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.
Hi Steve,
Any mood swings??? Every time I start to cry I just go get a drink of milk and then I’m fine…for about an hour!
Most typical symptoms have dissapeared with the duration of the disease, like irratibility. But low sugar still messes me up mentally and emotionally.
Hey peggy
i had lymphoma two years ago to the day they found the enlarged lymphnodes that turned out to be insulinoma. i am not sure how long i had it before is was Dx’ed, but i went through 6 months of CHemo, and things were clean…..yeah, my luck is great!! thanks again for responding!
so everyone, what were your symptoms? i personally dont think i have many other than the occasional hypoglycemic episode where my blood sugar plummits to like 50 or less and i need to eat like 3 PB and J’s to start feeling better!
any mood swings? just curious because it seems i have had a short fuse lately, but htat could also just be stress!! (i dont have ANY idea why that could be!LOL)
Penny
I was in hospital for two weeks in the end. The first few days after surgery you really dont want to do anything. I had a lot of visitors and watched the television. Although Im a really big reader I actually found that I didnt want to read a book, I think my concentration wasnt up to much. I did read and flick through loads of magazines.
As I was in a ward of 12 women, (NHS) some of us were quite sociable. As soon as each of us was up and around after our respective ops we would walk to the lunch room together – avoiding the physios that hung around who were waiting to pounce on those who didnt move around enough for their liking!
With the hospital regime of obs, medication, breakfast, blood tests, washing, visitors, medication, obs, lunch, afternoon nap, visitors, dinner oh yes obs and medication, washing, medication, obs and sleep it was quite busy!
I did spend time “milking” my catheter – it didnt always flow so it helped to pass the time, I would have missed the TV tho if I hadnt had one, I could just chill out with some soap or other!
When you get bored you are ready to come home!
I made a couple of friends in the ward who I still see, in fact we met last week to compare scars – mental and physical!
Good luck Im sure youll be fine!
Angie
I check into the University of Iowa Hospital on Monday to start fasting for my Tuesday morning surgery. I’m scared but also very anxious to get this over with. I’m also looking forward to only eating when I’m hungry rather than every few hours. I’ve been very lucky with this whole thing though. Except for a dozen or so bad episodes, I’ve been able to keep my symptoms fairly mild as long as I eat regularly. I have gained about 25 pounds however which has been ok for me because I’m quite tall but am also anxious to shed a few pounds. I’m 49 years old and have been fairly active my entire life but have become some what lazy and depressed over this whole thing. I’m hopefully going to be my old self again very soon. 🙂
Thanks to everyone for all the information and encouraging words. I’m so glad I found this website. I will let you know how the surgery went once I am able to get to a computer.
Good luck to everyone!
Just a quick question, before I we leave for a few days~to those of you who had surgery, WHAT did you DO for all those days you were in the hospital?! I’m worried I’m going to be bored out of my mind. Any suggestions would be greatly appreciated! (thanks for the nice welcome notes peggy & lauren! hi steve! hi angie~your updates are definitely are encouraging!)
Penny
Hello,
I have recently found out that my pancreas is overproducing insulin. I dont know much about this and have been doing research on insulinoma. How hig were your numbers? I’m a little scared…I’m 37y.o. with 6 children and am in school to be a naturopathic doctor. I am going in on thursday to have my c-peptide levels checked.
Any info would be helpful.
Thanks,
liz
Peggy
When I had my calcium infusion test although I was down for just the liver and pancreas some of the staff were under the impression they would be doing a ‘whole body’. Thats when they check your whole system for insulin producing cells in case they have lodged somewhere else – it may be an idea to pursue that!
What a thought! has any of your doctors considered it may not be in your pancreas???????
Angie
Steve,
Wow! How long ago did you have lymphoma? I’ll bet you were glad to hear it was insulinoma. so, you are saying that they’ve found an insulinoma in the lymph glands? Can’t they just remove the lymph nodes if that is the case? I guess I’d better ask my doctors to start looking other places instead of just the pancreas.
Your odds are even less in being a male with insulinoma. Out of about 20 of us,we’ve only had one other male on this blog, Brendan.
I’m sorry you have to join us, but I guess it’s better than your Hodgkins Lymphoma being back. At least you can spend the month waiting it out with the rest of us.
yeah angie, i have some luck huh? LOL now why cant i win the lottery!!LOL nice to meet you!
Hi Steve
Glad to hear from you – its just us and the ferrets here!
So not satisfied with having Hodgkins Lymphoma, you are lucky enough to join us – odds being 4 in 250,000 for an insulinoma, what are the odds in having both?
Any questions ask away someone will help – its been brilliant!
Everyone
Ive just been signed off for a year! They dont want to see me unless I have any symptoms! Whoopieeee!
Everyone says how well I look and although tired I do feel Im getting there!!
So dont give up hope anyone (including Peggy!) and where ever you are with treatment or diagnosis it will be worth it in the end.
More later!
Love Angie
Welcome Penny, your life is about to get a whole lot easier, after your recovery of course. I have 2 small children as well and the hardest part has been keeping my 3 yr old off of my stomach. Even to stretch out a hand to block him from jumping on me was painful at first. I am surprised to hear you’re blood sugars dropped while you were pregnant. For me while I was pregnant was the only time in the last 20 years I felt normal because my sugars were normal while I was pregnant. My ob said most women’s sugars are higher when they are pregnant and many of them turn diabetic while pregnant. It just goes to show you the wide range of opinions doctors can give you. Anyway I hope you have a good support system at home, you will need it. Your husband has his work cut out for him!
Lauren
Hey guys,
I am new to the Insulinoma club! I was diagnosed this june after they had thought that my Hodgkins Lymphoma was back. They did a laperotomy and did a biopsy on the lymph nodes near the pancreas and that is what the pathology reports said.
at this time, my Oncologist and my surgeon are deciding what to do about it. i guess because it is in my lymph nodes, it will make it difficult to cut out. so now we are in a hurry up and wait pattern. they will do another CAT scan in another month to see if it is growing, and then it sounds like surgery time. but nothing is set in stone.
I thought that the only group of people i would find with Insulinoma would be ferrets (according to Google! LOL) thanks in advance for all of the info that you guys share! best wishes to you all!
Steve
Hi Penny!
I’m really glad you found us too! I know just how you feel, when I found this sight it was such a blessing, still is.
It’s great to feel as if everything you’re experiencing is normal, at least for some people.
So your surgery is July 11, the day after Susans. It sounds like you are going through the same thing as her, wanting to get it done. I can’t blame you. Her doctor gave her the percentages of the ways the surgery might turn out. I wouldn’t worry too much, most everyone’s surgery on this sight went extremely well, I’m sure yours will as well. You’re fortunate that your husband can be home with you, especially since you have little ones. I was only 32 when I first noticed symptoms, how different my life would’ve turned out if I had had the surgery back then. Maybe it will be a new life, if I ever get the surgery. Although I finally did get use to eating all the time, unfortunately!
Sorry you’ve had to go through this, but thanks for making our little on line club bigger. 🙂
Tone,
Thank you for letting us know how Laura is doing. I’m glad the surgery went well and I trust the recovery did as well.
Hopefully the hospital stay won’t be lengthy, I know how hard it is to be away from, and for the little ones. Give Laura our well wishes and please keep us posted on her recovery.
Leslie,
Are you still out there? I finally read your post, your mom needs to be checking her sugars regularly! If she’s seeing an endo and her sugar has been that low, I can’t understand why he wouldn’t be prescribing proglycem, as well as a monitor. My symptoms have definitely decreased with the duration of the disease. Your mom might not be able to recognize when she is getting low as well as she use to.
One of the first times my family called the paramedics to wake me up, was after an emotional experience. The scary thing was that a man I knew also could not be woken due to low blood sugar that same night. He went into a coma and never came out of it. Her sugars may not be low as often, nevertheless, calling twice a day really isn’t sufficient I’m sorry to be so forward, it’s just that we understand how dangerous this disease is and I wish there was someone there to help me back then.
