Vanessa,
We have spoken before, and I really appreciate everything you had to say, and I will look into it.  I am really gunshy about even meeting with another pain doctor.  I just feel like I coast from week to week somehow.  I am back at work, which has been great for me mentally, not sure how it will be physically.  I am afraid to eat at work because of the possible repercussions, yet I don't want to lose anymore weight.  I did request an appt at the Mayo Clinic, we will see if that works out.  I am that desperate at this point.  I often steal/borrow your quote about medicine being "practiced", I love it and it is so true.  I don't knock the great doctors I DO have, but there are some that make me wonder, geeez!  I hope you are doing well these days, keep me posted.  I think I sent you a friend request, I'll have to make sure you are on my list :)

I have lost 245# dince my RNY surgery at Hershey, PA in 2001 (before Dr. Ku went to Wyomissing). I lost all this weight and didn't start showing signs/symptoms of Nesidioblastosis until 1-1/2 yr. ago. I have since been to Hershey Medical, York Hospital, Johns Hopkins, and University of MD to find, first of all, an Endocrinologist who would listen to me (I even went back to Dr. Ku for help). All but the one at UMD kept telling me that I had to eat mega Complex Carbohydrates which would send me crashing into LBS (low blood sugars). I was having fainting, sweats, headaches in the middle of the night, shaking, confusion, and even had driving privileges taken away from me for a while. They finally diagnosed me with Nesidioblastosis and (possibly Nesidioblastoma). they were saying that it was caused by the RNY but that didn't make any since because I had gone 7 years without any complications. Finally, my endo worked in conjunction with the Oncology Surgeons at Hershey, and after a solid year of tests, different medicines (some in the trial stages), they decided to perform the Pancreatic surgery. They told me that they were taking 2/3 of the pancreas but ended up taking 90%, my spleen, and some of the intestine that was "stuck" to the other organs. they decided at that time that my Nesidioblastisis was not caused by the RNY.

I had this surgery in August, 2008, and was fine until I got more active. then it all started again. I am now in the process of going through all of the above, again. I have sent a spread sheet chronicaling every bite I eat, when I eat it, what the reaction is, BS (blood sugar) levles before, 1 hour after, and 2 hours after I eat, exercise and BS reactions, and if I wake up in the middle of the night. There has been no reason and no telling when my sugar will drop. I can't eat fatty things at all, even have difficulties with Olive oils in cooking. The only thing that is consistent is Low-fat, low-calorie cheese, I carry it with me at all times (the normal sugar could send me into a roller coaster of BS problems all day).

the same Dr. are confused and are talking about complete pancreatectomy, which scare me because of Diabetes.

Hi Kathryn,
My name is Tammy, I have also been having trouble with pain in my left side which is severe at times. I have had a cat scan and endoscopy which both came back normal.  I have an appointment with a gastro specialist on April 2nd, so far my PCP said she ws looking for issues with my liver, or pancreas ( but blood work came back normal so prob not that) and scar tissue or adhesions of the remnant stomach to my liver, pancreas or intestines.  I have read others post regarding issues with the remnant stomach ( the large portion that was disconnected) filling with stomach juices and becomming inflammed to the point where they finally had it removed and problems were solved, the other issue I haev heard about is they say after losing so much weight our bellys create pockets of empty space that USED to be filled with fat so while our food is going thru the intestines they sometimes slide into these pockets causing severe pain, which is what I suspect is happening to me, and this is very difficult to diagnose unless its actively happening and unfortunately the people that WERE diagnosed with this were only diagnosed after years of searching for the cause and finally going in for an exploratory surgery OR when thier intestines ruptured and had emergency surgery.  So what I've concluded from the research I have done is this is a potentially serious thing and not to be take lightly. I am going to give you my email , I would love to hear how your doing and what results YOU get and I will relay the same to you if your interested. I wish you all the best....Tammy   ([email protected]) 
PS  This may not be related but i noticed when i stopped using splenda and sugar substitutes that the pain was less often actually was almost non existent, and 2 days ago i started using splenda again and yesterday and today the pain came back with a vengence, I'm going to play around with it and see if there could be a relation there,  who knows, at this point I'll try anything!  lol  good luck to you  =)

Hi , I had my surgery 8-25-08 I had a leak and ended up in ICU for 45 days in a coma on a ventilator. I spent 4 months in the hospital total. I still have 3 drains that are hooked to suction machines and am feed through a feeding tube.  Were you able to eat anything while you waited for the leak to heal? I can have an occasional ice chip but that's it. How did you know when the leak stopped? I know how you felt with the drain, my family calls me "smelly" and we have stock in scented candles.

Hi,  My name is Kim and I had surgery Oct. 8, 2008.  Have had lots of complications since then.  Many bouts to the hospital, 7 dilation's, 2 ulcers, TPN and 1 revision.  Have not been able to eat, so hungry. Have a new Dr, who feels he can help.  Have a new dilation and scope scheduled for April 6th.  Does it get better or do I have a long journey ahead of me?  . I know each case is different but looking for some hope.  Have lost 80lbs and only have 20lbs to go.  Any info would be greatly appreciated.

Thanks,
Kim