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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
    Member
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    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.
    CWO

  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.
    DaDutchman
    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.
    ckf
    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.

  7. #7
    Before they put the pump in the pump Dr. should do a test to make sure it's going to work. Before I had mine, the doctor injected a little baclofen right into my spinal cord to prove that it worked.
    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.

  8. #8
    Quote Originally Posted by rybread View Post
    Before they put the pump in the pump Dr. should do a test to make sure it's going to work. Before I had mine, the doctor injected a little baclofen right into my spinal cord to prove that it worked.
    The test dose is given through a spinal tap procedure, and is actually injected into the CSF (cerebral spinal fluid) surrounding the cord, not into the cord itself. The person is then examined over the next few hours to assess the effect of the injection on their spasticity.

    (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.

  9. #9
    Senior Member ChesBay's Avatar
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    Quote Originally Posted by Ptarzan80 View Post
    Hi all,

    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.

    Not all Osteopaths practice it but if you can find a DO that is qualified to do "Osteopathic Manipulative therapy" (OMT) I would highly recommend it. I had excellent results with an osteopath who practiced this method and it was the most amazing results I ever got from any treatment modality, medication, chropracters, physical therapy and more. I had constant nerve pain and spacity. I can recall two occasions after getting treatments when I had to pull over in a parking lot and slept right in the driver's seat of my car. It was as though it was the first time I was relaxed and relieved of pain in years. I couldn't tell if I passed out for 20 minutes or 90 minutes but the treatment made an incredible difference. If you can find someone good and qualified I would say go for it.

    I am familiar with Maine but don't know what you are near.
    A Google search for, "osteopathic manipulative therapy in Maine" yields several results. I would ask if they do the manipulative therapy. In this area there are many osteopaths but only a few that do OMT.
    Wishing you all the best. PM me if you have any questions.

    eta: I looked up the DO that I was treated BY and he is a graduate of the University of New England College of Osteopathic Medicine , in ME.
    Last edited by ChesBay; 08-19-2017 at 03:04 AM. Reason: eta: info

  10. #10
    Quote Originally Posted by Ptarzan80 View Post
    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.
    I felt the same way for a long time. But there really weren't any reliable alternatives for me. When I finally got the pump, I said to myself I should have done it sooner.

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