Announcement

Collapse
No announcement yet.

Bad Spasm, Baclofen pump.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Bad Spasm, Baclofen pump.

    Hi guys! My name is Roman. I was injured 1.7 years ago.

    I started to have spasms 9 days after my injury. With each month my spasms was increasing. Now I'm taking max dose of Baclofen and Tinizidine and I still have very bad spasms. Now I planing to get Baclofen pump. Do you have any suggestion on it ? What should I worried about ? What should I expect after implanting Baclofen pump ? What is side effect after implanting ?

  • #2
    Hi Roman, I've had a baclofen pump for 24 years. It changed my life, in a good way. I had severe spasticity that no oral med could ever mitigate. When I got the pump, I was literally spasm free after 10 years of fighting spasms. Get the test dose, see how it feels, then go from there. I haven't had any side effects that I can think of, except getting used to transferring without spasms, takes getting used to. You can program the dosage to retain some of your spasticity, it takes a while to find the sweet spot. I get refills every 5 months. Good luck!
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

    Comment


    • RomanRybak
      RomanRybak commented
      Editing a comment
      Thanks. I already try and it feels good. I have my surgery schedule on next week. I'm 22 years old with T9 complete I just very scared about it.

  • #3
    I'm T5 and spent a decade fighting spasms, they were bad and often threw me out of my chair. I had to bungie cord my feet to the footrest because I'd get full body spasms and my feet would shoot straight out, and whoever was in their trajectory was going to get kicked. Fought that all through college, but I was your age and dealt with it. Then my dr turned me on to the pump, and I still talk to him on occasion and thank him for that every time we talk, ha.

    You'll be fine, easy peasy surgery, you go home the same day. Just be careful as you're used to the spasms when you transfer and even roll in your chair, and they'll be gone. After a few days you'll forget you even had them, your life will be much better, good luck and good vibes your way Roman.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

    Comment


    • #4
      Howdy Roman, welcome to the zoo...

      I'm with rdf, my pump saved me from excruciating spasms and "tone"(spasticity), mostly tone. I've had it for going on 16yrs now, and don't regret a day of it. Like you I was at about 1.5yrs into sci, I'm a T10, and my legs turned to stone, they were locked together and straight out. I could not bend them or separate them by myself at all, even my wife, with leverage, had a very hard time getting them to bend so I could sit in my chair.

      When I woke up from surgery and my legs were lying loosely on the bed, and not trying to crush my nuts, for the first time in months, I coulda cried of happiness. As rdf said, it will take time to get it adjusted "just right", so don't get riled if they're not quite right at first, as with anything in this damn sci world, it's all trial and error.

      It is a hockey puck sized obstacle in your belly area, so you will most likely notice it is there, but you quickly learn to adjust or forget it's there most of the time. Refills go easy, my nurse practitioner does me sitting in my chair. I am at a high dose, plus have a mix of other meds trying to fight pain, so I only get about 8 weeks between refills.

      Good luck dude.
      "a T10, who'd Rather be ridin'; than rollin'"

      Comment


      • #5
        Originally posted by McDuff View Post
        Howdy Roman, welcome to the zoo...

        I'm with rdf, my pump saved me from excruciating spasms and "tone"(spasticity), mostly tone. I've had it for going on 16yrs now, and don't regret a day of it. Like you I was at about 1.5yrs into sci, I'm a T10, and my legs turned to stone, they were locked together and straight out. I could not bend them or separate them by myself at all, even my wife, with leverage, had a very hard time getting them to bend so I could sit in my chair.

        When I woke up from surgery and my legs were lying loosely on the bed, and not trying to crush my nuts, for the first time in months, I coulda cried of happiness. As rdf said, it will take time to get it adjusted "just right", so don't get riled if they're not quite right at first, as with anything in this damn sci world, it's all trial and error.

