[tri-med] Re: Marking on brain

>Kye (t14m) had a  mri done on Tuesday and received the 
>results back today and it showed he had a black cloud 
>marking over his brain and we have been sent off to the 
>neuro surgeon a.s.a.p.  Has any one had this with any of
>there trisomy kids.  

Sounds kind of like Moya Moya Syndrome?  Moya Moya is 
Japanese, and literally translated means "puff of smoke".
If that's what it is, then that dark "puff of smoke" area
in the brain is made up of lots of little custom made
capillaries to help oxygenate his brain.  Philina has 
this, or she wouldn't have lived to be born.  Sometimes,
in non trisomy individuals, it's just the result of narrowing
(or stenosis) of the carotid arteries, and can then be 
surgically "fixed" by grafting good pieces of artery in the
neck.  But in Philina's case that wouldn't help, because she's
also totally missing the vessel that should transport the blood
through the center of her brain.  So IF they increased the flow
in her carotids, it possibly would only serve to overload her
custom capillary system, so we leave well enough alone.  In fact
the only problem she's had with this set up, is that sometimes
after a surgical procedure she will throw a little blood clot 
that gets caught in one of those capillaries and causes a transient 
ischemic attack (TIA).  And that is like a temporary mini stroke.  
Scary at the time, especially if you don't have a clue what caused
it and that's it's going to be temporary!  So when that happened (4x's
before we had a diagnosis) this girl can be totally paralyzed on one 
side or the other, depending on which side the clot is on, but within 
hours (once months, but Phenobarbital was complicating that one) be 
totally normal again.

Fawna, Research coordinator TRIS Project, mom 
to Thom & Rhonda, Lara, & Philina 25yrs (PT6p 
& Moya Moya Syndrome), Escondido, CA USA
http://home.mindspring.com/~fawna33/
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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