Insulinoma
Insulinoma is the most common functioning tumor of the pancreas, and affected patients present a tableau of symptoms referable to hypoglycemia (symptoms of catecholamine release), mental confusion and obtundation. Many patients have symptoms for years. Some have been greatly troubled by emotional instability and fits of rage, often followed by somnolence.
Incidence: This tumors are so rare. Probably the best series of insulinomas is from the Olmsted County (Mayo Clinic). This study (cohort) was seen over a sixth decade period (’27 to ’86). The incidence there was 0.4 per 100,000 person-years (or four cases per million per year).
The diagnostic hallmark of the syndrome is the so-called Whipple triad, wich consists in symptoms of hypoglycemia (catecholamine release), low blood glucose level (40 to 50 mg/dL), and relief of symptoms after intravenous administration of glucose. The triad is not entirely diagnostic, because it may be emulated by factitious administration of hypoglycemic agents, by rare soft tissue tumors, or occasionally by reactive hypoglycemia. The clinical syndrome of hyperinsulinism may follow one of two patterns or sometimes a combination of both.
The symptom complex may be due to autonomic nervous overactivity, expressed by fatigue, weakness, fearfulness, hunger, tremor, sweating, and tachycardia, or alternatively, a central nervous system disturbance with apathy (or irritability or anxiety), confusion, excitement, loss of orientation, blurring of vision, delirium, stupor, coma, or convulsions.
Because cerebral tissue metabolize only glucose, prolonged profound hypoglycemia may cause permanent brain damage. Clinicians need to be alert to this when attempting to induce hypoglycemia by fasting.
Preoperative NPO orders must be accompanied by intravenous administration of glucose.
The diagnosis: Is established by demonstrating inappropriately high serum insulin concentrations during a spontaneous or induced episode of hypoglycemia. Then imaging techniques are used to localize the tumor. The available procedures include spiral CT, arteriography, ultrasonography (transabdominal and endoscopic), and 111-In-pentetreotide imaging. Transabdominal ultrasonography is our preferred initial test.
Insulinomas are small (usually smaller than 1.5 cm), usually single (only 10% are multiple and those are usually associated with MEN 1 syndrome), usually benign (only 5% to 10% are malignant), and usually hard to find. Success in localization often parallels the degree of invasiveness of the study.
Its treatment:
Treatment for insulinoma is surgical. At operation, the incision is dictated by operator preference, either a midline incision from the xiphoid to below the umbilicus or a bilateral subcostal incision. Exposure should be generous, and mechanical ring retractors are an asset. The entire abdomen should be explored, with particular attention being paid to possible liver metastases.
The head of the pancreas should be palpated carefully and examined anteriorly and posteriorly; the body and tail of the pancreas should be palpated, dividing any ligamentous attachments to the spleen, delivering the spleen into the wound, and rotating the tail anteriorly to allow palpation and visualization.
Anyone operating patients with pancreatic islet adenomas should be familiar with techniques for, and limitations of, intraoperative ultrasonography. The higher-resolution (7.5-to 10-MHz) transducers are used in the pancreas; because of its greater depth of penetration. Islet tumors are detected as sonolucent masses, usually of uniform consistency. Several reports attest to the high degree of accuracy of intraoperative ultrasound.
Review of current literature leads to the almost startling conclusion that nearly all syndromes of hyperinsulinism are due to insulinomas and that nearly all insulinomas can now be detected before or during surgery. Having said this, there appears to be scant justification for an empirical (“blindâ€) partial pancreatectomy except in patients with insulinoma plus MEN 1.
Most insulinomas are benign and can be enucleated. Nutrient vessels in the bed of the adenoma should be cauterized.
The 10% of patients with hyperinsulinism who have MEN 1 syndrome have multiple islet tumors, one of which is usually dominant and responsible for the excessive insulin output.
Anne
Dr Drake at Barts was my consultant who is one of the top guys in the endocrine department. It might help to ring them yourselves to get any info. A phone call could make all the difference – it may not be possible but who knows!
At least you would have tried.
I dont have the tel no in front of me but its “Barts and the London”.
Good Luck, if you get through to him and hes ok tell him I put you in touch to get some information, Im seeing him in june for my follow up! Mind you its two years now!! Im probably way down on his list!
Angie
Is there a consultant who we ought to ask to be referred to at Barts?
Is there a consultant who we should ask to be referred to at Barts?
Angie,
Thank you. We are in the Midlands so quite a long way from London . Already been waiting several months for the test. Everything up here slow to stop. We have insisted and insisted to no avail. That’s what is so depressing. Without the help of the GP and consultant (who both appear very willing to help) there can be no progress. Their hands seem to be tied by lack of facilities
Anne
Without knowing where you are or how long you have waited its a bit difficult but go back to your GP and insist something is done. This is considered a life threatening condition. If you are near London get referred to Barts as they are fully clued up. If not find a hospital that has experience with insulinomas. This is very important as most hospitals do not know what they are dealing with. I went to Barts and within two weeks i went in for my 72 hr test.
Good luck any questions just post!
Heidi
All my thoughts are with you and Mike through all this, all my best wishes for his safe recovery.
Audra
Dont be fazed by ICU, the more care and attention you get the better. Always better to be safe than sorry! I was in HDU (high dependancy unit in UK) for a day to carefully watch all my signs then moved to a surgical ward for two weeks in the end. Mine was open surgery as I had the tumor in the head near a duct – was thought to end up with a whipple but escaped that joy!
Good luck and hello to all.
Angie
Please help. My partner has become so low now waiting for the 72 hour test that never happens on the British NHS. i presume this is the chemicals kicking in and producing this effect. Is there anywhere that does this test privately and how much would it cost? I feel time is of the essence
Happy Saturday!
It is truly amazing to have two insulinoma sufferers in such close proximity! Are there any other sufferers out there from Saskatchewan? Heidi, I’m with you in needing to see something green. I may need to venture to a greenhouse today to get a fix. Take Care.
Well folks,
the PG chapter of the worldwide Insulinomiac Club had its first meeting yesterday, when Kim B dropped by the hospital to meet Mike face to face. To say that it is amazing that 2 sufferers who live in a low population area (Northern BC), actually live in the same small city and within 10 km of each other, is an understatement. Thanks for dropping by Kim B., it was great to meet someone who actually understands this dear little illness.
Audra, I would stress again, that you will need to be a very strong advocate for yourself and will often have to lead your medical people to find the answers you need. The abdominal ultrasound will probably be of little value, so why waste time and/or money doing it. The CT and MRI have been the best 1st line of detection for most of our members, with Endo US being more invasive but very useful in detecting tumours that have not been visible with the first 2. Kim B told us yesterday that his tumour lit up like a Christmas Tree light during his CT, while Mike’s remained hidden until the EUS. They both had similar-sized tumours, but in different locations and that seems to have been the difference. I would urge you to agitate for a CT rather than the Abdominal US.
The laproscopic surgery only seems possible for tumours that are clearly identified, and in a ‘good location’. If your tumour is in the head of pancreas, it will be open surgery, because of the complexity involved. Based on the comments of other members of this forum, it seems that laproscopic is most possible when the tumour is in the tail.
The surgery process isn’t fun (neither are other major procedures, trust me) but the relief felt when you don’t have those lows the day after surgery is remarkable, according to my husband. I think the ICU is really just a precaution after a major surgery like this. Mike was into a regular ward within 36 hours. They just wanted to make sure all was well, and he struggled a bit during the first day.
Well, must get some chores done around here, then head off to visit my dearest. It’s cool today, 2.2 C, and we had hail and thunder last night. So no more cleaning up the yard today. Most of the snow in our yards is gone, but there are still piles of it by the road, where the snow plows put it during the winter. I hate this part of spring! I want green!
bye,
Heidi
It depends on where the tumor is located. If it is in the tail of th pancreas you may be able to have a laparascopic procedure. It if is located in the head of the pancreas then probably not. But either way it is worth it. I was in ICU one day post op and mine was located in the head of the pancreas so it was a big surgery.
Thanks Jackie and Janet! I’ve spent lots of time reading posts on this site and it is very affirming to know that others have struggled with similar issues. It’s comforting to know that I’m not alone. I’ve been struggling with headaches and feeling like a stunned banana. I contacted the diagnostic imaging department today and was very disappointed to learn that the ultrasound I’ll have on the 29th is an abdominal ultrasound (not endoscopic). I’m now realizing that the likelihood of a simple laparascopic surgey with quick recovery is not necessarily realistic. Do most people end up in ICU following surgery? Thanks again for listening, everyone. My thoughts and prayers are with Heidi and Mike as well.
Audra and Maisy, I got so much comfort as well as information from staying in touch on this site. It was invaluable to hear from all that had gone before me. I did not feel as alone and I had more information to talk with my physician about. I wish you a speedy diagnosis and a quick resolution to all of this. It was awful having to deal with low blood sugar and it is great to have my life back. You will be in my thoughts and prayers.
Heidi,
Just to let you know you and Mike remain in my thoughts and prayers. I am sorry to hear of all your problems but feel sure you will get there in the end. Stick with it, and give Mike our bestest regards. I am sorry I have not posted lately but my lap top broke and i have only been able to catch up occasionally by using others computers! Hwever, I am now back online so should be around more.
