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Thread: 18 Year Old Son C2 Vent Dependent

  1. #11
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    [quote=ChuckFoss]I recently spoke with Dr. John McDonald (Kennedy-Kreiger) and he strongly suggested I avoid Baclofen.
    Is your son still on a vent? I was, I'm a C2-C3. but now use phrenic nerve stimulators. Let me know if you want more info.


    Chuck,

    Ben was at KKI last summer and you look very familiar. Ben had the diaphragmatic pacer implanted last December at the Cleveland Clinic. Is the phrenic nerve stimulator the same and how are you doing with it.

  2. #12
    Im missing something here. The doc took him off oral baclofen, now major tone in muscles, and they dont go back on orals, but suggest a pump???What the heck is the deal here??Why not go back to the oral baclofen, and see if his tone will calm down? Please set me straight with this...John

  3. #13
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    [quote=SCI-Nurse]You might see if he is a candidate for the neurorcovery network program for walking. I know it has proven very helpful with ASIA D and some ASIA C. These are the facilities you can choose from. An application is needed. Did they mention it to him when he was at Shepherd???
    • <LI class="">Frazier Rehab Institute, Louisville, Kentucky

      Funny, we just made a trip to Frazier to check out the neurorecovery program there. Beautiful facility, quite up to date. After the pump on June 4th, we are heading back to Kennedy for inpatient rehab. We want to mainly focus on arms, since they keep saying he should regain function, if we can break through the tone with a little help from the pump, then, hopefully a little later to Louisville. The locomotion and aqua-therapy looks really,really good. They also believe that he may be able to at least walk in the pool and maybe further later. Who knows -- Thanks

  4. #14
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    Quote Originally Posted by graybeard
    Im missing something here. The doc took him off oral baclofen, now major tone in muscles, and they dont go back on orals, but suggest a pump???What the heck is the deal here??Why not go back to the oral baclofen, and see if his tone will calm down? Please set me straight with this...John
    I am just learning all this stuff but, oral baclofen has to go through the bloodstream and organs first and by the time it reached the spinal cord, where it is needed, not enough is left. The take orally enough to help, you would probably be unconscious. The pump delivers about 1/500th of the oral dose and it drips directly into the spinal fluid. Ben is on dantrolene, sinemet and zanaflex plus, 5x a week therapy and he can not progress because of the tone. This from what we are told, is the next step, if you'll forgive the expression.

  5. #15
    Quote Originally Posted by jmt823
    Ben was at KKI last summer and you look very familiar. Ben had the diaphragmatic pacer implanted last December at the Cleveland Clinic. Is the phrenic nerve stimulator the same and how are you doing with it.
    I hope I am not being too personal here. I apologize if I am. How is your son doing with the diaphragm pacer? Is he able to be off the vent 24/7?

    I am having an EMG done soon to see if I qualify for the clinic trial that recently started in Vancouver. I realize I am highjacking this thread very briefly (sorry). I just don't get the chance to hear from many people, or their families, who have had the procedure done.

  6. #16
    Does he have Parkinson's too? Why is he on Sinemet? Sinemet is not a drug for SCI spasticity; it is a drug for Parkinson's disease.

    Dantrolene is very rarely used anymore due to its liver toxicity and its high risk of causing weakness in normal muscles. This would probably hold him back more than oral baclofen. I know of few baclofen pump programs that will consider anyone sooner than 12 months post-SCI.

    Is he standing daily? Proning daily? Getting daily ROM? Have they tried him on Valium? Added Clonodine to his other anti-spasticity meds?

    (KLD)

  7. #17
    Exactly where I was heading Sci-Nurse. I too got off the Dantrium (dantrolene) because I read of its liver toxicity. I gained muscle strength from being off of it. But, also, I went a week once without my oral baclofen, and had tremendous amount of tone because of it. At the time, I was still on the zanaflex and it did zip for my tone. That got my attention to rid myself of the Zanaflex. I am t 7/8 inc. So, certainly my level is way lower than what your son is struggling with, but I would urge you to reconsider the oral medication first before the surgery. I would guess there will be an improvement to where he could do his therapies...John

  8. #18
    Many centers, including Shepherd are doing baclofen implant before patients go home from inpatient rehab.

    Graybeard, there seems to be growing belief that oral baclophen is not very effective in reducing spasticity and the best results are seen in the pump. KKI uses the approach that exercise, etc can assist in breaking down the tone and decreasing the patients need for the pump. The centers in the neurorecovery network follow this same thought process.
    Every day I wake up is a good one

  9. #19
    I am no expert, but I believe and many others in the spinal cord community, that anti-spasticity medicines actually inhibit recovery. I am not in your situation, so there is no way I can understand the severity of the situation, but I would think you should exhaust all other options before surgically implanting the baclofen pump.

    You'll find all kinds of definitions for what spasms are, but it's possible that spasms are simply nervous signals gone haywire. Appropriate stimulation such as gait locomotor training could turn his spasticity into real controlled movement.

    In my opinion, the neuro recovery centers sound like a good idea.

  10. #20
    Thanks for the explanation C-Cake. I am jus very leery of surgery. My experience has been that exercise in itself will not breakdown the tone. But, if it does for most others,than that is a huge plus for them. I have difficulty in accepting the idea of planting a hockey puck in my gut. I almost went for it while at Mt Vernon hospital, thank God I didnt. I am hopeful that oral meds, while yes are not the best for the body, nor efficient, would be given the opportunity to work over another surgery. I do agree with Colin that spaz meds do interfere with recovery. I have been slowly weening myself off of them as I progress in my recovery. I am not sure if I will ever be rid of them completely, but less is better. Take care, John

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