Your mom is fortunate to have you to care for her. Hopefully she will see the benefits of surgery. At first I was opposed to the surgery, only because I thought I had learned to deal with disease. It took awhile for me to realize that having seizures meant that I did not have control of the problem. It won’t get better, it can only get worse.
From what I’ve read,the survival rate of the surgery was only low when they first began to do them. That is no longer the case. If they have actually found the tumor I would go for it! Do you know if it is on the head or tail?
I’m sure if they could do a laporoscopic procedure they would’ve told her.
Please let us know of any progress, all I know about number of procedures is from a doctor at UCI in CA. He said he’s done 50 himself. Good luck.
First of all~ yeah Tone & Laura! An enucleation is exactly what I am praying for!! I hope she is recovering well.
Hello EVERYONE!!!! Are you guys for real?!!! I am sitting here in awe, reading all of your comments. I have also been diagnosed with insulinoma and have felt so “alone” these past 2 1/2 years, not knowing you all were out there too! It is SO GOOD to hear you all talk about your low blood sugars and the struggles you’ve been through (although i wish none of us had this!)…
I am 30 years old and I first noticed I had a problem when I got pregnant with my daughter 2 1/2 years ago (although,now after experiencing all the symptoms of hypoglycemia so often these past few years,(too numerous to count) I can look back and see various times that I had low blood sugar as long as 13 years ago)…so, I was 6 weeks along and didn’t wake up one morning. My husband had to call an ambulance, and when I woke up in the ER, they said my blood sugar was at 14 ! The doctor there said not to worry much about it since I hadn’t had any blood sugar issues earlier in my life, just to eat more often. Well, then it happened again a week later~and i was at 19 that time. My family doctor and my OBgyn both said it was common for pregnant women to have lower blood sugars and to just eat more complex carbs and protein (I dont think they really believed I had gotten that low). So, I did just that and pretty much kept it under control by eating regularly although i never checked my blood sugars at all. Looking back at this time and at symptoms i had (at times: blurred vision, confusion, tingly tongue, nightsweats, lightheadedness, stressed/anxious, etc.), I KNOW I was living with very low blood sugar during most of my pregnancy. Then after i delivered my daughter, I figured since I wasn’t pregnant anymore I was back to normal, so one day after not eating for 4 hours I had another episode~ my husband came home to find me laying on the bed crying and all sweaty and non-responsive*luckily he was able to get me to sip orange juice and i became conscious again. But that is what got us thinking that i really had some sort of problem going on…
So, that’s what started 2 years of going to doctors and being extremely frustrated and gaining weight because I had (and still have) to eat every 1-2 hours, and wake up in the night to eat….I could go on and on about all that, but to make a VERY long story short, i finally found an endocrinologist an hour away that really started the ball rolling. Within a month of seeing her, I had various blood tests, an MRI and CAT scan (which didn’t show anything) and finally an Endoscopic Ultrasound which showed a tumor in the neck of my pancreas!!! I didn’t believe I would ever be so excited that a tumor was found in my body!
So, now I have surgery scheduled for July 11th. I am REALLY looking forward to getting this tumor out but I am REALLY nervous about what they may have to end up doing with my pancreas. This surgeon is at St. Joseph Mercy Hospital in Ann Arbor, MI and is supposed to be good from what I hear, but he doesn’t necessarily specialize in removing insulinomas…has removed a few gastrinomas and various neuroendocrine tumors and has done many pancreatic surgeries in itself…so I guess I should trust in it (or moreso trust in God that everything will be ok) and stop second-guessing. I have a 2 yr. old and 5 month old and my husband is home for the summer, so the timing of the surgery is good for us and if I looked to go elsewhere it would mean more testing and more time down the road, not to mention more expenses for travelling…Aughh! So, I hope I am making the right decision. I always tend to overthink things, so even if my surgeon was the #1 in the world I would still be unsure about it!
It will be SO EXCITING to see how I feel once the surgery is over…if I feel any different, or young again. I can’t wait to NOT have to eat all the time, especially in the middle of the night. and to not have to think about food ALL day long EVERY day, making sure I have something with me when i go out, wondering what food to eat next, etc… At this point, I really hate food!!!! (okay, sometimes, i do actually enjoy a piece of chocolate!) 🙂 but anyhow, thanks for reading all this. Sorry if it is too long, but i really had to get my feelings out to you all who actually understand! And thank you for sharing your stories. I can’t tell you how great it was to find this site!
Penny
Just to let everyone know that Laura just finished her surgery (I am in the waiting room waiting to see her). The University of Chicago doctors were able to expose the back/head of the tumor and do an enucliation. As expected her blood sugars shot up and now they have her in recovery before they move her to the ICU for probably a day.
Thanks for communicating with my wife over the last two weeks, you were able to shed a lot of light on this condition. With the knowledge that was gained I believe she was able to enter the operation with a little less worry. Now here’s hoping that she is able to get through recovery with the same flying colors.
Thanks Homa, it was 1.9 cm on the head of my pancreas, next to the main duct. My insicion is looking pretty nasty I hope my scar isn’t too bad.
I was put on a glucose drip the day before my surgery and I could only have clear liquids. I also was given an enema-that was lovely!! After the surgery it was a week before I was able to eat food again I was on IV fluids until then.
Susan
You should not be fasting without being under the hospital care. Under no circumstances would my doctors allow this. Ok everyone does things differently but if they are not aware of the danger that puts you in decide carefully if they are the people to look after you!!
Sorry cant write more at this moment but will be back soon!
Good luck
Angie
Peggy, I missed Leslie’s post at first also! She posted on 6/14 at 9:24am regarding her mother.
Susan, if you are that close to Mayo, I think you should definately check it out. It is too bad they are not in your network, but worst case they should be able to give you an opinion on the doctor at your hospital!
As for fasting before surgery, my instructions said clear diet starting at 8am the day before. As soon as I saw that, I called my doctor because there is no way I could keep my sugar up on that diet. He said I can eat whatever I want the day before, that I should eat lightly after 6pm, and to go to clear liquids after 8pm. He also said that I can come to the hospital early and get a glucose drip if I need to. Bottom line is when in doubt ask because even the instructions he gave me were wrong!
Hello everyone,
I’m leaving for yosemite in 2 hours! I can’t tell you how hard it was to pack..the organizational thing. But I’m so looking forward to being there. It’s a little scary because every year I go I end up having an episode. One year I ended up in emergency and last time I had the paramedics out. We can’t just not enjoy life though, right?
Susan,
Happy Birthday!!
I can’t blame you for wanting to get your surgery over with. Has your surgeon done those 2-3 surgerys?? After hearing Homas story I think I would op for a doctor with a lot of specific experience. You only want to go through that experience once. They’ve seen your tumor though, so that’s a different story. If my insurance would pay for Mayo, I would definitely go there. Did you look up the sights Laura put on?
I’ve always had to fast from liquids after midnight the night before surgery. You can always go in early and be put on an I.V. That’s what I always do. I usually have to convince them how much of a problem it will be though.
Laura,
Who is Leslie? Did I miss something?
Linda,
Since I’ve been taking a higher does of proglycem, I have symptoms at a much higher BS level now. Let us know what you find out.
Homa,
I haven’t had a major episode since May 19th. That’s one whole month! Thanks for asking.
Happy Birthday!
Homa,
Thanks so much for your reply and information. We have something else in common, it is my birthday today too. Happy birthday!
The other hospital I have in mind is Mayo. I live about 4 hours from Rochester so it isn’t that far away. Mayo isn’t in my insurance carriers network but I’ve been told that I could be approved to go there if needed. But…I really don’t want to put this surgery off any longer and would hate to have to repeat testing and more doctor appointments. My surgery has been scheduled for July 10 and I most likely won’t seek a 2nd opinion.
I really get uptight when I know I have to fast. I will have to start fasting at noon the day before my surgery which scares me to death. I’ve got different instructions from the doctor and from a nurse in his office and have to get this verified. One told me clear liquids until midnight and the other said clear liquids up to 2 hours before the surgery. I’m so afraid of this and of having to eat something and then run the risk of the surgery being canceled.
