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RE: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya

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  • Nancy McStravick
    Hi Lori, I don t know the exact condition but I have heard of a connection with certain eye conditions and moyamoya. Sorry I can t be more specific. Nancy To:
    Message 1 of 8 , Feb 19, 2008
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      Hi Lori,
      I don't know the exact condition but I have heard of a connection with certain eye conditions and moyamoya.
      Sorry I can't be more specific.
      Nancy


      To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: jnokes5@...: Tue, 19 Feb 2008 03:00:13 +0000Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya




      --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora" <lorabeas@...> wrote:>> Does anyone's child have ocular malformations? My daughter has a visual > defect in each eye. She has optic nerve hypoplasia in her left eye > (which I have been told can be associated with MMD). In her right eye, > she has either a coloboma or morning glory (optic disc anomaly). > She also has other conditions other than just the vision. > > She is still doing well. It has been one month since her last EDAS for > bilateral MMD. > > Thanks, > Lora>Lora,My daughter, Paige, who is now almost 6 yrs old was diagnosed with MMD in early 2006 after suffering a stroke in December of 2005. She doesn't have any malformations however she has an optic pathway glioma(tumor in her optic nerve) but it was caused by another disorder called Neurofibromatosis which she was diagnosed with at age 6 months. I have learned alot about MMD since her diagnosis but I did not know that it also caused optic malformations. I wish you and your family all the best.Your daughter will be in our thoughts and prayers. Best of luck,Jennifer






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    • lora beasley
      Hi Jennifer, Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but
      Message 2 of 8 , Feb 19, 2008
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        Hi Jennifer,
        Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.

        Lora

        To: parentingchildrenwithmoyamoya@yahoogroups.com
        From: jnokes5@...
        Date: Tue, 19 Feb 2008 03:00:13 +0000
        Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya




















        --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"

        <lorabeas@...> wrote:

        >

        > Does anyone's child have ocular malformations? My daughter has a

        visual

        > defect in each eye. She has optic nerve hypoplasia in her left eye

        > (which I have been told can be associated with MMD). In her right

        eye,

        > she has either a coloboma or morning glory (optic disc anomaly).

        > She also has other conditions other than just the vision.

        >

        > She is still doing well. It has been one month since her last EDAS

        for

        > bilateral MMD.

        >

        > Thanks,

        > Lora

        >

        Lora,

        My daughter, Paige, who is now almost 6 yrs old was diagnosed with

        MMD in early 2006 after suffering a stroke in December of 2005. She

        doesn't have any malformations however she has an optic pathway

        glioma(tumor in her optic nerve) but it was caused by another

        disorder called Neurofibromatosis which she was diagnosed with at

        age 6 months. I have learned alot about MMD since her diagnosis but

        I did not know that it also caused optic malformations. I wish you

        and your family all the best.Your daughter will be in our thoughts

        and prayers.



        Best of luck,

        Jennifer
























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      • Jennifer Elrod
        Lora, Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the
        Message 3 of 8 , Feb 19, 2008
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          Lora,
          Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the moyamoya.com message board. I believe that her daughter wasn't diagnosed until after her surgeries for MMD. Paige on the other hand was diagnosed at 6 months( long before her MMD diagnosis. I also have become really good friends with another couple whose 13 yr old daughter has both NF and MM. She too is Dr. Steinberg's patient. We were not able to get Paige's insurance to pay for her to travel out of state to see Dr.Steinberg but we were extremely lucky. Paige is a patient at St. Jude Children's Hospital in Memphis,TN for her tumor in her optic nerve and they set us up with a wonderful neurosurgeon in Memphis( Dr. Frederick Boop) who did both of Paige's bypass surgeries. Of course Steinberg was my first choice but I feel like we got the next best thing. Thank you so much for contacting me. This group and the moyamoya.com
          website have both been a huge blessing for me. Once again, I hope all goes well with your daughter. By the way, has she had any more problems since her surgery? Please feel free to contact me anytime.

          Best wishes,
          Jennifer



          Hi Jennifer,
          Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.

          Lora

          To: parentingchildrenwithmoyamoya@yahoogroups.com
          From: jnokes5@...
          Date: Tue, 19 Feb 2008 03:00:13 +0000
          Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya

          --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"

          <lorabeas@...> wrote:

          >

          > Does anyone's child have ocular malformations? My daughter has a

          visual

          > defect in each eye. She has optic nerve hypoplasia in her left eye

          > (which I have been told can be associated with MMD). In her right

          eye,

          > she has either a coloboma or morning glory (optic disc anomaly).

