Insulinoma & Whipple triad – Surgery (update)

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 (“blind”) partial pancreatectomy except in patients with insulinoma plus MEN 1.

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

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

Insulinoma

1,718 thoughts on “Insulinoma & Whipple triad – Surgery (update)”

  1. Thank you all– I won’t give up until I get answers! Your comments have been so helpful and comforting. I am just really frustrated right now. Thank you so very much

  2. Stacy, just to add to what has been said, the first indication mine was probably an insulinoma was my fasting blood sugar was 41 but my insulin level was 45 which was way too high. I was producing insulin when it was not needed. From that they did a CT scan which showed a 1 cm tumor in the head of my pancreas. So I am curious what blood work they did and what it showed. Two months earlier my fasting blood sugar was 47 and my insulin was 27. So over time it was getting worse. Just sounds weird that there is a tumor and you are having the symptoms but they cannot diagnose it. Keep asking and asking until you are satisfied with the answers. I hope you find them soon.

  3. Hi Stacy,

    I’m sorry you have to wait to get pregnant, but I don’t blame you for wanting a better answer, I would too!

    If you haven’t already, I would ask Dr. Singer if he could say that it definitely was not an insulinoma. Did he have a surgeon, like Dr. Parekh lood at your CD as well? Did he explain the blood results to you so that you understand why he came to the conclusion that it was not an insulinoma? Hopefully he did, it is just that I have seen Dr’s that said my 72 hour fasts did not conslusively prove that I had an insulinoma. And Dr. Parekh said that if he had looked at my other CT’s and MRI’s he could probably have found my tumor there as well, even though other doctors did not see it.
    Maybe it is just an extreme case of reactive hypoglycemia (I was told that too), being that you have family members with diabetes. If it is I would would want to see a nutritionist rather than a doctor to learn how to effective-ly control it. In response to John’s question, I’m sure the reccommendation to stay away from white flour was just because it turns to sugar so rapidly, rather than being a gluten problem.
    I sure that Dr. Singer is a good doctor. Bottom line is if he did not or could not say that it definitely was not an insulinoma, then I would press on until I knew for sure. You don’t want to live like I did for 15 years!

  4. Stacy

    When Mike was first taken to the emergency room after collapsing, the endo who came in to see him told us that he had insulinoma based on the blood tests alone, however, what followed were 2 CTs an MRI, which showed absolutely nothing, then the calcium arteriogram which showed a high insulin level coming from the head of the pancreas, and most recently the endoscopic ultrasound which eventually detected 2 very small tumours on the head of the pancreas.

    So my question is, if there is a tumour that has been found, and you have all these symptoms, what is the blood test not showing? We were told if the C Peptide and insulin were high while the glucose was low, that was enough to prove the existence of an insulinoma, even if it was so small that it was not visible on standard scanning methods.

    Coincidentally, I have been a reactive hypoglycemic for about 30 years and have learned to regulate myself with eating a healthy diet and recognizing the symptoms early. However, I have absolutely never been even remotely as sick as Mike gets and I can tell that these are two very different problems. At my worst, I get very grumpy and short tempered, or get weepy and very sad. Conversely, when I eat too much refined sugar such as ice cream, or donuts, it is like I get drunk, particularly if I haven’t had something complex recently to balance the quick metabolizing of the high sugar. White sugar and white flour are not good for me, as I metabolize them too quickly, which then brings on the hypo. I find I keep well balanced following the GI diet and smaller meals more frequently keep me balanced. This regulates the high/low swings in blood sugar by having complex carbs, protein and lots and lots of veggies. It took most of my 20’s to learn to manage this problem, but it has become very natural and the only thing that really throws me off is high stress or illness. I have Mike still eating the GI diet, only he gets more food, more frequently because he needs it. The whole grains and high fibre work the best for both of us. And I sailed through pregnancy blood sugar wise. I just needed to make sure I ate frequently and healthy. I think the most obvious difference between Mike and me is that I get giddy when I eat something very sweet, where as Mike gets higher blood sugar for a short time but doesn’t seem to get the same euphoria from it. Mike has always known if I needed to eat, by how grumpy I got.

    I don’t know if that helps you much at all, but I have not had a hard life managing my blood sugar, if I just stay a bit aware. It seems to me if the blood tests are not showing the right combination of highs and lows, then maybe it is not insulinoma. I certainly was not thinking hypoglycemia when faced with Mike’s symptoms as he was collapsing. He had such low energy and had been sluggish for a long time, and kept telling me he felt like he had a low grade flu. What tipped him off the scale was the fact that I tried reducing his calories, because he was gaining so much weight and that was enough to push his blood sugar too far down. It appeared to me to be a stroke because he was speaking gibberish and staggering on his feet.

    Well, enough of my two cents worth! Good luck figuring it all out.

    Heidi

  5. Hi, Stacy.

    I really feel for you after this inconclusive and really distressing diagnosis. Let me say that what I dreaded most after all the long-awaited consultations and scans was a non verdict! I had three scans in quick succession, MRI, octreotide and CT, and I learnt only afterwards that the surgeon and endocrinologist were hoping for a two-way concordance, two out of the three showing the insulinoma.
    As it turned out, the MRI was first reported clear both to my doctor and to me, the octreo showed nothing at all and the CT was only fairly conclusive – then another endocrinologist re-read the MRI and there was the insulinoma, shadowy, small but definitely there. Bingo! 2 out of 3!
    So ask again – and ask again and again. You should not have to merely live with these debilitating episodes and all the worry about the future. Get a second opinion – a second and third reading of the scans. In the UK we are allowed to ask for a second opinion – are you?
    The weight gain is a serious concern, too. It’s inevitable with all those snacks and midnight food intakes. I put on so much weight, all around my midriff which, as a basically skinny guy, I hated Since the operation it’s all gone. All of it!
    I am a coeliac – diagnosed in 2004 – so I am well used to a wheat-free, gluten-free diet – but what’s that issue with you and white flour? That’s new to me. I know of know correlation of insulinoma and coeliac or wheat intolerance. Anyone else been told that?
    I have completed my first week back at work – unscathed and strong.

    best wishes to Stacy and all of us

    John

  6. Hi everyone- thank you for your thoughts and prayers for my appt to USC.

    So, my appointment was bitter-sweet. He is a GREAT doctor and the most thorough doctor I have seen thus far. He said I have an extreme case of reactive hypoglycemia and after looking over my blood work does not think I have an insulinoma. He said there is a 7 x 7 growth on my pancreas and he drew a picture of its size, the size of a green pea. My husband and I had so many questions. There is a growth, and all of the symptoms and signs but no insulinoma? So, my husband asked if I will have to live my life with these crazy highs and lows and many trips to the hospital when I become incoherent when my sugar drops. We really want answers. Of course no one wants an insulinoma I am just thinking that once you have a diagnosis and know that you can return to your normal self there is hope and relief somewhere in sight.

    He is going to look over my records for a week since he doesn’t know me and we will figure out what else it could be. He was at a loss for what else it could be besides reactive hypoglycemia and I already knew that. He said the blood work would show if there was an insulinoma and the growth is just a little nodule that is doing nothing to my pancreas. So, as I went to be shaky, sick and low and woke up this morning ok and then sick and low after an hour- I am kind of sad–I just want a doctor to tell me they can help me get well. He just told me I may have to live with a really bad case of low blood sugar and to eat every two hours and eat no foods made with white flour. I told him about my weight gain and he said I will continue to gain weight due to my constant need for food to maintain.

    He asked if I plan to have more kids and I told him I do after I get to the bottom of this situation. He told me to go ahead and get pregnant and I will be fine. Knowing how sick I get on almost a daily basis I am going to wait for better answers.

  7. Hi all,

    Thanks for the feedback regarding possible diabetes after surgery. I guess there will always be a risk, but that this is much greater if some of the pancreas needs to be removed.

    In any case, I now have a CD with pictures from my MRI scan, which finally provided some detailed information about my insulinoma. It was found during an endoscopic ultrasound, but both a CT scan and an Octreo scan showed no evidence of it. But with the CD I now have something to show surgeons, who have experience with these types of operations – in particular laparoscopic operations (no one performs laparosocpic operations in my little country of Denmark). Unfortunately, my prospective foreign surgeon is away for the next couple of weeks.

    So given that it will be a while before I get some more information and can start planning my surgery, I’ve decided to take my fiancée on a holiday – and we’ve decided on Florida. And I’ll be bringing snacks with plenty of carbohydrates 🙂

    Best of luck everyone,
    Nicolai

  8. Nicolai, I had high sugars for about 3-4 days post surgery and since then they have been fine. My surgeon threatened the nurses that they were not to give me insulin unless speaking to her first and I would not get insulin even then. I had to laugh. Prior to the start of the insulinoma symptoms my fasting sugars had started to climb. My physician was watching it to see if I was going to develop diabetes. I was overweight and was not exercising or eating right. How surprising that my fasting sugars went from a 110 to a 41 after the insulinoma developed.