I wish you the best of luck and hope your insulinoma is found this time. I had 2 CT’s, an ultrasound, MRI and finally an endoscopic ultrasound. The insulinoma was found with the Endo ultrasound. Have you had one of these done?
Good luck
Susan
Hi Peggy, Linda here I saw my endo. at the cinic on Monday. He is running some test this week and if they are negative he will be doing a 72 hour fast next week to rule in/out the insulinoma. My proinsulin level was 71 but my losest documented BS is 68 but I’m really systomatic at 68. He said it may be possible that it just isn’t documented yet. If the fasting is negative he is going to do a complete body scan to look for carcinoma. I’ll let you know what happens next week. My systoms have just been getting worse over the last 6 months but started about 2 1/2 years ago. the hunger and anger is unreal not to mention not being able to think clearly. I’ll email more later.
Susan
That is great that you are going to have your surgery done soon. I bet you can not wait to get it over with. As for being concerned about your doctor not havintg that much experience with insulinoma. I don’t think you need to worry about it. Since insulinoma is so rare, it is hard to find a hospital that deals with that many cases. The only exception that I have seen has been Mayo clinic. But if your doctor has done this before and the operations that he has done have been successful I would not worry about it. it is important to have a trust in the person who is going to do the operation. That is the main thing. when is your surgery in July? Best of luck
Lauren
So good to hear that you are back at home and recovering. Where was the tumor at? and how big was it? I had the vertical insision done to me too. At first it looked kind of rough, but with time it started to look better. it has been almost ten month since my surgery and it is healing pretty good. I went and got my spiral CT done today. I sure hope they can find it. Wishing you a speedy recovery.
Everyone
As I mentioned I went and got my CT done today. What a fun thing to do for a birthday, lol. I am sure many of you can identify with how frustrating it is to go and get any kind of test done when you have to fast. a simple test turns into such a big ordeal. I only had to fast for four hours. I ate a big breakfast at eight thirty and they said I could drink apple juice if I needed to. but by the time I got to the doctor and got the test done and ate something it was two PM. As soon as I started eating. i felt cold and shaky. I guess my sugar had dropped down and I did nto know it. I have gone through all of this before and not looking forward to go at it again. I think i am the only preson here so far that has had an unsucccessful surgery for insulinoma. When i looked it up on the internet I found out that only between three to five percent of the cases go through a second procedure. Has anyone else gone through this beofre or know of anyone who has? it would make me feel good knowing I am not the only one. I have to plan for my wedding and everything is kind of on hold until I find out when my next surgery going to be.
Angie and Aileen
Glad to hear that you guys are feeling better now.
Peggy
How are you feeling? have you had any more eposodes?
Best of luck to everyone
Homa
I met with my surgeon yesterday for the last time before my surgery in July. He is an oncology and endocrine surgeon at the University of Iowa Hospital. He feels I have a 50% chance of having the insulinoma removed laparoscopically and only 2% chance of needing a major resection such as a Whipple. This hospital only sees 2-3 insulinomas a year which is my concern. He has extensive pancreatic surgery experience but not a lot of insulinoma experience. He seems like a very knowledgeable doctor and I am very impressed with him but I’m wondering if the lack of insulinoma surgeries should make me look elsewhere. Please let me know your thoughts.
thanks
Leslie,
I have done a ton of research on the surgery and have seen nothing that would discourage me from having the surgery. The risks seem very minimal to me vs. the quality of life that you can achieve. As for what hospitals do it, there very well may be one in your area. Mayo is ranked #1 in the country. Check out this link for other well ranked hospitals:
http://health.usnews.com/usnews/health/best-hospitals/rankings/specihqendo.htm
You need to find a surgeon who has done a lot of these is the key. The pancreas is difficult to operate on, but hopefully after meeting with a surgeon, your mom will come to the same conclusion. Good luck!
Laura
Peggy, Laura, Susan,
I am recovering just fine. My surgery was not laproscopic. I am cut strght down the middle of my stomach. Honestly, the incision was really not that painful. The drugs take care of that. The most painful thing was the gas. I guess its trapped air from when you are open and they are moving things around. The gas was extremley painful and gas-x and pain med don’t do anything for it, you just have to wait and walk it out. My dad made me get out of bed the 3rd day after the surgery and start walking and it really helped with my recovery.
I was is the hospital exactly a week. I did not have a drain but I think I should have because the day after the surgery my abdomen filled up with so much fluid I looked like I was carring twins. The put a tube down my nose into my stomach to drain the air and gas. I had that in for 3 days. It wasn’t as bad as it sounds. I never asked why they didn’t give me drains.
The best news of all is my blood sugars, it is truely miraculous I can go as long as I want to without eating. My blood sugars have been in the 90-100 range. It feels so good I can’t wait to get my body healed and get back in shape! The surgery is SO totally worth it!
Lauren
Lauren,
My levels are as follows:
proinsulin – 61
c-peptide -1.5 ng/ml and 495 pmol/L
insulin – 11
beta-hydroxybutyrate – .7
glucose – 37
Angie & Peggy,
Thanks for describing exactly how I’ve been feeling for quite a while. I used to love to work in my flower gardens. I bought one flat of annuals 3 weeks ago and still don’t have them all planted. I seem to have a hard time finishing most things that I start. I too leave for vacation in a week and am having a hard time writing an organized list. My office at work is a mess and I have a million projects started but not finished. I have also had what I think are bouts of depression. I am so ready to be my old energetic self again. I am a person that has always hated clutter. These days I see clutter all over my house. It drives me nuts but I don’t have the ambition to do anything about it.
After reading all of the above posts I am really looking forward to having this surgery next month. I found out today that my surgeon is going to attempt to remove the lesion laparoscopically. He isn’t promising that I won’t wake up to find out he had to do open surgery but he is willing to try removing it laparoscopically. I had my ovaries removed a couple of months this way and it was a piece of cake.
This message board is great and I wish I would have found it earlier.Thanks to everyone!
My dog was a Vizla mixed with Yellow lab..Its is very common in Ferrets, not so much in dogs. My vet said this was the 2nd case she has seen in 15 years. Very hard to diagnos, then its to late. Its sounds like it is very treatable in humans – thank god for that..
Congratulations Lauren!!
How do you feel right now? Are they giving you decent meds? I remember a couple people saying they had tremendous pain when they first woke up. Hopefully yours was under control. Are you up and moving much? And when do you get to be home with your family? Things are going to be so different. I think you’re the only one who has had it as long as I. You’ve given me hope. 🙂
Lauren, sorry if this is a duplicate, but I tried to post this message and it is not showing up for some reason!
What kind of operation did you have? Are you still in the hospital? How is your recovery going? Better or worse than expected? Did you have drains? I am getting very anxious about my surgery so more info the better! Thanks and I am glad you are doing so well!
Laura
Susan,
Definitely symptoms! I use to be quite organized…not anymore. That’s one of the first things I noticed to change. I also could not plan and had no creativity, previously my favorite things to do. I also couldn’t do anything alone, like get myself to go for a walk. This all came with a bout of depression which I have never experienced before. That was at the beginning and lasted 9 months. Things are a little better now, with the duration of the disease I guess. Except for the organization which has gotten worse. I’m planning to leave for Yosemite in 5 days, and I’m having the hardast time just trying to make out a list. My guess is you are not a lazy person.
I’ve had this disease for so long, my fear is that I have gotten use to being the way I am now, and that I won’t change back, when and if I ever get this taken care of.
Hopefully your surgery will be soon and this will all be behind you.
Angie,
I remember your first comment about ferrets! Yours was the only comment on here when I found this sight. You are such a positive person, I really enjoy hearing from you. I’m glad that you are at the point where you can start to forget about the surgery. Take care.
Hello everyone I had my surgery on Thurs and am now 7 days post op. Everything went well. My tumor was 1.9 cm on the head and I now have an incision from my breast plate to about 2 inches below my belly button. I can’t say the whole experience was pleasant but it was so totally worth it because my blood sugar has been WONDERDERFUL! It was on the high side Post op it got up to 191 but then it stabilized and has been between 85 and 140 24/7 so I am thrilled!It is an unbelievable feeling not to be a slave to your sugars!
