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tethered chord - Reaching out!!!

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  • Jaime
    Hi everyone, I haven t asked a question in a long time...a very long time, but I watch and answer from time to time. My son Dylan is 10-years-old...He has
    Message 1 of 5 , Aug 6, 2009
    • 0 Attachment
      Hi everyone,

      I haven't asked a question in a long time...a very long time, but I watch and answer from time to time. My son Dylan is 10-years-old...He has Neurogenic Arthrogryposis, a mutated form of SMA. He doesn't have the SMN deletion, but fits the "clinical and EMG/Nerve Conduction study" portion of SMA. He doesn't fit the typical profile of AMC, but he is contracted and therefore diagnosed with AMC.

      Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs (hips, knees, ankles, toes), neck (torticollis), back (scoliosis, lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but is definitely not your typical Amyoplasia. Dylan has almost no voluntary movement, other than his head movement (which is awesome). He drives his powerchair with his chin, completely accesses the Internet on his own (head and toe), plays PS2 by himself (when he wants to with various switches), and does pretty much whatever he wants to with adaptive equipment (just ask and I will share pictures or ideas).

      No matter what it is, we have tried it, adapted it, failed it, succeeded it...been there, done that, and have a whole bunch of t-shirts (AMC and MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought it, owned it, loaned it, and might even have it in our garage if Dylan can't use it!!!

      Dylan has gone to A.I. DuPont Hospital for Children since he was 18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee, and Marnie when we lived in Illinois (now live in NJ), and truly believe it saved Dylan's life!!!

      Here we are today, almost a decade later. Dylan is doing awesome!! Living, thriving, doing!!........At this point, you (I, ME) wonder (as a parent), what more is there??? My child is completely incapable, but doing so much more than any doctor said he would...For so many years, I have just been so completelt happy Dylan is alive and doing as much as he is!!!

      SO... the reason for my email...Of course, I have a problem...And I come to you for advise....

      I found out by chance (from Dylan Urologist), that Dylan has a Tethered Spinal Cord and I have no idea what to do. He said we need to see a Neurosurgeon ASAP. (I have yet to hear from Dr. Jay). I am desperately asking anyone who can help to tell me what this means, what I have to do, what the recovery is like, what surgeon to use (keep in mind I live in NJ), and anything else that might be helpful in this situation.

      I suddenly went from a mom who has "been there, done that" to one who has no idea, no direction, and no help. I am completely lost in this situation and hope there is someone out there who can help!!


      That being said...Even if there is no one out there to assist us...if we could be of any assistance to anyone who has a VERY special needs child, please feel free to contact me.....Thank you for your assistance.

      PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)

      Jaime Brown
      (mom to Dylan - 10 - years - old)

      [Non-text portions of this message have been removed]
    • Patty Clarke
      HI Jaime, I do not know a lot about tethered cords but I did have surgery for my scoliosis. Is this something in Dylan s future? If so my understanding is
      Message 2 of 5 , Aug 6, 2009
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        HI Jaime, I do not know a lot about tethered cords but I did have surgery
        for my scoliosis. Is this something in Dylan's future? If so my
        understanding is that if there is a tethered cord it has to be fixed first
        before the spinal fusion for the scoliosis. My curvature was 120 degrees,
        yes you read that right, when I was 14 when I had the surgery (now 49) with
        quite involved AMC however I am independent but I do not walk. After my
        spinal fusion I grew 6 inches, it was quite exciting. Having the surgery
        gave me a great quality of life otherwise I would have been unable to do
        much because my heart and lungs were so compromised. Get the referral to
        see the surgeon and talk about the options..I think the tether chord surgery
        is less involved than a the spine fusion...in terms of recovery not sure of
        the risks though...keep us posted!!



        The picture did not come through I would love to see pictures of this
        amazing son of yours!!



        Patty.







        From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
        Of Jaime
        Sent: August-06-09 12:35 AM
        To: avenues2@yahoogroups.com
        Cc: jbrown@...
        Subject: [avenues2] tethered chord - Reaching out!!!





        Hi everyone,

        I haven't asked a question in a long time...a very long time, but I watch
        and answer from time to time. My son Dylan is 10-years-old...He has
        Neurogenic Arthrogryposis, a mutated form of SMA. He doesn't have the SMN
        deletion, but fits the "clinical and EMG/Nerve Conduction study" portion of
        SMA. He doesn't fit the typical profile of AMC, but he is contracted and
        therefore diagnosed with AMC.

        Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs
        (hips, knees, ankles, toes), neck (torticollis), back (scoliosis,
        lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but
        is definitely not your typical Amyoplasia. Dylan has almost no voluntary
        movement, other than his head movement (which is awesome). He drives his
        powerchair with his chin, completely accesses the Internet on his own (head
        and toe), plays PS2 by himself (when he wants to with various switches), and
        does pretty much whatever he wants to with adaptive equipment (just ask and
        I will share pictures or ideas).

        No matter what it is, we have tried it, adapted it, failed it, succeeded
        it...been there, done that, and have a whole bunch of t-shirts (AMC and
        MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought
        it, owned it, loaned it, and might even have it in our garage if Dylan can't
        use it!!!

        Dylan has gone to A.I. DuPont Hospital for Children since he was
        18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee,
        and Marnie when we lived in Illinois (now live in NJ), and truly believe it
        saved Dylan's life!!!

        Here we are today, almost a decade later. Dylan is doing awesome!! Living,
        thriving, doing!!........At this point, you (I, ME) wonder (as a parent),
        what more is there??? My child is completely incapable, but doing so much
        more than any doctor said he would...For so many years, I have just been so
        completelt happy Dylan is alive and doing as much as he is!!!

        SO... the reason for my email...Of course, I have a problem...And I come to
        you for advise....

        I found out by chance (from Dylan Urologist), that Dylan has a Tethered
        Spinal Cord and I have no idea what to do. He said we need to see a
        Neurosurgeon ASAP. (I have yet to hear from Dr. Jay). I am desperately
        asking anyone who can help to tell me what this means, what I have to do,
        what the recovery is like, what surgeon to use (keep in mind I live in NJ),
        and anything else that might be helpful in this situation.

        I suddenly went from a mom who has "been there, done that" to one who has no
        idea, no direction, and no help. I am completely lost in this situation and
        hope there is someone out there who can help!!

        That being said...Even if there is no one out there to assist us...if we
        could be of any assistance to anyone who has a VERY special needs child,
        please feel free to contact me.....Thank you for your assistance.

        PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)

        Jaime Brown
        (mom to Dylan - 10 - years - old)

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





        [Non-text portions of this message have been removed]
      • lalabonita
        Jamie There is an active discussion on tethered cords at amcsupport. I encourage you to log in and post your question there. http://www.amcsupport.org/forum
        Message 3 of 5 , Aug 27, 2009
        • 0 Attachment
          Jamie

          There is an active discussion on tethered cords at amcsupport. I encourage you to log in and post your question there.

          http://www.amcsupport.org/forum

          Link to current discussion on topic
          http://www.amcsupport.org/forum/viewtopic.php?f=4&t=6933&p=66194#p66194

          Hope someone will be able to help you!!





          --- In avenues2@yahoogroups.com, "Jaime" <jddncb@...> wrote:
          >
          > Hi everyone,
          >
          > I haven't asked a question in a long time...a very long time, but I watch and answer from time to time. My son Dylan is 10-years-old...He has Neurogenic Arthrogryposis, a mutated form of SMA. He doesn't have the SMN deletion, but fits the "clinical and EMG/Nerve Conduction study" portion of SMA. He doesn't fit the typical profile of AMC, but he is contracted and therefore diagnosed with AMC.
          >
          > Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs (hips, knees, ankles, toes), neck (torticollis), back (scoliosis, lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but is definitely not your typical Amyoplasia. Dylan has almost no voluntary movement, other than his head movement (which is awesome). He drives his powerchair with his chin, completely accesses the Internet on his own (head and toe), plays PS2 by himself (when he wants to with various switches), and does pretty much whatever he wants to with adaptive equipment (just ask and I will share pictures or ideas).
          >
          > No matter what it is, we have tried it, adapted it, failed it, succeeded it...been there, done that, and have a whole bunch of t-shirts (AMC and MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought it, owned it, loaned it, and might even have it in our garage if Dylan can't use it!!!
          >
          > Dylan has gone to A.I. DuPont Hospital for Children since he was 18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee, and Marnie when we lived in Illinois (now live in NJ), and truly believe it saved Dylan's life!!!
          >
          > Here we are today, almost a decade later. Dylan is doing awesome!! Living, thriving, doing!!........At this point, you (I, ME) wonder (as a parent), what more is there??? My child is completely incapable, but doing so much more than any doctor said he would...For so many years, I have just been so completelt happy Dylan is alive and doing as much as he is!!!
          >
          > SO... the reason for my email...Of course, I have a problem...And I come to you for advise....
          >
          > I found out by chance (from Dylan Urologist), that Dylan has a Tethered Spinal Cord and I have no idea what to do. He said we need to see a Neurosurgeon ASAP. (I have yet to hear from Dr. Jay). I am desperately asking anyone who can help to tell me what this means, what I have to do, what the recovery is like, what surgeon to use (keep in mind I live in NJ), and anything else that might be helpful in this situation.
          >
          > I suddenly went from a mom who has "been there, done that" to one who has no idea, no direction, and no help. I am completely lost in this situation and hope there is someone out there who can help!!
          >
          >
          > That being said...Even if there is no one out there to assist us...if we could be of any assistance to anyone who has a VERY special needs child, please feel free to contact me.....Thank you for your assistance.
          >
          > PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)
          >
          > Jaime Brown
          > (mom to Dylan - 10 - years - old)
          >
          > [Non-text portions of this message have been removed]
          >
        • Theresa Lucas
          Hey Jamie, it was so nice to FINALLY meet you in Philly!! Wish I had more time to talk! :) Hope to see you on the boards! ~Theresa Lucas
          Message 4 of 5 , Aug 27, 2009
          • 0 Attachment
            Hey Jamie,

