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. Tatia, I hope you feel better soon. I am scheduled for surgery Jan.22nd and am really nervous about it. I have read all the postings and am so happy I found this site. It has already helped me to feel like I am not alone with this. Take care.

  2. Tatia

    Give yourself a chance!!

    Everyone is different recovering and that also depends on how severe your surgery was!
    I didnt come out of hospital for two weeks – I didnt drive for at least 6 weeks – one and half years on my stomach muscles are still uncomfortable. Ok so I have a 9inch scar across my abdomen but Im sure other people had must worse especially if they had a whipple procedure – You dont want to damage yourself trying to recover too quickly!

    Take one day at a time and be patient – the best is the insulinoma is gone! however long it takes it will be a blessing!!

    good luck and CHILL!!!

    Angie

  3. Hello everyone,
    I hope everyone is enjoying the holidays! I am at home recovering and it seems to be taking forever. I am not sure how long it took all of you to recover but I would love to hear how long to expect to be up and moving, how you passed the time etc. I am two weeks and 2 days from my surgery and feel as though I am not ever going to get better. It is very hard for me to remain still even though I don’t have much energy. Just some thoughts on how you all managed and what helped, sleeping medicine, hospital bed at home etc. You were probably all much better off than me and think I am totally strange, that’s okay too! I would just love to hear from those who have recovered and what you did to get through it.
    thanks,
    Tatia

  4. Hi everyone. I too have been diagnosed with an insulinoma pretty quickly. I had been reading online to see what could be causing the low blood sugars and mine was classic symptoms. I am scheduled for surgery on Jan 22nd. You can bet I am scared. Laproscopy is not an option due to the location. Mine is between the neck and body of the pancreas so it is the large abdominal incision. I was not prepared for that and was quite a shock. I am also a nurse which lets me know too much. I just wanted to thank all of you that have posted. It has been great reading all the postings and makes me feel not so alone. Merry Christmas.

  5. Hello All,

    It is good to read about someone else from England. Reading all these descriptions of symptoms I have to say I had forgotten just how frightening it all was before I knew what was the matter. I had been ‘diagnosed’ with epilesy, been given antidepressants for ‘depression’ and attended 2 courses of CBT before falling into a coma the first day of the summer holidays (I’m a teacher) which really focused people’s attention! I was asked many times if I had taken drugs or had someone given me an injection which I thought were really peculiar questions. However, the hospital was great and opened up the scanner and x ray at 3 in the morning. They sent me to a much bigger hospital where someone had the expertise to do the operation.

    My life is now far better. Like you all say, it doesn’t now revolve entirely around blood tests 5 times a day, food, snacks at all hours and worst of all worrying when or how the next attack would strike. ( I’d had to stop doing part of my job before the operation.) Occasionally now I take my blood sugar level to give myself the confidence that all is still OK. The hospital still sees me twice a year because, I think, I was for them, an interesting case. So, all you newly diagnosed, you WILL get better as soon as the insulinoma is removed!

    Good luck.

    Jane

  6. Hi ALan & John,

    Great news that you are on your way to surgery! You’re actually quite lucky that your tumors were found so quickly as you probably know from reading this site. Keep us posted on your progress!

    Kim

  7. Hi Tatia,

    That’s great news! So happy to hear that you are on the road to mending and the days of dealing with an insulinoma are over. It takes a long time to completely recover. Someone told me you get to 90% pretty easily but that last 10% takes longer. I think that was true with me. So take it slow. Isn’t it a liberating feeling to not be a slave to food?!

    Take good care. I’m so happy to hear that you are well.

    Kim

  8. This is a reply to everyone including John and Alan who I have just heard from. I am glad you have found this blog, it will help you tremendously as you decide what to do with your insulinoma. I have just had surgery, December 9. I am now at home recovering. I had a complication after surgery where I was bleeding internally. They were able to leave my spleen even after removing the tail of my pancreas. An artery branching off the spleen was bledding. I had to have a proecdure done to stop the bleeding and also have a blood transfusion. This delayed my leaving the hospital. I finally arrived home 8 days after surgery. I am doing fine at home and slowing recovering. I know many of you recovered much quicker, climibing mountains and such but not so in my case. Some people react better to pacreatic surgery than others as my doctors have told me. My sugars are around 105 to 110 most of the time. This is completely strange to me considering I was always below 60 and usually in the 40’s or below even after eating every 2 hours all through out the day and night. I keep waiting for my sugars to drop, it is just so hard to believe I can be “normal” after my previous circumstance just days before. I trully feel I have a new life and am anxiously waiting to start living it after I have fully recovered from surgery. Right now it is just wonderful to eat only when I want to or am taking pain medicine and to be able to eat what I like not what I have to in order to keep blood sugar levels up. I hope you all have a wonderful Holiday season and consider your situation and what you would like to have happen. John and Alan, then ask on the blog any questions you might have as you move forward in the war against the insulinoma.This sight was incredibly helpfull to me and changed my life. Look forward to hearing from all of you soon.
    Tatia

  9. HI John

    Nice to hear from someone in London every now and then! Sounds like you have been fast tracked! I thought the NHS was good dealing with me within a year from first suspicion to op!

    Diazoxide is no fun as most of us on here have found – I ended up taking diuretics to counter the water retention and really I dont think the diazoxide did much good anyway!

    Sounds like you will be sorted very quickly tho so good luck!

    HI everyone!

    Im keeping up with all the posts and with everyones progress and wish you all well!

    Have a great Christmas and eat lots of sugar – what an excuse!!!!

    Best Wishes love Angie

  11. This forum has been so interesting, comforting, entertaining and helpful over the last few months since I got symptoms and got myself investigated through the UK national health system. I am a coeliac, so I suspected these symptoms were related to that – but they are not, of course. 5-hour fast tests revealed incredibly low numbers – almost comatose. Then the 72-hour fast test – this revealed the same things. First scan was a CT scan – and my doctor called to say it was clear… but an hour later I was called by the senior endocrinologist who felt sure there was something. At that point I got sucked into the private medical world and things went very fast. Consultation followed by octreotide scan (three days of it, radio-active, huge silent machines) but that was another ‘blank’ – and then the noisy, long MRI which really worked! A further consultation – and there it was – 1.7 cm on the head of the pancreas. I meet with my surgeon next week! Meanwhile I was on diazoxide – and that was not a good experience. Puffed-up face, messed-up stomach, general glumness, episodes very erratic and profound – no fun at all.
    I am a pianist and teacher in London, cancelling both concerts and teaching – can’t wait to get this thing out. Eating at all hours, waking myself up to snack, carrying food to concert dates, loss of focus, fatigue, early morning rambling nonsensical speech – who needs this crap?!

    Good luck to all of you – all of us – every one of us. It’s rare and fascinating – but it’s not pleasant, is it? I am thinking of you all while approaching the last stages, hopefully!

    John

  12. Hello everyone!

    I’m Alan from the United States and I thank all of you for disclosing your experiences with insulinoma.

    I was just recently diagnosed last week with insulinoma, even though I have lived with the symptoms for the past five years. My heart goes out to all of you that have experienced the life-altering struggles that are associated with this disease – I know all too well the devastation and fear this condition creates.

    My story is a bit different than most of yours. I am 48 male and have been an avid bodybuilder for the past 29 years. I was on an exercise schedule that included lifting weights and cardiovascular training 5 to 6 days a week for most of those years. Along with exercise, I also ate small meals every 3 hours – which is common in the bodybuilding world to maintain a low body fat level.

    About 5 years ago I started developing hypoglycemic symptoms if I occasionally missed one of those frequent meals. I thought I had just trained my body to become so efficient at expecting food every few hours that now I depended on it. Unfortunately this eating schedule also masked the true cause.

    The symptoms progressed and two years ago started becoming overwhelmingly regular. If I missed one meal I would go into a state of despair, blurred vision, confusion, sweating, and trembling.

    For a number of years I owned a thriving seminar business where I would go into businesses and corporations and give talks on business communication and customer service. With the onset of these symptoms I had to stop scheduling seminars and talks and eventually transforming my business into phone consulting since leaving my house and experiencing an ‘episode’ is terrifying for me.

    It has become so devastating that I must plan every venture out of my house. I know that I have two hours before the next feeding and I have developed an intricate planning process that includes carrying peanut butter sandwiches with me everywhere.

    After thinking I had to always live this way I went to a new physician two weeks ago for a complete physical and when my lab work results came back my doctor called me immediately because my glucose level at the time of the blood draw was 20.

    A CT scan was immediately completed and sure enough a small tumor was detected on tail portion of my pancreas (1.5 cm).

    I have been given a blood meter (like one that is used for diabetics) and interestingly when I get up in the morning my reading is always in the mid 80’s – but then drops dramatically into the 30’s and 20’s within two hours after the initial first read. I never seem to get above the 50-level throughout my waking hours.

    I read all of your entries with interest at how differently insulinoma affects each of us. I find that the only type of food that alleviates my hypoglycemic symptoms is a combination of complex-carbohydrates, protein, and fat (hence the never-ending peanut putter sandwiches!) Fruit juice and sugary foods is a fast track to a drop in glucose for me.

    Fortunately I meet with a surgeon tomorrow (Tuesday, December 9, 2008) for more information.

    My feelings on my newly diagnosis are mixed – I’m so thankful that it has been detected (especially after reading the traumatic experiences that many of you have gone through with exploratory surgeries) and yet very apprehensive with the inevitable surgery that awaits me – especially now that the holidays are here.

    I thank all of you that have given your personal accounts of this rare condition – I can’t tell you how thankful I am to have found this board. My thoughts are with each of you during this time – I’ll keep you posted on my journey and hopefully I’ll have great news shortly.

    Thinking of all of you,

    Alan

  13. Hi Tatia,

    That is great news! I’m sure you are excited and perhaps a bit nervous. It is a big step but well worth it. There is so much information by now if you read all the way down this blog but please ask any questions that you have. I know for me it relieved a lot of worry to be able to ask people who had been through it. I think the main things that stand out for me are to get up and walk as much and as soon as possible – although I guarantee you will not feel like it! Also stay ahead of your pain meds when you go off the drip line. Take them before you need them because it has a way of creeping up on you and then it is too late!

    Good luck and we will be thinking of you!