Lauren
Hi,
I am looking for answers for my Mom. She was diagnosed with insulinoma about 7 years ago. Since then her husband has died (of natural causes) and she is living alone. She has a 8 – 5 job and seemingly manages relatively ok by eating all the time. She is 66 years old now. My concern is that because she lives alone she has no one around to notice if she is having an episode. She can usually tell when her sugar is dropping but has had a few episodes that have gotten out of hand. The morning after her husband died I had to call the EMTs because I couldnt wake her. When they tested her sugar she was below 10. Last night she had another major episode although I am not sure what brought it on (she ate regularly) but had my brother not been visiting her and called me when she became extremely disoriented and unable to focus her eyes I wouldnt have known and she wouldnt have been able to help herself. Her proposed solution is that I call her twice a day to check on her.
I want her to have surgery because her quality of life is worse than it should be. She is totally ruled by her diet – when to eat, what to eat… She is not monitoring her blood sugar or taking medication for this. She does have a bi-annual visit with her endocrinologist to make sure the tumor hasnt grown (it hasnt). I am concerned that if she waits much longer she might not be a candidate as her health might decline, etc.
She is convinced that the survival rate of the surgery is extremely low (based on my research that isnt true)and that only one or two hospitals in the country offer the surgery (i.e., the Mayo Clinic). We live in Alabama and I dont feel that any local hospitals are equipped for this type of surgery. I was wondering if anyone that has had the surgery has any statistics on their hospitals or surgeons (number of surgeries, successes, etc.). Thank you so much for any assistance you can provide.
Leslie
Susan
Surgery cant work that many miracles!!!
Seriously – I think thats the condition getting on top of you! When you feel better you will probably cope better. I had begun to think I was getting depression before they found out what what happening and I do feel more positive and energetic after surgery! Housework is still last on my favourites list tho!
Angie
post surgery, missed breakfast – ha no problem!!!
The past several months I have been increasingly unorganized and a bit lazy. Please tell me these are also symptoms and they will go away after surgery!
Peggy
Just to let you know I think its fairly common in dogs and ferrets – I know because before this site was up and running all I could find was info for dogs and ferrets – hence my very first comment!! I was so grateful to find this for real humans! It became a running joke with a few friends that I could be put in the same class!
Tim
So sorry to hear about your dog!
Susan
Dont worry too much about the drains – in the whole scheme of things they really are just another tube! Believe me I had tubes coming out of everywhere to start with and to be honest my catheter was the worst! At least by having a drain you know what is leaking or not!
It is 4 months since my op now and really only now beginning to forget about it occaisionally, suddenly you think oh yes that didnt hurt or Oh Ive done that without thinking! My system is still quite low as Im having trouble shaking off a cold at the moment. Dont be worried if it takes longer than your doctors visualise to come out of hospital or ‘recover’.
Good luck to those having surgery and best wishes to those recovering!
Angie (still here)
Good luck to all having surgery and those recovering!
angie
Tim,
So sorry about your dog! 🙁
How common is that disease in dogs? It must progress a lot diferently in them, I’ve had this disease for 15 years!
Thank you for the info on Proglycem, I would much rather take that form. I will ask my doctor about it.
What kind of dog was he?
You can buy the capsule form in Canada for 160.00 for 100 – 100mg tablets….the diasease in my dog caused the back legs to get weak and fail. Today I had to put her down. It progresses extremely fast in dogs. Good luck to all..
Peggy,
I do not see any proinsulin levels in all my blood work. I have insulin though:
Insulin 8.9, glucose 27
Insulin 11.3, glucose 51
Insulin 13.4, glucose 34
Insulin 6.1, glucose 32
Hope this helps!
Hey, a vertical incision sounds better to me than the alternative.
Thanks for the info on the drain Laura, that’s something I was not looking forward to. Sounds like you’re next in line for surgery?
Who remembers their proinsulin level compared to glucose? Mine was 94 with a glucose of 32. That sounds high enough to me to assume an insulinoma. Now if they would just FIND IT!
Karen, feeling like I was going crazy was always my biggest symptom.
Tim, bummer for your dog! Can’t you just put the liquid form of proglycem in a capsual if that’s the only way your dog can take it? I just picked up mine today and the pharmacist said it was a 3700 dollar perscription! Do you have doggy insurance?
My dog has insulinoma – want to use the drug Proglycem (Diazoxide) cannot find a pharmacy that carries the Capsule form – can anyone tell me where my vet can get the drug ?
Online I can find it on websites in Canada – no where in the US..
HELP
susan,
June 27th for me. Good luck!
Laura
Thanks for the information. My surgeon is at the University of Iowa Hospital so we are midwest neighbors! He will be doing a vertical incision as well. He did tell me before the insulinoma was found that he usually doesn’t do laparoscopic surgery but we would talk about it if it was found in the right place. I’m hoping it’s in the right place! I have an appointment with my surgeon on the 18th so I have to wait until then to find out more. I will ask about the drain after surgery. Hopefully this new practice is being done here too.
The thing that worries me the most about all of this is not knowing for sure what kind of surgery I’ll have until it’s over. A Whipple scares me to death. My surgery is scheduled for July 10. When will you be having yours?
Welcome Susan,
I met with my surgeon this morning and it sounds like you and I have almost the same thing. Mine is a bit smaller, but a similar location. What my surgeon said is I have a 1/3 chance to have an enucleation which he says is 4 days minimum in the hospital with 4 week recovery at home. 1/3 chance of a partial pancreanectimy (sp?) which he says would be 6 days minimum in the hospital, but still about 4 weeks recovery at home, and a 1/3 chance of a Whipple which would be 9 days minimum in the hospital with 6-8 week recovery at home. I hope this helps!
Lauren,
My surgeon is doing a vertical incision as well so you are not alone! He said pretty much breast bone to pelvic bone, sounds attractive! I hope you are doing well after your surgery! I look forward to hearing how you are doing.
Everyone,
Something interesting, my surgeon’s name is Dr. Matthews at the University of Chicago hospital. He told me that unless I have a Whipple, I will not have any drains at all coming out of surgery. He said they are finding that they do more harm than good as they can lead to infection. If I require a drain after surgery, the radiologist can most likely place it without surgery. He said this is new theory and practice, but you should definately ask your doctors about it!!
Karen
For me the only symptom was hypoglycemia. My blood sugars were between 27-40 every time I was checked by a doctor. Mu “72 hour fast” lasted until 10am the first day! I woke as a 54, was 45 when I got to his office, and was 32 an hour later. Good luck!
Lauren
I have not heard of vertical incisions, but I would guess it has something to do with the colon graf? Very strange and I wish you lots of luck with your surgery!!
Aileen
Great news on your recovery, I can’t wait to get there myself!!
Everyone
Going back to what we talked about before, today it came up with 2 different people that I have hypoglycemia, and both of them responded “me too”! I guess I am starting to understand why medical professionals don’t believe you when you tell them you are hypoglycemic!
I was finally diagnosed on the 5th with an insulinoma. I’ve had symptoms for over 5 years. For the first 3 years my gyno told me it was stress causing my symptoms. Finally two years ago my GP diagnosed me with hypoglycemia. The symptoms have become increasingly worse over the last couple of years. I ended up in the ER one day a few months back after nearly passing out at work. My GP then referred me to an Endocrinologist. The Endo had me fast for as long as I could at home and then have my husband drive me to the hospital lab to have blood drawn. This test got his attention since my glucose level was 50. He then set me up for the hospital fast. I lasted about 16 hours during the 72 hour fast. I also found that it took the nurses in the hospital a while to understand that my blood sugar would drop quickly once it started. Even the doctor thought I would last a couple of days. My level during this fast was 37. Besides the fast, I had 2 CT’s, a MRI which all showed nothing. Finally I had a endoscopic ultrasound this week which found the tumor. It is 1.5 cm and located on the lower part of the neck. It is on the outside but slightly embedded. I’m waiting on the final pathology reports but the doctor who did the ultrasound feels the tumor is benign. I’m hoping that the tumor can be removed by enucleation but won’t know for sure until I see by doctor in a couple of weeks. Does anyone have any idea as to what type of surgery I may be facing?