    My stent placement is scheduled for Thursday 3/5 and it can’t some soon enough. I told them if there is a cancellation to please move me up if possible. I am willing to be NPO until then just in case. Just kidding……. Did any of you have a bout of depression after. I am in quite a low funk right now. I cry easily and don’t feel like eating so I know I am depressed. Being a nurse I know I need to walk, get out of the house, eat anyway, and all that stuff. But knowing and doing is a yard away from itself. My surgeon suggests I write out the whole experience with procedures, events, feelings, etc. She thinks getting it on paper will help me get beyond this, that I may be suffering a bit of post traumatic stress syndrome. Thanks so much…..

  9. Stacy,

    I hope you are feeling better. I had walking pneumonia, I know how it can really wipe you out!

    I’m anxious to hear what Dr. Singer had to say…

  10. Heidi
    i am so glad that you all got the great news of the surgery date, and are making all the preparations! Best wishes to you both!
    Jackie
    i am wondering if you heard from your new specialist, and they can soon help you, it sounds like this stubborn stent is the only thing holding you back from a full recovery… and once it is taken care of you will be on the road to feeling close to perfect!!
    Nicolai,
    My tumor was in the head of my pancreas, and was told by my surgeon that there is always a risk of becoming diabetic after surgery, but not likely in my situation. They removed a very small portion of my pancreas and nothing else. Thankfully i made a full recovery. I do not know how big your tumor is right now, but it seems to me as it gets bigger it not only causes more problems and symptoms, but there may be more things involved to remove it.
    Stacy,
    I am anxious to here what you heard at your appointment at UCS yesterday……
    Good luck everyone!
    Pamela

  11. Sorry but I think I confused some people , So I name myself “Kim B” I had a distal pancreatectomy to remove my insulinoma on feb 2 2006 whitch left me type 2 diabetic. At the time the doc’s never said anything about the risk. It was only after the surgury that they said it should “fix” itself,but it didn’t. In my research about this I have found that the risk of geting diabetes is small. So I was just curious if anyone out there has—Cheers–Kim B

  12. I was responding to those queries from Kim 26 Feb 09 and Nicolai same date about diabetes as a follow-up to insulinoma surgery – there appears to be a time delay on the forum with postings getting held up…

    I wish all of you/us well
    John

  13. This is the other Kim. Not sure what you meant John by writing a note to Kim & Nicolai … AFter my surgery my blood sugar was quite high but eventually (a week or so) it settled down.

    Stacy – thinking of you today and I really hope that you get some answers.

    Good luck to Jackie and

    Great news Heidi and Mark!

  14. I just wrote a reassuring note addressed to Kim and Nicolai – detailing my experience with post-op diabetes – but it disappeared, both the writing and the diabetes!

    In a few words, what I said was that it probably depends on how much pancreas gets removed and how quickly your pancreas switches back on post-op.

    In my case I was lucky…

    Good luck to all – the outcome is infinitely better than the lead-up!

    John

  15. Kim,

    I haven’t been through surgery yet, but the question about diabetes is quite important I think. My insulinoma symptoms are relatively mild, and I really don’t want to go through surgery just to end up with diabetes (and possibly without a spleen as well).

    One surgeon said that even if they remove part of the pancreas, there is no risk of diabetes. Another surgeon suggested that only with enucleation (removing only the tumor and nothing else) will there be no (or very little) chance of becomming diabetic.

    So I’d really appreciate if someone has more feedback on this issue.

    Good luck everyone,
    Nicolai

  16. John – Exactly, drains can be our best source of information about what’s going on in there. As I said before, there are specific indications for drains. You already told us that you had an abscess and it was drained with a drain (LOL).

    Most of the times, a drain will work to quantify and see physical characteristics of the collected fluids and if something went wrong (i.e. a pancreatic fistula) we can control its output which is the first step in fistula treatment (to control its output).

    Best wishes to all of you, specially those facing surgery.

  17. I had my insulinoma removed feb 2 2006 doing great but I am now type 2 diabetic– no prob with that but was wondering if anyone else has become diabetic?

  18. Hello everyone- I am going to USC for my 3rd opinion tomorrow morning. I am a little nervous. I am trying to think of everything to ask. I don’t want to forget anything. I am definitely going to ask about the possibility of an insulinoma if blood results don’t show it after a fasting blood sugar test. I am also going to review the finding of UCLA endoscopic ultra sound of a growth on my pancreas. I also want to ask that he tell me what tests I can still take to find out if I have an insulinoma or not.

    Any suggestions for what I should ask since so many of you have dealt with this for so long?

  19. Hello All,
    Jackie!,
    Glad that you are feeling encorouged and I really hope you get a call back real soon as it certainly sounds like you need this sorting as quickly as poss.
    Heidi,
    That such good news that Mike is getting his surgery is earlier than was scheduled. My thoughts and prayer are with him and nd all your family for the weeks ahead.
    Love to all,

    Janet xx

  20. I am being referred to a specialist in Dallas to place another stent. I really appreciate the referral from my current doctor so that we can get another set of eyes on this one. The CV for this physician is impressive and I was really encouraged. I am waiting to get a call back to set up the initial appointment and the waiting is awful. To them I am a new patient, to me I am 5 weeks into a situation that I need a resolution soon. Waiting has never been a strong suit for me.

    Heidi that is great great news that Mike is going in sooner for his operation. My best wishes for both of you and you will be in my prayers.

  21. Wow, sometimes things just start happening when you think you don’t have to think about it for weeks or months!

    Mike’s surgeon called this morning to ask if he could be in Vancouver on March 19th at 5:45 am as they had a slot come open and wanted to get him in sooner if possible. Of course, the answer is YES!

    That week is our school’s spring break, so our son wants to come with us vs. sitting at home alone and wondering what is going on (and I think it will alleviate his stress if he is there too). I have been scurrying around to find pet care for the cats and dog, and making flight arrangements today. Thank heavens for credit cards when you need to book everything online and in a rush.

    John, it is just wonderful to hear that you are back to work at the 6 week mark and feeling normal – abcess, drains and all.

    Let’s hear it for all the successful graduations from this difficult illness!

    Heidi

  22. This discussion about drains is intriguing! I had a drain in for about a week after initial surgery, a thick pipe which deposited unpleasant pinkish-brown goo – but only a little each day. When it was taken out, in time for me to go home, I did not look, but my wife did and was astonished at how long it was, how deep it went and how much stuff came out with it!

    Then, ten days later, I had to have another, much thinner drain to get the last of the abscess out, this one in there for over a week. It needed daily aspiration, sucking stuff out with a syringe before flushing with saline, a real ‘business’ which I got wrong too often, either when undoing the taps, or while squirting the solution in, remembering to wipe everything with a sterile swab, I succeeded in breaking the connector and having to go to casualty to get a new one which was enormous, a three-way tap effort – horrible! Eventually it was all taken out – and that hurt!

    As I wrote once before, these drains allow you to see stuff you shouldn’t be able to see… but they do allow stuff to get out. Better out than in!!!!

    Let the surgeon decide what’s best for you. I don’t recommend arguing with these guys…

    Afterwards, it all fades into a mish-mash anyway. I can genuinely say that, six weeks on, I am back to work – and thrilled to be living a normal life.

    My warm good wishes to all – especially those about to seek help and those about to go into sugery…
    John

  24. I understand that drains have “always” been done. What I am saying is that my doctor said that is the old way to do it and that he has found that they are not necessary. He said the leaking fluid causes less problems than the drains do. I had the full incision with no drains and had no complications at all.

  25. Stacy, I too have you in my thoughts and prayers that this physician will have all the answers and you can start preparing for getting your life back. Pamela’s advice is awesome and I totally agree. We will anxiously await word from you. Hang in there.

  26. Stacy,
    I would just like to echo the thoughts of others on here and wish you all the best on Thursday when you see the endo. As Pamela said, make sure you have all your questions written down. It is so easy when you sit in front of these doctors it is easy for all those important details to just disapper from your head. My thoughts and prayers will be with you on Thursday and I so hope that it will help to move you closer to getting your life back. This illness is such a frustrating one and we all know so well how these symptons reek havoc in your life. Take care,
    Love Janet

  27. Stacy,
    Your third endo? Well perhaps as is said… threes a charm!
    If you have not already done so, make sure you have a copy of all your medical records, scans, blood work, tests, blood sugar readings, and if not to much trouble another seperate folder with this insulinoma blogs from the forum printed out…. it is long, but at least you know it is in the doctors hands. And i know you said you had a-lot of questions… i would make sure you had them all written down, just so you do not forget any of them. I feel very hopeful and strong that you will get the long waited answers you need to get so that you can move forward and be on the road to a healthy life!!
    prayers and best wishes to you!
    Dr Jon Mikel,
    Thank you! You are greatly appreciated. Without this forum and the encouragement and support and guidance i received almost a year ago in march, i do not know what my fate would have been. God bless you and all the friends i have bonded with!
    Pamela

  28. Hello everyone- just wanted to let you all know I will be seeing an Endocrinologist at USC this coming Thursday for a 3rd opinion. I feel like I have to start all over explaining my issues, but I am praying for a better outcome. I will be seeing Dr. Peter Singer he is supposed to be very good.

