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.
Hello everyone.
I am so happy and thankful to have found this site! I am 36 years old..and live in Dallas texas. I am in the beginning stages of finding out if what i have is an insulinoma. (although after reading this site i am sure i do!) About 5 years ago is when my symptoms began. My life has been a scary ride ever since! Im married with two little girls, ages 2 and 4 and the scariest part of this whole disease for me is my childrens safety! I cannot even count how many times the paramedics has been to my house..once on the road for a hypo attack while driving…and once at the grocery store when i was with my daughter. It totally traumatized her at the time!! My blood sugar averages in the 40s with the lows in the 30s. through the years ive gotten better at recognizing the symptoms….confussion, shakiness, cold or sweating,…drunken behavior. I have had thee endocronologists, and i do not know how many dieticians….finally a endocronologists listened to me about my crazy sugar drops and did the much needed tests..
i feel for everyone who suffers this disease. it has trully robbed me of leading a normal life. I am in constant fear! everyone here sound so brave and strong… i know it will help me for the road that lies ahead! On friday april 11,08 an mri showed a 1.4 lesion in the head of the pancreas. I have a consultation for my endoscopic ultrasound on monday the 14. what does that mean to have the lesion on the head of the pancreas? Is 1.4 big? What happens at a endoscope ultrasound? Thank you! Pamela
ANGIE
Hi,i was just wondering if you had to go to london for your fasting test or could they do this in brighton.Also who did you see first of all to get the ball rolling im still waiting for an appointment with the endo and after having two years of illness and tests i cant wait to see them.
EVERYONE
I have foundn that i cannot tolerate alcahol since not being well,also things seemed to come to light after having my gall blader removed also my daughter is seeing a endo with regard to pcos i was wondering if anyone else could relate to this
many thanks,
celina.
ANGIE
Hi,i was just wondering if you had to go to london for your fasting test or could they do this in brighton.Also who did you see first of all to get the ball rolling im still waiting for an appointment with the endo and after having two years of illness and tests i cant wait to see them.
EVERYONE
I have foundn that i cannot tolerate alcahol since not being well,also things seemed to come to light after having my gall blader removed also my daughter is seeing a endo with regard to pcos i was wondering if anyone else could relate to this
many thanks,
celina.
Michelle,
My 84 year old mother was operated on successfully to remove an isulinoma last November. We are convinced she wouldn’t have made it past Christmas without surgery because she was in such bad shape. She would have lapses into semi conciousness if she didn’t eat a peanut butter sandwich in the middle of the night, for example, and she had gained 50 pounds which aggravated her heart problems. She was never hungry, by the way. She, too had been discouraged from surgery because of her age, but all the tests pointed toward insulinoma even though it didn’t show up on the CT. Dr. Norton at Stanford Hospital was confident that she needed surgery and found and removed the tumor during surgery. She had an epidural in place before surgery and it was kept in for four or five days thereafter. She never even had bad pain and was up and walking and eating lightly in less than a week. She has a scar going all the way across her abdomen!! From what I read here, she had an easier time of it in recovery than some of the much younger patients. That’s not to say everyone should expect that kind of recovery, but it should be of encouragement to some. We are thankful for an excellent surgeon and many prayers.
My mother has been given her life back. She has lost over forty pounds and is back to driving in the mornings without having to first eat a large quantity of carbs to elevate her blood sugar to an acceptable level. As we speak, she is now happily hosting a bridge party at her home. At her last bridge event before the surgery, she lapsed into semi conciousness and her friends had to call an ambulance. Needless to say, they, too are thrilled to see her back to her old self.
With an experienced surgeon, surgery can be very effective for elderly people in otherwise good health. There are quite a few tests which can point to a diagnosis of this illness, but sometimes the actual tumor can’t be found until surgery using means only available at that time. I would only go with a very experienced surgeon with a stellar track record, however. My best wishe for your mom!
Michelle,
When I first started noticing the symptoms of my insulinoma, hunger and shakiness were the predominant signs that I was crashing. Over time the symptoms changed and hunger was not one of them. I would get dizzy and confused instead. It may have been that I was so tired of having to eat all the time as Laura mentioned.
celina, the 72 hour fast proves that your blood sugar will continue to drop if you do not eat. It also proves that you are not taking insulin to artifically make your blood sugar drop. Just having low blood sugar does not mean insulinoma. But if your blood sugar continues to drop, then it is extremely likely that you have an insulinoma. If you read above, many people share their 72 hour fast experiences. They rarely last more than a couple of hours and it is really the easiest of all teh tests you will go thru. good luck!
Michelle, I was never hungry when I had my insulinoma. Quite the opposite actually, I was completely sick of food because I had to eat so often. It is very major surgery, and I can understand not wanting to perform it on someone elderly, but if she is in good health, I would guess someone would do it for you. As for her going forward without surgery, eating every 2 hours is the key, even if she is not hungry. Does she have a blood glucose monitor so she can monitor herself? I used to check my blood 8-10 times per day which was crazy, but it does work. good luck!!
Laura
Hi im from the uk near brighton,my story is quite a saga so i will try to keep it short.It started in may of 2006 at gatwick airport i was taken ill and instead of majorca i ended up in hospital,they discharged me later that evening thinking i had probably been sick and hyper-ventilated causing confusion and loss of feeling and speach.Two weeks later i ended up in brighton hospital for two weeks having test after test including a lumber puncture that showed a high protein level so was told i had viral encephilitas and was put under the care of a neurologist.
Nearly two years later and further episodes and tests i am now being refered to a endochrinologyst i was wondering if anyone could tell me what to expect when i see them the neuro mentioned a 72 hour fasting test he also said that nothing would have shown up on the many blood tests i have had in the past.
I am pretty certain my mum has an insulinoma but getting it diagnosed is another matter. Symptoms started about 12 years ago and she was diagnosed with epilepsy after a series of fits but I didn’t believe the diagnosis. She was admitted to hospital with a suspected stroke after going comatose then arousing with slurred speech but after she’d spent ages in the hospital corridor I got her a fizzy drink and she came round properly. Her blood sugar regularly drops below 2.0 and has been down below what the monitor can register but the glucose test they did showed nothing. A CT scan showed a small lesion on the pancreas but they said at 72 they wouldnt operate to find out what it was because of her age. I’m sick with worry that she’ll go in to coma when I’m not around. One thing that confuses me though is that everything I’ve read on insulinomas talks about hunger as a symptom, despite having put on lots of weight she has no appetite at all. Anyone else have a lack of appetite?
Thanks, Michelle
Hi,
I had an insulinoma removed when I was 17. It was exremeley unpleaant, I was diagnosed with epilepsy and I thought I was going mad. I am now 52 and have a reoccurance, although it has not been located but my chemistry confirm diagnosis. I take a lot of diazoxide which does help, but it doesn’t iradicate symptons completely.
Having spent a large part of my life with very low blood sugar it is nice to read the posts of others who know exactly what this feels like. Good luck to all.
