Loading ...
Sorry, an error occurred while loading the content.

Re: Possible diagnosis

Expand Messages
  • djkrn2000
    ... effected. ... that ... should ... WE too are from Illinois and our son was diagnosed and treated two years ago in Indianapolis, Indiana. He is doing
    Message 1 of 9 , Aug 16, 2003
    View Source
    • 0 Attachment
      --- In parentingchildrenwithmoyamoya@yahoogroups.com, "tommyb_jodib"
      <tommyb_jodib@y...> wrote:
      > My son is twelve years old. We live in Illinois. He has
      > neurological deficits to both his right arm and leg, that are
      > constant. No other part of his body on the right side is
      effected.
      > Like facial droop or his eye. The doctors are still not certain
      that
      > it is Moya moya, but they are leaning that way and the angio
      should
      > be the definitive test.
      >
      >
      > Hi-
      WE too are from Illinois and our son was diagnosed and treated two
      years ago in Indianapolis, Indiana. He is doing wonderful. We have
      had a few setbacks, but overall he is a typical 15 year old. The
      doctors are wonderful at Riley. The surgeon was trained by Dr.
      Scott in Boston and does the same procedure.

      Where are you located in Illinois?

      Deb Kasper
      >
      >
      >
      >
      > .parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy McStravick"
      > <nancymcstravick@h...> wrote:
      > > Hi Tommy,
      > >
      > > My daughter, Emily (2 years old) had a stroke last March. At the
      > time
      > > they only thought she was having a "fit" as her right arm was
      > fitting. A
      > > few hours later, her right leg started to fit. She then lost the
      > power
      > > of her arm and leg for a few hours. She did not have any
      symptoms
      > with
      > > her face or anywhere else in her body. A few days later, she had
      a
      > > similar experience (to a lesser degree) on her left side. Again,
      > only
      > > her arm and leg.
      > >
      > > She has regained almost 100% usage on both sides.
      > >
      > > I'm not exactly sure what you mean by "has anybody else had
      stroke
      > like
      > > symptoms related to
      > > Moya Moya the really only affect the arm and leg".
      > >
      > > Do you mean that nothing else was affected? If so, then Yes
      Emily
      > did.
      > > She was mis-diagnosed in March as Enchaphalitis but has since
      been
      > > diagnosed with Moyamoya. She has had both sides of her brain
      > operated on
      > > last month and appears to be recovering. We live in the UK.
      > >
      > > How old is your son? Did I answer your question?
      > >
      > > Regards
      > >
      > > Nancy
      > >
      > >
      > >
      > >
      > >
      > >
      > >
      > > -----Original Message-----
      > > From: tommyb_jodib [mailto:tommyb_jodib@y...]
      > > Sent: 16 August 2003 18:36
      > > To: parentingchildrenwithmoyamoya@yahoogroups.com
      > > Subject: [Parenting Children with Moyamoya] Possible diagnosis
      > >
      > >
      > >
      > > My son is experiencing stroke like symptoms on his right side,
      and
      > > has been preliminarily diagnosed with Moya Moya. He has had a
      CT
      > > scan, two MRI's, and will have angio performed on the 19th. My
      > > question is, has anybody else had stroke like symptoms related
      to
      > > Moya Moya the really only affect the arm and leg? He has no
      other
      > > neurological deficits on his right side!!! Dr. Bermans Iskandar
      > from
      > > University of Wisconsin is his Neurosurgeon, and Dr. Scott was
      > > lecturing at the University the day of my sons second MRI and
      has
      > now
      > > jumped on board to assist with the case. They are not 100% sure
      > that
      > > it is Moya Moya yet. He has narrowing of the left internal
      > carotid,
      > > but they told us that the angio will be the definitive test in
      his
      > > diagnosis. I hope they are right!!!
      > >
      > >
      > >
      > >
      > >
      > >
      > > Yahoo! Groups Sponsor
      > >
      > >
      > >
      > > ADVERTISEMENT
      > >
      > >
      >
      <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
      7
      > 05
      > >
      >
      042054:HM/A=1717726/R=0/SIG=12idb73gp/*http:/ad.doubleclick.net/jump/
      N
      > 23
      > > 35.yahoo/B1197601.4;sz=300x250;ord=10610553702> click here
      > >
      > >
      > >
      > > <http://us.adserver.yahoo.com/l?
      > M=258294.3676376.4971093.1456759/D=egrou
      > > pmail/S=:HM/A=1717726/rand=245738770>
      > >
      > >
      > > To unsubscribe from this group, send an email to:
      > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
      > >
      > >
      > >
      > > Your use of Yahoo! Groups is subject to the Yahoo!
      > > <http://docs.yahoo.com/info/terms/> Terms of Service.
      > >
      > >
      > >
      > > [Non-text portions of this message have been removed]
    • Nancy McStravick
      In that case, it does sound like what my daughter had. She had no facial droop or her eyes and her MRI s show damage to both sides of her brain. Her ANGIOGRAM
      Message 2 of 9 , Aug 17, 2003
      View Source
      • 0 Attachment
        In that case, it does sound like what my daughter had. She had no facial
        droop or her eyes and her MRI's show damage to both sides of her brain.