Hello, I just found your website and i also have insulomia…i would like a list of all the symtoms everyone has….i had to keep telling the doctor i had this but they all said no you don’t have it…but i do…they found a tumor…its really hard to explain what you have when you don’t really understand it…i have alot of symtoms..but just want to find out what everyone has….thanks for your time…i thought i was going crazy….but now i know….take care and hope your well…karen
Hey everybody its nice to hear from you again! I am in the hospital(MDAnderson)right now on a glucose drip, my surgery is tomorrow morning. Its on the head and bigger than I realized, I got to see my CT scan. My surgeon has told me that he will be grafting a piece of my colon to close the hole in my pancreas after the tumor is removed because one of the biggest risks w/ this surgery is that the digestive enzymes of the pancreas can leak.
My surgeon (Doug Evans) seems to be the authority here at this hospital and after speaking with him I’m sure I’m in good hands. They are flabbergasted that I have lived this long with this. He also said that some people with insulinoma do have higher proinsulin than insulin. I will write back as soon as I am able to after the surgery.
One other thing my incision will be straight down the middle of my stomach from my rib cage to about 2 inches below my belly button. Has anybody else had a vertical incision?
Lauren
Well it took the whole 72 hours to drop my sugars over night each time they plumitted quit significantly so they say??? They also sent me for 2 chest x-rays because he thought he had seen something on it so who knows. I only went down as low as 2.5 mmols I think thats about 45 in America. So until I get my results wich my consultant said can take weeks I do not know what is going on.
I think my con does not think it’s a insulinoma but he wont know until the results. He is conscerned about my sugar drop over night. Will keep you updated.
Hi EVERYONE…..B
Peggy and Homa,
Thanks for asking about the recuperation. I have been doing really well, thankfully. Due to the incision being so small, I haven’t been experiencing much abdominal pain. Probably the last time I felt pain when I sneezed, for example, was about 4 weeks after surgery (which was on April 19). My sugars have returned to normal (I came out at 78 after fasting all night) and I have started biking and running again. The one thing I have been really, really careful with is heavy lifting…I think even a few weeks ago I lifted something around 10 lbs (the surgeon recommended nothing above 20) and I felt a lasting pain in my side. And I started ovulating again, which hasn’t happened in a while. My endo is convinced that the heavy insulin load may have interrupted my normal hormonal flow. So, in the end, I couldn’t have asked for more…I feel extremely lucky to have made it to this point in one piece.
HI Homa
Im still here reading all the posts as they come in….
Ive been away for a week so had a few to catch up on!
The last time I wrote I was off for a scan to find out if there was anything wrong after my surgery – the good news was that they found nothing! the bad news they dismissed the pains I was having and sent me away! I had a few more pains so went back to my doctor who gave me antacid tablets and so far I have been ok!! I was annoyed with the hospital as my blood test done by the doctor indicated I had and infection but the hospital did not take any further tests ans I havent heard from them at all. Im due to see my medical consultant at the end of the month so Ill have a moan to him!!
Just a warning to everyone after surgery – dont catch a cold and cough! Ive got a stinking cold – sneezing and deep coughing is sooooo painful! Im walking around holding my stomach feeling like Im going to burst my scar, and my muscles really really hurt as Im coughing!!!
I suppose its good exercise for those muscles but oh dear!!!
Other than all that Im normal – well as normal as is possible for me!!! Its great not having to worry if I have a late breakfast or skip lunch while out shopping!! I do remember all the time what I was like so I am so glad to have had the surgery! I can actually lay on my side and have slept on my tummy once or twice. Sunbathing on holiday was tricky cos I kept getting stuck on my front and not being able to turn over easily!!! So four months now and it is still difficult to roll over!!!!! Oh yes the sunbed back fell back while I was leaning on it and OH MY GOD did it hurt! people around the pool must have wondered what the fuss was about!!
Reading Lauras post above, I could never tell how low i was getting or how my sugar levels rose after eating. Luckily i knew in time at a certain level but even then that wasnt consistent. I couldnt tell sometimes if I was going to be 4, 3 or 2.5! Sometimes I felt like I was really low but wasnt!
Peggy – it did make me laugh when people would say ” oh Im like that” or “Thats what happens to me” in fact I had one person say that her friend had exactly what symptoms I had!
In fact one of my so called friends played down my condition to other people when we found out about it and told another friend it was nothing!! Good friend hey!!
Enough from me!!
Bev – What happened during your 72 hr fast?
Good luck everyone whatever stage you are at!!
Peggy-
One other thing to consider, a procedure like that is only as good as the techincian or doctor that does the procedure. I have a friend who was recently diagnosed with cancer. His original doctor told him they did not know what it is, but they know it is not cancer. His new doctor told him the scans he had done with the first doctor were useless because they were so blurry, he could not read them. He had the scan done again by the second doctor and got his diagnosis immediately. Just something to keep in mind, this is so rare, was your technician’s specialty this type of thing?
Peggy,
They did an MRI on me first that showed nothing. My blood work was inconclusive because even when my blood sugar was at 27, my insulin levels were low between 5-8 which is on the low side of the range. Being that they were running out of options, they did the ultrasound as a “rule out” and it showed up. My tumor is not big only 1cm x 1cm I believe, so it does work even if they are small. It is not a pleasant procedure, but worth it to get the diagnosis. You get knocked out and you get a tube down your throat. My doctor wanted me to have a glucose drip, but instead, they got my sugar way up before the procedure and checked me as soon as it was done so I was fine. I just read up above that you had an endoscopy, they called this an endoscopic ultracound so maybe it is the same thing?
As for how long I have had this, it is very strange. I had symptoms when I was nursing my second child which was 2005, then they stopped when I stopped nursing but I did get pregnant right away again. I had no symptoms while I was pregnant, but as soon as I started nursing my third child they came back, but this time they did not go away. My doctors think I have had this for a long time because I have hypoglycemic unawarenss which means I am not aware that I am low until it is too late. The first time I was at my doctor, she had me fast for the blood work (Again probably did not believe me, who knows?) So I had this whole appt with her, I was fine, I left her office went to starbucks and drove to work. I never felt my sugar go back up after eating at starbucks, I felt totally fine. The next day she called me to say that my sugar was 27! Can you imagine walking around and driving at 27 and being fine? It is crazy.
Lauren
I wanted to wish you luck with your upcoming surgery. I also wanted to thank you for mentioning how they found your tumor. I had done regular CT at lwast three times and they did not find it. My endo is trying to find out if we could do spiral CT here. From what I have red, it is good in finding small tomors and it pinpoints them. I am hoping that if I can get that done, and they can find the tumor, I won’t have to go to Mayo clinic. I do not want to travel that far, I am sure you know how that is
I will keep you in my prayers. Good luck and keep us posted.
Aileen
How are you feeling? has the recoperation been hard?
Anie
Have not heard from you in a while. I hope you are feeling better and back to the way things used to be before insulinoma
Homa
Hi Peggy, I’ve only had the blood work done. I get very symptomatic with a blood sugar of 70 if it goes lower than that it’s I really get bad. I’m going to the Cleveland Clinic this month to see a specialist. I’ll let you know what happens. Thanks for responding. It’s nice to know others are going through the same thing. People that don’t have hypoglycemia as you know just think they know what you’re talking about but have never really experienced it. I’ve really been interested in how people have handled surgery. I’ll be in touch.
Hi Laura,
Welcome to the club, I get that all the time. At least now there are a lot more professionals that understand than there use to be. Still, when I am asked to fast for some tests like blood work, I just say, yeah sure o.k! What’s funny, is when you try to explain your condition to someone you know and they say, “Oh yeah, I’m hypoglycemic too.”
So how long have you had to live with this before you were diagnosed? I’m not sure I know anyone else who has been diagnosed through an ultrasound… Maybe your tumor was big enough to find that way? I’ve had numerous MRI’s CT’s and endoscopy’s, to no avail. Maybe I’ll ask for a US.
Hopefully your surgery will happen soon. I’m glad you found us.
