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. Damon

    Thank you for writing in and updating us all on your mum’s recovery. I’ve been thinking about her all this weekend and I’m so glad she is recovering so well.

    Sue
    Also thinking of you and hope the time comes soon and speedy recovery when you can put all this past you. It’s a new life we are given after surgery.

    Angie
    I didn’t have a good experience in Hammersmith Hospital but maybe if I had got sent to Bart’s instead, I would have been diagnosed quicker. In hammersmith, they too came up with the conclusion that i was too young to have an insulinoma so they’d decided I had reactive hypoglycaemia instead. i was only 27 at the time.

    I have a surgeon friend who works in Barts and in the royal Marsden. He says Bart’s is an excellent hospital in London.

    Has anybody had their spleen removed in surgery? How are you treated? I had a pneumovax injection initially and they told me I needed it every five years. Last October it was five years since surgery but because I was pregnant and now breastfeeding I still cannot have the booster jab. Our winters here in Gibraltar are quite cold and humid and I’m scared of coming down with a really heavy cold.

    Love to you all xxx Angelique xxx

  2. Angie-Thank you for your concern. I read your post from 1/21. My doctor does not seem to be sympathetic at all. I have found that many nurses in the hospital praise her, but she has no bed-side manner. She is very harsh and not personable. This is why I was hoping for a second opinion. I need a doctor that cares about my well-being. I mean, I’m not saying she is heartless I just think she is confused about what is going on with me so she turned her back on me.

    Pamela- Thank you for your words of encouragement. I am literally taking one day at a time. I feel sick everyday!! –You are an angel for sending Jackie flowers!! May God bless you!!

    Peggy-This is in response to your post on the 23rd. My current doctor, Dr. madu is very confused, so she is saying I may be on my way to being a diabetic. She said the same thing about me being a possible diabetic when I first started seeing her. Then she saw my very low sugars and said no it can’t be diabetes. Now she is back to saying diabetes again. I am so confused by her and I think she is frustrated that she doesn’t know what it is. She said it is not an insulinoma for sure and she continually said this, however she said I should go back for a second endoscopy in a year. I was wondering why go back if you are so sure it is not an insulinoma? So, I am hoping, praying and believeing that Dr. Singer will be able to help me. I don’t remember if I put this in one of my other messages or not, but I had an endoscopic ultrasound at UCLA and they found a growth. My doctor said there is a lesion/nodule in the head of my pancreas but my blood work doesn’t show insulinoma. I want to know if this can happen. Can there be an insulinoma if the blood work doesn’t show it? Also, my cortisol was low, so they thought I had an adrenaline deficiency.
    This is so hard. I am sick daily. I was at work Thursday and I began to feel shaky. I had eaten breakfast and it was not quite snack time. I have a One touch machine so I checked my sugar and it was 54. I got scared. I became very incorherent before at 68, so I know I am becoming immune to the low sugars. I keep going and sometimes by the time I check my sugar it is too late.
    I don’t know if you dealt with this, but my head often feels foggy, like my sugar is constantly dropping. I also am having blurred vision more often. I am irritable and anxious. I also am extremely tired all of the time. The exhaustion has been going on for a long time. I have been dealing with low sugar for over 10 years, but I can say over the last year or so things have gotten progressively worse. So many of the stories I hear on this site sound so similar to mine. I am going to push for more tests when I see Dr. Singer- I hope he knows what to do.

  3. Jackie, Damon,
    so so so happy to hear all went well, and each day does only get better and easier! best wishes to you and your family!

    pamela

  4. Damon,

    Please tell your mom how happy I am, as I’m sure all of us are to hear that another insulinoma victom is cured!!

    Peggy 🙂

  5. This is Jackie’s son Damon. I visited mom at the hospital tonight and she gave me direction to come to her house and post an update for her. Her surgery was Friday morning @ 11:30 and everything went well. She went in with a slight cold and fever and held onto the fever until this morning. The tumor is benign, praise God. Mom was in a lot of pain all day Friday and through out the night. About 5:30 am this morning she woke up and had her sister help get her out of bed and take a bath. I saw her twice today and each time she looks better. I helped her take a light stroll down the hallway. She’s working on her breathing treatments to help get her lung capacity back to normal and that seems to be helping her recovery. Her pre-op blood sugar was 59 and her blood sugar was in the 150’s today. She says her head in general feels very clear today.
    Mom specifically wanted me to send a big, virtual hug to Pam for sending the flowers to her room. She got them today and they are very pretty and thoughtful. This community has helped her in ways that we’ve not been able to. Thank you all for your support, advice, encouragement, and stories. Mom has really leaned on all of your experiences. I will post more after I see her tomorrow. Thanks again Pam and everyone here.
    Sincerely,

    Damon Gray

  6. Jackie and Sue,

    I too am praying for you both, I can’t wait to hear that it is all behind you!

    It’s good to hear from you Pam, and Angie and Kim…
    I’m so caught up in this “new” life, it’s hard to stay in touch, but we are bonded forever. 🙂

    Stacy,

    Wow, I didn’t know that your family was diabetic. Maybe you are… Before being diagnosed, did any of them have the same symptoms? I was actually told by an endo that I was on my way to diabetes as well…
    Insulinoma seems to depend on if your body kept producing a lot of insulin even when your sugars were as low as they were. I’m assumiing yours did not? I would call that Dr. and ask if the test results were conclusive, or if they were absolutely sure that they proved that you did not have an insulinoma. I’m sure you will be bringing those records to Dr. Singer. Yes, I have heard that he is good. You’re fortunate that he will see you so soon. Just be patient and keep eating! I drank soy milk all day long instead of eating constantly. It would bring me up quick enough, and I wouldn’t crash quite so fast. The surgeon said that I was the only one that he had seen that was not over weight. But do what you have to do! The 26th will be here soon enough. I will pray that God will keep careful watch over you.
    I worked in a classroom throughout my disease, snacking constanly. I would wake up some mornings with a bedroom full of paramedics, and then go to school, with a huge headache I might add. (If they could only learn that we only need a small amount of dextrose to wake up!) I know it’s hard to explain, most people aren’t going to get it. But God did send one or two people in that 15 years that were always looking out for me, making sure I felt o.k. and they always had food available if they could tell I needed it. I broke down quite a bit, It is a humbling experience. But everything has it’s perfect work. I know your 3 year old is your main concern. You want to be there 100% for her. My 17 year old lived her whole life with me being sick. It’s taken it’s toll on her, but I have to say that God used even this to bring about His purpose in her life. So nothing is for not, at least not in the christians life.
    I know it’s a bummer loosing your license. I didn’t drive for a year, but I assured them that I had people keeping watch over me and driving me. I learned to check my sugars everytime I got in the car and only took short trips.
    So far you’re the closest person to me with this disease.
    If you’re interestd in talking, maybe I can email my phone number to Jon and he would send it to you…

  7. Sue and Jackie,

    I’m thinking of you. It is a lot to go through but is nothing compared to dealing with insulinoma-itis! Take care of yourselves and be patient.

    Best wishes,

    Kim

  8. Sue.
    My prayer and thoughts will be with you too on the 28th. I was getting mixed up, it is you having whipple. Try to just focus on recovery, as I said its not easy, it took me two weeks in hospital and it was 3 months before iI was anything like, but 6 months to be really on top of it. But every day really does get easier and its such a relief to be rid of the insulinoma. God bless you.

    Janeti

  9. Jackie

    I wish you all the best for your surgery; my prayers and thoughts will be with you. The whipple op is a longer recovery and its no use pretending that its easy, but it is a lot much easier than coping with having an very overactive insulinoma. Just take each day at a time and focus on being hypo free. Each day will be so much better than the next. Please let us all know how you are as soonas you re able. God be with you.

    Love Janet xx

  10. Jackie,
    I wish you all the best. i am scheduled for surgery on jan 28. The waiting is making me anxious. I can’t wait for it to be over with. I was told yesterday that I will be having the whipple operation. Did anybody have that? What was the recovery like?
    How long was it?

  11. Jackie,
    I am so glad your getting this horrible thing over with!!! best of luck to you, and God Bless!!

    Pamela

  12. Jackie

    Wishing you really good luck and hope all goes well – we will all be here waiting for you!!
    Thinking of you!

    Angie

  13. Hi Angelique

    I didnt realise but ive used another email so its moderating my replies because of that!!

    I was treated at Barts then had surgery at the Royal London in Whitechapel.

    I have to go back every year to check my blood results as , quote “I was young to have this condition and it may return although unlikely”
    I was just pleased to be classed as “young” for something! Ha ha!

    Originally I went to my doctor because I was always tired, when my results showed I had very low blood sugar we talked it through and then of course I mentioned all the other symptoms that I hadnt really thought about before. I just thought it was me and I had trouble when I went without food for some time, I never realised there was any condition that caused it!!

    It all snowballed after that. I was referred to Whips Cross my local hospital but they immediately referred me to Barts. Within 6 weeks roughly I was in Barts having a 72 hr fast!

    It all happened in 10 months really right up to surgery.

    They reckon Id had it for about 10 years. My body had got so used to existing on low blood sugar for so long, it took a little extra regular excercise to push it over the edge!

    One occaision was really really odd – I started training for the race for life, and I mean walking, I had just left my house and walked 500 m when my whole body from chest down started tingling, we walked for I and half miles in all and I was such a mess when I came back all over the place pins and needles, shakey, the lot. Couldnt explain it at all. I was slightly concerned and wondered what was going on. It was a couple of weeks after that I hurt my back and went to the doctors so at the same time asked for a blood test.

    All wierd! Needless to say I didnt do the race for life that year!!!

    I may try that walk again now – !!! well sometime!!

    Angie

  14. Hi everyone, I am off to surgery this morning. They did not cancel it because of my head cold. I am so glad. Do not want to think about this anymore.
    Angie, I can see your posts too.

  15. Hi Angie,
    I can see your postings. I don’t have any problems receiving your mail. Were you treated in the U.K? Where did you have your surgery?

  16. Can anyone see my comments?
    Can you see a blue flag across the bottom saying “awaiting moderation”
    If so can you post that you can see it and Im not wasting my time writing???

    Im beginning to get paranoid!!

  17. Pamela, you will not believe this but I am running a low grade fever and have a slight head cold. I am waiting to hear if my surgery will be put off or not. I am so frustrated right now. Thanks for the good feedback on Dr. Garner. She said she had done 20-30 of these and I have been really impressed with how she has handled everything. Will post when I know what is going on.

    Stacy, keep fighting the good fight. Hopefully this new doctor can get on top of this.

  18. Hey Jackie,
    I am sure you are preparing for your surgery tomorrow, and very anxious, scared, and excited all at once! Hopefully you can have someone write in and tell us how you are.i know you will do well, and be a new person and a new life before you know it! I have heard good things from the team at southwestern medical that Carolyn Garner is a great doctor and experienced with these tumors. So you will be in good hands! what time is your surgery? My prayers are with you for a successful surgery, fast recovery, and a healthy new start in your life!!!
    oxox Pamela

  19. Stacy

    Sorry I just had to comment… Is your doctor sympathetic? Its just that she has said you are on your way to being diabetic!!

    Its the complete opposite of Insulinoma! You have too much insulin – diabetes is when the pancreas doesnt produce enough!! Shes odd!!!

    Angie

  20. Peggy-Thank you for the advice and insight about USC it is very helful. I had my 72 hr fasting tests at St. Joseph hospital in Orange (Orange County Ca.) Dr. Madu is the endocrinologist that requested the test. She said there is no insulinoma due to the blood work even though I had a 37 sugar and 48 within the same day. I contacted USC again today, I am being VERY persistent. They said I can get in to see an endocrinologist named Peter Singer Feb. 26th. Peggy have you ever heard of him? He is supposed to be one of the best. I know I just need someone who is knowlegable and open minded. I most of all need someone who is willing to help me. I was really hoping to get in earlier because I am so tired of what I going through. Each day I wake up and have no idea what the day will hold. I have to trust God more than ever because is it such a scary situation. Now fighting for my drivers license is hard. My doctor just filled out a Driver eval that says my condition makes me an unsafe driver. Thank God nothing has ever happend behind the wheel. I have a three year old and I want my quality of life to be good for her.

