My 16-year-old was diagnosed last month.  We have seen a local neurosurgeon once and left unimpressed.  He has never cared for a patient with moyamoya and is shying away from surgery.  He talked like it wouldn't be necessary because there are some blood vessels pulling forward from the rear part of his brain.  We haven't heard his final recommendation because he won't be meeting with his team until the first Friday in March to discuss it. 

I have been working to get his records and a copy of his angiogram.  I was able to pick the rest of it up yesterday and was getting the information to fax the papers and overnight the disc.  I was unsure of an address so I called and was told that Dr. Steinberg sees adults only.  Is this true?  If so, would you recommend I still send him the information?  I am looking for both a second opinion in case the local surgeon officially says no to surgery and a doctor to handle the surgery.  I chose Dr. Steinberg because he is the one in the country with the most experience and I thought that would make it an easier fight with the insurance company if they should decide to fight the claims because of what the local guy says.  I am also impressed with the program at Stanford and Dr. Steinberg himself.

Any words of wisdom?

I'm not aware of any recent changes to his policy but Dr. Steinberg operated on my daughter when she was 9.  In fact, there was another boy aged 9 with MM who had surgery that same day.  Dr. Steinberg was a Godsend to us and his staff was amazing.  I don't think there is anyone else with more experience with kids than Dr. Steinberg. 

It amazes me, based on postings on this board, that local Neurologists and Neurosurgeons too often fail, IMHO, to provide proper guidance/recommendations and I can't help suspecting that few conduct the proper research prior to giving guidance.  We were very luck.  Dr. Keating at the National Children's Hospital in DC, a well reputed Neurosurgeon who have operated on MM patients in special case adults, working in one of the best children's hospital recommended to us, 'if it was my child, I would send her to Dr. Steinberg.' Thank God for Doctors like Keating and Steinberg. 

Best of luck

Thank you for your replies.  I have emailed Theresa (sp?) for instruction on sending the information and learned that she is on vacation at this point.  I will send it when I hear from her.

Hi Lynn,
You needn't wait until Theresa returns from vacation.There will be someone available at the Moyamoya Clinic in Stanford who can tell you how to send in your child's scans and such.
Stanford Moyamoya Clinic
Phone: (650) 723-5575
Fax: (650) 723-1948
Kim

Lynn, my daughter was diagnosed when she was 9 and had her surgeries at Stanford with Dr. Steinberg 3 wks after diagnosis.  He and his team are wonderful and we love them. 

We are in the processing of doing follow up tests with them as well.  I am happy to help you in any way I can.

Hillary