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Selective Dorsal Rhizotomy

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  • Colin P.
    Hello Everyone: I have not posted for some time, mostly becuase of my overflowing schedule. I hope that everyone is relatively well! My daughter Marissa is now
    Message 1 of 4 , Jul 20, 2003
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      Hello Everyone:
      I have not posted for some time, mostly becuase of my overflowing
      schedule. I hope that everyone is relatively well!
      My daughter Marissa is now 5. She has CP and hearing loss due to
      Congenital CMV. Her CP is Spastic unilateral, and she could be
      classified as a stage 2 (ambulatory w/o assistance). She wears an AFO
      to deal with toe-walking and the CP also affects her fine-motor
      (hand) and oral-motor (speech).
      Lately, her toe-walking has gotten worse to the point that without
      her AFO she will roll her foot completely over (the tops of her toes
      will touch the ground). She has had 2 Botox injections with mild
      success, however her orthropedic surgeon has said that due to her
      tolerance build-up they will probably only be able to do one more.
      She does not show any long-term improvements from the Botox.
      Heel cord surgery has been discussed, however I understand that it
      will permanently weaken the muscle and can be a short term solution
      to a larger problem.
      I recently learned about Dorsal Rhizotomy for kids with spastic CP
      and would like to know if anyone here has had it done, and what are
      their throughts on it? I am commited to making informed decisions for
      Marissa and would appreciate any thoughts anyone has on this.
      Thank You,
      Colin P.
    • tjsmom06
      Hi my name is Donna and and my son has Diplega CP and he had the Dorsal Rhysotomy surgery Oct 2002. Before the surgery his leg s crossed so bad he couldn t
      Message 2 of 4 , Jul 22, 2003
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        Hi my name is Donna and and my son has Diplega CP and he had the
        Dorsal Rhysotomy surgery Oct 2002. Before the surgery his leg's
        crossed so bad he couldn't walk because he couldn't keep them
        seperated. After the surgery and lot's of therapy he took his first
        step with a walker in Dec. It was a miracle surgery for us and the
        recovery for him went well also. If you have any question's about the
        procedure or recovery feel free to email me.
      • Brian Sell
        Hi Donna, How old was your son when he had the surgery? Did they use a gait analysis test before the surgery? I have been researching this for a long time to
        Message 3 of 4 , Jul 23, 2003
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          Hi Donna,
          How old was your son when he had the surgery? Did they use a gait
          analysis test before the surgery? I have been researching this for a
          long time to see if it right for my son who will be four next month.
          They feel he is a little young and would not make it through the
          intensive therapy afterward. He had a hard time with the gait analysis
          because they stick marble-like balls in places on his feet and legs,
          they are sensor type things hooked up to a computer which computes
          muscle use vs.. tone while he is walking with his walker. They use it
          as part of the process of determining a good candidate. But he has a
          problem with sensory things and does not like things stuck on him sooo
          least said he did not want to cooperate.

          Did you try Botox before the surgery? If you did, how does that compare
          (if it does in any little way...I know the procedures are so
          different)... to the effect the Botox reduced the tone?

          Thanks for sharing information.
          Nicole
          mom to twin boys one with CP and Cochlear implant user
          -----Original Message-----
          From: tjsmom06 [mailto:dmguereca@...]
          Sent: Tuesday, July 22, 2003 10:20 PM
          To: cerebralpalsyclub@yahoogroups.com
          Subject: [CEREBRAL PALSY CLUB] Re: Selective Dorsal Rhizotomy



          Hi my name is Donna and and my son has Diplega CP and he had the
          Dorsal Rhysotomy surgery Oct 2002. Before the surgery his leg's
          crossed so bad he couldn't walk because he couldn't keep them
          seperated. After the surgery and lot's of therapy he took his first
          step with a walker in Dec. It was a miracle surgery for us and the
          recovery for him went well also. If you have any question's about the
          procedure or recovery feel free to email me.



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        • tjsmom06
          TJ was 5 when he had the sugery and we wasn t quite sure how he would do with the intensive therapy but he did great. His therapist is great and they work well
          Message 4 of 4 , Jul 23, 2003
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            TJ was 5 when he had the sugery and we wasn't quite sure how he would
            do with the intensive therapy but he did great. His therapist is
            great and they work well together and TJ love's to please her so he
            work's very hard. We did try the botox injection's but his spactisity
            was so bad that it didn't work well at all. I've not heard of the
            gait analysis so no they didn't do that on him. Our physiatrist(sp?)
            recomended the Dorsal Rhyzotomy for him when he was around 2 because
            he is so strong upper body. Without the procedure he would have never
            walked. I know some doctor's are extremely picky on what paitent's
            they will perform this surgery on. We live in GA and we alway's went
            to Atlanta for his visit's but all they wanted to do for him was the
            baclofen pump but they also said that chance's were it wouldn't relax
            his muscle's enough to walk. I didn't want that pump in his body so I
            went back to Augusta GA where he had the botox done and they
            evaluated him for the Dorsal Rhysotomy. My husband and I don't regret
            our decission to have it done at all. I've met other parent's of
            children who went through the same surgery. The one's that were
            walking with assistance before the surgery walked without assistance
            after the surgery. Yes the therapy afterward's is hard and I don't
            think TJ would have done well with that at 4 because he hated therapy
            then. He had the surgery in Oct and turned 6 in march and I think
            that was a great age. Hope I answered all your question's. Feel free
            to aske more if you have more question's.
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