Janet
Jane
I must agree with you, the care I received from the NHS couldnt have been better when dealing with my diagnosis. My doctor picked it up from my blood tests – when i complained of feeling tired all the time, then talking through my history. She had trained at Barts so was immediately interested. I was referred to my local hospital within the week and they transferred me to Barts as they did not have the sufficient experience to deal with it. From diagnosis by my doctor in may, all the tests and scans were done and I was seeing a surgeon by october. My op was the following february. I thought that was pretty good going for the UK.
My stay in hospital however after the op had a lot to be desired and thats where you see the flaws in the NHS – the staff were just up against it all the time.
Kylie
My uncle wasnt the specialist but a colleague of his, but it still would be funny! Ive tried to find the article on line but there is nothing there. I think the review is by “F JOHN SERVICE MD PHD” its just called “Insulinoma” Feb 2006. I doubt this will help much but keep a look out for his name.
By the way we have plenty of rain, and wind and nasty cold weather and you are welcome to all of it!! Just send some sun!
Peggy
How are you doing?
Best to all
Angie
Sorry Jane,
I do tend to get confused quite easily, thank you for clearing that up for me.
Hope things are still going well for you (just went back & checked your blogs).
Yes, we have plenty of sun at the moment, but if you have any spare rain could you please send it on over.
Kylie.
Hi Kylie,
Think you’ve got mixed up with USA health system and British health system. I’m in Britain and the NHS could not have done more. From the swift diagnosis (after being admitted in a state of unconsciousness they had me X Rayed and CT scanned at 3 am; opened the scanner up especially), to being referred to a surgeon who had removed a few insulinomas before in the Midlands. And they are keeping an eye on me for 2-3 years both in my home town and at QE in Birmingham. And all free! However we still don’t have much sun!!! Good luck.
Jane
Hi Angie,
It is a small world. I have to travel to Perth to see any specialist, it is about 600 km away (375 miles, doesn’t sound that far in miles). Wouldn’t it be funny if I ended up with your uncle?
After reading through the experiences some of you have had with NHS, I realise how lucky I am. We have quite a good system in Aust, especially if you have Private Health Insurance, just nominate who you want to see & most of the cost is covered.
I think finding someone with a lot of experience in insulinoma is going to be the tricky part. Working on the theory of 4 in a milllion having it, means there should be about 8 of us in WA, and 84 in the whole of Australia.
I agree, laparoscopy would be better, especially since I am HOPING that surgery may reverse my early menopause & I may be able to get pregnant (maybe a little late at 37/38).
Shark bite would definately be more convincing down here on the south coast, we have plenty of very “friendly” White Pointers. Only have crocodiles right up the top, the only time I have ever seen one is in a zoo (mind you, I’ve never seen a koala either).
Must go now & check my cows (a farmers work is never done).
Hope you are all having a wonderful day!!
Kylie.
Kylie
You did make me laugh – a legend!!! Its the people who replied to me that are the legends!!!
I cried when Helen replied and she was only “up the road” in Brentwood! Essex. She had been through it with the same doctor and the same surgeon so she helped me so much.
When I found the site with no comments on at all I really didnt expect to be still writing on it in a years time. Id been trawling the net trying to find information on insulinoma and all I could find was info and stories about dogs or ferrets!
My experience with the NHS in UK is very different to the way things are done in the US and probably NZ and AUS but it does help to know what other surgeons are recommending or doing! My uncle is a doctor in Perth WA and he sent me some info on a study which was interesting – a bit technical tho!
One bit of advise which everyone will agree on – find a doctor and surgeon who really know their stuff on insulinoma, ask them how many they have done and their success – ask them if any have regrown after surgery. Can they and do they do laparoscopy as its so much better for recovery – mine didnt, he needed to get right in!! And have I a scar to prove it! (Actually its fantastic even tho its 9 inches across its very pale and neat – Im waiting for someone to ask so I can say Ive been bitten by a shark!)
Anyway if there is anything you need to ask however stupid we are all here to try and help offer any advice.
Would a crocodile bite be any more convincing?
Good luck!
Angie
No Probs, Hazel.
Looks like you & I are the start of the Southern Hemisphere Club.
I will let you know when I know anything more.
Kylie.
Hi there Kylie,
I hope your visit to the new specialist goes well and that he can finally help you to get well. I’d love it if you’d let me know anything you can about the good insulinoma doctors in Australia as it would be so much closer. Thank you for thinking of me and good luck for April 2nd.
Hazel.
Hi Angie,
Great to hear from the instigator of the site – what a legend you are (and Dr JohnMikel as well, of course)!!
Everyone’s stories and support has given me back my confidence to get back out there and demand some answers – Look out world, Kylie is on the rampage.
Hazel,
As my closest neighbour, I’ll let you know what I find out about Specialists and Surgeons over here in Oz (it may be a closer option for you).
Best of luck to all those who are on the path to recovery, hopefully Hazel & I will be on the same path in the not too distant future.
Keep on smiling!!
Kylie.
Peggy
So glad to hear it all went well and you are getting on your feet – a little too quickly by the sound of it! Having keyhole surgery makes so much difference to recovery! It took me weeks rather than days! Mind you every day I actually felt stronger! Take it easy and no running marathons yet!! I can just see you celebrating the end of 15 years of illness and stress somehow!!
Hazel and Kylie
Glad you found the site it really helped me when I couldnt find any info on insulinoma at all. There are not many people on here from the uk but hearing about everyone from all over the place is pretty cool!
Hazel
I didnt have blackouts either but my doctors said it could happen at any time and the symptoms could get more severe. I think my symptoms got a lot worse in the last two years which is why it was identified but Id had symptoms for 10 years or so as far as I could remember! I never realised there was anything wrong with me, just that I had low blood sugar and had to eat sometimes as I felt shaky. I can identify so many more of the symptoms now that they are gone.
Kylie
I was truly terrified of surgery, originally I was going to avoid it anf try the tablets but the tumor was in the head of the pancreas near a vessel, and there was the danger of it getting bigger and surgery not being possible without removing a large part of my pancreas – as it was I was warned i would have to have a whipple operation which scared me to death, luckily I didnt have to and my surgeon only had to remove the tumor not any pancreas. Surgery is such a big thing for us but the surgeons are always so nonchalant and relaxed about it and believe me it is worth it!
Good luck both of you
Angie
Hi Peggy,
You are my hero, after reading what you have been through over so many years. Thank you for your words of encouragement.
I may have to introduce my new specialist (2nd of April) to this site (if he doesn’t already know about it), surely the best way to learn more about this affliction is to hear it from the afflicted.
Hope you are having a wonderful day!!
Kylie.
Hi Kylie,
Trust me, you will remember what normal is like. It comes back! Mostly the enthusiasm for life. At least that is how I feel, and it has only been 4 weeks! Don’t be afraid of surgery, it wasn’t as bad as I thought it would be and is soo worth it. The trick is to find a doctor that can do it laparoscopically.
You may have read that it took them 15 years to find my tumor. It was there all along though. I would ask your new doctor what the percentage of insulinomas cases were confirmed using their equipment and technique. I had a CT done just months before that didn’t find it, before I went somewhere else.