    Kim

  14. Tatia,

    I’m excited for you and I’ll be thinking of you on Tuesday. I hope you’ll be able to have it done laparoscopically and you’re not worrying too much about it. My tumor was removed from the tail of my pancreas this past February. They did have to take a small part of the tail with it, but were able to leave the spleen. The recovery was not too bad, the recovery room was a night mare but I think that’s because the surgery went a lot quicker than anticipated. They had to bring me out of sedation early and I had a lot of anethesia. The pain meds worked well after they finally gave them to me. Getting out of bed the first time is pretty hard…but I was only out three weeks total and it is all so very worth it. I hope everything goes well, and if your already home reading this, please let us know asap how you’re doing.
    Though we don’t all blog so much after being healed and getting a life back, I’m sure everyone keeps up on what’s going on as I do.
    Having insulinoma is a life changing experience, and I’m glad another person is on the other side.
    Congratulations!
    Peggy

  15. Hello everyone,
    I just wanted to update you on my progress. My husband and I are leaving today for St Louis. My surgery is scheduled for this Tuesday the 9th. I am looking forward to being well and having this experience of my life behind me. Although I do not know you all personally I really would like to thank you for all of the information and support I have gotten from you and this blog over the past few months. If I had not found this blog I know it would have been a longer and more difficult road to success. All of the information I recieved from all of you has made this experience bearable. Any thoughts or suggestions for what I am facing over the next few days would be greatly appreciated. I will keep you posted as to my recovery. I wish you all a healthy and happy year to come. I will continue to check in with the blog and hope you all will do the same. May you all have a blessed Holiday season.
    Tatia

  16. hi all. After getting the run around from a number of doctors who thought I was making this all up I finally made myself an appt at Cleveland Clinic and got a diagnosis of hyperinsulinemic hypoglycemia. The doc put me on a very low carb diet, gave my Carbos and diazoxide, and has be scheduled for a mixed meal study on the 15th. The low carb diet was very hard to adhere to, esp since the first day was Thanksgiving, but i did it and my blood sugar is more stable than it’s been in years. I’m also scheduled to see the gastric bypass docs at Cleveland clinic for a consultation. Evidently this is more and more a common phenomenon in people who have had Roux En Y gastric bypass.

  17. Hi there,

    I am getting on with things and have gotten over the jet lag following our flight home. I’ve seen my doctor and am in the process of finding out what to do with this aneurysm. I’ll need to see a vascular surgeon to find out what they plan to do and I have an appointment booked for early December. The radiologists at USC thought it would be possible to treat it via a vein rather than by open surgery. If I do need surgery, they’ll be able to have a good look at my pancreas at the same time so even that won’t be so bad. I’m grateful to have found this problem as it would be a whole lot worse if it had ruptured.

    Tatia
    The aneurysm itself is on a blood vessel on the SMA or superior mesenteric artery which is the main one going to your intestines. It’s not actually on the pancreas but is very close. It’s in a difficult position so if surgery is required it will be open not laparoscopic.

    Peggy
    Thanks for your kind words. I just may have to live with what I’ve got for now. i’m sure some kind of solution will present itself for me in future. Dr Parekh and the doctor who did my EUS are sure there is a tumour in there somewhere so maybe one day I’ll find it.

    Take care everyone and thanks again for all the compassion you’ve shown.
    Hazel.

  18. Hazel,

    I am sooo frusturated for you… sorry, I’m sure that doesn’t help at all! But as Dr. Parekh had said, it seems their technique and their equipment should’ve shown an existing tumor. I had two EUS’s done at another hospital which didn’t show the tumor either. I remember how it feels to have your hopes up so many times and be disappointed. I’m so sorry. Having suffered over 15 years, I had eventually given up searching for a cure and decided to live as well as I could with my condition. It wasn’t until then that I found this sight and was encouraged to get back in the fight. I’m sure your time will come Hazel.
    This aneurism is your main concern right now, and I am hoping that you find a good surgeon who can take care of you. Did Dr. Parekh tell you if they thought it could be done with endovascular repair instead of open surgery?
    I’m guessing your time here didn’t feel like a vacation and I’m sure you’re glad to be home where you hopefully have some support. Please know that we are here for you in spirit.

    Peggy

  19. Hi there,

    Thanks so much for all the supportive comments. This is really such a great group of people who have made a difficult time for me so much easier thanks to everyone’s compassion. My plans changed almost as soon as I posted as Dr Parekh rung to say he’d like me to do an endoscopic ultrasound in NZ and exploratory surgery as he was sure I still had a tumour in there somewhere. As I can’t get the EUS in NZ-there is only one doctor in the whole country who does them and I haven’t been able to get one – I stayed in the States to get the test. I had to wait another week to get it but now I have had the EUS which didn’t show a tumour. We’re finally flying home today.

    My next challenge is to get this aneurism sorted out. I did ask if it could be causing my symptoms but was told it wouldn’t do that.

    Hazel.

  20. Hello Tatia,
    My insulinoma was removed from the head of my pancreas. The morning of my surgery is when my surgeon told me it would not be done laproscopically. Although having it done that way would have been so much easier as far as recovering….. i was just so ready to be done with my sickness and all the symptoms that i suffered daily, i tried to not stress to much over the pain and recovery, and just focused on how wonderful my life would be healed and healthy. I too, had a hard time believing that after all the years of misdiagnosis and suffering, and close calls with accidents, craziness, confussion, headahes and low energy, that it could all be healed with one surgery. Kim is right, the nurses want you to get up and move some. That was hard. For me, the pain was pretty bad when i first woke up, then in my room they gave me lots of drugs and a pump. I dont know how sensitive you are to these drugs, but i had to have extra anti-nausea medicine. If you are sensitive, i would recommend this before hand. My back had a-lot of pain. Im not sure if that was just because of the location of the tumor, or if everyone has had that. I was very pushy about staying the night in the hospital the night before surgery. Yes they did give me a dextrose i.v drip. I think its too risky to not eat the night before, especially if you need something to eat every two hours, and then your nerves will be working. I would be insistent on staying the night before if at all possible.
    Its so weird for me to think back and remember how sick i was. You too will be thinking this way soon. Your christmas with you girls will be like no other! Just to be able to enjoy them and take of them being healthy is the one thing i try not to take for granted! Keep us posted in the weeks to come, Dec.1 is going to be here in no time! Hope i was able to answer some of your questions. (I like to ramble!) Take care!
    Hazel,
    Hope you have been able to see your specialist in NZ! Let us know how you are!

    Pamela

  21. Hazel,

    You have really been through the wringer as they say here. I was so sorry to hear your news. I am thinking of you and hoping that all goes well in NZ. Keep thinking positive thoughts. You have many thoughtful and caring people here wishing you the best.

    Kim

  22. Hi Tatia,

    I hope you don’t mind my intruding on your correspondence with Pamela. My tumor was also on the tail but I didn’t have laparoscopic surgery. However, two weeks after surgery I hiked up a small mountain in my town! I was feeling a little ill afterwards but it felt like progress. I didn’t have any complications after surgery and the nurses and doctors made sure I got up and walked a lot (more than I felt like!) while I was in the hospital. As undesirable as it was, I think it helped me to recover quickly. Getting to 90% was pretty steady. The last 10% stretches out and a year later I still don’t feel all there but I’m close. I was lucky to have my insulinoma diagnosed relatively quickly. It was a year roughly that I had severe symptoms. Perhaps if it had been longer I would have been in worse physical shape going into surgery, and recovery might have been slower. Who knows.

    I too was worried about making it through the night before surgery because I was told not to eat. After I told them how concerned I was, they said I could have clear things all night. The kitchen at the hotel made A LOT of jell-o for me and I got up every two hours to slurp down a big glass of it. I had a Plan B which was to head to the ER if I started crashing.

    I hope this is helpful. I am glad that you are getting close to resolving this. Your life will be so much better. Good luck and keep asking questions! It is a huge undertaking!

    Kim

  23. Pamela,
    I have been looking over the blogs and came across yours tonight. I have been diagnosed with and insulinoma, finally! I am scheduled to have surgery in December. I saw that you were to have laproscopy but had to spend 7 days in the hospital. My doctor told me if he remove the tumor laprosopically he will and I would probably only have to spend 3 days in the hospital. If you don’t mind telling me about your experience in the hospital and your recovery too. My insulinoma is in the body towards the tail of the pancreas. If I cannot have the tumor enucleated then it will be cut out with a distal pancreatectomy and spleenectomy. I have two young daughters 3 and 6 and am just wondering how long it took for you to be out of bed and feeling better. I plan to have my surgery at Barnes Jewish Hospitla in St. Louis. I also read that you were admitted to the hospital the night before, was that so you could be hooked up to an IV with dextrose. They told me to not eat 12 hrs before or drink anything for 6 hours before surgery. I can only go 2 hrs between eating. I am a little worried. Any thoughts or suggestions you might have would be very helpful. I am glad you are doing well and have begun to live a “normal” life again. I too find it hard to believe I will not have to live this way forever with just one surgery.

  24. Hazel,
    I hope you have returned home safely. I am sure you are glad to know what is wrong but probably a little confused too. I am not aware of an aneurism located in the pancreas or digestive tract. I am assuming it is in a blood vessel located in the pancreas? Would this aneurism act like an insulinoma and cause low blood sugar? I do hope you are able to get this taken care of. I know it has been a long haul for you and you deserve to get the right treatment so you can get better and get on with your life. Please keep us updated as to how you are doing. I look forward to hearing good news from you soon.
    Tatia

  25. I found this website and feel like there might be some others who understand. I decided to write to the Mayo clinic directly. Has anyone heard of symptoms similar to mine following gastric bypass?

    I am an intelligent professional and am becoming increasingly frustrated with my daily life, particularly my symptoms related to mental confusion, mood swings, weakness, and very low blood glucose (low of 32).

    Here is a brief synopsis of my problem:

    I have struggled with my weight all of my life. In my teens and twenties I have unexplained absence of menses for approximately 10 years. Starting in my teenage years I began to suffer from low level depression. In my twenties I suspect I started to develop mild hypoglycemia (headaches, lows in the afternoon, daytime sleepiness, shakiness, followed by relief of eating something sweet). I went on every diet imaginable. I had the most success on a low simple carbohydrate diet with frequent small meals.

    In my 30s I began to have huge shifts in mood, sometimes on a day to day basis. I was seen by a pschiatrist, placed on antidepressants and lithium, which caused me to gain weight (250 to over 300). At age 35 I found out my birthmother (I was adopted at birth) died of ovarian cancer. An ultrasound was done due to my weight (approx. 280 at the time). It was discovered I had a large ovarian mass which was possible malignant. It was not malignant but I agreed to total hysterectomy due to family history. My maternal side has no significant history for endocrine disorders but I don’t know who my bio father is.

    In July 2004 I elected to have gastric bypass (RNY). I began to lose weight rapidly but almost immediately developed periods of faintness. This was attributed at first to low blood pressure. My blood pressure medication was reduced and the problems subsided somewhat. My highest weight was 307. On my surgery date I weighed 277. I lost down to a low 199 in one year, which is where I plateaud. After about 6 months I began to develop severe hypoglycemic episodes. This was confirmed when a colleague I work with did my blood glucose and it was 40. I also bought a glucometer and documented a few incidents myself. Usually these episodes are following breakfast or in the middle of the night, usually induced by exercise, excitement, or nervousness (such as before an important meeting). I was able to control them most of the time through lifestlye/dietary changes, but lately the episodes are increasingly uncontrollable.

    At first I experience a rapid heartbeat, sweaty palms, a feeling of impending doom, and weakness. Then it is followed by shakiness, a feeling that I’m going to faint, mental confusion, blurry vision, slurred speech, and one time I fainted. I eat something sweet, usually juice or candy, then I am extremely ravenous, usually eating a peanut butter sandwich. In the most severe cases (5 or 6 times in three years), I have fallen into a deep sleep for a couple of hours following the episode. Seizure is a possibility as I have lost my memory in these episodes.

