Hello,

My 42 year old husband suffered multiple ischemic stroke and was diagnosed with moyamoya in 12/02.  He suffered 100% occlusion to the interior carotid and subsequently underwent an STA to MCA bypass and burr holes at UCLA.  A review of his films by UCLA neurologists, neurosurgeons, and neuro-radiologists have determined that, at this point,  the vascular disease is unilateral only which is not typical of moyamoya disease.  Also, in his case, he does not have the tell-tale "puff of smoke" appearance of abnormal vessel growth.  All the moyamoya experts seem to agree that he may not have moya moya, however, it's a tricky disease and, in the absence of another reason for his vascular disease, it hasn't been ruled out.  He is doing extremely well since his surgery and, although he has some minor deficits from the stroke, has had no further symptoms or problems.  Does anyone out there have a similar story?   We are told it is extremely important for him to be monitored to determine whether there is any progression. (at this point, every 6-9 months he needs an MRI, a CT Angiogram, and a Perfusion Study)  For anyone out there who has this disease, I would consider a second opinion if you're not getting periodic testing.  

Thanks,

Jane