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Ambulatory and considering baclofen pump

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    #1

    Ambulatory and considering baclofen pump

    In the second year of my injury now and one of the biggest issues for me is extreme muscle tone in my legs. I've got pretty good leg strength, but everything is just so tight. My quads, calves, and hamstrings are constantly fighting each other and pulling in the wrong directions, making it really hard to bend my legs at the right times and in the right places for walking. I'm also being pitched forward all the time by my tight calves, so I'm basically walking on tip-toes. It's really frustrating because the tone is the only thing stopping me from having a much better gait and it just seems to be getting worse.

    Over the past year or so I've been in a process of cycling through different oral meds, none of which have worked. I've been on baclofen the whole time and have also tried tizanidine and clonidine. I've gotten to the max dose of each one without noticing any change, only increasing side effects. I'm now discussing with my doctor the possibility of trialling a baclofen pump. Are there people here who use a pump and can walk? Has it helped your walking, or does the loss of tone/spasticity make things harder?

    I'd really appreciate it if anyone could share any experiences or advise. ​
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    #2
    Yes, there are people with incomplete SCI who can walk who use baclofen pumps. It is critical that you have a surgeon and a follow-up physician who know what they are doing and are very experienced in this with those with incomplete injuries. Your follow-up physician adjusts the dosage which can be programmed for as many as 15 different dosage levels a day, and it is critical that your dose not be too high as that can result in flaccid muscles and not enough tone for you to stand and walk. Many people have a higher dose at bedtime and during the night so their tone and spasms don't disturb their sleep, then back off a bit in the early morning so they can exercise then, for example.

    (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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      #3
      Just know that withdrawal is a big issue with baclofen. One withdrawal symptom is increased tone and spasms. Hence, there is a tendency to have to increase your dose on an ongoing basis or else your tone may actually get worse. I am not saying not to try the pump. Just letting you know something that they didn't tell me up front. Another thing to know is that the pump is much more effective at relaxing your muscles. This is good and bad. Obviously, the good news is that you can reduce tone better with the pump than pills. Bad news is that it relaxes all your muscles. In other words, you may loose strength.
      • Likes 1

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        #4
        Thanks KLD and August West, they’re good points. In terms of the strength issue, my leg muscles are pretty strong, especially my quads, I just can’t use the strength very effectively because they’re also so tight. Hopefully this would mean that even if I did lose some strength this would be offset by the reduction in tone so I’d end up being able to walk better.

        I’m currently at a children’s hospital that hasn’t done a huge amount of work with SCI, but I know that my doctor has lots of experience with the pumps for kids with CP. I’m at an awkward stage where I’ll transfer to an adult hospital next year, but I’ll be going to a specialist rehab hospital that has lots of experience with SCI, so hopefully it will be a pretty smooth handover.

        Is withdrawal usually less of an issue on lower doses, or do you end up creeping up the dose no matter where you start? I’m hoping that if I’m able to walk a lot more with less tight legs, that might end up easing the tone anyway, so I might not have to rely on the medication so fully.

        Comment

          #5
          Have you seen a spasticity specialist? Phenol injections can be injected in the larger muscles and Botox and similiar in smaller muscles. If these don’t work then baclofen pump is considered. Baclofen pump dosing always starts with lowest dose. But can’t be too high or you won’t be able to walk as your muscles can be limp as a noodle. That is why you need a specialist and physical therapy for in-depth evaluation before and during pump c
          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.

          Comment

            #6
            Sorry , too finish… consideration and while dosing. It is complex but possible. 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.

            Comment

              #7
              Sorry for the late reply, I’ve been a bit all over the place lately, but to answer your question, the doctor I’m seeing isn’t a spasticity specialist, but he’s one of the heads of rehab at the hospital, so he’s got lots of experience with spasticity. He’s done Botox injections in my legs before, but there’s never enough to actually address all the muscles, as so many are stiff. I’m currently having them in my hands, with very temporary effects. But I’d definitely be having lots of conversations with him before going down the pump route, and working with the hospital physios as well as my community ones.

              Comment

                #8
                Large muscles need phenol. Only spasticity specialist will do. I would get another opinion from spasticity specialist before going to baclofen pump. Not saying your rehab doctor isn’t good but bacofen pump implant is a major surgery and can have complications. 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.

                Comment

                  #9
                  Had a Mayo rehab doc who said he was involved in BP development tells us—Bp was not intended to be used with ambulatory patients.

                  DH experience supports this. Became non-ambulatory months later but to each their own path….

                  Comment

                    #10
                    Agree but it has been done. But everyone needs tone to walk on. You can’t give one area of the cord, or one leg a lower dose than the other. And needs a super expert to assess. My opinion is try Phenol injections, Tizanidine, therapy, anti inflammatory es etc.. before the ITB pump. It can be set to give higher doses during sleep and if a low dose can cover the spasticity then is it really needed. Tizanidine will make you sleepy at first but it can help a lot. Also, you might try COQ10. Research shows it is helpful in Parkinson’s person and is heart healthy and can lower blood pressure. People in statins have cramps and spasms and it drastically reduces them. Also Magnesium in low doses. 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.

                    Comment

                      #11
                      Originally posted by SCI-Nurse View Post
                      Large muscles need phenol. Only spasticity specialist will do. I would get another opinion from spasticity specialist before going to baclofen pump. Not saying your rehab doctor isn’t good but bacofen pump implant is a major surgery and can have complications. CWO
                      What type of doctor specializes in spasticity? Would that be a physiatrist? Need to know where to look.

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                      • smity50
                        #11.1
                        smity50 commented
                        13 Mar 2023, 9:53 AM
                        Editing a comment
                        I think they are movement disorder specialists. Neurologists with a specialty I think.
                      #12
                      Physiatrists - Rehab specialty physicians, as above, movement disorder specialists
                      Some Neurologists may have that as a specialty
                      SCI-Nursepbr
                      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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