    My psychiatric symptoms have increased following the bypass. This doesn’t make sense as I feel so much better except for my blood sugar regulation. But I have experienced increasing problems with memory, concentration (I’ve started taking Concerta), insomnia, depression, and moodiness. Four weeks ago I had a very severe blood sugar attack. I came close to losing consiousness. I didn’t have a glucometer with me but I was dizzy, disoriented, had slurred speech, couln’t walk, and blurry vision. I drank juice and ate a donut. I slept in my car for a couple of hours and the rest of the day was very weak and shaky.

    The following week I experienced some major family problems and ended up being hospitalized for depression for six days. On my last day in the hospital, I had a hypoglycemic attack following a Raisin bran breakfast. I experienced all of the above symptoms. All of the staff were at a staff meeting except for a nursing assistant. I convinced her to take my Blood glucose. It was 32. My BP was 90/40. She gave me juice, peanut butter and crackers and I slept for three hours. When I woke my BG was 95. I was released that day and told to see my PCP.

    I called the gastric bypass center. They said I needed to see an endo asap or go to the E.R. I couldn’t get in to see anyone without a referral and I couldn’t get in to see my Pcp until today. I went to the ER and they did nothing except tell me to see a local doctor. I went to see him. He had me come in yesterday after a night of fasting and fast all day until 2:30 p.m. My glucose level maintained itself (77-99). He did some bloodwork and said he’d call me today. I asked if a 72 hour fast was indicated. He said no. He hasn’t called me.

    I went to my PCP today who is referring me to our state university endocrinologists. The earliest appointment is January 2nd. I showed him a couple of articles regarding NIPS and insulinoma. He agreed it’s probaly my problem but wouldn’t agree to a direct referral to the Mayo Clinic.

    My attention/blood glucose problems have caused me the following problems:

    I have forgotten speaking with colleagues, my boss, etc.
    I’ve almost been in several car accidents.
    I have a hard time reading, completing paperwork.
    I go back and forth from being hyper to sleepy.
    I have a hard time sitting still.

    I have been off work for several weeks and I’m supposed to go back on Monday. Although I want to, I’m afraid my condition is interfering with my ability to perform my job. I’m afraid to be alone. I’m afraid to drive. I’m afraid to be without food and glucose tablets.

    Also, I am constantly hungry. I have gained over 30 pounds in the last six months. I maintained from 200-205 for a couple years. Recently I hit 248. I have since lost about 10 pounds since trying really hard to watch my diet since last week.

    Has anyone experienced similar symptoms?

  26. Hazel, Wow, I can’t imagine how you are feeling right now… Does this aneurism have anything to do with how you’ve been feeling all these years? And if not, then what explains that? I assume you only saw the surgeon so he probably couldn’t answer those questions. I suppose if a tumor was at fault all those years then it would’ve grown big enough to see by now for sure. I don’t understand aneurisms, but do you know how long it’s been there? I know it’s not much consolation after making the trip and hoping to go home healed, but if they hadn’t thought it was a tumor and you hadn’t come here, you may not have been diagnosed before it ruptured! Maybe that is the case with finding your thyroid cancer as well?
    My neighbor who had the thyroid cancer offered to drive me to LA to see you. I wish I could’ve made it. I’m sorry I have so many questions. I’m sure you have a lot to think about right now…I have to say, for being through so much you have an incredible attitude. Keep the faith. I will continue to hold you up in prayer.
    Peggy

  27. Hi

    Well I’m heading back to New Zealand without having had surgery. After having the CT on Monday I had an abdominal ultrasound which showed that the shadow they had thought was a tumour was in fact an aneurism. This is something quite dangerous as it is on my artery going to my intestine and could rupture. I need a vascular surgeon to operate on this so have to do this back in NZ as it would be extremely expensive to do in the US. They can possibly treat it with a less invasive method by going up an artery and I’m awaiting a call from Dr Parekh who was finding out if this was possible.
    I haven’t had any further tests for insulinoma as Dr Parekh said their CT was so good at finding tumours there was only a small chance I’d find anything by endoscopic ultrasound etc. As I’m not insured these tests would work out to be very costly.

    I’m pretty devastated by will be fine.

    Tatia

    I am so pleased you have found your tumour and I’m sure you’ll have more luck than me. All the best for your surgery which is not far away now. I hope it brings you back to great health.

    Hazel.

  28. Hazel,
    I am wondering if they did surgery as planned, or needed more tests. Let us all know soon as possible either way! Best wishes to you…
    Angelique,
    how are you feeling, and did you get to see your doctor in Spain? Hopefully you are feeling better! Im sure you are so anxious to have your baby, as all woman are especially towards the final weeks, but being in pain makes it so much harder! Congratulations on expecting another girl! They are so much fun, ……… and expensive!!! Ha ha. Let us know how you are feeling.
    Laura,
    Has number 4 arrived? If not, any day now i guess??? best wishes to you as well?

  29. Hi there,

    I do hope this gets posted as I am logging on from another computer. Today I had the CT and met with Dr Parekh. He and his team were very friendly and reassuring. We planned to go ahead with surgery tomorrow and I got to the hospital to do the pre-admission tests but while I was there I got a call from Dr Parekh who reviewed my CT and was unsure if it shows a tumour or something else. He is going to wait and speak to his radiologist on Wednesday and will let me know what’s happening from there. If the radiologist says it looks like a tumour I’ll get surgery but if not I’ll need to do further tests at USC such as ultrasound. I am disappointed to be rescheduled by appreciate Dr Parekh’s caution.

    Many thanks for your support.
    Hazel.

  30. Hazel,

    I hope you have access to a computer! I am anxious to hear how the appointment went today….hopefully you are on for tomorrow. Let us know if you can, otherwise I just might have to find someone to drive to LA with me and see how you’re doing for myself! 🙂
    My prayers are with you.
    Peggy

  31. Hazel,
    i am thinking of you during this time…….and hoping the surgery is done on the date you are waiting, and that you will be better and healed after a short recovery time! Goodluck to you, and my heart and prayers are with you,
    Pamela

  32. Hazel,
    You do not know me, I am new to this blog. I posted my first blog right after you back at the beginning of October. I read that you had to postpone your surgery 4 times. The day has finally come for you to turn the corner and begin the recovery process. I am so excited for you. I will be thinking of you this week and wishing you a fast recovery. Since my first blog, they have found my insulinoma and I plan to have surgery in early December. You have waited a long time for this to happen and I know you will be on the up and up soon.
    Tatia

  33. Homa,

    So good to hear from you. I am sorry that you have to get your hernia fixed. Is it possible that that can be done laparascopically? I hope so.

    You have been through so much. I hope that you have a quiet year ahead to focus on healing and being a newlywed!

    Kim

  34. Hazel,

    I am so glad that you finally have a date set. The waiting is so hard! Especially once you know what the problem is and you just want to get it fixed!

    I’ll be thinking of you. You will be in good hands, that is the best part.

    Keep us posted!

    Kim

  35. Hi everyone,

    Well, this time our trip is going ahead and we fly to LA tomorrow. It’s a 12 hour flight but is direct so it’s really just overnight. We’ll arrive Sunday and I have a CT and a meeting with Dr Parekh scheduled for Monday. If my surgery is going ahead it will be at 7.30am Tuesday LA time, but it could be later in the week depending on whether or not Dr Parekh wants to do any further testing. They had mentioned this when booking past surgery dates so I’m half expecting to wait a few more days, but hoping I won’t!

    Nikky and Pamela
    Many thanks for the well wishes and so glad to hear you’re doing well.

    Angelique and Laura
    Congratulations on your pregnancies but sorry to hear you are in such pain Angelique. So encouraging to know pregnancy is possible after these tumours.

    Peggy, Janet, Kim, Angie
    Thank you so much for your well wishes.

    Homa
    So sorry to hear you have to have another surgery. You’ve had a truly awful time of it by the sounds of things but you have shown so much determination to get well. Best of luck with your upcoming surgery.

    Will keep you posted when I can.
    Hazel xx.

  36. Hi everyone
    I just wanted to let you guys know that I am probalby going to have another surgery soon. My hernia is back. I have not done anything that I was not supposed to do. I didn’t even lift a loundry basket for the first six month becuase of the catherdar. I am going back to MD Anderson to see the plastic surgeon who did my incisional hernia repair last january. after going through all I have gone through, hernia repair should be nothing, but I am tired of having surgeries. I was just starting to get my flat tommy back and it is petruding again. I will find out next week if and when I will have the surgery. wish me luck

    Angie
    it is so good hearing from you. Our girl angie here is the one that started it all in here but posting her comment and sharing her experience, and for that I thank you. I am glad to hear that you are doing well. Thanks for sharing about how you still have ocasional pain here and there. I don’t get it that much, but sometimes just start hurting out of no where and then it goes away. I wish I could start excercising, but I am not supposed to work out right now. Keep in touch and stay in touch
    love xxx
    Angelique:
    I am sorry to hear that you are hurting. It will be worht it though to have your beautiful baby. Thank you for telling me about how you are dealing wiht not haivng much of a pancreas. You mentioned that sometimes you take enzymes. That is good that you don’t have to take it all the time. I have to take it even when I eat a snack. In the last nine month since my surgery, i only forgot to take it one time and I had indian food, needless to say that I paid for it, but it is not that bad though. Good luck with your pregnancy and keep us posted as to the arrival of the little one

    Pamela
    Thank you for your sweet responce. I am glad to hear that you are doing well. We start really appreciating our health when we go through something, don’t we. Thanks for telling me about your mom. I know being diabetic is not the end of the world, but it sure takes some adjustment. I am not sure if it is better than insulinoma but at least I don’t have to worry if I would wake up in the morning or not. Good to hear from you and stay in touch
    tatia
    Finding a big medical cneter with a doctor that is experienced is the most important thing. It would even be better if your doctor has removed insulinomas. I did my surgery at MD Anderson and I would strongly recomend it. I have been though a lot and have gone to so many hospitals for this and other health problems, but i have never been to a nicer place than MD Anderson. they are wonderful caring special people.Becuase it is a hospital that deals with cancer, they are experienced in dealing with tumors and they are sooo compationate. The doctor that did my surgery is Dr. Douglas Evens. He does a dozen of insulinoma surgeries every year. Lauren, has also done here surgery with Dr. Evens.
    Goding to a hospital in another state is not easy, I live in North carolian and I cna’t tell you how many times I had to travel to Houston last year, but it is so worth it. The problem with insulinoma is that it is so small that even if they find it with the imaging tests, it may still be hard to find once they get in there. So all the more reason that you want someone who has lots of experience in performing this type of operation. If you decide on MD Anderson, let me know. I will be glad to help in any way I can.
    Best of luck to everyone
    Homa

  37. Laura,

    Not long to go now. I wish I were 37 weeks. I’m only 32 weeks but last night the pain was so bad, I wanted the baby out and lots of gas & air. Are you having lots of pain around your scar area? I had most of my pancreas removed and apparently I have staples from my left abdo to behind my left breast towards the back. That is where I get my pain. I hope you have a good labour and hope it all goes really quickly. Let us know when you had the baby.