          > She also has other conditions other than just the vision.

          >

          > She is still doing well. It has been one month since her last EDAS

          for

          > bilateral MMD.

          >

          > Thanks,

          > Lora

          >

          Lora,

          My daughter, Paige, who is now almost 6 yrs old was diagnosed with

          MMD in early 2006 after suffering a stroke in December of 2005. She

          doesn't have any malformations however she has an optic pathway

          glioma(tumor in her optic nerve) but it was caused by another

          disorder called Neurofibromatosis which she was diagnosed with at

          age 6 months. I have learned alot about MMD since her diagnosis but

          I did not know that it also caused optic malformations. I wish you

          and your family all the best.Your daughter will be in our thoughts

          and prayers.

          Best of luck,

          Jennifer

          __________________________________________________________
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        • lora beasley
          Do you live in TN? We are about 3 hours from Memphis. We live in northern corner of AL. Lora To: parentingchildrenwithmoyamoya@yahoogroups.com From:
          Message 4 of 8 , Feb 19, 2008
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            Do you live in TN? We are about 3 hours from Memphis. We live in northern corner of AL.

            Lora
            To: parentingchildrenwithmoyamoya@yahoogroups.com
            From: jnokes5@...
            Date: Tue, 19 Feb 2008 20:38:09 -0800
            Subject: RE: [Parenting Children with Moyamoya] Re: Jennifer




















            Lora,

            Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the moyamoya.com message board. I believe that her daughter wasn't diagnosed until after her surgeries for MMD. Paige on the other hand was diagnosed at 6 months( long before her MMD diagnosis. I also have become really good friends with another couple whose 13 yr old daughter has both NF and MM. She too is Dr. Steinberg's patient. We were not able to get Paige's insurance to pay for her to travel out of state to see Dr.Steinberg but we were extremely lucky. Paige is a patient at St. Jude Children's Hospital in Memphis,TN for her tumor in her optic nerve and they set us up with a wonderful neurosurgeon in Memphis( Dr. Frederick Boop) who did both of Paige's bypass surgeries. Of course Steinberg was my first choice but I feel like we got the next best thing. Thank you so much for contacting me. This group and the moyamoya.com

            website have both been a huge blessing for me. Once again, I hope all goes well with your daughter. By the way, has she had any more problems since her surgery? Please feel free to contact me anytime.



            Best wishes,

            Jennifer



            Hi Jennifer,

            Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.



            Lora



            To: parentingchildrenwithmoyamoya@yahoogroups.com

            From: jnokes5@...

            Date: Tue, 19 Feb 2008 03:00:13 +0000

            Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya



            --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"



            <lorabeas@...> wrote:



            >



            > Does anyone's child have ocular malformations? My daughter has a



            visual



            > defect in each eye. She has optic nerve hypoplasia in her left eye



            > (which I have been told can be associated with MMD). In her right



            eye,



            > she has either a coloboma or morning glory (optic disc anomaly).



            > She also has other conditions other than just the vision.



            >



            > She is still doing well. It has been one month since her last EDAS



            for



            > bilateral MMD.



            >



            > Thanks,



            > Lora



            >



            Lora,



            My daughter, Paige, who is now almost 6 yrs old was diagnosed with



            MMD in early 2006 after suffering a stroke in December of 2005. She



            doesn't have any malformations however she has an optic pathway



            glioma(tumor in her optic nerve) but it was caused by another



            disorder called Neurofibromatosis which she was diagnosed with at



            age 6 months. I have learned alot about MMD since her diagnosis but



            I did not know that it also caused optic malformations. I wish you



            and your family all the best.Your daughter will be in our thoughts



            and prayers.



            Best of luck,



            Jennifer



            __________________________________________________________

            Need to know the score, the latest news, or you need your Hotmail®-get your "fix".

            http://www.msnmobilefix.com/Default.aspx



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



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
























            _________________________________________________________________
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            [Non-text portions of this message have been removed]
          • Jennifer Elrod
            Yes, we live close to Cookeville,TN , which is about a 4 1/2 hr drive from Memphis. It is east of Nashville. We actually were referred to a neurosurgeon at
            Message 5 of 8 , Feb 23, 2008
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              Yes, we live close to Cookeville,TN , which is about a 4 1/2 hr drive from Memphis. It is east of Nashville. We actually were referred to a neurosurgeon at Vanderbilt when Paige was diagnosed with MM but he was extremely rude, telling her father & myself that it was our fault she had MM because we let originally took her out of Vanderbilt to St.Jude so they would do radiation for her optic glioma. She had chemo at Vanderbilt but her body couldn't handle it and when the tumor started growing again, the doctors told us that they wanted her to start losing her vision before they would try another type of treatment. Then the neurosurgeon wanted to wait until her MM worsened before doing surgery and she had already had 1 stroke. That's when I contacted Dr.Steinberg which is why the surgeon at Vanderbilt became so angry with me and told me it was my fault.I'm sorry, you asked one question and I went on & on about Vanderbilt. As you can tell, I have had bad experiences there with
              my daughter.