        Her ANGIOGRAM confirmed that it is Moyamoya.

        I think you will find that the best advice is to get the surgery done
        ASAP

        Nancy



        -----Original Message-----
        From: tommyb_jodib [mailto:tommyb_jodib@...]
        Sent: 17 August 2003 01:42
        To: parentingchildrenwithmoyamoya@yahoogroups.com
        Subject: Re: [Parenting Children with Moyamoya] Possible diagnosis



        My son is twelve years old. We live in Illinois. He has
        neurological deficits to both his right arm and leg, that are
        constant. No other part of his body on the right side is effected.
        Like facial droop or his eye. The doctors are still not certain that
        it is Moya moya, but they are leaning that way and the angio should
        be the definitive test.







        .parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy McStravick"
        <nancymcstravick@h...> wrote:
        > Hi Tommy,
        >
        > My daughter, Emily (2 years old) had a stroke last March. At the
        time
        > they only thought she was having a "fit" as her right arm was
        fitting. A
        > few hours later, her right leg started to fit. She then lost the
        power
        > of her arm and leg for a few hours. She did not have any symptoms
        with
        > her face or anywhere else in her body. A few days later, she had a
        > similar experience (to a lesser degree) on her left side. Again,
        only
        > her arm and leg.
        >
        > She has regained almost 100% usage on both sides.
        >
        > I'm not exactly sure what you mean by "has anybody else had stroke
        like
        > symptoms related to
        > Moya Moya the really only affect the arm and leg".
        >
        > Do you mean that nothing else was affected? If so, then Yes Emily
        did.
        > She was mis-diagnosed in March as Enchaphalitis but has since been
        > diagnosed with Moyamoya. She has had both sides of her brain
        operated on
        > last month and appears to be recovering. We live in the UK.
        >
        > How old is your son? Did I answer your question?
        >
        > Regards
        >
        > Nancy
        >
        >
        >
        >
        >
        >
        >
        > -----Original Message-----
        > From: tommyb_jodib [mailto:tommyb_jodib@y...]
        > Sent: 16 August 2003 18:36
        > To: parentingchildrenwithmoyamoya@yahoogroups.com
        > Subject: [Parenting Children with Moyamoya] Possible diagnosis
        >
        >
        >
        > My son is experiencing stroke like symptoms on his right side, and
        > has been preliminarily diagnosed with Moya Moya. He has had a CT
        > scan, two MRI's, and will have angio performed on the 19th. My
        > question is, has anybody else had stroke like symptoms related to
        > Moya Moya the really only affect the arm and leg? He has no other
        > neurological deficits on his right side!!! Dr. Bermans Iskandar
        from
        > University of Wisconsin is his Neurosurgeon, and Dr. Scott was
        > lecturing at the University the day of my sons second MRI and has
        now
        > jumped on board to assist with the case. They are not 100% sure
        that
        > it is Moya Moya yet. He has narrowing of the left internal
        carotid,
        > but they told us that the angio will be the definitive test in his
        > diagnosis. I hope they are right!!!
        >
        >
        >
        >
        >
        >
        > Yahoo! Groups Sponsor
        >
        >
        >
        > ADVERTISEMENT
        >
        >
        <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=17
        05
        >
        042054:HM/A=1717726/R=0/SIG=12idb73gp/*http:/ad.doubleclick.net/jump/N
        23
        > 35.yahoo/B1197601.4;sz=300x250;ord=10610553702> click here
        >
        >
        >
        > <http://us.adserver.yahoo.com/l?
        M=258294.3676376.4971093.1456759/D=egrou
        > pmail/S=:HM/A=1717726/rand=245738770>
        >
        >
        > To unsubscribe from this group, send an email to:
        > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
        >
        >
        >
        > Your use of Yahoo! Groups is subject to the Yahoo!
        > <http://docs.yahoo.com/info/terms/> Terms of Service.
        >
        >
        >
        > [Non-text portions of this message have been removed]






        Yahoo! Groups Sponsor



        ADVERTISEMENT

        <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1705
        042054:HM/A=1717726/R=0/SIG=12i84sc9u/*http:/ad.doubleclick.net/jump/N23
        35.yahoo/B1197601.4;sz=300x250;ord=10610809282> click here



        <http://us.adserver.yahoo.com/l?M=258294.3676376.4971093.1456759/D=egrou
        pmail/S=:HM/A=1717726/rand=110769560>


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



        Your use of Yahoo! Groups is subject to the Yahoo!
        <http://docs.yahoo.com/info/terms/> Terms of Service.



