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. Hi Anne,
    It’s unfortunate that I did not have the ability to check my blood sugar when I was experiencing symptoms of being low. In addition to all the food I ate during the incident, I also had several glucose tabs. I have never tested in high ranges like that before. The only other time I recall testing very high was in the hospital after eating following a fast. At that time I tested 10. What I did find surprising last week, however, was the extent to which it dropped in only 5 minute increments. I was also surprised that I did not feel more immediate relief with sugar ingestion. Usually, if I start feeling “off” I can get back on track by eating a fruit bar or something but doing so was not effective in relieving symptoms this time.

    Unlike your partner, I have problematic vision and palpitations related to lows. I can appreciate your frustration with the snail’s pace at which things proceed when waiting for tests and diagnosis. I wish you and your partner well.

  2. Audra,
    Found your comments about blood sugar levels interesting.
    My partner still seems a long way away from any kind of diagnosis. The NHS in the area of England where we live seems to grind exceedingly slow.
    This week however he has been complaining of blurred vision again which appeared to be linked to high blood sugar levels. he seems to be having constant palpitations again and no medication seems to be controlling his bp effectively. When he asked his gp what to do about the high blood sugar and blurred vision she said she did not know. If he were diagnosed with diabetes she would give him insulin but since his blood sugar levels jump around all over the place she does not have clue what to do. Mean time because of the very slow progress we are making within the NHS necessary tests do not seem to be forthcoming no matter how many MP’s, CEO’s or consultants we complain to.
    It is very frustrating. Good luck with your progress towards diagnosis

  3. Only 10 more sleeps until my next test! I’ve confirmed that the test I will be having is, in fact, an angiographic CT. I will have an IV inserted, dye will be infused and they will proceed to do a CT. I found an article on the internet that described succeess in locating insulinomas with this particular method so here’s hoping!

    I had another “episode” last week–the first one of it’s severity in 9 months or so. My vision went “weird”-there were spots within my visual field that I was unable to see. Then I became vague. Unfortunately, my colleague and I were in the process of doing some teaching. I was unable to recall her name and despite eating a fruit bar, orange, and having some apple juice, I experienced palpitations and a feeling of impending doom. I ate a meal and returned home to check my blood sugar. At first check it was 9.6. Fifteen minutes later it was 7.8. Another five minutes and it was 6.7. Five minutes after that it was 5.7. Another five minutes and it was 5.3. Then it bounced around a bit and I settled back to 3.8. Have others had similar events?

    Heidi, interestingly, I also have a small backyard greenhouse. I usually start seeds indoors as I have grow lights. Unfortunately, I had a very low germination rate this year. Gardening is also my way to de-stress. I fear that I may not have as much energy this summer to enjoy it as much so I’ll have to look forward to next year with the hope that I will be insulinoma free.

    Laura, I recall receiving an email with Sofia’s post as well but I don’t think it ever showed up on the site. Sofia, if you still read the post, try submitting again!

    I hope everyone is doing well.

  4. I have been diagnosed with insulinoma and have an appointment at the Mayo Clinic on June 15th. I have read some posts of others who were referred there but never heard how their appointments went or if they had surgery. They have scheduled me for tests on a Monday and a follow up appointment two days later. The problem is I have had those tests already CATscan and ultrasound and don’t understand why they want to repeat them. I also had an endoscopic ultrasound in which nothing was found.

    I am trying to get my mind around whether this trip, is worth it and if they do find this thing if I really want to have surgery. My blood sugar goes down regularly if I don’t eat every two hours but other thatn weight gain I haven’t had any bad symptions. I always get to it before I black out, get confused, etc.

    I would love to hear any experiences of anyone at Mayo Clinic. Also has anyone tried alternative therapies of any type and been successful.

  5. Heidi, I get emails whenever someone does a post. I got an email with Sofia’s post, but I do not see it on here. I believe she is from Sweden, she is a nurse and has has not yet been diagnosed. (Sorry if I got that wrong Sofia, my memory has never been great!)

  6. H Audra,

    That sounds like they might mean the ERCP procedure (Endoscopic Retrograde Cholangiopancreatography). It is a scope down through the stomach into the small intestine and into the pancreatic duct to take pictures from the inside. Jackie had that to place the stents she needed in her duct due to her leaking complications. Mike didn’t end up having that, but he did have an EUS (Endoscopic Ultrasound) and they sucessfully found his tumour in that test. Or, there is also an calcium stimulation arteriographic exam, which is like a heart catheter (via femoral artery), except they go into the small intestine instead of the heart. Mike had that too; it was not conclusive, but did show the tumour to be somewhere on the head of the pancreas. Maybe your hospital does the CT via angiogram (up through the femoral artery again).

    The incidence of Whipple procedures is higher if the tumour is located on the head, but by no means a foregone conclusion. Mike’s surgeon said he would do everything possible to avoid a whipple, and he did that. The abscess – well that was another story – but at least it won’t be permanent.

    Mike’s drain bag is really attractive – especially its contents. Reddish-brown or yellow-grey sludge, depending on the day. He is having a lunch date with the staff at his school tomorrow and will probably be mobbed by the 425 students who really miss their regular computer teacher. Something tells me he will be very busy at the school for a couple of hours, just saying hello to his kids.

    I have a small greenhouse in the back yard, and it is completely full of baskets and pots of annuals, since our nighttime temps can still end up down around freezing through til the middle of June. We are Zone 3 here, and gardening can be a challenge. I do up my hanging baskets etc in May to have them really ready to put out once I am sure we are going to be ok. Once the baskets and pots are out, I just have some cukes, tomatoes, melons and peppers in the greenhouse over the summer. Prince George is not like living in Vancouver – the warm winters of Lotusland (as t is often called), do not extend this far north. We are north of Edmonton, and have similar weather patterns as they do, just on the west side of the Rockies. Gardening is my sanity zone, and I have to cram it all in the few short months of summer here. Probably just the same for you is SK. Those Californians have no idea how hard it is to garden in real weather conditions!

    Anyway, relax and take care of yourself while you wait for your next test – it will be one step closer to the solution.

    Laura – I don’t see a posting from Sofia, am I missing someone new?

    Heidi

  7. Heidi, I’m sorry to hear that Mike continues to sport an unwanted accessory. Hopefully, the abscess will continue to diminish without further surgery. It certainly sounds like there is lots of life at your house. I totally agree that green is a welcome color and I’ve also been on a greenhouse adventure though didn’t have the energy to actually do any planting on the weekend. Spring is here–take it all in and enjoy the furry creatures in your house.

    I received another phone call from my endocrinologist’s office. I have been booked for an angiographic CT on June 15th. Has anyone had their insulinoma located by this means? I am happy to be able to acccess further testing here at home and am just hoping that it will prove effective. At least I have something to look forward to.

    Take Care All!

  8. Well, we were being overly optimistic, it seems. The drain didn’t get removed yesterday and will be in until at least June 12th (next Dr. appt.) or longer. The CT scan done last Friday showed the abscess is now about 1/4 of the original size compared to when he was first admitted to the Prince George hospital. Dr. Appleby has decided to leave the drain in as the CT also showed it was in the right spot and is still working well. Apparently, the alternative could still be surgery if the drain stops working and the abscess is still there. However, Dr. A is very happy with Mike’s progress so far and likes what he sees. Mike, of course, was ready to shed his little ‘pet’ (drain bag) and go back to wearing normal clothing – but well, that isn’t going to happen for a while yet. Dr. A. also told him to start moving and get regular exercise now. I will be bumping up his walking distance each week until he can keep up with me and the dog (she and I did 5 km today).

    So, we are lazing around the house, puttering in the garden and finally enjoying our very late spring. I have tulips and daffodils blooming and hanging baskets waiting in the greenhouse for better night-time temps. This weekend we finally got the first full green flush of leaves on trees; what a relief from the dreaded grey of winter.

    A week ago, I felt a compelling need to stop in at the local animal shelter and came home with a 7 week old, all grey kitten we have named Charlie. We lost our oldest cat, Clara-belle, age 17, at the end of February and have missed having our full complement of 2 cats and one dog. Colin’s cat, Luc, is absolutely outraged with the new arrival, while our dog, Molly, is mothering the little one. Needless to say, the house is a little livelier with a little kitten zooming around after everyone and everything. He is a cheeky little fellow!

    So, we are well and starting to feel like normal is returning to our daily lives for the most part.

