Hi, sorry you are going through so much.  It really sucks that this surgery that was supposed to "save our lives" ended up disabling us.  Anyway, I have not had the takedown yet.  Hopkins has done three takedowns and I have been following their progress by email to see how it went before I decide.  I have also tried a couple of other medications that only offered mild improvement but the side effects were awful so I stopped.  Of the three takedowns, two have had a distal pancreatectomy like me, they were doing well for the first year and began experiencing a return of hypoglycemia although only moderate so far.  The third did not have a pancreatectomy and the takedown did not help her and apparently she isn't doing well.  I have just recently decided to go ahead with the takedown and they are talking about converting to a gastric sleeve to give me restriction because I am scared of weight regain.  I am an emotional eater and have been soooo depressed through this ordeal.  I really don't trust myself not to resort to food for comfort at this point.  I feel I need the restriction.  I figure even if it gives me moderate improvement it is better that where I am now. 

This summer the docs have had me try a strict Atkins type diet and it does help as long as I am sedentary but if I am active at all I crash.  I need the carbs for energy.  So I am learning to modify it around my activity level.  A combo I carbs and protein just before I am active seem to do ok.  I have to nibble through my walk too.  I don't know how activity affects your blood sugar but even a walk through Walmart makes me crash.  It affects me more than food.  I have to constantly think about what I will be doing and plan what I eat ahead of time to avoid a crash. 

I have been on long term disability since 4/09 and was just approved for SSDI at the hearing level FINALLY!!!!  I had no trouble at all.  It just took so long to get a hearing.  So if any of you are unable to work, it IS possible to get SSDI with this condition.  

I will keep you posted on the progress of my takedown.  Please keep me posted on your condition.  There are medications to try.  Octreotide, Diazoxide, Acarbose, Verapamil.  Some have success with these meds.  They are worth a try before you attempt surgery.  I have been on Acarbose for about a year and a half.  It definitely reduces the severity of the spikes and drops.

Sounds like you have a good handle on your dietary restrictions.  I hope you have a good endocrinologist.  Keep in touch and best wishes.