Lauren,
The endo I saw today said that my proinsulin was 94 when my glucose was at 32. That wasn’t the 72hr fast though, if that makes any difference. Other than that she just upped my proglycem to 200 mg 3 times a day. I can’t wait to see what my eyes look like in the morning now!
One more day!! Hang in there.
Aileen,
How are you feeling? Are you back to doing all the things you use to?
Ooops! Sent the message before I was ready…what I was going to say was that my GP initially doubted that my hypoglycemia was serious. I got the “well, you’re thin, so experiencing low blood sugar can be normal” talk. It wasn’t something that was jumped on right away. It took several months after that conversation before I insisted on a glucose test and came in at 35 mg/dL..after that, I was sent to a great endocrinologist who took the potential for insulinoma quite seriously. From what I understand, though, there are a few other disorders that can cause low blood sugar (for example, I was surprised to learn that diabetics can also experience lows) so you would think medical staff would respond with more immediate urgency…it just pays to be insistent, I guess. Good luck!!
And, Lauren, I remember that you are having your surgery this week, no?? I’ll be thinking about you and wish you the best of luck! I know you’ll do great!
Laura,
I did experience some doubt at the beginning when I told my GP that I thought I
Lauren- by the way, when my blood sugar is low, my insulin levels are also low which I guess is abnormal if you have a tumor. Even when they did my ultrasound, they were ruling out a tumor more than expecting to find one.
Hello All!
What a great idea this is! I have been looking all over the internet and this is by far the best information I have come accross. I had an unltrasound last Friday and finally got my official diagnosis of a tumor. I am meeting with a surgeon at the University of Chicago this Friday. Unfortunately, my tumor is located on the head of the pancreas so I doubt the surgery will be laproscopic, but at this point I will take any type of surgery that will give me my life back!
The thing I think is most “funny” about this disease is you tell people you are hypoglycemic and they always give you that yeah sure or whatever look. Even when I went in for my ultrasound on Friday, I had to fast before so of couse I was low. When I got to the hospital my meter said I was 43. They give me all this paperwork to sign and my husband kept telling them, her blood sugar is low, can we start an IV and then do this and they kept saying it was not a problem. Finally when they did check, I was 35 and they all freaked out. It’s like they assume you are lying or you don’t know what you are talking about. Has anyone else experienced that?
Hi Linda,
Have they actually found your insulinoma? Or have they only done the blood work so far? Your proinsulin sounds pretty high. I hope you have a good specialist. Keep in touch.
Peggy
I wish I had something to tell you Lauren,
I do see another endocrinologist from USC on the 4th. I guess we’ll just go from there. In the meantime, I had to have the paramedics come out again last Saturday. Someday this will end, right?
Thanks Peggy, I since found out that proinsulin is the precrusor to insulin (it turns into insulin) so if that was high then eventually my insulin would be high so everything is a go for my surgery. What about you? What is your current situation?
Leila,
Have you found out anything else about your nephew? He is so young to have to be going through this. I think given the choice, that I would be at the Mayo Clinic. What exactly did they do in surgery?
Lauren,
June 7th is right around the corner! I’m sure I don’t know anymore about insulin and proinsulin than you do, but if your insulin levels were supressed than does that mean that your tumor is non-functional? Not likely since your sugars are so low. I remember a doctor telling me that the tumors give out insulin in bursts, maybe…i don’t have a clue.
Did they do any other tests like the calcium stimulation to find out where the insulin is coming from? I guess they’ll know more when they take the tumor. I can imagine how uncomfortable you are with that. At least doing something is better than doing nothing. Just be sure you demand the best treatment Lauren. Speak up or have your husband. Please let me know if you find out anything else before you go in.
I’ll keep you in prayer
Hi everyone, I just found this site tonight I was just diagnosised with an insulinoma a couple of weeks ago and I’m going to see a specialist on June 18th. It’s been great reading the conversation on the site. I had tyroid cancer 2 years ago and I was attributing alot of my syptoms to a high thyroid level. Well, thinks kept getting worse and than the uncontrolled anger and the feeling that I was always looking through a cloud. I had a few episodes where I thought I was going to pass out than I’d wake up a night needed to eat. I knew something really wasn’t right. I get hand tremors and was concerned I might have MS because I have a brother that has MS. So I’m going to read more of what you all have to say and try to educate myself before I face surgery. My proinsulin level was 71. I’m hoping if I do face surgery it will be laproscopic.
Question: can anyone tell me the difference between pro-insulin and insulin levels?
I have a distinct tumor on the head of my pancreas however my insulin levels were not high they were “supressed” whatever that means. They averaged 5-6 I believe however my proinsulin levels were high(20. I am still scheduled for surgery however I’m a little worried that my actual insulin levels were not that high?
ST,
I’m happy to hear your wife returned home and is doing well. I also am hoping and praying that she will heal well and avoid further surgery.
It must be hard for you, trying to balance your responsibilities, but it sounds like your priorities are in order. I’m sure your wife will pull through with such great support. Let her know we are pulling for her as well. It’s hard to understand why we have to go through such hard times. But.. that which does not kill us makes us stronger.
Keep the faith
No tumor was removed as far as I know. We still have no results from the lab, and it has been almost a week. Since insulinomas are so rare in a child this age, they are suspecting that it may be something else. Perhaps beta cell neoplasia. I do want them to see someone more experienced. This doctor has done 4 surgeries for insulinoma.
Thank you for your input, Lauren.
Leila, did they actually remove a tumor? I was a little confused by your post. Of all of the research I have done on this topic I know one thing: It is vital that you go to endo’s who are specifically experienced with insulinomas which is hard to do because they are so rare. I have been extremely happy with my team at MDAnderson in Houston. My endo there answers my e-mails within an hour and the surgeon she is referring me to is specifically a pancreatic surgeon and they have done insulinoma surgeries. I would question the team and ask them how many insulinomas have they diagosed and removed. He may have another tumor that they missed.
Hello! I hope some of you have thoroughly researched insulinoma diagnosis and treatment and have come to some conclusions as the to places to go for the best care. I have an 8 year old nephew who has all the symptoms of an insulinoma. Insulinoma is extremely rare in a child this age. He is in a children’s hospital in Atlanta. After the standard tests, it appeared to be in the vicinity of the hepatic vein, but after laparascopic surgery, the symptoms persist and are even a bit worse…a higher level of glucose has been needed. The doctors are questioning the diagnosis now. I am feeling very insecure with the professionals who are working with him, though I know they are doing their best. Can you recommend anything for us?
Please help. His mom is willing to travel with him.
Hello all! My surgery has been scheduled for June 7 at MD Anderson in Houston, TX. I am excited beyond words that in three weeks I will no longer be a slave to food. I will be able to skip a meal! Hooray!!
Peggy,
My wife and I returned home about 3 weeks ago. She still has the drain connected. She is eating well, looking healthy with no infections and has been stable. The doctors hope that once the drain tapers off, there is a chance that she may even not require further surgery. The doctors/surgeons have been saying it will taper off for a month but the drain is not tapering off as it has held steady between 40-50 ml/day. They want to wait it out for a few more weeks before a decision can be made. Her mobility is greatly resricted and on some days she is a bit down as teh drain quantity is not going down at all. I am providing her encouragement and also we have been having a constant stream of friends/relations providing support/encouragement. Hoping and praying she recovers/heals well and avoids surgery. As some of the scenarios (if it does not heal) are not very pleasant, I have discussed with some of the surgeons in US who deal with those surgeries/transplants (can be very expensive too). I am not so sure when this ordeal will end for us.
As I returned to work after 3 months and given that I am a senior person in my company, I am literally drowned in my work. I did not have much time to browse this thread and also trying to balance my time with work/wife/kids.
Hello there Peggy,
I was first diagnosed within 48hours at my local hospital after being admitted unconscious.
They could tell because of the biochemical tests but the (new) consultant said I couldn’t have insulinoma because it was too rare!! Sent me to a see a neurologist………………..another story!