TO A udra and Maisy,
WE all so much know what you are going through. Getting this condition diagnosed is one of the biggest hurdles of all, then locating the tumour it seems even harder, so it is long road. But we are all here to help each other so just keep on visiting the site and giving your stories as whilst it gives you an opportunity to sound off, others too ca learn from it. So take care everyone, love and prayers.
Janet
Hi Maisy,
I think we could be twins except for the fact that I would not describe myself as an athlete or having trained for anything other than a Grey’s Anatomy marathon (or something like that). Your levels sound very much like mine. It is rare for me to be above 4 and if I am I usually dip back into the 3s quite quickly. While I knew I had hypoglycemia (though didn’t know the cause) I had one episode after having popcorn, coke, and a yogen fruz (again, it was a movie marathon). Within an hour, I felt psychotic. I had palpitations, was hot (ripped off my clothes), was crying uncontrollably, and couldn’t breathe. I checked and was 2.1. I also was treated for depression for over a year in relation to feeling tired all the time, easily crying, and feeling a lack of spark or motivation. My symptoms are always more pronounced pre-menstrually and I think my symptoms first developed after (or during) my pregnancy. Now it all makes sense to me. I hope you have an opportunity to get connected with an endocrinologist who can get to the bottom of things for you!
Laura,
Thanks for your thoughts. I was kind of wondering about the efficacy of an abdominal ultrasound as well. Now that I think of it, I think the secretary said “abdomen and pancreas”. I know I have to fast for the procedure so maybe it will be endoscopic. Let’s hope! The endocrinologist that I am seeing seems to know what she is doing. So far I have confidence. She came to Canada from Germany a few years ago. I will have my MRI on the same day and will see her for follow up a couple of weeks later. In the meantime, I am monitoring my blood. It’s funny though-during my 72 hour fast, my level dropped to 1.9 and I didn’t feel overly symptomatic. Mind you, it was in the middle of the night so I already felt like a stunned banana. However, I have been feeling symptomatic in the last couple of days and have been at 3.6 or so which seems to be pretty much my norm….but now I feel symptomatic. Go figure!
Heidi,
Thanks for your thoughts as well. You and your ‘dear husband’ have been in my thoughts. I hope he is on his way to recovery. Summer will be sweet with all of this behind you! I feel grateful to be in a city that has an endocrinologist. I’ll definitely advocate for an endoscopic ultrasound if that is not what happens on the 29th.
Thank you all for sharing your stories, experiences, and for all your support. I have named my insulinoma the “little bastard”. I also have the perception that I’m eating for two (me and the little bastard)!
Take Care.
Audra,
I agree with Laura on this one for sure. From what I have seen regarding ultrasound and insulinoma diagnosis, an external ultrasound would not be likely to find anything, but an endoscopic ultrasound (down the throat) is considered the best tool for localizing possible tumours. It is not fool proof either, but for my husband, Mike, and other sufferers on this blog, CT’s and MRI’s were not not successful at finding these small tumours. In Mike’s case, they identified 2 lesions on the back side of the head of the pancreas, but only one turned out to be a tumour, while the other was a cyst. Ultimately, it is usually the surgeon’s hands and eyes that are the final confirmation during the surgery. If you are in a small city, make sure you get yourself referred to a big city for the proper procedures. In Prince George (pop, 80,000) we have MRI and CT, but not the endoscopic US or the arteriographic testing equipment. And, while we have surgeons here, they are not the specialists who have the experience needed to deal with these rare problems. You need a pancreatic surgeon. For us the nearest specialists were in Vancouver and we have just come home from there after Mike’s surgery.
Maisy,
Again, Laura is right – keep a food diary and monitor your blood sugars regularly so you have evidence of the problems you are experiencing. In some cases, sufferers have encountered medical staff who are able or familiar enough to recognize the symptoms of this rare problem, but so many people we have encountered – nurses, doctors etc, have absolutely no idea and don’t take you seriously when you explain what is happening to you. We were lucky – we saw and internist in our Emerg who had seen this before and knew what it was. So, we were diagnosed immediately – the harder part was finding the blasted thing.
Read up, educate yourself, and fight for a better answer if you are not being taken seriously. Some members of this group have even printed out materials from here to give to their doctors as evidence of what is happening to them. Since this is rare you have to be the driver of this experience, and take charge of making sure you are being treated with sincere effort. It also depends on what country you are in, and how your medical system works. If you read this blog carefully, you will find names of doctors in different countries who have been very helpful to other sufferers and maybe you can get a referral to one of them if your own medical people are not giving you what you need.
PS, I have reactive hypoglycemia, and it has never, ever been as bad as what my husband has been through. I get lows, but after 30 years of living with it, I know what fixes it, and it is rare that I have anything other than mild symptoms for many years. Yours sounds a bit extreme for the reactive version, so keep investigating!
Well, I must head down to the hospital to see my dear husband, and hope that drain is put in soon.
Good luck to you all who are just joining us. It is a very ‘interesting experience’, but the support you will find here is amazing.
Heidi
Maisy, If I was you, I would get a glucose monitor and check your sugar regularly thruout the day. I kept a log with the time, the reading, and what I ate and what effect that had. I was checking my sugar about 10-15 times per day. Then when you go see an endocrinologist, you have something to show them.
Marcus, well the good news is your wife did not suffer for too long before a diagnosis was made! That is the best you can hope for when it comes to these awful little tumors. It sounds like her 72 hour fast was very similar to mine which was less than 2 hours! There is tons of info on this site about questions to ask and what surgeon to choose. She will probably have an endoscopic ultrasound and or a cat scan to determine the location of the tumor before her surgery. Where are you located? What hospital are you considering?
Audra, welcome! I had an MRI which showed nothing as did many of us if you read above. I have never heard of anyone having an abdominal ultrasound to find these tumors. They are so small, I can’t imagine it would be effective. When you compare all the experiences above, it seems like endoscopic ultrasound and cat scan are the most effective techniques to locate the tumors. The fact that your doctor is recommending these tests begs the question as to how much experience he has with this type of tumor. If he is not very experienced with them, I would encourage you to find another surgeon. Good luck! (By the way, get a glucose monitor if you don’t have one already, if you check your sugar thruout the day, it is your best chance to keep your sugar up and avoid the scary episodes!)
Hi Kim B
thanks for the offer – at least we are more comfortable at home (well not Mike so far) and Colin and I are working through this new challenge. However, if you wanted to make a visit to Mike, he is on the 3rd floor, Surgical North Pod A, room 9230, bed A for a few days more at least. He might just like to swap war stories with a fellow sufferer. Ironically, his blood sugars are just perfect, it is just the leakage from the cut into his pancreas that is causing the problems. I am not going to rush him home, and I don’t think our doctor is either, but I am looking forward to him bouncing back to life sometime along the way here.
Isn’t this spring melt a nice change? I see a few crocuses coming up where the snow has gone. Maybe we will have spring before July after all.
Heidi
Thanks, Jackie
Unfortunately, the 2 previous drains both stopped draining on their own, and were removed when they went dry. We don’t know why they stopped working, but the thought was that Mike was healing the inside end over and closing off. Why? that is the mystery! In both cases they flushed the tubing with saline, so maybe there is some other solution. The challenge now is to get the leakage to stop without further surgery. He has now lost a lb. for every day since surgery – 28. It is definitely noticeable now, but not the most healthy way to do it. Well, it would be nice if tomorrow’s procedure gets him able to eat again.
So, off to bed, I need to sleep!
Heidi
I am so glad he is getting another drain. I hope they will leave it in until they are sure there is no further drainage. If it is the duct that is leaking it will heal. It just takes some time. Please give him our best and I hope this will be the last anniversay in that hospital. He is due for some good news and some relief from all of this. Jackie
Wow you guys sure have been through the ringer! I geuss it will be just a little longer for the back to normal but it will come. Take care and if there is anything I can do- just let me know–Cheers–Kim
Another day, another CT scan and the diagnosis is? Fluid build-up that is pressing the stomach and blocking the opening to the small intestine, thus the vomiting – nothing can go through. So, guess what the cure is? another DRAIN! Mike is scheduled to have a CT guided drain placed tomorrow sometime. Meanwhile, he is on IV fluids, no food or drink by mouth and a captive on the 3rd floor surgical ward of Prince George Regional Hospital! It was April 17, 2008 I have him ambulanced to PGRH when he collapsed from the insulinoma, and it now looks like he will spend the anniversary in the same hospital.
I am feeling a great sense of deja vu and more than a little bit of frustration.
Bye,
Heidi
Heidi,
Wow, you guys have really been through the wringer! I am so sorry to hear about these setbacks. It’s always so exciting to see one of “our gang” off to surgery & a better life just around the bend, but I guess some bends are longer than other!. At least you are home now – I imagine that will help everyone’s state of mind a lot. Thinking of you all and hoping Mike will be on the mend soon.
Kim
Mike is back in hospital…but this time in Prince George. He took a big downturn over the Easter weekend, and started vomiting again, getting weaker by the day. He felt a bit off when he visited our doctor on Thursday and she gave him some medications to try to ease his symptoms. We were in telephone contact with her daily over the 4 days, and she saw him again today in her office. He vomited while in the office, and she determined that he was very dehydrated; possibly developing gastritis or a bowel obstruction, so she had admitted him directly to the hospital, through emergency to have him checked out.