        [Non-text portions of this message have been removed]
      • Nancy McStravick
        Deb, When you say he had some setbacks - what do you mean? Nancy ... From: djkrn2000 [mailto:no_reply@yahoogroups.com] Sent: 17 August 2003 04:22 To:
        Message 3 of 9 , Aug 17, 2003
        View Source
        • 0 Attachment
          Deb,

          When you say he had some setbacks - what do you mean?

          Nancy



          -----Original Message-----
          From: djkrn2000 [mailto:no_reply@yahoogroups.com]
          Sent: 17 August 2003 04:22
          To: parentingchildrenwithmoyamoya@yahoogroups.com
          Subject: [Parenting Children with Moyamoya] Re: Possible diagnosis



          --- In parentingchildrenwithmoyamoya@yahoogroups.com, "tommyb_jodib"
          <tommyb_jodib@y...> wrote:
          > My son is twelve years old. We live in Illinois. He has
          > neurological deficits to both his right arm and leg, that are
          > constant. No other part of his body on the right side is
          effected.
          > Like facial droop or his eye. The doctors are still not certain
          that
          > it is Moya moya, but they are leaning that way and the angio
          should
          > be the definitive test.
          >
          >
          > Hi-
          WE too are from Illinois and our son was diagnosed and treated two
          years ago in Indianapolis, Indiana. He is doing wonderful. We have
          had a few setbacks, but overall he is a typical 15 year old. The
          doctors are wonderful at Riley. The surgeon was trained by Dr.
          Scott in Boston and does the same procedure.

          Where are you located in Illinois?

          Deb Kasper
          >
          >
          >
          >
          > .parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy McStravick"
          > <nancymcstravick@h...> wrote:
          > > Hi Tommy,
          > >
          > > My daughter, Emily (2 years old) had a stroke last March. At the
          > time
          > > they only thought she was having a "fit" as her right arm was
          > fitting. A
          > > few hours later, her right leg started to fit. She then lost the
          > power
          > > of her arm and leg for a few hours. She did not have any
          symptoms
          > with
          > > her face or anywhere else in her body. A few days later, she had
          a
          > > similar experience (to a lesser degree) on her left side. Again,
          > only
          > > her arm and leg.
          > >
          > > She has regained almost 100% usage on both sides.
          > >
          > > I'm not exactly sure what you mean by "has anybody else had
          stroke
          > like
          > > symptoms related to
          > > Moya Moya the really only affect the arm and leg".
          > >
          > > Do you mean that nothing else was affected? If so, then Yes
          Emily
          > did.
          > > She was mis-diagnosed in March as Enchaphalitis but has since
          been
          > > diagnosed with Moyamoya. She has had both sides of her brain
          > operated on
          > > last month and appears to be recovering. We live in the UK.
          > >
          > > How old is your son? Did I answer your question?
          > >
          > > Regards
          > >
          > > Nancy
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          > > -----Original Message-----
          > > From: tommyb_jodib [mailto:tommyb_jodib@y...]
          > > Sent: 16 August 2003 18:36
          > > To: parentingchildrenwithmoyamoya@yahoogroups.com
          > > Subject: [Parenting Children with Moyamoya] Possible diagnosis
          > >
          > >
          > >
          > > My son is experiencing stroke like symptoms on his right side,
          and
          > > has been preliminarily diagnosed with Moya Moya. He has had a
          CT
          > > scan, two MRI's, and will have angio performed on the 19th. My
          > > question is, has anybody else had stroke like symptoms related
          to
          > > Moya Moya the really only affect the arm and leg? He has no
          other
          > > neurological deficits on his right side!!! Dr. Bermans Iskandar
          > from
          > > University of Wisconsin is his Neurosurgeon, and Dr. Scott was
          > > lecturing at the University the day of my sons second MRI and
          has
          > now
          > > jumped on board to assist with the case. They are not 100% sure
          > that
          > > it is Moya Moya yet. He has narrowing of the left internal
          > carotid,
          > > but they told us that the angio will be the definitive test in
          his
          > > diagnosis. I hope they are right!!!
          > >
          > >
          > >
          > >
          > >
          > >
          > > Yahoo! Groups Sponsor
          > >
          > >
          > >
          > > ADVERTISEMENT
          > >
          > >
          >
          <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
          7
          > 05
          > >
          >
          042054:HM/A=1717726/R=0/SIG=12idb73gp/*http:/ad.doubleclick.net/jump/
          N
          > 23
          > > 35.yahoo/B1197601.4;sz=300x250;ord=10610553702> click here
          > >
          > >
          > >
          > > <http://us.adserver.yahoo.com/l?
          > M=258294.3676376.4971093.1456759/D=egrou
          > > pmail/S=:HM/A=1717726/rand=245738770>
          > >
          > >
          > > To unsubscribe from this group, send an email to:
          > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
          > >
          > >
          > >
          > > Your use of Yahoo! Groups is subject to the Yahoo!
          > > <http://docs.yahoo.com/info/terms/> Terms of Service.
          > >
          > >
          > >
          > > [Non-text portions of this message have been removed]






          Yahoo! Groups Sponsor



          ADVERTISEMENT

          <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1705
          042054:HM/A=1717726/R=0/SIG=12iqvhlm6/*http:/ad.doubleclick.net/jump/N23
          35.yahoo/B1197601.4;sz=300x250;ord=10610904972> click here



          <http://us.adserver.yahoo.com/l?M=258294.3676376.4971093.1456759/D=egrou
          pmail/S=:HM/A=1717726/rand=530679456>


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



          Your use of Yahoo! Groups is subject to the Yahoo!
          <http://docs.yahoo.com/info/terms/> Terms of Service.