    Pamela,
    I am having another girl. I already have a three year old girl called Aimee. Can’t wait to see this baby, and hopefully the pain will be gone after the birth. The professor who did my op 5 years ago will see me in two weeks time, but I have to travel to Spain which is a four hour train ride. I hope I don’t go into labour there!!! That would mean delivering the baby in a foreign country as Gibraltar is a British colony even though we live beside Spain.

  38. Okay here i am! im back!
    To Laura and angelique, congratulations on your pregnancies!!Do you all know what you are having? Its good to know a normal pregnancy is possible after having an insulinoma removed.
    Nicky, i am so glad you are coming along with your recovery. You are not to far behind me with your surgery. Like you said it is weird when your stomach growels! Before my tumor came out i had become to hate food! I dreaded every piece of food i had to put into my mouth because i was so full and so tired of eating when i was not hungary! Now i love food it all tastes so good! Breakfast, lunch, dinner…… snacks..and even an occational glass of wine, which i could not have had before!
    Tatia and Kathy
    I am so glad you have been diagnosed and are on the right road to being healed. It is such a journey, but you all finding this web-site and getting the help and advice from all that stuck by writing to this blog will be more than comforting and feel less so alone!
    To: Janet,Peggy. Susie, Penny, Laura, Angie, Kim, and Gayle….
    Without this wonderful dedicated helpful group, i dont know how i would have got the support and much needed advise and help that i did! I hope that all of you are living happy and healthy!
    my thoughts are with you all always!! Thank you too!!!
    Homa i forgot to ask you what is an incisional hernia is?

    prayers to everyone!
    Pamela

  39. Hello everyone and newcomers!
    i am going to try writing this again… for the third time in a week! I have had horrible luck trying to submit my blog, and so each time have to start over! It seems as though i disappeared , but i just have been so busy with my first daughter starting school, and all the activities my girls are in, me and my family moving from one house to another…… but one thing is for sure, i would have never been able to do all of this if i would have still had my insulinoma! I have so much energy now.
    There is so much i want to say to everyone! I have missed out on so many conversations! so i will have to jump back in and not get so behind!
    To Homa: WOW! i cannot believe all that you have been through! I know several of you have had these similar experiences, and reading of Homas battle just makes me feel as though i went to the hospital for a hangnail! I hope your recovery is coming along, and each day that passes is a little easier than the last. My mom was diagnosed with type 1 diabetes type 1 shortly after i was born 36 years ago. She is still running strong!! Although living with diabetes is challenging and sometimes difficult, i am sure everyday you will improve more and more, and you will become to understand your body and its needs with diabetes, then things will become more routine and easier for you! I was so happy to hear you were married in june. Congratulations on that homa! Stay strong!
    Hazel,
    Darn those doctors! Lets get that thing out! I am praying that the 28th is your magical day! Then there after some recovering you will be healthy and ready for christmas, and the new year, and your new life! we will be waiting for you to cross the road to health.
    I have more that i want to write but i am going to try and submit this part before is disappears!…….then i will come back!!!
    Pamela

  41. Tatia-I think the most import thing is to as the surgeon how many times he has operated on the pancreas. Does he do any other types of surgery or only the pancreas? How comfortable is he with the whipple? (The whipple is the most complicated surgery of the pancreas so technically if they are experienced with that procedure, the others should only be easier) On the flip side, I told my doctor he should put on his resume how many whipples he has not had to do which other doctors would have done. I know Dr. Cameron at Hopkins has done more whipples than anyone, but could any of those been enuculations? there is no easy answer here. You have to be very comfortable with the person is the key. You do not want a general surgeon, you want someone who only does pancreas. Good luck!

  42. Hello everyone,
    Thank you so much for your responses Gayle, Angie and now Laura. I would love to hear how you picked your surgeon and where to have your procedure done. I am looking at a surgeon from Washington University in St. Louis, MD Anderson and John Hopkins. Wash U is the closest to my home and they actually found the tumor. How do I know if the surgeon is experienced in this type of surgery? If they have done many whipple procedures are they qualified to do a distal pancreandectomy or removal of the insulinoma? Or do they need to be well experienced in removing all types of tumors, insulinomas from the head, body and tail of the pancreas. I really have many questions but am worried I will not ask the right questions. I know it is best to go to a large center in the country that does this, which ones are the best? Any input anyone has would be really helpful and greatly appreciated. Hope everyone is doing well either recovering or getting prepared for surgery or staying on top of trying to get a diagnosis.
    Tatia

  43. Kathy DL- I have not read anything anywhere about what causes these awful tumors, but I am led to believe it is not lifestyle by my doctors.

    Tatia- Dr. Matthews at the University of Chicago is fabulous. It really does matter what hospital you go to to get a good diagnosis. I first went to Northwestern and their MRI was too blurry to find anything and I thought they were a good hospital! As far as having it “cut out” vs and enuculeation (sp), enucleation just means removing the tumor vs removing the pancreas or part of it. As far as recovery and pain levels are concerned, you definately want the enucleation, but it won’t be your choice, your surgeon will determine what needs to be done. One thing I cannot stress enough is you need a surgeon who has done a lot of these. It is a very complicated surgery and since they are so rare, it is hard to find doctors who are experienced. For my surgery, the staff could not say enough good things about the skill of Dr. Matthews, they said anyone else most likely would have done the whipple…..

  44. Angelique–> I wish I was done! I am 37 weeks so 2 more weeks to go! I have not had any strangeness with this pregnancy. It is however the best information I have gotten on my self diagnosis as to when I got this tumor. For my first 3 pregnancies, my glucose test came back in the low 70’s which is very low for that test but not off the chart. For this pregnancy, I was 120 which is much more normal. Strange thing is, I did not start noticing symptoms until after my second pregnancy, so I am still not quite sure when it developed….

  45. Hi everyone! I am now 32 weeks pregnant and going through a lot of pain upper back/left shoulder blade where my pancreas used to be. Cannot sleep at night now. I wonder how Laura is doing? She must have had the baby by now.

    Welcome Kathy and Tatia and all new readers out there. Tatia, the good thing about your diagnosis is that they know exactly where it is and it makes surgery so much easier.

    Hazel, I am keeping my fingers crossed for you planned surgery. Hope all goes well. Love to all xxx

  46. HI to everyone

    Ive been reading all the posts that come in but as its been soo long since ive posted I didnt have the time needed to catch up!

    Homa – glad to hear you are doing well, sorry i didnt get back to you when you posted – you have really been through it but sounds like you are getting there at last. Glad your wedding went well you definitely deserve it!

    Its the things they dont tell you as you said, I think its cos we’d panic and not go through with the surgery. I thought diabetes would be worse to control but I suppose they think they can control it better than the insulinoma as its so unpredictable!

    I was very very lucky not to have had to have that extensive surgery!

    Im fine, still swimming every day and doing yoga now to strengthen my abdomen which is still fairly weak after all this time. I have twinges where my gall bladder was and unknown aches and pains from my insides. Doctor doesnt seem to think its anything to worry about so Im not!

    So many times I think – “i couldnt have done that” or “I would have had to eat by now” its weird how you recover and life is so different! Keep well and lots loveX

    Hazel – So sorry to hear your surgery has been postponed again – at least the longer you wait the stronger you will be after your thyroid op! Not really any comfort tho!! Hope to hear it all goes off on the 28th! Good luck and thinking of you!

    Kathy – Insulinoma is luck of the draw I think. If you have rogue cells and they multiply in the wrong place you end up with a tumor – you can have insulinoma tumors in other places in your body which is why they often test the whole body for insulin secreting cells. (calcium infusion test) Sometimes these can be causing the high insulin problems and are not detected because they are in other parts of the body not where they are generally looked for in the pancreas. (does that make sense??)

    Nicky – gall bladder problems oh yes – but I didnt know they had taken mine till 6 weeks later – then it all fell into place – why I had pain and digestion problems. Its all settled down but certain meals do give me problems – nothing serious just “oh yea upset stomach no gall bladder!! whoops – must remember not to eat too much chinese!” Thats without having a whipple!

    Peggy – glad its all over at last and your are doing really well!

    Tatia – an enucleation of the insulinoma is having it cut out! Its the way the tumor grows inside a sort of cover which they can then slip it out of – i believe. There is no alternative surgery than having it removed. Its what they have to take away with it that makes each surgery different. Because my tumor was very close to a blood vessel and an enzyme tract, they were not sure if they could just remove it or if they would have to take away part of the pancreas and have to do a whipple. It depends where it is as well.

    You need to talk to your surgeon and ask everything you can think of – even if its silly to you. Ive given this advice before – make sure your surgeon explains everything so you know what he aims to do. Good luck – there is always someone on here that can answer your questions and worries. Most of us have been through this recently and want to help.

    Socel Saycon – So sorry to read your problems, I hope you are able to get your mother the operation. Insulinoma can be treated with tablets but as most of us who have been on them know they are not very reliable although they help. You need to get her treated some way as she will not get better on her own. I wish you good luck.

    I keep missing posts but catch up eventually, wish everyone good health and good luck. X

    Angie

    Yes where is John?

  47. Gayle,
    Thank you for your response! I have been hearing about the University of Iowa. I think there were other people on this blog that have had their procedures done there as well. Since writing a couple of weeks ago, my insulinoma has been found! I am greatly relieved and ready to move forward. I went to have another upper endoscopic ultrasound done at Washington University or Barnes Jewish Hospital. It is 11-12mm, about a 1/2 ” in size. I am meeting with a surgeon there next week to discuss the options. The insulinoma is in the body, close to the tail by the pancreactic duct. I have not spoken to a surgeon yet but am leaning toward having it cut out as apposed to enucleation. Gayle I would love for you to share your experience and your doctors and surgeons if you don’t mind. I understand if you do not want to give names though. I find all of the info I have found so far as been on this blog and I can’t tell you how helpful you have all been. I hope you are doing wonderful and have a new zest for life! Thank you again for your response.
    Tatia

  48. Tatia
    I am also from the midwest. My insulinoma was found at the University of Iowa Hospitals. My laparoscopic surgery to remove the insulinoma was done in July of 2007. Great place. I know the Mayo Clinic in Rochester would also be a great place to go. Good luck.

  49. Hi People!

    Sorry to hear Hazel that your surgery has been postponed again, you must be getting pretty restless waiting for the date. I hope and pray that October 28th will see you get your surgery completed so that you can get on with the rest of your life; you must feel as though yourlife is on hold rigth now, just try to stay focused and hang on in there, it will soon come. Hopefully by Christmas you should be all done and dusted! Keep the faith!!
    Nicky, thanks for your update. Its great to get such comprehensive feedback on your surery/condition. Your surgeon sound pretty cool! Glad you are doing well.
    Love to all.
    Janet x

  50. Hi everyone,I’m back again,sorry it’s taken so long to get back to you.
    Thanks for all your good wishes they’re really appreciated,talking to you all is like having another global family with a special connection that not many people know about.
    Well I’m now 9 weeks post op, I can’t really believe that because it seems a million years ago to me now. I had a nasty case of flu a week after I got home which I could have done without,the coughing made me feel like my tummy was going to burst.I also had to take a course of antibiotics which gave me awful diarrhoea.In fact the first 5 weeks was pretty much diarrhoea but it settled thank goodness.I also had a blood test done to see how I was going and I had extremely low iron.I was getting dizzy and tired after only waling for an hour and I thought for a second that my hypos were back but after a couple of weeks on iron supplements I started to feel much better.
    Actually it was quite funny because about 2 weeks after I got home I was talking to my husband when my tummy grumbled and I suddenly realised that I was feeling hunger. I don’t know about you guys but I hadn’t felt hungry in almost 3 years,I think I’d forgotten the sensation so I had a little chuckle,You normally ate before you got a chance to be hungry.
    Having no gall bladder has been interesting,I have to work out what sits well and what dosen’t and cucumber and cola drinks definitely don’t.My tummy gets distended and very sore but so far most other things are good.
    I’m feeling so good now, the swelling is going down over my tummy although I have a beauty of a scar but I can live with it ,it reminds me of the second chance I’ve been given.I get out more and walk more but I still have trouble with a full shopping trolly and to top it off I’ve already lost almost 10kilograms.