    Heidi

  9. Sofia, Welcome. I wish I could tell you that there is a pattern for this disease, but there isn’t one. Some of us have multiple incidents within one day, others can have one per week. I think sometimes you just get lucky and sometimes you don’t. I myself had hypoglycemic unawareness (that is hard to spell!), what that meant was I never noticed myself getting low until someone else noticed and it was too late for me to help myself. In fact, when I finally did call my doctor, her nurse mis-understood me and thought I was having issues with high blood sugar so they told me to fast before my morning appointment. (not a good idea for someone in our condition as you can imagine). So I fasted, drove to the appointment by myself, had a normal appointment, left, went to starbucks and drove myself to work. The next day my doctor called to tell me my sugar was 27! She said most people would be in a coma with that reading and I was walking around and driving!

    If you want to self diagnose, I would buy a blood tester and check your sugar levels throughout the day. In addition, write notes about what you are eating and your activity levels. that way, if you see low sugars, you can bring the log to a doctor and go from there.

    Good luck!

    Laura

  10. Thank you, thank you so much everyone! Hearing about it from those who have already gone through this is very encouraging…and knowing that i might not actually need a whipple is a bit of a relief, although i’m going to be prepared for it.. But yes, it is so worth it, knowing that this ordeal will finally be over soon now..
    Glad to hear that you all are doing well..i’m scheduled for surgery on the 10th of june..
    Once again, thank you so much..for all your support! I am so glad i stumbled upon here ^_^

    Audra, thank you for your wishes..and i’m from India..and we’re almost non-existent here.. Having never really had a family growing up, i hope to become a part of this big family..

    Rhonda, thank you! And really really glad to know you’re feeling great., stronger than before..it really does ease my mind quite a lot.

    Will post soon with more queries

    -Sahana

  11. Sahana,
    I am 31 and had a Whipple just two-and-a-half months ago. It was my first surgery and a major one at that. Like you, I was definitely nervous and did not want to know much about the details of the surgery or recovery beforehand.
    In terms of my recovery, the hardest part was not being able to eat and having a tube down my throat. Once that was out, I felt much more like myself. I didn’t have any complications but was tired and sore for a while. I do think that being young and in otherwise good health helps a lot.
    As others have said, there are so many benefits to the surgery. I feel like I am stronger both mentally and physically. I have more energy than I have had in years.
    Let me know if you have any specific questions that I can answer.
    -Rhonda

  12. Hi Everyone,

    After engaging in a full out pity party this weekend, I am happy to report some progress. I received a call from the endocrinologist`s office indicating that a request has been made for further testing. The receptionist referred to angiogram and CT so I’m going to assume it is an angiographic CT that has been requested. Fair enough!

    Hi Sahana, my thoughts are with you as you anticipate your surgery. Although it is scary for you, I’m happy that you can look forward to an end to this madness! I can’t help myself from asking where you are from–don’t feel obligated to reply. I am a Canadian and there seems to be very few of us that participate in these posts. Like Jackie said, `we are like family`and I know I get tremendous support from everyone here (thanks!). I`ve also found great power in gaining insight from the experiences of others.

  13. Sahana, I was also one that a Whipple was likely but did not have one in the end. My tumor was located between the head and neck of the pancreas. It is a scary prospect to face this surgery. I am 59 and just had it in January this year. You can do this and the surgeons deal with this all the time. Ask lots of questions and and read as much as you can about it. I searched online and read as much as I could so I would have some idea of what to expect. When are you scheduled for surgery? Please keep us all posted. It is like we are all family and keep in touch often to support and encourage. Best of luck to you and it will all be worth it to have you life back.

  14. Sahana,
    So glad you found this site! I just had my insulinoma removed this past December. It was quite a rough ride. I know you are scared but you are half way there, locating the insulinoma if half the battle. Where is your located? If it is in the head you are far more likely to have a whipple but not always. The most important thing is to find the best surgeon you can with the most experience. If your surgeon is quick to say you have to have a whipple you might want to get another opinion. It may be possible like John said to avoid it. How was your insulinoma located? There are many on here that have had the whipple and they can give you first hand experience as what to expect and what helped get them through. You are young and will recover well I am sure. Do your research on hospitals and doctors and surgeons. There is lots of info on this site that will help you. I too can give you info I found in my research if you like. I am feeling great now and you would never know what I have gone through the past year and half. It is like having a new life! Good luck to you and I look forward to hearing about your journey.
    Tatia

  15. Dear Sahana

    I was originally told I would probably have a whipple and I was really terrified. I just cried! It seems such a big deal to us mere mortals (and Im not dismissing any of your fears) but the surgeons do this sort of thing all the time. One of them who I spoke to about it described it as “a little extra plumbing to be done”!

    Quite a few people on here have had the whipple and recovered quickly and well, I did not have one in the end although I did have a few minor complications recovering – nothing major tho.

    Read through your book and write any questions and worries down – however minor they may seem – and talk them all through with your surgeon.

    Make them talk to you and explain, its easy for them as they deal with stuff like this every day but it is happening to you and not them!

    Being younger than most of us here (no offense to anyone!) you really cant live with this as you are, my doctor said I was very young at 40 (love him!) to be on medication for the rest of my life, which is not that effective all the time!

    We will all try and help with anything you need to ask. I am fitter and more healthy now than I have ever been and certainly would not go back to the way I was two years ago.

    All
    I can only echo what Peggy said earlier – I may not post all the time but am here taking it all in!

    Rhonda
    Shame you are getting little response about your get together – Ill be there in spirit!

    All the best to all!!

    Angie

  16. Sahana – welcome to this site where we have all shared so much and continue to support and help one another, new and old.

    Of course you are scared. We all were. This tumour is so rare, so difficult to locate – but so treatable once located and proved. You are already there! I was terrified at the prospect of the full whipple and was warned that that might be the only solution. They really can’t say until they’ve gone in.
    I was hours and hours in surgery, my wife and kids sure that I had been whippled – but I wasn’t. I had a sort of halfway house thing. Deep surgery and removal of a bit of pancreas – but nothing else. I felt grim for only a few days. Recovery went well after an initial setback with an abscess.

    Some people on here have had far more stuff to put up with – others have gone through it easily. But all would agree, I am sure, that the cure is worth the pain. Getting your life and sanity back… must be worth a bit of anxiety.
    Read on and take strength from others who have been there. You are so young, too – that must be to your advantage whereas I am an old guy of 60!

    Good luck – and keep us posted!

    John

  17. Hello everyone..
    I’m a 22 y.o girl recently diagnosed with insulinoma through the usual indicators.. my surgeon says that i would most probably require a whipple procedure and pancreatic resection. All this sounds REALLY terrifying to me! I read through most the comments here, yet to go through all, but i am just scared witless! And though my doctor gave this booklet about the whipple procedure, reading about the post-operative stuff made it even more scary for me..and i’m trying not to show it cuz my boyfriend is even more nervous about it all.. I felt that hearing from someone who has actually gone through it all is much better than reading about it from a booklet or from the doctors.. Much obliged if someone could allay my fears! :S

    Sahana

  18. Audra,

    As Mike progressed in the illness, he found exercise of any sort would devastate his blood sugar even faster, and eventually couldn’t walk around the block without feeling weak. Ultimately, you will probably find that things are going to get harder to do, and you will want to conserve energy for those important events in your day – you cannot do it all! From diagnosis in Emerg to his surgery was April 17, 2008 to March 19, 2009 for Mike. However, we also know now that Mike’s ongoing fatigue and irritability for the previous 4-5 years were due to the tumour developing and his blood sugar getting more out of whack as time passed.

    We knew early on what it was, but it took that long to get the testing done, as they failed to find anything in the various methods. Because we had to travel 800 km to get to the major centre to get the complex testing done – Vancouver – it also took time to get things arranged each time. So, your frustration with the hurry-up and wait is natural, but it does take time to get to the point of having the surgery.

    Also, checking your blood more frequently may help, because you will be more assured you are in a good situation before you try to expend energy. Mike’s local doctor advised him to make sure he had tested his blood shortly before getting into the car to drive, as he would be automatically considered at fault if he had an accident and could not prove his sugars were good by having a detailed record. Anyway, you need to fixate on your blood sugar, it is how you need to be to keep yourself healthy and safe.

    Eight weeks from his surgery, Mike is not normal, but there is more life in him over all. He has started to drive short distances this week, and this gives him a sense of freedom again. He is still not able to do very much, but he is improving, and that is all we can ask for at this stage. He has gone grocery shopping with me, vaccuumed part of the house, and done some chores, but he is really still just recovering so it will take a while. He is enjoying watching DVD’s of tv shows and movies, and is back to reading his beloved comic books.

