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4 year old daughter w/ NF1 & Moya Moya

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  • jnokes5
    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
    Message 1 of 4 , Apr 9 9:42 PM
      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.
    • 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 2 of 4 , Apr 10 7:13 AM
        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 3 of 4 , Apr 10 8:52 AM
          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 4 of 4 , Apr 11 9:52 PM
            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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