefully find my insulinoma. I was just wondering how long from diagnosis was it until you had your surgery? Also to any UK sufferers, did you get to chose which hospital to have your surgery at, and if so how did you go about finding one?
Many thanks
Vanessa
Hi All,
Yes, there does seem to be less activity lately on this site. But hopefully it will pick up, so that people needing input will get it.
While I was recovering from my surgery – which went really fast – I set up a website that I have been wanting to do for a while. It’s called http://www.insulinomas.com. I had a lot of plans, but for now I have just settled for getting it up and running. My plan is to make a series of questions so that everyone with this disease can tell about their experiences. However, it will take a while to figure out just how such a database should be set up. So for now you can check out his “first draft”.
I am back at work and find it hard to find the time to work on these things. Please let me know me if you have any comments or mistakes you want to correct (you can email admin@insulinomas.com).
And it feels fantastic to be rid of the tumour. I have lost about 10kg just by eating what I feel is necessary. People find it hard to understand that I enjoy being able to only eat small portions 🙂
Good luck everyone!
Nicolai
Maureen, can you be part of a FB group, like an insulinoma support group, but not have all of your friends be privvy to that?? You see, I don’t really talk about my health issues with all of my friends, and because they don’t understand the depth of blood sugar issues, I don’t want them to see me post to a health group on FB. Does that make sense?? I want to keep my ill-life separate from my friend-life. I don’t want them to see me post about my symptoms, which I don’t mind talking with y’all about.
I’ve found a good support group on Facebook. I agree. There will be lots of posts, here and then a great gap. Remember that there are not really very many of us!
This is site is literally a life saver. I’ve noticed that activity goes in spurts. There will be nothing for awhile, and then a flurry of posts.
I check in every now and then but seems every body has forgotten this site and it was such a resource for me.
Anybody still here??
Just curious.
Just curious. I know that people with insulin resistance, which makes their body put out more insulin than normal to get their glucose in their cells, get brownish areas on their body. I am pretty sure it is due to the excess insulin, as insulin has something to do with the pigment cells melanocytes.
Has anyone with an insulinoma remember if they had a “dirty” looking neck or other areas on their body?
Congratulations Nicolai on the wonderful outcome! Doing your research has paid off. My surgeon prepared me for all oftions and like you thetumor was removed easily and no resections. I did have my drain in for @ a month and it was removed 1 1/2 weekd ago and I still have some drainage but it is healing , and the incision scar is just a small line now. I go back to work today less than two months after surgery. I wish you a great and easy recovery and now enjoy life with normal blood sugars!
Hi all,
My surgery is now completed and I am happy to say that it went extremely well! I had originally been told by my doctors in Denmark that they could only offer me a Whipples procedure due to the location of my tumour (on the head/neck of the pancreas close to the pancreatic duct). I therefore spent a long time speaking to hospitals and surgeons around the world that were much more experienced in this area. In the end I had my surgery at Hammersmith Hospital in London, both because they are well-known for the expertise in endocrine medicine, but also because they felt confident they could treat me without doing a Whipples.
The best outcome I could have hoped for (along with all other “insulinomiacsâ€) was laparoscopic enucleation – and this succeeded! The surgeon said it was complicated due to the location, but in the end all went according to plan and there were no complications in enucleating the entire tumour, which was about 2.0 cm in length. I had a drain for 6 days, but mostly it was just to make absolutely sure nothing would go wrong – there was only a little bit of fluid coming out and the concentration of amylase was fairly low and quickly dropped. Generally, I have to say that they took very good care of me and that I am amazed how easily it all went. After 3 days I didn’t even need pain medication any more. My biggest problem was nausea, which I actually think was related to the pain medication. My blood sugar spiked after the surgery (which is normal) and the night after the surgery is was 11.2 mmol/L after having no food! This comfortably beat my old record of 6.3 measured after a huge dinner and a bowl of sweets. Now my blood sugar seems quite normal, when fasting it is now about 5.5, which is just such a relief. The doctors actually seemed more concerned about high blood sugar and making sure my pancreas starting doing the work the tumour had been doing for so long – but I think it’s looking fine.
I just feel so happy and blessed. I am now back in Denmark reunited with my 1-year old daughter. I feel fantastic and I am so pleased that all my work concerning going to private hospital abroad paid off.
I still haven’t received the histology on about the tumour, which obviously is important. So now just keeping my fingers crossed that the tumour was completely benign.