    My sugar has been crazy this week because I have walking pneumonia. I am doing all in my power to feel good enough to go Thursday. I have been waiting for this appointment for a long time now.

    Thank you all for your posts on Insulinoma I have really learned alot and I have alot of questions to ask the doctor on Thursday now.

  29. Jon,

    Thank you for commenting! I’m sure everyone appreciates hearing from your expertise.
    I want to thank you again for being responsible for so many of us finding our answers to insulinoma through this site. I do not believe that I would be healed from my insulinoma today without the information provided through Unbounded Medicine or without all the support and encouragement I received from all the awesome contributors to this blog.
    I would not think that there could be another site out there that would have done that for me.
    It has done my heart good to be able to see pictures through facebook of some of the wonderful people from all over that have been there for me through it all.
    Peggy

  30. Of course this site is better than Facebook… facebook is just a social network, not a source of information.

    Laura: There are specific indications for drains, this is well studied with numerous clinical trials, most of them favors drains under certain conditions. In this type of surgery the first indication would be: a difficult dissection of the tumor (insulinoma). Heidi is right, leakage is the most common complication, and in order to diagnose and treat early and properly the drain will tell you. So, if the surgeon thinks it may be a leakage, I bet a drain will be placed and if nothing drains, it will be removed in the third post-op day.

  31. hello all, I had one comment, if you read the above posts, you will see many problems and complications cause by drains. My surgeon does not believe in them. I did not have one and I had no problems at all. He feels they cause more problems than they solve. It might be worth it to have a conversation with your surgeon before surgery as to why he thinks he needs to have drains.

    Laura

  32. Heidi, I can so identify with your husband. I was terrified to find that they could not do a laparascope. I guess I was in a kind of denial and thought this could not be that big a deal. Now that I am almost 5 weeks past the surgery I can say it is well worth it. They were able to see the whole pancreas and make sure there were no other issues there. I also had them look at my gall bladder and it turned out to be badly diseased so they removed that. Unfortunately the leaking is a problem and that is what I am facing now. That in itself is not that bad. You just have to deal with the external drain, keeping it emptied and I have a small dressing I have to change each day. My surgeon says that they heal on their own but it can take weeks. My doctor had a gastro guy place a stent to help the healing process but so far the stent won’t go in and stay in place. It seems I am one of very few that has a pancreatic duct with a branch on it. Go figure. I see the gastro guy tomorrow to see what he suggests. The great thing is my sugars are normal and I am beginning to get my life back. Even with the big incision, I felt better than I ever felt with the tumor.

    John, I went on facebook and opened an account and I have to agree I really like our blog here better. It was good to see faces to people but somehow it is not the same. I think it is because this site has meant so much to me that somehow facebook just pales in comparison. It is great to see kids, grandkids, and hobbies but this site gave me hope, let me know I was not alone and that if you could do it, I could too. We should make sure that each of our physicians have this website and that they give it out to all new patients. That way if they see value they can join the discussions.

    Hope all of you are having a great week. For those of you that did have leaking issues, what was the sign that it was resolving itself. Did it decrease quickly or gradually over time. I know my doctors will have some idea for me tomorrow but was just wondering what happened with any of you. Take care everyone.

  33. Hi everyone,

    We got a call from Mike’s surgeon’s office today, and there is the good news and the bad news.

    Good – the surgery will definitely be in April; once surgeon’s office gets his April operating room dates from the hospital Mike goes on the calendar.

    Bad – the surgeon has definitely ruled out laparoscopic surgery due to location of tumours. Mike’s anxiety has gone way up this am and I have been reminding him that open surgery is quite normal for insulinomas, and his surgeon told him 3-5 days in hospital, baring complications. Although reading all your experiences here, I hope that is not too optimistic (I am definitely not sharing that thought with Mike though). Dr. Scudamore told him that the most common complication is leakage which seems to have cropped up in a lot of your comments here.

    Well, I must run out and start shovelling snow. We got 5 cm (2 in) last night with more coming tonight. it is -9C (15F) right now, and supposed to go down to -25C (-11F) by Wednesday night. Oh, how I long for spring thaw and the chance to work off stress in my garden. I don’t expect to see defrosted ground until the beginning of May though.

    Bye for now!

    Heidi

  34. Peggy,

    All I can say is, I love you guys! All of you. After reading the posts this last week, every feeling and thought that I had, has been expressed!
    I am so excited to see some of you on facebook! I can’t wait until my 17 yr old daughter wakes up to show me how to use it! 🙂 (I haven’t a clue how it works) Since I don’t have my own page, I’m assuming I will have to search for you through hers, if that is possible. This is the first time that people have been putting there last names on this blog..I guess that is ok to do? I don’t want to be paranoid, I just don’t understand the risks well enough.

    Pam,
    Come and visit your in laws! I’ll bet they really miss you. 🙂 It would be great to meet in person. I feel honored that I would be the first ‘friend’ that you look up when you come! I hope you can make it soon, spring beak is coming… but anytime would be a good time. You could see my home and tell me if you think we could make it work for a party. Thank you for offering yours, as well as helping with travel expenses. That would be the only thing holding me back, now that I have confidence in my ability to travel.

    I’m sure we could raise awareness through facebook, not sure how, but I’ll bet my daughter does. She recently moved out of state, but isn’t employed yet…being a jounalist, I’ll bet she could use a project! If we threw a party here, she does have contacts that might help get the news out…
    any ideas or opinions? In the mean time, I’ll have her make me a facebook page!

    “See” you all soon,
    Peggy

  35. I realise that my adverse reaction to the involvement of Facebook in the insulinoma forum has caused quite a reaction, both for and against.

    Over a whole week there has been scarcely any real insulinoma news here, no new ideas or views, no reports either from sufferers or graduates (I love that expression – so right!), from new people or long-time writers – and that just might signal to us that some people, new and old, find the very mention of Facebook inappropriate and confusing, off-putting and trivialising.

    I would criticise no-one for using Facebook for whatever reasons they like. But I hope to read important stuff here over the next weeks – in the proper spirit of the forum which we have all found so helpful and informative. There is certainly no lack of personal contact here. We all found one another through this one great and informative web-site and can best spread the word within that web-site in a focused, sensitive and serious way.

    Best wishes and good health from this insulinomiac who, just two days ago and only 6 weeks after surgery, got more or less signed off by his surgeon, with the promise of an ultrasound scan in a month to check that the abscess is gone, and a CT scan in 6 months to check I am still all clear – a good result, I feel. The surgeon himself is mighty pleased with himself, and who am I to deny him that satisfaction?

    John

  36. If I may, I think the point here is that perhaps more “lighthearted” discussions are best left to Facebook etc. and that on this blog we try to stay to the point so that people who are seeking information, reassurance and a community devoted to insulinomiacs will not have to sift through entries for relevant material. I think this is a valed point though I also see a place in this world for Facebook. Now we know how to find each other there.

  37. Hi everyone,
    Insulinoma is a serious condition as all of us on here know from experience, but maybe there is a fair chunk of childishness left in me, but sometimes I have need to be not so serious, just to stay sane. In fact there is a time and place for both. I am on facebook but am 53, yet on the other hand find this site so wonderful to be able to share our experiences, joys and sorrows with others who know just what symptons we have had to endure. We all have more than one approach to life and as well as the serious discussions it is lovely too to put faces to some of those on here. In fact it is wonderful to meet everyone, some just anonymous that post on here and others that want to share our physical images. We have all been through pretty emotive stuff so it stands to sense that we vary on how we wish to share it. Thanks to all on here and facebook for sharing their thoughts. I have lived with insulinoma on and off since my first one at 17. I thought I would never have the opportunity of meeting or discussing it with any esle who had actually experienced it so I feel very blessed to have hte opportunity. So whether on face book , on here , or both , ren’t we blessed to have found ech other. Praise the Lord!

