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7054 year old daughter w/ NF1 & Moya Moya

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  • jnokes5
    Apr 9, 2006
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      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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