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

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  • Rena
    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.
    Message 1 of 4 , Apr 10, 2006
      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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    • chbrigger
      I would definitely get second opinion. I know Dr. Scott in Boston will look at her films and give you his advice. He is a wonderful caring Doctor and an
      Message 2 of 4 , Apr 10, 2006
        I would definitely get second opinion. I know Dr. Scott in Boston
        will look at her films and give you his advice. He is a wonderful
        caring Doctor and an expert in Moyamoya. If you are on the west coast
        you may want to try Dr. Steinberg at Stanford. Another good website
        for information is moyamoya.com. Good luck.
        Heather (mom to Erik 10 and Katie 9, both with moyamoya)

        --- In parentingchildrenwithmoyamoya@yahoogroups.com, "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.
        >
      • Jennifer Elrod
        Thank you.I never understood how she could not be at risk for another stroke when the disease is progressive.The neurosurgeon is supposed to let me know
        Message 3 of 4 , Apr 11, 2006
          Thank you.I never understood how she could not be at risk for another stroke when the disease is progressive.The neurosurgeon is supposed to let me know tomorrow if he will do the surgery.If he decides not to,I will definitely get another opinion.

          Rena <oneofakindco@...> wrote: 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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