    Janet xx

  38. hello all
    Angie i could not agree with you more!! Although i am not a silly teenager, but a 36 year old grown woman with two children… i love to know who i have been sharing my experiences with for the past year (i am not insecure…) and i feel if facebook has got the attention it has, why not put the word out there more, and make sure while doing it, people are informed correctly! Facebook could not possibly take away from this forum or the the personal experiences we have all shared. I see no harm in meeting each other, and sharing our family and lives on facebook.. and still writing and helping newcomers and our friends with our knowledge and experiences on this forum!
    And like Heidi said Facebook is possibly a good way to direct people who need more information to our forum! It can’t possibly hurt anything, and well lets face it, if someone is narrow minded, or close-minded they do not have to participate in such things!
    Till next time,
    Pamela

  39. Hi John

    I echo your sentiments about Facebook, which I consider frivolous and lacking in real content. Maybe i am also too old (age 49) to feel comfortable in that format. However, the one thing that it may do is to direct people who need more information to places like this one, which has serious conversations about this rare, but challenging, health problem.

    The reality is that Insulinoma is a relatively rare condition as noted on the original text of this blog and by all the doctors we have encountered (approximately 1/250,000 pop). The truth about rarity is that we are not going to get it researched or much public attention as it is not life-threatening to the larger population, or cost effective for anyone to do so. There are no other effective treatments than finding the damn tumour and getting it cut out. At least it occurs frequently enough that it is diagnosable, despite the challenges it presents to the ordinary family doctor in getting their patients to the right resources. Some of you have had harder trips to diagnosis than others, but it seems that we all have been able to persevere long enough to get to the right result. It has also been very interesting to see the similarities and differences around the world!

    When I read this blog, I see hope in the knowledge that my husband’s illness is just like yours, and I can extrapolate that his recovery will also be similar as well. That is so comforting right now as we wait for his surgery date.

    I am very grateful to have found this blog, since it has given me both hope and knowledge that, although Mike and I felt so alone in our struggles to find solutions in our small community, we are not alone in the world. As I searched the internet to find information about this illness, this was the only place I got personal information and ideas. Other sites and citations were about dogs, ferrets or just basic blurbs describing the medical definition without any information on how it is to go through this process. By sharing our knowledge and experiences with each other, we have all benefited from our participation in this remarkable situation. I don’t think Facebook would give us that level of detail but for those who feel a need to have individual contact with each other, great, use Facebook and enjoy! Otherwise, let’s definitely keep this page going, for ourselves and to help those who follow us into this strange club.

    PS, thanks to those of you who are Insulinoma graduates and are still participating in the conversations. It has been nice to hear how everyone is doing over the long term as well as the short.

    Heidi

  40. Point taken, Angie – and apologies if I offended anyone! It was just that a whole series of emails came to my inbox, all of them brief and only relating to Facebook which is a place that older sufferers do not inhabit or wish to understand.

    I was not criticising anyone in particular, merely saying that our condition is more important and more profound than Facebook – and that Facebook might be a turn-off to many a new visitor. Information and experience need a serious forum – with a few laughs along the way, naturally!

    Also, speaking as a nearly 60-year-old, I don’t think everyone wants to have their face up there either. A sort of personal anonymity is a healthy thing. By all means go down the Facebook path, exploit it and use it – but don’t expect all to love it with you.

    Good luck to all – and good health.

    John

  41. John

    I hardly call our comments in the last two days “shallow”.
    We were originally discussing how to get more information “out there” and Facebook is a great forum for many serious subjects. So a few of us have been interested to put names to faces and I cant see why we should be criticized.

    This forum is still a very informative and personal place but it can be light hearted at times too.

    I have been on here from the very very beginning and have read every single comment, we have had a few laughs and many tears, please do not judge on a few light hearted comments over a few hours.

    Facebook can not replace this forum for any of us but there are certainly people on it that are looking for information and if we can help then so be it.

    Regards Angie

  42. I have really valued all the comment, support, exchange of ideas, the shared experiences and genuine friendships and sympathies on this forum over the last few months – but recently it’s all about Facebook with its misinformation, shallowness and chatty silliness! Let’s keep this real and correct and serious.

    Not everyone loves Facebook; not everyone wishes to take part in its superficial drivel.

    Our shared experience of insulinoma is far more important and valuable than that. It deserves better! Had I read all this Facebook stuff when I first located this forum I’d have run a mile and avoided it thereafter. Thankfully, the discussion at that time, and since, was fascinating, deep, personal, mutually informative and meaningful. That is what’s needed – and so brilliant. Keep it so!

    Leave the twitter to the teenagers, please.
    My warmest good wishes to all.

    John

  43. Hi All,
    Agree with your sentiments, about the use of the word cancer. We certainly are the best on here!
    Love to all.

    Janet xx

  44. Angie,

    Here, here!!!! (Isn’t that what you all say in the UK?)

    I’m surprised especially because she’s a lawyer and I thought they were sticklers for facts (as opposed to plain old sticks-in-the-mud like me!)!

  45. Kim

    I totally agree – at the end of the day insulinoma is a tumor not a cancer as far as we are concerned and they only can turn cancerous. Really i thought the site may benefit from us especially as I followed the other link and there was a paragraph about insulinoma and that was it!

    We are the Best !!!! Ha Ha and the friendliest!!!

    Angie

  46. Hi Angie,

    Thanks for the link to the insulinoma facebook page. I have seen this woman’s blog but it is not well known apparently.

    It bothers me that she has put the words rare cancer with insulinoma since very few insulinomas are cancerous from what I understand. I just think it is important to be accurate about things like this.

    You resident Stick-in-the-Mud,

    Kim

  47. Ive just done a search on facebook for insulinoma.
    Look up “Insulinoma – rare cancer”

    There are five members and me now!!

    It will help find each other!

    Angie

  48. Jackie
    Cant find you easily, tried Grapevine TX and gave me no matches… look me up under my email “angieanco@talktalk.net”

    It mystifies me too!!! especially searching for someone with no picture and no clue other than their name amongst 400 people!!!

    Angie

  49. I am horrible with facebook. I can’t find any of you. See if you can find me. Jackie Gray, Grapevine, TX. Looks like I need to work on this a bit more.

  50. Jackie and All!

    Look for me too, Im a little new to facebook ! Getting to grips with it tho!! Its great to put faces and lives with the people on here.
    Janet found me so i must be easy to find – “Angie Phillips” or if you find Janet you can get mutual friends.

    Its somewhere else for people to find us!

    Angie

  51. I have never been involved with facebook or any of the other sites. I will see what I can do to get on and find everyone. I am so bored at home so this will be fun. It is such a popular site that I can see it as a great venue to get the word out about this disease. I found this site when googling the disease and it was a life saver for me. All of you have made such a difference and I would love to meet all of you.

  52. Hi All!
    I am on facebook if you want to put a face to my name. I am Janet Bennett if you want to add me. I have requested Angie and Pamela to add me to their list of friends, Have not had the best of weeks , but keep struggling on like everyone esle on here! Love nd prayers to all.
    Love Janet xx

  53. Pamela

    Ha !! You did make me laugh! Perhaps we should put our scars on!!!
    Thanks for the compliments – they are only the good photos! I hate photos of me as I always have that double chin or my eyes are always shut!!! You look very good yourself anyway! and the girls are really gorgeous!!

    We all should get a map together and plot ourselves!! We are coming to Orlando next easter 2010 but I would imagine its miles and miles away from you. You never know tho!! Today Facebook, tomorrow the world!!!!!

    AngieXX

  54. Angie,
    It is so nice to have a face to the name!!! Glad to see you on facebook!! You are so pretty, and your sons are so handsome! what a beautiful family! I love the picture of you with the hat!! Do you know how we would start our own cause??? see you here.. and on facebook!
    xoxox pamela

  55. Peggy and Jackie- Thank you so much for sharing your own experiences. I often feel so alone and this site does it fact offer so much support. Thank you for your prayers.

  56. hello everyone!
    stacy
    there was never any rhyme or reason why my sugar would be better some days even weeks at a time!!! i always knew stress made it drop faster than anything, which in turn, i think the stress of having a hypo attack gave me really bad anxiety. I know of one seizer i had for sure, and hundreds of times as others described, felt as though i were on the brink or edge of having one!!! My menstrual cycle was also always a bad time for my sugars. and i could under no circumstances ever drink alcohol! That would be a disaster waiting to happen! Being that a doctor convinced me that it was my fault and my diet to be the cause of this horrible disease for 5 years… i did a-lot of experimenting with food and trying to figure out what to eat and how kept my sugars up… when finally i just gave up and ate everything and anything, including a dr. pepper to wash down my meal! I believe this disease definitly progresses with time. The bigger and longer you have had the tumor, the more it affect you and the more food and carbs and sugar it takes!! As John and peggy were saying, and many others of you, we truly do need to raise awareness, and do our part in spreading the word! Last summer i mentioned a party and helping any one with plane costs to come! I too. .would love to still offer my hose as well, or even help with a party at Peggys! That is so nice of you Peggy!!! We have not been to San Monica (where my husband family is) in over a year, but still hoping to go soon! You will be the first friend i will be contacting! I have always wanted to meet and talk to someone who has shared this same experience! So far and few we all are!
    Also, im not sure if any of you are on facebook. im not usually into all that kinda stuff but recently got on there and it is a great way to have a cause or belief and raise awareness!!!!
    Im really bad on the computer, and have only a few photographs on there, but as soon as i figure out the whole facebook thing i want to put insulinoma on my facebook home page, and talk about it more! If any of you decide to go on facebook, invite me (pamela thompson moayedi) to be your friend and we can get our cause on there and raise awareness! So many people are on it!!
    Jackie,
    it makes me so happy to hear you are doing well!! The more days that pass the better you will feel! God bless to you all!!!!
    Pamela

  57. Stacy, I would have weeks when nothing happened. I don’t think I ate that differently but for some reason my sugar did not bottom out and I felt ok. Then one day, boom. I was a wreck. I think as time goes on the symptoms do get worse and more frequent. I remember once thinking that I felt like if I layed down I would have a seizure. I could almost feel the edges of it. I never did have one but it was so scary. You will be in my prayers for your appointment on the 26th. Don’t give up until you get your answers.