    Hazel it seems your not having much luck with a surgery date ,I had mentioned this forum to my surgeon when I was in hospital and he said he’d be happy to help anyone so if you want contact details let me know.The sooner we get you well the better. I also had a relative who had thyroid cancer quite young but you can hardly notice she has a scar. I’m sure everything will fall into place for you and by Christmas you’ll be a new woman and what a great New Year you’ll have,hold onto that thought and best wishes to you.

    I will be sure to keep in touch so good luck to all those awaiting treatments and tests and take care till next time
    xxxNicky

  51. Hello,
    It is great to finally find other people who in a similar situation as myself. I am 35 years old and have been suffering symptoms of an insulinoma for almost a year. Over the past 3 months I have undergone several tests to try to find the insulinoma but have not been successful in locating it. I just had an upper endoscopy last week in which nothing was found. I am meeting tomorrow to see about doing the pancreas stimulating test. My biggest problem is not finding anyone in my city that is able to help me. I live in the midwest and have found several hospitals over the internet that on both the East and West cost that might be able to help. Does anyone have any info on where to go for a diagnosis and the equipment to which could help find the insulinoma? Until someone finds this I am not able to get anywhere. I need to go somewhere that knows what they are doing are able to find a hiding insulinoma. I would appreciate any help anyone has for me.
    Thanks
    Tatia

  52. Hello everyone. I am new to this but have been reading your messages for a few weeks and seem almost addicted to all your postings. I am so glad to find you. What amazing people you all are. I have been going through the typical symptoms that I have read so many of you have since at least Dec 2007 and have had enough of it. Those of you who have suffered for years & years, my heart goes out to you. You are all such strong people! Recently i was told by a specialist in Phiadelphia ( I am from New Jersey) that he suspects Insulinoma. 72 hour testing is scheduled. What I can’t seem to find anywhere is what causes this? Is it from something that I may have done for me to develop the Insulinoma? All I have heard from people is “do you smoke?”. Not the case with me and I’m sure the dogs, cats & ferretts that keep popping up when i try to search the web never smoked as well. If anyone could help me with what causes Insulinoma, I would greatly appreciate it in laymans terms as my ” brain fog” and confusion sometimes gets the best of me ( which tears me apart, as I was in the 150 IQ club in my younger years). Thank you in advance for any information you could share with me. God Bless you all. –Kathy DL
    PS: Where did Dr Jon Mikel ever go? I haven’t read anything from him dated currently.

  53. Hi there,

    Well my surgery has been rescheduled yet again. This is due to the surgeon planning to be out of town when I was due to have my surgery on October 14th. I am now booked for surgery on October 28th which is about four weeks away. This is my fourth surgery date and I’m hoping this one will not be changed as it feels a bit like each time I get close to my goal, someone shifts the goal posts! My dream is to feel better by Christmas so hopefully I’m still on track for that.

    Hope everyone is doing well.

    Hazel.

  54. Hi Peggy,

    I was all ready to fly to LA on Sunday 7th to have surgery this week, but on Thursday USC called to reschedule as Dr Parekh was going to be out of town for most of September. It is a lot of re-organising each time my surgery is moved but I’m hoping third time’s a charm!

    I am very keen to get this tumour taken out but will try and be a ‘patient patient’ for the next five weeks. The anesthetists at USC were fine about doing my surgery this week seeing as it is four weeks since my thyroid surgery which is apparently the minimum time to allow between surgeries. I have to say I appreciate your assurances that I’m going to see the experts!

    I do hope you are continuing to do well.

    Janet

    Thank you for your love and support.

    Pamela

    How are you getting on? Are you still improving? I hope the surgery, the weight loss and the exercise are all helping you get back to being fighting fit!

    Hazel.

  55. Hazel,

    I’m glad you’re feeling recovered, I’m sure you are anxious to have your tumor removed. So was the surgery rescheduled just recently? Is there a reason for that, or are they just giving you more time to heal? I imagine having another surgery so close will be hard on your body..but you will be in competent hands.

    Nicky, isn’t it wonderful to be “hypo free”?!!

  56. Hello everybody.

    Nicky and Hazel,

    Glad to hear that you are both recovering from your surgeries and thanks Nicky for such a comprehensive post about your surgery, really pleased you have done so well Haxel. glad your thyroid surgery is now well behind you, and your scar is all part of you and as time goes by should fade quite a lot. Glad to hear you have a reschedule date for mid October, the time will soon go and you will be able to look forward to getting your life back on the track you are striving for. Keep being strong which I know you will. Love and prayers.

    Janet

  57. Hi everyone,

    I’m pretty well fully recovered from my thyroid surgery and am almost back to doing everything I was doing before. I’m getting a few strange looks as my neck scar is so visible and so new but it’s not that big and I can see it’s going to heal well. Hopefully all of that is behind me now!

    As for my tumour, if all was going to plan I’d have arrived in LA today and would be meeting the surgeon at USC tomorrow. However, I’ve been rescheduled to have surgery around Oct 14th so will be going in about five weeks from now. I still need to get confirmation of this date but right now that is what I’m working towards.

    Nicky

    How are you feeling now? I do hope your recovery is going well. I was so very pleased to read that you have kept so much of your pancreas. It really sounds like you had surgeons with great experience operating on you. All the best to you.

    Hazel.

  58. Hello everyone I’m back! My surgery was on the 5th August and was a success.
    Obviously the powers that be were keeping an eye on me because the team that worked on me were outstanding.I had an appointment with the surgeon Prof. Andrew Biankin at Bankstown/Lidcombe Hospital Medical Centre Sydney,on the morning before the surgery.This was the first time I had met him,we had previously spoken by phone.We discussed what the scans had shown and he drew us some images of what he’d planned to remove.I already knew that a whipple was planned and he told me that unless he was surprised at what he saw when they opened me up that I shouldn’t expect anything less.
    Prof.Biankin has an affiliation with the Cancer Council Australia and has a dedicated team of surgeons that specialise in pancreatic cancer surgery. So given this information I had to leave myself in his capable hands and pray for the best.
    On the morning of the surgery I’d be lying if I said I wasn’t scared,I didn’t know if when I woke that I would be diabetic and what my quality of life was going to be like so the nerves did get the better of me for a time.By the time I was being wheeled off to be prepped I had regained my composure and focussed on my recovery and thought about my wonderful husband an beautiful girls.
    I had an epidural put in to help with pain and was ready to rock an roll.Next thing I remember was asking someone for help but I don’t really remember the pain,apparently the eppidural wasn’t working when I awoke and it took a half hour or so to fix. Then I was in ICU. Ideveloped an intollerance to the octreotide injections they gave me every 6 hours to help with the healing and was violently ill but we soon figured out a regime of anti nausea meds to go with it and it was bareable.I spent the first 4 days in ICU and was then tranfered to surgical ward for a further 7.
    When I became alert in Icu I could hear my husband say “it’s 5 o’clock” and my relief was indescribable, I was expecting a longer op. for a full whipple and it had only been around 5-6hrs so I was sure I would be OK.As it turned out the tumour was 10mm and in the lower head of the pancreas.The took my gallbladder and put a balloon down the duct to see how close to the pancreatic duct the tumour lay.There was enough room to safely excise the tumour so they did. The hole was too large though to stitch back up so a piece of bowel further down than the duodenum was grafted up to cover the hole and the plumbing was rewired a bit so I had a partial whipple leaving my stomach intact.I have up to 85% of the pancreas intact and have no diabetes.
    I have had a bit of diarrhoea and wind but now 2 weeks later can eat small meals without too much hassel.I’m still figuring out the fat/oil issues.I’ve lost 7 kilos from my 19 I gained which is encouraging.The wound looks a bit like the Sydney harbour bridge following the line of the bottom of my ribs and isn’t anymore painful at this point then when I had my c-sections, I’m only taking paracetemol for pain. I am truly lucky and grateful to my team for giving me my life back.I’d forgotten how it felt to be hypo free.If anyone in the Southern hemesphere needs a referal to my doctors don’t hesitate to ask for details they really were the best.
    Susie
    Thanks for the info it was very helpful I’m sure my eating habits will have to change just not as drastically as yourself,best wishes to you.
    Hazel
    Goodluck with your up coming surgery,it’s a pity you have to travel so far but it will be worth it.
    Sorry this was so long but I wanted to give details and let you all know I’m well.
    Nicky

  60. Homa,
    Hi there. Thanks for your loving reply. My first operarion was in 1974 whenI was 17 tears old at Dudley Road Hospital in Birmingham UK, the surgeon was Professor Bevan. I had an insulinoma and half of my pancreas, my spleen and appendix removed. I had a recurrent insulinoma in 1995, and have been seen by several endrocrinolgists since then, and a surgeon, Mr Da Silva. An further operation was recomended by the endro but when I saw the surgeon he advised that because of the previous surgery he had serious concerns. I have had other opinions and decided to be treated by medication for as long as possible. I take a lot of diazoxide, 650 mg per day. Thanks for your encorougement it is very much appreciated. am very blessed as despite my problems I had a baby in 1985, before the second insulinoma.

    Laura,
    Congratulations on your pregnancy and Laura too. I had my son 11 years after partial pancrectomy, spenectomy and appendectomy. My pregnancy was really ok, I only had the usual preganancy pains. However, following surgery for about 10 years I occasionally had days when I had horrendous abdominal pain that was only relieved by going to bed and actually sleeping. This was no worse during pregnancy. Very very very occasionally I still get these pains but not quite so severe, it is a small cross to bear and I am so blessed to have a healthy son, as durin prenancy I had been advised by medic to have a termination because of the medication I was taking. My prayers are with you and everyone.

    LOve Janet xx

  61. Angelique, I am also pregnant, fun huh? I had my surgery last summer August 2007 and I got pregnant in Feb 2008 so I am about 28 weeks. I have not had any strange pains, but I did discover that I have a hernia at my incision which means I have a huge bump right in the middle of my belly, very attractive. Of course, they can’t fix it till after the baby comes so I am sure it will continue to get more and more attractive. the only thing I was experiencing was the constipation, but I have been eating a ton of salads and prunes and now that is pretty under control. I have to tell you, I have been pregnant with the tumor before 3 times (this is my fourth baby), and for once, I am really looking forward to nursing. In the past, it was nursing that really triggered the hypoglycemia for me. The first time I ever had any symptoms was when I started nursing my second child and the symptoms always went away when I got pregnant again until the last time. Good luck!

