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hi~my daughter was just diagnosed with moyamoya

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  • mislittlefoot
    my 9 yr old daughter was just diagnosed with moyamoya yesterday. they say she needs surgery within the next month, this has been very scary for us and we are
    Message 1 of 6 , Apr 20, 2004
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      my 9 yr old daughter was just diagnosed with moyamoya yesterday.
      they say she needs surgery within the next month, this has been very
      scary for us and we are looking for support from others that have
      gone through this. we live in california, in what they call
      the "central valley". we were going to valley childrens hospital in
      madera, but trying to get her case transferred to Stanford. does
      anyone have any suggestions or recommendations on anything?

      we are thankful that she has not had a stroke, but has the signs or
      the "tia's" that go along with it. they did the angiogram yesterday
      and told me it was much worse then what they thought it was, its
      affecting both sides of her brain, more so on the right side.

      can anyone help??
    • olive_turley
      Hi, My niece has Moyamoya but the gorup here are mainoy parents. they are mostly in the US, so will not be logged on for a while. They will give you all the
      Message 2 of 6 , Apr 21, 2004
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        Hi,
        My niece has Moyamoya but the gorup here are mainoy parents. they
        are mostly in the US, so will not be logged on for a while. They
        will give you all the detaisl you need.
        It does seem however that Dr. Steinberg and Dr. Scott are the two
        most experienced surgeons in the US. I beleive Dr. Steinberg is in
        Stanford, so maybe you should check that out.

        It's really good that your daughter has not had a stroke yet.


        --- In parentingchildrenwithmoyamoya@yahoogroups.com, "mislittlefoot"
        <mislittlefoot@y...> wrote:
        > my 9 yr old daughter was just diagnosed with moyamoya yesterday.
        > they say she needs surgery within the next month, this has been
        very
        > scary for us and we are looking for support from others that have
        > gone through this. we live in california, in what they call
        > the "central valley". we were going to valley childrens hospital
        in
        > madera, but trying to get her case transferred to Stanford. does
        > anyone have any suggestions or recommendations on anything?
        >
        > we are thankful that she has not had a stroke, but has the signs or
        > the "tia's" that go along with it. they did the angiogram
        yesterday
        > and told me it was much worse then what they thought it was, its
        > affecting both sides of her brain, more so on the right side.
        >
        > can anyone help??
      • Rena
        You are very lucky to get a diagnosis before a stroke. I am in CO and took my son to Stanford for surgey last June, he was 11 then. Make sure the doctors
        Message 3 of 6 , Apr 21, 2004
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          You are very lucky to get a diagnosis before a stroke. I am in CO and took my son to Stanford for surgey last June, he was 11 then. Make sure the doctors answer all the question you come up with, and let your daughter know that the surgey might seem scary, but she will heal fast from it. Feel free to email me, I will try to help all I can.
          My son had a stroke in Dec and we had to wait till June for the surgery, I know the fear you are dealing with.

          mislittlefoot <mislittlefoot@...> wrote:
          my 9 yr old daughter was just diagnosed with moyamoya yesterday.
          they say she needs surgery within the next month, this has been very
          scary for us and we are looking for support from others that have
          gone through this. we live in california, in what they call
          the "central valley". we were going to valley childrens hospital in
          madera, but trying to get her case transferred to Stanford. does
          anyone have any suggestions or recommendations on anything?

          we are thankful that she has not had a stroke, but has the signs or
          the "tia's" that go along with it. they did the angiogram yesterday
          and told me it was much worse then what they thought it was, its
          affecting both sides of her brain, more so on the right side.

          can anyone help??



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        • mislittlefoot
          thank you for the reply, i m curious to what doctor at stanford did the surgery on your son? how is he doing now? what type of surgery did he have, and how
          Message 4 of 6 , Apr 21, 2004
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            thank you for the reply, i'm curious to what doctor at stanford did
            the surgery on your son? how is he doing now? what type of surgery
            did he have, and how long was the recovery period for him?

