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  • jcamp9193
    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
    Message 1 of 8 , Jul 10, 2004
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      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
    • 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 2 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 3 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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          http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

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          parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

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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 4 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 5 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 6 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 7 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 8 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

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