    Laura

  62. Hi everyone!

    Homa, its nice to hear from you again. I read all of everyone’s mail but never seem to have time to reply. I had a partial – well, neck, body and tail removed as well as my spleen and I do take creons (enzymes) when I eat a big meal.

    Question, has anyone been pregnant after surgery? I am almost 6 months and get a really bad pain on my upper left side towards the back. Also, I am always very constipated. Anyone out there with this experience?

    xxx Angelique xxx

  63. Dear Janet
    thank you so very much for your sweet and touching responce. you are too kind. Sounds like you have been through a lot too. I can’t imagine going through all that you have been through and having the insulinoma coming back again, bless your heart. I have not been able to go through all the comments here, so if you don’t mind telling me. when did you have your first operation and insulinoma removed, when did you discover about the second insulinoma? what are they planning on doing about it? what hospital did you have your surgery done? My experience has thought me that going to the best hospital is the most important thing one can do. God knows it is a hassel to travel. I got so sick of flying to Houston every month. not to mention the expense of travel and all that good stuff. but in the end it was so worth it. I hope you don’t have to have another operation, but even if you do, it is not the end of the world. It would be hard and long recovery but it will pass. There is something positive in everything. during those dark days that I was recovering, I kept telling myself, at least it is not cancer.
    I will keep you in my prayers. and stay strong and god bless you
    love homa

  64. Hi Homa!
    And I thought I had had a bad time!! I too had my spleen removed when I had half of my pancreas removed with myfirst insulinoma. Still have the other half but have another insulinoma which I am taking diazoxide long term. However, I can imagine that going from one end of the spectrum to h other must be horrendous. I was told that if I have this second insulinoma removed I would have to have total pancrectomy and since I have already had pancreas op things would be quite complicated. You sound like you have really been through it. You are so so brave and I am honestly in awe of you, as I fear another operation as I had such a bad time.
    Its great that you are trying to be postivive, its the only way forward and I admire you so much. God bless you and your brave outlook.

    Love Janet xx

  65. Dear Kim
    So good to hear from you and thank you for the sweet responce. it means a lot. My doctor didn’t know why my spleen was enlarged. he told me about it the day before surgery. I was going through information overload at the time, just to digest the fact that I was going to have pancreatectomy. so having the spleen removed was the least of my worries. yes I have been through a lot, but I managed to overcome it. whatever doens’t kill you makes you stronger, right, smile. It was difficulty coming to terms with diabetes. my poor little body went from having too much insulin to having none. I have always been horrified of needles, and suddenly I had to give myself insulin injections four times a day. that was the hardest part I went though the stages of adjustment, getting upset, angry, depressed. I have come to accept it now. My husband is diabetic, so he understood what I was going through. His love and support and guidance made the world of difference. I did have to learn a lot about what to eat and what to do. I was blessed to have worked with people who are diabetic, so i had a good head start on it. It was just overwhelming in the hospital, with all this people coming to see you to teach you things. I wanted to say, leave me alonnee. I just went on insulin pomp last week. it is the greatest thing. no more injections. I am loving it. It is the latest pump so there is no tubing attached to me. the wedding was wonderful. it was not just the celebration of our union. It was a celebration of overcoming all the things that we had gone though for the last six month. I have lost so much wight, my dress actually looked good on me, if I say so myself. lol. that was the best part.
    How are you doing? I bet it is nice to go back to a normal routine
    keep in touch and take care
    love
    homa

    dear susie.
    I didn’t know I was going to have the wipple until the day before surgery. in a way it is good that I didn’t know, didn’t have it looming over my head and didn’t have to worry about it until right before surgery. that is good that you don’t have to take creon, the enzyme to help digest the food. I have been very lucky in regards to not having too many indigestions and upset stomachs. I did have it after surgery though, oh boy did I ever. the smell of food did bother me, and food had no taste. I have just started to get my appetite back after almost seven month. Are you still loosing weight? I guess this is a question for everyone who had surgery. for how long did you guys keep loosing weight? I think mine is starting to level off. I have not been able to buy clothes since surgery because I keep shedding the extra weight. I could be in one of those weight loss comertials like before and after. I had a bulging stomach because of the hernia. I looked like I was four month pregnent. My belly looks really good right now though. I am taking nexium probably have to take it indefinately. I am trying to look at things in the positive way. eating right and not eating much fat is something all of us need to do. in a way it is good that your body and mine doesn’t digest the fat, since it is not good for us anyways, right,
    take care
    Homa

  66. To Homa,
    Oh my G-d! You have really been through the wringer. I thought I had it bad. My surgeon always says to me we have been through the war together. My abdomen looks like a war zone.
    Having Diabetes is difficult but manageable.
    Millions of people have it and live very long lives, look at Mary Tyler Moore, she has Type 1 diabetes and is in her 70’s now. I didn’t know you were going to have a Whipple.
    Did food gross you out after having the surgery? Odors of food reallly bothered me especially garlic to this day. And I can’t eat like I used too. I’m on Prevacid for the rest of my life to handle the stomach acids. I’m glad you are doing better and on the road to recovery. Take care.
    Susie

  67. Dear Homa,

    So glad to hear from you at long last. I am relieved to hear that you’re OK but it sounds like you have had a very difficult time and I am so sorry to hear about that. I guess you will be in all the medical journals. Why did they think your spleen was enlarged and have to remove it? Have you been able to handle the diabetes? Was it hard to learn how? You are very courageous and have a tremendous attitude to be able to be thankful – you have been thrown quite a curveball. I am so glad to hear that you finally had your wedding! I’m sure it was lovely.

    Take care of yourself and keep in touch.

    Kim

  68. Hi Everyone
    It has been a very long time since I have posted a blog here. For those of you who remember me, my surgery was successful. For those of you who are new and do not know me, I had insulinoma for six years. I was diagnosed three years a go. I had an unsucessful exploratory surgery done in 2006. I went to MD Anderson Cancer Center in Houston and had my surgery on January 16th. I had an angigram done the week before the surgery. When I went to talk to my surgon the day before the surgery I found out that I had multiple tumors. He said that he probably had to do a total pancreatectomy. You can imagine my shock. He also said that my spleen was larger than it should be so he was going to remove it. I was also scheduled to have an incisional hernia repair operation done right after the operation for insulinoma. I developed the incisional hernia after my first operation. My surgery lasted 12 hours. I had a total pancreatectomy, spleenectomy, had my galbladder removed and of course part of the stomach and duodenom, I can’t remember how to spell that one. the pathology result showed that I had 22 tumors all over the pancreas. My doctor was only able to see seven or eight of them the rest were too small to see. Dr. Evens, my surgon said that there has only been two cases documented of multiple tumors like mine. He said this before the operation. I don’t even know that those documented cases had as many tumors as I did. As a result of surgery I became diabetic I was in the hospital for two weks. My recovery period was very long and not pleasant. As susie said it, no one tells you about thie nausea and vomiting that folows. I was on anti nausea medicine for three month after surgery. It was quite an adjustment mentally and physically to come to terms with becoming a diabetic. I went from one extream to another. talk about drastic change in the diat. what killed me was everyone saying, well, this is better than what you had. I don’t see it that way, I went from one bad illness to another. granted I have more control over this, but diabetes has more of long term effect on the body. I stayed home for six month. I was supposed to go to work after two month, but I developed comlocations. I had a bile leakage. I had a cathedar put in for 4 month. I went back and forth to MD Anderson five more time after surgery for the leakage. considering what a huge operation I had, some kind of complication was to be expected. it could have been worse. I did manage to have my big beautiful wedding finally in June. Susan you were right, I had to get my wedding dress ultered again. I lost a total of 40 pounds. I just went back to work and I have an insulin pump now. which is great. I am starting to accept things and be thankful. because it could have been worse. I thought about you gusy a lot. I wanted to put a post, but my computer crashed. I have adaptive software that makes the font bigger and I lost that and had to wait to get a new software. so I am just now able to write to you gusy. I don’t want anyone who have not had their surgery be afraid of getting what happened to me. insulinoma is rare and what I had was the rarest of the rare. I always get weird things happen to me.
    Peggy I am glad your surgery went well. How are youfeeling now.
    Susie
    I am curiouse about something. After having the wipple, do you have to take enzymes to help digest the food like I do. they really help in digesting the fatty food, even though I don’t eat too much fatty food.
    has anyone else in here became daibetic after surgery or anyone had pancreatectomy? I would love to hear about your experience. I still experience twinges of pain here and there.
    Lauren
    How are you doing? I thought of you everytime I went to Houston.
    Angie and Kim
    I hope you guys are doing great.
    nice to be back here agian
    Homa.

  69. Persephonie!
    What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow.

    Love to all on this forum.
    Janet xx

  70. Persephonie!
    What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow.

    Love to all on this forum.
    Janet xx

  71. To Nicky,
    This website is strange. I wrote a long email to you and hit the submit button and it never went through. I did have a whipple done, on Feb 15 of this year. Make sure your surgeon has done many of these. My surgeon has done the most Whipples in the U.S. Actually his speciality is repeat surgeries on the pancreas. Be prepared for a long recovery. Make sure you have someone to prepare your meals, watch the kids, clean your house. I couldn’t do anything for a very long time. You have to relearn to eat again. No more regular size portions. You will get very sick and throw-up if you eat too much. The nausea & vomiting, no one tells you about this is very unpleasant. I would wake up feeling fine and about noon time start feeling nausea the rest of the day. It does finally pass though. The biggest thing with this surgery is eating very small portions and cutting out foods that contain lots of fat. No fried foods, foods containing mayo, use low-fat or fat free versions, When I order Chinese food I ask for them to make it with no fat. The fat will give you horrible indigestion and dirrahea. If I wasn’t throwing up, I was having dirrahea.
    After 6 months my digestive system has calmed down. But I’ll never be able to eat like I used to before the surgery. When we go out to dinner I split an entree or I just eat off my husband and kids plates. My surgeons say I’ll live longer by eating less.
    Another side effect to this surgery is losing lots of weight. I have lost 40lbs. My insulinoma caused me to gain so much weight so the weight loss has been the one good thing coming out of this surgery and of course not having an insulinoma anymore.
    I’ll be honest with you, I have had 2 C-sections, a hysterectomy and the first pancreas operation, the whipple is by far the worse procedure for recovery. It is a big surgery and usually lasts about 7 hours.
    The doctors don’t tell you about the side effects to the surgery, I guess they don’t want to scare us.
    But now I’m swimming 3miles a week, walking and lifting light weights. I’m so trim, and feel great.
    Good luck with your surgery you’ll be fine. Let me know how it goes.
    Susie

  72. Peggy,

    Thanks for writing back. I thought my post was deleted. I am going to a new endocrinologist on August 29th per the advice of my gastroenterologist . I have had the appointment since May 12th. My stomach doctor insisted that I see him.
    Hopefully, I will have a better experience with this doctor he referred me to.
    It just took so long to get into him. Thank you for your info regarding the reliability of CT Scans, octreiotide scan, and endoscopy. My gastroenterologist shared that same info with me the last time I was in……that is why he really wants me to see the new specialist. I have heard that the 72 hour fast is usually what helps to confirm it.
    I am keeping my fingers crossed! If this post makes it through I will give you an update after my appointment on August 29th. Thanks again for taking the time to write back. I thought I was deleted. I promise I won’t send any more novel length posts:).