Months later I was sent back to the endocrinologists who sent me for an MRI scan which they felt showed a suspicion of a tumour. They put me on diozoxide whcih is unpleasant but better than constantly eating. Then they sent me for a CT which showed nothing to the people at my local hospital. At the teaching hospital they had a CD of the tests and said they could see 2 tumours!! YIKES! Finally had the EUS after which the doc said he could see only one in the head of the pancreas which was very near the bile duct.
Only hope now that there is a bed for me tomorrow.
Dear Bev,
Hope the test works for you!
Jane
Sorry Bev, I meant to ask Jane which test showed her tumor.
How did your fast go? I hope it was easir than mine was. After five hours the protocol was that I go from the clinic and a nurse that knew what she was doing to the hospital and a group of nurses that had no idea. It took them over an hour to check my sugar and get their act together.
Sorry Bev,
I know you’re going for your test tomorrow. I meant to ask,
Jane,
which test showed your tumor?
I know I already sent this post but…
Yay Lauren!!
I’m so glad they found your tumor! I was hoping they’d find it on your first CT. Good thing you insisted they do it.
Your life is going to be so much different. 🙂
Bev,
Which test showed your tumor?
Dear Bev,
I had the fast in November. lasted far less than a day as the nurses were very worried about leaving me with such low blood sugar levels. Of course they had never heard of the test(neither had the doc on duty!)
I won’t go into details but because I saw so manyifferent people at clinics there was a lot of confusion about where things went next until I met one doctor who said they couldn’t deal with me there and referred me to a teaching hospital. It is here where I’m having the op on Monday. Had the MRI CT and EUS tests after the fasting test fairly quickly though.
Am looking forward to feeling better for the summer. Or is that wishful thinking?
Good to read about all your experiences.
Wish I’d found the site before.
Jane
THEY FOUND IT! THEY FOUND IT! My doctor just called me! I am the world’s happiest woman – to have found a tumor- Who’d have thought? Its 1.4 cm and it is in the head. They found it with the CT Spiral scan. Homa, I went to MD Anderson in Houston. They are more knowledgable than I expected and supposedly the surgeon they are assigning me to has done insulinoma surgeries before. I’m not sure how many but since they know the exact location I’m not as worried. His names is Evans. i’m going to celebrate now!!
Hi Lauren
I am glad to hear that you got your test done. I have never heard of blood sugar going up, but with insulinoma you never know. I wanted to ask you if you went to Mayo clinoc or not. I am trying to set up a time to go up there, I have to get my medical record from Duke before I could go though
Hope you get the result of your test son.
best of luck with your surgery Jane. I hope it all goes well.
Also I insisted the do a CT spiral scan, hao many of you found yours with this?
Bev – how did you fasting test go?
72 hour test question – I had mine on Monday morning. I ate something at 3 in the morning and by the time I got to the observation room my sugar was 39. They said they wanted to get another reading before stopping the test. Then it started going up! Has this happened to anybody? It never went over 50 but lingered between 45-50 for hours!! I’m wondering if it was because I was just lying still in a chair and not moving at all and I know your body will kick in reserves to compensate. So anyway 12 hours into the test it plummeted pretty quick. I got to 33 and they stopped it. So does this mean I possibly don’t have insulinoma because they didn’t drop consistantly? Did this happen to anybody else? The waitning for results is killing me!
Hi Jane,
I’m in Brighton south coast of England. I go in for my 72 hr fast on sunday evening. How long have you been between 72hr fast and surgery ?
Angie has had the surgery in the U.K. and is great for information.
I wish you luck Monday and hope to hear off you post-operatively.
Goog Luck Bev
Hi Jane,
I wish I was you! I assume they know just where your tumor is. Monday will come quickly, naturally you are nervous, I would be as well, but it is a little exciting is it not? Have you had the condition a long time? I think I hold the record at 15 years. Out of around 15 of us I think 10 have had surgery. 6 did really well, Suzie had a harder time, but is doing pretty well now too. Only 2 or 3 were more complicated. That’s pretty good odds.
(ST, I would really like to know how your wife is doing.)
Hopefully you have good support to go through this with you, but if you need anything from us, we’re here for you! Let us know what you are going through.
Peggy
Am having surgery on Monday for an insulinoma and am very nervous of what will actually happen. Looked on the web and found this site. Couldn’t stop reading all the info, good and bad. I’m in Birmingham, England.
Jane
Bev,
Based on the other experiences described here, I believe the PICC line is more special case than standard. My endocrinologist felt strongly that I needed one because my levels were dropping so rapidly at that point, and that it would keep me stable while we consulted with potential surgeons. All told, I had it for about a month. It did make it very easy to do most normal things (like, y’know, drive, or take plane flights, or stop eating every thirty minutes). If the time between your diagnosis and your surgery is short, it’s probably not worth it. I had to deal with a home care nurse each week (she would change the dressing), constant shipments of glucose and batteries for the pump, and the increased difficulty of showering while wrapping one arm in saran wrap to keep it dry.
It doesn’t rank as one of my Top Life Experiences…
Brendan
Hi Peggy,
I’m going for my test on Sunday. I’m hoping I can take my laptop and be able to use it there so I don.t die of boredem……lol.
Does anyone know if having a PICC line standard for this procedure or does it depend on the hospitals local policy?
I had an endoscopy yesterday, but they didn’t find anything on my pancreas. 🙁
They found that the lymph nodes around the pancreas were swollen, whatever that means, so they took a biopsy.
Bev,
Are you having those tests done now? Are you finding answers to your questions? I don’t really have any symptoms anymore, until I check out mentally. I eat or drink rice milk whenever my sugar gets in the lower 50’s.
Which is all the time. I only feel strange coming up when I’ve been extremely low, I figured this was just before my brain has gotten the sugar. Speaking of which, I could use right now.
Bev
Ill reply to your post that came through to me but isnt here!!!
If you need to contact me, Im on angieanco@talktalk.net.
Just to say this to you and anyone else reading this, any questions you have, you must ask! When I first found this site I was heading for surgery and could find very little info on this condition – everything was about ferrets and dogs!
Helen replied to me and when I found out she was “up the road” I was so relieved I cried! She will tell you that she found very little help or info when she was going through it and she helped me so much! We are very good friends now!
Anything that we can help you with we will. We felt that we wanted to start something that could offer info and help but this seems to be doing that with all the input anyway!
Are you doing your test on the 13th May or are you doing it now?
Blood levels are from the finger prick test but during the test they take intravenous blood to test, as that takes a few hours they test with the finger prick test to keep a close watch.
You may find you end up with our surgeon anyway as Im sure he does private work too!
I could not have keyhole because of the tumour being where it was in the head of the pancreas next to a duct. I have a 9 inch scar across , 2 inches above my belly button. Helen’s is smaller – we have compared – LOL!
I dont really understand your question about eating. When I ate I felt normal, I only felt weird when having a low. My body was so used to being so low for so many years without knowing anything was wrong. I never blacked out although I did have the odd bout of confusion – my husband says that was normal ha ha! – and I lost time one day, I was feeling bad and things were really strange. I know what you mean about feeling a fraud as when I was in hospital having the 72 hr test they were all really concerned and I was wondering what the fuss was about – I know now!!
When I had a low I would go shaky, have extreme sweats, loose my ability to talk slightly and I d get a fizzy tongue. I would not always get the same symptoms. My worst reading was 1.7 at work one day and I just felt faint. I tested my blood for about a month while waiting to go to Barts. It was very interesting.
I always kept a cereal bar with me in case I had a low. I was still trying to battle my weight and was going to Slimming World all through this to maintain. It did become an excuse to have a bit of this and that when I was feeling low but if I hadnt have been doing that my weight would have rocketed. I put on 10lbs over the last two years for no real reason which was also another reason I felt something was wrong.
I was so tired all the time and getting a bit depressed. I hurt my back and went to my doctors and while there asked for a blood test. It all went from there – very quickly I must say!
They reckon with my history I had had this for 10 years but it had started to get to a size where it was effecting me more and more.
Let me know when exactly you are going in.
Im back at the London next week as I have to have a scan – I may have a build up of fluid and they are going to check it out! If you are there I could pop in!!