Unfortunately the emergency department was frantically busy, so it has taken most of the evening to get him into a proper nursing bed, but he is now on IV fluids plus several drugs to combat the bad stuff going on in his body. He also had more blood tests and blood cultures, as well as an abdominal x-ray to see if there was a blockage developing. Our Dr. plans to keep him in 2-3 days at least, to make sure he is functioning normally before he can come home again. Because he is considered a transfer patient from VGH, he is under contact restrictions (gloves and gowns) until they culture swabs for MRSA (they tell me this is unlikely, but required as he was in another hospital until recently).
He did not look happy when I left the hospital at 11:30 pm, but he had a bevy of nurses working on him and I felt he was in good enough hands that I could come home for something to eat and try to sleep.
If this is how he copes with illness, I want the old Mike back! This is really the first time he has been seriously sick in the 21 years that I have been married to him and I liked it better the other way!
I will keep you updated when there is more news. Thanks!
Heidi
Hi
I have been thinking that I am nuts, but having read this website I am wondering if I have the right symptoms after all! I have had hypo attacks (shaky hands, almost ‘shaky’ vision and a desperate need to eat, for a long time. These are much worse during my pregnancies. During my last pregnancy, I thought I was ‘hypo’ and was in the sweet aisle trying to buy some sweets when I had a seizure and woke up in hospital. I asked at the time whether I could have been hypoglycaemic, and they said it wasn’t too bad – they checked it when I finished seizureing and it was 2.9 (lowish). I thought the whole point of the body seizuring was to induce a sugar release??
Anyway many MRI’s later, they said I must have epilepsy but I haven’t had another episode in 5 years. I have had many ‘hypo’ episodes. I am fine if I eat correctly, avoid sugar (i will just about pass out if I eat a pavlova or heavily sugary food). I sometimes take a blood sugar and it is between 2.2 and 3 if I feel shaky, but I have never seen it over 4 or 5.
During exercise ( I do endurance running and triathlon ) I feel like I underperform constantly, and if I push myself I definitely get double vision. I went to an ophthalmologist for a check up as every time I did a fast run I would have extreme double vision – almost falling over because I couldn’t work out how far away the road was from my feet!
I was thinking of doing a proper glucose curve during the day – would this be helpful? I have often asked doctors if I could have hypoglycaemia and they shrug it off and tell me to eat more regularly (!?!)
Thanks – great web discussion
Maisy
The issue that I am aware of is that if the pancreatic duct is leaking pancreatic fluid then it can be an issue. The drainage has digestive properties that can be a danger to the surrounding organs and tissues. I had mine for 8 weeks and it was removed once the duct healed and I no longer had drainage. Not to even begin to say that Mike is having the same issues. But when the tumor is in the head of the pancreas it can be a problem with leakage.
Hello everyone!
I am a 40 year-old Canadian woman recently diagnosed with insulinoma following a 72 hour fast. I am awaiting an abdominal ultrasound and an MRI. I’m wondering if anyone had an abdominal ultrasound that was successful in allowing visualization of their insulinoma? Happy Easter and happy healing.
I know I have said this many, many times and am probably beginning to sound like a broken record to you all, but I strongly encourage any of you who have not yet had surgery to speak with your surgeon about the necessity of drains. My surgeon Dr. Matthews who is the cheif of surgery at the University of Chicago does not use them anymore for our types of surgery. He believes they cause more complications and unnecessary patient pain than they prevent. I had absolutely no issues at all like are described above. I was in the hospital for 7 days, then went back to get my stiches out and that was it. He also feels that there is no need for a follow up appointment ever as insulinomas hardly ever recur, and if they did, we could pretty much diagnose ourselves at this point. Just something to consider. If you read above, look at how much pain and suffering has been caused by these drains that may just be the old school way to do this. Good luck to you all!
Heidi, what a mess he is going through. If he does not feel well soon do take him back. There is a worry that he is leaking pancreatic fluid and if so he may have to have another drain placed. Mine was in for 8 weeks before my duct healed. Please give him my best and I hope he feels better soon.
Go Mike – and go Heidi!
Believe in the future again! You have got it back! Take it a day at a time. Anything can wait.
John
Thanks John,
The flight day was difficult for Mike, but we are at home now and he is happy to be in his own space, although he is still not feeling at all well. The drain hole (2nd) is still producing pus and weeping a clearish liquid, and he has an appetite to eat, but what little food he does eat is not going or staying down well. I can see the weight loss already.
Our family GP has extended his antibiotics for another week, and has given him Nexium to deal with the acid reflux that came with the antibiotics. She also took a swab from the wound to check it out. I have been to the health food store and gotten him some high pro-biotic yogurt today to try and help with his digestion. No pain though! He hasn’t even had any Tylenol or Advil today and his incision scar is healing very well. I took his temp last night but it was normal, even though he was sweating and shivering. Our GP is on call at the hospital this weekend, so she has given me her pager number if he gets worse and she will see him in emergency. Mike does not want to be put back into hospital at all, but it is still a definite possibility.
Other than that we are doing ok. Even the family pets are starting to calm down again and Colin is clearly relieved that we are back.
Despite the challenges of his recovery process, Mike is so very glad he has had the tumour removed and he has stable blood sugar again. The results will justify the process and he is determined to get better, enjoy his summer, and return to work in September. This is the Easter long weekend, so the weather is just horrific; mixed rain and snow, but at least the snow banks are melting and there is some hope of spring in our future. Oh well, we will just soldier on…..
Heidi
Heidi and Mike – congratulations and good luck over the next few days and weeks. It sounds as if the worst is well and truly over. You had a difficult time but it will seem like nothing compared with the benefits of he cure.
You deserve to have no more setbacks. Keep an eye out for backache and fever which might signal infections – that was my experience and was unpleasant in the extreme and left me, according to my surgeon and my endocrinologist, with ‘adhesions’ which may cause trouble at some future date, possibly years ahead.
Apart from those I have no further complications and they are well pleased with me. They still want me to have some scans in a few months time.
You will want to get back to normal working soon but do take that very easily and seriously. None of us is so important that the rest of the world can’t wait a bit longer for us! There will be days when things hurt a bit, inexplicably, and you will get bored and fidgety. I am told by a fellow insulinomiac here in London that it was 6 months before she actually stopped thinking about it at all. The scars won’t vanish quickly either! I did do some massaging with various oils – but I don’t think they helped! Maybe when the summer comes I shall show them off with pride by the pool when I visit North America to give concerts. We’ll wait and see.
Stay well – and that goes for all reading this!
John
And we are off! The hospital has decided that Mike was in hospital for his crisis already (this is definitely true) so we can go home now. Mother-in-Law is driving us to the airport at 1 pm and the flight is at 3:15 and takes about 1 hour, so we can almost smell home from here. (I hope that isn’t the smell of an unwashed teenager!) He tells me the house is completely empty of food, so I will be turning around and running home to buy some groceries just to get dinner and breakfast organized. I suspect the house is something unbelievable too.
Mike’s got an appetite again, but he can only eat very small amounts so I will have to try and match him, vs the other way around, since my sympathetic stress eating has put me up over 20 lbs too. Well, he is tender and easily tired and all the things he should be post-op, but every day he gets a little stronger. The hole left by the 2nd drain is weeping a bloody pus goo, but it has already tapered off considerably and the super antibiotics ($10 per pill) seem to be working.
Life resumes; Hallelujah!
Heidi
What a great site this is. Thank you so much for your post. My wife has been struggling over the last year and we had no idea what her problem was. She passed out this past summer but her problems were always spread out over time. Around October she passed out at home and we had to call 911. When the paramedics checked her blood sugar it was at 25. That’s when we started our journey. She had another low Christmas day when she couldn’t remember things. We went to an endo on 2/6 of this year. The Dr. said it was reactive hypo and we went to the nutritionist. After struggling to keep her blood sugar in the 50’s the Dr. had her wear a monitor for 3 days. This helped so much in getting her a correct diagnosis. In her first blood test done on day 1 visit to the Endo her pro insulin was high even though her C Pep and insulin were normal. The Dr. dismissed this. After the 72 hour monitor showed such lows he redid the test which came back with the same results. She went in for a 72 hour fast last week. 30 minutes in she was at 56. 30 minutes later she was at 45 and 15 minutes later she was at 43. They stopped the test that day. She is now headed to see the surgeon in 2 days. We were lucky to have a friend who is a retired surgeon who made a phone call to get us seen quickly. I’m assuming she’ll have some tests done and we’re hoping for surgery asap. All of your postings have helped me so much. We are anxious to know what procedure will be done and the recovery time.
Great great news. I am so glad to hear Mike is doing so well. You have been on quite the journey. Safe travels next week and keep in touch and let us know how he is doing. My surgeon said that her patients lose an average of 50 pounds after the tumor is removed. I am holding her to that because I gained that much trying to eat to keep conscious.
Although thoroughly enjoying his stay at the Club VGH Hospital, Mike is just about ready to be released on Sunday the 5th. The new drain was put in on Wednesday, and started to work immediately to relieve his pain and suffering. His temperature is finally back to normal since last night. He is still on antibiotics but has been taken off oxygen since yesterday, and should have the drain removed again tomorrow, prior to discharge. The other good news is that he should also be allowed to fly on Tuesday, as long as he rests up on Monday, so we can go home!