    Thank you all for your support and care. I am a middle school teacher and I have been gone off and on depending on how my days go. I feel I am constantly trying to explain my condition and telling people I am not a diabetic. My father and two sisters are type one diabetics so my doctor often says that is probably my problem. She says i am probably on my way to becoming a type one diabetic too. I am just ready to get to the bottom of this. I want my life back. I want to be rid of the low sugars, fatigue, forgetfulness and all that comes with this condition.

    This site is a God Send…again thank you all for taking time to share your stories.

  21. Kim,

    Love the phrase “couch potato phase”, it describes Michael so well. He hasn’t been to work since struggling through last Thursday, and has had low blood sugar all weekend. He says it is like living with a low grade flu/cold – no energy, not interested in anything. His numbers haven’t been above 3.6 (65 in US), all week. As a teacher he has to do lesson plans for the substitute teacher on his days away, and he is even finding these a challenge to complete these days.

    I have just had some surgery myself; needed some plumbing repairs which I have been putting off for 8 months waiting for him to get sorted out. So now I am a captive couch surfer and need him to ‘manage’ the household to some degree. We decided to go ahead with my surgery because we know he will not get his before 6-8 weeks, which is my recommended healing time. Of course, I filled up the freezer with food beforehand, and the two ‘men’ (Colin is 15) should be able to do a few loads of laundry and run a dishwasher once in a while. As I read your assorted comments I am really beginning to realize that Mike has probably had this a lot longer than any of us knew. He has been feeling lethargic and lower energy for several years.

    I do find it interesting that some of you have had such difficulty getting diagnosed. Mike was diagnosed very early, although every move up the chain of command required a few more confirmation tests. But all the doctors have agreed that this is definitely an insulinoma. What they don’t know yet, is where exactly it is. He had a calcium stimulation arteriogram last, and that gave them a ‘hot spot’ in the head, but not exactly where. The endocrinologist he saw in Vancouver had considered putting him on the diazoxide drug, but felt it came with its own challenges, and so far, Mike was remaining relatively stable with frequent testing and eating. He was warned that he had to test just before driving a car, since if he had an accident, and could not prove he was stable before starting, he would be considered at fault no matter what. So, absolutely no long distance driving for him until this is finally dealt with. Our frustration has been with the length of time it takes to get through the chain of command to finally get to a surgery date. In Canada, we have government-managed health care, and there are too few beds and services, and too many people needing them. Sort of like the NHS in England. We cannot go private in Canada, unless we went to the US at our own cost and that would not be possible to afford.

    Right now, my biggest challenge is that he is busting out of all his clothes with the weight gain. One young student stuffed his backpack under his shirt and said he was going as ‘Mr. S.’ for Halloween. The students sure do notice things that are going on amongst their teachers. Several have asked him why he gets to sip OJ during class, when they are not allowed any food or drink in the classroom.

    So here we are, one invalid looking after another in our house for a few weeks, but I know I will get to return the favour once Mike gets his operation done. I will have to be in Vancouver with him, and leave the teenager and pets at home alone (now that really scares me!) until I can bring him home to recuperate. At least we have some family in Vancouver, so we will have a base for operations while away from home, and several friends will try to keep an eye on the kid and pets for me, as we have no family in Prince George.

    As many of you have said, it is nice knowing that although this is a bizarre club we belong to, we are not as alone as it sometimes feels. That is what this blog does for me.

    Thanks!

    Heidi

  23. My goodness, there has been a flurry of activity on this site lately. I was beginning to think insulinomas were becoming obsolete – unfortunately not.

    I just want to say congrats, good luck and best wishes to everyone who has had surgery, is facing surgery and is still trying to get diagnosed.

    Having an insulinoma was, for me, one of those life changing events, the kind where you think in terms of “before the insulinoma” and “after the insulinoma”. I think that when you have it, you are somewhat in survival mode – just rtying to get through the day, eat enough to keep your blood sugars up, dealing with the crashes and being fearful for another crash. I didn’t realize until after my surgery the full impact on my life of having an insulinoma. Being a single mom (with teenagers thank goodness) with a job and several animals large and small to care for, there was a constant feeling of not being able to keep up, not being able to do what I needed to do to take care of everyone, and a lack of confidence in my body to hold up. It was terrible.

    My body healed quickly form the operation. If I had been sick for a longer period of time (i.e. had a longer couch potato phase!), I probably would have been in worse shape physically and taken longer to heal. However, as quickly as my body healed, it took my mind much longer. Anxiety from facing situations where I’d had a bad crash, or just that terrible feeling you all are familiar with that you’re just generally “losing it”. Learning to trust in my body again – that it has the strength to keep going even if I’m tired or hungry despite the alarm bells that are going off telling me otherwise.

    People don’t understand what a toll this illness takes. If you don’t have cancer, its no big deal. I have never felt so alone and I have learned so much. Challenges only make us stronger. That is so true. Learning to override that anxious voice in my head has been an invaluable lesson. Mind over matter is right and sometimes neceassry for your survival!

    I am thinking of all of you and wish you all the best. This website has been an incredible source of comfort and information to me. Thanks to all of you! Sorry for rambling!

    KIm

  24. Stacy

    Ive just re read all the posts as (not all all!! just all since you posted!) as I having been reading all the advice everyone is giving you and had not seen yours. Take comfort in what everyone is saying! – whoever says your symptoms are down to bad eating habits is talking out of their backside (polite).

    Even if you are eating sugar all day and seesawing up and down your insulin levels would react in sympathy – you may not be that healthy but it wouldnt stop your pancreas working!!!

    Doctors make me really cross! If its not insulinoma what are they saying it is???

    All I can say is read Peggy’s posts as she went through this for so many years but eventually got a diagnosis. Insulinoma is so unpredictable. Being stubborn would seem to be your best option. Make a really big fuss!

    Good Luck will be thinking of you!!

    Angie

    Ps everyone, may be coming to Orlando next Easter 2010, who ever is near???

  25. Stacy.
    I can only echo everyone elses words of comfort to you. I so know how frustrating this is for you and although its little help, I am feeling this every step of the way for you right now. My prayers remain with you and also with everyone in our world that suffers from this awful condition. Take care and keep your chin up and remember we are all with you. Prayers and love.

    Janet

  26. Stacy, my prayers are with you that you will find the right person that will do the right thing by you. How frustrating and so easy for someone to say you are not eating right. Good grief, you can’t eat enough. I never thought I would get tired of eating. Keep fighting for you. This is an awful disease and so frightening to go through the hypo attacks. I agree with Pamela, take this information to the physician. One thing that helped with my diagnosis was my fasting sugars were dropping but my insulin levels were rising. The last one my fasting was 41 and my insulin levels were 45. I never had to do the 72 hour fast.

  27. Stacy,
    I am so frustrated for you. The endocrinologist i saw did the same exact thing… blood sugars read below 40 and in the 30s countless times and she insisted it was my diet. my fault. Later going over the medical records that i had from her to have transfer to my new endocrinologist stated that i needed a psychiatrist, that she believed i had an eating disorder. I was 6 months pregnant and weighed 160 pounds. By the time i became pregnant with my second daughter 18 months later, my sugars were spiraling out of control, and i did not know what to do, and seeing her every three months for her to tell me “you are just not eating right” was not getting me anywhere. I asked her to recommend me to another doctor,or Mayo Clinic… And she said ” i am just not going to do that, i think you can control this with your diet.” After i had my surgery, i had my husband put the 9 page hand written letter in the mail telling her everything she did wrong, and she needed to do some research and learn some valuable lessons. after all she truly made me believe i was crazy and eating wrong. I suffered for 5 years. I wrote down this web-sites address for her to see some of the other people who have been misdiagnosed as well. And the other awful thing about it was i cant even count all the dietitians and nutritionists that i went to and i did exactly what they said to do, and then getting the worst lows i had ever had, one resulting in a seizer. I know you are awaiting your other doctor appointment, and its difficult doing the waiting game, but just for your doctor who is So Sure you do not have an insulinoma, go by the office and leave a packet. Do what i did… print all these blogs…. takes forever………. a huge packet…… and even print off the web-site that Nicolai sent Which was very interesting , thank you, and let him or her know that your sugars should not be at these crazy dangerous levels, there is something wrong, your eating and eating, and having lows, ask for another scan of some sort. i had 2 ct scans…. it was an mri that found mine. Then i went to southwestern med center for another mri to make sure! Then met with my surgeon to discuss the surgery date!! BE PERSISTENT ,
    BE PERSISTENT! And i am praying for you! Hang in there!
    pamela

  28. Stacy,

    After living with insulinoma for 15 years, my mind and body learned to adapt to low sugar. In the 4o’s I could feel totally normal at times. The danger was that I could drop too low very quickly and be out of it without any warning. One time, I picked my daughter up at school and stopped at a store, while inside I had a “feeling” I should check my sugar and found that it was 27! Who knows what could’ve happened if I had gotten in the car…Insulinoma is not predictable! Just because I was fine one day doesn’t mean I would’ve been the next. I have some questions…
    Have they put you on diazoxide?
    If they found a growth on your pancreas, what do they think it is??
    Where did you have the 72 hour test done? Is the doctor that read the test qualified to say that the results do not show insulinoma? I don’t think many physicians are since the disease is rare and they don’t have enough personal experience. When I had my 72 hour test, my sugar went low and then increased as yours did. The bottom line is how high your insulin level was when your glucose was at your lowest. One time my insulin wasn’t high enough to confirm a diagnosis even though my sugar was in the 30’s. I also had two endoscopy’s at UCLA that didn’t find it.

    As far as insurance goes, it took me over 13 years to get to UCLA,USC! I did see Dr. Baron, twice. She seemed to think I could manage it with the diazoxide. You can debate that and have her refer you to thier surgeon. I saw him for two minutes, and he ordered the CT. Saw him again for 5min. and my surgery was scheduled.

    There’s a chance you do not have the disease, but they better make darn sure you do not!
    I’m not usually this stern by nature, but after suffering for 15 years I definitely can relate to the frusturation you are feeling.
    I began reading this blog when Angie poted her first comment over a year ago. I was so discouraged by that time, I couldn’t even post a comment. My daughter Lacey posted for me on Feb. 24th ’07. She showed me how to pull up only one persons name and get all their posts…I’ll see if I can remember how. My surgery was done on Feb. 14th ’08…It’s a whole new world!

    Peggy 🙂

  30. Hello Everyone- I often get choked up reading the posts because someone understands me.

    Nicolai-Thanks for the advice. I have had two 72 hr fasts but the first one was unsuccessful because I got sick so I only truly count one. I would be interested in the research paper thank you for offering.

    Angelique-Thank you for the words of encouragement. Wow, eight 72 hour tests that is alot. My last test was so traumatic because they couldn’t draw blood easily when they needed it so I was badly bruised and incoherent with a 37 blood sugar. The doctor still said it is not an insulinoma even with my drastic lows. Thank you again.

    Peggy-I really appreciate your testimony about your experience. What a long battle. I am supposed to see Dr. Peter Singer or Dr. Jorge Mestmen at USC but they are both booked through March and April. I was also given the name Helen Baron. Did you see any of these doctors or have you heard of them? I was told I can see Helen Baron the soonest because she has more clinic hours than the other doctors and the two male doctors are supposed to be the best in the field. My insurance will only let me see an endocrinologist not a surgeon. Thank you so much for the name though so I will know who to see. I have read several posts but did not see when you had your surgery and how it went. This has been sooo hard and I pray that things go quickly because things are getting worse. I have to eat constantly just to feel good and I still go low. What were your sugars like? Thank you for your great advice, support and kindness. You are doing the work of the Lord and he is smiling on you for caring about others.

  31. Pamela, your posts are showing up and thanks so much for all that you share and all of your encouragement. 3 days to go and I can tell you I am really nervous and pretty emotional. It will be awesome to get his over with and get on the road back to normal. I am so tired all the time and I hope that is going to improve after this. I went shopping yesterday and on the way back home was unable to finish what I was saying to my daughter-in-law because my thoughts got so confused. I bought a candy bar at Target because I could sense something was happening. Good thing I had it. And lately I tear up over everything. I think it is just the anxiety of facing surgery. I am a basket case right now. Before long I will be writing along with everyone else encouraging everyone to get surgery over with and claim your life back. That is my hope.

