Hello MoyaMom:
I wanted to say that I dealt with neuro;s in bham at UAB and they were good but am now seeing neuros at Mayo clinic in jaksonille, fl.... in 07 i was seen by a neuro in bha who said i had neurovasculitis and gave me lots of meds... they helped but only for a bit. last year everything came back with a vengance and my neuro here in dothan suspected moyamoya and sent me to Mayo.... that goodness he did b/c now i am being seen by a group there who sepcialize in MMD and are hopefully going to get this taken care of as best as they can.. i would suggest a 2nd and 3rd opinion for your son dear......
MoyaMom wrote on Nov 18th, 2005 at 5:27pm:Jill, Michelle and Kevin,
My son is 28 and had a stroke on July 23rd of this year. He did not have any lasting symptoms. That started a barrage of tests which led to a neuro in Ft. Walton, FL. The surgeon, suspected MM, because he was stationed in Japan and saw it alot, but is not qualified, by his own admittance, to treat it. He sent us to UA Birmingham Medical Center where he saw a Neurosurgeon who did an angiogram and diagnosed MM. My son just went back this week for a special MRI that measures blood flow. His bloodflow is normal, and the veins his body has made to make up for the 100% blocked ones are very strong in the NS's opinion. So he is saying wait until symptoms get worse, even though he has never done an MM surgery. Needless to say we are seeking 2nd and 3rd opinions and fast!! We have DVD's of angiogram, CTA, and recent MRI. I read that Dr. Steinberg in LA will look at them at no charge and give a determination. Dr. Lewis at UFL Gainesville, FL will look at written reports of the tests at no charge. That is where we are at this point. Any tips, info or suggestions are greatly appreciated!! Sorry, Jill for the repeat, I sent this to you privately.
Marguerite
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