            --- In parentingchildrenwithmoyamoya@yahoogroups.com, Rena
            <oneofakindco@y...> wrote:
            > You are very lucky to get a diagnosis before a stroke. I am in CO
            and took my son to Stanford for surgey last June, he was 11 then.
            Make sure the doctors answer all the question you come up with, and
            let your daughter know that the surgey might seem scary, but she
            will heal fast from it. Feel free to email me, I will try to help
            all I can.
            > My son had a stroke in Dec and we had to wait till June for the
            surgery, I know the fear you are dealing with.
            >
            > mislittlefoot <mislittlefoot@y...> wrote:
            > my 9 yr old daughter was just diagnosed with moyamoya yesterday.
            > they say she needs surgery within the next month, this has been
            very
            > scary for us and we are looking for support from others that have
            > gone through this. we live in california, in what they call
            > the "central valley". we were going to valley childrens hospital
            in
            > madera, but trying to get her case transferred to Stanford. does
            > anyone have any suggestions or recommendations on anything?
            >
            > we are thankful that she has not had a stroke, but has the signs
            or
            > the "tia's" that go along with it. they did the angiogram
            yesterday
            > and told me it was much worse then what they thought it was, its
            > affecting both sides of her brain, more so on the right side.
            >
            > can anyone help??
            >
            >
            >
            > ---------------------------------
            > 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! Photos: High-quality 4x6 digital prints for 25¢
            >
            > [Non-text portions of this message have been removed]
          • Rena
            Dr. Steinberg did the surgery. My son has regained 70% use of his left arm, he lost all use with the stroke. I don t know the technical term, but my son had
            Message 5 of 6 , Apr 21, 2004
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              Dr. Steinberg did the surgery. My son has regained 70% use of his left arm, he lost all use with the stroke. I don't know the technical term, but my son had the direct method done, it seems to be the best one for children. The first surgery went well and he was out of the hospital and site seeing 3 days after it. The second surgery was a week later and he had a few complication, so he was in the hospital for a week. My son also had mild Cerebal Palsy so I don't know if that has slowed the recovery of his arm, but he is doing great by my standards.

              mislittlefoot <mislittlefoot@...> wrote:thank you for the reply, i'm curious to what doctor at stanford did
              the surgery on your son? how is he doing now? what type of surgery
              did he have, and how long was the recovery period for him?

              --- In parentingchildrenwithmoyamoya@yahoogroups.com, Rena
              <oneofakindco@y...> wrote:
              > You are very lucky to get a diagnosis before a stroke. I am in CO
              and took my son to Stanford for surgey last June, he was 11 then.
              Make sure the doctors answer all the question you come up with, and
              let your daughter know that the surgey might seem scary, but she
              will heal fast from it. Feel free to email me, I will try to help
              all I can.
              > My son had a stroke in Dec and we had to wait till June for the
              surgery, I know the fear you are dealing with.
              >
              > mislittlefoot <mislittlefoot@y...> wrote:
              > my 9 yr old daughter was just diagnosed with moyamoya yesterday.
              > they say she needs surgery within the next month, this has been
              very
              > scary for us and we are looking for support from others that have
              > gone through this. we live in california, in what they call
              > the "central valley". we were going to valley childrens hospital
              in
              > madera, but trying to get her case transferred to Stanford. does
              > anyone have any suggestions or recommendations on anything?
              >
              > we are thankful that she has not had a stroke, but has the signs
              or
              > the "tia's" that go along with it. they did the angiogram
              yesterday
              > and told me it was much worse then what they thought it was, its
              > affecting both sides of her brain, more so on the right side.
              >
              > can anyone help??
              >
              >
              >
              > ---------------------------------
              > 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! Photos: High-quality 4x6 digital prints for 25�
              >
              > [Non-text portions of this message have been removed]



              ---------------------------------
              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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              Yahoo! Photos: High-quality 4x6 digital prints for 25�

              [Non-text portions of this message have been removed]
            • dsrm5482
              This may get to you after you ve made surgery decisions, but the important thing is to make a decision and not wait for a stroke to occur! Getting
              Message 6 of 6 , Jun 2, 2004
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                This may get to you after you've made surgery decisions, but the
                important thing is to make a decision and not wait for a stroke to
                occur! Getting blood/oxygen to the brain is very important!
                My son (unfortunately had no noticeable, prior symptoms) had a
                stroke on the left side, but of course had the artery trouble on
                both sides. Our Neurosurgeon, Dr. Dauser, did the EDAS (I think
                this is the "pial" procedure) that Dr. Scott does, plus a "Dura-
                inversion" where the Dura lining is cut on both sides of a healthy
                artery and each side is "flipped" (with the artery as it's axis) so
                the outer side is now inside lying on the brain. The outer side of
                the Dura is covered with blood vessels that then attach and grow to
                feed the brain so you have a much larger area of new colleral blood
                flow than with just the EDAS. Dr. Dauser published and artice on
                this in the Journal for Pediatric Neurosurgery in April '98, and he
                is with the Texas Children's Hospital in Houston.
                God bless you and carry you through this - He was my savior thru my
                son's sugeries and all that has followed; may He be yours, too!

                Sue
                --- In
                parentingchildrenwithmoyamoya@yahoogroups.com, "mislittlefoot"
                <mislittlefoot@y...> wrote:
                > my 9 yr old daughter was just diagnosed with moyamoya yesterday.
                > they say she needs surgery within the next month, this has been
                very
                > scary for us and we are looking for support from others that have
                > gone through this. we live in california, in what they call
                > the "central valley". we were going to valley childrens hospital
                in
                > madera, but trying to get her case transferred to Stanford. does
                > anyone have any suggestions or recommendations on anything?
                >
                > we are thankful that she has not had a stroke, but has the signs
                or
                > the "tia's" that go along with it. they did the angiogram
                yesterday
                > and told me it was much worse then what they thought it was, its
                > affecting both sides of her brain, more so on the right side.
                >
                > can anyone help??
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