  32. Stacy,

    Where did you have the fast done? I had a few 72 hr. fasts, one doctor would say I probably had an insulinoma and another would say the insulin was not high enough to prove that I did. I had to live with all the scary symptoms for 15 YEARS because they couldn’t find it! I finally went to UCLA and USC, but the endo’s just tried to help me “manage” it. Ridiculous! Tell whatever doctor you see at USC you want to see the surgeon Dr. Parekh. Hopefully HE will order a CT and they’ll find that thing! Their equipment and technicians are the best around. I had 3 endoscopy’s, multiple CTs and MRI’s etc. at other places wich showed nothing. They found it immediately at USC and I am healed!! Just be bold and insist that you have the CT. Don’t take no for an answer. I’ll meet you up there if necessary and talk to them with you!
    I know how frustrating living with this disease is. No one understands unless they have lived with it themselves. My faith was strong, but was tested. Remember endurance is faith stretched out and that perseverance is the intended outcome of the testing of your faith. Thank God for your supportive husband, and persevere!

    I’ll keep you in prayer,

    Peggy

  33. P.s Sorry I rattled on but the message is maeant for Stacey who is having problems with the 72 hour fast. Mine was repeated about 8 times.

  34. Hi Jackie and all who are undergoing investigations,

    I really empathise with you as i spent 3 years going to Hammersmith Hospital trying to get myself sorted. I was diagnosed in August 2000. I underwent all the tests in spain confirming I had an insulinoma. Then i was sent to St Mary’s in London that same November where I underwent all the same tsets again! Returned back to Gibraltar days before xmas and was referred to Hammersmith in Jan 2001. I had all the teats done again including the 72 hour fast. It was after that fast that they had doubts to me having an insulinoma as the insulin levels had gone up but not the c-peptide. They even had the cheek to suggest I was administering myself insulin to make myself sick!!! I had to return to Hammersmith throughout the year for check ups and more tests and it made me more confused. It was in summer 2002 that they came to a conclusion that i was suffering from reactive hypoglycaemia. I came back to Gibraltar and asked my doctor for a second opinion to be seen in Spain. My hypos became worse and I went into a comatose state when I collapsed. I was seen in Cordoba – Spain where they repeated the calcium stimulation test and said the tail was riddled with nodules. The endoscopy also suggested there may be one at the head of the pancreas but the surgeons wanted to perform an open laparotomy to do an internal scan of the pancreas. I had this surgery in Oct 2003 and had the insulinoma removed. It was 1.5cm on the neck of the pancreas. They removed most of my pancreas and my spleen and I still have part of the head. My sugars are now very stable and my quality of life is 99 percent better. All of you out there – life after surgery is LIFE, before that, i was just existing so I tell you guys to persevere and have faith. Thinking of you all.

  35. Hi All,

    Yes, the website is definately acting up. It took my first post several days to show up – just saw that it was on now! But this is such a great forum, and I really appreciate everyone’s input.

    My insulinoma was found by endoscopy (1cm long in tail of pancreas), and just got my CT scan results which didn’t show anything. I’m getting more scans done next week.

    I can really relate to what many say when learning about the surgery – you don’t want to go through all that “just” because of some blood sugar symptoms. But since so many have experienced a deterioration in their condition, I believe Laura (and the rest of you) are correct in saying that surgery is the way to go.

    To Nicky and Pamela, I appreciate your input regarding surgery. I have been very lucky to find a doctor with expertise in laparoscopic operations, and he will look at my case to see if it would be possible to remove the insulinoma laparoscopically, otherwise I’ll do open surgery at my normal hospital. I think it depends on how close it is to my spleen, which they may need to remove.

    To Stacy about a diagnosis. From what I have read and heard from my doctors, it is a matter of testing 4 things when you have symptoms after not having eaten: Blood sugar, insulin, proinsulin and C-peptid (the last two are pre-stages of insulin). If the blood sugar is low, the other 3 values should also be low. If insulin, proinsulin and C-peptid on the other hand are high (mine were all at the very top or above the normal ranges) this is a sign of an insulinoma. When the blood sugar is low, the pancreas produces very little insulin, and the values are high bacuse something else (an insulinoma) is still producing insulin. I have a medical research paper about the testing if you are interested.

    I wish everyone the best, and hope you have a healthy recovery!

    Nicolai

  36. Ok i think the site is acting up a bit i do get e-mails that someone has posted, but when i go to the site they are not there! UUmmm are you all getting mine? I hope so!
    Pamela

  37. Thank everyone for your messages. What a great website. I wrote for the first time on Jan. 9th. Have been having soo many problems with my sugar. I am on my second Endocrinologist and have a suspended drivers license because the first endo reported me to the DMV for my low sugar. This condition completely changes lives. It is comforting to see that many of you understand me.

    I really want to know if I could have an insulinoma but it is not showing up in the labs done during the 72 hr fasting test. Has anyone experienced this??? During test my sugar dropped to 37 and the lab didn’t get there in time. Then it dropped to 48 this was all in a 24 hour period. Had an endoscopic ultrasound the doctor saw something but my endo said it could be anything but NOT an insulinoma because my blood test don’t show it. I am soooo frustrated. I just want my doctor to care more and try harder!!!

    That fact, the constant low sugars, the fatigue and lack of concentration seem to point to the insulinoma that so many of you talk about. I really want to get to the bottom of it. I cannot function and it is hard to work and do normal things. Once my sugar drops under 70 I feel symptomatic. Today I ate and in on time my sugar dropped to 62 and I had a 54 reading Wednesday. My sugars are so random and it is so hard coming back after a low. I have to eat and drink something with sugar and then wait for it to rise before I can function again.

    I am going to USC medical next the top doctor that I am supposed to see is booked until March of course there is not urgency to see me. My referral is urgent but I can’t see him until March. I am looking into seeing another doctor because I can’t wait. Things are getting progressively worse. I have been having low sugars for years but never to this extent. It is depressing and hard to explain how I feel all of the time. I am not a complainer and I want to keep how I feel to myself but that could prove to be dangerous since my sugars drop so rapidly and I have a 3yr old. My husband has been awesome and supportive and I make sure I tell him my lows and how I am feeling because he has had to talk to the paramedics or doctors on my behalf many times now after I have become incoherent. Praying for answers and praying for you.

  38. Hi all,
    Fiona here again – just cos that man is concentrating on recovering – a bit too hard tho I reckon. He’s such a live-wire normally, being a concert pianist, teacher and ‘performer’ generally, that the operation and the aftermath are now proving very difficult for him psychologically and emotionally – and physically, but to a lesser extent I’d say altho I know he’d argue with that!

    He’s still doing incredibly well tho physically. He had a check up with the surgeon today.(Luckily our daughter had a day off so she could drive him!) All is going great as far as the surgeon’s concerned. No infection or any cause for worry at all. But surgeons aren’t there to take care of your well-being are they….

    It’s now 12 days after the op. (I can’t believe it’s that already!) and he was due to have the stitches out at the meeting today, but they’re not quite ready so he’ll go back next Fri to have another go. That’ll be 19 days after surgery but I suppose that’s not surprising really.

    The drain hole is proving to be a bit difficult – remember I talked about oozers and non-oozers before? Well his is still oozing – nothing nasty, but it is still doing it! And I’m now back at work and I have to get up at 5am to get to my teaching job across London and it would be best if he could shower before it’s re-dressed each day – but that’s such a terrible early hour for him to do that! Our daughter is also working so she can’t help either and he can’t change it himself because if he sits up then he can’t see it below his ‘insulinoma paunch’ (rapidly diminishing!) and if he lies down he can’t see it at all!!! So yesterday when I’d left at 6am ,he had his first day alone and he managed the shower brilliantly but then had to walk up to the GP to get it dressed again. The surgeon says it will only be another couple of days but it’s far better to let the ‘ooze’ out and cover it than let it form a scab and possibly prevent that natural seepage from escaping. Sorry! All a bit yukky!

    His other problem is ongoing pain – back pain mostly but also just unidentifiable internal pain and it’s this that is making him feel really very down. He takes his paracetamol and anti-inflamatories regularly but I think that with every day that passes, he thinks he won’t get it again and so when he does, he then starts to feel very down and a bit nervous that everything’s ok. I’m so sorry for him! – It’s not easy to watch him like that but it’s also good really tho, in a funny sort of way, because his natural optimism is with him every morning! And we try to keep upbeat with him! He lasts til around lunch time and then kinda slumps after that but I can’t get him to take things slower in the mornings because he’s so happy that he feels good and he wants to go on little trips or just do far too much – vicious circle!

    So we think he’s being TOO optimistic this early on. No one is expecting him to feel normal yet! Except himself – and that’s the problem. He’s finding it very difficult to accept how he is, and will be, for at the very least another week. Once the daily afternoon/evening pain starts going he’ll perk up and start listening to music again, reading, writing etc.
    I’m happy to wait til it happens naturally – there’s no pressure from anyone but himself.

    Sorry to all the new people in here! Don’t be scared! This is a wonderful forum which has been completely invaluable to John and me. John said himself today that even tho it’s all a bit of a drag at the moment, it’s still so fantastic not to have any sugar problems at all now and not worry that he’ll suddenly start talking drivel or go into a huge exhaustion. It IS worth going through with the surgery!!! In fact, it’s not just worth it – it’s essential for a normal life in the future. You just have to be patient with the recovery time – everyone who’s had the surgery in here says the same. I just hope my man gets the message soon!

    Very best wishes to all.
    Fiona

  39. Hello again to all who are on here, its such a wonderful thing that we can all share our experiences and its encoroging to hear the progress of John and several others since I have been following all the posts. Laura and Angie are so right Jo in as much that you undergo the 72 hour fast etc. However, I had an insulinoma removed(whipples) , only for a reoccurnece to happen mny years lter. As I have already had complex surgery I have been advised that further surgey will be really diffiucult and after consideration of the various and contradicting advice I have not had the second tumour removed. I have been taking large doses of diazoxide for a few years now and although my life is governed by the condition I do at least have a life, so surgery although the best for the majority and if I had not had the first one removed I would not be here to tell the tale. Insulinomas can become cancerous, but generally do not. I think the danger is the effect of severe hypos on your body. If you can get the insulinoma found and diagnosed get it removed as your life will be yors again. However, having had surgery for one and lived with another it is possible to do whatever is best for your case.I pray for everyone on here and wish you all my love.
    Janet

  40. Jo
    Laura is so right – also you dont know if the longer you leave it the more chance it could turn cancerous. Mostly the tumors are benign but they can turn. Also the larger the tumor gets the more it may complicate surgery. I actually thought it may be better to wait but when the surgeon told me where my tumor was and how tricky it was going to be it was crazy waiting and then definitely ending up with a whipple.

    Why cant I see Jo’s posts?

    Angie

  41. Jo, I also recommend you insist on the 72 hour fast, that way any randomness is gone. All they do is you don’t eat and they keep checking your sugar. If it continues to fall then they know you have a problem. Very easy and painless!

    Nicolai, as bad as the surgery is, the quality of life you achieve after the surgery is so worth it! You may not be having that many problems now, but really none of us know how long we have had the tumors. your lifestyle has a lot to do with your sugar level. You may be doing things just right now so that the sugars are not getting low. If that stops (whatever it may be), then you may experience the same awful things many of us have gone thru. Also, the tumor will continue to grow, bigger tumor means more insulin which also leads to more symptoms. I would strongly encourage you to have the surgery. One “funny” thing about this surgery is you never know what you are going to get until they open you up. I was told I had a 50% chance of a whipple, but I was fortunate to get an enucleation. My doctor also does not believe in drains because he feels they cause more harm than good.

    Good luck!

    Laura

  43. AAAh Ive just written a huge reply to Jo whose post has disappeared and my one has not been displayed and I cant remember everything i wrote in it!!!!!!!!

    Whats happening?

  44. JO

    This is odd as I have received a post by you via email but I cant find it on here – is my screen missing something?

    You asked about having tests done on a good day – I was always worried about not finding the right result – not finding the tumor on the scans etc etc however I think they do so many and look at all the results together something will always show up irregular and they wont dismiss you. Many people on here have spent years trying to prove or find the cause of their symptoms and usually something will find it. I would imagine they will send you for a 72 hr fast test to test insulin and glucogen levels.

