It is now time to choose a surgeon.  My husband has an aunt in another state who knows many people in high places within that state.  She has learned that the hospital there, that is very famous for it's neurology services, has only about four moyamoya cases a year. 

That has me wondering....

There is no surgeon in my area with moyamoya experience.  I have found one on the other side of the state but am unsure of how many cases he has had.  When I called to asked I was told that he has "several" moyamoya patients.  I pressed further and never got closer to a number than "several".

I am wondering how many cases I should be looking for?  How many surgeries would make YOU feel comfortable?  I expected the famous hospital to have more than four a year so now I am left wondering.....

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.

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.

She studied for two years as a fellow under Dr. Scott in Boston.  Because of this training, she had significantly more experience performing the surgery than the one pediatric neurosurgeon in my then-insurance network ("about 6 times" w/Dr. Young vs. over 100 times w/Dr. Smith).  For me the fact that Dr. Smith had studied with Dr. Scott for an extended period of time was probably more significant than the exact number of times she had performed the surgery, but like you, I was definitely not comfortable with a low, approximate number when selecting my daughter's surgeon.   :)

It would be impossible to say enough wonderful things about Dr. Smith - she's a skilled surgeon, has a wonderful bedside manner with kids, speaks in easy-to-understand language when talking w/parents, is very kind and very accessible - that's good for starters. 

Best,

Jenn

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.

Thank you for your replies.  I am in Michigan so we are checking into Dr. Smith.  I know that Stanford is the best but it is not really in our reach to travel that far.  We have an aunt in Baltimore so Johns Hopkins is interesting too.  Does anybody have an opinion on Johns Hopkins?

[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).