    So, life is getting back to normal, but not quickly.

    Have patience and give them time to help you – as frustrated as I was during the process, I did eventually discover that they were not ignoring us, it just takes time to get these complicated things done. And they are very concerned that they have all the right info before they start cutting you open – it is not an easy surgery and the prep work is important to make sure it goes as well as it can.

    Bye for Now,

    Heidi

  19. We have created an evite for the first insulinoma get-together! Let’s share our experiences and celebrate our successes. We will meet for lunch at C & O Trattoria (www.cotrattoria.com) in Venice Beach (L.A.). Please bring your family. We have reservations for the outdoor patio. Hope to see you there on July 18th at 12 PM!

    You can also click on the evite link below for details:

    http://www.evite.com/app/publicUrl/ZCEETDWMYWOFHXLINJNT/insulinoma

    Rhonda

  20. Audra,
    Believe me when I say that I know how anxious you are! It’s good to push yourself to live as normally as possible in the mean time… but please be careful!! Nothing can drop you’re sugar quicker than exercising! If you are then be sure to monitor your sugars more rather than less. Right before and right after!

    I want you all to know, though some of us do not post often we do keep up, you are all on our minds and in my prayers.

    Peggy

  21. Hi Again,

    Thanks so much for your thoughts and support–it truly makes this all a little more bearable. Unfortunately, the meeting did not take place today. I was told that the surgeon was called away to an emergency. So, I was informed that they would try again next week. AAAaaargh! I feel so stuck–I am so intent on hearing some news of progress toward surgery that I struggle to get through a day. I think I’m going to have to push myself to continue to do the things I used to do like exercising. Although my energy levels are not great I’m hoping some activity might kick start me into something other than fixating on progress that is not happening. I may limit the number of times I check my blood–it probably doesn’t help that I fixate on that, too! Anyhow, enough about me.

    Jackie, it’s awesome that you are at the tail end of your insulinoma journey. How the heck do you expel stents? I guess I may be picturing the stents to be something like straw-sized. Woohoo, you have normal duct!

    Heidi, I hope Mike is able to have his drain removed on Monday and be able to celebrate being tube free. Wow, that is a tremendous weight loss. Hopefully, he is feeling strong. I can appreciate that he has been through a great deal and will need to heal for a while. I’m wondering, though, what his spirits are like. Has he re-engaged with life?

    John, I agree with Jackie. You have tremendous spirit and it’s great to have you in our cheering section.

    I’m hoping that Marcus’ wife is also doing well as she recovers from her surgery.

    Take Care All!

  22. Hi everyone,

    Audra, the travel will be worth it to get to a major centre where they have experience with these devilish tumours – just wait, it will happen.

    Jackie, the end is coming soon now. You will feel better and life gets easier based on the postings of those who have gone before on this blog.

    As to Mike, he is feeling quite well, although dreading yet another CT scan tomorrow – but it is in aid of determining whether the doctor takes out his drain on Monday. The drain continues to be uncomfortable and he is very hopeful it will be gone soon. He is eating everything, but small servings and his appetite is growing daily too. He has dropped to 189 lbs now (from 230 ) and his cheekbones have reappeared. Its just lovely to see them again too.

    Well, more news next week,

    Heidi

  23. Audra, I wish you well on your visit tomorrow. It has to be so frustrating not to be diagosed and moving toward a cure. I did read on line that some people have to have an exploratory surgery in order to find the tumor. Some are just really hard to find.

    John, you always are so uplifting. It is a celebration once you are free of this dread condition. I had my final stent placed on Monday and did not have any post procedure pain this time. What a difference from the last one. They had to dilate the stricture a bit more and the pictures show a normal duct now. I see the physican in a month to see if this last stent migrates normally out of the duct. It should be expelled in about 2 weeks. I can’t believe I am at the end of this and can just think about getting thinner and stronger. Hurrah!!!!

  24. Hi Everyone!

    I’m going to try to respond to John’s recent post. I tried, on two occasions, to respond to Heidi but my posts vanished.

    Thanks John. So far, there have been no further scans. My endocrinologist is supposed to be meeting with the surgeon and radiologist to discuss options for locating the tumor tomorrow. I suspect that I may have to travel out of province. As Heidi suggested, I hope that Alberta will be an option. Should that be the case, I anticipate 5 hours of travel to arrive at a much larger centre that would have more diagnostic ability (I think). I’m glad that you are well-it’s encouraging to hear success stories.

    Heidi, I hope that Mike is progressing toward a full recovery. Thanks for your info.

    I’ll provide an update once I know more. Until then, I wish everyone well!

  25. John here – London UK

    Audra – has the latest scan gone well and has the tumour been located? That is so important and so thrilling, if and when it does! Then you and they know the enemy and can plan the attack. When my scans came back negative, I felt really strange, disappointed! – but within hours I got a call to say they had missed it! It was there, mistily, barely visible.

    More scans, more delays – but then it was operated on – and I am fine. The cure is absolute.

    I hope Mike’s good progress continues, Heidi – enough for anyone to have suffered, surely!

    To all, pre and post operative insulinomiacs – raise a toast and cheer yourselves and ourselves. We are a bit special… and we are very very lucky people – eventually!

    John

  26. Hi Audra,

    Mike’s tumour was not found by MRI or CT, or the calcium stimulation arteriogram either. It finally showed up during the endoscopic ultrasound done in Vancouver. Based on that they told us they saw two tumours, but during surgery one turned out to be a cyst and was not removed. His tumour was 1.9 cm on the back of the head of the pancreas and proved hard to find and hard to rescection during surgery.

    Mike’s surgeon in Vancouver was Dr. Charles Scudamore, of Vancouver General and BC Cancer Clinic. He is a Hepatobiliary tumour specialist and does only pancreatic, gall bladder and liver surgery, including transplants. He seems to have a very good reputation amongst medical staff and patients. He also had a good team of resident specialists who work with him and we never felt alone. Mike did have post-surgical complications (which have not been very much fun), but that can happen to anyone. You definitely need a pancreatic specialist to do your surgery – we live in a community of 80,000 and were strongly recommended to go to the big city. SK has less population than Greater Vancouver. I would check out the surgeons in Alberta too, since they are a bit closer to you.

    Good luck – it does take time, but getting a firm location of your tumour is a key feature of planning for the surgery and having the road mapped out is so important. You will find the right team, just do your own research and check out anyone who is recommended to you. Talk to nurses in their hospital – they always know the good doctors. I have found doctors don’t talk about each other, but nurses are not afraid to say if they like someone’s work.

    Heidi

  27. Hi Everyone!

    Unfortunately, it has been a very frustrating day for me. The MRI and ultrasound that I had did not detect the little bugger. The endocrinolgist that I am seeing came from Germany a couple of years ago. She would like me to have a specialized MRI (although I think going to Germany is a bit of a stretch…)with a different type of contrast but we do not do that particular test here. She will be meeting with the surgeon and radiologist on either Thursday or Monday to discuss options. She did comment that the would not enter into surgery until the tumour has been located. I may have to go out of province.

    Heidi, if memory serves, Mike’s tumour was found during an MRI. I had an MRI with contrast (although I don’t know specifics). Do you know if Mike’s MRI was done with a special contrast? I’d be interested to know who did his surgery as well as where. At least BC is still in Canada–I don’t think I”m going to have much luck in SK.

    Marcus, it’s awesome to know that your wife’s surgery went well. It’s great that they were able to do it laparoscopically.

    Jackie, it’s great that you are seeing the light at the end of the tunnel. The 18th is only days away!

    To everyone else-take care, you’re all in my thoughts. I also thought the blog book gift was an excellent and good idea–very thoughtful!

  28. Hello Everyone –
    Heidi – Glad to hear Mike is doing well!

    Jackie – I hope all goes well on the 18th!

    Wanted to let everyone know that my wife’s surgery on the 8th went very well. It was done laparoscopic and she got out on Sunday. She is spending a few days at her mom’s since that is only 45 minutes from the doctor and we live 3 hours away. Just wanted to make sure if anything happened she could get to him quickly. She’s had a little fever but the doctor isn’t worried. The worst part was the shoulder pain from the gas. We are excired about living a life not centered on feeding that tumor every 2 hours. Thanks to everyone for their prayers and good luck to all that still have a long road ahead.