Hopefully this is your time to be healed. Keep the faith!
Peggy 🙂
Hi Kim,
Thank you for responding to my message. All the blood tests I have had all point towards an insulinoma. Actually did have a CT Scan but they couldn’t see anything, that was when I was told to go home & live with it, but I am sick of living with it & I suspect that it has caused PCOS & I hit menopause at 33 (no wonder we couldn’t get pregnant). Has anyone else been diagnosed with PCOS? Anyway, have booked an appointment with a new specialist, hopefully he will be a little more open-minded.
Have loved reading through everyone’s experiences, I have been terrified at the very thought of surgery & possible after effects. You all give me hope of a new life (don’t know if I can actually remember what a normal life is).
LOL, Kylie.
Welcome Kylie,
The diagnosis should be fairly straightforward. Its finding the timor that can be difficult and frustrating. Keep us posted on your progress! Lots of good advice here. I dn’t kknow what I would have done without this site!
Kim
Homa – Are you out there? Just wondering what is happening with you? I’ve been thinking about you and hoping all is well.
Kim
Hi Everyone,
So there is more of us out there in this big wide world, only been looking for a website like this for the last eight years. Just a quick “Hello” for the time being (have to go & eat). I am 37, from Western Australia, diagnosed as suspected insulinoma about eight years ago, can trace the “symptoms” back aprox 18 yrs (always thought I just had a fast metabolism). Finally decided to trade in the dinosaur of a specialist I was seeing (who had written me off because I’m not overweight) & making an appointment with someone else on Monday.
Just excited there is finally people out there who understand.
Hope everyone is having a great day!!
Kylie.
Peggy,
Thank you so much for the information which I will follow up. I am truly grateful that you took time out from your own recovery to give help and support. I just may need to call on your expertise again!
May good things come your way.
Hazel.
Thank you Penny! Sometimes when I wake up in the morning (by myself!), I am smiling, even before I am fully awake, because I am thinking clearly and anxious to begin my day! My body is a lot weaker than my mind at this point. I tried to do some laundry today and it just wore me out completely. I guess I have to be a little more patient. 🙂
I was only in the hospital for 3 days. I could’ve used one more but I was so anxious to be home with my family (and actually get some sleep at night). Thanks for your prayers Penny.
Hi Hazel!
You may have read that I have had 2 endoscopic ultrasounds done at UCLA and multiple MRI’s and CT’s done in Orange County in the last 15 years. The last CT was done just months before the CT at USC, but the former did not find it.
My surgeon at USC, Dipip Parekh, said that there is not many doctors who can remove insulinomas laparascopically. Parekh is one of the few who can. He said he has seen 40 or 50 insulinoma patients, and could not locate the tumor in only one patient. He also said that their technique used at USC can find the insulinomas in 90% of the cases!
Pretty good odds. I’d say you were wise to come check them out.
I hope your search ends in answers and brings healing soon. Insulinoma is a very difficult disease to live with.
If I can give you anymore information or help with your search, please let me know.
Peggy
Congratulations steve & peggy!!!! I am so glad your surgeries went well. Peggy, how are you feeling now?! Are you out of the hospital and at home?
Hi Peggy,
I hope you are still doing well and are able to get comfortable. I appreciate your feedback on USC and am making inquiries about having diagnostic tests done there. Partly due to your great outcome and partly because I can fly direct to LA from New Zealand. I have to admit it is a bit like working blind, being so far away and trying to work out who to contact etc, but I’ll get there! If you do feel up to posting I’d love to know the name of your surgeon seeing as they did such a good job.
Take care of yourself.
Hazel.
Thanks Kim,
Hiking…I’m mentally ready! Just have to wait for my body to catch up. Isn’t it wonderful being sane, 100% of the time! I’m also looking forward to that energy everyones talking about having.
Steve,
I’m so glad you are feeling better and returning to work (though I can’t relate to that part). I love your attitude!
Rebecca,
How did that 72 hour fast go for you? Are you officially one of us?
Wow, I’ve been reding posts and all of a sudden I feel even more fortunate. The wait was worth it. First of all because I have allowed God to use this disease to teach me and I’ve seen Him work in the lives around me as well. Now I hope I can use what I’ve been through to help other people who have to go through their own trials. Also, waiting brought me to an excellent hospital with an awesome team of doctors. My surgery was just over two hours, the spleenectomy wasn’t nessessary and though I lost only a small part of the pancreas, it hasn’t caused any problems.
This operation was definitely my doctors area of expertice.
If anyone new has not been diagnosed yet, please consider USC Hospital.
Yeah Peggy!! You’ll be hiking again in no time – congrats!!
Hi,
Having struggled with hypoglycemia for many years I’m trying to find or rule out an insulinoma. My doctor thinks this is what I have and my symptoms are just like a lot of you describe except that I don’t black out. The hypoglycemia is however, severe enough to stop me sleeping without waking up to eat and causes a lot of other symptoms such as dizziness, slurred speech, racing heart and inability to concentrate etc.
I’d love some advice on which the really specialised hospitals are, as I am in New Zealand which does not have any insulinoma specialists and I’m fully prepared to travel to find this thing.
Thanks in advance for any suggestions you can give me, Hazel.
Hi Everyone!!
I thought this day would never come. Surgery was a success, the recovery room was a nightmare, but it’s all worth it in the end. They only took a small part of the tail and left the spleen. I had the drain out today, very weird. Not much pain anymore, but I have been runnning a temperature. Other then that I just feel very week.
So that’s my story, I’ll post again after I read all the updates. Thank you all for thinking of me and praying for me. I know it made the difference.
Peggy
hey guys,
been a while since i wrote, so i thought i would give you an update. so far so good after my surgery, no issues with blood sugar levels, and my stomach is FIANALLY working! woo hoo!! i talked with my docs out in Iowa and now we will wait another month or so and re-image to make sure that there is no further metastisis and go from there. i head back to work on tuesday, which is pretty good i think considering my surgery was Jan. 4th! good luck to those about to have theres! keep your head up!
steve
Jon
We do like to keep you entertained!!!
AngieXX
I hope this is helping all your research!
Wheres my bunch of red roses for being your first ever post!!???
Kim:
That was funny as hell!
But also I wish all the luck in the world for Peggy, she will be doing just fine.
Woops! Brain cramp! I meant to write to Peggy!
Kim thanks but its not me, Ive been “done and dusted”!!!!
Glad to hear you are doing well tho!
All the best
Angie
Angie! Good luck and I will be thinking of you. Sounds like you’re in the best of hands and we all will be thrilled to hear from you when you’re ready. As a friend said to me in September: Be a patient patient!
Best wishes, Kim
Phil
Nice to hear from you again and I hope susie is doing well, It would be interesting to compare our experiences over the last year and how she feels now!
Angie
Peggy
A wish you all the luck in the world and will be thinking of you!
You will be a new person!
It was a year last week since my surgery and I still cant believe the difference in my health and ‘lack’ of symptoms that had become a way of life for so long.
All the best and post back when you can….