Its 3 months yesterday since my op and the change is incredible!
Hope this helps you keep us informed.
Regards
Angie
PS Lauren – it took a couple of hours to get the blood sugar readings back but a few days/week for the c-peptide and insulin levels.
JON
We are missing 3 posts!
Those of you have done the 72 hour test, how long was it after they drew blood that you got results? I know getting an insulin reading is a lot harder than a blood sugar reading.
Hi all,
Well done Amanda & Aileen on getting through your op and am so very pleased it is going well for you and is has been successful and that is a tribute to your surgeons. Yes it is amazing after surgery how different we feel and for me that is when you realise how sick you actually were before the op.
Wow Aileen, 2 inches that is great, mine is 8 inches (which is the norm). Yes the thin red line eventually fades to a very fine white line but then I am not someone that shows off my tummy or wears a bikini so it does not bother me so much.
I can say that although we feel normal again you do need to take it easy, listen to your body, when you feeling tired then just sit back. I was in hospital for 2 weeks, then off work for about 4 months. They say about 2 months recovery before going back to work, but I was mentally struggling with the op and a few other things so was not ready to go back.
Still a year on I sometimes feel really exhausted, I don’t think I’m as strong as I used to be but am healthy & well. I sometimes am a bit sensitive around the scarring, e.g. when I sneeze or when I do some tummy exercises, it is not painful though.
Amanda, hope you are enjoying being back at work and I must say you were brave to go out dancing so soon. I did get out and about and go for walks but did not attempt the dancing until much later.
Hi Bev,
As Angie says you definitely need to get in touch with Dr Drake at Barts or get your GP to refer you, he is one of the top endocrine specialists there. Our surgeon, Mr Bhattacharya and Dr Drake are a wonderful team and you could not ask to be in better hands.
I know this is a scary journey but you will get through it and being with the endocrine department means you can trust that you are in the right place for the 72 hour test as I initially was in a general ward at a local hospital and that is scary to be with nurses that are more frightened than you! I spent a week in this ward and the nurses are lovely and worked hard but they did not understand or know of insulinoma or how the 72 hour test should work therefore kept feeding me to make sure I did not have a hypo. Once I was transferred to Dr Drake’s team in London I felt the difference and relaxed a bit and had more faith in them.
An article for you to have a look at
http://www.bartsandthelondon.org.uk/formedia/press/release.asp?id=1337
If you would like to email me at the address in t he 3rd response as above then please do, I am happy to help out and meet up like Angie and I have done prior to her op – that’s if it’s doable.
I don’t sign on often at home so sometimes am slow at responding.
Best wishes to all.
Helen
Angie cheers for advice,
I live in Brighton I went to see Mr John Lynn (endocrinologist) today at the Cromwell in London. He seemed pretty convinced. I have my test on Sun to Weds. Part of me feels like a fraud as when I am well I can cope and think I imagined the whole thing.
Your blood levels are they blood sugar finger prick levels or intrevenous from your vein?
Well I hope this hospital is as knowledgeable as they sounded at St Barts. Well I have faith in them.
Angie did you have it done laparoscopically or a laparotomy?
And
When you ate pre surgery after going low did you feel just as odd going high?
And
Did you just eat when you thought you were going low and at what point did you know this was happening?
Soz for all the questions but your all the nearest thying I have to understanding.
Cheers angie.
Bev
Ive just read your post again as I replied before reading all the other replies.
To put your mind at rest they monitor you constantly and the nurses are trained specifically for these tests – but you need to go somewhere where they are! They probably will not allow anyone to stay with you – in the US I think you get more freedom but here is a little different, I dont know how they do it privately.
They have to get two readings below 2, mine were 1.9 and 1.7, as soon as you hit that they pump you full of toast and sweet tea!!! If at any time you feel you are having a low you call they test with the monitor and take blood to send away. It took 30 hours for me to get my two results and I went in with a count of 2.9 – I had been 2.2 all weekend before I went in!
Hope this helps – there is no need to be terrified, but try to go to St Barts, that is my best advice. Myself and Helen were treated there.
Angie
Bev
Do not bother going private !!!
Get your doctor to refer you to Barts and the London, Dr Drake.
Not knowing where you are may make this difficult but they really know exactly what they are doing. Im near so it was easy for me.
My insulinoma was suspected by my doctor in june, I had a 72hr fast in july, various scans in august and a calcium infusion test in september, an endoscopy in november and my operation was in february. I could not really have had better care and the surgeon was the top man.
Any help or questions let me know!
Angie
Thank you,
Aileen, Peggy and Lauren for your kind advice.
I am off to London tomorrow to see Mr Lynn who is top dog for Endocrinology in the U.K. So hopefully I will have news and plans for the 72 hr test etc.
I,m off work at the moment as I’m a nurse on a general elective and acute surgical ward. Not the best place to be blacking out.
Anyway will let you know what happens.
Good Luck
Bev,
I would concur with Peggy and Laurens’ advice…I brought my husband with me, and it was absolutely comforting to have a loved one close by in an uncomfortable situation. From what I can tell from others who have written about their 72-hour fasting tests, many were able to get to an acceptably low level before 12 hours were up. Hopefully, you won’t be stuck in the clinic for much longer than that. In my case, my endocrinologist was uncomfortable taking me any lower than 35 mg/dL (even though I had previously registered at 20 in her office). She monitored my heart rate (looking for rapid pulse), my temperature (looking for a drop), my skin (clamminess), and asked me math questions (trying to ascertain whether or not my cognitive skills were still functioning). Once all of these factors broke down (and once I reached 35), she stopped the test. I think she didn’t want to send me into a seizure-type episode, but I guess she also needed to draw blood at the appropriate time (when a low blood glucose level was going to represent an exceptionally high insulin level).
I am sure your clinic will try and make you as comfortable as possible, and will not let you fall to dangerously-low levels…it is not ideal to have to go through this, but it is the first step in getting your insulinoma diagnosed…good luck and keep us updated!
Peggy, so UCLA has been running all your scans? I would think they would know what they are doing. I hope I am not making a mistake by not going to Mayo right away and saving the time. But actually my doctors sent referrals and my records to Mayo over a month ago and I was told that a Dr. Service was reviewing my records. I have not heard a word from them since. I find this strange. I know Homa said she was supposed to be seeing the same doctor.
Homa-if you’re out there, has Mayo been responsive to you?
Hi Bev,
After living through a few surgerys,a scary childbirth, deaths in the family and even raising a couple of teens, THIS is definitely the scarriest thing I’ve ever been through. Loosing control to the hypos is hardly even relatable. At least you’re not alone, though it sure feels like it. I spent a day in the emergency room this weekend, I don’t think they really know what you’re experiencing either. The good news is there are people who do now. Two people on here were treated in the UK, successfully. Angie and Helen.
Great advice from Lauren, take someone with you that can tell when you get low. I had a freind call me when I was in the hospital, and he could tell I was out of it and had to call the front desk to send someone in to take care of me!
Though they want you to have some symptoms, they don’t have to keep you down long. If you have someone with you who
knows when you’re getting low, and your own sugar monitor,
you should be fine. Nothing like when you get low on your own.
I hope your diagnosis and treatment go quickly!
Peggy
Lauren,
I had a good endocrinologist at first, who diagnosed me right away, but I guess he was too good for my insurance. So, since then I’ve just been having tests. I’ve been told by a certain hospital that there equipment/ technicians are better than others. I guess I haven’t had the right people doing mine. Really, you have to be your own advocate. Experience with insulinoma can vary so much. I think it’s my insurance that’s been holding me back from being treated.
The endo. that did my second 72 hr fast recommended that I go to Mayo or Stanford. My insurance settled for UCLA. I wish I had persude the other hospitals because I believe they would’ve taken care of it long before now. Just be sure, if on the small chance that they do not find what their looking for in Houston, that you don’t go home! Make them do every test they know of. I know the calcium infusion test isn’t done that often, but if that’s all that’s left, do it! Sorry to sound so extreme, but you know how it is to live with this for so long. The good news is you’ve had the least tests so far, they’ll probably find
it on your first CT. 🙂