What a challenge; 18 days and counting since surgery day. But the real recovery will start once he is in his own surroundings, with his own family and pets as well as having his normal diet available again. He has lost 6 kg so far and figures that is the start of a good thing. Of course, I will have to do my weight loss the old fashioned way. And I have certainly stress-eaten my way though this process I can tell you!
Thanks for being there thinking about us and giving us encouragement – it has meant a great deal to all of us…
Heidi, Mike and Colin!
It looks like they are not through with me yet. My MRI showed a significant stricture of the duct where the leak healed. The decision is to try a stent in about a month to dilate this area. If successful there will be a sucession of stents progressing to bigger diameters to dilate the area. Mu surgeon assured me there are other options if the stent cannot be placed but hopefully that can be done as it is probably the best option. Other than that I am doing great, back at work, and just some discomfort where the drain was removed.
Heidi, my thoughts and prayers are with both of you during this very difficult time. I hope the drain placement was successful and they can start getting that fluid drained out. He has to be miserable and you must feel helpless. You are both due for some good news. Thanks so much for keeping us so informed with his progress. It will all be worth it once he has progressed beyond this.
Heidi,
So sorry to hear that Mike is having a hard time of it. Please let him know that we are all pulling for him and hope you will be able to go home soon.
Jackie,
That must be a great feeling to get that drain out of you and hope that the pain is subsiding.
I have a question for you post-operatives: Sometimes I get a tightening feeling just below my sternum. It usually comes after I have inadvertently tightened my stomach muscles I think – for instance, if I slip on something, so perhaps it’s a kind of muscle spasm. It isn’t painful at all, just distracting. Does this sound familiar to anyone out there?
Hi everyone,
Mike is currently in the CT lab, having his drain re-inserted. He spiked a fever on the 31st, and when they tried to put the drain in at the ultrasound lab, the radiologist said she couldn’t see clearly enough to do it safely, so she referred him to the CT to try it, but it was too late in the day to get on the CT schedule.
He went down at 10:30 am today, and I am going to go to the hospital shortly to see the end result. He has been in excruciating back pain for the last 4 days, and he has been put on dilaudid 4 mg every 3 hours by injection to control it. Dr. thinks the fluid pocket is pressing on his back nerves. He is also back on a liquid diet as his gut has quit working again. More vomiting yesterday. He is so miserable! I just hope this drain starts him down the road to improvement. Today is day 14 in the hospital!
Heidi
HI Everyone,
Mike is still in hospital on the 30th. Saturday afternoon, they pulled out his drain which was not working, and it geysered brownish fluid all over the poor nurse and his bed! Then it oozed into a dressing for 24 hours, and sealed itself up. However, this morning, he failed the CT again. The fluid patch has grown, and since the previous night he was having horrendous low back pain so he didn’t sleep. After the CT he came back to his room, and started to have some of his long overdue (and now cold) breakfast, when he made a funny face and started vomiting. By the time he was done, the nurse and I were soaked, the bed was soaked and, of course so was Mike. I have never seen Mike do projectile vomiting before and I hope never to again. They now think his bowel is not working properly, and the fluid build-up is pressing on something that is bothering his back. Good News is that he hasn’t been feverish since Thursday.
Well, that sealed his fate, and having now connected the dots, doctors have decided the fluid needs to be removed (aspirated) in the radiology lab, but they couldn’t find an opening for him this afternoon, and they are fitting him in tomorrow. So there goes another day. Otherwise, Mike is more than ready to make his escape. I do wonder if they will reinsert the hemo-vac drain? Meanwhile, my son is not coping very well at home alone, and I may have to make a dash back there to see if I can get him back on track. I am going nuts! they both need me, and are located about 800 km apart! which one do I focus on?
I keep saying to myself, this will end and we will go home and all will get better……..
Heidi
John, I have not had any back pain. I am still dealing with the pain left from the drain removel and that is a bear. I started antibiotics the day they took out the drain so that is not it so I am thinking any drainage must be irritating or burning that tunnel. I hope they find what is causing yours and you get relief soon. It is not too much to ask to be pain free even though we do feel so much better from the tumor being gone. Feel better soon. Jackie
I had a meeting with my surgeon today – 12 weeks after surgery – and he’s pleased that all’s nearly well though I am getting backache, possibly caused by some bowel adhesions post-op. Has anyone else had this experience?
Some days I have no pain, or short-lived pain. Other days it nags away for hours.
He did consider putting me on a week of antibiotics – but a clear CT scan and blood tests said not. He’ll check again and is ready to have me into his clinic any time the pain gets worse. And he wants me to monitor my blood pressure which is a bit high.
Again, anyone else recognise these symptoms post-op?
I am not complaining! My treatment has been miraculous. I feel great.
He had another insulinoma case a week or two after me – and she only had keyhole surgery and is fine! That made me a bit jealous for a moment – and I wonder if the practice he had on mine benefited her? The answer is, of course, yes! It should always be so! I am sure I benefited from earlier patients, exactly the same. With such a rare condition we each play a part.
Good luck to all.
John
Heidi, you bring up a good point with flying with a drain. I thought about that and wondered about the expansion with the bulb. Pressure can build up inside of containers so find out if that is a concern. You will probably need a doctor’s note for security to say that the drain is not some type of explosive material. We live in strange times. I am sorry his tube was not draining and hope they can get it fixed soon.
Sue, I have not heard of drug induced hepatitis with this particular surgery but it can happen anytime you take meds. It all depends on the liver’s ability to metabolize the drugs. I am so sorry you have had this to deal with. The Whipple should be more than enough to contend with. I was in the hospital for two weeks and thought I would lose my mind. I am so sorry you had an additional two weeks.
Thanks everyone for the encouraging words. It is so great not to have that drain anymore. I can actually wear normal clothes. I go on Tuesday for a MRCP to view the pancreatic duct and make sure all is well.
Jackie! So pleased to read that at last you are drainage free! Well done i bet you are really heartened and feeling more free at last. Heidi, sorry to hear Mike has to stay in over weekend, hoping and praying that news is better next week, this drainage really is horrid, but its great that he has an appetite at last; that always a good sign, lots of love and prayers remain with you.
Sue. You must be so infortunate to get hepatits fter your op. As if its not bad enough going through a whipple; and I know first hand how that in itself is a mountain, but to have drug induced hepatitus after, my heart goes out to you. I have not heard of this happening before, but maybe others have. Take care.
Love to all!
Janet
I had my surgery on Jan.28. It turned out to be a whipple operation. I was in the hospital for two weeks and then went home. Two weeks later i started vomiting and became dehydrated and had to be readmitted to the hospital. After an MRI and liver, biopsy it was determined that I had a drug induced hepatitis. I spent another 2 weeks in the hospital. I am jaundiced and tired and weak most of the time. I have seen a liver specialist and i am taking 40mg of pregnisone day. I have lost 20 pound since the surgery. the doctor has said that it takes time for the hepatitis to go away. Has any else had this experience or know anything else about it?
Oh hospital food !! I found out on day 7 that I had to go on a diabetic diet. I ask the nurse ” you mean the food can get worse” she smiled and said ” Oh yea” Hang in there, I was out on day nine although they wanted to keep me longer
Hey Jackie
having just had Mike go through being held in hospital to deal with his drain malfunctioning, I am beginning to appreciate what you have been going through. You must be so relieved to get rid of your pet and leash.
Right now they are trying to flush Mike’s tubing backwards and re-establish it’s draining function to clear the build-up. I have been wondering about getting him on a plane with the drain still in place – will that violate the 100 ml liquids rule, perhaps? It is hard enough going through security at the airports as it is, I do hope this doesn’t cause some type of hold-up. Stranger things have been known to happen.
However, it is obvious that drains are a part of this process, and it will ultimately pass too. At least it isn’t a bag of urine! Oh how you must get used to the indignities of it all…..
Heidi
Hi again, folks,
Mike did not pass his CT exam and will be kept in the hospital at least until Monday. The CT showed that the hemo-vac drain for his wound was not working and a pocket of fluid was building around the pancreas. On Thursday evening he started showing a fever again, and the doctors made the decision on Friday morning, to keep him in to treat this build-up of fluid further. The fluid build-up is visible under his skin as a 3 inch long bump just above the lateral part of his incision. They have taken out 1/2 of his staples (alternating) and he would like the rest to go now, as they itch. They will do another CT scan on Monday to assess the progress and decide what happens next. Needless to say, Mike is very disappointed!
However, the good news is he has developed an appetite (even for hospital food), his blood sugars are stable and normal, his pain is manageable without narcotics and he has lots of cross-word puzzles and sudoku books to keep him busy.
Take pity on the poor fellow, that was day 8 post-op and he is not having much fun any more. He wants OUT.
Heidi
Jackie – what a star you are!
And how good does it feel…???!!! Freedom from that blasted plastic tubing, the pins and bags, and no more need to see stuff it’s better not to see! Soon you’ll be removing the dressings and washing freely.
Watch yourself – don’t go wild! You’ve not had an easy time – but you are into the better times now! Cured!!! No more ‘episodes’!!!
best wishes
John
I wanted to share good news with all of you. My drain came out today!!!! What a celebration. And how awesome Mike is doing so well. I am happy for both of you. Life will get back to normal and there is nothing like being hypoglycemic free!!! Wishing you safe travels home.