All my love Angie
Hi All,
I’m going in tomorrow for a 7:30 surgery. I sure would appreciate anyones prayers. Hard to believe after 15 years things will be different.
🙂
Hi Rebecca,
I did have breakfast first so I felt o.k. going in, but it did not take that long for my sugar to fall. I guess it depends on how active your insulinoma is. How low do you get and how quickly do you drop? As Laura said, they are checking your proinsulin compared to your sugar. If your sugar is pretty low and your insulin is still high, then insulinoma! Depending on your hospital, I agree that you’re safer having your own monitor as well. I dropped a lot faster than they expected. Good luck.
Peggy
Rebecca, the 72 hour fast is nothing to worry about. besides all the blood draws, it is relatively painless:) Mine lasted about 2 hours total. What happens is you do not have breakfast (have someone drive you to the doctor or take a cab), then when you get there they draw blood and I checked my blood on my meter. Then you wait an hour and you check your blood again, then you wait an hour and you check your blood again. Assuming it continues to fall, the test is over and you are done as by then you are usually so low that they do not feel they can safely continue. The only reason my doctor did the blood draws instead of relying soleyly on my meter was to check proinsulin levels (that will tell them if you manually injected yourself with insulin to get attention) and to verify the accuracy of my meter. If you eat before you go in, the test will just take a lot longer as the food will raise your sugar. If you read other posts above, you will see lots of other people’s experiences listed to compare. Good luck!
Laura
Rebecca,
My wife did a few 72-hour glucose fasts and had surgery last year to remove an insulinoma from the head of her pancreas. You should definitely NOT eat breakfast that morning – your system should be fasted as much as possible when you go in (meaning nothing to eat after you go to sleep the night before).
What happens is that you go into the hospital and your blood sugar level needs to drop to the point at which you become symptomatic (usually between 20 – 30). The nurses then will draw blood sample at THAT time and send it to a lab for testing. If your insulin, pro-insulin and c-peptide levels are up at the same time your blood glucose level is down, this is the chemistry “triad” that indicates the existence of an insulinoma. The reason it is called a 72-hour fast and is under medical supervision is that it sometimes takes people as long as 72 hours to get that the point where their blood sugar gets to the level at which they are symptomatic. I can tell you from my wife’s experience it doesn’t take nearly that long (in her case, a little over 12 hours, probably not even that long). Also, it is done under medical supervision because it may very well be too dangerous to do on an outpatient basis. The nurses will take your blood glucose readings periodically throughout the entire fast. Whatever you do, don’t let them take you off of it too soon, or else the blood chemistry results may not be accurate! You don’t want to have to go through it another time because that happened!
I hope that answers your questions – I don’t have what you probably have, but have enough knowledge about it from my wife’s condition to “be dangerous”!
Phil
Hi Richard,
I had the op to remove an insulinoma and another tumour plus lots of pancreas in Birmingham, England last May and I too couldn’t eat properly for a very, very long time. I am better now than I have been for years. Everyone has noticed the difference; no more becoming semi conscious at work or talking drivel and getting extremely confused at home and at work. What a strange illness! I’ve been following the messages left here since then and I have to say I can see the the NHS is alive and kicking with some great expertise around. Lucky us!
Jane
Richard,
Congrats on the surgery! glad everything went well.
Hi, well I finally had my Insulinoma removed on the 12th December 2007. I was starved for 4 days post op and just given fluid via an IV drip. This was to test that the procedure had cured me of a low blood glucose level. Fortunately all seemed well, so I was given the go ahead to start eating and drinking as normal. However I had no appetite and no urge to drink. Nearly 2 months later and I’ve only just started to eat and drink as I used to be able to, although in the process I’ve managed to lose about 28 pounds in weight. I needed to lose weight anyway.
There were a few other complications in Kings College Hospital though, mainly involving an abscess on my liver, which meant that an 8 day stay after the op, was extended to nearly 5 weeks.
I cannot thank my surgeon, a Mr Klaus-Martin Schulte, enough for giving me back my life.
He’s a remarkable and very skilled man with a very comforting and friendly attitude.
Hi. I am going in on Monday for the 72-hr fast. I have some concerns because this is the first time my dr. has conducted the test for insulinoma. He first told me to eat breakfast before I come in, and then he called me today and told me not to. In my opinion, this is going to make a big difference in the way I respond to the test. Also, is the first blood draw supposed to take place at the beginning of the fast? Can anyone tell me what the standard procedure is? I want to make sure I am going down the correct path here.
I’m so glad I found this site. You guys are certainly an inspiration regardless of my outcome.
Thank you,
Rebecca
Steve, I lost a fair amount of weight in the weeks after surgery. I just wasn’t hungry and couldn’t handle much. With the holidays over and the heart of winter upon us (I live in VT), my appetite has rebounded! So give it time. I actually preferred it the other way!
Penny, thanks for your input. So glad to hear you’re doing well and I think what you mentioned is exactly the kind of thing I am talking about.
Peggy- it looks like it was malignant because they found a second primary tumor in the duodenum when they sent it to pathology. the great news thought is that my liver looks great so no mets there! and they want me to do PRRT treatment for the microscopic stuff.
Kim, thanks! its a slow recovery but hey! could be worse!
so anywone have trouble eating after the surgery ? any suggestions? it seems to be getting better but S L O W! also, this being of work stuff is BORING!! LOL
Hello Everyone!
It is so great to hear all of your stories and updates. To those of you who have just had or are about to have surgeries, please keep updating us! I really enjoy reading your posts. I am now over 6 months post-op and doing really well, feel normal, like nothing had ever happened to me. And I don’t know if this is what you are talking about, Kim, but I remember being nervous about exercising again (because when I had the tumor, exercise would cause my blood sugar to drop RAPIDLY). So doing a workout was a bit nervewracking after my surgery…i had to take my blood sugar during and after the workout just to “make sure” 🙂 but my nervousness went away after a few times. Yes, I do think with time the anxiety will pass.
Penny
Hello all
Peggy, CONGRATULATIONS! Such great news at long last. I don’t know how you have survived with this condition for so long. A year was plenty long enough for me! Keep us posted and GOOD LUCK!
Steve, So glad to hear you are done with surgery and recovering well
Homa, I am wondering how your surgery went. I hope all is well an that you are on the road to recovery also
I can’t believe my surgery was 4 months ago. It all seems like a dream. Have been feeling great but the permanent stitches are poking up and irritating so I will get those taken out in a week. The scar is healing well – my daughter calls it my shark bite! Life is back to normal for the most part although i do have a wee bit of anxiety around doing things that previously caused a major episode. i’m sure that will pass with time. I wonder if anyone else has this experience.
Take care everyone,
Kim
Hello everyone,
I hope you are all doing well.
Steve, I’m glad you are home and doing well. Was the tumor they removed definitely malignant?
I have a surgery date! February 13th. I’m mostly anxious but a little nervous.
I can’t remember anymore who had it done laparascopically, but I would like to know how it went for those who did.
Wendy, I do remember they attempted yours that way but had to go in. Did they think they could have saved the pancreas initially?
Mostly I’m curious about pain management for laparascopic procedures.
