Nesidioblastosis

  I will be 7 years out from RNY next Wednesday (9-15-03) .. and after having approx 8 seizures (grand mal) since approx 2004 .. at first they thought it was due to "dumping" but since I am this far out and my blood sugars can dip to the 20's 8-10 times or so a week they have done additional tests and tried to change my diet .. etc .. but since nothing has changed or helped they have come to the conclusion (My endo Dr and PCP and surgeon) that it is non insulinoma nesidioblastosis .. And the next step is to have part of my pancreas removed .. this will be done next month .. I know of the "dangers" of the surgery and know that if they don't take enough I'll still have the same problem and if they take to much I'll be insulin dependent for life .. but right now anything is better than having the low blood sugars and eating glucose tabs or eat certain foods to bring it back in order to avoid having a seizure .. but when I had the CT scan done I was told there was something about my gall bladder .. maybe stones or something .. not that I have felt bad or anything .. so a sono was done on my gall bladder .. not sure of the results but know they were thinking of removing it too when they do the other surgery ..

My question is this .. or questions .. If anyone has had this done how did you feel afterwards?  And what side effects will I have if they do in fact remove the gall bladder?  Will I again need to change what I eat?  I have gained some weight back due to the ups and downs of my blood sugars so was told I should be able to lose some of it again.  Even though Dr's have told me somethings am still not sure what to expect and thought if anyone has had this done for this reason what their side effects or results were ..

Thanks, Rhonda

I had my gallbladder out. It didn't really change my diet except I couldn't a really big high fat meal without getting loose stools. But these days I can't eat a big enough meal anyway. So I don't even notice it's gone.

Thanks for your reply .. I just wasn't sure what to expect .. have heard of others having had their gall bladder removed shortly after RNY .. but never had any problems or issues myself .. except for this nesidioblastosis which is due to the RNY .. but is rare .. so wasn't really sure what to expect with either of them .. I'm sure they'll tell me more before my surgery in Oct .. again, thanks, Rhonda

Almost a year to the day after my RNY, I had my gallbladder removed.  I had tremendous pain in my stomach (right under my sternum (sp?)) around my left side and through my left shoulder.  It seemed to radiate through my whole stomach, back and chest.  It happened after I ate a meal higher in fat.

The surgery was much easier on me than RNY.  I was out of it the first day, the second day I was moving around and still sore.  By the third day I was taking Tylenol a couple of times for minor pain.

Now, if I eat a meal too high in fat, I get the same same type of pain, but on a much lower.  It's  not too bad, but bad enough to make me think twice about eating fatty foods.

I have type II diabetes.  I know that's different that what you have, but I do have to eat something (protein shake, meal bar, yogurt, etc) every 2-3 hours to keep my blood sugar in line.  Now I'm amost 4 years out (9/20/06).  It took a little experimenting to figure out what I should eat and when.  Now that I've been eating this way for a while, my occasional little slips don't seem to affect my blood sugar as severely as it did in the beginning.  Like I said, I know this is different than what you have, but maybe a different perspective will help.  Low blood sugar is not fun!

Good luck to you!

Have you talked to Melting Mama re the nesidioblastosis? She's had a devil of a time with seizures, etc. I believe that she's chosen to not have the pancreas removal this time. She has been considering having a revision to her RNY to see is getting her pylorus back would help with the reactive hypoglycemia.I think that's something I'd consider before having the pancreas surgery, myself.

I had my gb removed today. If this is as bad as it gets, this will be the easiest surgery I've ever had. I've not been given any restrictions on my diet, I tend to stay low fat anyway. Wishing you the best of luck, and I hope they can regulate your bs better.
Take care, Vicky

A woman from Iowa who used to post here named Lyn I think, had part of her pancreas removed and it didn't help. Let me look at the member list but I doubt I'll find her.

I have seizures, no gallbladder, and I'm keeping my pancreas.

I don't want to be insulin dependent. 

I am considering revising the RNY instead -- but my seizures haven't been connected to my hypoglycemia...either.