          [Non-text portions of this message have been removed]
        • djkrn2000
          Nancy- He had continuing TIA s after surgery as expected, but they were less frequent and less severe, then last November, out of the blue he had a small
          Message 4 of 9 , Aug 17, 2003
          View Source
          • 0 Attachment
            Nancy- He had continuing TIA's after surgery as expected, but they
            were less frequent and less severe, then last November, out of the
            blue he had a small stroke, and lost the use of his right hand, but
            fortunately he got back all of his function in it. He has also had
            some problems in school since his surgeries, but we are dealing with
            it, and he had a period of time where he was angry and threatened
            suicide because of the changes in his life.

            I feel that all in all these are minor things compared to how things
            could have turned out, and he is now very thankful and is a very
            typical 15 year old boy.

            I think it was a very difficult thing for all of us and he reacted
            to his anger with the threat, but really did not intend to carry out
            his threat. Of course we were very protective of him and wanted him
            to be close in case of a problem , and teenagers do not want to be
            tied so closely to their parents, so this was bad in his eyes.

            Let me know if I can answer any more questions for you. I wish that
            I had known about this when we were going through it all, but I
            didn't find the group until after it was all over.

            Deb



            --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy
            McStravick" <nancymcstravick@h...> wrote:
            > Deb,
            >
            > When you say he had some setbacks - what do you mean?
            >
            > Nancy
            >
            >
            >
            > -----Original Message-----
            > From: djkrn2000 [mailto:no_reply@yahoogroups.com]
            > Sent: 17 August 2003 04:22
            > To: parentingchildrenwithmoyamoya@yahoogroups.com
            > Subject: [Parenting Children with Moyamoya] Re: Possible diagnosis
            >
            >
            >
            > --- In
            parentingchildrenwithmoyamoya@yahoogroups.com, "tommyb_jodib"
            > <tommyb_jodib@y...> wrote:
            > > My son is twelve years old. We live in Illinois. He has
            > > neurological deficits to both his right arm and leg, that are
            > > constant. No other part of his body on the right side is
            > effected.
            > > Like facial droop or his eye. The doctors are still not certain
            > that
            > > it is Moya moya, but they are leaning that way and the angio
            > should
            > > be the definitive test.
            > >
            > >
            > > Hi-
            > WE too are from Illinois and our son was diagnosed and treated two
            > years ago in Indianapolis, Indiana. He is doing wonderful. We
            have
            > had a few setbacks, but overall he is a typical 15 year old. The
            > doctors are wonderful at Riley. The surgeon was trained by Dr.
            > Scott in Boston and does the same procedure.
            >
            > Where are you located in Illinois?
            >
            > Deb Kasper
            > >
            > >
            > >
            > >
            > > .parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy
            McStravick"
            > > <nancymcstravick@h...> wrote:
            > > > Hi Tommy,
            > > >
            > > > My daughter, Emily (2 years old) had a stroke last March. At
            the
            > > time
            > > > they only thought she was having a "fit" as her right arm was
            > > fitting. A
            > > > few hours later, her right leg started to fit. She then lost
            the
            > > power
            > > > of her arm and leg for a few hours. She did not have any
            > symptoms
            > > with
            > > > her face or anywhere else in her body. A few days later, she
            had
            > a
            > > > similar experience (to a lesser degree) on her left side.
            Again,
            > > only
            > > > her arm and leg.
            > > >
            > > > She has regained almost 100% usage on both sides.
            > > >
            > > > I'm not exactly sure what you mean by "has anybody else had
            > stroke
            > > like
            > > > symptoms related to
            > > > Moya Moya the really only affect the arm and leg".
            > > >
            > > > Do you mean that nothing else was affected? If so, then Yes
            > Emily
            > > did.
            > > > She was mis-diagnosed in March as Enchaphalitis but has since
            > been
            > > > diagnosed with Moyamoya. She has had both sides of her brain
            > > operated on
            > > > last month and appears to be recovering. We live in the UK.
            > > >
            > > > How old is your son? Did I answer your question?
            > > >
            > > > Regards
            > > >
            > > > Nancy
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > > -----Original Message-----
            > > > From: tommyb_jodib [mailto:tommyb_jodib@y...]