Hey all
Thanks for the responses. i am finally back home in alasak. let me tell you that was one heck of a trip home…no fun at all! other than that, things are going as hoped. i am trying to eat a bit more, but that is the hardest part. i am still really tired but hey this was no small surgery! LOL Hey Susan, i saw Dr. Wilkerson on Sat. because Howe was at his kids hockey game. he seemed nice. i also saw a couple of other surgeons while he was out. but dont remember names….i was kinda druged up! anway. hope all is well with everyone. Homa, good luck!
Homa
Hi everyone
I just wanted to let you all know that I am going to Houston for surgery tomorrow. The surgery is scheduled for Wed Jan 16th. I went for the calcium angiogram last week and the test went well. I will get the results on Tuesday when I meet with Dr. Evans. At that time he will tell me the whereabouts of the tumor. The good news is that I do not have MEN-1, but I still may have multiple insulinomas. I am scheduled for a ten hour procedure which will include having surgery for my hernia at the same time. Due to this, I am looking at a more extensive recovery period. Wish me luck. I will post as soon as I am able to. Talk to you guys soon.
Homa
Susan,
I will be there on Friday the 18th. Wouldn’t that have been funny if we both would have been there on the same day.
Maggie
What day will you be at the U of I Mag? I’ll be there next Monday the 14th.
Susan
Hi Steve,
I am happy to hear that you are doing well. I will be heading to U of I next week for my 6 month post op appointment. Take it easy.
Peggy,
No they didn’t end up having to take my spleen. I think that is why it took so long because they wanted to be able to keep it. I am glad to hear that they found your tumor. I was definitely lucky that they were able to find my tumor so quickly. I was diagnosed in the end of May and had surgery in the end of June after numerous CT scans which showed nothing and an endoscopic ultrasound in which they were able to find it. Have they scheduled your surgery yet??
Mag
Hi Steve,
Glad to hear you’re doing well and are happy at the U of I. Glad to hear that you’re up and around. I have my 6 month post surgery follow-up appointment with Dr. Wilkinson on the 14th. Let us know how everything went when you’re up to it.
well, I am 5 days out and doing well so far. i am a bit sore, but i am now eating liquids and they will remove my epideral and catheder tomorrow. i was very impressed with Dr. Howe and his entire staff! they continue to treat us very well! i am a bit tired, so i will keep this short, bt i will post a more lenghty reply later on.
steve
Hey guys,
well, the big day is tommorow for me! i met with the surgeon yesterday, and the tumor looks like it is in a pretty good place as it appears there is some space between the tumor and the arterys, so that is good! anyway, i will keep you all posted! thanks so much for all help!
Steve
Homa, one more thing, the staff at MD Anderson is excellent, they seem genuinely concerned about your comfort and well being. The only problemwith the staff I had is that the pharmacy is slow. When you need a certain medication if the nurses don’t have it on hand they have to order it from the pharmacy and you could be waiting 2 hours. The nurses themeselves say its a problem. I had to wait 2 hours for pain medicine soon after the surgery as my epidural started wearing off on one side of my body. My mother got irrate with the nursing staff but there was nothing they could do.Hopefully you won’t have this problem. My advice to you is if there is any medication you think you need take this into consideration.
Homa that is fabulous news! I did not do the calcium test as my tumor showed up clearly with the spiral CT scan. If Dr. Evans is handling your case I am convinced you are in the best hands possible. I am not going to lie to you I had a horrible time after the surgery with gas, constipation and cramping so bad I thought I would rip in two. I took laxatives, and whatever gas meds they would give me to no avail. I had horrible gas and cramping still for about several months after the surgery, it finally went away on its own. Also after the surgery my whole body swole up really bad and they had to put a tube down my throat into my stomach to release the trapped fluids. I had this for about 5 days. I don’t think its typical. Oh and one word:popcycles!! That is the only thing you will be able to eat for several days afterward but they keep a good supply of them in the break room area so hopefully you have someone going with you that can fetch popcycles for you. I was probably eating about 10 a day!I was in the hospital 2 weeks I think after the surgery. I drove home as I’m in New Orleans. It wasn’t bad. Like I said I had horrible gas pains for months but I’d absolutley go through the whole thing again as I feel wonderful now and it was SOOO worth it!
Hello everyone
I just wanted to give you guys an update on what was going on with me. They finally scheduled my surgery for January 16th at MD Anderson in Houseton. I am going there next week for preop appointments with the doctors and do the last set of tests. After the biojpsy which was positive for insulinoma, they decided not to do the 72 hour fasting again. There would have been no sense in doing that again. I will get the calcium angiogram done next week too. I guess they want to do all the diagnositc tests to better help localize the tumor. it is located at the head of the pancreas. I will find out more about it next week. I will be having two surgeries at one time. I have developed an incisional hernia from my last unsuccessfull surgery for insulonoma last year. I have a huge buldge in my belly. I look like I am four month pregnant. right now the hernia is bothering me more than the insulinoma. I have no evergy and I can not lift anything heavy and it is just uncomfortable. I can not wait to get it over with. I will be a whole new person. in more ways than one. I had planned on getting married on december 29th, but we had to postpone the wedding until this spring due to surgery. As susan had said it, I probably need to go buy a new dress, lol.
Peggy
Congradulations. I am so happy for you. I was thinking about you the other day and prayed that they would be able to localize your tomor soon. You have been dealing with this for a very long time and I am thrilled to hear that they were able to find it. You and I are the oldest members of this site who have not had surgery yet, but our time is coming. Have they set a date for surgery?
Penny
Thanks for thinking of me. I am just counting the days to be done with all of this. I am anxious and nervous and excitied. I keep having nightmares for some odd reason about surgery. I guess after going through a previous surgery, I am a little scared of what could happen, but I am in good hands. How are you feeling?
Lauren
I am finally set to go for surgery. I have a question. I guess this is a question for anyone who had done this test. Did you have to do the calcium angiogram? They have me scheduled to do an MRI immidiately right after the calcium angiogram and right after that I have an appointment with a doctor and I got to fly back home that afternoon. I am worried if I will be able to go through all of that after that test. How intrusive is it. I think I remember reading you have to lay down for two to three hours afterwards. I am just worried about being able to catch my flight that afternoon.
I am meeting with Dr. Evens again next week. I am also meeting a plastic surgon who is going to work on the hernia after Dr. Evens gets done with his surgery. Dr. Evens told me last time that the whole thing would probably take about six to seven hours. How long did you stay in the shospital and how was the flight back home. I have two and a half hour flight to look forward to after the surgery. since you did your surgery there, any infor that you could give me would be greatly appreciated and would give me some sense of comfort
Thank you Angi, Aileen and kim for your well wishes. I am sorry I was not able to respond back sooner. Kim, I still do not know if i have MEN 1 or not. I figured it it was positive they would have told me by now. LIke you said, the other stuff that is showning on the CT could be something else. Knowing that you guys are here and you know how it feels to go through all of this means a lot
Good luck with your surgery steve and keep us posted
Wishing everyone a happy and healthy new year
Homa
Peggy
This is fantastic for you at last! Its ridiculous how long and how much you have suffered waiting for this! Wish you all the best and im sure now you are on the home run!!
