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8 Year old daughter with NF1 and Occluded artery, possible Moya Moya

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  • mdkempes
    Dear All, My daughter has Neurofibromatosis Type 1 and during a routine MRI, a constricted artery was found. Subsequent MRA and Angiogram confirmed 100%
    Message 1 of 3 , Sep 7, 2003
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      Dear All,

      My daughter has Neurofibromatosis Type 1 and during a routine MRI, a
      constricted artery was found. Subsequent MRA and Angiogram confirmed
      100% occlusion. Threadlike collateral vessels exist that appear Moya
      Moya like but the head of Neurosurgery is not convinced and suggests
      that since she has not stroked yet, that we watch and wait. The dept
      heads are all meeting to discuss the situation and what
      recommendations to make. We finally have an appt with a Neurosurgeon
      and I am anxious to hear what she has to say. I have spent the last
      3 weeks scanning the net for everything I can find on NIH's website,
      Thedoctorsdoctor.com, Harvard medical etc. Everything I see points to
      surgery being the solution. It also stresses that the less
      neurological damage beforehand, the better the prognosis. I have
      emailed Dr. Scott at Boston Children's and asked him to review her
      scans and give us his opinion. I won't sit back and wait for my
      daughter to stroke. I feel blessed that this was found during a
      routine MRI which is done on NF1 Kids every 3-5 years.

      Does anyone else out there have a child with Moya Moya and NF1?
      Can anyone tell me anything about typical hospitalization time?
      Recovery at home time? etc, if there are no complications. I have
      learned an awful lot from reading the many many messages. I hope no
      one ever just sits back and listens to 1 persons opinion without
      researching all they can. The web is an amazing tool.

      Good luck to all of you Moya Moya parents and children. Your insight
      is invaluable.

      Thanks, Julia
    • chbrigger
      Dear Julia I think I remember hearing somewhere of an associaiton with Neurofibromatosis and moyamoya, Dr. Scott could give you the answer to that question. I
      Message 2 of 3 , Sep 8, 2003
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        Dear Julia

        I think I remember hearing somewhere of an associaiton with
        Neurofibromatosis and moyamoya, Dr. Scott could give you the answer
        to that question. I definitely agree with getting second opinions
        and not waiting for a stroke. It seems like a blessing to have this
        found in the MRI scan. My children were in the hospital for 4 days
        after surgery, they were up and walking the second day. It was
        amazing how quickly they recover. Also after surgery it takes awhile
        for the new collateral vessels to grow. My daughter was younger and
        had three serious strokes before surgery so the recovery from that
        was longer, my son had just had a TIA and he was back at school three
        weeks after surgery. If you have any more questions feel free to ask
        and good luck, we will keep you in our thoughts.
        Heather
      • dareinhart@yahoo.com
        Julia, I think it s great that you contacted Dr. Scott. I believe he is the foremost authority on moyamoya in the US. It took us 9 months to get a diagnosis
        Message 3 of 3 , Sep 8, 2003
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          Julia, I think it's great that you contacted Dr.
          Scott. I believe he is the foremost authority on
          moyamoya in the US. It took us 9 months to get a
          diagnosis for my daughter, and all the while she was
          having multiple TIAs each day. If she had been
          diagnosed following her first TIAs we might have
          stopped her from having several small strokes that
          have slightly affected her cognitive abilities.

          When my daughter was diagnosed, I was told that NF was
          one of the diseases associated with moyamoya. I'm so
          sorry that your daughter has to deal with both of
          these diseases.

          Denyse

          --- mdkempes <mdkempes@...> wrote:
          > Dear All,
          >
          > My daughter has Neurofibromatosis Type 1 and during
          > a routine MRI, a
          > constricted artery was found. Subsequent MRA and
          > Angiogram confirmed
          > 100% occlusion. Threadlike collateral vessels exist
          > that appear Moya
          > Moya like but the head of Neurosurgery is not
          > convinced and suggests
          > that since she has not stroked yet, that we watch
          > and wait. The dept
          > heads are all meeting to discuss the situation and
          > what
          > recommendations to make. We finally have an appt
          > with a Neurosurgeon
          > and I am anxious to hear what she has to say. I
          > have spent the last
          > 3 weeks scanning the net for everything I can find
          > on NIH's website,
          > Thedoctorsdoctor.com, Harvard medical etc.
          > Everything I see points to
          > surgery being the solution. It also stresses that
          > the less
          > neurological damage beforehand, the better the
          > prognosis. I have
          > emailed Dr. Scott at Boston Children's and asked him
          > to review her
          > scans and give us his opinion. I won't sit back and
          > wait for my
          > daughter to stroke. I feel blessed that this was
          > found during a
          > routine MRI which is done on NF1 Kids every 3-5
          > years.
          >
          > Does anyone else out there have a child with Moya
          > Moya and NF1?
          > Can anyone tell me anything about typical
          > hospitalization time?
          > Recovery at home time? etc, if there are no
          > complications. I have
          > learned an awful lot from reading the many many
          > messages. I hope no
          > one ever just sits back and listens to 1 persons
          > opinion without
          > researching all they can. The web is an amazing
          > tool.
          >
          > Good luck to all of you Moya Moya parents and
          > children. Your insight
          > is invaluable.
          >
          > Thanks, Julia
          >
          >


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