  29. HI everyone,

    Mike is out of hospital one week, and so far so good! He is eating, albeit small quantities but has hunger and appetite. He has also been off the anitbiotics which they are suspecting he was reacting too and has not been vomiting since. His drain is still working with flushing and will remain in at least 2 more weeks. He gets another CT next week and then they will decide if it comes out. His weight is now 193 lbs, down from 235 the day before the surgery. He is starting to take a walk around the block this week and boy is he out of shape!

    So we seem to have turned the corner!

    Thanks again for all your thoughts and prayers – it has been wonderful having a support group out there in the atmosphere.

    Heidi

  30. Peggy,

    That would be great if we could get the skype thing working. My mom is really enjoying reading the blog, and was very surprised when she saw my first entry about her! (Hi, Mom, if you read this on a blog update printout 😉 She can relate to so many of the things she reads here. It has been a year and a half since her surgery, and we can’t believe how fast the time has gone.

    Please keep me informed as to how we may electronically join you at the reunion!

    Susan

  31. Jackie,

    I’m glad you’re feeling better, just in time to enjoy your mothers day I hope. It’ll be nice to have other concerns, although they are more time consuming than I thought they’d be! It would be really great to have you come down for the get together…I hope you can make it.

    Heidi,

    Sounds like good news for Mike, finally! I’m sure it was nice to have his parents there, that’s a big trip for them!
    Please try and join us if Mike is feeling better by then.

    Susan,

    I think I can get access to skype. That would be great, my mom really enjoys that. How did your mom like the blog packet? What great ideas!

    Rhonda, Thanks for taking the initiative and setting a date!
    I think I can make that work, if it works for everyone else. As I said, if we get together in O.C. you are all welcome here, unless it turns into a big event or something.
    I talked to Suzie and she’s cool with that. We’ll discuss it with Pamela first of course.

    John, that is not an understatement, we really do share a huge experience!

    Peggy

  32. Hi, to everyone and wishing all of you a Happy Mother’s Day weekend. After a long week I can say I am feeling almost back to normal after the painful post stent days. Blood tests confirm I did not have pancreatitis. So all is well and I have just one more to go on the 18th. What ever will I do when I have no pancreas details to deal with daily.

  33. Heidi!!! John here in London, following your story for so long now…

    It must be such a relief for you and Mike to be back home. I can imagine that any inconvenience or pain or discomfort will quickly resolve and be as nothing compared with what you’ve been through – but do take it carefully…

    Every little improvement will seem like a mountain climbed, the view improving with each new summit! I remember those first weeks after release, three months ago now!
    And I am truly back to full strength and work, the little blighter beaten and cured.
    One day it will all be in the past for you…

    Love and good wishes to you – and to all of us in this exclusive little club worldwide. We share huge experiences.

    John

  34. Heidi, that is so awesome for you both that Mike gets to come home and his parents are there to celebrate with him. It could not be more wonderful. I can tell you it was hard the first day I got home. I was really scared of being on my own with the issues and all of it. It took a day or two to get steady again and be ok with it. I hated the hospital but it was kind of a security blanket. I finally had to take a deep breath and say “I can do this”. So happy this day has finally come.

    Rhonda, not sure I can make it to the party in July. It is hard to get off after being off so long for the surgery. I was out 2 months. Will keep the date in my calendar and see what I can do. Great idea to plan this.

  35. Hey Everyone!

    I’m happy for those of you that will be getting together in July. That’s awesome.

    Heidi, it’s great that Mike can sleep in his very own bed tonight and also great that he has not only your support but also his parents. Woohoo!

    Take Care 🙂

  37. Dr. Appleby came into Mike’s room at about 12:30 and asked him if he wanted to go home? Mike said, “I think so.” “Well, you can go” was the answer! We came home with a large bag of supplies to continue to flush the percutaneous drain and we go in to see Dr. A next week for a follow-up and may be ok from here on.

    Here’s hoping!!!!!!

    PS. Mike’s Mom and Dad arrived this am to see him, and we think they were his good luck charm!

    Whoopee!

    Heidi

  38. Dr. Appleby came into Mike’s room at about 12:30 and asked him if he wanted to go home? Mike said, “I think so.” “Well, you can go” was the answer! We came home with a large bag of supplies to continue to flush the percutaneous drain and we go in to see Dr. A next week for a follow-up and may be ok from here on.

    Here’s hoping!!!!!!

    PS. Mike’s Mom and Dad arrived this am to see him, and we think they were his good luck charm!

    Whoopee!

    Heidi

  39. To the members of the planning committee: Does anyone have Skype capabilities? I will be visiting my mom in Colorado that weekend, which happens to be my 40th High School Reunion celebration. My mom (Marilyn) came out here to California to have her surgery in November of 2007. Perhaps we could Skype you guys and get acquainted. I just printed out 400 pages of this blog, bound it, and included it in a Mother’s Day package that I mailed to her this morning. So she should be familiar with you by July 😉

    Susan from San Jose, CA

  40. Everyone,

    WE HAVE A DATE for the insulinoma get-together! It will be Saturday, July 18th in the LA or Orange County area. Please mark your calendars. Partners and kids are welcome.

    Location and Time: TBD. Let the group know if you would like to host it at your house or if you have any suggestions for restaurants.

    Peggy and Pamela, You both expressed an interest in helping to plan so consider the three of us on the planning committee!

    Rhonda

  41. Jackie

    I had a lot of abdomen pain after my op. The pain in the first few weeks was definitely air and it was awful. I then developed a really bad pain that felt like really really bad indigestion going over and over burning. I went for an emergency scan as I was sure I had fluid building up and got myself worried but they couldnt find anything. In the end – as they didnt give me any reason – my doctor gave me some strong indigestion tablets to take for a week then as and when but I took three and have never needed them again. I think i had a build up of acid and then worried myself into a state where i was just overproducing it and creating my own problem.

    Not that I think this is much like your problem but just to say how painful trapped air can be – i thought i was having a heart attack at one point it hurt so much!! Sounds like Im a real hypochondriac but when you go through something like this anything sets you off!!

    I hate unsympathetic doctors!!!

    Good luck!!

    Angie

  42. Good Heavens Jackie,

    you haven’t had an easy ride through your recovery either! The illness is horrible, but the cure is no picnic to get through.

    Mike doesn’t know it yet, but his parents are flying from Vancouver on Tuesday for 3 days. They are 81 and 87, and don’t travel much anymore, but Mom called and said she just needs to see her 1st born in person. All this bad news has been driving her crazy. The funny thing is they have resisted all invitations to come see us up here for the last 10 years, saying it was too far and too complicated for them. This is true at their age, but Mike will find it ironic that the one thing that gets them to visit us up here, is his being sick. I look forward to them seeing him and being reassured that he is doing ok despite the challenges.

    The good news has been that before this illness developed, Mike was a very healthy man and his overall stamina has served him very well on this journey. We are hopeful that his health re-asserts itself and he finally wins this battle and returns to a completely normal life.

    Hey California girls, would love to join you in June/July, since I am on the West coast as well, but I do think I will still be nursing my invalid for some months to come.

    Heidi

  43. Heidi, that is truly great news that surgery has been delayed. Let’s hope the antibiotics will do the job and he can go home soon.

    I have had a couple of tough days. Yesterday morning I started having severe pain in the upper abdomen. The on call doctor said it is expected but it has been tough. Pain meds are helping and I have been on clear liquids. Not sure if it is a mild pancreatitis or gas from being pumped full of air for the procedure. This goes back to not being told all. No one told me to expect this and it really scared me. I called back to the on call doctor today and he was less than sympathetic. Right now I am sorry I got the stent put in. Hopefully tomorrow will be better.

  44. Hi again everyone,

    A bit of good news!

    Mike’s surgeon had another CT scan done late Friday afternoon, and confirmed that their concern about a small intestine obstruction having started to develop earlier this week is not happening. As well, the abscess/fluid build-up has decreased somewhat in size since last Tuesday, and they are holding off with the surgery now until they check with another CT later next week. They really don’t want to rush into surgery if time will take care of the problem.

    Mike has started eating again today, small amounts but it is staying down, so far. (Mike’s original surgeon has gone away for a couple of weeks, and another is now looking after him and wanted to check out some more things before he did the surgery).

    Wow, what a stressful roller-coaster this trip has been!

    Heidi

  45. Thanks to you all for your ongoing support. We really need it just now. Getting absolutely nowhere. Finally managed to see a cardiologist today who was meant to check out the palpitations prior to seeing our endo bloke next Tuesday(still no sign of 72hour test). My partner was discharged!!!!! Nothing more the cardiologist could do for him he was told. Imagine how that makes you feel. No amount of creating a fuss made any difference. This really is so frustrating and dispiriting. How on earth do you make any progress with a difficult to diagnose complaint?