  74. Rachelle,

    Did you ever get your questions answered? I’m sorry I missed your post somehow.
    Your weight gain would be normal due to an insulinoma. Insulin causes you to store fat. My doctor said I was the only thin person he’d seen with the disease, and he’s successfully treated over 50 cases. I heard that the ocreotide was not the best test. I’ve also had two endoscopys and multiple CTs that didn’t show the tumor. But it was there all along! The 72 hour fast will help confirm the diagnosis..sugar levels are low when the insulin is high. But it takes the right equipment and the right radiologist to find the tumor!
    Good luck

  75. Persephonie,

    I’m glad you posted! We all jump in whenever…

    I know how it feels to have doctors suggest you’re mentally ill. It’s even worse to wonder yourself if you are. Not having control over your mind is the hardest thing I’ve experienced during this illness, other than not being able to relate the feelings to anyone. I’m not saying you have insulinoma, but I’ve experienced all the neurological and other symptoms you’ve described (except for the intestinal problems). I even went for a psyciatric evaluation. If some of your symptoms improve after you’ve had sugar, then don’t
    be afraid to suggest insulinoma to an endocrinologist! They are so much more aware of the disease now. The diagnosis is fairly simple. I had my first “72 hour fast” that everyone talks about in a doctors office! You could even go buy a blood sugar monitor and test yourself when you’re feeling low, that should give you some idea. So, how do you feel if you don’t eat before going to bed? It could be something else, but I would definitely see an endocrinologist first. I wouldn’t even waste time trying to convince your regular physisian, if you can still get the appt. If not, then demand to see one! Take it from someone who was discouraged for years. It was the encouragemnt from people on this site that pushed me to find the answer. It took me over 16 years and they finally found and removed the tumor 6 months ago! You have to get to the bottom of this. You do not want to go on feeling this way any longer. I stongly encourage you to make another appointment..today! You can think of what to say later. I know it’s scary, but there will be some answer, and we’re all here for you.
    I’ll be praying,
    Peggy

  76. To Nicky
    I’m sorry to hear you need another surgery. Make sure your surgeon has done many Whipples. My surgeon is world renowned and has done the most Whipples in the US.
    My surgery took 7 hours. My stay in the hospital was fine. But once I got home I was a real mess. Expect to lose lots of weight. I have lost 40lbs. You will never be able to eat like you used to. Expect lots of nausea and vomiting, burping and gas the first couple of months. I have to say after 6 months I am now swimming 1 mile 3 times a week and walking alot. My stomach has settled down and I can eat almost anything. However stay away from fried foods, regular mayo and anything with lots of oil or fat in it. You will get bad diarrhea and gas. I still have to be careful at what I eat, spicy foods bother me.

    You will not be able to do anything for weeks right after surgery. Make sure you have someone to take care of you, bring you your meals, take care of your kids and someone to clean the house. It is a long recovery. I ate alot of cream of wheat, toast and cereal while recovering.
    I have to take Prevacid for the rest of my life.
    If you have anymore questions don’t hesitate to ask.
    Good luck with everything.
    Susie

  77. to whom it may concern:

    I am from philippines and i am very hopeful that this site will help me in the big problem taht my mother is facing right now, she is diagnosed with her doctor wthat sha has this INSULINOMA, sinec it was really new to me and i never heard that kind of ilness in my whole life i hurriedly research it on the internet and i was very sad that its a tumor on her pancreas, we’ve been confined in the public hospital for 2 weekks and we cannot afford anymore to see her in bed, i feel so pitty and i love my mother so much because she is the kindest mother to us, please help me and my mother on how to overcome this big problem?will there be surgery on the tumor? but we dont have money for the operation.Is there any possibility that my mother will again live a normal life? please help us… anybody who could read this letter of mine, i really need your help.

  78. Hello!

    Hazel!! It was wonderful to see your message to hear that youare at home recovering. Great to hear the op went to plan and that are mobile and can eat and drink. Now you need to take each day as it comes and get plenty of rest. So glad you are up and around, my prayers remain with you.
    Love to all,

    Jant xx

  79. Hi there,

    I’m back at home and am doing just fine. My operation went well and I was only in hospital the one night. Now that I’m home and have had some sleep I feel a lot better and am able to eat and drink normally and move around without a problem. All I have is a stiffness in my neck and shoulders and a feeling of having a lump in my throat, other than that I’m slowly getting everything else back to normal. Just before I rest I wanted to let you all know I’m fine and I truly appreciate all the support, it is wonderful.

    Hazel xx.

  80. Hazel,
    Im praying for you too! Your on your way now to being healthy! Pray that you recover quick so that you can move forward! Everything is going to be great!! Please keep us posted! Love Pamela

  81. We’re all pulling for you Hazel

    I’m praying that your surgery went quickly and your recovery goes even quicker! Have someone post for you if you can. We’d all like to hear that you’re doing well.

  82. I echo Kims thoughts for you Hazel! Thinking of you Hazel as I am sure everyone here is. Take care and look forward to hearing of your recovery. Hope to see you here relly soon. God bless.

    Janet xx

  83. Hi Hazel,

    I think you are going in for your thyroid surgery tomorrow or Thursday. Just wanted you to know that I am thinking of you and know that all will go well and before you know it, you will be getting that darned insulinoma out too! Be a patient patient as someone said to me and get better soon!

    Best to you,

    Kim

  84. Hazel,

    You really have a lot to think about! August 12th and September 12th are on my calander. Though this can be an uneasy time for you, I’m sure you are both anxious and excited as I was.
    The pancreatic surgery, whether or not is is laparascopic, is a major surgery, but Dr. Parekh is so confident and matter of fact, I think that really helped keep me at ease. And you will love his assistant and resident doctors. They are wonderfull and caring people (they seem very serious, but I found they have a great sense of humor! 🙂 So try only to look ahead to the future, and I will be praying that God will keep you in perfect peace as your mind is stayed on Him. Please let us know as soon as you can how the thyroid surgery goes.

    Pamela,

    I glad you are feeling so good! I hope your plans for the summer have worked out. We’d love to meet with you if you have time. If you can make it down to San Juan Capistrano
    maybe Suzie can drive up as well! Anyone else??? 🙂

  85. Pamela
    It’s wonderful to hear how well you are doing and so soon after your surgery. I am greatly encouraged by your progress, thank you for sharing it with me. It must be so good to have some control over your life and to be able to eat, exercise and go on as normal. I imagine the weight loss is a big achievement too, knowing how terribly hard it is to maintain a healthy weight with this illness. What a success!
    Interestingly there are no symptoms for my thyroid cancer. If the tumour was bigger it could have given me a hoarse voice or obstructed my windpipe, but it is small so isn’t giving me any problems. The blood sugar problems which I’m hoping are from this tumour on my pancreas, are a different story. Each day I struggle with dizziness, weakness, speech difficulties etc and need to eat often to manage these symptoms. Unlike most people I don’t black out but still have classic symptoms of hypoglycemia. The thyroid surgery will be done here in New Zealand as it is a common operation so my surgeon has a lot of experience. All going well my pancreatic surgery will be at USC as there is just not enough experience here among surgeons due to our small population.

    Janet
    Thank you for your supportive words and for your prayers. It sounds like your son’s wedding was one of those truly special moments in life that you’ll treasure forever. I appreciate your advice and I think step by step is the best way to move forward with the next two to three months. I like to think Pamela is right and that all my problems have come to a head at once so I can get well and move on with life. I can’t wait!

    Take care everyone, Hazel.

  86. Hi Everyone

    I hope everyone on here is doing ok.
    Pamela
    Harrys wedding on Saturday was wonderful, just like a dream. The both looked so beautiful, but more importantly the looked so happy and so in love. I was of course both proud and tearful. Harry really was a gift from God, with all the health probs that accompanies this horrid insulinoma condition. To see him grown up, healthy and handsome I feel very blessed. Thanks so much for asking. So glad you re doing so well.
    Hazel
    You are in my prayers and especially on your surgery days. Pamelas posts must be very encoraging for you, just take each part of your treatment step by step and before you know it you will be out the other side, getting your health and strength back. Take care and keep that chin up!

    Love Janet x

  87. Hi Everyone

    I hope everyone on here is doing ok.
    Pamela
    Harrys wedding on Saturday was wonderful, just like a dream. The both looked so beautiful, but more importantly the looked so happy and so in love. I was of course both proud and tearful. Harry really was a gift from God, with all the health probs that accompanies this horrid insulinoma condition. To see him grown up, healthy and handsome I feel very blessed. Thanks so much for asking. So glad you re doing so well.
    Hazel
    You are in my prayers and especially on your surgery days. Pamelas posts must be very encoraging for you, just take each part of your treatment step by step and before you know it you will be out the other side, getting your health and strength back. Take care and keep that chin up!

    Love Janet x

  88. Hazel,
    I am feeling completely normal! Exercising, eating right… drinking iced tea…. i still have not had one soda…. or juice. I thought dr peppers would be hard for me to quit, but i guess i had really burned myself out on them during my low-blood sugar days! On aug. 11 it will have been two months since my surgery. My weight has gone from 149 to 133, by just eating and exercising normally. Everyone here that shared there stories and gave advice really prepared me and helped me before my surgery. I still feel like we all have to come together and meet…… because there are no others like us! You are probably really excited right now. And you should try and just think how its going to be feeling healthy again. Did you have a-lot of low-blood sugar attacks? Crashes? Are there different symptoms to thyroid cancer? You are going to USC?
    Hope everyone is doing well! hope to hear from everyone soon!
    Pamela

  89. Hi,

    I’m booked for my thyroid surgery on Wed 13th August which is Tuesday 12th northern hemisphere time. This has been rescheduled for some reason as it was meant to be Wed 6th so I hope it goes ahead. My pancreatic surgery is booked for a month later on Friday 12th September northern hemisphere time. I can’t wait to have that done so I can feel better but I’m afraid I’ll be really nervous on the surgery day. Were you guys all nervous when you had surgery?

    Pamela
    How are you getting on? Are you back into your usual life? I hope so and I hope that this illness is all behind you now.

    Hazel.