One last thing I would say to all those with a tumour on the head of the pancreas, possibly facing a Whipples. Since my surgeon was a pancreas expert he sat me down before the operation and explained all the possible outcomes. It was a great relief to hear about all the types of surgery he had prepared for, before he would even consider doing a full Whipples. Two options were e.g. doing small resection of the pancreas and covering it with the stomach or cutting the pancreas in two and attaching the second half to the digestive system. It’s just to say that regarding a Whipples, it’s not either or, there are many steps in between.
Good luck everyone, and thank you for all the help.
Nicolai
It is both heartwarming and distressing to read these messages still. I am 30 months post-surgery and can say that, for me, life has been totally restored. I can scarcely remember the problems I used to have but my wife and family certainly do – and my work colleagues who constantly tell me I look fine.
I am indeed fine. I had little trouble after the tumour was removed apart from the ghastly abscess – and I am 62, playing the piano and working as never before. Occasional back pain aside… and that’s getting less and less. Scans come back all clear and, apart from a bit of blood pressure stuff (common among men of my age, and under control) I consider myself cured.
I hope that all here can look forward to that happy condition! The support offered here is worth everything and I owe you all so much.
The insulinoma is the enemy, finding the right surgeon is the problem, the treatment is seriously traumatic – and the outcome is wonderful.
My warmest good wishes to all – sufferers, success stories, worried ‘starters’ on the road, advisers, family members, surgeons. We need one another.
John
Hi all long time no see!
Just catching up again on all the new stories. I’m 2.5 years post op now,doesn’t time fly, and feel pretty good 🙂
Was reading about April’s discomfort around her scar and I must say I still have the odd twinge as well.Do you notice it more with the changes in the weather? I do!
Recently this last Christmas I was under the knife again. I was having discomfoert around the site of the old op around the head of the pancreas and kept putting it off because I thought it was due to scar tissue,turns out I had a severely enlarged and infected appendix tucked up under my liver,and nasty lymph nodes to go with it. I had to undergo a right hemicolectomy ( fancy wording for losing the right side of your colin) but all pathology came back clear. My friends tell me to stop going to hospital to remove bits of organs when I want to lose a few pounds.
One thing they did say was that I was a bit of a mess inside scarring wise due to the insulinoma surgery so if anyone feels lots of pulling and tightness your probably tied up inside like I was. The surgeon said he cut alot of it away but the bowel is still attatched to my stomach. I can deal with the uncomfortable belly because the allternative was worse.
Take care to all and I hope everyone has great outcomes from their surgeries.
Nic ..
Not a problem! he sometimes posts to peoples questions on one of the MEN1 sites, so i just threw him a note. He is quick about responding!
Wow, Steve!! Thanks so much! That was so thoughtful. I will do that.
Hi Sue,
I sent a message to Dr. Woltering and he said that yes, he does in fact, do All of the Neuroendocrine tumors and to have you call Pam Ryan who is his new patient co-ordinator. Hope that helps!
Good Luck and keep us posted!
Steve
I actually called his office to possibly make an appt. with him a year or two ago. I know he works with people who have a Carcinoid, but assumed with he being a neuroendocrinologist, he would address insulinomas, etc. The lady that answered the phone, when I asked to possibly make an appt. with a neuroendocrinologist, said something like” we don’t have that.”(I was completely in shock with her reply, as I know he is a neuroendo.!) I can’t remember all she said(awful memory), but I was under the impression he didn’t work with anything other than carcinoids. I also got the impression that he only sees someone once they are diagnosed. And that, I can’t get.
Do you know anything more of him? That maybe I am completely wrong and he will see someone with a possible insulinoma and not diagnosed? I appreciate your info!
Dr. Woltering is the guy at LSU. He is a great doctor with a ton of information. He specializes in Neuroendocrine Tumors. So you have tumors on your adrenals? I wonder if you are a MEN’er like me. I have MEN1, with tumors on my Parathyroid and a microadenmoa on my pituitary. I would definately recomend trying to speak to Dr. Woltering. I have had the pleasure of speaking to him on one of the MEN boards and he is full of knowledge.
Robin,
Yes. Dr. Thompson was my surgeon. Though, it is hard to describe going through all those tests in a week and then going through a very serious surgery as wonderful, I would say I felt very well taken care of while I was there. St. Mary’s hospital is beautiful and as pleasant as a hospital can be. I would suggest that anyone suffering from insulinoma, get an appointment there as soon as possible because they are great at diagnosing and finding the tumor. I was told that there had only been one patient that was diagnosed, whose tumor they had not found.