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

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  • mardanz@comcast.net
    In my first consult with a neurosurgeon after my 18-month-old had a stroke, he said just to take her home and hope for the best. I sent the films to Dr. Scott
    Message 1 of 2 , Apr 10, 2006
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      In my first consult with a neurosurgeon after my 18-month-old had a stroke, he said just to take her home and hope for the best. I sent the films to Dr. Scott and he said if she did not get to Boston for surgery within 30 days, she's be dead. Get in touch with Dr. Scott asap. My daughter is now a happy, healthy 3-yr-old with no problems.

      -------------- Original message --------------
      From: chbrigger <no_reply@yahoogroups.com>
      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.
      >







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    • vamcc@beld.net
      In case you don t have it, here is Dr. Scott s contact info. He si wonderful. Best of luck. R. Michael Scott Director - Pediatric Neurosurgery Children s
      Message 2 of 2 , Apr 10, 2006
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        In case you don't have it, here is Dr. Scott's contact info. He si wonderful.

        Best of luck.

        R. Michael Scott
        Director - Pediatric Neurosurgery
        Children's Hospital
        300 Longwood Ave
        Boston, MA 02115

        Ph: (617) 355-6011
        fax: (617) 734-2628
        e-mail: michael.scott@...
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