Posted by Lisa on March 17, 2003 at 02:22:50:
In Reply to: DJ posted by Shelby on March 16, 2003 at 21:24:02:
Hi Shelby,
From what I understand your son has already had one angiogram? I assume at the time he had the stroke in December? If so, I would suggest you get the copies of this and send to Dr. Steinberg at Stanford and see what he thinks. Dr. Steinberg will do this as a courtesy. Maybe your son doesn't have Moya Moya, as his doctor suggests, but if he does waiting around to see what happens in May is not a good thing. Frankly, I don't quite understand his doctor's confusion. From what I understand you either have the tell-tale "puff of smoke" or you don't. Then again, I am not a doctor but I do know that you could clearly see the Moya Moya signs on my angio.
May I ask at what doctor/hospital your son is currently receiving care?
Also, my story is very similar to DJ's but have only had surgery on one side. My left side was much worse than my right and I am currently awaiting results on how my right side is progressing (or not). As for your son's age, in many of the articles, it does say that it is common in children and then people in their 30's and 40's. I am 35.
Tell your son he is in my prayers and I hope he continues to improve every day!
Lisa