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18 Year Old Son C2 Vent Dependent

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    #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)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #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

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        #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

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          #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.
          www.ballincolin.spaces.live.com
          www.youtube.com/colinsodyssey

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            #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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              #21
              The potential for Baclofen (and other medications) inhibiting the recovery and any return of function is the basis along with the walking in a harness, exercise etc...For incompletes anyway.
              There is still so much we don't know and each individual and injury is different.
              Unfortunately I have seen the Bacofen pump put in and the doctors never told the patient or there caregive to exercise, standing frame, weight on eg, passive range of motion, exercise bicycle or any other type of exercise. Just boom-straight to the spasticity management-botox, pump etc...


              CWO
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                #22
                Originally posted by orangejello
                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.
                Orangejello-
                He is doing very well with the pacer and yes he can be off the vent 24/7. Right now, he is probably at 24/3. Physically, his diaphragm is strong enough and capable of being on the pacer 24/7 but, emotionally he is not there yet. What does EMG stand for? I am assuming that is the phrenic nerve test. If for some reason your test shows negative (Ben's did), go to the direct source, Dr. Raymond Onders at the Cleveland Clinic. Our first test in Baltimore showed no contraction on the left, when we got to Cleveland, his left was probably stronger than the right. We have been told that many people fail to qualify more than likely because of the person giving the test. The pacer is a wonderful thing, it can give you your sense of smell back, your lungs stay alot healthier, less suctioning, diaphragm does not atrophy and most important to Ben (he says) no more yanking on the tubes! Feel free to ask us anything, we are more than happy to give you what info we can. jmt823

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                  #23
                  [quote=SCI-Nurse]The potential for Baclofen (and other medications) inhibiting the recovery and any return of function is the basis along with the walking in a harness, exercise etc...For incompletes anyway.
                  There is still so much we don't know and each individual and injury is different.
                  Unfortunately I have seen the Bacofen pump put in and the doctors never told the patient or there caregive to exercise, standing frame, weight on eg, passive range of motion, exercise bicycle or any other type of exercise. Just boom-straight to the spasticity management-botox, pump etc...


                  We have the FES bike and the stander/glider here at home and he is lucky in that he gets PT/OT 4x a week. I recently had the liver function tests done to check the levels and he is still in the normal range. No one had ever said anything like Dantrolene could inhibit muscle strength. He is on Sinemet because apparently his dr before thought he had dystonia? Recently, that has been pretty much ruled out but, the doctor doing the implant doesn't want to drastrically change meds until after the surgery. Does that sound right?

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                    #24
                    Ernesto Fonseca

                    As you said... sorry to get something new going here... but I was asked about Fonseca?? I have never spoken to him.. but would like to. Anybody hear know how to get in touch? Sorry again. Mike
                    Mike (Florida)

                    Cant we get 1 do over?

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                      #25
                      I had a pump put in when I was at Shepherd a month after my C5C6 injury due to leg spasms that couldn't be quashed with oral drugs. It was a miracle cure and I didn'tlose any of the little voluntary movement that I had. Even now, when I occassionally get increases, it has no affect on voluntary movement. Everyone I know who has one swears by em, as did all I spoke to prior to getting mine.

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                        #26
                        Thanks very much for the feedback jmt823. I definately have some questions, but I don't want to derail this thread any more than I already have. I will ask them later.

                        I am glad to hear your son is doing so well with his pacer.

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                          #27
                          Baclofen pump

                          Sorry to hear about your motocross accident. I too was injured in a race, although mine was a bicycle race in Ohio. I got caught up in another person's mistake and did a header into a parked truck. I am C3-C4 incomplete, and I have had the baclofen pump for the past eight months. The oral dosage that I was on before left me with a really dry mouth and problems with drowsiness. Initially I had a lot of problems with the pump because of spinal fluid leakage which caused me nausea for a few days and lack of appetite for a couple weeks. Once that subsided, I have had no problems. The positive is that my spasms are much, much better. My legs used to spasm whenever I would hit the tiniest bump, but now they are very good. The cost is ridiculous, but if your insurance will pay, I would suggest the pump if the oral medicine is not working well, but only if the oral medicine is not working well. Please e-mail me if you want more details. Good luck.

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                            #28
                            Breathing pacemaker

                            For vent dependent quads there is the Avery Biomedical Breathing Pacemaker. By using the pacemaker, you do not need to be on a ventilator.

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                              #29
                              Many people are candidates for this, but many are not. I know of many people with SCI on chronic vents who have been tested and told they are not candidates. It is at least worth exploring.

                              (KLD)
                              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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