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

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  • Rena
    My son had a storke at 11-yrs-old that led to his diagnosis. However I had been told that an arteriogram was the way definate diagnosis was made. Check out
    Message 1 of 8 , Jul 10, 2004
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      My son had a storke at 11-yrs-old that led to his diagnosis. However I had been told that an arteriogram was the way definate diagnosis was made.
      Check out Moyamoya.com, they have a ton of information and support, maybe that will help you. I know some of them have been diagnosed before a stroke.

      jcamp9193 <jcamp9193@...> wrote:
      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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    • jane wood
      HI My daughter had 2 strokes when she was 1, and was later diagnosed with moya-moya by an Angiogram, which I thought was the only way of determing diagnosis.
      Message 2 of 8 , Jul 10, 2004
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        HI
        My daughter had 2 strokes when she was 1, and was later diagnosed with moya-moya by an Angiogram, which I thought was the only way of determing diagnosis.
        As Rena said, look on the website it a has lots of usefull information which was excellent help to myself.
        Take Care
        Good luck
        Jane

        Rena <oneofakindco@...> wrote:
        My son had a storke at 11-yrs-old that led to his diagnosis. However I had been told that an arteriogram was the way definate diagnosis was made.
        Check out Moyamoya.com, they have a ton of information and support, maybe that will help you. I know some of them have been diagnosed before a stroke.

        jcamp9193 <jcamp9193@...> wrote:
        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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      • mdkempes@aol.com
        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
        Message 3 of 8 , Jul 10, 2004
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          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


          [Non-text portions of this message have been removed]
        • mandy harmon
          My daughter also has Williams syndrome. A nurologist requested a mri to reule out another problem a few williams kids have. In the time of the mri being read
          Message 4 of 8 , Jul 10, 2004
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            My daughter also has Williams syndrome. A nurologist requested a mri to
            reule out another problem a few williams kids have. In the time of the mri
            being read and us being contacted she had her first TIA that we noticed.
            Because the mri showed problems they suspected moya moya then requested an
            arteriogram. The same sort of thing happened when the other side went bad-
            we suspected a problem the test confirmed it. I found that for us Hannah
            was his first moya moya case. He was reluctant to diagnosis it. Dr. Scott
            was fast to act and help Hannah.

            Mandy


            >From: Rena <oneofakindco@...>
            >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
            >To: parentingchildrenwithmoyamoya@yahoogroups.com
            >Subject: Re: [Parenting Children with Moyamoya] I need more info
            >Date: Sat, 10 Jul 2004 13:31:17 -0700 (PDT)
            >
            >My son had a storke at 11-yrs-old that led to his diagnosis. However I had
            >been told that an arteriogram was the way definate diagnosis was made.
            >Check out Moyamoya.com, they have a ton of information and support, maybe
            >that will help you. I know some of them have been diagnosed before a
            >stroke.
            >
            >jcamp9193 <jcamp9193@...> wrote:
            >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
            >
            >
            >Yahoo! Groups SponsorADVERTISEMENT
            >
            >
            >---------------------------------
            >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.
            >
            >
            >
            >---------------------------------
            >Do you Yahoo!?
            >Yahoo! Mail - 50x more storage than other providers!
            >
            >[Non-text portions of this message have been removed]
            >

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          • RGrace5@aol.com
            My daughter was diagnosed after a couple of small strokes.We imediatly got in contact with Dr. Scott.He made the final diagnosis after an arteriogram.Both
            Message 5 of 8 , Jul 11, 2004
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              My daughter was diagnosed after a couple of small strokes.We imediatly got
              in contact with Dr. Scott.He made the final diagnosis after an arteriogram.Both
              sides needed surgery.Unfortunatly she suffered more strokes.Four more,one
              just 2 weeks after ehr arteriogram,one the day we went to Boston for surgery and
              2 more between surgeries.She was left with no use of her left side.My reason
              for telling you our story is, Please don't wait.You can easily get in touch
              with Dr. Scott and he can look at your son't films and help with this
              diagnosis.This disease doesn't usually progress as quickly as it did for my daughter but
              it DOES always progress.Dr. Scott is wonderful and saved my daughter's
              life.She is doing wonderful now and learning everything all over again.Do you have
              his E-mail? Please keep us posted.
              Mary Grace


              [Non-text portions of this message have been removed]
            • dsrm5482
              My son was not dx d until after a stroke, but I have a question for you to ask the DR s.: what would they do differently if it is internal carotid arterial
              Message 6 of 8 , Aug 11, 2004
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                My son was not dx'd until after a stroke, but I have a question for
                you to ask the DR's.: what would they do differently if it
                is "internal carotid arterial stenosis (but isn't that what MM is?)
                and not MM? It seems to me that if there is a reduction in blood
                flow to the brain, you need to get it there! (ie, surgery). From
                what I've read in the past, surgery has been the best treatment for
                the symptoms of MM. Most patients do very well after surgery. Your
                note doesn't say what led you to get the MRI/MRa's; has he had TIA's
                or seizures?
                To answer your question about has anyone been dx'd b4 a stroke, I
                also reccommend the message board at Moyamoya.com as there are a few
                whose children were dx'd b4 stroke and received surgical
                intervention.
                Good luck to you and your son. another bit of advice I'd like to
                offer is to pray for guidance (& peace!). It sure worked for me!

                Sue



                --- In parentingchildrenwithmoyamoya@yahoogroups.com, "jcamp9193"
                <jcamp9193@y...> wrote:
                > 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
              • Ginny McCarthy
                My son [then age 5] was diagnosed before any stroke. He had what turned out to be a major TIA which led us to a neurologist and then Dr. Scott. The MRI/MRA
                Message 7 of 8 , Aug 11, 2004
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                  My son [then age 5] was diagnosed before any stroke. He had what turned out to be a major TIA which led us to a neurologist and then Dr. Scott.

                  The MRI/MRA confirmed the moya moya.

                  Hope that helps.

                  Ginny

                  [Non-text portions of this message have been removed]
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