  46. Rhonda

    Try contacting her through her face book as that seems to work. Ill try for you…..

    Heidi

    Have been reading all the problems with Mike – its really awful, it must be awful for both of you and very difficult to keep looking up – all our thoughts are with you both and hopefully he will turn the corner soon and you can put it all behind you!!!

    Janet
    We must do something about that jet you know!!! Its holding us back!!

    Good luck to all.

  47. Greetings Everyone!

    It seems like lots is happening for everyone.

    Marcus, I’m thinking of you and your wife as you prepare for her surgery.

    Jackie, woohoo on your successful ERCP. I do hope that is the last pitstop on your way to overcoming this disease!

    Heidi, you and Mike are also in my thoughts. Although it may offer little comfort admidst all the struggle, I hope it helps to know that you have the support of so many on this site. We’re rooting for you!

    Pam, Rhonda, Peggy, and others who are planning a get-together…have fun, how very awesome for something great to come out of this yucky disease that binds us together! I’d love to say that I can join you but the distance is a barrier for me. I’d also like to think that I may be having surgery this summer and I hope I”m not too far out on that hope.

    I underwent both my ultrasound and MRI on Wednesday. I basically told the ultrasound tech that she was looking for a needle in a haystack. About 5 minutes into the ultrasound, after I had ‘enlightened’ her about insulinoma, she excused herself to talk to the radiologist. She quickly returned and said that both she and the radiologist recognized that proceeding with the ultrasound was virtually useless. This decision was made also acknowledging that I was booked for an MRI the same day. I became very ill the evening after tests. I’m guessing that fasting caused me to become ill. Although it was after eating that I became sick (vicious headache and nausea), I think the little bastard was rebelling against me for having starved him. I’m wondering if feeling brutal in that instanc relates more to things other than low blood sugar reading? I also felt that way during my 72 hour fast but at that time, my blood sugar was actually quite high (4). Anyhow, it’s a bit of a mystery. Now, I wait for the results of my MRI. I was thinking of Mike and hoping that like him my little bastard tumor would light up like a Christmas tree! I’ll see my endocrinologist on May 12th for the results. In the meantime, I’ll see my GP today regarding my elevated cholesterol and I’ll ask if he is aware of surgeons in our region that have experience with insulinoma.

    Take Care Everyone!

  48. Everyone,

    Regarding the insulinoma get-together, Peggy suggested after mid-June so that school is out. Father’s Day is 6/21 so 6/20 is probably not good.\ for traveling. That leaves 6/27, 7/11, 7/18, or 7/25. Please continue to let us know which of these dates you prefer.

    I hope that people will be inspired to meet up regardless of where they are in their insulinoma saga (i.e. searching for a diagnosis, waiting for surgery, recovering from surgery, recovering from recovering, insulinoma as a distant memory, etc.) Meeting face to face is likely to be quite beneficial for everyone involved – partners and kids included.

    P.S. I emailed Susie a few days ago and will do so again tonight. Perhaps there is a problem with her email??

  49. Pam,
    When can you come out?? I asked Susie to call me so we can make a plan. It might be just a casual get together here in South Orange County, but…if you’d like to plan something bigger maybe we could do it at Doheny State Park! The fund-ing may be a problem for me, but I’m all into planning, now that I have half a brain again! Wouldn’t it be great to meet some people that are still going through it all. I know it would have helped me a lot to have some personal contact with people who understood what I was going through back then. I would love to do that for someone.
    Where does Heidi live?

    Anyone else close enough to meet?

    Rhonda, susie would still like to hear form you.

  50. Heidi, Mike,
    i am so sorry this has been such a struggle, and i know how discouraging it must be to have to go through another surgery, as if the torture of the disease and diagnosing it waasnt enough to have already gone through. I know healthy happy days lie ahead… keep your chin up, you all will be in my prayers.
    Jackie,
    you and some of the others that had additional problems after surgery give a big boost of inspiration and encouragement to those who struggle and have complications! I am so happy to hear of your good news….. and still hoping we can meet up soon!
    pamela

  51. Hello everyone,
    Heidi,
    I thought I responded bad to this surgery, Mike has me beat. I am so sorry he will need to be opened up again. I was able to get rid of my abses with a second drain, however they debated as to opening me back up agian if the abses/infection would not respond to antibiotics. I am hoping he will not need a new drain after they remove the abses. I bet his spirit is really low these days. Try to keep him cheered up and to look forward to the summer. He will recover. I am thinking of you and praying for his healing.

    Jackie,
    I am so glad to hear you are doing better. I hope this will be the last of the stints for you. You too along with Mike and myself know what it is like to not get better when you know you should be. Full speed ahead on the recovery!

    Tatia

  52. Jackie,
    I sure hope this stent does the trick, with no signs of pancreatitis!

    Heidi,
    Wow, unbelievable how much Mike has and is going through. He must be a very strong person. I know I could not have handled everything without my faith, knowing that I was in stronger hands than just the doctors. Keeeping a positive mind set can be so difficult. I will continue to pray for him. I imagine he is on a priority list for surgery??

    Anne,
    It sounds like more than just low sugar..I hope you can find out what is going on soon!

    Rhonda,
    Keep pushing for the get together! I’m trying to contact Susie. How about late June (after schools out) or mid July?
    Anytime is a good time, though we are trying to plan a trip to Yosemite as well. We could always meet there! Who’s into camping? 🙂

  53. Hey everyone, I had my ERCP today and it was successful. The physician dilated the area of the duct that had the stricture and placed a stent. I go in three weeks to remove that one and get a different one that will stay in until it falls out on its own. Hopefully, that will be the finish line for me. I have been sleeping off the medication and I am a bit achy but other than that am doing great.

  54. Heidi– Sorry to hear Mikes going for more surgey- Damm thats a tough one- Hope this clears it up- you guys take care–All the best–Kim B

  55. My heart aches for the both of you and I can’t imagine the blow to Mike to have to undergo surgery again. Our heartfelt wishes to Mike and hope they can schedule him soon and get him on the road to recovery. You are defintely due for good news.

  56. Oh Heidi! I am so sorry for all that you are going through. 33 days! That is really awful. Things have got to get better soon. Glad you are nearer to home at least.

  57. And the bad news continues! Day 33 of Mike’s incarceration in hospital.

    Mike is the poster child for how not to recover from this surgery. Yesterday’s CT confirmed that the abscess has not decreased. His perc. drain is also not functioning any more, so today’s plan is – more open surgery to get out the abscess. Mike started vomiting in the last 12 hours again as well. Apparently the abscess is located between the right kidney and the exit of the stomach to the duodenum and that the stomach is partially blocked by it. Hence the vomiting starting again.

    Obviously Mike’s mood was very low today – he is exhausted, feeling lousy and emotionally wrecked.

    So, I will update again once this next surgery has been done – now waiting again for a surgical time slot to open up.

    Heidi

  58. Marcus, so glad to see you are in the final countdown. It will be worth it to not have to worry about blood sugars. My husband worried so much and I did not realize how much until after the surgery and I saw how emotional he was. It is hard on everyone.

  60. Anne, Palpitations and blurred vision are symptons my wife had. The other symptons I have not seen. One of the things that helped move my wife’s diagnosis along was that she kept very thorough records of what she ate and her blood sugar readings. She also wore a monitor that tracked her blood sugar readings for 72 hours and when they took it off and plugged it in it made a graph of her readings. We insisted on seeing the doctor because she was eating exactly as the nutritionist told her and still having so many lows. Her food records along with the graph and her own records of her readings is what prompted the doctor to do a second round of blood test that came back with the same results of the first test. Since her pro insulin was high while her insulin and C-pep were normal he ordered the 72 hour fast. The thing is he was the only Endo within a 45 minute drive from us. Since insulinomas are so rare he’d only seen 1 case in 8 years. My point is the doctors aren’t normally looking for this but when the patient knows something is wrong keep insisting on test.
    heidi and Mike, hang in there! Please keep me posted on Mik’e recovery.
    Jackie, I can see your postings.
    For us it’s 2 days to pre op and 9 days until surgery. My wife’s lows are more prevelant and every day she is in the 40’s several times. We can’t wait until this is over.
    Everyone hang in there and keep sharing. This site was a blessing to me!

  61. Anne, the symptoms you discribed are not similar to what I had. They sound serious and I know you are frustrated with the pace of the medical team to diagnose this. I hope you find answers soon.

