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Re: [Parenting Children with Moyamoya] (unknown)

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  • RGrace5@aol.com
    Nancy, My daughter had surgery just over a year ago in Boston.She was diagnosed at 4 yrs old.She had strokes on both sides about 4 days after the first side
    Message 1 of 14 , Jul 25, 2003
      Nancy, My daughter had surgery just over a year ago in Boston.She was
      diagnosed at 4 yrs old.She had strokes on both sides about 4 days after the first
      side was done. One of the strokes left her with no use of her left side. Her
      strokes were most likely because she was extremely unstable at the time of
      surgery.She had a stroke on the way to the hospital for her surgery.this is never a
      good situation for surgery but we were at this point left with no other
      alternative.She was getting worse very quickly.She then had the second side done
      about one week after the first. She is doing quite well considering what she has
      been through. She is almost walking and can now touch her nose with her left
      hand.We spent 4 weeks in a rehab hospital after her surgery.she has had no new
      strokes since the surgery!!!! Her follow up visit showed incredible new
      vascular growth. It also showed that the disease had gotten much worse.I truely
      believe if not for the surgery she would not be here today. How long ago was your
      daughters surgery and who did the surgery?Did she have many strokes before
      surgery?
      Mary


      [Non-text portions of this message have been removed]
    • LONNIE NORMAN
      My six year old daughter had her first surgery when she was 11 months old she had a stroke th very next day. It took her speech and her fine motor skills she
      Message 2 of 14 , Aug 1, 2003
        My six year old daughter had her first surgery when she was 11 months old she had a stroke th very next day. It took her speech and her fine motor skills she had to learn things all over again she was doing real good and when she was 4 years they did the other side of the brain and she had a stroke the next day. the doctors said she would never talk again because it took her able to talk, eat, and swallow however it has been a very hard road but she is talking agian she can eat food she still has problems swallowing sometimes but all in all she is doing good.. We just saw the neurogist twq weeks ago and he said he never expected to see Samantha doing as good as she is but that there is nothing more they can do for her.
        Sandy








        My daughter has just had both side operated on. I have read that the
        risk of stroke from the surgery is 4-6 weeks after the surgery. Do any
        of you have any experience of this? Did any of your children have a
        stroke after the surgery and what was the reason?

        Thanks

        Nancy



        -----Original Message-----
        From: mandy harmon [mailto:HarmonMandy@...]
        Sent: 25 July 2003 03:28
        To: parentingchildrenwithmoyamoya@yahoogroups.com
        Subject: Re: [Parenting Children with Moyamoya] (unknown)




        My daughter has williams and moya moya syndrome. When she was first
        diagnoised with moya moya we were told she would live to 9-10 years and
        surgery was not possible only blood thinner. We found another Dr and
        (Scott) She had 2 surgeries and is now 10 1/2. She is having alot of
        trouble but it is possible it is from some of her other problems.
        Several
        Drs mention a short life span with her combination of issues but others
        disagree. I say it is best left to God!! I quit guesing ehr life span-
        it
        doesnt add any time.

        I hope your daughter does well. If I can help- I would love to. mandy

        >From: LONNIE NORMAN <lnorman88@...>
        >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
        >To: parentingchildrenwithmoyamoya@yahoogroups.com
        >Subject: [Parenting Children with Moyamoya] (unknown)
        >Date: Wed, 23 Jul 2003 17:57:02 -0700 (PDT)
        >
        >Hello,
        > I have a six year old daughter who was diagnosed with moya moya
        when
        >she was 11months old they did the EDA surgery on her and she had a
        massive
        >stroke. which she slowly recovered from then when she was 3 years old
        they
        >did the other side of the brain. She had another massive stroke and
        the
        >doctors say she would never speak again however they were wrong she can

        >talk but not like a normal 6 year old. Now there is nothing the
        doctors
        >say they can do. We are wanting to know if someone has more
        information on
        >this disease and can give us some light into the subject.. Thursday
        our
        >neurologist told us the lifespan for a small child is usually only up
        to
        >10years. Does anyone know different. Is there any hope out there for
        our
        >Samantha?
        >
        >
        >---------------------------------
        >Do you Yahoo!?
        >Yahoo! SiteBuilder - Free, easy-to-use web site design software
        >
        >[Non-text portions of this message have been removed]
        >