        It is a hockey puck sized obstacle in your belly area, so you will most likely notice it is there, but you quickly learn to adjust or forget it's there most of the time. Refills go easy, my nurse practitioner does me sitting in my chair. I am at a high dose, plus have a mix of other meds trying to fight pain, so I only get about 8 weeks between refills.

        Good luck dude.
        Howdy McD, good to hear you're doing well old friend ^5
        Please donate a dollar a day at http://justadollarplease.org.
        Copy and paste this message to the bottom of your signature.

        Thanks!

        Comment


        • #6
          I'll throw in another vote for the baclofen pump. It took me about 5 years to get to the point where I needed to strap myself down in multiple places just to get around. And the spasms would wake me up every night.

          The dose from the baclofen pump is like a thousand times smaller than the oral dose (micrograms vs. milligrams), and it's delivered directly into the spine. So you won't have any of the side-effects of the oral baclofen.

          I went from the max dose of oral baclofen to a very low dose of pump baclofen (around 50ug per day). I have almost no spasms, and lost the perpetual cottonmouth and fogginess.

          Comment


          • #7
            I would just add that it is critical that you have a surgeon who is very experienced in doing your pump implantment surgery, and that you have already set up who will be doing your refills and dosage adjustment when needed. Initially you may need frequent visits with this provider in order to get the settings right for your needs. Generally it is not the surgeon who does the refills and adjustments; it is more likely to be a neurologist, physiatrist, or a nurse practitioner who works with one of these physicians.

            (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.

            Comment


            • #8
              I would add, that I can not think of anyone I know who had the pump and is not happy with the results. You need to give it a little time, but you will find the right dose and it will be a game changer for you.
              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.

              Comment


              • #9
                I have the baclofen pump. It's a great improvement in quality of life. Baclofen pills never did the trick but always created side effects. The baclofen pump is the way to go.

                The downside to the pump is that pump failure leading to withdrawal is serious. It can lock up your muscles so strong that you may break bones or find it impossible to breathe. It can kill you. Always have oral baclofen available in case of pump failure.

                I keep my dosage low because I want some spasms to promote blood circulation in order to help maintain muscle and skin integrity. When the spasms get too much I give myself a bolus with a remote control. If that doesn't work I take some oral baclofen. Even though oral baclofen is a complete failure for chronic spasms it's a great option for acute spasms. If i find acute spams becoming too frequent, that's when I increase the pump dose. Personally, I will never have the dose so high that I have no spasms.

                The ideal dose varies from person to person. It even varies from time to time for the same person. Don't be afraid to test different doses. Once you tune in your dose, it's still ok to change it from time to time to accomodate your needs. For example, if you keep your dose low on purpose as I do, you may want to increase it while on vacation to be more relaxing.

                The right doctor is important. My first pump was being managed by a neurosurgeon's PA, who couldn't recognize baclofen withdrawal when it bit him in the face. I had to find a different doctor who immediately recognized the withdrawal symptoms and replaced the pump. Problem solved. In hindsight, I avoid PAs and will avoid surgeons for anything but surgery. I like having a physical medicine doctor manage the pump because he understands SCI better than most others and can help with other care.

                Comment


                • #10
                  The right doctor is key to the success of the pump. You should be in communication with him or her when you are changing the dose. This is especially important if you are raising it, because your fill will not last as long.

                  If you have a sudden change in spasms that can be a sign that something acutely is going on. Think uti or bladder issue, pressure injury, bowel issues. It can also be less serious things, but you should let your physician know that something may be going on.

                  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.

                  Comment


                  • #11
                    If it's not a pump malfunction, it's always been related to the urinary tract for me. Kidney stones were the culprit last time. When that happens the dose really doesn't matter. Spasms will win.

                    Comment


                    • #12
                      That is true, August West! When the spasms are coming from an internal stimulus like a uti or stones, there is no controlling them until the stimulus is removed. It is important to let your physician know when there is a sudden change in spasms, since that is a warning sign that something is or has developed.
                      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.

                      Comment

                      Working...
                      X