Hi Heidi. I know Dr MacRitchie Well as I see him every three months ( I’m diabetic now) He had told me that there was someone else in PG with an insulinoma last year. My tumour was deep in the middle so I didn’t know if they where doing the wipple or a distial until I woke up from surgury. Thank the lord they only did the distial pancreatectomy ( after bio they found two more) I got back to normal life after about 2 months. I live in Beaverly so where preaty close. I always enjoy a good cup of coffee so when mike is up to it that would be great . Funny but I know exactly what he is going through. will send you a e-mail and you can contact me any time you need to! All the best Mr Kim B
Great news Heidi! Sounds like you’re out of the rough now!
Hi everyone,
What a difference a day makes!
Mike started on solid food yesterday, very small amounts, but he has been able to keep it down so that corner has been turned. Of course the doctors and nurses were very happy that his gut has started to work, and that was when they decided to try the solid food. He was physically and emotionally much healthier looking on Wednesday. He had 1/2 of the staples removed and the drainage has stopped producing, so that may come out today. If things go well today, they may release him on Friday. We would spend the weekend at my Dad’s apartment, and then get a flight home sometime early next week.
Will let you all know the score tomorrow…….
Hi Kim B,
Who knew! We were referred to a Vancouver Endocrinologist by Dr. MacRitchie and then to Dr. Scudamore who is the head of Liver and Pancreatic surgery at VGH/BC Cancer Clinic, as Dr. MacRitchie felt there was no one in PG who had the level of experience needed to help Mike. They only found the location of the tumour in February 09, when he had the endoscopic ultrasound down here. Where was your tumour located in your pancreas? Mike’s was 2 cm on the backside of the head, and was not visible on any of the tests done earlier. How soon did you get back to ‘normal life”? Maybe we can meet for coffee or a phone call and you can tell Mike a bit of your tale of survival? He will be amazed to hear he has a ‘neighbour’ with a similar experience. We live in College Heights and my personal email is hshearman@shaw.ca if you would like to contact me directly. This is just cool to find someone so close to home!
Hi John,
I have been watching your progress with interest for sure, since you are just a few months ahead of us. 12 weeks and living ‘normally’ is a great indicator of how things willl go for us. Especially considering that you were knocked back with your abscess and re-admittance to hospital, I am truly excited for our prospects. Thanks for the words of encouragement.
Heidi
Greetings, Heidi!
Be patient and strong – I am certain these difficult first few days for Mike and you will quickly ease. I can well remember the first days of pain and serious backache – and the first little bits of comfort, the showers and back massages, the first beard trim – and of course the great day when the drain was removed and I could again lie on my side.
I am now, 12 weeks on, back at work and only occasionally suffering any pain at all. My surgeon and endocrinologist are checking me regularly – and I really feel cured!
Be patient and strong… it’s a ghastly disease and a fairly grim process of curing – but it does work. The outcome is worth the pain.
Supportive thoughts and positive vibes..
John
Hi Heidi, Im Kim B ( not the other kim you have been talking to ) I as well had A insulinoma removed in 2006- and geuss what—I live in PG as well. Knowing that this is so rare ( 4 in a million ) what are the chances ! I’m suprised that you had to go to Van for the surgury as I had mine done in PG I hope all is well —Cheers–
Colin and I were up early this am to get Colin on the 8:55 flight back to PG and then I battled rush hour traffic from the airport to Vancouver General Hospital. The traffic in this city is horrendous, as I am starting to remember!
Mike had a tough time last night and into today. He has not been able to keep oral fluids down, and his gut hasn’t started up properly yet, so discussions were held this afternoon on putting the NG tube back in (not Mike’s first choice, certainly). His blood sugar continues to be above normal and he is still getting insulin shots several times a day. They have uncovered the staples (24 of them) to get air on the incision which looks good and they discontinued his oxygen today. He is now down to the IV, the drain, and his catheter. His abdominal pain is generally not bad, but he is in excruciating back pain. He doesn’t normally sleep on his back, but he cannot take the pressure on his belly when on his side so he is miserable in bed. I spent 10 hours with him today and watched him doze in his chair for a couple of hours, head bobbing away as he tried to stay upright, but he wouldn’t get back into bed. I tried to support and balance him with pillows, but that doesn’t work too well really. He was quite low emotionally today, probably as he finds he cannot get past these challenges easily and he is not in a comfortable place.
The highlights of his days are the regular arrivals of his clear fluid diet, which he can’t bear to eat, tuning into the Space channel on TV for some Star Trek and me giving him a wash and shave. He hasn’t had the strength to read yet. The nurses are very good with him, and are making sure to keep his pain meds up, so he breathes properly, and gets some rest and tries walking a little bit every day.
Therefore, no news of when he gets out yet as there are still a number of hurdles to clear. There is absolutely no way he is going anywhere soon, let alone onto a plane. This could take a while yet!
Bye for now…….
Heidi
Heidi!
Glad that Mike is recovering and is getting through the worst of it. It is a huge op and as as already been said, people don’t realise how big an op this is, but as I have said before to others, althought the first day or two after is very difficult, recovery is amazing once it takes hold, each day you feel so muc better than the day before. My prayers are with you.
Sorry I have not posted on here lately I am doing Grade 8 piano exam tommorrow and it has taken up so much time. I hope and pray that everyone is doing ok and will be back real soon. Love and best wishes to all.
Janet xx
Heidi, it is wonderful that he is progressing so well. I second what Kim said. And the more he can get up and move the less the pain will be. I did not believe them at first because it hurt so bad but it was true. Each time got easier and easier. Best wishes to Mike and take care of your.
Heidi,
Wow, sounds like things are moving along. Great news! Please tell him to stay on top of the pain meds if he is in charge of them. You can feel like you’re doing fine and put it off, and then before you know it you feel like you’re doubled over!! It’s too late and you have to get a shot of something.
Hope you had a peaceful and relaxing evening!
Hi again, Folks
Mike has moved from the high-needs unit to the regular ward this afternoon, after they took out the NG tube. He hasn’t felt like eating (clear fluids available only), but was up in his chair a bit longer today, and the fever is under control. They have started tapering off the epidural meds and are moving him to regular pain meds now. He is still on anti-nausea drugs, as well as IV fluids. His sugars were a bit lower today, but he still needed another shot of insulin. He welcomed a sponge bath from me, and I shaved him for the very first time ever. He wanted to be spruced up as he will start having visitors now that he is in the regular ward.
So, things are getting better and Colin and I are more relaxed now. Colin is going to spend the night with his uncle and grandparents (Mike’s parents are 81/87), and I am going to have a glass of wine and read a novel on the sofa by my self.
Ta Ta for now!
Heidi
Hey Folks, Thanks!
Heidi
Heidi, thanks so much for letting us know how all of you are doing. I know this has been a rough couple of days for you and your family. He will have a couple of rough days ahead but then will get better quickly. I did not have an epidural and am glad he does. The PICC line is wonderful so he won’t have to be stuck for blood draws. I loved mine. Even though the pain was difficult I immediately felt so much better with normal glucose levels. I hope this will be the same for Mike. It is a major major surgery and people don’t realize what an ordeal it can be. Unfortunately both of us had ours in the head of the pancreas. If it had been located in the tail it would have been so much easier. Rest as much as you can. You both remain in my thoughts and prayers.
Heidi,
I’m glad to hear that the surgery is over. This was such a major operation, I don’t think people realize how big of a deal it really is. He is very fortunate to have his loving family looking after him. Don’t be too surprised as his recovery may seem difficult as well. I am surprised to hear about his fever though. That’s never a good thing after surgery. Epidurals are really a God send. Let him know that we feel for him, but are very happy to know that this awful disease is in his past. Have a good rest, I’m sure this is taking a toll on you and your son as well and you will need your strength.
Peggy
Day 1 post surgery:
Mike has a fever and looks it. He is flushed, shiny with sweat and feels hot to the touch. They have taken chest x-rays, and are working on getting the fever down. He was up in a chair for a few minutes, but the nausea was too much and he had to go back to the bed very quickly. His lungs are clear, but he wants to cough – not funny!. He has pressure stockings on, and all the tubes are still in.
His blood glucose was 11 (198 mg) this am, and they gave him insulin – he finds that quite ironic. However, his pancreas has had a bit of a beating, so I am not surprised – at least we know the tumour is out!
We spent only about 45 minutes with him, as he is not much up to conversation at the moment. Both his brothers are dropping by today as well, so I think that will probably be quite enough.
We will be back down tomorrow, and are going to take a quiet evening in front of the TV.
Heidi and Colin
Heidi and Colin,
Wow, sounds like a very long and exhausting day, but that all is well now. Barring complications, recovery will not be as long as it looks right now with your husband looking very fragile and so plugged in to machinery.
You’ve both done an amazing job being there for him. Be patient a little bit longer.
So glad to hear that you are on the way. Thanks for keeping us informed!
Kim
It is just after 10 p.m. and we have just walked into my Dad’s apartment after a very, very long day. Mike’s surgery was delayed to 11:30 am, then to 12:30 pm. Thank heavens I had pushed to have him admitted and put on the Dextrose IV, as he apparently started crashing about 1 hour after we left him last night. He settled down once on the 10% dextrose drip and stayed constant at 5 (90 mg) from that point.