            > > > Sent: 16 August 2003 18:36
            > > > To: parentingchildrenwithmoyamoya@yahoogroups.com
            > > > Subject: [Parenting Children with Moyamoya] Possible diagnosis
            > > >
            > > >
            > > >
            > > > My son is experiencing stroke like symptoms on his right side,
            > and
            > > > has been preliminarily diagnosed with Moya Moya. He has had a
            > CT
            > > > scan, two MRI's, and will have angio performed on the 19th.
            My
            > > > question is, has anybody else had stroke like symptoms related
            > to
            > > > Moya Moya the really only affect the arm and leg? He has no
            > other
            > > > neurological deficits on his right side!!! Dr. Bermans
            Iskandar
            > > from
            > > > University of Wisconsin is his Neurosurgeon, and Dr. Scott was
            > > > lecturing at the University the day of my sons second MRI and
            > has
            > > now
            > > > jumped on board to assist with the case. They are not 100%
            sure
            > > that
            > > > it is Moya Moya yet. He has narrowing of the left internal
            > > carotid,
            > > > but they told us that the angio will be the definitive test in
            > his
            > > > diagnosis. I hope they are right!!!
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > > Yahoo! Groups Sponsor
            > > >
            > > >
            > > >
            > > > ADVERTISEMENT
            > > >
            > > >
            > >
            >
            <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
            > 7
            > > 05
            > > >
            > >
            >
            042054:HM/A=1717726/R=0/SIG=12idb73gp/*http:/ad.doubleclick.net/jump/
            > N
            > > 23
            > > > 35.yahoo/B1197601.4;sz=300x250;ord=10610553702> click here
            > > >
            > > >
            > > >
            > > > <http://us.adserver.yahoo.com/l?
            > > M=258294.3676376.4971093.1456759/D=egrou
            > > > pmail/S=:HM/A=1717726/rand=245738770>
            > > >
            > > >
            > > > To unsubscribe from this group, send an email to:
            > > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
            > > >
            > > >
            > > >
            > > > Your use of Yahoo! Groups is subject to the Yahoo!
            > > > <http://docs.yahoo.com/info/terms/> Terms of Service.
            > > >
            > > >
            > > >
            > > > [Non-text portions of this message have been removed]
            >
            >
            >
            >
            >
            >
            > Yahoo! Groups Sponsor
            >
            >
            >
            > ADVERTISEMENT
            >
            >
            <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
            705
            >
            042054:HM/A=1717726/R=0/SIG=12iqvhlm6/*http:/ad.doubleclick.net/jump/
            N23
            > 35.yahoo/B1197601.4;sz=300x250;ord=10610904972> click here
            >
            >
            >
            > <http://us.adserver.yahoo.com/l?
            M=258294.3676376.4971093.1456759/D=egrou
            > pmail/S=:HM/A=1717726/rand=530679456>
            >
            >
            > To unsubscribe from this group, send an email to:
            > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
            >
            >
            >
            > Your use of Yahoo! Groups is subject to the Yahoo!
            > <http://docs.yahoo.com/info/terms/> Terms of Service.
            >
            >
            >
            > [Non-text portions of this message have been removed]
          • LONNIE NORMAN
            debi, How old was your son when diagnosed with moyamoya? djkrn2000 wrote:Nancy- He had continuing TIA s after surgery as expected,
            Message 5 of 9 , Aug 17, 2003
            View Source
            • 0 Attachment
              debi, How old was your son when diagnosed with moyamoya?

              djkrn2000 <no_reply@yahoogroups.com> wrote:Nancy- He had continuing TIA's after surgery as expected, but they
              were less frequent and less severe, then last November, out of the
              blue he had a small stroke, and lost the use of his right hand, but
              fortunately he got back all of his function in it. He has also had
              some problems in school since his surgeries, but we are dealing with
              it, and he had a period of time where he was angry and threatened
              suicide because of the changes in his life.

              I feel that all in all these are minor things compared to how things
              could have turned out, and he is now very thankful and is a very
              typical 15 year old boy.

              I think it was a very difficult thing for all of us and he reacted
              to his anger with the threat, but really did not intend to carry out
              his threat. Of course we were very protective of him and wanted him
              to be close in case of a problem , and teenagers do not want to be
              tied so closely to their parents, so this was bad in his eyes.

              Let me know if I can answer any more questions for you. I wish that
              I had known about this when we were going through it all, but I
              didn't find the group until after it was all over.