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      • LONNIE NORMAN
        I have never heard of williams diease but just knowing someone else out there can relate to our situation makes me feel better. I am sorry to hear she is not
        Message 3 of 14 , Aug 1, 2003
          I have never heard of williams diease but just knowing someone else out there can relate to our situation makes me feel better. I am sorry to hear she is not doing well. I also am glad to hear that life span doesnot count. We are checking into other Drs just to see what they say about the diease. thank you for the input and you are right it is in GODS hands
          Sandy








          mandy harmon <HarmonMandy@...> wrote:
          My daughter has williams and moya moya syndrome. When she was first
          diagnoised with moya moya we were told she would live to 9-10 years and
          surgery was not possible only blood thinner. We found another Dr and
          (Scott) She had 2 surgeries and is now 10 1/2. She is having alot of
          trouble but it is possible it is from some of her other problems. Several
          Drs mention a short life span with her combination of issues but others
          disagree. I say it is best left to God!! I quit guesing ehr life span- it
          doesnt add any time.

          I hope your daughter does well. If I can help- I would love to. mandy

          >From: LONNIE NORMAN <lnorman88@...>
          >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
          >To: parentingchildrenwithmoyamoya@yahoogroups.com
          >Subject: [Parenting Children with Moyamoya] (unknown)
          >Date: Wed, 23 Jul 2003 17:57:02 -0700 (PDT)
          >
          >Hello,
          > I have a six year old daughter who was diagnosed with moya moya when
          >she was 11months old they did the EDA surgery on her and she had a massive
          >stroke. which she slowly recovered from then when she was 3 years old they
          >did the other side of the brain. She had another massive stroke and the
          >doctors say she would never speak again however they were wrong she can
          >talk but not like a normal 6 year old. Now there is nothing the doctors
          >say they can do. We are wanting to know if someone has more information on
          >this disease and can give us some light into the subject.. Thursday our
          >neurologist told us the lifespan for a small child is usually only up to
          >10years. Does anyone know different. Is there any hope out there for our
          >Samantha?
          >
          >
          >---------------------------------
          >Do you Yahoo!?
          >Yahoo! SiteBuilder - Free, easy-to-use web site design software
          >
          >[Non-text portions of this message have been removed]
          >

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        • LONNIE NORMAN
          USA, Florida to be exact the first surgery Dr. Mickle the second Dr. Pinus how trained under Dr, Scott the next day of Both and yes I would love to have there
          Message 4 of 14 , Aug 1, 2003
            USA, Florida to be exact
            the first surgery Dr. Mickle the second Dr. Pinus how trained under Dr, Scott
            the next day of Both and yes I would love to have there email to just see what they say thank you,
            Sandy






            Nancy McStravick <nancymcstravick@...> wrote:Hi Lonnie,

            I am so sorry to hear about your little girl. I can't imagine how you
            got through that.

            My little girl (22months) just had both sides operated on within the one
            week at Great Ormond Street Hospital in the UK

            Thankfully she hasn't had a stroke since. Her first stroke was in March.



            I would strongly recommend that you get on the various internet sites
            and read about Moyamoya. I think you will find that it is quite positive
            regarding the operations for Moyamoya. I have never heard of a life span
            of 10 years and in fact it is most common age to get Moyamoya is either
            7 year olds or when you are in your 30's/40's.

            As this is the case, the life span couldn't be 10 years!!



            Can you tell me:

            * Where you are from? i.e. USA, UK etc.
            * Who did your surgery?
            * How soon after surgery did your daughter have her strokes?



            If you are in the USA, you will find that there seems to be 2 experts,
            Dr. Scott in Boston and Dr. Steinberg in Stanford. I have both there
            e-mail address' if you need it.



            Moyamoya is a very serious condition but my personal opinion is if you
            have the surgery early enough then it should be ok. That's what we are
            hoping anyway

            Please do reply with the answers to my questions and good luck

            Nancy

            -----Original Message-----
            From: LONNIE NORMAN [mailto:lnorman88@...]
            Sent: 24 July 2003 01:57
            To: parentingchildrenwithmoyamoya@yahoogroups.com
            Subject: [Parenting Children with Moyamoya] (unknown)



            Hello,
            I have a six year old daughter who was diagnosed with moya moya when
            she was 11months old they did the EDA surgery on her and she had a
            massive stroke. which she slowly recovered from then when she was 3
            years old they did the other side of the brain. She had another massive
            stroke and the doctors say she would never speak again however they were
            wrong she can talk but not like a normal 6 year old. Now there is
            nothing the doctors say they can do. We are wanting to know if someone
            has more information on this disease and can give us some light into the
            subject.. Thursday our neurologist told us the lifespan for a small
            child is usually only up to 10years. Does anyone know different. Is
            there any hope out there for our Samantha?