    When you have a hypo and your blood sugar drops your liver kicks in and produces glucogen which is the bodies emergency reaction. this temporarily raises the blood sugar until hopefully the body gets more glucose.

    When you have a 72 hr fast they have to test your blood quickly before that happens.

    Looking back at my posts at the beginning of this site i had actually just been through a lot of the tests and they were much more detailed than what I can remember now. In the first few posts at the beginning of the site we discuss quite a lot of symptoms and procedures.

    I had the 72 hr fast, an MRI, CT scan, calcium infusion and eventually an endoscopy. They had already found it on the first scan but they had to prove it was what it was then the surgeon wanted the best information he could get.

    I had good days and bad days and could not find any reason for the difference, weekends I was always low but as I work from home on my computer there was no difference really to my week.

    They reckoned I had had this for 10 years while it was growing as i had had mild sugar problems for some time. I had two children and nothing showed up until I started swimming every morning. That seemed to have pushed me over the edge, my body could not cope with the exercise and maintain the low levels that it had got used to so thats when i started having hypos.

    There is always someone here who has something to add and help so good luck with everything.

    Angie

    I gather you are in the uk? because of the way you measure your sugar levels. Just ask – if you are worried and see what they say. Make sure you are at a hospital that knows what they are dealing with.

  45. Stacy
    welcome to this site! If i were you i would get a second opinion. My first endocrinologist had 5 years of blood work and every time i went to her she only made me feel like it was all my fault, and that it was my eating habits that caused my hypo attacks, even after having a seizer at a grocery store while with my 2 year old daughter at the time! I finally had enough and started researching hypoglycemia and found this web-site, and then really pushed a second doctor for the tests! You have to be persistent! Keep your faith and my prayers are with you for a quick proper diagnosis!
    Michael and Heidi,
    your story sounds all to familiar… so familiar it brings all the bad memories back of my illness!!! Living with a ghost is a good description! My husband always wanted to go to dinners, once in a while travel, business functions, and all became to stressful and scary. I could no longer enjoy anything, not even a lunch and shopping with friends! To Nicolai too….. (love your name! my sisters name is Nicola!) my insulinoma was in the head of the pancreas and was possible that it was going to be a laproscopic surgery, but decided to open me up… i have no regrets of surgery. my quality of life is that of a normal healthy person. With this illness i think it will only progress. Food will only keep you from getting the lows, but as time goes on, it will take more food. carbs, sugar to cover all the insulin thats being released in your body!! It only takes that one time not to have enough food to where you end up in the hospital or paramedics by your side! Yes, surgery and recovery was hard, harder for some of us, but it is so worth the chance to be healthy again!
    Jo,
    I had so many good days and so many bad days… you just never knew what the sugar levels would be. Explain your concern with your endocrinologist, ask for the 72 hour fast! BE PERSISTENT. Best wishes to all the newcomers and good luck!!
    Jackie,
    Less than a week for you to begin your new life. I am so excited for you. I know you will be writing as a new person in no time!! A healthy person!
    Pamela

  46. Hi Nicky

    Thanks for the welcome. We have never used the glucagon, it was prescribed by the doctor for a last ditch emergency solution if Mike collapsed and we couldn’t get immediate emergency help quickly. We have used the glucose tablets more than once, but we usually notice when he is going down to a hypo state and I can get him to drink OJ asap. I am very good at watching him these days. Mike doesn’t always notice, but I sure do! It is amazing how quickly he tires and drops when he has done any exertions.

    Bye for now,

    Heidi

  47. Hello again,long time no speak ha ha!
    I was just reading a few of the new comments and wanted to add my 2cents worth.
    Hello Heidi and Michael welcome to this great site.It was good that you got to go on your European hoilday but what concerned me was the use of glucagon by Michael. Not long before my surgery I was having so many hypos without warning that my doctor suggested using glucagon. I had heard of it before but I asked her to tell me exactly how it worked and what it was. As she scrolled down the information leaflet that comes with any medication that you get she read ” contraindication ; not to be used for insulinoma” maybe you should ask your doctor/endocronologist for more information. She explained to me that the medicine does give you a quick stabilisation of blood sugar but can then cause a sudden drop in sugar that can cause unconsciousness.

    Hi Nicolai, I have had both a laporoscopy and an open surgery for this condition.Both times I was told to be prepared for either. The first, a laporoscopy, removed the tail of my pancreas and I did have a few post op complications with infection and fluid leakage. The second, and open surgery, was a little harder to recover from because you end up in intensive care for a while. Its hard to say one is better or worse than another because so much can happen at any stage. I must say that I dont regret any of it, I’m only 35 and I didn’t want to go on living so unstably for my own sake and my family’s.

    Good luck again to all having tests and surgeries my thoughts are with you
    Nicky x

  48. Hi all, I’ve just been catching up on everyones progress.
    Congrats John on a great outcome and to your family for getting you back to your old self. All the aches and pains go with each passing day and one day you’ll wonder what it felt like to be sore at all. Obviously it sounds like your bowel was left intact because you were eating again so quickly! My husband and I laugh now about my “cabin fever” experience over vertually being starved for the first 5 or so days. I was on nothing in intensive care except a sip of water and then from the 6th day they gave me a chiken stock cube disolved in water for brekfast,lunch and tea ( ooh yummy) I felt I was going nuts but it was one way to shed some of those excess kilos. Having my gallbladder out added to the digestion troubles but the told me that the risk of colicystitis ( sure I spelt that wrong) was high with this kind of surgery and that it was easier to remove it at the same time than to get infection complications later and risk another operation.
    Now I can eat anything I like WHEN I LIKE.(except fried chips)
    I’ve just arrived home after a weekend away with my younger sister which we haven’t done for years. It was such a great time. We went to Melbourne and just slept in, saw a 3 hour movie, skipped lunch both days and had great meals those nights. The best thing was shopping without having to stop to eat all the time,joy!
    I really do have my life back after wondering in and out of doctors surgeries and med. proceedures for the last 3 years. Life is good.

    Good luck to everyone about to get their lives back, be strong and be well.

  49. Thank you all for your recent postings of recovery. I have a patient/friend (Geraldine) who was diagnosed with insulinomas ??MEN. She calls me every so often to share experiences, as I was the first and only person in Gibraltar known to have an insulinoma. I told her about this website and I think she may have read recent comments of positive outcomes after surgery. She is gong into hospital on Sunday for investigations with a strong posibility of surgery. She is quite scared but has a positive outlook of being symptom free after surgery.

    Jackie, I am praying for you – I know it seeems like eternity prior to surgery but once its all over, you’ll look back and believe it was all worth it. i got my life back after surgery and I can’t believe its been five years since. I can travel without the fear of collapsing and waking up in a foreign hospital, i can dance and exercise as much as I want and I don’t feel like a recluse with someone watching over me all the time in case I had one of those funny spells. Be strong and chin up! The only way is up, my girl!

  50. Pamela, I go in the day of surgery. I do the pre-op on Friday so will have more details then. I am tired of the wait now. It seems to be stretching out too long. At first I was like “no way”. And now I am thinking “why not tomorrow”. Part of the adjustment to all of this I think. My sister and my oldest daughter are coming to help out after the surgery. My sister is a nurse too and I am so glad she will be another set of eyes while I am in the hospital. My surgeon seems to be really on top of things and I am glad to have found her. It will be interesting to see what other symptoms I am having and not relating it to the insulinoma. I have serious fatigue and I am having trouble thinking. Horrible. Hope all that clears up. But, in reading some of the others experiences I think mine has not been as bad. Take care and thanks again for all the information.

  51. Hey everyone!
    John so glad to hear you are recovering so nicely! Like you and Angie said it is so crazy something half the size of my fingernail gave such life-changing, dangerous, grief! i think back at how a surgery could cure someone who had suffered years, some of us decades. Jackie, it is scary facing surgery, but i think these insulinomas tend to get worse with time, as mine did. It got to where eating was not enough…. i had to constantly eat and drink dr. peppers and juices, not just one, sometimes two or three at a time. And as Angie said, you will probably discover that you had a-lot more symptoms than you thought. I had headaches, blurred vision, extreme fatigue, and often could not think clearly. Excluding the blood-sugar problems, i feel so much better over-all! Will you be admitted the day or night before surgery? I think many of us were that way to prevent any hypo attacks before the surgery.
    Pamela

  52. Jackie

    When I found this site I had been surfing the net trying to find any info on insulinoma, I have to have information about things and wanted to find everything I could. All I found was insulinoma for dogs and ferrets. When people started writing on it, it was great and I met one of the girls who was “up the road” in Brentwood and we still see each other now. Helen helped me through everything as she had been through it all a year before. With her support and this site I felt I could talk to people who really understood. We still compare notes now!!

    I just want other people to have as much info as possible and try to help if possible. Many things I did not have to deal with like a lot of people on here and I was lucky to be diagnosed as soon as we realised I had some sort of problem – I thank my doctor for that who was really on the ball.

    Anyway good luck – oh by the way after your op you will probably discover you had more symptoms than you realised, I found that the problems I had reading sometimes were down to low blood sugar and my eyes were oversensitive to bright lights! The only downside is I never really lost loads of weight but Id been fighting not to put on loads throughout (and for years before) so I could have been much much heavier anyway.

    On that note im off for lunch!

    Angie

  53. You guys are incredible. John, you expressed all the doubts I have been having about going to the hospital with to all outside appearances perfectly normal just to be brought down to a painful mess. It has entered my mind more than once why do this when all I need to do is eat. Then Angie shares the other part of the family that looks at you strangely and wonders are you having a “moment”, when I drop anything they make me sit down, my husband calls if I am late coming home from work. As wonderful as that is it is pretty tiring. So, next week I enter that tunnel back to normalcy. This group has been a true blessing to me. Through your willingness to share my questions are answered, my fears put to rest, and I don’t feel at all alone with this. I hope that one day I can give a margin to someone else that you guys have given to me. Take care all of you. I guess I am just feeling pretty emotional this morning.

  54. By the way in my earlier post about sleeping – I just had a ‘insulinoma moment’. I only sleep horizontally now as I kept falling over!

    Angie x

  55. John

    Glad to hear you are back home and on the mend! Its all good fun!!!

    I never really could get to grips with the fact that so much fuss was made over my insulinoma, I had lived with the problems for so long it had just been “me” so when it was diagnosed I sort of felt “how did I get here!”. From being healthy and very rare visits to hospital and doctors all of a sudden I was going in for major surgery!

    I know what you mean about the feeling that the hypoglycaemia seemed a small symptom to cope with against the major op, and when I was on the diazoxide coping with the water retention and the other symptoms it seemed pointless. Its when you read bits and pieces on here that you realise what extremes some people are suffering from this tiny hidden tumor and when you are told they could never know when you would start having those symptoms and start passing out yourself that made me realise just how life threatening it was.

    A few people around me still think I was overdramatising – and Im not a drama queen in the least – and they still dont have any idea of what it all meant. All of my close friends and family were brilliant so it shows you who really cares when the chips are down.

    Even now after almost two years I sometimes think “oh ive missed lunch!” and its almost a surprise to remember what it was like before. Its incredible that the body just reverts and acts as if nothing was ever wrong!!

    Try not to laugh or cough and dont sneeze whatever you do!!!

