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losing mobility, can barely move. please help

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  • losing mobility, can barely move. please help

    Hey all. Im a C7 incomplete for four years, I have pretty good sensation, no function in my hands. Use tenodesis to grasp. Im losing mobility due to worsening clonis(?), spasms, and stiffness. When I lay down I'm immediately stiff as a board, when I reach for things, my hands shake too much to grab at stuff.
    I use the FES bike pretty regularly and take 120 mg of baclofen per day. Which already makes me really drowsy. Dr. wants me to do baclofen pump, but I really don't want to.
    My issue being aesthetical. Don't want a big bump on my side.
    Are there any suggestions? Pleasssse
    And anyone can tell me about their experiences with one.
    This loss of mobility is severely restricting my daily life. Please help

  • #2
    Have you been checked for a possible syrinx?

    I would seriously recommend that you get evaluated for a baclofen pump; put aside your vanity (it really doesn't show that much) in favor of function. You don't have to proceed with the pump if the test dose does not help.

    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.


    • #3
      I have a syrinx at the injury site, but it has already been operated on, and checkup MRI showed it was stable. . I was kinda hoping that there was something more than doing the bike and stretching


      • #4
        I have a baclofen pump. I'm on my 3rd one and if it wasn't for this I'd probably be dead or something. My spasms used to be so bad that if anyone touched my legs they would kick straight out or if I got the chance to push and then move my arms too much I would get a massive spasm that would throw me over the side of my chair. At one point they got so bad it would stiffen my backup and I would slide down out of my chair. It was ridiculous. I started a FAQ About it and the benefits it gives. They really don't stick out that much and really, do you mind something sticking out maybe half an inch to an inch or having massive spasms whenever you do certain things? You can also get put in it. I also have bibucaine to help bring down my central pain. There are all sorts of different ways it can deliver medicine to you based on what time you need it, if you needed all day or if you need certain amounts at different parts of the day. I recommend getting a trial shot to check out the difference. You'll love it.
        C-5/6, 7-9-2000
        Scottsdale, AZ

        Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.


        • #5
          I have a baclofen pump and it doesn't look bad at all. I think your decision is easy, live a quality life with less spasms and get a pump. Who cares about aesthetics? You can only tell someone has one if your shirt is off. Just tell people you swallowed a hockey puck and make it a joke.