  63. Hi Everyone,
    Things here still moving exceedingly slowly. may i ask advice from anyone who can help again?
    My partner seems to have taken quite a down turn again (with still no sign of getting the 72 hour test). Symptoms at present are ragingly high blood pressure that cannot be brought under control, quite severe depression, palpitations that have become more severe, blurred vision but most markedly, severe sickness and a good deal of pain just under the ribs. (The gp says there is some inflammation inside the abdomen and would contact the consultant – we are still waiting!) Does this ring any bells with anyone? Does it sound like insulinoma or not?
    Thanks everyone for your continued support.
    Anne

  64. Rhonda, welcome to the site! I had 3 pregnancies with my tumor and one without my tumor. I have to say, without is definately preferable! I gained much less weight for one. Also, when I got pregnant, my OB said that it was going to do horrible things to my scar, but the reality was it looks exactly the same now as it did before I got pregnant. I am actually still nursing my 6 month old daughter, wheras with the other 3 I quit very quickly because of the low blood sugar i thought nursing was causing. I only wish I had known then that it was not the nursing causing the problem. Good luck to you!

    Laura

  65. Hi Everyone,

    The situation is much the same, except a different surgeon (on-call shift change) visited Mike on Sat and Sun and was far more willing to talk about the situation than the one who has been on his case since he arrived in the PG hospital. Dr. P was not very forthcoming and Dr. A has explained much more.

    The change in Mike’s mood is noticeable. Friday night he was very depressed and didn’t feel he was getting any help, now he feels much happier. Dr. A told him the CT of last Wed. showed that the pancreas was not leaking, but he did have an intra-abdominal abscess that had formed. They are cautiously optomistic that the flushing and draining is allowing the abscess to drain but they are going to check with another CT on Tuesday and make sure. Because he has had such a hard recovery they are not wanting to rush in and do further surgery, but will if things do not improve they way they want. He is on 2 antibiotics and a full fluid diet, which he is tolerating finally. The drain is working, albeit not quickly.

    Dr. A told Mike he will be kept in hospital for another 7-10 days based on current factors – that bothered Mike, but he is starting to feel a bit better and now understands what is going on and why. Isn’t it always better when patients get the whole story, even if it isn’t always good news?

    My stress level is down a bit today too. I wish I could bring him home now, but at least he is not getting worse, finally. I have really realized how much I miss having him here in the house. My job has often taken me away on business trips and he has always been here, now I am at home and he is not – just feels wrong.

    Thanks again for all your thoughts and prayers – it is a good feeling to have knowledgeable friends near and far.

    Heidi

  67. Rhonda
    great idea to get some headway on a party! I know many of us have talked about this for a long time and are so excited to meet one another! Like i said in previous post from last summer, i would love to help in any way i can to help arrange or throw the party.
    For me, july 11th is hard because we leave the previous weekend the 4th on a week trip. All the other weekends are good for me.
    I think depending on the head count would be wether to have it at a restaurant or if someone is willing to have it at their house. Maybe Peggy and Susie and those of you who live in California can come up with the best location to meet. How exciting! let me know what i can do!
    Mike and Heidi … hope you are doing better, are thoughts and prayers are with you!
    Pamela

  68. For those of you who are interested in getting together this summer, would you mind responding to the questions below:

    1. Of the Saturdays in June and July, which do you prefer?
    6/6, 6/13, 6/20, 6/27, 7/11, 7/18, 7/25

    2. Which city in California (LA, Santa Monica, San Diego) do you prefer?

    3. House or restaurant? Lunch or dinner? Potluck or catered?

    4. Would you be willing to host at your house and/or be part of the planning committee?

    Please feel free to provide other suggestions or questions to the group.
    Rhonda

  69. Hello everyone……. especially anne, marcus, audra, rhonda, monique, welcome to the blog, it so good to hear your stories and us all be able to relate in so many ways! Also so informative on a personal basis….. keep fighting!!

    Heidi and Mike
    i am praying for the once and for all recovery!! my everyday prayers are with you!

    I am all for a party in L.A… or san Diego…. or even Santa Monica! I would love to help organize, plan, or help pay for some of the costs! that would be really exciting and so great to meet many of you! someone come up with a few more ideas… perhaps some dates, and then work from that!!

    God Bless everyone!
    pamela

  71. Welcome Rhonda,

    I would LOVE to meet with you and Suzie!! And anyone else who is interested and able. (Pamela!) I live right between LA and San Diego. My house(though humble)is always open. Just let me know when.

    I’m a little overwhelmed with all the posts, but I do keep up on everyones progress and I’m so thankful for how this sight has helped so many and brought us all together. It was a lonely disease before we were able to connect.
    Heidi, both your husband and you are amazing people. Keep the faith!
    Monique- the depression is the pit of the disease…KEEP
    EATING!!

  72. Tatia, Janet, and Angie,

    Thank you so much for welcoming me to this site. You do not realize how engaging and informative reading all of your posts has been. It has been quite an ordeal for me these past 16 months. However, getting a diagnosis and having the surgery have made such a difference in my – and my son’s – quality of life. Getting cured has also relieved a major burden on my husband.

    I am looking forward to contacting Susie via email. Jackie, I can see your post.

    Would anyone be interested in hosting an insulinoma get-together this summer in LA or San Diego?

    Rhonda

  73. I think I am having trouble with the site and being able to see all the postings. I did not see the initial posting my Monique007 or Marcus. I was wondering if all of you can see my postings. Let me know if you are reading this one. Thanks, Jackie

  74. Rhonda

    This is a message from Susie as she is having trouble with the unbound site! She lives in San Diego and wants you to have her personnel email address as she would love you to contact her. She also had a Whipple and is dying to talk to someone that has also had it for a insulinoma.

    Susier@san.rr.com

    Hope this is good for both of you!!!!

    Angie

    glad to be of service!!! x

  75. Rhonda
    Welcome to the site, it really is a great way of talking to others who do really really know just wht this condition entails. I know exctly where you are coming from and really pleased that another “inslinoma” has been stopped in ruining someones life. I bet it feels great to be “normal” again! I had a baby 12 years after my op, but I am sure I needn’t have waited that long. I had a normal pregnancy and my son was a normal forceps delivery. He was a healthy 8 pound 4 ounce baby. He is now 24! If I had listened to the doctors I would have had him terminated as i had other medical issues. However, my son was a perfect gift from God and despite being told he would would have health probelms , he recently has got married. I think you will know when your body is ready for another baby; no one knows your own body better than yourself, I have found this out after living through two insulinomas! Best of luck anyway to whatever you decide.
    Heidi
    I do hope you and Mike can stay strong; life certainly is dealing you both a very difficult time. My prayers and thoughts remain with you and Mikes doctors. Love to all.
    Janet xx

  76. Rhonda,
    You are a brave women! After having and fairing so well after a whipple I might add to be embarking on a new endeavor of having a baby. I only had part of my pancreas removed the tail and had a horrible recovery. My heart goes out to you. I had surgery Dec 9, 2008. I have only been back to or almost to my normal self for the last 6 wks. I admire you for letting others know there is life after this condition is taken care of even if you are left with life changing challenges. Please keep us updated as to how you are recovering. Glad to have you join the blog.
    Tatia

  77. I can’t imagine wishing for a pancreatic leak but maybe that would have been easier for Mike to deal with. I hate to hear he has an abcess and that there doesn’t seem to be a quick solution to all of this. My husband and myself talk about you both often during the day and you are both in our thoughts and prayers. Now that they know for sure that it is an abcess they can focus on the treatment. God bless both of you.

  78. This has been a confusing week. Earlier in the week, the surgeons thought Mike’s pancreatic duct was possibly still leaking fluids and they were planning to do an endoscopic procedure (ERCP) to put in dye and take x-rays to have a look. If there was a leak they would put a stent inside the pancreatic duct to close it off. However the same day (Wednesday) they also did a CT scan to review the fluid pocket around his stomach. This was done first, and the surgeons reviewed it and decided that there was no leak, rather the fluid was from an abscess. However, they didn’t communicate this with us clearly, just cancelled the ERCP and just arranged to try and get the fluids moving again with drain flushing. So we haven’t had the full story until today.

    Poor Mike is in a holding pattern, they flush and drain, and he sits feeling frustrated, lonely and despondent. There will be another CT next week to see how much of the fluid has been removed. The fluid is a thick goo, so it is not moving well so far, and they may ultimately decide to open him up again to get at the abscess. Otherwise, Mike is in relatively good condition – he has always been very healthy up til now and that is apparently standing him in good stead. The doctors don’t want to do the drastic step of further surgery if they can just wait it out, but it is certainly hard to wait and wait. So that is what we know today!