    Best wishes

    Angie

    Good luck to everyone about to cross over to the other side!! Life is so much less complicated and worth all the pain – I think! –

  56. Well hello there, all of you! John here – husband of the wonderful Fiona who has been keeping you all up to date with my procedure and progress.
    I have indeed come through this, one lucky man, privileged, positive, determined. Initially, recovering from the surgery, I asked myself why I’d suffered so much for such a small insulinoma, even to the extent that I was angry at having been ‘forced’ to go through with the op at all. I know – irrational and wrong – but with this condition and no side effects, the only problem beforehand was the hypoglycaemic stuff and the temporary insanity and weirdness, certainly no pain. Now it was all pain! To feel so enfeebled so suddenly – just not fair, is it?
    This silliness soon passed as I got proof of steady blood glucose levels and diminishing pain, increasing strength and ability to take longish walks about the hospital. My pancreas was doing its job properly, my scar was clean and healthy, my drain was removed, my appetite increased – all this within four/five days. I no longer resented it – now I feel only triumph.
    Home feels sweet and familiar and non-threatening. You have to find out how to sleep comfortably, how to cook easily, how low to store the plates for easy use, how to do without booze and fags, how to get to the doctor’s surgery for follow-up (I am doing that today) and how to shower safely and comfortably.
    I can’t wait to get visits from friends – to get less discomfort – to think about practising the piano at full speed and strength – to only having gluten-free demands in stead of all the sugar demands – and to return to concert-giving and teaching. Meanwhile – one day at a time…
    Jackie, good luck next week. You have so much support from this forum and we shall all be rooting for your swift recovery.
    To anyone else worried, anxious, unsure which way to turn, let me assure you – there is light at the end of this rare tunnel.
    Look after yourselves – I shall be reading your thoughts daily with pride and compassion and increasing energy!
    John

  57. Hi Fiona & John,
    I’ve been reading on your recovery. I also went to London’s st Mary’s and Hammersmith hosp but no luck there so I had my surgery in Cordoba – Spain which is closer to home (Gibraltar). My surgery and recovery was similar to yours. I have a large scar too and found it hard to sleep at night. It felt as if my upper back was breaking especially towards the left side. It was no problem sleeping in the same bed as my husband but I had to sleep upright propped up with a few pillows. I bought myself a backrest from the Betterware catalogue which I found helped a lot. I hope you have a speedy recovery and guarantee you’ll feel better day by day. Its incredible!

  58. Excellent news about John’s speedy recovery and no complications. My family put a bed downstairs as it was the summer and I was able to shuffle into the garden. Like the others who have posted I slept sitting up with lots of pillows. I recall I found it really difficult and painful to pull myself up into a sitting postion or to get out of bed. I had to rely on people giving me their arm to haul myself up by in order to take the strain off my tummy. I also held my abdomen tightly with my arms crossed or gripped a cushion across the wound when coughing or sneezing. Ouch! I remembering sleeping a lot for the first week and being amazed that even though I wasn’t eating I was acting fairly normally. Like others have said the not having to think or worry about eating takes some getting used to. Again glad to hear all is going well.
    Take care,
    Jane

  59. Fiona,
    I am so happy to hear John is coming along so well! You and your family will have a whole new life now that Johns sugars are back to normal! Its amazing how the difference in the sugars and health and well-being of someone and their safety around the clock is such an impact on everyone. My husband used to worry if i was in the shower to long, or if i made a mistake talking, or if i did not answer my phone…… because he was worried i was having a hypo attack!
    Now, i run around endlessly, eating only when i am hungry, not because i had to. I have a feeling you will back to teaching and your concerts in no time!! Especially with The help of Fiona at your side! I am happy to hear another success story! Also, I slept in the same bed with my husband, but i think like Angie said, it depends on your sleeping habits. Aside from the snoring….. my husband is a pretty sound sleeper and does not stir a-lot. I had to sleep with a-lot of pillows and on my back for quite some time. Everyone is different, but i had a-lot of back pain. Even now my back tends to give me some problems. After a few months i was able to turn to my side. Keep us all posted on your progress! Best wishes!
    Jackie and Sue
    Thinking of you both and counting the days for you new lives to begin as well!!
    oxox Pamela

  60. Fiona

    I meant to get back to you about sleeping….

    My husbands slept in our spare bed for about a week as any movement he made disturbed me! I was also worried about him knocking me whiile he slept but I suppose it depends on your sleeping habits and what you are happy with – he may want your comfort and be happier with you near.

    I also slept on a lot of pillows as I couldnt lay vertical for a while – cant remember how long. I couldnt get up without them!!! I must say I slept in one position for ages as I found it very hard to move. It took a long long time before I was able to sleep on my stomach and to turn over without feeling the muscles ache.

    I must have very weak abdomen muscles as they have taken ages to repair. I can feel them now still if i lean backwards but my yoga and swimming has really helped.

    Good luck and wish him well on coming out!!

    Angie x

  61. Hi everyone and especially Jackie,

    This should be my positively last word here because John is definitely coming out of hospital tomorrow night – hurrah!
    I arrived today just as the drain was about to be removed and it was easy and painless for him. He asked if would hurt, of course, but the nurse said no – you’ll feel better without it and sure enough he did – immediately! It is long though – about the same length as the wound itself – 7/8 inches. John was amazed!

    So Jackie, I really hope your surgery goes as easily as it possibly can – it IS a big deal, yes, but it’ll be only 9 days since my lovely husband and I walked into the hospital to begin this adventure. I did stay with him in the hospital the night before the operation and I know that was a comfort to him, and me, but even if that’s not possible where you’re having your surgery, your spell in hospital WILL go by! Just picture yourself walking back into your home after it’s all done. We’ve always done that if either of us has been going off to do a difficult concert and it works!

    Angie – thank you for the tip about the towel for the car seat belt! I mustn’t forget it….and, reading back over your very helpful posts, he did have an attack of the glums after he came off the morphine – thanks for that!

    The last thing I’m still worried about is sleeping in the same bed as him – please can someone tell me if it’s a good idea or a really bad one? I’ve made up every bed in the house because I just don’t know what those first days at home are going to be like. I think he’ll be quite nervous because there won’t be a nurse on hand to help
    him whenever he calls – any advice gratefully received!

    Very best wishes to everyone.
    Fiona x

  62. I am having my surgery on Jan. 28. Has anybody had their surgery performed at a New York Hospital ?I amgoing to have it done at Columbia Presbyterian. I am finding it unerving to not know exactly what will be done before they operate. It will either be an enucleation or a pancreas resection. How did you deal with the stress of not knowing what will be done until you wake up from surgery?

  63. Hi everybody, my name is Heidi

    My husband, Michael, (age 49) is suffering with an insulinoma and we are progressing slowly though our medical system to get ready for his operation. We live in a smaller city in northern BC, Canada, and we have only limited access to the level of expertise needed, so we have been flying back and forth to Vancouver (800 km south) to get to the appropriately knowledgeable specialists. He has had 2 CT scans, as well as an MRI, and several rounds of blood tests, and they tell us they know he has a tumor, but haven’t actually seen it yet. At this point we don’t know a surgery date, but they have now found the ‘hot’ zone in the head of the pancreas during a calcium stimulation test run in November 08. He is scheduled to see the surgeon in Vancouver on Feb 3rd 09 and will then be given a spot on the surgical wait list. Interestingly, our medical system considers insulinoma to be an elective procedure, as the condition is ‘manageable’, or so they say. However, they do agree that it is imperative it gets removed with some urgency. The surgeon is supposed to be very knowledgeable, but is like talking to a grizzly bear. Should be a charming guy then!

    We have had an interesting journey with this illness, although maybe not as dramatic as some of you, culminating in my calling the ambulance on April 17, 2008 because I thought he was having a stroke! He was so lethargic and talking gibberish, when he spoke at all. The paramedics recognized it as a sugar problem right away, but assumed he was diabetic and kept asking me about his medicines (he takes nothing). The first blood test was 1.7 but after IV Glucose and a two-day stay in emergency, he was sent home with a glucometer and instructions to not let his blood sugar get below 4 by eating 6 times a day. They did all kinds of tests while he was in hospital including a fasting test (he got down to 0.7 in 13 hours). The one thing everyone said was that they were shocked he hadn’t gone into a coma. Luckily we had a local internal medicine specialist with 35 years experience who told us it was a one in a million occurrence and he had only seen a few cases in his lifetime living in the north of our province, but that Mike should come through ok once the tumor is removed. Dr. figures he has had the tumor for at least couple of years, and he had gotten used to having low blood sugar and feeling down. He has been putting on so much weight the last 18 months, I had asked him to go on a diet with me since we could both afford to lose a few pounds. Who knew this was a symptom of a serious illness! That is apparently what set him off – reducing his intake by 300 fewer calories a day tipped the scales and he finally manifested the crisis. Now we understand why he was so tired and grumpy for this last school year.

    We had a major trip to Europe planned for July and August 08, to pick up our 15 yr-old son who had been in Germany on a school exchange, and travel around to celebrate our 20th wedding anniversary. Drs all recommended strongly that Mike not go on this trip as he would be likely to get unstable and he couldn’t get travel medical insurance, with a pre-existing condition. Well, this trip has been planned for the last 5 years, and he eventually decided to go anyway. Since we have the tools to manage his situation food, juice, glucometer, glucose tablets and glucagon injector, we did decide to go. While we didn’t get to everything we had planned, due to Mike’s needing more rest every day, the trip went quite well and we have wonderful memories of our time traveling as a family to such interesting places. It did, however, delay the next step for testing and we are paying the price now with longer wait times for everything.

    He is an elementary school teacher and is on his feet for hours every day. At this point, Mike works 4 days a week, but his sick days are getting more frequent as he gets exhausted so quickly. Luckily he is he has an understanding boss and co-workers. (these folks keep an eagle eye on him at school and make sure he is doing ok, for which I am very grateful).

    It has been very interesting reading other peoples’ comments on how their surgery went and the recovery times etc. Once Mike has surgery in Vancouver and is released from hospital, he will be flying home (driving takes 10-12 hours in winter conditions) and we will see how things evolve. I can only describe this situation as living with a ghost. Mike is so tired by the end of workday that he is very quiet – sits watching TV or reading. A short dog walk around the block is too much sometimes. He just isn’t participating in our family life much any more. We don’t blame him, as we know how things are, but we will sure be glad to have the real Michael/Dad back. We have lots of snow in the winter and I have done most of the shoveling so far – he just can’t right now. Oh, well, I need the exercise too.

    So, I will keep checking in on this blog to see how everyone is doing and we will post our updates as they happen. It is helpful to know that others are getting through this challenge. We know he won’t be having laparoscopic surgery, but we would prefer not to have the dreaded Whipple if it can be avoided.

    Thanks for being out there and letting us know how things go – it helps you to not feel so alone with this ‘interesting’ problem!

    Heidi

  64. Sue, I am having a half moon incision side to side to make sure to have good visualization of the tumor. It was found after a CT scan. My surgeon is planning to enucleate the tumor and then do a internal scan to make sure there are no more. She said the laproscopy would have been possible if the tumor had been on the tail of the pancreas but not advisable with it located on the head. I asked her to look at my gall bladder and remove it if there are problems there. The hospital stay is planned 3-4 days and would not be surprised if it is longer. Can’t wait to not worry about the hypo events and the morphine pump. You and me both are going to do great and not long before we can start living a normal life again.

  65. Hi all,

    Thank you for sharing your experiences. I am a 31 year old male in Denmark, and I just yesterday got confirmed that I have an insulinoma. It was found using an endoscopic ultrasound, which I understand is generally the best way to find insulinomas. They found it within a couple of minutes, despite it being only about 1cm (0.4 in) long. I have also taken a CT scan (do not have results yet) and will be taking another type of scan in a week (“Octreo”-something).

    My syndromes haven’t been as severe as what many of you describe, but I have had problems with hypoglycaemia for about 6 years. As long as I eat many small meals, I usually get through the day without problems.

    It’s a quite scary reading about all the problems that can arise from surgery, and not least the long term affects if the surgeons need to remove more than just the insulinoma itself. Since I am not drastically affected in my everyday life, I’m wondering I if really want to go through all that.

    One thing I’m unsure about is open versus laparoscopic surgery. From what I have read laparoscopic surgery sounds much quicker and easier to recover from. Unfortunately, they do not offer this in Denmark, so I would probably need to do it abroad (and pay for it myself). Does anyone have some good information on the pros and cons of the different operation techniques?