              Deb



              --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy
              McStravick" <nancymcstravick@h...> wrote:
              > Deb,
              >
              > When you say he had some setbacks - what do you mean?
              >
              > Nancy
              >
              >
              >
              > -----Original Message-----
              > From: djkrn2000 [mailto:no_reply@yahoogroups.com]
              > Sent: 17 August 2003 04:22
              > To: parentingchildrenwithmoyamoya@yahoogroups.com
              > Subject: [Parenting Children with Moyamoya] Re: Possible diagnosis
              >
              >
              >
              > --- In
              parentingchildrenwithmoyamoya@yahoogroups.com, "tommyb_jodib"
              > <tommyb_jodib@y...> wrote:
              > > My son is twelve years old. We live in Illinois. He has
              > > neurological deficits to both his right arm and leg, that are
              > > constant. No other part of his body on the right side is
              > effected.
              > > Like facial droop or his eye. The doctors are still not certain
              > that
              > > it is Moya moya, but they are leaning that way and the angio
              > should
              > > be the definitive test.
              > >
              > >
              > > Hi-
              > WE too are from Illinois and our son was diagnosed and treated two
              > years ago in Indianapolis, Indiana. He is doing wonderful. We
              have
              > had a few setbacks, but overall he is a typical 15 year old. The
              > doctors are wonderful at Riley. The surgeon was trained by Dr.
              > Scott in Boston and does the same procedure.
              >
              > Where are you located in Illinois?
              >
              > Deb Kasper
              > >
              > >
              > >
              > >
              > > .parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy
              McStravick"
              > > <nancymcstravick@h...> wrote:
              > > > Hi Tommy,
              > > >
              > > > My daughter, Emily (2 years old) had a stroke last March. At
              the
              > > time
              > > > they only thought she was having a "fit" as her right arm was
              > > fitting. A
              > > > few hours later, her right leg started to fit. She then lost
              the
              > > power
              > > > of her arm and leg for a few hours. She did not have any
              > symptoms
              > > with
              > > > her face or anywhere else in her body. A few days later, she
              had
              > a
              > > > similar experience (to a lesser degree) on her left side.
              Again,
              > > only
              > > > her arm and leg.
              > > >
              > > > She has regained almost 100% usage on both sides.
              > > >
              > > > I'm not exactly sure what you mean by "has anybody else had
              > stroke
              > > like
              > > > symptoms related to
              > > > Moya Moya the really only affect the arm and leg".
              > > >
              > > > Do you mean that nothing else was affected? If so, then Yes
              > Emily
              > > did.
              > > > She was mis-diagnosed in March as Enchaphalitis but has since
              > been
              > > > diagnosed with Moyamoya. She has had both sides of her brain
              > > operated on
              > > > last month and appears to be recovering. We live in the UK.
              > > >
              > > > How old is your son? Did I answer your question?
              > > >
              > > > Regards
              > > >
              > > > Nancy
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > > > -----Original Message-----
              > > > From: tommyb_jodib [mailto:tommyb_jodib@y...]
              > > > Sent: 16 August 2003 18:36
              > > > To: parentingchildrenwithmoyamoya@yahoogroups.com
              > > > Subject: [Parenting Children with Moyamoya] Possible diagnosis
              > > >
              > > >
              > > >
              > > > My son is experiencing stroke like symptoms on his right side,
              > and
              > > > has been preliminarily diagnosed with Moya Moya. He has had a
              > CT
              > > > scan, two MRI's, and will have angio performed on the 19th.
              My
              > > > question is, has anybody else had stroke like symptoms related
              > to
              > > > Moya Moya the really only affect the arm and leg? He has no
              > other
              > > > neurological deficits on his right side!!! Dr. Bermans
              Iskandar
              > > from
              > > > University of Wisconsin is his Neurosurgeon, and Dr. Scott was
              > > > lecturing at the University the day of my sons second MRI and
              > has
              > > now
              > > > jumped on board to assist with the case. They are not 100%
              sure
              > > that
              > > > it is Moya Moya yet. He has narrowing of the left internal
              > > carotid,
              > > > but they told us that the angio will be the definitive test in
              > his
              > > > diagnosis. I hope they are right!!!
              > > >
              > > >
              > > >
              > > >
              > > >
              > > >
              > > > Yahoo! Groups Sponsor
              > > >
              > > >
              > > >
              > > > ADVERTISEMENT
              > > >
              > > >
              > >
              >
              <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
              > 7
              > > 05
              > > >
              > >
              >
              042054:HM/A=1717726/R=0/SIG=12idb73gp/*http:/ad.doubleclick.net/jump/
              > N
              > > 23
              > > > 35.yahoo/B1197601.4;sz=300x250;ord=10610553702> click here
              > > >
              > > >
              > > >
              > > > <http://us.adserver.yahoo.com/l?
              > > M=258294.3676376.4971093.1456759/D=egrou
              > > > pmail/S=:HM/A=1717726/rand=245738770>
              > > >
              > > >
              > > > To unsubscribe from this group, send an email to:
              > > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
              > > >
              > > >
              > > >
              > > > Your use of Yahoo! Groups is subject to the Yahoo!
              > > > <http://docs.yahoo.com/info/terms/> Terms of Service.
              > > >
              > > >
              > > >
              > > > [Non-text portions of this message have been removed]
              >
              >
              >
              >
              >
              >
              > Yahoo! Groups Sponsor
              >
              >
              >
              > ADVERTISEMENT
              >
              >
              <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
              705
              >
              042054:HM/A=1717726/R=0/SIG=12iqvhlm6/*http:/ad.doubleclick.net/jump/
              N23
              > 35.yahoo/B1197601.4;sz=300x250;ord=10610904972> click here
              >
              >
              >
              > <http://us.adserver.yahoo.com/l?
              M=258294.3676376.4971093.1456759/D=egrou
              > pmail/S=:HM/A=1717726/rand=530679456>
              >
              >
              > To unsubscribe from this group, send an email to:
              > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
              >
              >
              >
              > Your use of Yahoo! Groups is subject to the Yahoo!
              > <http://docs.yahoo.com/info/terms/> Terms of Service.
              >
              >
              >
              > [Non-text portions of this message have been removed]


