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Thread: Baclofen Pump Alternatives

  1. #1

    Baclofen Pump Alternatives

    Hi all,

    I am on the max dose of oral baclofen (actually, I've been prescribed a higher dose than what is typically recommended, at 100 mg/day). I still have a tremendous amount of tone and spasticity, to the point where the muscles have shortened on one side of my body, where apparently the spasticity is strongest, causing my hips to be misaligned and my body to tilt to the left. I do daily stretches to try to elongate those muscles, and am getting a new back and cushion for my wheelchair to better support my body. The cushion will be a Roho Quatro, so one hip can be elevated and the other can be lowered. These issues are causing some pain and discomfort, but the biggest issue is that they are also contributing to the development of scoliosis.

    My physiatrist keeps pushing the baclofen pump, but I would really rather exhaust all other resources before going that route. I can deal with the spasticity, tone and discomfort. The only way I would consider the pump is if it could indeed allow my muscles to relax and lengthen back out, correcting my hips and my posture.

    I've asked to be referred to a doctor of osteopathic medicine, which my physiatrist has agreed to, so we'll see if he or she can do anything with muscle manipulation, or come up with something else that might be beneficial.

    For those of you who have maxed out on oral baclofen or similar medication, to no avail, did you find anything else that worked to keep your tone and spasticity under control, without resorting to the baclofen pump?

    Thanks so much in advance for your suggestions.
    Somewhere, something incredible is waiting to be known. - Carl Sagan

    How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

  2. #2
    Junior Member
    Join Date
    Jan 2003
    Zephyrhills Florida, U.S.
    I have had a pump since 97. I was taking so much baclofen that I would lay back against the wall and sleep whole watching TV..It also worked so much better that I cut most pills. I quit sleeping all day too. I have had 3 and I have had no problems other than forgetting to get it filled.....GO FOR IT!

  3. #3
    No D.O.( basically instead of MD) I know except maybe one who specializes in PM&R does anything like that. A chiropractor might/ a good PT.
    You need to see a spasticity specialist to see in Botox/Phenol injections might help.
    Also the max for Baclofen for SCI is 120 mg//day. You could also try Tizanidine. But from what you are describing I think the ITB pump is your best bet.
    Depending on how long and how much you could have the ITB pump placed and have physical therapy consult to see if interventions would help.
    Also, it may not get better but- it could get a lot worse- the ITB pump would prevent that.

  4. #4
    I have recently been experiencing some pretty strong spasms in my stomach. I currently take 80 mg a day of Baclofen and am reluctant to go any higher. I have found taking some edible cannabis containing THC will keep those spasms under control for almost 24 hours. Because of my apparent high tolerance I need to take 60 mg THC in order to stop the spasms. I'm not sure if Maine has legalized medical marijuana or not, but this may be an alternative for you to try.
    C5/C6 since 2007 due to car accident

  5. #5
    I used to have vigorous spasms that would pull me over the side of my chair or straightten my back out. They kept on getting worse and worse so I finally got a baclofen pump and that made the biggest difference. Check out my post "Baclofen pump FAQ". There's lots of information there about the pump. I think I even have a picture of one of my old ones in their.
    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.

  6. #6
    I have to concur with everyone - it seems to me that the IBP is probably the way to go. Of course, there are no guarantees but as was stated above, while the spasms may not get better, it should prevent them from getting worse.
    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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