  58. Stacy,

    Yes, closing your eyes at night can be very scary after having had a seizure! Also, if my sugar was low at all before I fell asleep, I would have anxiety sometimes, weird thoughts, trippy dreams, only I wasn’t asleep! You can have all sorts of different symptoms. I remember one night, I thought for sure I had God all figured out, and could completely understand him! A few times I actually felt like I was floating above my body. Another time I felt I could ‘bounce’ off the floor and sort of fly…so don’t think that any of your feelings are abnormal, if your sugar is low. Unfortunately your friends and family are probably not ever going to be able to understand the condition, or how deeply it effects you. God understands, and He has led you here, just as he is working all things together for His purposes. I will pray for your appointment on the 26th. Keep believing.

    Heidi,
    The wait is hard, but trust the timing will be perfect for Mike.

    Jackie, I celebrated my 1 year anniversary being ‘normal’ an February 14th! Good idea to show the sight to your doctor!

    John,
    It’s my dream to get the word out about this crazy disease!
    If anyone wants to throw a party, I’ll offer my house in southern CA. Maybe have my daughter write a story…

  59. Jackie- I am glad to hear you are feeling better. The whole surgery things sounds scary. It is good to hear positive things about it all.

    I am going to USC on the 26th of this month for yet another opinion about what is going on with me. This will be the 3rd Endocrinologist I will have seen, but I need answers and I am praying and believeing I will get better answers this time.

    Have any of you experience really good weeks where it feels like your blood sugar is good? I have been having sugar readings in the low 80’s and I am used to contant 70’s-50’s even. It has been unusual, but I still feel bad sometimes. Unfortunately, today I woke up feeling bad. My sugar was good it was 82. I still felt sick to my stomach and laid down when I got up about an hour later my sugar was 76 and I was extremely dizzy and I fell on the floor. I have been doing so well and now it seems like things are trying to get weird again. It is hard to get really excited when I have a good week. It seems the low sugars and sick feeling are waiting to take over.

    I have also been feeling scared to close my eyes at night because I had a seizure and a bad anxiety attack the day after the seizure. I have this weird feeling sometimes when I close my eyes. Once I am asleep I have been sleeping very hard. This is all scary and I thought I’d post about it in hopes that someone can relate. It is so hard to share what I feel with friends and family because they do not understand this condition. Hope all of you are well. Thank you for the support and for taking your time to post-It really helps

  60. Just wanted to say hi to all. A quick update. I am feeling much better. The last stent took me back a few days but I can say I am really feeling like the old me prior to the insulinoma. The last hurdle will be the drain and it may be a bit before that comes out. The journey has been worth everything. Several of you have said you do not even know all your symptoms until they are gone. Boy, that is the truth. I had no idea how bad I actually felt all the time. My best wishes to all of you. Hope you are all recovering or on your way to getting diagnosed and treated.

  61. I have no clue about a charity or research going on. It would be good to know. This site is so useful that I plan to give it to the endocrinologist and my surgeon to give to any patients that are having this problem. It has been a life saver for me. I just had a overnight stay to get my stent replaced. I think it was successful but boy did it take the wind out of my sails. Rest and relaxation is the order and I am taking that seriously. I hope all had a wonderful Valentine’s Day. I got to come home on Valentine’s so mine was really good.

  62. Is there a charity or fund-raising facility out there for research into insulinoma? I just get the feeling that surgeons and, especially, doctors, are forced to work in the dark with this condition. Each of us is adding to the pool of experience – but we are so few! No doctor is going to see more than a handful of cases during his entire career. I certainly felt that my surgeon was trying out new ideas on me and that my successor would benefit – that’s fine – but a pool of such experiences must be better for all of us.

    Love to all on Valentine’s Day!

    John

  63. John, what you describe makes me think we are twins. Amazing that this is so distinctive. You have encouraged me so much to just keep on each day with a wonderful end in site. I get my staples out on Friday and I had thought about getting some Vitamin E oil to work on the scar. Not that I plan to ever wear a bikini but just thought it might soften it some. The scar is so minor compared to the horrible events the last year. I am still on medical leave for at least 3 weeks and will be returning to restricted work. I think April 1st I am on full function. But you know I am still calling and emailing and unoffically working now. I am so-o-o-o-o bored. I see each day that my sugar is normal a victory. I still check it once a day. Guess I just can’t believe that part is over. Congratulations on returning to your students. You will be even more enriching than before. I don’t know if it is the same for you but life is so much for precious to me now.

  64. I continue to read and marvel at people’s struggles to get diagnosis and treatment – and to share in people’s frustration, and their elation at each improvement and victory over this pernicious, debilitating and frightening condition. Jackie – how I appreciate your frustration with drains! They are such a drag, so ugly and so inconvenient, the dressings around them always a mess, the sight of what emerges so distressing – but when they are taken out, wow! Relief! real excitement!
    I lost my last one a week ago, the one which drained the abscess. I now have no holes at all, no dressings, nothing unsightly. Five weeks on from surgery, bruising remains all over my belly but is fading fast. I massage the main scars with vitamin E oil occasionally – someone said that was a good idea! – and am getting back to real, full life. My appetite is good and real where, for so long, it had been non-existent because of all the food I was forced to eat! This weekend I shall start with the private students. In two weeks I intend to return to teaching at school, just two days a week to start with. I am playing the piano every day – and can still play OK! Surprisingly the fingers don’t weaken even over two months, and techniques are not lost.
    Fatigue is still an issue but lessening. Tenderness still there inside but not bad at all.
    One month from now I shall celebrate my 60th birthday – and what a celebration that’ll be! This huge experience has dominated life for nearly a year – nothing compared with some of your experiences – but I feel like cheering out loud that I have beaten it – a victory!
    May all of you achieve that victory, too! It is a good feeling. I sympathise and share with all of you. Good luck!
    John

  65. I am scheduled to have my stent replaced on Friday with one that is longer. This one should cover the area and seal where the leak is. The hope is that it will facilitate the healing of that area. Boy, I hope so. I am so ready to get rid of the drain and I have not had it nearly as long as many of you. Hope all of you are having a great week.

  66. Heidi, I hope Mike can get moved up on the surgery list soon. What a difference this will make for him.

    I have a question for the group. If you went home with a drain how long before the amounts started to decrease. The last three days mine are increasing but I am eating more. I am concerned I am facing another stent placement. Just wondered what any of you have experienced. Mine go from 270 cc to up to 430 cc.

  67. Angie! We get at least that much snow every month from November to April here where I live. we were in London for a week in summer 2008, and I can imagine how bad it got. We do, however, we have snow plows and studded snow tires on our cars. we can get down to -35 C, and have 30 cm in 24 hours on a regular basis. Lots of fun and good exercise shovelling the stuff.

    Right now, I am fine with how things are going. Mike’s situation doesn’t seem as dire as some of our other friends on this blog. He hasn’t had a black-out since that first one that I called the ambulance for. He is just exhausted, but we are so lucky that he had over 90 days of banked sick time that he has been able to use for rest days. Of course he has used quite a few since April 2008. He is so fed up (sorry for the pun), to have to eat constantly and the weight gain, but it does keep him functional. He just hates the finger pricks!

    At the beginning of this experience, it seemed that we were moving very slowly through the system, but we do feel that we have make a lot of progress in the last few weeks, just getting to the surgeon and having the EUS procedure. I guess it was most frustrating that we didn’t get any results from the first CTs and MRI scans. Now we have some answers and we just need the operation to fix it all.

    I do understand what the surgeon said about his cancer patients and liver transplants taking the highest priority. However, since this week’s meeting, Mike feels that he is on his surgeon’s radar and they are going to handle him with care and attention. So, now we are just waiting for that phone call and booking the flight for our run down to Vancouver at short notice.