    Audra,

    I have to admit my concern and involvement is part of my personality – I am a ‘registered’ control freak! I need to know about everything that affects me and my family and I don’t like being out of the loop on anything. The doctors are frantically busy in this town – we have insufficient medical personnel for the size of our population and our hospital is always overburdened. I do appreciate they are working hard and maybe they don’t always tell us every detail, but they do care.

    Heidi

  79. Hi Everyone!

    Hi Monique! Sounds like you found a good doctor who takes you seriously and that is an excellent start! It’s interesting that you experienced such a sudden change in your diabetes–glad that you will be having your fasting test in the near future. The symptoms you describe also sound very familiar even the anxiety and depression. I’m sure you’ll have some answers after your fast–good luck!

    Hi Marcus and Heidi, I must tell you how much I rely on my husband’s support as I struggle through symptoms and the anticipation of surgery. I know how much he worries. Spouses are so very important and you are both obviously very attentive and invested in your partners’ well-being. I truly commend you both and believe it’s important for spouses to feel supported. It’s great that you have found this forum. I do hope Mike is moving toward healing and that his ERCP went well. Someday soon he will be free from bloodwork and IVs!

  80. Hello all. I have been sick for the past 15 months with horrible hypos. I am being screened for an insulinoma and doing the fasting test this Saturday. What made it really difficult for me to find a good doctor who took me seriously was that I am diabetic. But since 15 months ago I have not had one high blood sugar and had to go off all of my diabetic meds and before it all started my blood sugar average was around 260. Then suddenly I began gaining weight and could not keep my blood sugar up at all. I remember eating and one evening being able to get my blood sugar up to 111. Because of that I happily thought that I could take a quick walk around the block. I didn’t even make it around the corner and I was at 45. Another time at my docs office I was below 30. So I feel dizzy, have headaches, feel like I am really spaced out all the time almost like I am really drunk, extremely weak, and get hit by these lows. I also started having issues with anxiety and depression becasue of all of this. By the way I am a 27 year old female in Las Vegas, NV 🙂

  81. Heidi, I am so sorry to hear that you are still dealing with this. Thinking of you and hoping for resolution soon.

    Marcus, I am surprised that your endo would dismiss a high proinsulin reading. It is so interesting to hear the various ways people get to their diagnosis. Best of luck to you guys. Keep us posted.

  82. Marcus, best wishes to your wife and to you as you go through the surgery. It will be wonderful for both of you when she is back to normal glucose levels. It is so wonderful and worth all the hassles. Please keep us posted.

  83. Laura – Thanks for your response. We live in a small town in South Carolina. We saw the surgeon and had a CT scan on 4/10. The tumor showed up and is on the very end of the pancreas. The Dr. said he is 95% sure he can do this laparoscopic. Her surgery is 5/8 in Greenville S.C.

    Heidi – I’m sorry to her you and Mike are having such a tough time. I’ve only thought about my wife’s surgery and nothing about the recovery. I hope all is well soon and you both get back to a “normal” life.

    To Anne and everyone else at various stages of diagnosis and treatment, hang in there. I hope to write back to all of you in just a few weeks with my wife on the recovering side of this disease.

  84. The ERCP is the procedure they used to attempt a stent placement. I was sedated through the entire procedure. They do inject dye to watch the pancreatic duct and they can find the area that may have a leak. They took really neat pictures too. They got my first one in but it was not long enough to cover the injury site. The next two were unsuccessful. On the 30th will be another attempt because of a narrowing at the site where the duct healed and they want to try to dilate that area. One risk is developing pancreatitis after the stent attempt. I got that with the first one and had to take antibiotics and with the next two attempts I just took antibiotics immediately as a prevention. After the test was completed and I talked with the physician I got to sleep off the sedative for the rest of the day. They were really good naps.

  85. Tomorrow is Mike’s ERCP procedure (Endoscopic retrograde cholangiopancreatography). What a mouthful. “Through the endoscope, the physician can see the inside of the stomach and duodenum, and inject dyes into the ducts in the biliary tree and pancreas so they can be seen on x rays.” So I am assuming that they are looking for damage to Mike’s pancreatic duct.

    Jackie,

    Is this the procedure they used to try and put a stent into your duct? I recall that you had several attempts but can’t find any description of just how that was to be done. Morbid Curiosity on my part, since I think Mike might have the same problem. He has been vomiting again for the last couple of days, so the fluids are definitely building up again. He still has the drain but it is not doing anything right now. We are at week 5 now on Thursday, so there is something not working that is for sure. Of course, I always seem to miss the doctors’ visits, so I never get to ask my questions. This would be fascinating, if it wasn’t my husband they are experimenting on!

    Heidi

  86. Howdy all– sorry to hear mikes still in the hospital- It was good to meet him but I hope you did not feel to uncomfortable having a stranger in your room ( the nurse thought I was a little weird)but oh well! you and mike take care and I hope you can be done with this soon! Kim B

  87. Hi Everyone,

    Just so you know, Mike’s blood sugar was 5.7 yesterday – so the surgery was a definite success! It’s the cure that is trying to kill him! He started vomiting again yesterday and he is having a CT scan this am to see if the fluid is building up again. His drain has stopped producing after 4 days (this is a pattern he has developed) and now he is getting sick again. So round 4 has commenced. I just don’t get it! Later this week, they are also doing a scope to take pictures of the pancreas wound to see what they need to do to fix the problem. Give me strength…..

    Janet and Angie, one of our doctors told us that surviving lows without losing consciousness was a sign the problem has been developing over a long period of time. It is the sudden changes in life patterns that sets off the warning bells and when people collapse. For Mike it was changing his diet to reduce calories and lose a few pounds. Little did we know that the weight gain was a symptom of a much bigger problem.

    Mike is an upbeat kind of guy and he is still optomistic that he will get through this and go back to being a healthy person who never need a doctor. His current mantra is “no more blood tests or IV’s for at least 10 years, please.”

    Well, must head out to see what is happening at the hospital today.

    Heidi

  88. Hi, Its amazing how some of us are still conscious on such low readings. I think for some of us whose bodies have got used to functioning on such low blood sugar. I can imagine how they would be surprised. I have been still known to be walking round at 0.9, confused however! The lowest reading was 0.4 when I was in a fairly deep coma after falling into a coma on a bus and taken by paramedics to hospital. Hope everyone on here gets sorted soon, its so horrilbe for those recovering with all its complications and those awaiting diagnosis and tests. love to all.

    Janet x

  89. Heidi

    Just read about MIkes 72 hr test! Normally a reading of 1 or lower and you are in a coma so Im not surprised the hospital staff were shocked that he was still conscious! My 72 hr test I had to wait for two results below 2 – 1.9 and 1.6. My normal count was 2.5 generally. My lowest reading when I checked my blood regularly was 1.6 and I felt “light headed” at that time. I believe when you have had this condition for some time your body can cope with very low counts until you push it over the edge, eg exercise!

    Anne
    Heidi is right about being tough – shout loud and make a fuss its the only way to get things moving! And I have said before know your information – find out everything, ask everything and ask again. If you think its not right shout!!

    If youve read any of my posts at the beginning you will have read they tried to put me on an insulin drip before my op!! Very very silly doctor hadnt read my notes!

    All the best Angie

  90. Hello everyone. I have spent the last few days reading almost every post on this site. I am a 31-year-old with a 16-month-old son. I have had severe hypoglycemic symptoms since three weeks after I gave birth to my son. I saw several specialists, including an endocrinologist. I was given a glucose meter and diligently checked my blood sugars (oftentimes in the 30s and 40s and sometimes no number because it was below 20). I did a 72-hour fast that included a low of 37 within a couple hours of being admitted. Unfortunately the results were considered normal based on my insulin level also being low. After the fast, my endocrinologist communicated with me only via phone and did not order any blood work or other tests for the rest of the year.

    A year later (this past January) I stopped breastfeeding and reported my low numbers as usual via phone. My endocrinologist redid the blood work and finally ordered my first CT scan. There was a large 22 mm tumor in the head of my pancreas. I had the Whipple procedure on March 9th. I was in the hospital for two weeks. I had minor issues (such as allergic reaction to pain meds) but no major complications. I was not able to eat or drink for 10 days. My recovery at home has been good and pretty fast.