Wendy
Glad to hear your surgery went well.
I didnt know Hammersmith was the ‘centre of excellence’ for insulinomas as Barts and the Royal London also treat people from all over the Uk with insulinoma. With insulinoma being so rare many hospitals do not have the facilities to identify and deal with the symptoms properly.
Certainly London hospitals are the place to be and thank goodness I was lucky enough to be local and not have to travel hours for appointments and people were close enough to visit.
Who was your consultant and surgeon? Mr Bhattacharya was my surgeon, he is supposed to be the top man for insulinoma (he has done about 35 which is a lot for how rare it is) and works closely with the team at Barts where I had my preliminary tests and scans.
My tumor was in the head and I was possibly up for a whipple but luckily that didnt happen – Im coming up for a year in february and Im going to be celebrating!
All the best to everyone and happy healthy new year to all!
Angie
Dear All,
Just to let you know that I am now 11 days post surgery and am doing well, hope that that reassures some of you I am up and mobile and moving around more and more each day. I spent 5 days in hospital. They removed an insulinoma which was 1cm in size from the posterior tail part of the pancreas next to the splenic arteries. Although I had to sign consent to remove the tail part of the pancreas and the spleen my surgeons were very careful and competent and managed to do 60% of the op laparoscopically and then had to open me up when it was a bit tricky but by doing this and being careful they saved the tail of the pancreas and the spleen which I am very grateful for. The operation lasted for 7hrs. They have been excellent at the hospital in Hammersmith and I would recommend this hospital to anyone as it is the centre of excellence for this condition and they treat insulinoma patients from all over the uk. I have been undergoing tests since July and finally had it removed on December 18th but was home in time to be with my kids for Christmas. Although still convalescing and a bit sore already I note how different and more energetic I feel and how I dont have to eat all the time! Wishing all of you the best of luck with forthcoming surgery and you really will feel a changed person afterwards I promise.
Peggy,
Congrats on finding the tumor! yeah, i am next up! i leave for U. of Iowa on sunday and i ma scheduled for surgery on the 4th! as for Insulinomas being malignant, it is rare, but does happen i guess in 10 percent of em from what i have read. they found mine originally in the lymph nodes and thought it was a recurrance of my hodgkins Lymphoma until they did the laperotomy to biopsy the lymph nodes. i hope they find that they are just inflamed and nothing more!! Good luck, i will keep you all posted!
STEve
Peggy!
THAT IS MAGNIFICENT!!!! I am sooooo happy for you. 🙂 🙂 🙂 hip hip hurray! I am so glad that it was found. Have you scheduled a surgery date?
Homa,
Are there any updates on your end? I’ve been wondering how you are doing.
-Penny
The lowest I’ve tested myself at has been mid-70s; given that I’d never tested my blood sugar prior to this delightful couple of years, I have no idea what should be considered normal. The idea at this point is, essentially, to see if it gets worse over time, but it’s so variable that it’s hard to really feel like it’s a definitive solution to the problem. Basically, it sounds like I’ll have to live with the uncertainty (which is better than the certainty of malignancy, of course).
Hello everyone!
Guess what my best Christmas present was…THEY FOUND MY TUMOR! Can you believe it? It took a few days for me to believe it since they’ve been looking for…15 YEARS!
So, for anyone out there that hasn’t been diagnosed yet,(Simon) don’t get discouraged, just go somewhere else! I have had multiple MRI’s, CT’s endoscopy’s and an angiogram that showed nothing. My insurance finally approved USC to do the CT which found the tumor. (Maybe they got tired of paying the paramedic, and ambulance bills) My doctor said their machine is better but he thinks it’s their technique that makes a difference. Something about how fast they push the contrast through. The last MRI was only a few months ago. The tumor is 1 cm, so it’s not the size that kept the other tests from revealing it. Now, because of how big it has become and it’s location on the tail, they will probably have to take part of the pancreas as well as the spleen. I’m not looking forward to a possibility of becomming diabetic, but I am thankful it’s finally found.
Mag,
8 hours, wow! Did they remove your spleen?
Richard,
Have you had the surgery? Hope it went well. There’s nothing worse than being on another planet!
Susan,
How is your mom doing?
Steve,
I guess you’re the next one due for surgery. I know how hard it must be, but you have such a great attitude! A zipper tattoo, that’s hillarious. When they did my endoscopy they found my lymph nodes to be enflamed..guess I’ll take NS advice and look into that! I asked my doctor if left untreated, an insulinoma could turn malignant. He admitted they just don’t know.
Brendan,
How have your levels been?
Simon, I had my surgery at the University of Chicago, Dr. Matthews is amazing! Where did you have your other tests performed? As many other people have noted, an MRI is not an MRI, it really does depend on the quality and the technician. According to Northwestern I had no tumor. I went to U of C and there it was. I think going there is a step in the right direction. Good luck!
Laura
Mag,
Thanks, I will keep you guys posted! i am scheduled for surgery on the 4th of Jan. so we are flying down on the 31st of dec. they said i should be able to fly after about 10 days…..im a bit nervous about that though, its a long ride home!
steve
Hi Steve,
You will have to keep us posted and let us know how everything goes. You are definately in good hands. Any idea when you will have surgery??
Mag
Simon
Reading your post your life is certainly on a downer – however being diagnosed is the major problem and now you should be on the way to having an op and coming out the other side. Believe me the change is fantastic. My life is so different and the symptoms non existent now!
I cant believe how ill i was and how different things are now! Try not to be so depressed easy to say I know but there really is a life after surgery!!!!
Just a note to anyone else who has had the surgery – My hair on my head has really thickened up since the op and has gone curly when I have always had straight hair… I imagine it is similar to people who have had chemo lost their hair then it has regrown! It had gone very thin and I had no idea what was cause it until they found my insulinoma! Funny how things are!!!
Best wishes to all…..
Angie
It would be helpful if in referring to MRIs, information on the make and Tesla of the machine on which the tests were done, is also given. Recently I became aware of differences in capabilities of 1.5 Tesla machine vs. 3.0 Tesla. Even if the machines are equal, I have also found that the results depend on the skill of the MRI radiologist. Everyone, please bear this in mind and do not jump to your own conclusions. Recently an endocrinologist sent a patient post haste to a cadiologist for a pre-surgery clearance, the clearance was obtained and the patient then saw the Surgeon, who found that there was nothing to operate on, explained away the situation as due to inexperienced radiologist in the Hospital! So much suspense, so much agony,…
Mag,
its great that the surgery went well! i am curious if they are going to do a horizontal cut on me or just go back in where they did the biopsy (which was a laperotomy and was vertical from about mid to upper stomach to just below my belly button…) i kinda hope they go back in the same way…i want to get a zipper tattoo at the top of it when it heals! LOL Thanks again for the info! it definately helps put my mind at ease!
steve
Hi all.