    The good news is, we know that this is fixable! Everyone here who has been able to share their experiences with us rookies has given us hope that we are close to the solution and a return to our normal lives.

    Thanks,

    Heidi

  68. Heidi
    (sorry)
    My point was – before I started rambling- I would have thought you would be fairly high priority, this is classed as a life threatening condition especially if it progresses to black outs and other de-abilitating episodes!

    Good Luck

    Angie

  69. Jackie

    My op was 2 years ago on the 6th February!!! It has come round so quickly I cant believe it! The funny thing is we had a terrible snow storm the night after my op and I vividly remember waking up and looking out the hospital window to see this amazing amount of snow covering everything!
    This week in England, you must have heard, we had the same again!

    Kim

    I know what you mean as well about those feelings of being safe and secure in the hospital, I was in for two weeks and it was so easy in a way with no responsibility and I didnt have to think about outside problems and troubles. Although I wanted to go home to my family and boys, I was really scared to leave the security of the hospital. Even now if things are stressed and Im upset I almost long for that sanctuary! I can really imagine how people get institutionalised after being in hospital for along period of time especially if older and on their own.

    Heidi

    I felt that my Insulinoma was treated with quite a high priority, I think I said earlier that at the beginning of my diagnosis I didnt take it seriously but the hospital did! I then began to realise exactly what could happen. Really for the NHS to diagnose and treat me within 10 months was amazing. I read on here everyones experiences and thank my lucky stars i caught it when i did and that I had very few serious episodes. I think if it had gone on much longer things really would have taken a nasty turn, I now think my body was at its limits.

    Regards to everyone!
    XX
    Angie

  70. I don’t know if this is the right thing to ask but can everyone tell me when they had their surgery. I am a late comer to the site so don’t know all the timelines. I know that Sue is currently recovering but I am not sure who we have that is waiting to either be diagnosed or have surgery. I am just one of those people that have to catagorize I guess. Or it is the pain meds taking control. So if this sounds crazy just ignore it.

  71. Hi Everyone.
    So glad you are home and back on here Jackie so welcome back. Just so glad to hear you are now stepping up your recovery. Great news!

    Love Janet

  72. Jackie – Welcome Home!!!I know what you mean about feeling safe and secure in the hospital. With regard to your driving story, I remember going to a yoga class because a naturopath told me I was stressed out with responsibilities at home and needed to be in a space where someone else was in charge for a change. Well, the class wore me out and I was feeling pretty loopy by the time I wobbled to my car. Driving in my condition would have been challenging enough but wouldn’t you know there was a bike race going on and I had to manouver past bicycles all the way home. I was so scared! It was so hard to concentrate, I was so worried about hitting someone. I was totally freaked out by the time I got home. That’s why this illness is so dangerous because when you don’t know you are ill, you can get yourself into all kinds of predicaments.

    It’s been interesting hearing a bit about health care in Canada. I’m sure there are misconceptions on both sides so its good to hear from someone who’s actually going through it.

    Heidi – I’m so glad you feel comfortable with your doctor’s experience. That is so important! I’m sorry you have a wait but it must be good to know that you’re headed in the right direction.

  73. Heidi, I am so glad you are seeing progress. It is a great hope and I can tell you he and you will get your life back after surgery. Even post op I was 200% better than before surgery. So hang in there, tell him to eat, eat, eat. If I had a big hamburger and fries for lunch I did not have those attacks until right before dinner (amazing that now I could eat that stuff and had to eat that stuff I did not want it). I took glucose tablets with me everywhere and did not drive until I took my sugar. You just have to keep a close eye on the sugar so you don’t drop below you ability to logically thing what to do next. My surgeon asssures me I may lose up to 50 pounds just from having a successful surgery. I am down by 11 already. You probably already know this so forgive me if I am preaching to the choir.

    I have no idea how large my bill will be. I had one day in ICU and 13 in the hospital. They did an internal ultrasound during surgery and I had another CT scan and stent placement. I expect they will have to drop load the itemized statement by helicopter. Fortunately my husband has insurance through American Airlines. Their benefits were better than mine so I went with his. And he is retired military so we have that for secondary. I hope that covers most. But if not, once I am better I will be willing and able to work a second job and feel priviledged to do so because I feel so much better.

    All of you please have a blessed and happy day.

  74. Hi Peggy

    Actually, the doctors know, but we just haven’t been able to get the all details from them yet. The EUS was performed yesterday by a Dr. Weiss at VGH. Mike only met him at the beginning of his procedure while he was being sedated. Once he woke up in recovery, the Dr. was not available to talk to as he had squeezed Mike into a very busy surgery day (as a favour to Dr. S and this test is only available in Vancouver). Dr. Weiss left Mike a note saying he found two lesions, and Mike was to talk to Dr. Scudamore for more info.

    I just picked Mike up at airport and he was not able to reach Dr. S. at all today, as Dr. S was in surgery all day. But, we expect to be able to talk with him early next week to hear what the EUS actually showed.

    Based on the calcium stimulation test done in November, we are still assuming the tumour(s) are in the head of the pancreas, because that was the hot spot indicated at the time. He had already had 2 CT scans and 1 MRI done earlier in 2008, none of which found anything. Dr. S told Mike it is definitely insulinoma, and they would be able to get it out, he just would prefer to have the option of laprascopic if he can.

    Of course, we are antsy waiting to get the info from all these procedures, but Mike is just another patient in a large line-up of people on waiting lists for surgery dates to them. Dr. Scudamore’s specialty is doing liver and pancreatic cancer surgeries, and those are his priorities, since it is life-threatenlng. Mike is sick, but able to manage if he monitors and keeps himself fed properly, so we have to wait a little longer. Actually, this makes me feel more confident about Mike’s surgery, since Dr. S. is really experienced with pancreatic tumours and has dealt with insulinomas before.

    Ultimately we will be ok and I feel good that we at least are being taken seriously and haven’t had all the challenges some of you are experiencing in getting a firm diagnosis. Luckily, Mike’s illness has been recognized from the first time he collapsed and we are close to the final installment now.

    I think our biggest challenge is that while Canada is an enormous country, we have a very small and spread out population of only 35 /- million people, and our high level medical services are concentrated in the largest cities. If you don’t live in one of those centres, you have to travel long distances to get to the right people who can help you. Since Canada has a national health system, you are automatically prioritized based on how urgent your case is. Shorter waits for surgery for heart and cancer problems, a bit longer for everything else. We are lucky this is not a life or death situation, at least not yet, so we have to wait our turn. At least we will not be bankrupted but having to pay thousands of dollars to get his medical treatment or have to convince an insurance company that we need to see a specialist.

    Jackie, welcome back to your home – I bet it feels great to be back in your familiar surroundings.

    Bye again….

    Heidi

  75. I am home!!!! I asked for more time before they replaced the stent and the physicians agreed. And already the drainage is less. So it is highly possible I won’t need another stent. Can’t tell you how shocked I was to hear I was going home and was out of the hospital in two hours. And oddly was really scared. Two weeks in the hospital I guess had given me a kind of security there. Today is better and I am so excited to be home.

    Peggy, the symptoms you have are exactly what I experienced. The fatigue was awful. One day I drove around Dallas for an hour and could not figure how to get home. And I could not reason out how to pull over or use my cell phone. It was so scary. I also had cramping in my hands, foggy thoughts, and visual changed that made buildings lean or get really close together.

    The removed my gall bladder as well. It was nonfunctioning and the surgeon said it was so bad they probably would have not been able to do a laproscopy. I am expecting they will have to deliver my bill by special courier and several delivery people.

    Thanks everyone again for all your prayers and concerns. What a blessing you are all to my life. Next steps-remove staples, remove the stent and remove the drain. Can hardly wait.

  76. Hello all,

    So, so sad to hear about Angelique. We all have such a bond that in some ways brings us closer than others we encounter in life because we all understand what we’ve been through. We don’t know a lot about her personal life but I’m sure she leaves many with profound grief for her passing.

    John, glad to hear that you are on the mend.

    Sue & Jackie, I was so touched by your sons’ writing to keep us all informed, really nice. Hope you are doing OK.

    Crystal, welcome. You’ve stumbled onto a wonderful place. We’re glad you’re here and we love to help!

    Heidi, I ended up at Johns Hopkins to search for my tumor because they just weren’t finding it up here. I had a CT scan and an octreotide scan at JH and they were read by some very experienced radiologists. The first two tied – one said yes and one said no, the third one said if it’s not an accessory spleen (a mistake they made once), its an insulinoma. So I had a liver/spleen scan and the mass didn’t light up which meant that it wasn’t an accessory spleen. So they went ahead with surgery, not entirely convinced but enough so. Turns out there was an accessory spleen but not where the mass was. Makes me wonder about radiology up here – I had a CT scan and an endoscopic ultrasound here. I guess these tumors are very hard to find and you need the best equipment and the best radiologists to read the scans etc.

