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

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  • Marcia
    My daughter, Chloe, was diagnosed at 14 months after having a stroke Christmas morning - right frontal lobe. We went from Florida to Dr. Scott to have surgery
    Message 1 of 5 , Aug 11, 2004
      My daughter, Chloe, was diagnosed at 14 months after having a stroke Christmas morning - right frontal lobe. We went from Florida to Dr. Scott to have surgery on both sides one month later. She has recovered almost 100%--no headaches, no TIAs. She has a little weakness in her left leg, but has therapy weekly and is now walking normally. I went for her six month post-surgeries MRI here in Jacksonville at Wolson's children's hospital 2 weeks ago, but did not go through with it because the anastesiologist did not have a clue about special anastesia protocol for moya moya. He agreed with me that we should not take a chance. He will consult with Dr. Scott, then we may reschedule. I return to Dr. Scott in February so she can have an arteriogram, which will ultimately measure her progress. I hate to be so blunt, but knowing what I know now, I would sell my house and live in my car to get a baby to Dr. Scott if there is the slightest thought that the baby has moya moya.
      ----- Original Message -----
      From: michelle.marengo@...
      To: parentingchildrenwithmoyamoya@yahoogroups.com
      Cc: dsrm5482 ; parentingchildrenwithmoyamoya@yahoogroups.com
      Sent: Wednesday, August 11, 2004 4:39 PM
      Subject: Re: [Parenting Children with Moyamoya] Re: I need more info


      My son was dx'd after a TIA last fall, and the surgery took place 2 weeks after diagnosis. It was 99% sure after the MRI, but then 100% sure after the angiogram. Where are you? Are you near Boston at all? I would see if he concurs with your doctor...the carotid artery is in the front, right? Could that be the difference - which arteries it's affecting?

      David is 9 months out of surgery now, and just had a TIA (after all this time!) We're going back in for an MRI this Friday night, but Dr. Scott did say that this could happen up to a year after the surgery. Wish us luck...

      Take care - and let me know if I can help! Michelle

      -------------- Original message from "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 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


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    • michelle.marengo@att.net
      Marcia - I m SO glad to hear that Chloe is doing so well...thank God and Dr. Scott! :) David and I were able to do the Walk for Miracles here in Boston for
      Message 2 of 5 , Aug 12, 2004
        Marcia - I'm SO glad to hear that Chloe is doing so well...thank God and Dr. Scott! :) David and I were able to do the "Walk for Miracles" here in Boston for Children's Hospital, and it's overwhelming how many people that man has helped! He's truly a miracle worker...we're very lucky to live only 45 minutes from him!

        Take care, and give Chloe a big squeeze from the North!!

        Michelle & David (almost 7 now!)

        -------------- Original message from "Marcia" : --------------
        My daughter, Chloe, was diagnosed at 14 months after having a stroke Christmas morning - right frontal lobe. We went from Florida to Dr. Scott to have surgery on both sides one month later. She has recovered almost 100%--no headaches, no TIAs. She has a little weakness in her left leg, but has therapy weekly and is now walking normally. I went for her six month post-surgeries MRI here in Jacksonville at Wolson's children's hospital 2 weeks ago, but did not go through with it because the anastesiologist did not have a clue about special anastesia protocol for moya moya. He agreed with me that we should not take a chance. He will consult with Dr. Scott, then we may reschedule. I return to Dr. Scott in February so she can have an arteriogram, which will ultimately measure her progress. I hate to be so blunt, but knowing what I know now, I would sell my house and live in my car to get a baby to Dr. Scott if there is the slightest thought that the baby has moya moya.
        ----- Original Message -----
        From: michelle.marengo@...
        To: parentingchildrenwithmoyamoya@yahoogroups.com
        Cc: dsrm5482 ; parentingchildrenwithmoyamoya@yahoogroups.com
        Sent: Wednesday, August 11, 2004 4:39 PM
        Subject: Re: [Parenting Children with Moyamoya] Re: I need more info


        My son was dx'd after a TIA last fall, and the surgery took place 2 weeks after diagnosis. It was 99% sure after the MRI, but then 100% sure after the angiogram. Where are you? Are you near Boston at all? I would see if he concurs with your doctor...the carotid artery is in the front, right? Could that be the difference - which arteries it's affecting?

        David is 9 months out of surgery now, and just had a TIA (after all this time!) We're going back in for an MRI this Friday night, but Dr. Scott did say that this could happen up to a year after the surgery. Wish us luck...

        Take care - and let me know if I can help! Michelle

        -------------- Original message from "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 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


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        parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

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

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


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        ADVERTISEMENT





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

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

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

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



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


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        To visit your group on the web, go to:
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        [Non-text portions of this message have been removed]
      • gosline sara
        Hi, my name is Sara. I am sorry I am so late to respond. But, I was dx with MM at the age of 9. I am now 23. I have never had a stroke (thank God!!). I would
        Message 3 of 5 , Oct 1, 2004
          Hi, my name is Sara. I am sorry I am so late to
          respond. But, I was dx with MM at the age of 9. I am
          now 23. I have never had a stroke (thank God!!). I
          would think the arterirgram is the best way to dx MM.
          When I first started having TIA's, I had an
          arteriorgram, and they told my parents I DID NOT have
          MM, because it only was on one sidde. Then, a year
          later, I had another one, and it had progressed. This
          is when they FINALY diagnosed me. I was very luck I
          didn't have a stroke while waiting for them to get
          their acts together...

          I would suggest seeing a doctor who is experienced
          with MM. I know Dr. Scott is a really good one. The
          reason I suggest this is because many doctors want to
          call MM by "other names" when it is in fact Moya
          Moya...

          I hope all is going well. Please keep us posted. Thank
          you! Feel free to email me if you want. Just be sure
          to put MM in the subject so I don't delete it...

          God Bless your family!

          Sara
          --- michelle.marengo@... wrote:

          > My son was dx'd after a TIA last fall, and the
          > surgery took place 2 weeks after diagnosis. It was
          > 99% sure after the MRI, but then 100% sure after the
          > angiogram. Where are you? Are you near Boston at
          > all? I would see if he concurs with your
          > doctor...the carotid artery is in the front, right?
          > Could that be the difference - which arteries it's
          > affecting?
          >
          > David is 9 months out of surgery now, and just had a
          > TIA (after all this time!) We're going back in for
          > an MRI this Friday night, but Dr. Scott did say that
          > this could happen up to a year after the surgery.
          > Wish us luck...
          >
          > Take care - and let me know if I can help! Michelle
          >
          > -------------- Original message from "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 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
          >
          >
          > Yahoo! Groups Sponsor
          > ADVERTISEMENT
          >
          >
          >
          >
          >
          >
          > 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.
          >
          > [Non-text portions of this message have been
          > removed]
          >
          >





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