              Jennifer

              lora beasley <lorabeas@...> wrote:


              Do you live in TN? We are about 3 hours from Memphis. We live in northern corner of AL.

              Lora
              To: parentingchildrenwithmoyamoya@yahoogroups.com
              From: jnokes5@...
              Date: Tue, 19 Feb 2008 20:38:09 -0800
              Subject: RE: [Parenting Children with Moyamoya] Re: Jennifer

              Lora,

              Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the moyamoya.com message board. I believe that her daughter wasn't diagnosed until after her surgeries for MMD. Paige on the other hand was diagnosed at 6 months( long before her MMD diagnosis. I also have become really good friends with another couple whose 13 yr old daughter has both NF and MM. She too is Dr. Steinberg's patient. We were not able to get Paige's insurance to pay for her to travel out of state to see Dr.Steinberg but we were extremely lucky. Paige is a patient at St. Jude Children's Hospital in Memphis,TN for her tumor in her optic nerve and they set us up with a wonderful neurosurgeon in Memphis( Dr. Frederick Boop) who did both of Paige's bypass surgeries. Of course Steinberg was my first choice but I feel like we got the next best thing. Thank you so much for contacting me. This group and the moyamoya.com

              website have both been a huge blessing for me. Once again, I hope all goes well with your daughter. By the way, has she had any more problems since her surgery? Please feel free to contact me anytime.

              Best wishes,

              Jennifer

              Hi Jennifer,

              Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.

              Lora

              To: parentingchildrenwithmoyamoya@yahoogroups.com

              From: jnokes5@...

              Date: Tue, 19 Feb 2008 03:00:13 +0000

              Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya

              --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"

              <lorabeas@...> wrote:

              >

              > Does anyone's child have ocular malformations? My daughter has a

              visual

              > defect in each eye. She has optic nerve hypoplasia in her left eye

              > (which I have been told can be associated with MMD). In her right

              eye,

              > she has either a coloboma or morning glory (optic disc anomaly).

              > She also has other conditions other than just the vision.

              >

              > She is still doing well. It has been one month since her last EDAS

              for

              > bilateral MMD.

              >

              > Thanks,

              > Lora

              >

              Lora,

              My daughter, Paige, who is now almost 6 yrs old was diagnosed with

              MMD in early 2006 after suffering a stroke in December of 2005. She

              doesn't have any malformations however she has an optic pathway

              glioma(tumor in her optic nerve) but it was caused by another

              disorder called Neurofibromatosis which she was diagnosed with at

              age 6 months. I have learned alot about MMD since her diagnosis but

              I did not know that it also caused optic malformations. I wish you

              and your family all the best.Your daughter will be in our thoughts

              and prayers.

              Best of luck,

              Jennifer

              __________________________________________________________

              Need to know the score, the latest news, or you need your Hotmail®-get your "fix".

              http://www.msnmobilefix.com/Default.aspx

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

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

              __________________________________________________________
              Need to know the score, the latest news, or you need your Hotmail®-get your "fix".
              http://www.msnmobilefix.com/Default.aspx

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






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            • lora beasley
              I am glad to hear a parents perspective about Vanderbilt. I need to find a neurosurgeon to monitor Meadow after Dr Steinberg s 6 month follow-up appt in July.
              Message 6 of 8 , Feb 24, 2008
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                I am glad to hear a parents perspective about Vanderbilt. I need to find a neurosurgeon to monitor Meadow after Dr Steinberg's 6 month follow-up appt in July. I am not sure what to do because we had kind of a devastating time at UAB. Meadow had surgery at 7 months old to repair a hole in the base of her skull, this is actually when she had her 2 strokes back to back. One on the left side, one on the right. I think that we were never given a good explanation about what happened. Even now, all I can recall the NS saying about the strokes is that there were some "abnormal vessels" at the sight where he did the surgery. I think she may have even stroked during surgery...because the first thing he said after the operation was "she may have suffered some neuro deficits". Those words still haunt me to this day. : (
                The 2 closest children's hospitals for us are 2 hours away...UAB and Vanderbilt. We are 2 hours north of Birmingham, and 2 hours south of Nashville. It is about 3 1/2 to Memphis, and 4 to Atlanta. I am not sure where to go. I want someone that has experience with basal encephalocele and moyamoya. That will be a hard one to find!
                Who do you follow up with now for neurosurgery?
                Lora