    Good luck to everyone,
    Nicolai

  66. Jackie,
    I am scheduled for surgery on Jan. 28. I Hope that your surgery goes well. I am also very nervous, but will be happy to not have to worry about hypo attacks any more. My insulinoma is on the head of the pancreas. Has your surgeon told you what kind of surgery he will be doing? Mine told me that there is a small chance of having it enucleated and a greater chance that I would need a pancreas resection. Did you have an endoscopy ultrasound?
    For those of you who had the surgery, approximately how long was the recovery? I would like to thank all of you for sharing your experiences. IT is really very helpful. Before reading your blogs i knew very little and it helped me to know what questions to ask. Best wishes to those who are going for surgery and a speedy recovery to those who have had it.
    Sue

  67. Hi Jackie,

    You’re going to feel so great once your Insulinoma is out! My kids and I visited John this evening and they hadn’t seen him for 2 days and they were thrilled at the difference in him. For a start he got straight up out of his chair and greeted them with a big kiss. Then he proudly showed them his scar and went for a walk with Maddie! He told me that after I left at lunchtime today he had a bout of the glums and slept most of the afternoon but when he awoke he felt good again! He’s still not eating a lot but it doesn’t matter now! Gone are the dreaded cereal bars or am sandwiches which he forced down because he was scared of having a hypo. And his blood sugar remains the same even tho he’s only had a few mouthfuls of whatever. That’s really liberating for him!
    Just as we were leaving his surgeon turned up and there was instant ‘respect’ Haha! My daughter had never met him and she was fascinated by his calmness. We asked about when the stitches would be taken out (or running thread actually – there’s one vertical stitch down the middle and one long stitch from end to end with a little plastic ‘bead’ on each end which means it all comes out in one go) and he said about 10 days. The drain is still attached and he said it’s possible that John would leave with it still in. But I obviously showed a bit of dismay and said I wouldn’t sleep easy in the same bed if he still had it in.
    Can anyone tell me what they did with sleeping arrangements after the op? Is it safe to share a bed or should I sleep in another room/bed?
    I was suddenly aware today when you said you were hanging on every word that I might have said something that upset you – I really hope not! And I know that you’ll be the next one in this forum to pass on your experiences. Everyone os different tho!

    I’m really looking forward to when John comes on here himself – won’t be long! Then I’ll shut up…..hehe.
    Fiona xxxxxxxxxx

  68. Hello Everyone-My name is Stacy and I am 33 years old.

    I just spent some time reading several stories. I felt emotional as I read because I was listening to people that I can relate to. I have what my doctor calls Reactive Hypoglycemia. I have spent the last few days in the ER due to low blood sugars and I had a seizure for the first time in my life Wed. Jan 7, 09′ due to low blood sugar. My doctor thought I might have an Insulinoma but now says I don’t have one. I have had the 72 hr fasting blood test twice. The first time was not successful because I got very sick the first night because the drop in my blood sugar caused me to get nauseous.

    The second 72 hr blood sugar test was performed in Nov. 2008. My sugar dropped to 48 in less than 24 hrs, but the lab did not draw the blood in time. By the time the nurses came to recheck I was back up to 60. My sugars go up and down all day. In few hours my sugar was back down to 37 and when they tried to draw my blood I was so dehydrated that my veins began to roll and they couldn’t get the blood quick enough. The lab was contacted and it was determined that my blood sugar was 48 and it was low enough. Again my doctor said the blood test does not show insulinoma. I had an endoscopic ultrasound at UCLA medical center and the doctor saw a growth at the head of my pancreas. I am confused and so tired of the constant low blood sugars and being down in the dumps.

    Does anyone know if there could be an insulinoma but blood work does not show it? I really need help. I am a Christian and my faith in God has kept me strong. I have a husband of eight years and a three year old and it is do difficult to be the best me I can be. I appreciate this website and i am glad I found it today.

  69. Fiona, thanks so much for keeping us informed about John. I know it will be great to get home and be on the road to complete recovery. I am hanging on every word since my surgery is in two weeks. Pamela, thanks so much for your phone number and I will be calling soon just to say hi and to talk about stuff. It meant alot that you are willing to share your number. Jane, I am glad you are doing better too. It is so interesting to hear about the treatment practices in England. I am scheduled for the big incision because of the location and they are going to look at my gall bladder to see if it needs to come out too. Hope you all have a restful weekend.

  70. Hi again,
    Well I’m back from the morning visit and that internal pain did stay with John last night but the ‘dreaded night staff man’ he’s talked about was completely wonderful apparently! After a morphine injection in his bum and a clear up of drain fluid – (it seems there are ‘oozers’ and non-oozers’ with drains and both are fine) – he slept like a baby for nearly 4 hours.
    His blood sugar is now regularly around 6.9 (English numbers) which is fantastic and the only thing with his general health is too high blood pressure which the consultant worried about way before the op, and sure enough it hasn’t come down enough since the op so he’s on pills for that. But he is nearly 60 so it’s not that surprising even without the Insulinoma.
    We went walk about this morning and, on a whim, decided to visit the High Dependancy unit to say thanks and hi to them. One doctor recognised him immediately but the main nurse who’d looked after him all night on Sunday screwed her face up, obviously trying to remember him! Very funny really! But they were pleased and surprised he bothered to visit them.
    So now I’m gonna have a nap – it’s all hugely exhausting for the rels, this business, but I hope he’ll be the same cheerful self he was this morning when I go back at 7pm.
    But I won’t expect it! Better not to, then you’re not worried!
    Best wishes to Angie, Jane and everyone.
    Fiona

  71. Hello John and Fiona,

    It is good to hear that John is doing well and of course better already from not having the insulin-making tumour causing him to be ill at unpredictable times.

    I had many similar experiences to those who went NHS: in hospital, before, during and after my stay. I think I put it all down to people’s inexperience of the condition. However, I have to say that it was unnerving to think that had I not spoken up on several occasions that I would not have got the correct care. People are familair with diabetes but obviously not insulinoma.

    Where I had my operation it was the standard procedure to be on the high dependency unit, the medium and then obviously the low before discharge so I don’t think John was incorreclty on the HDU, after all he had just had major surgery. I think a lot of the staff in the NHS are agency or temporary and it never seemed to be the same team and some of them were quite unsympathetic. I think they get immune to illness and people suffering pain.

    I was seen fairly quickly once diagnosis had finally been confirmed and I was sent to a large teaching hospital where they had experience of doing the op. The surgeon gave me a date there and then from his little pocket diary and rang me in the evening to talk to me about why removing the insulinoma was difficult but essential. They did tell me the worst scenario, the Whipple, which is what I was down for but although I had lots of pancreas removed as they also found a small cyst as well, the Whipple had not been necessary. I was only able to eat jelly and drink hot chocolate for about 3 weeks!

    John now needs lots of rest and recuperation in the warm. And as you say most insulinomas are benign. Keep us posted.

    Jane

  72. Fiona

    I meant to say – the food in the London was awful! I lived on the yoghurts and fruit, the toast in the morning and bits and pieces of the meals, the odd dessert was ok! Spaghetti bolognaise was only a dream!!! And vegetables – they dont have them do they????

    We – I made a few friends on the ward – used to get there first as we were the most mobile, trailing our drains, to make sure we got a choice. Looking back its hilarious!

    My friend had to go home in the end as they couldnt supply the meals she needed to get better! My friends who used to visit looked on in horror most times if she arrived at meal times!

    Although I cant fault them generally as I was diagnosed and dealt with very quickly! I had never had much hospital experience until then and it really opened my eyes to the problems of the NHS.

    So much of it had its funny side I could go on for ages – but I wont!!
    Bye for now.

    Angie

  73. Fiona

    It is the stress that gets to you !! I thought I was going to die one night of a neurological disease because my body kept jumping every time I tried to sleep – It was stress and nerves about going home now I look back on it! The abdomen pains were brought on by a bit of acid – probably more than normal but then my anxiety!!

    We do things to out bodies without realising it! I must have looked like a real neurotic at times. However i told them I had a water infection and it took them 3 days to believe me – by that time I had a temperature of 39.7 and I really felt ill! They eventually gave me some antibiotics!

    I feel that if you read some of the problems others have been through it helps prepare you for what could happen and that it is ‘normal’ to have the odd complication without going in to mass panic.

    I was told to make sure I had an epidural administered during the op and to make sure they had a morphine pump set up ready, but I didnt and of course i needed it.

    Its easy afterwards!

    Has he been given a rolled up towel to push onto his stomach area? It sounds funny but if you laugh or cough it can really help to support the operation site! Also when in the car it is useful to put under the seat belt.

    Just a few little gems people helped me with!

    Keep in touch

    Love Angie

  74. Hello Angie,

    John is in King’s College Denmark Hill so it isn’t a million miles away from where you had your op done!
    I can’t believe they didn’t tell you about your gall bladder – it’s that kind of thing that makes all this so much more frightening that it need be! Ok so you’re alright now, but it’s so unsettling isn’t it? John’s problem has been that the catering staff have no training in Coeliac disease – none. So we’ve had to tell them in no uncertain terms that for him to eat even a tiny bit of gluten is positively dangerous. And we both think that a hotel style food menu is totally inappropriate for post op patients too – lamb chops, Greek salad, Spag Bol are on the menu! We did tackle the Sister about it and she said the old days of ‘invalid’ food are long gone and people won’t eat it so the policy is to allow patients to choose whatever they like. Daft. He had a bad tum last night and tonight he’s suddenly got internal pain – It’s so odd how things change so quickly – I was only with him 4 hours ago and he was fine. I think he gets nervous about the night staff tho – and the whole night thing in general. All his favourite nurses go off duty and I think he gets anxious about all those hours ahead of him. It happened yesterday and developed into tum trouble but today he’s got there before they change over at 8.30 so I hope he’ll be sorted out with proper pain relief before they go off.

    This is terrible! My last post was intended to give people encouragement but now I’ve blown that! But not really – I still stand by what i said earlier, it’s just that everybody has to learn to be very flexible and not get too fixed about things. I’m sure John will be ok tonight – it’s just the next thing in his recovery and tomorrow he’ll say ‘Oh that – yes – the pain went off by about midnight’ . In the meantime I’ll no doubt wake up with instant fretting at about the same time….ah well. I love him really!

    Best wishes,
    Fiona

  75. Dear Fiona

    I have been keeping an eye on the posts you have been writing about John. Glad hes coming along nicely!! I was in Barts and the Royal London for my op nearly two years ago! You seem close as you are in London too if you know what I mean!

    Although I knew I was having a full open surgery i was also expecting a whipple but hoping against hope I wouldnt have to! I was lucky and my surgeon manged to remove just the tumor. Mine was in the head near a vessel so he didnt think it was likely they could do it but as I believe they give you the worst case scenario rather than get your hopes up and it be worse than expected! Sorry Im repeating myself from an earlier post!

    I was so relieved I had escaped a whipple not much worried me to start with.

    I had a few freaky things happen, my epidural failed during my first nite in HDU which left me with no pain relief and I later I suffered a panic attack that knocked out all my electrolites and co2 ( still not really sure what happened but it was very scary).

    Anyway what is surprising is how much you improve every day – you actually feel the improvement as your body recovers – its quite mad!

    I suffered from bad stomachs for a while and was concerned I would have to take supplements but it did settle down. I found out at my 6 week out patients that they had removed my gall bladder which explained it – yes it would have been nice to know at the time!!

    I suffered from bad indigestion for some time but after a few mega ant-acid tablets from my doctor Ive never had it again.

    I have learnt that you must know as much as possible when dealing with the NHS – several times it was my knowledge of my condition that stopped them in their tracks. The house doctor was going to put me on an insulin drip overnight before my op! She hadnt read my notes and believe me I told her in no uncertain terms she was not going to!!

    If John thinks there is anything to be worried about dont hesitate to make it known, sorry! you probably will anyway, I just feel strongly that we are not told enough sometimes as they take it for granted that we should know it anyway.

    Good luck and tell him to take it slow!!!

    Best Wishes

    Angie

  76. Hello!
    Having got almost through this process with John, at least the surgery and hospital bit of it, I feel I can now look a bit more outwardly and I want to send anybody who is facing surgery – and their families, a message that although it’s horribly tense and worrying before it, and after it ,for a few days, recovery can be amazingly fast! I know it’s not the same for everybody, as is clear from this forum, but because John has had a very lucky ride indeed so far, I think there’s no harm in saying it!

    In the week before the op we were lucky enough to be able to speak to a colleague whose friend had gone through the Whipple and come out the other side a changed person and, although she scared us a bit more than felt comfortable, it was good to hear what he might go through. The surgeon did the same of course – they do give you the worst case scenario! Actually, I’m still cross that the surgeon didn’t tell us about the ‘open eneucleation’ possibility which is virtually what John had in the end. He had to take a very small bit of the head of the pancreas because of the position of the Insulinoma but only a tiny bit, which means that John won’t be diabetic. Woohoo! Strangely, John isn’t cross! Possibly because he’s just relieved it’s over. But in the week before the op, we really thought it could ONLY be done by keyhole or it would definitely be the whole Whipple – no middle way. That was very scary indeed and after waiting past the ‘keyhole’ max 3 -4 hour operation time’ on Sunday and still no news, my kids and I assumed he’d had to have the whole shebang out. Not funny.