            it was so nice to FINALLY meet you in Philly!!

            Wish I had more time to talk! :)



            Hope to see you on the boards!





            ~Theresa Lucas
            http://www.theresalucas.com
            Arthrogryposis Multiplex Congenita Support, Inc. ~ President
            http://www.amcsupport.org
            Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


            -----Original Message-----
            From: lalabonita <lalabonita@...>
            To: avenues2@yahoogroups.com
            Sent: Thu, Aug 27, 2009 9:26 am
            Subject: [avenues2] Re: tethered chord - Reaching out!!!






            Jamie

            There is an active discussion on tethered cords at amcsupport. I encourage you to log in and post your question there.

            http://www.amcsupport.org/forum

            Link to current discussion on topic
            http://www.amcsupport.org/forum/viewtopic.php?f=4&t=6933&p=66194#p66194

            Hope someone will be able to help you!!

            --- In avenues2@yahoogroups.com, "Jaime" <jddncb@...> wrote:
            >
            > Hi everyone,
            >
            > I haven't asked a question in a long time...a very long time, but I watch and answer from time to time. My son Dylan is 10-years-old...He has Neurogenic Arthrogryposis, a mutated form of SMA. He doesn't have the SMN deletion, but fits the "clinical and EMG/Nerve Conduction study" portion of SMA. He doesn't fit the typical profile of AMC, but he is contracted and therefore diagnosed with AMC.
            >
            > Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs (hips, knees, ankles, toes), neck (torticollis), back (scoliosis, lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but is definitely not your typical Amyoplasia. Dylan has almost no voluntary movement, other than his head movement (which is awesome). He drives his powerchair with his chin, completely accesses the Internet on his own (head and toe), plays PS2 by himself (when he wants to with various switches), and does pretty much whatever he wants to with adaptive equipment (just ask and I will share pictures or ideas).
            >
            > No matter what it is, we have tried it, adapted it, failed it, succeeded it...been there, done that, and have a whole bunch of t-shirts (AMC and MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought it, owned it, loaned it, and might even have it in our garage if Dylan can't use it!!!
            >
            > Dylan has gone to A.I. DuPont Hospital for Children since he was 18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee, and Marnie when we lived in Illinois (now live in NJ), and truly believe it saved Dylan's life!!!
            >
            > Here we are today, almost a decade later. Dylan is doing awesome!! Living, thriving, doing!!........At this point, you (I, ME) wonder (as a parent), what more is there??? My child is completely incapable, but doing so much more than any doctor said he would...For so many years, I have just been so completelt happy Dylan is alive and doing as much as he is!!!
            >
            > SO... the reason for my email...Of course, I have a problem...And I come to you for advise....
            >
            > I found out by chance (from Dylan Urologist), that Dylan has a Tethered Spinal Cord and I have no idea what to do. He said we need to see a Neurosurgeon ASAP. (I have yet to hear from Dr. Jay). I am desperately asking anyone who can help to tell me what this means, what I have to do, what the recovery is like, what surgeon to use (keep in mind I live in NJ), and anything else that might be helpful in this situation.
            >
            > I suddenly went from a mom who has "been there, done that" to one who has no idea, no direction, and no help. I am completely lost in this situation and hope there is someone out there who can help!!
            >
            >
            > That being said...Even if there is no one out there to assist us...if we could be of any assistance to anyone who has a VERY special needs child, please feel free to contact me.....Thank you for your assistance.
            >
            > PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)
            >
            > Jaime Brown
            > (mom to Dylan - 10 - years - old)
            >
            > [Non-text portions of this message have been removed]
            >








            [Non-text portions of this message have been removed]
          • Darrin and Jaime Brown
            It was great to finally meet you also!!! I can t wait to see you again!! Jaime To: avenues2@yahoogroups.com From: TERRY2745@AOL.COM Date: Thu, 27 Aug 2009
            Message 5 of 5 , Sep 1, 2009
            • 0 Attachment
              It was great to finally meet you also!!! I can't wait to see you again!!



