706Re: [Parenting Children with Moyamoya] 4 year old daughter w/ NF1 & Moya Moya
- Apr 10, 2006Get a second opinion. If she already had one stroke she is at risk of
more. Check out www.moyamoya.com to find a doctor in your area that
knows about Moyamoya.
--- jnokes5 <jnokes5@...> wrote:
> My 4 year old daughter was recently diagnosed with Moya Moya after__________________________________________________
> suffering a TIA.Her surgeon told us that she may not have to have
> surgery & has done a CT Perfusion test to see if she is at risk for
> having another stroke.He said that if she's not at risk for having a
> stroke anytime soon,then he will not do the surgery.This worries me
> because everything I have read states that the disease is progressive
> & that surgery is the only known treatment other than medicine used
> treat symptoms.Does anyone know of any cases where the patient has
> had to undergo surgery?I appreciate any info that anyone might
> have.Thank you all very much.
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