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481Re: [Parenting Children with Moyamoya] I need more info

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  • mdkempes@aol.com
    Jul 10, 2004
      I don't know if I can help but would like to try. Last summer when my
      daughter was 7, she had a routine MRI performed.

      (Both of my daughters have routine MRI's every 3 - 5 years because they have
      Neurofibromatosis which is a neurological disorder which can lead to tomors in
      the brain, along with other locations on the skin. They are almost never
      malignant.)

      After the MRI was performed, I received a call from the doctors letting me
      know that they discovered narrowing of the Right Middle Cerebral Artery. They
      scheduled an Angiogram/Arteriogram and found that it was virtually 100%
      occluded. The collateral vessel development in the area did NOT appear like a puff
      of smoke, like Moya Moya syndrome normally does.

      Some doctors wanted to be aggressive about treating the problem and others
      wanted to take a "wait and see" attitude since she had not had a stroke. As you
      can imagine, waiting for your child to have a stoke is not even in the realm
      of reality and the gall of any doctor to suggest it still appals me. They
      doctos did not want to call it "Moya Moya syndrome". I researched the internet
      for weeks and finally contacted Dr. Scott. I sent my daughters MRI /MRA and
      Angiogram films to him in Boston and within a week, received a call letting me
      know that they wanted to schedule surgery. Dr. Scott felt it was just a matter
      of time before a stroke occurred.

      The surgery was performed and my daughter is doing fantastic. The new
      vessels are developing beautifully and we are planning to go back to Boston in
      Oct/Nov for her 1 year follow-up, but the MRI in May (6 months post surgery) look
      great. This summer my daughter is on swim team, doing gymnastics,
      cheerleading, Girl Scout camp, etc....
      You would never know that 12 months ago we were on pins and needles for her
      life.

      Dr. Scott finally described the diagnosis as a "variant" of Moya Moya
      syndrome, and a fellow working with Dr. Scott said "If it acts like a duck and quacks
      like a duck, for all intent and purpose, we treat it like a duck".

      Have faith, there are alot of knowledgeable doctors out there but personally,
      I think the world of Dr. Scott and trust his word regardless.

      Take Care and good luck....Julia




      n a message dated 7/10/2004 4:38:31 PM Eastern Standard Time,
      jcamp9193@... writes:
      My 10 year old son does not have a definate diagnosis of moyamoya
      but they are trying to decide if he has moyamoya or inernal carotid
      artery stenosis.He has had 2 mri/mra's and a arteriogram.both
      mri/mra's stated begining stages of moyamoya, the arteriogram was
      inconclusive.We have an apointment in a couple weeks to talk to the
      Dr.and hopefully I can get my questions answered then but if there
      is anyone out there who was diagnosed before a stroke I would
      greatly apreciate any info on what led to a definate diagnosis.Right
      now I feel like I am just waiting for something to happen to him and
      am feeling very helpless and am trying to educate myself about both
      moyamoya an internal carotid artery stenosis.I'd apreciate any info
      or experiance anyone has had thanks


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