Can anyone tell me what the next step would be after the 72 hour fast? as it has proven inconclusive,
Chris
I’m 24 years old, male, and was diagnosed with an insulinoma two months ago. Since then I had a CT scan, MRI, and endoscopic ultrasound. None of the tests showed that there is an insulinoma but the doctors are saying it must be a small one. Now they are telling me the next step will be an angiogram, so I’m going to the University of Chicago hospital soon.
My symptoms started a couple years ago but I always thought it was just a bad diet, so I stopped drinking sodas and just stuck with water (I drank A LOT of soda). I only weighed 130 pounds at the time. Then I had problems with my metabolism, and it turned out I had hyperthyroid so I took medicine for that for a year and it went away so I got off the meds. I quickly gained 30 pounds once my thyroid was working properly. Two years ago I experienced a grand mal seizure after a day of doing a lot of outdoor work (digging). I was at a hospital for two days and they did numerous test on me (EEG, MRI, catscan) and they could not find what the problem was. I do recall not eating much that day. Now, two years later, I weigh 190 lbs, and I have to eat snacks every couple of hours or I start feeling dizzy. In August I had another grand mal seizure while at a restaurant. My friends and I were waiting for our food and the next thing I remember I woke up staring at the ceiling of an ambulance and the paramedic asking me questions. Supposedly it took 6 people to hold me down because I was struggling so much when I was in shock after the seizure. So I went to my endocrinologist and had a fasting test done, after 6 hours I was feeling dizzy, I wasn’t speaking as clearly as usual, and they tested my blood and concluded that I must have an insulinoma. Now I can’t drive any motor vehicle for six months because of my seizures, and I have no social life right now which is pretty hard. Even with health insurance my bills are stacking up and it’s so depressing. I hope everything turns out as well for me as it has for others here.
Susan,
My surgery went very well, but it took 8 hours. Apparently my tumor was sharing a major blood vessel with my spleen so they had to be very careful. I have a horizontal incision about 8 inches across my mid stomach area. They were not able to take just the tumor, they had to take about half of my pancreas. I was in the hospital for 13 days after the surgery. It would have been much shorter, but I got pneumonia and and spiked a high fever the day before I was supposed to go home. I am doing well, but I still have some abdominal pain at times. I don’t have another appointment until Jan. so I will talk to my dr. then. I still don’t feel completely 100% but I am definitely getting there. I was very lucky that my local Dr.’s were able to diagnose me so quickly. Everything started towards the end of May of and I was able to have my surgery during the last part of June. I am a teacher so I didn’t have to go back to work until September which worked out great. I hope everyone is doing well.
Mag
Hey Mag and Susan!
that is weird! the good news is so far we have all had good experiences there!!i am curious as to whay type of surgery you had as well mag. thanks for posting!
steve
Mag,
Wow, this is something! When I first met Dr. Wilkinson he told me they only see 2-3 insulinoma per year. I’m guessing that number has gone up. Tell me about your insulinoma experience.What kind of surgery did you have and how are you doing now?
Susan
Susan and Steve,
I have been reading the posts on this site for a few months now and finally decided to post. I had an insulinoma removed on June 20th at the University of Iowa as well. I was very impressed with everyone there. I know Dr. Howe, but Dr. Suggs was my Dr. Isn’t that odd that three of us have all went there seeing it is so rare? I was so glad to find a site where other people have gone through the same things. It has really helped me.
Mag
Susan,
thanks for the info! i have been very pleased as well from our initial visit with everone at UI.! I do have insulinoma, and i have heard mixed views on weather it is “malignant”. it has metastisised to the lymph nodes, so between that and the size of it, it appears it could be. when i asked, i was told it is hard to stage em, but that it should be taken out. i am confident in their abilities (which i guess is a good thing seeing as how they are going to gut me! LOL). It also appears that i may Have MEN1 because i also have Hyperparathyroidism, so that is another peice of the puzzle. but everything i have read points to surgery regardless. thanks again for the help! i will keep you updated! Happy holidays!
Steve
Hi Steve,
My surgeon was Dr. Wilkinson and the resident surgeon who worked closely with him was Dr. Nowell. They are both excellent doctors. I think I did meet Dr. Howe during my hospital stay and do remember seeing him around but really don’t know anything about him. I found the following link.
http://www.uihealthcare.com/depts/cancercenter/healthprofessionals/neuroendocrine.html
The entire staff that I came into contact with were great and I received excellent care. You should definitely feel that you are in good hands. I’m sorry that your tumor appears to be malignant. Is it an insulinoma?
Please keep me updated and let me know if you have any further questions. You can also email me at gjmielke@mchsi.com if you’d like.
Susan!!
I have not posted in a while, but i noticed you went to U. of Iowa for surgery! I just met with Dr. O’Dorisio down there and i am scheduled for surgery on Jan. 4th. was your surgeon Dr. Howe? if so, how did you like him? seems my tumor is at the head of the Pancreas, so it looks like i will have a whipple. but i am just glad that they are going to get it out of there since it appears that it is somewhat malignant since it has metastisised to my lymph nodes. Thanks in advance for any info! congrats on things going well!
Steve
Susan!!
I have not posted in a while, but i noticed you went to U. of Iowa for surgery! I just met with Dr. O’Dorisio down there and i am scheduled for surgery on Jan. 4th. was your surgeon Dr. Howe? if so, how did you like him? seems my tumor is at the head of the Pancreas, so it looks like i will have a whipple. but i am just glad that they are going to get it out of there since it appears that it is somewhat malignant since it has metastisised to my lymph nodes. Thanks in advance for any info! congrats on things going well!
Steve
Best of luck to you, Richard! My mother went through all of that and thinks the testing was worse than the surgery. But it is all more than worth it. She is two weeks post op and has lost over 14 pounds so far. It is odd, though, because everything is topsy turvy. Tomorrow for Thanksgiving, instead of eating plenty of potatoes, stuffing, cranberry sauce and pie, she will be watching her carbs as her blood sugar tends to be a bit high now.
Be sure to reread all the entries here. They are most helpful.
Susan
Hi all,
Since last writing I’ve been in to Kings College Hospital in London and had the 72 hour fast followed by a CT scan.
The 72 hour fast lasted 19 hours. It would have been shorter but the lab took 2 hours to bring the results back from the blood test before they could take another blood sample and then end the fast. Boy am I glad I don’t have to go thru that again. I’d assumed I was going to be sitting there watching TV, waiting for the sugar level to drop, they’d take a sample of blood and then another sample 30 minutes later and that would be it. Nobody told me I’d be on another planet and really uncomfortable. I really, really didn’t enjoy that. The CT scan proved inconclusive but the MRI I had done at the end of Sept this year along with the blood results taken last week have proved that the insulinoma is in there. I’m hopefully having surgery in the early part of December (next month). I really can’t wait to get this thing out of me now so I can start living again.
The staff at Kings College have been fantastic, especially Dr Aylwin who has done just about everything possible to reassure me and make the journey towards surgery all the more bearable.
Good luck to all.
