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Thread: horrible spasticity

  1. #1

    horrible spasticity

    Since my accident back in August 2007, my spasticity has gotten worse and worse. I started taking 5mg of baclofen 2x a day. Now I am taking 80mg 3x a day and supplimenting that with 8mg of zanaflex 3x a day. Even those doses are not touching this terrible spasticity.
    My legs literally feel like they are being pulled out of my hips. My muscles get hard and are being pulled so bad it feels like they are ripping. My legs get as hard as rocks and are both as stiff boards. When I lay down in bed and this happens, I can't even break it by pulling my legs up towards me. I can't roll over either. The pain is so bad, I can't even describe it to my doctor who prescribes my medication and he doesn't have a clue how bad the pain is because nothing he's prescribed even touches the pain.
    Anyway-- here is my question: Would a baclofen pump be a good solution to this issue? I have heard some things about it, but not a lot. Please if anyone knows anything about this share your insight with me. I feel desperate because I can not live with this type of pain and spasms. It is a 10 out of 10 with regards to pain and discomfort.
    Please anything you know about this would be great!

  2. #2
    Senior Member watchthisbaby's Avatar
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    Hi I just briefly went through some of your other post, and I have alot of empathy for you. It sounds like your trying your hardest with everything. My injury was just a few weeks prior to yours. My spasms and neuro pain have subsided a lot from what they use to be. I've never had to have a pump put in, but I know others like theirs. I'm sorry your going through this much pain, but wanted to share just a couple things I've experienced. If I'm depressed, sick, stressed, not sleeping, or having b/b issues my spasms and neuro pain go through the roof. Laying down or waking up in the am is always the worst. I also just wanted clarification about when you said you can't roll over, is someone helping to roll you at night? That's really important to avoid skin breakdown. If it hasn't been mentioned sleep on your stomach, it helps with spasms. hang in there I'm sure someone with a pump will be along shortly
    "We're one but we're not the same. We get to carry each other" U2

  3. #3
    Senior Member darrel's Avatar
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    I had my accident back in Jan 2006, I got my pump put in back in Oct. 2007. I myself say if the test shows that it would help, I would go for it.
    Simon on Apperalyzed has some wonderful information on the pump(some horor stories also) but the pros far out wiegh the cons.
    If I had to chose the spasms over the pump, I would chose the pump all over again. There are several ppl on here that have had the pump put in and they were a big help to me on my decision.

  4. #4
    Thank you both. I am starting to feel like I want to get it, just still am not sure about it. I appreciate your responses.

  5. #5
    Senior Member
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    I had a pump put in a little over a year ago, with good results. If you go to "advanced search" you can look for posts by me, with the words "baclofen pump". I have written a lot about it.

    I was up to a point that any more baclofen would cause me to nod off in mid sentence, and it was only taking the edge off. On a bad day I needed help with a lot of ADLs. It has made a huge difference in what I can do, and my independence, as well as comfort level.

    The first step is a trial, which will give you an idea of what effect it will have on you.
    T7-8 since Feb 2005

  6. #6
    The pump has saved my life. My spasms would be so bad without it that I wouldn't be able to sit in my chair without my legs straightening themselves out with every little move I make. My spasms would hit my trunk muscles so bad it would pull me over the side of my chair, a couple of times landing me on the floor. And it didn't matter how much oral baclofen I would take. I got my pump probably six years ago and it's been taking care of my spasms ever since. I still allow for some spasms, but nothing like it used to be. I recommend getting the test. It will tell you a lot. But for me, it was well worth 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.

  7. #7
    Thanks for all your input... I think it is time for "the" test. I will go ahead and call the neorosurgeon who puts them in. I really do appreciate all your responses. Rybread.. what you went through sounds a lot like what I am experiencing. We'll see how it goes....

  8. #8
    Senior Member jessie.gray's Avatar
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    I am on 80mg of Baclofen and have sorta the same problem with spasticity pain. I especially have trouble at night, where my legs will jerk and stiffen up like tree logs (it hurts like hell to bend them, so I always keep part of a body pillow between my knees as a cushion). There have been days where I just want to chop my legs off, becuase they are so spastic.

    On Wednesday, I plan on talking to my neuro about the Baclofen Pump and printing off some literature about it to take with me. Medtronic (the company that makes the pump) sent me a DVD about the therapy that I got in the mail yesterday, so I'm gonna watch it tonight for more information.

    Jessie

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