              Yahoo! Groups SponsorADVERTISEMENT

              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! SiteBuilder - Free, easy-to-use web site design software

              [Non-text portions of this message have been removed]
            • djkrn2000
              He was 13 when diagnosed and he had surgery on both sides. Debbie ... continuing TIA s after surgery as expected, but they ... but ... had ... with ... things
              Message 6 of 9 , Aug 21, 2003
              View Source
              • 0 Attachment
                He was 13 when diagnosed and he had surgery on both sides.

                Debbie
                --- In parentingchildrenwithmoyamoya@yahoogroups.com, LONNIE NORMAN
                <lnorman88@y...> wrote:
                > debi, How old was your son when diagnosed with moyamoya?
                >
                > djkrn2000 <no_reply@yahoogroups.com> wrote:Nancy- He had
                continuing TIA's after surgery as expected, but they
                > were less frequent and less severe, then last November, out of the
                > blue he had a small stroke, and lost the use of his right hand,
                but
                > fortunately he got back all of his function in it. He has also
                had
                > some problems in school since his surgeries, but we are dealing
                with
                > it, and he had a period of time where he was angry and threatened
                > suicide because of the changes in his life.
                >
                > I feel that all in all these are minor things compared to how
                things
                > could have turned out, and he is now very thankful and is a very
                > typical 15 year old boy.
                >
                > I think it was a very difficult thing for all of us and he reacted
                > to his anger with the threat, but really did not intend to carry
                out
                > his threat. Of course we were very protective of him and wanted
                him
                > to be close in case of a problem , and teenagers do not want to be
                > tied so closely to their parents, so this was bad in his eyes.
                >
                > Let me know if I can answer any more questions for you. I wish
                that
                > I had known about this when we were going through it all, but I
                > didn't find the group until after it was all over.
                >
                > Deb
                >
                >
                >
                > --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy
                > McStravick" <nancymcstravick@h...> wrote:
                > > Deb,
                > >
                > > When you say he had some setbacks - what do you mean?
                > >
                > > Nancy
                > >
                > >
                > >
                > > -----Original Message-----
                > > From: djkrn2000 [mailto:no_reply@yahoogroups.com]
                > > Sent: 17 August 2003 04:22
                > > To: parentingchildrenwithmoyamoya@yahoogroups.com
                > > Subject: [Parenting Children with Moyamoya] Re: Possible
                diagnosis
                > >
                > >
                > >
                > > --- In
                > parentingchildrenwithmoyamoya@yahoogroups.com, "tommyb_jodib"
                > > <tommyb_jodib@y...> wrote:
                > > > My son is twelve years old. We live in Illinois. He has
                > > > neurological deficits to both his right arm and leg, that are
                > > > constant. No other part of his body on the right side is
                > > effected.
                > > > Like facial droop or his eye. The doctors are still not
                certain
                > > that
                > > > it is Moya moya, but they are leaning that way and the angio
                > > should
                > > > be the definitive test.
                > > >
                > > >
                > > > Hi-
                > > WE too are from Illinois and our son was diagnosed and treated
                two
                > > years ago in Indianapolis, Indiana. He is doing wonderful. We
                > have
                > > had a few setbacks, but overall he is a typical 15 year old.
                The
                > > doctors are wonderful at Riley. The surgeon was trained by Dr.
                > > Scott in Boston and does the same procedure.
                > >
                > > Where are you located in Illinois?
                > >
                > > Deb Kasper
                > > >
                > > >
                > > >
                > > >
                > > > .parentingchildrenwithmoyamoya@yahoogroups.com, "Nancy
                > McStravick"
                > > > <nancymcstravick@h...> wrote:
                > > > > Hi Tommy,
                > > > >
                > > > > My daughter, Emily (2 years old) had a stroke last March. At
                > the
                > > > time
                > > > > they only thought she was having a "fit" as her right arm
                was
                > > > fitting. A
                > > > > few hours later, her right leg started to fit. She then lost
                > the
                > > > power
                > > > > of her arm and leg for a few hours. She did not have any
                > > symptoms
                > > > with
                > > > > her face or anywhere else in her body. A few days later, she
                > had
                > > a
                > > > > similar experience (to a lesser degree) on her left side.
                > Again,
                > > > only
                > > > > her arm and leg.
                > > > >
                > > > > She has regained almost 100% usage on both sides.
                > > > >
                > > > > I'm not exactly sure what you mean by "has anybody else had
                > > stroke
                > > > like
                > > > > symptoms related to