The surgeon called me at 3:30 pm to tell me Mike was just going into recovery and should be moved to the surgical step down ward in about 2 hours. The operation was a success, one tumour removed and the other lesion turned out to be a cyst. The tumour was in a ‘very inconvenient location’ and took a bit of getting at, being located on the back side of the head of the pancreas. He has a drain in to help the pancreatic duct which was disturbed during the surgery. They did an ‘L’ shaped cut – haven’t seen it yet, but the bandages looked interesting!
It took a full 5 hours for him to come up to the ward. Mike’s parents, Colin and I as well as brother, Iain, spent the time pacing, fretting and wondering what was going on. Apparently he was not stable, was having pain and not breathing well, so it took a good while before they felt he was ready to move. He will be in the step down unit (1 nurse per 2 high-need patients) at least until Saturday with another 5 days in the regular ward once he is ready to be moved there.
It was hard for all of us to see him so helpless and frail looking. He has an epidural for pain, a gastric drain down the nose, a drain for the pancreas, as well as an PICC line in the neck for IV and the catheter to deal with all the fluids they keep flushing him with. He is tied down from every angle. He will have the epidural for several days, but is only numbed in his upper abdomen, and will be able to walk with it in due course. They keep checking the epidural by running a bag of ice over him (and he really enjoys that!) They tell me this is the best pain control for the upper abdomen, apparently.
So next step is complete, now comes the hardest part in many ways. This is the first time Mike has every been seriously ill in his life and this is a very new experience for him. I hope his usually very positive attitude kicks in soon, and he starts to bounce back. He was being slightly humorous when we visited with him tonight so I know he can do it.
Colin and I are exhausted and off to bed for now. Thanks for all being there for us! the power of positive thoughts always makes a difference. We appreciate the friendship and support we have felt.
Talk to you all again soon…….
Heidi and Colin
Pamela, I am so fortunate that mine was not malignant. The tissue report said it had developed characteristics that are cancer-like so could not say if it could have developed to that level. So far they have not been able to get a stent in place. Today is the first day the drainage is less so I am hopeful that the fistula is healing on its own.
Heidi, you and your family are in my prayers. We all share your gratitude with this site. What would I have done without it.
Heidi – this seems to be working out so well for Mike at last. Do be patient, though, if the surgery takes longer than 3 hours. That’s the duration for laparoscopy – and there’s no certainty that’s going to achieve the result he needs. I was nearly 6 hours in there, laparoscopy wasn’t successful, needed big surgery – and 10 weeks on I am stronger than ever before, cured, no pain – and back to full work.
They might as well get it done right after all the faff you’ve had! Just be patient… a few more hours, that’s all.
My thought are with you.
John
Hi everyone, we are in Vancouver and things are getting interesting!
We were in the pre-admission clinic this morning when I asked, just how they expected him to complete the required bowel cleansing and fasting when he would become hypoglycaemic within 2-3 hours and would be a complete mess not long after? I said I could see calling the ambulance in the middle of the night to get him down to the hospital, since I certainly can’t lift him. The anaesthesist who was checking Mike out, then said, “Oh yeah that will be a problem in this case, won’t it?”
She then sent the staff nurse on a hunt for Mike’s surgeon (who was in surgery at the time) to request that Mike be admitted to the hospital today for monitoring and a glucose IV overnight. They eventually got it all organized and he is checking in at 7 p.m. tonight. He goes straight to the OR admitting first thing in the morning (5:45 am PDT). I am much relieved, as are the rest of the family!
They are hoping he will only need to stay in for the surgery day plus 3 days, and the operation is planned for about 3 hours. So far, so good!
Will touch back again sometime tomorrow, when I get back to my computer……
Thanks again for your support and best wishes. The doctors and nurses have all said I am very well informed and I credit this blog with most of that knowledge.
Heidi
Jackie
was your tumor malignant? Hows the stent feeling?
Does anyone really know what the chances and how often are there is to have a reoccurrence with these tumors, malignant and benign?
Heidi,
i am so sorry to hear about your kitty cat. I have lost a very loved animal before…. and it is heartbreaking. hope you all the best in Mikes surgery tomorrow, your in my thoughts and prayers.
xoxo pamela
Kim, mine was just the same as the Justice’s. It was found by CT and it was just 1 cm. I was shocked they found it so easily. So maybe location may be part of the issue.
Dear Heidi & Mike,
Looks like you’re two days out – just want to wish you all the best. Do keep us posted! I’m thinking of you!
Kim
Hello everyone,
I was just reading about Justice Ruth Bader Ginsburg. I find it interesting hat her tumor was found by CT scan and it was only 1 cm. We seem to have had such problems finding our tumors and they are usually (a bit) bigger than that. I wonder if cancerous tumors are easier to find for some reason.
Best to you all,
Kim
Is stabbing back pain a symptom of insulinoma?
Thanks so much folks, your info has been helpful. Clearly the assorted methods have worked despite being different, so we will just see how it goes, and if necessary I will take him to the ER and they can deal with it!
It has been a sad weekend in our house. Our 17 year old cat, Clara, had to be put down today, as she was developing acute diabetes on top of an existing thyroid condition. It has been very hard to say goodbye to someone who as been a part of our lives, even before our son was born. Our hearts just ache right now. Bloody pancreas and its diseases are a bane of my existence these days!
Well, Mike is an elementary teacher, and teaches computers to all 425 students in his school. So he as been working on a short presentation to give to all the classes this week to explain what has been happening to him, and why he will be away until further notice when they get back from their week holidays. They already know something is up, since he has been away so many days, and always has his OJ to sip while he teaches. Some have also noticed his weight gain too.
Well, just 10 days left until we get the ‘cure’.
Heidi
Heidi
I was left without anything on my night before the op but was booked in first thing in the morning (my argument was I would sleep normally and didnt need anything usually during the night) – which ended up as 12 ish, but they put a glucose drip in at 4 am anyway just to make sure. However the doctor the day before had told me they were putting me on an insulin drip – you may have read that already – at which point I declined !! (slightly strongly) and told her if she wanted me in a coma that would be fine, so she went and read my notes! – on that note always be on the ball as their communication is not always what it should be, I had a few problems with the NHS here with things like that, so I was always asking questions and looking things up!
I have follow up appointment every year – as, wait for it, I was so young to have an insulinoma and it could come back though unlikely!!! I was just chuffed to be described as “so young” ha ha, what ever it was!!! I have blood tests and a little chat and thats it for another year!
Im not far out of London so its no problem for me but I can imagine that having to fly and stay for a “little chat” could be a pain.
Have fun!!! good luck
Angie
Heidi, my surgeon refused to admit me the night before. He did tell me not to follow the pre-op instructions I was given by the hospital though. I am pretty sure I ate normally all day, I could eat some food until Midnight, then nothing after midnight except glucose gel (yummy). I even had the glucose gel driving to the hospital and waiting to be admitted. He put no limit on the amount of gel I could have. His contingency plan was for me to go to the ER if I could not keep my sugar up and they would put me on a drip. It worked fine, though the gel is disgusting.
As for follow up, when I went to get my stiches removed, I asked about a follow up appointment and he told me “you’re cured”, no need to make any other appts unless I had unexplained symptoms in the future. Kind of funny, but it makes sense. Any of us would know if the symptoms came back so why waste the time/money doing unnecessary follow up.
good luck!
Laura
Heidi, you do need to be a control freak and ask questions and be on top your game. I am a nurse and my sister is a nurse and she came to stay with me in the hospital. I felt more at ease with another set of eyes making sure everything was done correctly. So control away. John is blessed to have you. I did not go into the hospital the day before and had to be on clear liquids all day plus the bowel prep. I had glucose tablets with me all day and I took the day off from work. It was a tough day. All that sugar made me feel sick. So, I think if he can go in the day before that is the best.
I had my stent attempt and it was unsuccessful to a degree. The MD was not thinking he could do much after looking at my prior films but after the procedure he was much more encouraged. Even though he could not place the stent he was able to open an area that had collapsed and would help the drainage to resume normally. We have a plan. My surgeon backed out the drain as far as she could. The drain was causing issues with the stent placement. I am to drain to gravity for 3 weeks see what healing happens in that time. Then I see the Endo physician in his office to see what the next step will be. I think he still plans to place the stent and he seemed really encouraged that it would be possible. Boy, this has been a journey of two steps forward and three steps back.
Heidi,
I am so terribly sorry to hear about your mom. That must have been terrible. I do not entirely agree with John. Usually doctors know best, but they can miss things, they can make mistakes, they can’t always know everything. Its best to trust your instincts and to be on top of everything that’s done at the hospital. Your husband needs an advocate and you sound like a good one! I encourage you to continue your control freak tendency – but to channel it. My brother was having his appendix out and they prescribed some important medicine for him, but it never came. My mother was and realized the problem and made it happen. He would have been in big trouble if not for her intervention.
Thanks again, Kim
I am the official Fretter in the family. As a financial planner, my life circulates around planning for worst case scenarios and I research things until I understand them, then I worry about them. Mike is a non-fretting type of guy – mellow and easy going for the most part, so he just goes with the flow – which is probably how he has survived this experience so well. I hate leaving things to chance, if I can find a way to control them. Unfortunately, this has not been a very controllable situation and it drives me nuts.
John is right, the doctors do usually know what they are doing, however, with my Mom’s recent and painful death from incorrectly diagnosed cancer, I have become very vigilant when dealing with medical people, since they do make mistakes. They always well-intentioned, but wow, when things go wrong, it can be very deadly. I will not leave things to chance, if I have the opportunity to control them. Just call me a control freak!