Richard
I had my insulinoma removed in July and my surgeon would also like me to have a CT done 6 months post op. He has also requested that I have the CT in his hopital’s lab rather than at home. I did have problems with my drainage tube after surgery and did have what her referred to as a small “ball” of fluid in my abdomen. He spotted this because of the CT I had 3 weeks post op. I guess I haven’t questioned him as to exactly why he would like another CT scan but assume it’s just to take another peek at my abdomen area. I also will also feel relieved after this CT if he tells me everything looks great.
My sugar levels are staying around 110-120 after fasting post op. I am also am battling hyperthyroidism. I received the radioactive iodine treatment a week ago. My Endo feels that my overactive thyroid may be keep my sugar levels higher. Hopefully once the thyroid problem is taken care of my sugar levels will drop down a bit.
Other than this I feel great. I’ve lost the 30 lbs I had put on while I had the insulinoma. I can now eat just 3 times a day rather than all day long.
Brendan,
Seriously?! It’s unbelievable that your sugar level is low again. You, I think, were the first on our blog to have had the surgery. Hopefully your hypoglycemic levels were due to something common like an over indulgence in sweets maybe? How were the insulin levels? I will be praying that it is not due to a malignancy! Please keep us informed.
Peggy
Angelique – Thanks for your response. Seeing if other organs and the pancreas are in working order makes sense.
Brendan – No need to apologize! I’m sure my writing was not very clear! I hope that the low numbers are just a fluke. Keep us posted. I don’t know exactly what they are looking for – they haven’t been able to give me a reason. My gut feeling is jthat it is ust to cover themselves, which I understand. I am duly warned but I still do not want another scan unless there is good reason to have it done!
Kim – my apologies. Apparently my reading comprehension sucks. I’d like to blame it on the lack of threaded conversations on the site, but really, it’s just a lack of mental acuity. 😉
I’m 18 months post-operative, and I’ve had regular blood panels as follow-ups, but no additional CT scans or MRIs. I did have a surprisingly low result on my last screen, so I’m now being checked more frequently in case of reoccurence (which would apparently imply malignancy, unfortunately). Still, they’re not going to order more scans unless my numbers continue to drop. Were they concerned that the tumor might spread?
Kim – my apologies. Apparently my reading comprehension sucks. I’d like to blame it on the lack of threaded conversations on the site, but really, it’s just a lack of mental acuity. 😉
I’m 18 months post-operative, and I’ve had regular blood panels as follow-ups, but no additional CT scans or MRIs. I did have a surprisingly low result on my last screen, so I’m now being checked more frequently in case of reoccurence (which would apparently imply malignancy, unfortunately). Still, they’re not going to order more scans unless my numbers continue to drop. Were they concerned that the tumor might spread?
Hi everyone!
Kim: I had my surgery 4 years ago – I was in a pretty bad way after as it was on the neck of the pancreas and spent long hours in surgery. I have been followed up yearly with CT scans. My last Ct was last November. Originally, my scans were done post surgery to check everything else was in working order as I had a laparotomy to remove the insulinoma and most of the pancreas. I guess they also check if there are any more suspicious tumors. Before surgery, Ultra sound and CT scans confirmed I had a slightly inflamed pancreas and liver. i never questioned why, I just had them done.
Brendan –
Thanks for your reply. I think there’s a misunderstanding perhaps, I’ve already had my insulinoma taken out. The surgeon wants to do post-surgery follow-up CT scan. He said I could have it done here near where I live but the scan here is not very “strong”. I don’t know what he woulld be looking for and whether it would show anything, hence my hesitation.
Thanks, Kim
Kim,
There’re multiple types of CT scan – could it be that he wants to do a follow-up trying a different methodology? The radiologist didn’t see mine with CT, but they did find it on an MRI – of course, the surgeon was able to see it on both. You’re somewhat at the mercy of the radiologist since they’re the ones who actually interpret the imaging. Given that insulinomas are rare, they don’t see them with much frequency.
Here’s a section of this journal article describing the efficacy of various techniques:
http://www.indianjgastro.com/article.asp?issn=0254-8860;year=2006;volume=25;issue=5;spage=244;epage=247;aulast=Jyotsna
“In this study, conventional CT successfully localized the tumor in 33%, single-slice helical CT in 58%, multi-detector CT in 100%, MRI in 85% and angiography in 65%,and a combination of available methods achieved a sensitivity rate of 88%. In general, trans-abdominal US and conventional CT perform poorly. As in other studies, our data show that if dual-phase CT does not identify a lesion, conventional MRI is unlikely to be of additional help. As compared to the conventional technique, MRI with special fat-suppression sequences during breath holding has a high sensitivity; this however needs special expertise. Endoscopic ultrasonography and arterial calcium stimulation and venous sampling (ASVS) have been reported to have a sensitivity of 96% in localizing insulinomas; [however, we do not have facilities for these.”
Perhaps you could enquire as to whether it was conventional or dual-phase that they used previously?
Brendan
Hello all – If any of you out there who have already had surgery are still with us I have a question. My surgeon wants me to have a follow up CT scan. I am not crazy about the idea for several reasons. I feel as though I’ve had enough scans to last a lifetime already! He does not seem to be able to offer a compelling reason to have the CT scan. And, since the regular CT scan did not pick up anything initially and the high octane scan was not completely conclusive, I wonder what the point is, whether it would show anything anyways (I am not even sure what they’re looking for). Thanks, Kim
I fully sympathize with you. After similar experience, nowadays I have started insisting on getting a copy of the written report of the Radiologist. I have also found that the Doctors do not tell you during your OV all that the Radiologist says in his report. The trouble is that you do not have your Report in your hands at the time of the OV to ask followup questions. The Doctors shove you out before you can ask the questions. They do not keep open email communications with the patient. You have to go thru hard-pressed OV apointment-assistants.
Also try to get your own copy of the disk that follows tests.
Afterwards, insist on getting a FINAL Report from the Radiologist, Endocrinlogist etc. You have to safequard yourself from the Doctors, almost.
Hi Lauren!
Thanks for the pep-talk! It made me feel much better! 🙂 I am actually annoyed with my current Endo now.
Here’s why. . .
I have fibromyalgia and I am seeing a Rheumatologist for it. He’s been the most concerned and supportive doctor I’ve had during this ordeal. Anyways, he wanted to see the results of any imaging tests I had performed, so I asked that my CT/US report be faxed to me so I could give him copy. My endo DIDN’T tell me everything the tests showed.
Yes, I have fatty infiltration in my liver; quite severe. But I also have a fat-filled umbilical hernia, (no biggy), a 6cm mass attached to the left lobe of my liver; and another mass which cannot be identified. Aside from the fatty liver, the radiologist recommended that the masses should be taken seriously, since she couldn’t tell if they were benign or not. But when I asked my Endo about it, he told me that he simply “forgot” to tell me. . . even though he was looking at the report when I saw him.
*Sigh* What a pain. :/
Elizabeth don’t be discouaged I had an extensive MRI done at my local hospital and it showed nothing. It wasn’t until I went to a pancreatic specialist at MD Anderson that they found mine with a CTscan and mine was one of the larger ones-1.9 cm. Lauren