    So – apart from a bad stomach last night (day 3) with a bit of nausea and a bit of back pain from lying flat in his back for too long, his recovery is going just great, mentally and physically.

    Only two things left now – the drain out and the analysis of the Insulinoma itself. But we’re assured that most Insulinomas are benign and I believe them!! Have to.

    I hope this is of some reassurance to anyone about to go through surgery, or anyone who is still in the investigation bit. We intend to re-start 2009 when he gets out on Monday (only 8 days in hospital!) and I send all good wishes and thanks for this forum – it’s been brilliant.

    Fiona x

  77. I have been reading, with much interest, all the comments made on this site. I am currently being investigated for an insulinoma, after experiencing quite a few episodes of hypoglycaemia. They have dropped as low as 1.5, for no obvious reason and often don’t get above 5 all day. However, some days it is fine and my levels are “normal” (as described by the specialist, he states 3.5 to 5.5 are the acceptable levels, 60 to 90 in other countries!!)
    I also have spells where I just don’t feel particularly well, a bit out of it and run-down. When I check my levels, they are sometimes low and other times reasonably ok. Often, the levels drop throughout the day, sometimes after food, sometimes not. There seems to be no pattern. I am due to have a CT scan soon, and then wait for all the results of bloods, scan etc. One thing that concerns me is that if I have days where my levels seem ok/normal, and others when they certainly are not, if I have had blood tests taken at hospital on a “good day”, will this distort any results? I hope that makes sense!
    Wishing everyone the best of health and happiness.

  78. Hi Everyone,
    John and Fiona
    Glad that John is doing well, I can understand the emotional bit as that is exactly how you feel. Many of us on here know exactly what he has been through and thrilled for him that the worst bit is now over. I was lucky to have my op on the NHS. I have to say that once they had found out what was wrong with me things moved very quickly with the first insulinoma. Although it took 12 months to find the problem , but because eventually I went into a hypo coma on a public service bus I had the op within a week of that incident. I hope and pray that all will be well and that John will soon be home. Love to all others on here who are facing surgery or are having tests or taking the dreaded diazoxide like myself!

    Janet xx

  79. Jackie,
    Well i used to live in Las Colinas, now i am in Preston Hollow area in Dallas. My mother-in-law lives in colleyville so i frequent that area. We live very close to one another! i did hear of Carolyn Garner. I believed to hear she too was very experienced and recommended! You do have quite an advantage in being a nurse!! Mostly good, some bad i suppose. My mother was an R.N for 30 years, so i guess i have some understanding in the more personal, not medical view.
    If your up for the 2nd opinion, i think my doc would be great to talk to. I have all the numbers and know his nurse pretty well(oddly enough i went to high school with her daughter back in albuquerque. i would love to talk and do anything for you to help! i delt with this awful condition for 6 years…….. its so debilitating. i can give doc numbers or whatever. give me a call if you like 214-557-0333 or if your more comfortable blogging , i will be happy to answer any questions to my knowledge.
    Pamela

  80. Hi again everyone – Fiona here.

    We got only a little more info today about what actually happened in John’s surgery. It’s really very different here in the UK I’m thinking – the surgeons here are a bit like an elusive god characters who we get to see if we’re lucky! And you either have treatment on the national Health Service, which we all pay taxes towards (sorry if you already all know this!) or you add to that if you can afford it by paying into a private health scheme. John started off in the NHS and his first consultant came up with the Insulinoma idea. His CT scan and fasting tests were all done on the NHS but because things go unbearably slow here – as in he wouldn’t have even had the a meeting about the CT til Jan 15th (!) let alone an MRI or Octreotide scan, we decided to call on a very inexpensive, subsidised health scheme he’d paid into at the school we both work at.

    Things went amazingly fast after that – it’s really shocking how you jump all the queues if you’re private in the UK but after the years of blood sugar weirdies we didn’t care – sorry but it’s true….And it also explains why he had his surgery on a Sunday, Jane! The NHS doesn’t do surgery at weekends unless it’s emergency so it’s a chance for the surgeons to have loads of time to take over their operations – and to make a load of money too! I have to say at this point that they are the SAME surgeons who work in the NHS so it’s not quality of care that’s compromised if you stick with the NHS but speed of treatment. Thoroughly immoral don’t you reckon?

    But there’s another difference too between what I’ve been reading here in the forum and us in the Uk – we dont really have any choice of surgeon – even privately – John’s consultant simply said ‘this is who I recommend’ and it would have been extremely difficult and awkward to say we wanted to do some research first – so we didn’t! And so far we have no complaint!

    But back to the surgery…

    He started with a full load of anaesthetic but not an epidural – not quite sure why, but the anaesthetist seemed keen to avoid it if possible for at least the keyhole attempt. But even after the insulinoma was located and open surgery was chosen, he still didn’t administer an epidural. This means John has a lot of pain around the wound site but he’s on the morphine pump and paracetamol and so far, it’s just about enough. His lung was collapsed and he’s now having to cough and breathe deeply to help clear things but he was sitting up in a chair when we arrived in the High Dependency unit this morning (the doc there told us he didn’t really need to be there at all but that’s what surgeons of private patients insist on!) and much less sleepy – until he clicked his pump not realising just how quickly it works! Ok – end of visit then!
    But each time we visit he’s more and more strong. He could have got rid of the catheter today but he’s chosen not to til tomorrow ,and he’s still not allowed to eat but he has had several very British cups of tea! He got quite emotional as we were leaving and I reckon the shock of what he’s been through is only just sinking in – that’s quite typical of his personality but I can’t help adding here that it’s also a bit typical of men! Argue if you like, guys – I can take it!

    So that’s how it’s going at the moment – oh, except to say his blood sugar levels are STABLE! I can’t believe it! And I even went out and bought him some low-sugar jellies to tempt his appetite when he’s allowed to start eating. Low sugar jellies..hehe – it seems almost cruel!

    Best wishes to all and thanks to everyone who sent messages.
    Fiona

  81. Pamela, I live in Grapevine and my surgery is planned at Denton Regional Hospital. The surgeon is Carolyn Garner and she came highly recommended. I was also given your surgeon’s name but was not sure I wanted to go to the medical center and be part of a teaching hospital for this one. I am a nurse and not sure that is good or bad. Sometimes it is not good to know so much. She says she has done 20-30 of these and I really liked her. She recommended I get a second opinion and offered as well your surgeon. I think the two of them are what we have in this area. I would love to hear more about your experience.

  82. Tatia,
    sorry to hear of the complications you have faced…. hopefully this time around you will recover properly. I am not sure why you are not able to eat, but i know i did not do well with all the pain medicines and antibiotics…. they do tend to upset my stomache and bring my moods way down. Since its only been a few days since you have been home this time around, maybe you just need a some extra days due to those complications and then you will begin to feel better.
    sorry i am not to helpful, but i do hope you begin to feel well real soon!!! Please let us know.
    Best Wishes
    Pamela

  83. Hello everyone,
    I just wanted to update you all on my progress. It is not so quick! I had surgery on Dec 9th with a internal bleed complication. I finally came home from the hospital feeling fine. I was eating well and anything I wanted. I soon got sick agian with fever and not able to eat anything. I was sent back to St Louis by ambulance for an infection or puss pocket from the original complication. After being in the hospital for a week I returned home on New Year’s day. I am feeling better except for not being able to eat due to nausea. I am also very depressed. I was just wondering if anyone else had these side effects and what they did to help. I am not sure why I can’t eat now but could before. They installed a drain when I was in the hospital last that I will need to wear for 2 to 6 wks to drain the infection. I love hearing from everyone, the new babies and John about your surgery yesterday. I wish you a speedy and easy recovery. If anyone has any thoughts or suggestions if they experienced any of this please let me know. I wish you all great success and health in the new year.
    Tatia

  84. Hi Jackie
    Your not alone here in Dallas…. … I had my surgery here this past june. My surgeon was over at UT Southwestern med. center. I highly recommend him. My tumor was in the head of my pancreas. We were going to try and do the surgery lapriscopically, but decided to open me up. I too gained about 40 pounds with this horrible illness, and have gladly lost them all and then some! Where and who is your surgeon? Mine was Fiemu Nwariaku. Very wise, and has experience with insulinomas! You probably have forgotten what it feels like to live normally, but the 22nd is around the corner, and with a few weeks of healing you will be back to your old self! Where are you in the Dallas area? Please let me know if there is anything i can do since i am right here!
    John and Fiona
    I am so glad to hear the surgery went well! A few weeks of recovering will soon be behind you as well and a new life will begin for you and your family! Prayers to you all, and to the happiest new year!
    Angelique, and Laura
    CONGRATULATIONS on your new babies! I have enjoyed being a mother to my girls so much now that i am healthy!! I wish the best for you and your families!
    Nicky,
    i am so glad to hear you are feeling so well now and you can also enjoy your girls!!!
    Janet,
    hope you had a nice holiday…still always thinking of you, and hoping you are doing well and able to keep up with the medicines and sugars okay.
    To all…. prayers are with you for a happier healthier New Year.
    Pamela

  85. Hi everyone. This website has meant so much to me reading all the comments. I have been just diagnosed with an insulinoma and am scheduled Jan 22 for surgery. Your posting have been such a comfort as I have am adjusting to the news and the thoughts of surgery. Like John I will have to have the big incision since mine is near the pancreas head. I have dealt with this for a year and the episodes with hypoglycemia were really scary. Can’t wait to be done with this and hopefully get some weight off. I have gained at least 40 pounds trying to eat enough to keep my sugar up. I live in the Dallas, TX area and there are two surgeons that have experience with this surgery. Thanks so much for sharing your experiences and hope all of you that are recovering feel better soon.

  86. Hi John and Fiona,

    Funnily enough I was thinking about John’s surgery because Sunday seemed an unusual day to operate. It is very good news that it has gone so well. Recovery does take a while but in a few days or so he will be able to start to read all those books he has been meaning to but hasn’t yet had the time! Let us know how he is doing.

    Jane

  87. Hi Fiona. So glad that John’s surgery was sucessful and that he is doing well. Thoughts and prayers are with you an also everyone else on here who is facing the probelms that this horrible condition brings. Love to all.
    Janet xx

  88. Hello everyone! I’m Fiona, John’s wife and I have just come home from the hospital after John’s surgery. He did it! I’m so relieved! His surgeon started with keyhole and they could see the insulinoma on the head of the pancreas but he couldn’t get proper access so he opened up and eneucleated (Sp?) it without the dreaded Whipple procedure!
    He’s in Intensive Care for one night and he even cracked a few jokes with me and our 2 wonderful children, Alex and Maddie who, even at 25 and 23 found today a real rite of passage and they said to me that they needed to be involved in the whole process.
    It wasn’t the best day – in fact it was hellish – but it’s done and he’s ok!
    Thank you all for all your experiences and comments on this forum. It prepared us really properly for what might come so there were no frightening surprises.
    All our thoughts are heartfelt for anyone with upcoming surgery and John or I will keep you updated with his progress.

  89. Hi everybody, my name is Heidi

    My husband, Michael, (age 49) is suffering with an insulinoma and we are progressing slowly though our medical system to get ready for his operation. We live in a smaller city in northern BC, Canada, and we have only limited access to the level of expertise needed, so we have been flying back and forth to Vancouver (800 km south) to get to the appropriately knowledgeable specialists. He has had 2 CT scans, as well as an MRI, and several rounds of blood tests, and they tell us they know he has a tumor, but haven’t actually seen it yet. At this point we don’t know a surgery date, but they have now found the ‘hot’ zone in the head of the pancreas during a calcium stimulation test run in November 08. He is scheduled to see the surgeon in Vancouver on Feb 3rd 09 and will then be given a spot on the surgical wait list. Interestingly, our medical system considers insulinoma to be an elective procedure, as the condition is ‘manageable’, or so they say. However, they do agree that it is imperative it gets removed with some urgency. The surgeon is supposed to be very knowledgeable, but is like talking to a grizzly bear. Should be a charming guy then!