    Take care everyone!

    Kim

  77. peggy- Yes, they found a nodule in the head of my pancreas. The lab report from UCLA says it is a hyperechoic area in the pancreatic head that is 7 x 7. My current Endocrinologist read the results and my former Endo disregarded the results and told me I was fine and he would see me in 2 months. My current Endo said the nodule could be nothing because my blood tests don’t show an insulinoma. I have a small growth in my pituitary gland that has been there and has not grown for years. My doctor said the nodule in my pancreas can be compared to that growth and since nothing was done to remove that she doesn’t think this should be removed either.

    It is all so hard. I still don’t know if I could have an insulinoma without the 72 hour blood tests showing it. It is frustrating to be sick so much. I had a good two weeks though. I have been eating hard boiled eggs in the morning and peanut butter. Just trying to get enough protein to sustain me. I was getting low and wouldn’t feel it until it was too late. I live in constant fear of going too low while I am asleep.

    Thank you for your encouragement and concern. I am looking forward to seeing Dr. Singer at USC on the 26th. I am praying for answers and to not be turned away with nothing. I believe things will go well. His office already requested that I send all of my medical records directly to his personal fax. That is a good thing in my opinion.

    So Sorry to hear about Angelique-She was a caring woman

  78. I am happy to hear Sue is doing well and Jackie, are you home yet?

    Heidi, I don’t understand why they don’t know where Mikes tumor is located after having an EUS??

    I can’t believe Angelique is gone…she just posted on the 25th!? I am so sad for her family, and new baby that will never know her mom. 🙁
    John, your right, we need to keep talking about this illness
    at least people are being healed faster than they were. Every day is so precious, isn’t it.

    Stacy,
    They found a nodule on the head of your pancreas, wow! Who read the results from your blood tests?
    Yes, I experienced all the early symptoms of foggy head, blurred vision and anxiousness, as well as severe depression
    after having too many lows. After awhile the symptoms changed and it was harder to know that my sugar was so low.
    As someone else commented, at one time I, too, was accussed of shooting insulin! Well, the 26th isn’t too far away.. Be ready to have All your questions answered when you go to USC. Don’t leave until you are satisfied!

    Peggy

  79. I just heard from Mike as he was released from the post-op department after a 7 am appt with an endoscopic ultrasound procedure. After some confusion yesterday when he insisted that he would need a glucose drip if he was fasting, they went ahead and sedated him (with the glucose on board) and proceeded to find two ‘lesions’ after about 1/2 hour of searching. Apparently, the 2 lesions are one larger and one smaller, but no indication of how deep or where. He will be speaking with his surgeon tomorrow to discuss the next steps.

    Although he was exhausted by the experience, he is thrilled by the news and hopeful for the possibility of laprascopic surgery again.

    John, it is wonderful to hear that despite a setback, you feel so optimistic about your future and you feel ready to restart your life. I can’t wait to have my real husband back!

    Heidi

  80. Hi everyone. I am still in the hospital and not able to sleep. They are letting me use a computer to help me get sleepy I hope. I can’t read all the comments tonight but am just so sad about Angelique. I do feel as all of you do that a family member is gone.
    John, great you are about to be signed off. Even with my couple of hiccups I feel better now than I have for the last year.
    I am waiting to hear if they are going to replace my stent today. My pancreas is leaking and they placed a stent last Friday. It helped but I developed mild pancreatitis. I hope I can talk them out of it and that they will just let me go home. I feel great and think this will resolve itself in time without more intervention.
    Thanks everyone for your thoughts and prayers. You have all been the rock I have held onto.
    More later

  81. The sad, awful news of Angelique and the comments from insulinoma sufferers who still fight to get their diagnosis and/or treatment, both make us think deeply and search for ways to make the condition more ‘public’, more talked about, more accepted and understood. This forum is fabulous and so expressive – we must all keep commenting and updating and supporting one another.
    My own experience has been so easy compared with many others. Today I shall see my surgeon for a post-op check-up and, I hope, sign-off. He will remove the drain that was left in after removal of the unfortunate abscess – that setback was just my bad luck – very nasty but not foreseeable – and I have such respect for him and his team. They don’t get to deal with insulinomas on a daily basis after all, and each time they do one, they learn and improve their techniques. I have definitely benefited from those who went before me! The next ones will benefit from my experiences. That makes me both humble and proud.
    I feel as if I have lost a whole month of my life and, before that, was on hold for the best part of a whole year, anxiously searching for those answers and solutions. But now my life is nearly back to normal and definitely will be by March. I can give concerts and restart my teaching – and the whole thing will be like a sabbatical!
    The cure is drastic – but the condition is unrelentingly depressing and scary.

    Good luck to all who are having a bad time. Good luck to all those recovering. We must talk about this – lots and loudly!
    John

  82. Gibraltar
    i am deeply saddened and shocked as well about Angelique. i feel horrible for her family and two young children especially. She just had a baby in November????? she was so positive and clearly very happy. my deepest condolences to you and your family, you all are in my prayers.
    Pamela

  83. Hi everyone,

    I just spoke with Michael who has been seeing his surgeon, Dr. Charles Scudamore, at Vancouver General Hospital this morning. Dr. Scudamore asked Mike to stay in Vancouver until Friday as he is arranging to have an endoscopic ultrasound done on Thursday. If he doesn’t find anything on the endoscopic exam, he is going to arrange for an arteriographic ultrasound in the next couple of weeks. He is fairly sure that it is on the head, but hopes that it is on the surface and not embedded too deeply. He has advised Mike that he is going to try his best to find the location of the tumour beforehand, which would allow him to have the laprascopic vs. open surgery, barring complications.

    Apparently, Dr. S, thinks the tumour is around 10 mm in size, based on Mike’s symptoms, and that is good in terms of being able to manage the illness daily (not as severe as those with larger tumours) but makes the tumour much harder to find. Dr. S. is a specialist in pancreatic and liver cancer surgeries, and told Mike that because the tumour is so small, it won’t be cancerous (Yahoo!) He also said if he can do the laprascopic surgery, Mike could be back at work in as little as 2 weeks. (this I have to see!) So more back and forth to Vancouver and the costs of flying are mounting. We have to cover this expense ourselves. Oh, well, I would pay anything to get him healthy and back to normal.

    I am so hopeful that this will be over this spring and we can get back to our real lives.

    Bye for now….

  84. Crystal, welcome! I would definately recommend contacting another doctor to have him look at your scans. I sent mine to Dr. Cameron at Johns Hopkins in Baltimore, MD. You really need to deal with a surgeon that knows about and is comfortable with insulinomas. I did a ton of research before I was diagnosed and if you do not eat and your blood sugar continues to fall, the only possible reasons are insulinoma or diabetes. (Diabetes means your pancreas does not work so when you eat, you get very high sugar as you have no insulin, and when you don’t eat, you get low blood sugar if you are doing any sort of activity at all.)

    If there is any sort of mass on your pancreas, I don’t know why they would doubt insulinoma except that they are very rare. I believe there are doctors at Mayo Clinic in MN that do consultations as well, but in the event that you had to travel to see the person, MD would me much easier from France than MN. (your English is very impressive, I can’t imagine trying to express these concepts in a foreign language!)

    As for night sweats, I never had them, but it is a very common side effect of low blood sugar. I used to wake up between 4-5am to have a snack so I would not have super low blood sugar in the morning. The best thing you can do to control your sugar is to eat small meals about every 2 hours. My diatician recommended my meals be about 24 carbs which is very little, way too small to be considered a meal in my book. If you can do that and check your sugar all the time, that is the best you can hope for I think until you get a diagnosis.

    Good luck!

  85. I was so upset to hear about Angeique. Even though we never met as many of us have not it is truly like losing a friend. We have all shared so much of the same experiences and we have a connection. My heart goes out to her family and children. Please pass along my thoughts and prayers. She will truly be missed she offered so much and touched all of our lives.
    Tatia

  86. Gibralter

    I am so shocked that Angelique Acolina has passed away! From your link is didnt seem to be anything medical rather an accident! Please send all our condolences to her family!

    Life is just too short and unexpected!

    I dont really know what to say now so more later…..

    Best wishes to jackie of course hope all goes well.

    John glad to have you back fighting fit!!

    Welcome Crystal!

    Angie

  87. Hello everyone!

    First of all Gibralter. I am very saddened to hear about Angelina nd also quite shocked, it feels like losing one of our family, having all shared so much. I am so sorry and please send our prayers and thoughts to her family and friends. It is so sad.

    Crystal! Welcome and hello.

