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Re: [Parenting Children with Moyamoya] New Diagnosis - Need Information

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  • Michelle Fredieu
    Hi. My daughter Cally has Moya-moya and had surgery almost three years ago. She started having problems when she was four but didn t get diagnosed until she
    Message 1 of 9 , Dec 29, 2003
      Hi. My daughter Cally has Moya-moya and had surgery almost three years ago. She started having problems when she was four but didn't get diagnosed until she was 10.
      We were sent to Texas Children's Hospital in Houston where Dr. Robert Dauser performed her surgeries. He replaced her arteries with scalp arteries but he also discovered a new procedure by cutting a square piece of brain dura and laying it directly on the brain. This procedure has been very effective. I would recommend Dr. Dauser most definitely. Cally is thirteen now and has had no problems or side effects since her surgery. If you have any questions or just need to talk please feel free to e-mail me anytime. Sincerely, Michelle Fredieu

      marlew47 <marcia.danzeisen@...> wrote:
      My 14-month old daughter, Chloe, had a stroke within the last 7 days
      and the neurologist found evidence of a small prior stroke on the
      MRI. They suspect moyamoya. He suggests we go to a specialist for the
      advanced testing and ultimate diagnosis and he recommends a doctor at
      JohnHopkins, but it seems that the majority of references on this
      site are to a Dr. Scott in Boston. We live in Florida, but will
      travel anywhere for the best treatment. He put her on lovinox for
      three weeks, then will go to aspirin for short term therapy to
      prevent further strokesn until diagnosis and treatment. What is the
      surgery everyone refers to on this site? We are scared and
      devastated. She was paralyzed on the left side, which alerted us, but
      is regaining movement every day.



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    • marlew47
      What is the url for the web site. I can t find it. In parentingchildrenwithmoyamoya@yahoogroups.com,
      Message 2 of 9 , Dec 30, 2003
        What is the url for the web site. I can't find it.




        In parentingchildrenwithmoyamoya@yahoogroups.com, <dareinhart@y...>
        wrote:
        > Dr. Scott is the foremost authority on moyamoya in the
        > US. There are other doctors who have successfully
        > treated moyamoya patients, but if you're willing to
        > travel, I would at least seek Dr. Scott's opinion. If
        > you go to the Boston Neurological Society's web site,
        > Dr. Scott has prepared FAQs on moyamoya and moyamoya
        > surgery.
        >
        > In order to diagnose your daughter, she will have to
        > have an MRA and/or an angiogram. Dr. Scott requires
        > an angiogram prior to surgery so that he has a full
        > picture of all the blood vessels.
        >
        > Why don't you call him, he is very receptive. The
        > phone number is 617-355-6011.
        >
        > Good luck.
        >
        > Denyse
        >
        > --- marlew47 <marcia.danzeisen@c...> wrote:
        > > My 14-month old daughter, Chloe, had a stroke within
        > > the last 7 days
        > > and the neurologist found evidence of a small prior
        > > stroke on the
        > > MRI. They suspect moyamoya. He suggests we go to a
        > > specialist for the
        > > advanced testing and ultimate diagnosis and he
        > > recommends a doctor at
        > > JohnHopkins, but it seems that the majority of
        > > references on this
        > > site are to a Dr. Scott in Boston. We live in
        > > Florida, but will
        > > travel anywhere for the best treatment. He put her
        > > on lovinox for
        > > three weeks, then will go to aspirin for short term
        > > therapy to
        > > prevent further strokesn until diagnosis and
        > > treatment. What is the
        > > surgery everyone refers to on this site? We are
        > > scared and
        > > devastated. She was paralyzed on the left side,
        > > which alerted us, but
        > > is regaining movement every day.
        > >
        > >
        >
        >
        > __________________________________
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      • mdkempes@aol.com
        This is the link to the website. http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml I also found it extremely informative.....Goodluck.
        Message 3 of 9 , Dec 30, 2003
          This is the link to the website.

          http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml

          I also found it extremely informative.....Goodluck.


          [Non-text portions of this message have been removed]
        • LONNIE NORMAN
          hello I am from Florida and we see a doctor at The University of Gainesville We started seeing DR. Mickle he left and now we are seeing Dr. Pincus I do not
          Message 4 of 9 , Jan 1, 2004
            hello I am from Florida and we see a doctor at The University of Gainesville We started seeing DR. Mickle he left and now we are seeing Dr. Pincus I do not know where in Florida you are but you may want to check out this location just to see so that you may not have to travel to far. The other doctor we see is Dr. Carney My daughter is now 6yrs. old, she was diagnosed when she was 11 mths old with MOYA MOYA so I can give you more information if needed
            Sandy

            marlew47 <marcia.danzeisen@...> wrote:
            My 14-month old daughter, Chloe, had a stroke within the last 7 days
            and the neurologist found evidence of a small prior stroke on the
            MRI. They suspect moyamoya. He suggests we go to a specialist for the
            advanced testing and ultimate diagnosis and he recommends a doctor at
            JohnHopkins, but it seems that the majority of references on this
            site are to a Dr. Scott in Boston. We live in Florida, but will
            travel anywhere for the best treatment. He put her on lovinox for
            three weeks, then will go to aspirin for short term therapy to
            prevent further strokesn until diagnosis and treatment. What is the
            surgery everyone refers to on this site? We are scared and
            devastated. She was paralyzed on the left side, which alerted us, but
            is regaining movement every day.



            ---------------------------------
            Yahoo! Groups Links

            To visit your group on the web, go to:
            http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

            To unsubscribe from this group, send an email to:
            parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



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