Made an appointment to discuss revision today

I hope you do not mind me asking - how was that diagnosed?  what tests did they do to you? how long it took to get diagnosis? 

And last question: even if you get revision - the pancreas is not going to be back to normal - so what the action plan?

resection and removal of part of pancreas is sometimes recommended.. what's are your thoughts on that?

I've been through a lot of testing and experimental meds to come to this conclusion (doctor's conclusion, not mine).  I've been to my surgeon and two endocrinologists -- the best one in my town and the best at OHSU who supposedly specializes in patients with nesidioblastosis.  There are a handful of us Oregonians who ended up with it.  I've had lots and lots of blood work, plus an abdominal CT with contrast.  That was fun - I'm allergic to contrast, but didn't know, so ended up in the ER 12 hours later with a swollen face and the hives.  Oy!

We have discussed partial removal of my pancreas to stop the on-slaught of insulin after eating, but that terrifies me.  What if I need that insulin later on in life?  I am hoping that (and this is one of the things that I will need to discuss with the surgeon) restoring a more normal digestive pathway, e.g., pyloric valve and intrinsic factor, will minimize the outpouring of insulin into my bloodstream when I eat.  I'm assuming I developed the tumors and the great excess of insulin due to the dumping of any glucose directly into my small intestines.

Oh!  When I first had the really low blood sugars, they did threaten to put me in the hospital for three days and put me on a fast to see how my blood glucose reacted, but instead, they had my monitor my sugar about 10 times a day -- prior to eating, an hour after, and two hours after.  Also first thing in the morning.  Based on the graph of my reaction to food ****pt a journal, and my meter has a memory), plus the other tests, they decided the hospital stay was unnecessary.

Well, I did have an appointment with the nurse practitioner in January, but they just called and the surgeon wants to talk to me on the 10th of December.  Hmmm.  Probably to dissuade me from my requested plan of action.

Hi Linda,

I know you have been battling this for a long time.  Good luck to you and let me know if there is anything I can do to help.  

Take care,

Kathy