Heidi
Hi Heidi,
I know only to well how hard it must be for you to carry the weight of Mikes illness around daily,nightly, hourly! You love him, and we all do not want to see our husbands, wives, children suffering. My sickness not only took a horrific toll on me physically and mentally, but put a tremendous amount of stress and strain on my husband. He called me, and checked on me constantly… sometimes he would have to call someone over, or rush home because i did not sound right on the phone, no matter where he was at. Surgery is a very scary thing… and somehow sometimes i think men have a bigger fear of surgery than woman.
I cannot answer a-lot of your questions, except for that i requested to be admitted the day before surgery for the very reason of not wanting to take any chances of a sugar drop and ending up having to eat or drink something and ruining my surgery plans. My surgeon agreed. I think you should ask them to do the same. I was admitted around 5:00 p.m. and my surgery was the following day at around noon. We are all rooting for you and Mike, and look forward to you writing in on all his progress and newfound health!
oxox Pamela
Heidi,
My puppy ate the pages of my calendar when the operation was! I think I was in hospital for about 5 days and then a couple at a hotel. My surgeon wanted to have me come back down for a CT scan after a month but I said no thanks! I’d had enough scans and if the first several weren’t able to detect the tumor I wasn’t sure what this would accomplish. Maybe that was not smart of me but I seem to be doing fine. Again, I had no complications with drains or anything internal. I had a check up with my general doc and also with the endocrinologist who diagnosed the insulinoma in the first place.
Take one day at a time – don’t try to hard to solve things before they happen. It will all work out one way or the other. I’m sure you must be stressed, especially with lack of sleep, your son to worry about and the distance to home. It will soon be behind you, and spring is on its way!
Wow, doesn’t this just show how different our various surgeons, procedures, and medical systems can be. I am going to ask (firmly), that Mike be given a glucose drip the night before, even if I have to do it myself!
This morning he was 3.1 (56) at 7:30 am. and that was with a PB sandwich at midnight. He doesn’t get up in the middle of the night to test and eat, because he doesn’t go back to sleep afterwards, and that has been even harder, but man he can be low in the mornings. If it is not a work day, I always seem to wake up first and nudge him to see if he is ‘there’. Luckily he hasn’t been as bad as some of you, who don’t wake up on your own in the mornings.
Something else I have determined, is that because he has put 40 lbs on in the last 10 months, he has developed sleep apnea, which cannot be good for his exhaustion. Some nights the snoring drives me into the spare bedroom! Sometimes he wakes himself right up with the snoring, but as soon as he rolls over, it starts again. I will not miss this interesting side effect either.
Those of you who had their surgeries in locations far away from their homes, who folllows up after you get back to home base? The family doctor? I am wondering how long until we will be able to fly, after he is released. If he ends up with a drain, would he need to stay close to the surgeon, or can that be followed at home. I realize this is probably very dependent on his particular situation, but we are not booking any flights home, until he is cleared to go, but I also don’t want to leave him down there, or leave my son at home alone for too long either.
These short haul flights are so expensive on short notice. It only takes 1 hour to fly between Vancouver and Prince George, but it takes 10 hours to drive, and worse in winter highway conditions.
Can you tell my anxiety keeps rising? Mike just internalizes everything, and I jsut get more and more stressed out. I have had several surgeries in my life and never had any serious complications, but somehow it is worse now that it is someone I love.
Thanks for all your support!
Heidi
I really wish you well, all those who are about to go through the surgery, and your partners! It is so so worth it…
I have checked with my wife to be sure I am reporting correctly – and my experience before the op was much less dramatic, demanding and drastic than some of yours.
I was booked into the hospital the night before surgery, 6pm to be precise, given some light supper and allowed to snack again (cereal bar and banana) before 10pm. Then they monitored my blood through the night and placed a cannula in the small hours, putting me on a glucose drip. That was that – no enema, no weird drinks, no hypo either.
At 9.30am I was taken off and prepped and the operation began around mid-morning.
Looking back, it occurs to me that it might have been good to empty my bowels. After all, I did get a post-op abscess and who knows whether that was generated internally? We’ll never know! It was an e-coli bacterial collection and very very painful – but that might have happened anyway. And they dealt with it very quickly.
9 weeks post-op, I can report that it was definitely worth it, whatever they did to me. I am having a check-up CT scan on Monday, just to reassure me that the abscess is completely gone, and to check out some nagging backache and internal tugging feelings. These symptoms arose as soon as I went back to work! I should have waited another week or two, maybe.
I’m sure surgeons everywhere have different approaches. I’d go with whatever they say. They won’t let you suffer unduly, surely – and they won’t want to let you down. Their reputations are important to them – and us!
My good wishes and good luck!
John
Hi Heidi,
If you go far enough back there has been some discussion around this. Some people were admitted to the hospital the night before and given an IV. Some were allowed to eat until midnight. I think I had to do the clear liquid thing from 7pm on. I was very nervous about this but the surgeon insisted. I was staying in a hotel and we asked them to make a ton of Jell-O. I woke up I think it was every hour throughout the night and slurped down a large glass full of Jell-O (it wasn’t very firm). In case my blood sugar dropped too far we planned to call the ambulance and run to the emergency room, but I didn’t need Plan B – the Jell-O worked. Man, I still get ill when I see that stuff!!!
I was a zombie the days before the operation – it was all just too much to contemplate I guess. I just did what I was supposed to, said hardly anything, stared at the walls. When you’re running on empty, this big thing is about to happen, and the thought that it would all be over soon was all just kind of overwhelming.
Be patient. Things will change and be better. Hang in there. I know its been a long and challenging haul. Its so hard to describe how terrible and strange this thing is. Your brain is really affected by it as well a your body. Hang in there. We’re all rooting for you guys. It won’t be long now!
Kim
Hi everyone,
I had a question regarding preparing for surgery. I was just reviewing a sheet Mike’s surgeon gave him asking him to “cleanse his bowels” by drinking “Citromag” and only consuming clear fluids from noon the day before. I did this last year for a colonoscopy and it was bad enough for me! However, this seems to be very problematic for Mike, as I doubt sincerely he will be functional for any length of time on clear fluids. We have a pre-admission appointment at the hospital the day before at 10 am, for blood tests etc, so I will confirm then that they want this done, as well as getting Mike to call the surgeon’s office. Our medical system doesn’t usually check in patients the day before, you just show up 3 hours before the surgery is to start.
I wonder if any of the rest of you had the same issue preparing for the surgery?
Man oh Man, I can hardly wait now. Mike has just about shut down emotionally. He just sits and watches TV. He doesn’t remember details or conversations, can’t help in the house, and is driving me nuts. He is miserable and so am I. I realize this is the illness, but it is just so hard to deal with every long day.
Please make it all end!!!!!!! Soon.
Thanks,
Heidi
Jackie,
i am hoping all went well with your stent placement and you can go on with the full recovery that you have been waiting for! i have got my fingers crossed! Best wishes!
Pamela
Thank you all for the advice. There is so much information. On Monday when I had the low sugar I ate and my husband gave me a little juice to correct the low. My sugar went up and within 20 minutes it crashed again. It takes me awhile to recover from the crash. When I was in the ER a month ago I was admitted because they gave me pure glucose by IV and food and my sugar went up and then crashed really low within less than 30min. I just don’t know.
Pamela-Thank you for the website on the non-beta cell tumor. I truly appreciate your care and research on my behalf. I looked up the info and definitely will ask Dr. Singer about it when I speak to him next week. He is out of town and will return next week. He gave me a number to call him so we can discuss my chart since I am a new patient.
The low sugars and the length of my low sugar episodes are really altering my life. I have had low sugars everyday this week no matter what I eat or how frequent.
Thanks Again everyone
Pamela, you may be onto something. A non-beta cell tumor could be right on. There is something causing over-utilization of glucose and there is a tumor. Stacy, I would print out the article and take it to my physcian and ask if this could be a consideration. When I went to the website I used the google search choice and it was the first link for the dreddyclinic article that was listed. You probably don’t need help with finding stuff but sometimes I get lost in all the choices. Wow, how great this would be if this would lead to answers for you.
Tomorrow I go for the third stent placement attempt. I would appreciate your thoughts and prayers. My reserves are a bit depleted for this one. I can never repay all of you for the support and encouragement you have given me. You are all angels in my book.
Stacy,
i was reading on a website about hypoglycemia and causes….. The website was
http://www.dreddyclinic.com and then type in hypoglycemia and go under causes…. One of the paragraphs under causes says how an insulinoma is a beta cell tumor and there are other types of tumors called Non-Beta-Cell tumors. The definition of this i will copy down and is as follows:
Non beta-cell tumors:
Hypoglycemia may result from tumors other than a beta cell tumor of the pancreas. Some tumors don’t cause an overproduction of insulin, but cause excessive utilization of glucose by the tumor or they result in an over production of insulin LIKE SUBSTANCES. Elevated levels of these substances cause hypoglycemia.
Reading this i am trying to understand it, and wondering if any of it can be helpful in some way???? Maybe it is why your tests show your insulin levels to be low… and it is an overproduction of another type of insulin like substance that is causing you to have the hypoglycemia. And could that 7×7 growth that you said your doctor said you had on your pancreas be a non beta cell tumor? Anyone correct me or give me your feedback… i have no medical knowledge, and i know some of you have teaching and nursing degrees. Maybe if you can read a little more on that website it could be helpful. I just wanted to read on why your sugars and insulin levels were low. I remember when we did the blood work to test my insulin levels in my body, the endocrinologist said the insulin levels in my body were off the charts! Hope you can get this figured out soon. What is your next step… Appointment??