              Jaime





              To: avenues2@yahoogroups.com
              From: TERRY2745@...
              Date: Thu, 27 Aug 2009 09:33:07 -0400
              Subject: Re: [avenues2] Re: tethered chord - Reaching out!!!






              Hey Jamie,

              it was so nice to FINALLY meet you in Philly!!

              Wish I had more time to talk! :)

              Hope to see you on the boards!

              ~Theresa Lucas
              http://www.theresalucas.com
              Arthrogryposis Multiplex Congenita Support, Inc. ~ President
              http://www.amcsupport.org
              Art Association of Madison County, Inc. ~ Student Exhibition Coordinator

              -----Original Message-----
              From: lalabonita <lalabonita@...>
              To: avenues2@yahoogroups.com
              Sent: Thu, Aug 27, 2009 9:26 am
              Subject: [avenues2] Re: tethered chord - Reaching out!!!

              Jamie

              There is an active discussion on tethered cords at amcsupport. I encourage you to log in and post your question there.

              http://www.amcsupport.org/forum

              Link to current discussion on topic
              http://www.amcsupport.org/forum/viewtopic.php?f=4&t=6933&p=66194#p66194

              Hope someone will be able to help you!!

              --- In avenues2@yahoogroups.com, "Jaime" <jddncb@...> wrote:
              >
              > Hi everyone,
              >
              > I haven't asked a question in a long time...a very long time, but I watch and answer from time to time. My son Dylan is 10-years-old...He has Neurogenic Arthrogryposis, a mutated form of SMA. He doesn't have the SMN deletion, but fits the "clinical and EMG/Nerve Conduction study" portion of SMA. He doesn't fit the typical profile of AMC, but he is contracted and therefore diagnosed with AMC.
              >
              > Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs (hips, knees, ankles, toes), neck (torticollis), back (scoliosis, lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but is definitely not your typical Amyoplasia. Dylan has almost no voluntary movement, other than his head movement (which is awesome). He drives his powerchair with his chin, completely accesses the Internet on his own (head and toe), plays PS2 by himself (when he wants to with various switches), and does pretty much whatever he wants to with adaptive equipment (just ask and I will share pictures or ideas).
              >
              > No matter what it is, we have tried it, adapted it, failed it, succeeded it...been there, done that, and have a whole bunch of t-shirts (AMC and MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought it, owned it, loaned it, and might even have it in our garage if Dylan can't use it!!!
              >
              > Dylan has gone to A.I. DuPont Hospital for Children since he was 18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee, and Marnie when we lived in Illinois (now live in NJ), and truly believe it saved Dylan's life!!!
              >
              > Here we are today, almost a decade later. Dylan is doing awesome!! Living, thriving, doing!!........At this point, you (I, ME) wonder (as a parent), what more is there??? My child is completely incapable, but doing so much more than any doctor said he would...For so many years, I have just been so completelt happy Dylan is alive and doing as much as he is!!!
              >
              > SO... the reason for my email...Of course, I have a problem...And I come to you for advise....
              >
              > I found out by chance (from Dylan Urologist), that Dylan has a Tethered Spinal Cord and I have no idea what to do. He said we need to see a Neurosurgeon ASAP. (I have yet to hear from Dr. Jay). I am desperately asking anyone who can help to tell me what this means, what I have to do, what the recovery is like, what surgeon to use (keep in mind I live in NJ), and anything else that might be helpful in this situation.
              >
              > I suddenly went from a mom who has "been there, done that" to one who has no idea, no direction, and no help. I am completely lost in this situation and hope there is someone out there who can help!!
              >
              >
              > That being said...Even if there is no one out there to assist us...if we could be of any assistance to anyone who has a VERY special needs child, please feel free to contact me.....Thank you for your assistance.
              >
              > PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)
              >
              > Jaime Brown
              > (mom to Dylan - 10 - years - old)
              >
              > [Non-text portions of this message have been removed]
              >

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









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