                To: parentingchildrenwithmoyamoya@yahoogroups.com
                From: jnokes5@...
                Date: Sat, 23 Feb 2008 21:38:11 -0800
                Subject: RE: [Parenting Children with Moyamoya] Re: Jennifer




















                Yes, we live close to Cookeville,TN , which is about a 4 1/2 hr drive from Memphis. It is east of Nashville. We actually were referred to a neurosurgeon at Vanderbilt when Paige was diagnosed with MM but he was extremely rude, telling her father & myself that it was our fault she had MM because we let originally took her out of Vanderbilt to St.Jude so they would do radiation for her optic glioma. She had chemo at Vanderbilt but her body couldn't handle it and when the tumor started growing again, the doctors told us that they wanted her to start losing her vision before they would try another type of treatment. Then the neurosurgeon wanted to wait until her MM worsened before doing surgery and she had already had 1 stroke. That's when I contacted Dr.Steinberg which is why the surgeon at Vanderbilt became so angry with me and told me it was my fault.I'm sorry, you asked one question and I went on & on about Vanderbilt. As you can tell, I have had bad experiences there with

                my daughter.



                Jennifer



                lora beasley <lorabeas@...> wrote:





                Do you live in TN? We are about 3 hours from Memphis. We live in northern corner of AL.



                Lora

                To: parentingchildrenwithmoyamoya@yahoogroups.com

                From: jnokes5@...

                Date: Tue, 19 Feb 2008 20:38:09 -0800

                Subject: RE: [Parenting Children with Moyamoya] Re: Jennifer



                Lora,



                Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the moyamoya.com message board. I believe that her daughter wasn't diagnosed until after her surgeries for MMD. Paige on the other hand was diagnosed at 6 months( long before her MMD diagnosis. I also have become really good friends with another couple whose 13 yr old daughter has both NF and MM. She too is Dr. Steinberg's patient. We were not able to get Paige's insurance to pay for her to travel out of state to see Dr.Steinberg but we were extremely lucky. Paige is a patient at St. Jude Children's Hospital in Memphis,TN for her tumor in her optic nerve and they set us up with a wonderful neurosurgeon in Memphis( Dr. Frederick Boop) who did both of Paige's bypass surgeries. Of course Steinberg was my first choice but I feel like we got the next best thing. Thank you so much for contacting me. This group and the moyamoya.com



                website have both been a huge blessing for me. Once again, I hope all goes well with your daughter. By the way, has she had any more problems since her surgery? Please feel free to contact me anytime.



                Best wishes,



                Jennifer



                Hi Jennifer,



                Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.



                Lora



                To: parentingchildrenwithmoyamoya@yahoogroups.com



                From: jnokes5@...



                Date: Tue, 19 Feb 2008 03:00:13 +0000



                Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya



                --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"



                <lorabeas@...> wrote:



                >



                > Does anyone's child have ocular malformations? My daughter has a



                visual



                > defect in each eye. She has optic nerve hypoplasia in her left eye



                > (which I have been told can be associated with MMD). In her right



                eye,



                > she has either a coloboma or morning glory (optic disc anomaly).



                > She also has other conditions other than just the vision.



                >



                > She is still doing well. It has been one month since her last EDAS



                for



                > bilateral MMD.



                >



                > Thanks,



                > Lora



                >



                Lora,



                My daughter, Paige, who is now almost 6 yrs old was diagnosed with



                MMD in early 2006 after suffering a stroke in December of 2005. She



                doesn't have any malformations however she has an optic pathway



                glioma(tumor in her optic nerve) but it was caused by another



                disorder called Neurofibromatosis which she was diagnosed with at



                age 6 months. I have learned alot about MMD since her diagnosis but



                I did not know that it also caused optic malformations. I wish you



                and your family all the best.Your daughter will be in our thoughts



                and prayers.



                Best of luck,



                Jennifer



                __________________________________________________________



                Need to know the score, the latest news, or you need your Hotmail®-get your "fix".



                http://www.msnmobilefix.com/Default.aspx



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



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



                __________________________________________________________

                Need to know the score, the latest news, or you need your Hotmail®-get your "fix".

                http://www.msnmobilefix.com/Default.aspx



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



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