                > > > > Moya Moya the really only affect the arm and leg".
                > > > >
                > > > > Do you mean that nothing else was affected? If so, then Yes
                > > Emily
                > > > did.
                > > > > She was mis-diagnosed in March as Enchaphalitis but has
                since
                > > been
                > > > > diagnosed with Moyamoya. She has had both sides of her brain
                > > > operated on
                > > > > last month and appears to be recovering. We live in the UK.
                > > > >
                > > > > How old is your son? Did I answer your question?
                > > > >
                > > > > Regards
                > > > >
                > > > > Nancy
                > > > >
                > > > >
                > > > >
                > > > >
                > > > >
                > > > >
                > > > >
                > > > > -----Original Message-----
                > > > > From: tommyb_jodib [mailto:tommyb_jodib@y...]
                > > > > Sent: 16 August 2003 18:36
                > > > > To: parentingchildrenwithmoyamoya@yahoogroups.com
                > > > > Subject: [Parenting Children with Moyamoya] Possible
                diagnosis
                > > > >
                > > > >
                > > > >
                > > > > My son is experiencing stroke like symptoms on his right
                side,
                > > and
                > > > > has been preliminarily diagnosed with Moya Moya. He has had
                a
                > > CT
                > > > > scan, two MRI's, and will have angio performed on the 19th.
                > My
                > > > > question is, has anybody else had stroke like symptoms
                related
                > > to
                > > > > Moya Moya the really only affect the arm and leg? He has no
                > > other
                > > > > neurological deficits on his right side!!! Dr. Bermans
                > Iskandar
                > > > from
                > > > > University of Wisconsin is his Neurosurgeon, and Dr. Scott
                was
                > > > > lecturing at the University the day of my sons second MRI
                and
                > > has
                > > > now
                > > > > jumped on board to assist with the case. They are not 100%
                > sure
                > > > that
                > > > > it is Moya Moya yet. He has narrowing of the left internal
                > > > carotid,
                > > > > but they told us that the angio will be the definitive test
                in
                > > his
                > > > > diagnosis. I hope they are right!!!
                > > > >
                > > > >
                > > > >
                > > > >
                > > > >
                > > > >
                > > > > Yahoo! Groups Sponsor
                > > > >
                > > > >
                > > > >
                > > > > ADVERTISEMENT
                > > > >
                > > > >
                > > >
                > >
                >
                <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
                > > 7
                > > > 05
                > > > >
                > > >
                > >
                >
                042054:HM/A=1717726/R=0/SIG=12idb73gp/*http:/ad.doubleclick.net/jump/
                > > N
                > > > 23
                > > > > 35.yahoo/B1197601.4;sz=300x250;ord=10610553702> click here
                > > > >
                > > > >
                > > > >
                > > > > <http://us.adserver.yahoo.com/l?
                > > > M=258294.3676376.4971093.1456759/D=egrou
                > > > > pmail/S=:HM/A=1717726/rand=245738770>
                > > > >
                > > > >
                > > > > To unsubscribe from this group, send an email to:
                > > > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                > > > >
                > > > >
                > > > >
                > > > > Your use of Yahoo! Groups is subject to the Yahoo!
                > > > > <http://docs.yahoo.com/info/terms/> Terms of Service.
                > > > >
                > > > >
                > > > >
                > > > > [Non-text portions of this message have been removed]
                > >
                > >
                > >
                > >
                > >
                > >
                > > Yahoo! Groups Sponsor
                > >
                > >
                > >
                > > ADVERTISEMENT
                > >
                > >
                >
                <http://rd.yahoo.com/M=258294.3676376.4971093.1456759/D=egroupweb/S=1
                > 705
                > >
                >
                042054:HM/A=1717726/R=0/SIG=12iqvhlm6/*http:/ad.doubleclick.net/jump/
                > N23
                > > 35.yahoo/B1197601.4;sz=300x250;ord=10610904972> click here
                > >
                > >
                > >
                > > <http://us.adserver.yahoo.com/l?
                > M=258294.3676376.4971093.1456759/D=egrou
                > > pmail/S=:HM/A=1717726/rand=530679456>
                > >
                > >
                > > To unsubscribe from this group, send an email to:
                > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                > >
                > >
                > >
                > > Your use of Yahoo! Groups is subject to the Yahoo!
                > > <http://docs.yahoo.com/info/terms/> Terms of Service.
                > >
                > >
                > >
                > > [Non-text portions of this message have been removed]
                >
                >
                > Yahoo! Groups SponsorADVERTISEMENT
                >
                > 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! SiteBuilder - Free, easy-to-use web site design software
                >
                > [Non-text portions of this message have been removed]
              Your message has been successfully submitted and would be delivered to recipients shortly.