Pamela
Stacy,
I cannot remember exactly the details of my 72 hour fast, but i do remember that my sugars were bouncing up and down the same way you described, it started out at like 58 and went to something like 45 and then back to something like 52…. it was one of those weird sugar days. You can never predict what was gonna happen. I was always thankful i was a stay home mom, because if i would have had to work, i would have never been able to keep a job due to how bad i felt after a really low episode. Sometimes i wouldn’t even realize it was hitting me and someone would have to almost force me to drink orange juice or dr. pepper, because for some reason i would deny that i was having low blood sugar. For me it took a-lot of carb, and sugar to keep my sugar up all day. There would be some days where i would drink up to 5 dr.peppers! no fun! I am so frustrated for you! Like Angie says… dont stop or give up until you get this figured out!
Peggy,
I hear you on being insecure in the past… everything was scary to do or go anywhere because i constantly worried about my sugar! I would absolutely love to see you and Suzie! We will plan that!
Also to Stacy, If you need to ever talk, you can have my number as well.
Stacy,
I have to agree with those above, I never missed a day of work due to my sugar. As soon as I ate, my sugar always came back if not instantly, definately within a half hour…. As for the 72 hour fast, your sugars were undoubtedly low, but it is my understanding that what they are looking for is sugars that keep falling. Because yours bounced up and down, that could be an indication that you have something else. Good luck to you in figuring it out!
Laura
Stacy.
I so hope you get this sorted soon. I must echo Angies’ thoughts about the length of your episodes. Like Angie, if I feel odd i have to eat immeditaley and recovery is quick, in fact I feel like a different person within minutes. Sometimes I am unaware and that is certainly more of a problem, its like denial, and obvioulsy if its in my sleep then that ha been a mojor problem. I hope that these doctors make a diagnosis for you soon, as Peggy points out , insulinoma often acts differently and nothing rus really typical that is why it is so difficult to diagnose sometimes. My thoughts and prayers remain with you.
Love Janet xx
Stacy
I am concerned about how long your episodes last!
I dont know about anyone else but as soon as I felt “odd” I knew my sugar was dropping and I needed something to eat. Occaisionally it took me by surprise but as soon as I realised I could nt speak properly or my eye sight got worse I would eat something, anything and within a few minutes I would be recovering. Sometimes it would take a while but never any longer than an hour. I am not saying I felt great but certainly could carry on.
I only knew I had insulinoma a or something serious 10 months before my op so I lived with this condition not knowing anything was wrong for years. Just that I was so tired all the time, but with two young boys and terrible sleeping habits I thought that was my life.
You may not have insulinoma but really you dont want it either! It could be something that is easier to treat. I know that I worried when things looked that it could be something else as you hold on to the diagnosis you originally hear. As long as they find what it is and give you some answers, push again and again – dont stop even if you think they are getting annoyed with you. Its your life not theirs so really go for it!!!
Good luck!!
Angie
Stacy,
I feel for you more than you know. Having to live with low sugars is by far the hardest thing I’ve had to deal with. No one understands just how hard it is unless they have experienced what you are feeling. Thank God that you have a supportive family!
It does look as if your insulin levels (proinsulin and C-peptide) were too low to have an insulinoma. However, these tumors are not consistent…sometimes they produce insulin even when your sugar is low, and sometimes they do not. I’m curious how long your fast took, and also where it was performed. Hopefully you can have the 72 hr fast redone. (they would only re-do mine after a year!)
I know keeping the faith can be a struggle. I’d like to share with you a few things that helped me deal with doctors, etc. If you’d like to talk, maybe you can get a facebook account and I can privately message you my phone number. I wished that I knew how to do that when I was going through this! You must not be too far from me….?
Pamela,
If you come down soon, let’s see if Suzie wants to meet up!
You know, as much as I wanted to see people, when I was in my lows I was too insecure to follow through… I’m over it!
Let’s get together.
🙂
The low insulin level would be the concern for me. But I am not a physician so can’t say anything about what it all means. But usually when your sugar is low and you are producing insulin then it is a problem. Your symptoms sound horrible and I can’t imagine what you are going through. Keep looking for answers and you are in my prayers.
Hi everyone
Pamela and Kim- My doctor said he is currently treating a male patient with an insulinoma. It is so confusing for me because I thought based on what I have read and learned about insulinoma that is what I had. My insulin levels during my last 72 fast my insulin level was < 1.0, proinsulin was 3.0, C-peptide 0.25 Honestly I do not understand. My glucose varied because they took it every 30min to an hour. It was 56, 37,58,63,57 and they sent a reading to the lab that was 48. My endo at the time of the 72 hour fast said my sugar needed to be under 50 to get an accurate reading. He explained so much that day and told me my levels didn’t show an insulinoma. Do either of you understand these levels?
I had to call in to work today because as I was getting ready early this morning I felt sluggish. I checked my sugar and it was 60 but I knew it was dropping. My husband told be I became incoherent and it took him awhile to bring be back around.
I am so tired of this. I am going to request that Dr. Singer re-do as many tests as he can. He wants to consult with the endo that referred me to him, but I just want things done over. I cannot live like this. There was no way that I could have worked today because I did not know who or where I was. I am really down today. I have faith it just gets really hard sometimes. Thankfully I have a large and supportive family and my three year old is with them since my sugar is going up and down today. Dr. Singer will be out of the office all week, so I will call him next week to let him know what I need. I just want answers and a solution.
Stacy, I agree with Angie, the first time I noticed symptoms of my insulinoma was when I was nursing my second child. I blamed it on the nursing and sure enough as soon as I stopped nursing, it got better. (Turns out I got pregnant almost instantly when I stopped nursing as well!) I had no symptoms at all while I was pregnant. when my third child was born, the symptoms started again. This time I was expecting it and I blamed it on the nursing, but when I stopped nursing it did not go away that time. bottom line, I had the tumor thru at least 2 if not 3 pregnancies and I never had any symptoms when I was pregnant. My own dime store doctor thoughts about this is that women are prone to high blood sugar during pregnancy so the tumor has less of an effect because you are starting so much higher. If you want more kids, I would go for it! Just be aware that nursing is tough…
good luck!
Laura
I might add that the proinsulin count is an important factor as well. It seems to me that the blood count is the important diagnostic (much moreso than a mass on the pancreas) because there is never a situation where one has high insulin or proinsulin AND low blood sugar unless there is an insulinoma pumping out insulin willy-nilly.
Yes, Stacy, it would be interesting to know what those numbers are.
Jeez, we have really been thru the ringer haven’t we?
Stacy,
Being that there is a growth on the pancreas, and you having all the signs and symptoms i think you need to keep pushing for answers, or even get another opinion like John said. It just does not sound right. What were your c-peptide and insulin and blood glucose levels? Dont give up… i too , was told i had reactive hypoglycemia, and went to several nutritionists and dieticians… it took me 3 endocrinologists, several scans and several different doctors to read the scans in a five year span.It wasnt until i became more and more sick and and got tired of living the way i did that i began to push to get the answers i needed. For me pregnancy wasn’t so easy. With each of my two pregnancies it seemed to make my sickness worse. It became harder for me to keep my sugars up, and the fatigue was awful. At five months pregnant, i was pulled over by a police man because he had several people call in that there was a drunk woman driving all over the road. Once he pulled me over i was so confused and making no sence he called the paramedics who read my sugars to be 33. Very scary! Has your Dr. had other experiences with insulinomas?
Best of luck to you, i hope and pray you get the help and answers you need soon!
Pamela
Stacy
I dont think I can add anything much to what has already been said.
One thing tho, when I had my op they still had to analyse the tumor to make sure it was the right one that was causing the high production of insulin. So if they really cant be 100% sure until then, after all the tests they did, it makes you wonder – obviously they are covering themselves all the time.
Also it is possible that the insulinoma can be in other parts of the body – this may sound wierd but that is why they can do calcium infusion tests on the whole body rather than just the liver and pancreas. They nearly did this on me by mistake.
A calcium infusion test stimulates production of insulin, they flush the arteries leading into the pancreas and liver separately and take readings which show any increase in insulin production so that it indicates where it is coming from and hopefully confirms the tumor in question is responsible. I have no idea how they do the full body!!!
I would also want to know if the growth they have found is dangerous or just a benign nodule.
As Peggy lived with hers for 15 years trying and trying to find out a solution I would echo what she says and keep pushing for more and more answers.
By the way – I had no problems with my second pregnancy and I must have had the insulinoma then. If you want another baby Id go for it when you want to especially as the doctor had no reservations. Some how the body copes quite well and I dont think anyone on here has has much trouble in fact I think most people have had less symptoms – dont take my word for it tho!!! Good luck!
Nicolai
Your diabetes query, I was warned that as the pancreas is a very delicate organ any messing about with it can be tricky and it couldnt be ruled out that i may become diabetic. However so many people seem to have part of it removed and all is ok I think its one of those warnings like the risk of having any anaesthetic! They seem to prefer managing diabetes rather than insulinoma!
Regards to all
Angie