    I have a few reasons for sharing my story. The primary one is to give a personal account of a Whipple and let people know that while it is serious it should not be dreaded.

    Another reason is that I live in Northern California and would very much like to meet up with people from this site. A few of you have mentioned Santa Monica. I would be willing to travel down there some weekend for an insulinoma get-together.

    Finally, once I am fully recovered I would like to embark on my second pregnancy. I am eager for experiences and advice regarding timing of pregnancy after surgery.

    Thanks for reading this!
    Rhonda

  91. Thank you all for all your support. Its good to hear so much useful information and to gain strength from being part of such a caring community even though i am new to this group. I will fight with renewed vigour now.

  92. John, thanks, we are all holding our breath these days….

    Anne,

    Mike’s 72 hour test lasted less than 1 hour, since we went down to the hospital’s blood lab first thing in the morning, he had not eaten since bedtime the night before, and he tested himself upon arrival, and was already 2.7 (49) and they called the local specialist, who told the lab to proceed immediately as he was already in the ‘zone’. The tests were sent directly to a lab in Vancouver which is our major centre, as our local lab did not have the procedures to even do some of them. Once the blood draws were done, Mike drank OJ and had a couple of granola bars, and we stopped off at a McDonalds (very rare for us) for a egg sandwich. Once topped up – he was fine again. Those test were done for the endocrinologist in Vancouver, since we don’t have one here.

    When Mike was admitted to the emergency apartment originally, the same specialist did a 72 hour test after they had gotten Mike stable with food and a glucose drip. Then they disconnected the glucose and left him and it took about 14 hours to bottom out at 0.7. During this test they took blood every two hours and did finger pricks every 1/2 hour to monitor him. The entire staff were amazed that Mike was still conscious at 0.7 (13) but he was still holding conversations with the nurses.

    As to exercise, Mike rapidly developed the inability to doing anything physical, since it would bring on a low very quickly, and he gave it up. His work (teaching) involves being on his feet and he was always complaining about sore feet, but that may also have been from the rapid weight gain he experienced with the increased food needs.

    Get tough, and start demanding you get the test done. If you don’t have a glucose monitor, get your hands on one and start tracking the results – it is a pain, but vital information for the medical people you are dealing with and good evidence you are needing help soon. Just agitate and get noticed – ask for your rights. I will say that here in Canada, where our medical system is more like the UK than the US, we did find that our medical people were working quite hard behind the scene to orchestrate things for Mike. It was not obvious at first, but suddenly all the pieces fell into place and we got into the right place.

    Thanks,

    Heidi

  93. Hi all – and especially to Anne with your questions and doubts – and Heidi with Mike’s on-going troubles.

    My heart goes out to you all!

    Anne – I never had swelling feet or hands. Insist on getting to the bottom of this thing now. My experience with the 72-hour fast thing was this. I turned up at the hospital and was CT-scanned first, starving hungry and fearful of collapse. Then I walked over to the clinic for the 72 hour job – a day-bed clinic only, comfortable and clued up – where I expected to ‘go off’ soon but didn’t – for over four hours! Amazing how long we can control these episodes, isn’t it?!
    When I did, it was magnificent! I was incoherent and my wife tells me I got amorous with all the nurses! I also hid under the blankets. I remember nothing of it. Then they finally fed me and got me back before sending me home. All this was still under the National Health and was enough to confirm their suspicions and get me operated on privately, within a few weeks – and get me cured.

    I realise that, being in the capital city (London) opened more doors more quickly. But I also begin to suspect that the doctors here in he UK have more experience with this little tumour and all its horrors. They actually discuss cases weekly and have conferences and meetings about patients, comparing notes and running their ideas by their colleagues. You over there must demand the same. I have actually discussed this varying experience with my endocrinologist and my surgeon – and they are well aware of the patchy shortcomings Stateside.

    Mike – get strong again, please. It’s been too long now!

    John

  94. Anne, I have 2 ideas for you. First, my endocrinologist did my 72 hour fast at his office. I got there at 8am, (my husband had to take me because I could not eat before so I knew I woudl be low before I arrived), I brought my blood tester with me. when I got there he drew blood and I checked it myself. Then he had me sit there and check my blood every 30 minutes. He also did a couple other blood draws himself. It was done in 2 hours as I continued to fall. Maybe suggest to your doctor that you could do this type of test and skip the official admit to the hospital 72 hour fast.

    Second, you should get a tester to have it for yourself. Even if you get a diagnosis, it will take time before you have your surgery. I used to test my blood 10-15 times per day, but at least doing that made me a little more in control.

    Good luck!

  95. Has anyone experienced swelling feet and hands after the slighest bit of exercise as part of this condition?

  96. Well, another day, another problem. The assorted cultures have come back from the lab finally, and Mike is positive for VRE, Vancomycin Resistant Enterococcus, which means he is in isolation at the hospital. He had been on ‘screening’ while the labs were done, which involved no contact precautions, but now he is in a single room with strict precautions including gowns and gloves. The best part of this, is he is now away from the old man roommate, who has been having a hard time adjusting to being in the hospital, so maybe he will get a few more hours sleep per night. So he is now in Surgical North Pod B, room 3227, on 3rd floor. He can still have visitors, you just have to get covered up and no hugs or kisses!

    This bacterial infection is hard to treat, but not necessarily a problem for Mike, rather he can transmit it to people with low immunity who cannot tolerate it. So he is not in danger from it at this point, just infectious. It certainly is inconvenient though. He has been taken off IV today and should be getting back on a regular diet soon. The surgeon is going to do a CT scan earlier in the week to check on the drainage, and some type of scope at the end of the week to check out the leaking in the pancreas. So now we wait and see how these goes. Otherwise, he is feeling good, but has very little strength after being hospitalized for so long now.

    Jane, welcome to the club. Did you go to Prince Rupert for the ferry trip to Vancouver Island? When the weather is good, that is an amazing trip. We did it 5 years ago and it was marvelous. This is such a big country, isn’t it!

    Thanks!

    Heidi

  97. Jane,
    Please could you give me a first name for Mr Mirza or contact details if you have them. Thank you so much

  98. Anne
    It sounds like you really need to make a nuisance of yourselves. I am surprised that there is such a wait for the 72 hour test. My first diagnosis took ages but the medics did work really hard to try to speed stuff up. I live in the Midlands. My op was done at Dudley Road Hospital which is now City Hospital in Birmingham, but I now go to Selly Oak to see the consultant for my further insulinoma treatment as I have a recurrence. Hope you get something sorted soon as it is so horrible this condition. We all know wht you are going through. Chin up! Love to all as my thoughts remain with you all.
    janet x

  99. Anne,

    I had an insulinoma removed in May 2007 at Queen Elizabeth’s Hospital in Birmingham by Mr Mirza. Once I got referred to him by my local hospital things sped up. In fact he even rang me to talk to me at home after work when I had not turned up for an appointment for the Endoscopy which was to confirm the site of the tumour before the operation. (The appointment for it had been arranged so quickly that I had the letter with the date after the appointment!)

    Like most of us, getting the diagnosis was the problem. The ward at the local hospital where I went for my 72 hour test had not got a clue why I was there or what to do. Even when the consultant explained it all to the nurses they said they couldn’t just watch me while my blood sugars went so low as it was too dangerous. They were relieved when it was called off after 12 hours because they had the results they needed from the blood tests.

    So, Anne, you must question everything even though you may feel you are being a nuisance. Ask when to expect appointments. Don’t be afraid of mentioning the information from this site. I know that the doctors, when I first was taken in to hospital unconscious and could only be revived by massive doses of glucose, looked at the internet. I found all but one (local) doctor very good, informative, caring and very, very interested! This sole doctor did seek me out when told that I DID have an insulinoma to shake my hand and apologise (sort of!)

    Once I was at the QE the care was good, waiting times negligible and they knew what they were doing. I, like everyone, else am happy with the result. I feel better than I have for years.

    Heidi

    It is not good to hear of Mike’s difficulties post op. I once passed through Prince George on my way to Prince Rupert. Little did I know then that it was the insulinoma capital!! Nevertheless, it is a very beautiful part of the world. Good luck.

    Jane

  100. Hi All,
    Thanks for your thoughts, Angie. It’s great that you were able to avoid the Whipple! I’m not sure why the thought of ICU freaks me out. I guess it’s not so much ICU as just knowing how major the surgery could potentially be and the risks and complications that could accompany it.

    Anne, I hope you are able to connect with the appropriate resources to get things moving along for your partner.

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