Our 12 yr old son  was having a MRI and MRA for his Neurofibromatosis on Wednesday. His Neurologist immediately informed us following the tests that he has the rare condition Moyamoya.  She is at National Children's Medical center and is gathering the "experts" together MOnday night to review his tests.  Does anyone have any experience with the Dr's in DC who specialise with Moyamoya?  We are from Australia and not very familiar with your health system but are fully insured.  Would love to hear from anyone? I have found this Internet Support Page extremely informative  but we just feel "on edge" since the diagnosis.  He has never had any strokes or TIA's, so we were really shocked with the news.  :o

Hi Jane - I understand that you asked for a recommendation over a year ago; I apologize that I am new to reading these boards.  I am being treated at Johns Hopkins in Baltimore by Neurosurgeon Dr. Judy Huang; my first surgery will be on June 19 of this year.  The staff is very professional and courteous, and Dr. Huang and her medical office coordinator, Ms. Cooper, have gone out of their way to make us feel more than welcome.  If your son has not had his surgery, or is in need of a second surgery, please respond to this and I can e-mail you personally the specific contact information for the Neurosurgery Department... right to their "front door."  My prayers and thoughts go out to you at this difficult time.  TT