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706Re: [Parenting Children with Moyamoya] 4 year old daughter w/ NF1 & Moya Moya

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  • Rena
    Apr 10, 2006
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      Get 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
      > to
      > treat symptoms.Does anyone know of any cases where the patient has
      > not
      > had to undergo surgery?I appreciate any info that anyone might
      > have.Thank you all very much.

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