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          • LONNIE NORMAN
            no just moya moya we are checking into other doctors. How young was your daughter when diagonsed dareinhart@yahoo.com wrote:Lonnie, I am so sorry to hear
            Message 5 of 14 , Aug 1, 2003
              no just moya moya we are checking into other doctors. How young was your daughter when diagonsed





              dareinhart@... wrote:Lonnie, I am so sorry to hear about the difficulties
              you and your daughter have faced. I would strongly
              urge you to seek another opinion on your daughter.
              Does she have another disease/syndrome besides
              moyamoya? I have never heard of a 10 year life span.
              In fact, I was told that moyamoya is not usually
              fatal. My daughter is 11, she had surgery at 6.

              In terms of progress from the strokes, children's
              brains continue to rewire until at least the age of
              14, maybe longer in some cases. Is your daughter
              receiving therapies? While the stroke damage cannot be
              repaired, I would think your daughter would still
              benefit from therapies, especially if she's already
              done something -- i.e. talk -- that the doctors said
              she would never do.

              Keep fighting. Denyse

              --- LONNIE NORMAN <lnorman88@...> wrote:
              > Hello,
              > I have a six year old daughter who was diagnosed
              > with moya moya when she was 11months old they did
              > the EDA surgery on her and she had a massive stroke.
              > which she slowly recovered from then when she was 3
              > years old they did the other side of the brain. She
              > had another massive stroke and the doctors say she
              > would never speak again however they were wrong she
              > can talk but not like a normal 6 year old. Now
              > there is nothing the doctors say they can do. We
              > are wanting to know if someone has more information
              > on this disease and can give us some light into the
              > subject.. Thursday our neurologist told us the
              > lifespan for a small child is usually only up to
              > 10years. Does anyone know different. Is there any
              > hope out there for our Samantha?
              >
              >
              > ---------------------------------
              > Do you Yahoo!?
              > Yahoo! SiteBuilder - Free, easy-to-use web site
              > design software
              >
              > [Non-text portions of this message have been
              > removed]
              >
              >


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            • ilovemybulldog@aol.com
              How wonderful!!! Great news..:) Sara mother to Keith direct bypass on left and right side March 15th and 23 of 2006 [Non-text portions of this message have
              Message 6 of 14 , Jan 29, 2007
                How wonderful!!! Great news..:)

                Sara
                mother to Keith direct bypass on left and right side March 15th and 23 of
                2006


                [Non-text portions of this message have been removed]
              • Laurie Park
                Hi All, After complaining about yet another message from the singles group, my husband pointed out the nifty little button at the bottom of this page labeled
                Message 7 of 14 , Feb 4, 2007
                  Hi All,
                  After complaining about yet another message from the singles group, my husband pointed out the nifty little button at the bottom of this page labeled "Spam". Go ahead and click on it to avoid receiving any more unwanted messages.

                  Hope this works!
                  Laurie


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                • jane wood
                  Hi Laurie This will probably stop you from recieving all mail from the site though ??? I think ??? Jane x Laurie Park wrote: Hi All,
                  Message 8 of 14 , Feb 6, 2007
                    Hi Laurie
                    This will probably stop you from recieving all mail from the site though ???
                    I think ???
                    Jane x

                    Laurie Park <sparkln13@...> wrote:
                    Hi All,
                    After complaining about yet another message from the singles group, my husband pointed out the nifty little button at the bottom of this page labeled "Spam". Go ahead and click on it to avoid receiving any more unwanted messages.

                    Hope this works!
                    Laurie

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






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                  • Elizabeth Mangus
                    No, it does not stop messages from the group, just from where the spam originates from. Very useful.... Elizabeth M Daughter of Madeline jane wood
                    Message 9 of 14 , Feb 6, 2007
                      No, it does not stop messages from the group, just from where the spam originates from. Very useful....

                      Elizabeth M
                      Daughter of Madeline

                      jane wood <ginger090177@...> wrote:
                      Hi Laurie
                      This will probably stop you from recieving all mail from the site though ???
                      I think ???
                      Jane x

                      Laurie Park <sparkln13@...> wrote:
                      Hi All,
                      After complaining about yet another message from the singles group, my husband pointed out the nifty little button at the bottom of this page labeled "Spam". Go ahead and click on it to avoid receiving any more unwanted messages.

                      Hope this works!
                      Laurie

                      ---------------------------------
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                      with theYahoo! Search movie showtime shortcut.

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

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