    We have had an interesting journey with this illness, although maybe not as dramatic as some of you, culminating in my calling the ambulance on April 17, 2008 because I thought he was having a stroke! He was so lethargic and talking gibberish, when he spoke at all. The paramedics recognized it as a sugar problem right away, but assumed he was diabetic and kept asking me about his medicines (he takes nothing). The first blood test was 1.7 but after IV Glucose and a two-day stay in emergency, he was sent home with a glucometer and instructions to not let his blood sugar get below 4 by eating 6 times a day. They did all kinds of tests while he was in hospital including a fasting test (he got down to 0.7 in 13 hours). The one thing everyone said was that they were shocked he hadn’t gone into a coma. Luckily we had a local internal medicine specialist with 35 years experience who told us it was a one in a million occurrence and he had only seen a few cases in his lifetime living in the north of our province, but that Mike should come through ok once the tumor is removed. Dr. figures he has had the tumor for at least couple of years, and he had gotten used to having low blood sugar and feeling down. He has been putting on so much weight the last 18 months, I had asked him to go on a diet with me since we could both afford to lose a few pounds. Who knew this was a symptom of a serious illness! That is apparently what set him off – reducing his intake by 300 fewer calories a day tipped the scales and he finally manifested the crisis. Now we understand why he was so tired and grumpy for this last school year.

    We had a major trip to Europe planned for July and August 08, to pick up our 15 yr-old son who had been in Germany on a school exchange, and travel around to celebrate our 20th wedding anniversary. Drs all recommended strongly that Mike not go on this trip as he would be likely to get unstable and he couldn’t get travel medical insurance, with a pre-existing condition. Well, this trip has been planned for the last 5 years, and he eventually decided to go anyway. Since we have the tools to manage his situation food, juice, glucometer, glucose tablets and glucagon injector, we did decide to go. While we didn’t get to everything we had planned, due to Mike’s needing more rest every day, the trip went quite well and we have wonderful memories of our time traveling as a family to such interesting places. It did, however, delay the next step for testing and we are paying the price now with longer wait times for everything.

    He is an elementary school teacher and is on his feet for hours every day. At this point, Mike works 4 days a week, but his sick days are getting more frequent as he gets exhausted so quickly. Luckily he is he has an understanding boss and co-workers. (these folks keep an eagle eye on him at school and make sure he is doing ok, for which I am very grateful).

    It has been very interesting reading other peoples’ comments on how their surgery went and the recovery times etc. Once Mike has surgery in Vancouver and is released from hospital, he will be flying home (driving takes 10-12 hours in winter conditions) and we will see how things evolve. I can only describe this situation as living with a ghost. Mike is so tired by the end of workday that he is very quiet – sits watching TV or reading. A short dog walk around the block is too much sometimes. He just isn’t participating in our family life much any more. We don’t blame him, as we know how things are, but we will sure be glad to have the real Michael/Dad back. We have lots of snow in the winter and I have done most of the shoveling so far – he just can’t right now. Oh, well, I need the exercise too.

    So, I will keep checking in on this blog to see how everyone is doing and we will post our updates as they happen. It is helpful to know that others are getting through this challenge. We know he won’t be having laparoscopic surgery, but we would prefer not to have the dreaded Whipple if it can be avoided.

    Thanks for being out there and letting us know how things go – it helps you to not feel so alone with this ‘interesting’ problem!

    Heidi

  91. Hello everyone! Sorry so long since my last post. I had a beautiful baby girl on oct 28th and now with 4 kids under 6 I am a bit busy… It is so great to hear how many of you are doing so well post surgery!

    Jamie- having hypoglycemia is like being bi-polar. You lose the ability to think and to make rational decisions. Before my tumor was removed, I would not allow myself to be alone with my own children, it really is that bad! If I was you, I would hope the tumor is the whole problem, which it probably is! As for the surgery, you won’t know what type of surgery she will have till it is over. They can guess b4 they start, but any surgeon that guarantees laproscopic probably does not have enough experience. You need to find a surgeon whose specialty is pancreatic. Good luck!

    Sue, if you are that close to MD, why not go to Johns Hopkins? They are the best, Dr Cameron there has more experience with whipples than anyone in the country.

  92. Hello to everyone and to all a Happy New Year!

    It seems so long since I last logged on.I must say that I now feel really great. My surgery was August 5th and since then I have lost a total of 14kg (almost 31pounds) and I wasn’t even trying. Apparently high levels of insulin in your body aid in converting suger into fat more readily which is why we all put on weight so fast. So as my body returned to normal so too did the fat fall away (well nearly all I still need to lose another 6kg to be at my pre-insulinoma weght.
    My anaemia has corrected itself and my digestion has improved heaps, only if I overindulge in fatty stuff like I did at a bbq yesterday do I have to run to the toilet.
    Over christmas I even managed to join in a baseball game at the rellies and not have to run for food or a drink instead of a base “wow”.
    To all those recovering from surgery the light at the end of the tunnel is so much brighter than you ever imagined. I also have a 3 and 6 year old daughters and can finally pick up the little won or play with the elder without saying mum’s to tired.

    Tatia so good to hear its over for you, surgery is different for everyone. I had 2, one to remove the tail of my pancreas (which they thought the tumour was in and wasn’t) and that suregery left me with a complication of fluid building up because my drain was removed too soon, it was perfomed laproscopically. I recovered fairly quickly from that maybe a month of soreness.Mind you my hypos were back before I even left hospital. The second more recent one, only 17months after the first was a bit more tricky but nonetheless a success, and success tastes sweeter than anything.
    Keep the faith and remember we are all so strong,its amazing what our bodies have put us through and yet we gain strength from eachother without ever seeing eachothers faces. xx

    Hazel sorry to read of your continuing struggle, even though NZ isn’t that far from OZ I wish I could be closer to give you personal support. It seems there are so few of us here but I suppose with a population of 20 something million people and the odds of 4 in a million chances are you probably aren’t verey close to someone else who has the condition. I guess I was lucky getting such a wonderful surgeon who deals with all aspects of cancerous pancreas’ and left me well intact. I hope 2009 is your year for all your recoveries. xx

    Hi Alan ! Wow a body builder this thing really dosen’t descriminate. Its all very unnerving the hypos and confused moments.I must say I was hoping my scatter brain moments would all be behind me but alas I still am a little fuzzy, but I can live with that It adds to my character ha ha! My insulin levels have been stable since the moment the tumour was removed (from the back of the head near the duct). I have 85% of my pancreas remaing and an intestinal graft over where the tumour was removed because it left a bit of a hole and the were concerned about leakage of digestive enzymes, but I feel great. You get the occasional twinge but I put it down to scar tissue inside and out, after all my incision required 47 stapples.
    Good luck to you I hope life returns to normal for you really soon xx.

    To Janet, Laura, Peggy, Ange and everyone else a big hug to you all from across the miles and good luck and best wishes for 2009 stay well xxoo

  93. Hello John,

    I, too, am a teacher and had my operation to remove my insulinoma in 2007 in Birmingham, England. As it is major surgery you can expect the recovery to take quite a time. I was off work for about 4 months but was able to do gradually do lots of things before I returned to the fray.

    After the removal of the insulinoma I was immediately better: no temporary diabetes, sugar levels fine. It was amazing and everyone, even now, says the difference in me is remarkable as I really was very unwell before. I displayed lots of very peculiar and frightening behaviours at home and at work!!!

    I’m sure you’ll agree that any discomfort you may experience will be worth it because your life will change for the better.

    Happy 2009!

  94. Hello everyone

    My name is Jamie. My sister was recently diagnosed with Insulinoma. I am trying to locate a surgeon in the Tampa FL area that is willing to perform a laporoscopic procedure on her. I am looking for the least invasive procedure, initially, and am hoping to avoid the “exploratory” type of procedure. Any recommendations?

    This disease has controlled her life for the last 4 months and has caused drastic behavioral problems and mood swings. She has lost her job and home among other things. She has also had run-ins with the law, which made me think she was BI Polar. I even had her Baker Acted into a mental institute…because I didn’t know what else to do. She has racked up over 30K in Hospital bills and noone knew what was wrong with her.

    She passed out in a parked car and was accused of drinking/drugs before the Ambulance discovered her blood sugar level at 40. Upon further review, they say she has Insulinoma…but a part of me still think she has other issues as well.

    Has anyone with Insulinoma had Bi Polar type symptoms??

    Any feedback would be apreciated.

  95. Hi to all and I wish everyone on here a happy 2009 and hope we all are blessed with better health! I hope those tht have had surgery recently contine to make good progress and to John I will be thinking and praying for you this weekend. I am still taking loads of diazoxide and water pills but am ok at the moment. After surgery there is no denying yo will feel grotty, but every day is so much better than the one before. I too play and teach piano, well just a couple of very yong pupils, near a small town in Birmingham, England.

    Love to all and a healthier new year!

    Janet xx

  96. John

    Which hospital are you going in to?

    Its a good sign that they will consider laparoscopy first they must think it should be easy to get to!! My surgeon told me he wasnt even considering that route !! Even so i do think they tell you the worst case scenario so that when they succeed in the easier procedure you are even happier and think they are wonderful!

    If you are private things will be different but i had my drain in for just under a week I think – may have been 5 days! By that time you are quite attached to it (ha ha) and have got used to carrying it around!!

    My pancreas was fine almost straight away and my sugars were up immediately!

    Watch out for the come down if you have a morphine pump. You may feel really depressed that day and you dont put two and two together till after, then realise its the morphine withdrawal!

    Good luck and take it as it comes, with laparoscopy you could be up and around in a week!

    Keep us informed – anything else you want to know im here now for a few hours!1

    Angie
    Ps I was in the Royal London under Mr Battacharya.

  97. An update – I go in for surgery in London this Saturday 3 January, operation on Sunday 4. Initially, they’ll try a simple laparoscopic procedure but will then decide whether the full procedure must be done – duodenum, pancreas bits and gall bladder – and I shall only know when I come round.

    I am hoping for the first way to succeed, of course, and am practising PMA – positive mental attitude – all the time. But I have cancelled all my concert engagements in January and put those in Feb and March on hold. I am told there’ll need to be a drain in temporarily – and temporary diabetes until the pancreas wakes up and restarts its correct insulin production.

    I am also only too aware that it could be months till I am able to restart teaching and concerts. But I refuse to consider that yet.

    One step at a time!

    I appreciate others’ comments and reports – this site is very helpful to all of us.

    And I wish all a very healthy and happy new year, insulinomas eradicated, strength back.

    John

  98. Dear friends,

    Joyous news! Baby Katelyn arrived on the 30th November. The pain I had from the scar tissues is much better now that everything is not so stretched anymore and I sm now back on my normal dose of enzymes (creons). I wonder if Laura had her baby – we have not heard from her.

    Tatia,
    I am so glad youre on the mend. I passed most of my time at the beginning post op propped up with pillows and watching movie after movie. Walking short distances is also good and I can assure you, you’ll see yourself getting better and better day by day. I remember 2 weeks post surgery I couldn’t lift a kettle and by week six, I was christmas shopping (though it tired me out by the end of the day). Thinking of you and wishing you a speedy recovery. xxx Angelique xxx

  99. Like all of you, I have also been diagnosed with insulinoma. It took three years to diagnose ,but it is a relief to finally know what it is. It is 1.2 cm. located in the head of the pancreas in between the pancreatic duct and bile duct. I live in New York and would like to know if anyone knows of a surgeon in New York.

  100. HI how r u all?
    I stumbled on this website by accident. I just had a baby 3 months old. the hell i went through when i was pregnant I kept eating and checkin gmy sugar it was terrible, I kept saying something is wrong, but my husband put me into psychiatric hospital, cuz no one believed me. Finally I had my baby abd symptoms didnt go away, I am afraid to go outside and stay home alone with my baby, I feel so bad. My husband and my parent turned away from me, because they htink that i am depressed and thats why i am chacking kmy sugar and eating… I went to a doctor and he told me thats it seems that this is what i have, insulnoma. But no one in my familly is supportive they call me fat cuz i gained 40 lbs. and keep checking my sugar and eating non stop. Can someone plkease talk to me about htis more, all i find is studies on ferrets…
    popygai@yahoo.com
    9179923260

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