  90. Janet,
    Just wanted to see how your sons wedding went…and to send best wishes to you and your family!
    Hazel
    hope you are getting the answers and care needed at this time… Let us all know what is going on.
    Its been quiet out there with everyone! I hope you all are feeling good, and staying happy!
    God bless!
    Pamela

  91. I am a 33 year old female with a genetic disorder Neurofibromatosis Type 1. This disorder increases my risk for developing tumors anywhere in body. I have suffered from repeated nausea episodes 2 hours following a meal. I just recently started testing my glucose at home at 1 hr and 2 hours after eating. I have discovered that my glucose level is on average 64 1 hour after eating and 2 hours after eating is is rountinely in the low 50’s. A 3 hour GTT test confirmed this. I have had a CT of the abdomen and an Octreotide Scan, both of which came back normal. My GI specialist performs a colonoscopy and endoscopy every 3 years because I had adenomas in my colon at age 30. This summer I had a repeat colonoscopy and no adenomas were present.
    My gastrointestinal specialist told me that because of my genetic disorder that causes tumors I should see a Endocrinologist. We have ruled out any GI tumors/disorders that could cause the chronic nausea. He recommended a Endocrinologist but it was going to take 5 months to get in to the one he recommended.. I scheduled the appointment and have kept it, but I was able to get into a different Endocrinologist sooner and did. She was great on the initial appointment and requested the standard blood work including 3-hour GTT test, C-peptide, Insulin Stim, Thyroid, and Parathyroid levels, and cholesterol. The only result that came back low was my 1 and 2 hour glucose levels during the GTT test. At my follow-up visit she walked in the room and said “she was running behind” schedule” and spent exactly 2 minutes discussing my results. She simply said that based on my GTT test, I needed to “watch my carbs”. Then she left the room. I know see why it was so easy to get into her. Also after my disappointing experience I read reviews of that doctor and was shocked that other people had the same experience with her. I have one more month to go before I can get into the other Endocrinologist and my GI doc is adimate that I get the second opinion.

    My Gastrointestinal doctor is really concerned that I might have an insulinoma because of my chronic symptoms of hypoglycemia and because of the Genetic disorder that my son and I have that pre-disposes us to developing tumors anywhere in the body. I had know idea that my sudden changes in mood, tendency to “space out”, memory problems, nausea, and repeatedly low blood sugar levels, constant craving for sweets, and always wanting to snack throughout the day and at night, might possibly be related. My blood sugar has never been over 95 even right after eating a meal or drinking a coke. I start have Hypo symptoms when my blood sugar is in the low 60’s. Not sure whether this is pertainent or not but in the last 2 months I have gained 18 lbs. My weight 2 months ago was 140 and now I am 158.
    And the weight gain is not from inactivity or lack of exercise or eating junk food.

    I was wondering if anyone knows whether or not an Octreotide scan can miss small Insulinomas???? If so how accurate is the 72 hour fast??? Do you always see abnormalities in C-Peptide levels???

    I am so frustrated because I have been suffering from the symptoms of low blood sugar for the last 5 years and in the last year it has become more severe?? I didn’t realize until this past year that my glucose levels were so low during my episodes. I just was being treated for chronic nausea. Once I started testing my blood sugar I noticed the low glucose levels which are temporarily relieved by drinking a COKE or eating candy.

    I have not been to any other doctors than my Gastrointestinal Specialist who is awesome and then the Endocrinologist who was horrible. I am apprehensive about going to the other Endocrinologist because I don’t want the same thing to happen as with the 1st one. Insulinomas are quite rare and many doctors may only see a handful in their career. Does anyone know which tests are the most accurate in detecting Insulinomas. I have read that many are not detectable until surgery is performed??? Do they still perform the 72 hour fast test????

    I am sorry for writing such a long entry. It was very comforting to find this site. I just wondered if anyone could answer my questions above. I am logging everything I eat and testing my glucose levels at timed intervels. It is expensive buying all the strips but I was hoping to find a patterrn.

    I am grateful for anyone who could give me some input.

    Rachelle

  92. Hi all,

    I’m going through the processes before having thyroid surgery but have held things up a little by getting a second opinion by another lab on the cancer diagnosis, and meeting with a second surgeon to check I’m getting the best care. The surgery won’t be this coming week but could be any time after that and apparently I’ll heal within one to two weeks following the thyroid surgery. USC want to leave four weeks between surgeries so will call me in a couple of weeks with a new surgery date.

    Peggy

    I’m not sure what papillary means but it is one type of thyroid cancer, and the one with the best outcome for the patient. 70% of all thyroid cancers are papillary and it effects more women than men, with most people being between 20 and 40 when they’re diagnosed. Thank you for keeping me in your prayers, it means a lot. Great to hear your friends and neigbour are doing well, they like you, are inspirational to me.

    I appreciate the supportive comments and kind words that have been posted. It’s so great to have friends online who understand understand what health problems are like. I’ll keep in touch when I can.

    Hazel.

  93. Hazel,

    How’s it going?? Have you heard from USC yet? I can’t believe you have to deal with thyroid cancer right now! I don’t have any idea what papillary means, but I hope it’s a good thing. I have two friends that had thyroid cancer. One had their thyroid removed years ago and is doing just fine and my neighbor just had hers removed the same time I had my surgery. She’s doing well also. I will continue to keep you in prayer. Please let me know when you have more news. I’ll keep hoping for August.
    Peggy

  94. I’m not sure that I understand where to post on this site. I don’t mean to be disrespectful Janet because this isn’t a direct reply to you or your son’s upcoming wedding, I’m just trying to introduce myself. A few weeks ago, I was searching through symptoms and causes of acute diarrhea and racing heartrate and I came across insulinoma. I read the article and I started thinking that perhaps I’m not actually crazy. It started 3 years ago. I didn’t have anything in particular that seemed to be wrong. I just felt tired and just not right. A few months later, I had my first ‘seizure’ and I was diagnosed with complex partial seizures. During that 1 1/2 yrs of anti-seizure drugs, I was still having episodes of would-be seizures. I zone out, literally. Stare out into nothing, I’m confused, extremely hot, heart races, mind fuzzy, blood pressure spikes up, feel sick, face and hands tingle, etc. Lately, I have enjoyed a new symptom of diarrhea during this. I have neurological symptoms too, which led me to an appointment at Mayo in the Epilepsy Dept. It’s like half of my body doesn’t want to work. I can’t walk a straight line and act and talk like I am drugged. Doing simple tasks takes immense mental effort. At my last appointment at Mayo in October 2007, I was told that I didn’t have epilepsy or a tumor in my brain and that perhaps my “seizures” were from a mental health issue rather than a brain issue. I was so ashamed that my mind would be making myself this sick and so I have never gone back for another appointment. I was scheduled to see an endocrinologist because, at the ripe age of 36 (now I’m 37), my body has decided that my periods should only last 2 days tops and it can’t decide on a set time to come. I canceled my endocrinology appointment because I didn’t think that I could go there and be told that I need to get it through my head that the problem is in my head again. However, in the recent months, I have been continuing to go downward. Now, during mid-cycle and during my period, I enjoy emptying my intestinal tract and constantly feeling like I am going into shock. At my side, I keep a stash of soda crackers, mints, and Dramamine. I yo yo through the day between eating and feeling sick. I have to eat sugared plain oatmeal or some other large snack before bed, and much to my husband’s angst, I even eat crackers and mints in bed until right before passing out. I know I need to go see someone. It is just very hard to muster up courage when others have said they don’t think anything is wrong. How did you all muster up the courage and talk with your physicians and even muster up the courage to say “I think that I have an insulinoma”. I just want to be able to say, “There is something so wrong with me. Please stop thinking it is stress and test me for something else.” Thank you for letting me unravel and thank you for putting your stories out there. Anne To Janet: enjoy the wedding and all of the craziness. Congratulations! It is wonderful when a family grows!

  95. pamela!

    Glad you are continuing to improve and geting yourself stronger, that is great news for you and your family and will also give encorougment to others, particulary Hazel who is due to have surgery soon.
    Thank you for your kind words and best wishes about my son, Harry and his forthcoming wedding. You are spot on, things are really hectic , almost manic round here at the moment with the arrangements. I am working hard after myself, so that I can stay well for this special day.
    Love to all,

    Janet xx

  96. Hello everyone!
    As i was told each day i have gotten stronger and able to do more things! I thank God every day.
    Janet…I am so excited for you and your son and family! What a blessing to see the next stages of life to take place in your sons life! You must be so proud! August 2nd is so close it must be very exciting around there!! Make sure you take care of yourself as i know you probably are trying to do so many things for a perfect day! Congratulations to your son and soon to be wife!!
    Just think it probably wont be to long before you are enjoying grandchildren!
    Hazel
    I am glad to hear you you have got the proper diagnosis. Wow 23 years. It sounds to me everything came to head at once so that you can get all fixed and healed so that you can live and enjoy a healthy life!! You are in my thought and prayers. Please keep us informed.
    Peggy, we are still hoping to make it there soon……….We called on some home rentals in Malibu….. most wil not rent for a weeks time….. the others are ridiculously expensive! Looks like we will probably be staying with the in-laws.
    Love to all! Pamela

  97. Hazel,

    You are a strong woman! I have you in my thoughts and hope that it won’t be long until you have all this nonsense behind you. Keep us posted as to your progress.

    Best,

    Kim

  98. Hazel,
    Thanks for your kind words and well wishes for my sons wedding, I feel very privelged to have a lovely son.
    I am so sorry to hear about your complications/setback. You will need to be very strong right now, but I am pleased and relieved that your thyroid cancer is papillary and has a good prognosis. I just hope your pancreatic surgery will not be delayed too long, as the sooner you can have the tumour removed, the sooner you will be on the road to some sort of normailty. My love and prayers remain with you over the coming weeks, so take care and keep in touch with us all when you are able.
    Pamela,
    I hope you are continuing to improve and getting stronger as ech day passes.
    Love to all!

    Janet xx

  99. Hazel,
    Thanks for your kind words and well wishes for my sons wedding, I feel very privelged to have a lovely son.
    I am so sorry to hear about your complications/setback. You will need to be very strong right now, but I am pleased and relieved that your thyroid cancer is papillary and has a good prognosis. I just hope your pancreatic surgery will not be delayed too long, as the sooner you can have the tumour removed, the sooner you will be on the road to some sort of normailty. My love and prayers remain with you over the coming weeks, so take care and keep in touch with us all when you are able.
    Pamela,
    I hope you are continuing to improve and getting stronger as ech day passes.
    Love to all!

    Janet xx

  100. Hi folks,

    I have a complication. The day after I posted I found out I have thyroid cancer and will need surgery to remove my whole thyroid gland within the next couple of weeks. It is papillary thyroid cancer so my prognosis is great, but this may effect when I can have my surgery at USC. I have a message in for them to call me and until I have spoken to them everything is up in the air.

    Janet

    Thank you so much for your well wishes! I can’t imagine having this dreadful disease twice in life and it is a testament to your strength and courage that you have survived. My whole heart goes out to you. What a credit your son is to you, and what an achievement to raise a good man when you must have struggled so badly. What a wonderful day August 2nd will be for you!

    Peggy

    I knew you’d be thrilled for me! I had also thought we could meet all going well, and you never know I may still make it there in August. That would be great.
    I was never given or made aware of blood sugar monitors and I should say that we don’t get the same level of care in NZ. Doctors here worry about high blood sugars and not low blood sugars unless you black out so I had no chance of treatment. Only now that I have found my tumour will they take notice of my hypoglycemia. For that reason I have been able to request a glucose drip during my thyroid surgery and make hospital staff aware of my condition. Of course the surgeon would also love to do my tumour surgery as they don’t see many here but I’ve read the posts and I know I need an experienced surgeon.

    Thank you all for keeping me in your thoughts.
    Hazel.

Comments are closed.