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Thread: For cass, the good doc and others....

  1. #1

    For cass, the good doc and others....

    I have been having up to 10 injections of botox every 2 months into the neck muscles as a preparation for surgery since the beginning of the year, each time upping the dosages they cannt say when the dosages will be up to the level required for surgery. I have been told that they will keep upping the dosages until the muscles stop dancing. I have been warned of the possibility of side effects such as loosing the ability to lift my head as well as being unable to swallow or speak, they go very close to the voice box and throat so far however no noticable effects on muscle control. I have been looking for alternatives to this method in the off chances of it failing, but as yet nothing. Only other thing the doctor suggests is inplanting an ellectrode into my brain ....they doubt whether this would work. Hoping the good doctor might be able to come up with something we haven't thought of.

    Have been put on slow release patches of buprenorphine for pain, I still have pain but its not as bad.

  2. #2
    I am very confused. Why are you having the botox injections? What type of surgery?
    CKF

  3. #3
    ABU, Sorry it seems like you're in so much pain; I hadn't seen you post in a while and was wondering what happened to you ....
    Daniel

  4. #4
    In answer to the nurse. I have choreo- athetosis and dystonic forms of cerebral palsy, I also have a very partial break of the neck which put me in the chair. They decided that the arthritis is worse than the break and have said that I wont gain much movement back if they surgically attempt to fix the break.

    I have arthritis of the spine in the area of the neck and a bowing effect of the cord which is slowly being crushed between the bones. Hence the pain and the patches.

    The surgery they're planning is to poke the cord back then seal the hole with a bone graft from my hip and then weild the woirst 4 vertebra together. But they have to keep me still enough to heal. Due to the nature of my cerebral palsy, I cann't be conscious and still at the same time and the muscles of the neck are very very very strong due to constant contractions. They will keep me in a semi comatosed state for the first week. The botox in the dosages they are intending to build up to will hopefully neutralize the CP in the neck to permit healing.

    I have been known to take 40-50 milligrams of valium in one dose and still be moving.

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