Lynn,

We just returned from Boston Children's Hospital.  My son had his surgery there not even a week ago.  We traveled there from Utah in order to have Dr Scott perform his surgery.  If you don't mind traveleing for a week, I( strongly recommend Dr Scott.  He pioneered the pial synangiosis surgery and him and his staff have performed over 200.  Look at their website, they even have a video of the procedure.

Hi Lynn,
I'm sorry that you and your family are on this moyamoya journey. It's a difficult one. You asked how many surgeries would make one comfortable? The more experience the better! I chose the neurosugeon with the most experience and the best success rate, i.e. fewest complications after surgery. I had a choice between a neurosurgeon with about 150 cases and one with 450. It meant traveling out of state, from Washington to California. My insurance, Blue Cross Blue Shield paid because it is a rare disease and they understand the need to be treated by an expert. The lodging costs were significant, but when considering it was my brain at stake, it was well worth it. Dr. Gary Steinberg at Stanford Medical Center did a great job with my surgeries 3 1/2 years ago. He performs surgeries on both adults and children. Many have traveled across the country and from outside of the country to be treated by him. Hope this is helpful.

[quote author=38342F2F202F23202338410 link=1295280939/2#2 date=1295298518]Lynn,

My daughter had her surgery with Dr. Jodi Smith at Riley Hospital for Children in Indianapolis, IN.  Not sure where you are located, but if Indy is closer to you than Boston, I wouldn't hesitate to recommend Dr. Smith.

I have also heard a lot of positive things about Dr. Smith. I personally had my surgery with Dr. Terry Horner(a neurosurgeon at Methodist Hospital in Indy) but he has retired which has sadly left the state with only two capable surgeons. However, Dr. Payner(spelling?) is also excellent. He has performed the surgery just as much as Dr. Horner(I don't have a number of times he has performed the surgery-but my parents felt confident in his experience) & Dr. Payner has taken well care of me in post op. It really just depends on which surgery you or a family member needs.  I think you should consider Indy. There has been a lot of success & it would be a lot easier for you & your family to travel to IN then CA or MA. If you do decide Indy & want a home cooked meal brought to you-let me know! I currently live in Indy & go to school at IUPUI(Riley's is on my campus & Methodist is just a shuttle away).