    You are certainly in the right place here with your symptons which everyone of us on here understands. It is very frustrating when the symptons point to insulnoma but the tumour is difficult to find. I have had one insulinoma removed and now have reoccurence which I have not yet had removed. I have been taking diazoxide now for 10 years. I take 600 mg per day, 150 mg , four times a day. It is a lot but any less and I am still passing out or having severe hypos. I also take bendroflumeathizide to get rid of the wter retention caused by the diazoxide.
    I do cope, its matter of having too, in fact I do have several days at a time of being sympton free and thn for no appaent reason the symptons are still there even with medication, but the diazoxide has really give me a life. Please let us know how you are and any changes you have. I live in the UK.

    To everyone else recovering or just sharing their thoughts on experiences, my thoughts and prayers are with you all.

    Janet xx

  88. Jackie, Damon
    Thank you Damon for the update!
    sorry to hear of the setback! Jackie, it does sound like you are in good hands, and your doctors are on top of everything! And as John says when all is said and done the surgery is a small price to pay for getting your life back! Hope you continue to heal and make a quick progress!
    Sue, Zach
    So glad to hear you are doing well! Cant wait to hear how you come along, and here of your progress as well! Best wishes to you all!
    John,
    Your story here i know is a huge inspiration to all those who are having symptoms, trying to get a diagnosis, or awaiting surgery…. it is so great to hear of another insulinoma successfully cured! God bless to everyone here!
    Pamela

  89. Greetings to all and good luck to everyone! This site is truly heartwarming. John here – on the mend properly now, I believe, one month exactly since the surgery. The setback caused by the deep abscess, nasty, painful, energy-sapping and nauseating, added up to about five days only – and despite still having a drain in and a few minor problems with flushing the wretched thing with saline and snapping the connector, I feel so well. A check-up CT scan tomorrow should show that the abscess is gone and then they can remove the drain. I don’t know about you folks but I do not like drains. They make stuff you don’t want to see much too visible! They itch where they enter! The need to aspirate and flush the thing is not pleasant – but then again, I am feeling great so it’s a small price!

    I have been so well treated at King’s College Hospital. Aftercare was great – reassurance and advice was available on the phone – I have not one complaint. Reading some of the postings here makes me appreciate how lucky I have been. Everyone who has concerns, please go ahead and make this happen. It’s not a walk in the park – but the resultant well-being, brain-clarity, confidence, sanity and strength are definitely worth it. You soon forget the pain anyway.

    I wish all o us well – and thank all of you for your wonderful mutual support.
    John

  90. To Sue, Jackie and Sons!

    Thanks so mcu for keeping in touch. Glad that Jackies is through her surgery but sorry to hear of the setbacks. It souds like the medical people are on top of the situation though and hopefully all will be back on track soon. God is good and is looking after us all. I will continue to pray for everyone on here. Love to all.

    Janet

  91. Hey everyone, thank you so much for your kindness, prayers, and good wishes. This is Damon again. We had a slight set back in that mom’s pancreas was excreting pancreatic fluid around the area where the tumor was removed. The doctors assumed this may be a complication and they were prepared. On Friday, 1/30/09 the doctors placed a small stint in the pancreas to somewhat seal the opening created by the tumor removal in order to drain the fluid into the small intestine instead in and around the pancreas. Mom’s spirits are well but she’s restless, and ready to come home. Earlier this week (Monday) the doctors put her on clear liquids and then solid foods on Tuesday. Her drainage bag was showing too much pancreatic fluid levels so they put her back on IV nutrition to see if the fluids would decrease. The fluids did not decrease quickly enough and the doctors were concerned about pancreatitis. So they stinted her and have her on IV nutrition. Tomorrow starts clear liquid diet. Her fluid excretion is under control, her glucose levels are excellent, her body is sore, and she plans on coming home Tuesday or Wednesday this week. I will print out everyone’s wonderful comments and take them for her to read tomorrow. She will definitely love to read everyone’s postings. Have a great week and probably the next posting you’ll see is from mom herself. You all are great. We have thanked God for his blessings and for connecting mom with you all.

    Sincerely,

    Damon

  92. Hello,
    This is her son Zach
    My mom is doing good she got up and was walking yesturday and today a good amount of distance and she has been on a liquid diet. She has minimal pain now and is feeling ok.

  93. Hi again,

    In fact during my first fasting test I was down to 36mg/dL (2mmol/l) at 40th hour of fast and I was unable to speak, to articulate correctly, as it is usually during my spontaneous hypoglycaemic spells.

    And during the second one, at 6th hour I was at 45mg/dL (2.5mmol/l) and had huge difficulties to walk, another of my symptoms during my spells.

    Overnight, I usually have profuse cold sweats, but I have never been able to test myself at this time, and usually awake with strong headache.

    How was it for you during your fasting tests: glycaemia/symptoms? And do you have night sweats too?

    Thanks

    Crystal

  94. Hi everybody,

    I am reading your posts since a while, and today I decided to write mine.

    I am a French 30 year’s old woman. I had my first hypoglycaemic spell beginning 2006.

    After having two 72h fasts, I was diagnosed as Insulinoma in summer 2008.

    I am now under Diazoxide 150mg/day, it improved a lot the things but don’t do all. I still have some low readings in the 50’s.

    I had a sonography, CT, MRI, which didn’t show anything, and an endoscopy which show something heterogeneous in the head of my pancreas. Not enough to be sure that’s the Insulinoma. So no operation planed yet. It’s hard to wait. Next attempts to localize the tumour will be in spring time with the same techniques and the ocrteoscan.

    How many of you have been under Diazoxide treatment before their operation? To which dosage? And did you have some hypoglycaemia under Diazoxide and 5 to 6 meals/snack per day?

    Do you know anyone to who I could send my last CT scan, as there is something appearing that one Doctor told me that could be the Insulinoma and the other one didn’t know?

    I hope I am still readable even I did some mistakes in writing.

    Thanks

    Crystal

  96. Sue,
    you are in my prayers and all the well wishes are sent your way! Please get back to us soon on your progress, otherwise maybe someone can post for you! I hope all goes smoothly for you, with a quick recovery! God Bless You!!
    Pamela

  97. Sue,

    Thank you so much – I wish you every success with your operation – here’s to your future health and hypo-free life!

    John was loads better today and he even made me bring in his scissors so he could cut his beard! He proudly told me that he had good old roast beef for Sunday lunch too and he was hungry again by 5pm – hungry! Imagine that! He won’t enjoy putting on any of the weight he’s lost over the last 3 weeks but to see him actually go ‘Yum!’ when his food is brought is fantastic.
    It looks like he’ll be out on Wed now and I’m very very happy for him to be in there until everything’s properly ok.

    Fiona xx

  98. Damon,
    So pleased your Mom is through suregery. Give her all our love and blessings. Brill news.

    Fiona, Sorry to hear about Johns setback, hope all clears up soon and that he will be back home again.

    Angelique

    I had my spleen removed as well as half a pancreas many many years ago and hav coped very well without it. Have to have the jab every five years and it was suggested I take penicillin (low dose) all the time, but I do not do this. The spleen removal has not made much difference to me.

    Janet xx

  99. Damon and Jackie I am so happy that everything went well . i hope that you have an easy recovery.

    Fiona I am sorry to hear about John, but it sounds like he is in good hands.

    Thank you to those who have given me their good wishes. I will be having surgery in three more days. I am very nervous, but at the same time looking forward to having a normal life again, not having to eat all the time, not having to take blood sugar readings all day, and not being afraid of having hypoglycemic episodes.

  100. Hello all,

    Fiona here again. I’ve been waiting until Jackie had her surgery before giving an update in John because she was so worried and scared about it – but I’m thrilled she’s through it! Do keep updating your mum’s progress Damon!

    Unfortunately (or fortunately for them I guess!) there are always more people in here waiting for surgery so I won’t get too bogged down with details but I thought I should let you know that John developed an abscess deep inside near the wound site about 2 and a half weeks after his op on the 4th Jan and he’s been back in hospital since last Thursday. It has been cleared and he’s on strong antibiotics now and should be out again on Tuesday. A bit of a set back and he got very depressed as it was developing but he’s feeling better already.

    So I suppose I’m trying to say that if there’s any kind of downturn when things have been going well, then get straight onto it! – don’t delay like we did. It’s hard when you see someone every day – you don’t notice changes as easily. But my mum did – she hadn’t seen John since he was in hospital the first time and she knew immediately things weren’t right and the hospital treated it very seriously and very quickly so all should be ok now.

    And he is on the mend properly now! His sugars are still stable too so he’ll start to feel the benefit of that as soon as he regains his confidence that it was all worth it!

    Very best wishes to everyone here and especially to anyone about to have their surgery. Please don’t get discouraged by this post, it was just very bad luck for John!

    Fiona x

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