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    ITB / Baclofen Pump Trial

    Hello,
    I read the sticky on the pumps and a large number of posts from those who have had baclofen pumps done.

    I go in for the ITB test on July 12 and I'm extremely excited and also apprehensive. I want to stop taking these huge doses of baclofen, zanaflex, and valium everyday and stop the Botox injections. I want to be able to be more active/mobile on this frustrating leg of mine.

    If I pass the test though, that means surgery, which I am by no means new to sadly - but attaching a catheter to my spinal canal and on the other end is a pump they implant in my body.

    I know I'm putting the cart before the horse as I haven't even passed the test yet. It's such a huge decision, but if it can truly be life-changing for my mobility, I want to try.

    I have a 6 y/o daughter that needs her dad to go do things with her and it's a struggle just to work my shifts so many days that I can't go in.

    Would anyone recommend for / against? I value any input from those with experience.
    Thank you.

    #2
    I had a pump installed on April 10th of this year. I was barely ambulatory at the time. The pump removed my spasticity and pain. I now take fewer pills. The pump is a big commitment but does wonders.

    My first 50 mcg "test" did nothing. I had to have a second at 100 mcg to see any effect.

    The pump removed my spasticity and pain but it revealed the fact that my leg muscles had atrophied. I'm still working to get my strength back.

    Good luck to you.

    Comment


      #3
      Hopeful

      Thanks for your reply. I'm so hopeful for a fix, but it comes at such a price.

      If it does all it's supposed to do, it will be worth that price.
      Thanks again.

      Comment


        #4
        Hi Sazed

        I wish you the best with the trial. I have had a baclofen pump since 1999..not the same pump...LOL.
        I am currently on my 4th pump and the 3rd generation of the pump.

        It has controlled my spasticity and I am able to do whatever I want to do. I understand your concerns with the pump. I had the same concerns you have.

        I am glad you are reaching out here. We do have a small group of folks who have the baclofen pump, who are always willing to share their experience.

        Medtronic also has a program where you can talk with a current baclofen pump user.
        http://www.baclofenpump.com/consider...ient/index.htm

        I am part of the Ambassador program and have talked with some of the pump patients here.

        Wishing you the best,
        Bob

        Comment


          #5
          My trial

          My ITB was bumped to August 16.

          My test dose was 100 mcg and it was successful. Removed all of my spasticity and I gained more movement in my hips and knees. After 3 hours, I was walking without pain (though my legs felt a little weak because it might have been too much).

          Now, I have to find a way to get the time off work for surgery and recovery. I have no idea how long to estimate I'll be off and I'm the only one that works.

          What a wonderful relief those hours without pain and stiffness were. To have that every day! Wow! I could do so much more.

          Thanks for your replies guys. Sorry it took me so long to get back on to respond.

          Comment


            #6
            Hi Sazed
            Glad to hear the trial went well. I hope things work out so you can get the pump installed.

            Take Care, Bob

            Comment


              #7
              Hi Sazed,

              I just had my 2nd pump implanted. The first pump was implanted in 2011 so their battery life is about 6 years. I always say it is the best decision I made in my MS journey. I was barely mobilize and it has kept me mobile for the past 6 years. That is not the experience of everybody but it was for me. Although for me it did nothing for my stamina in walking, and my gait is a little won't, I am able to get around and the pain in my legs is gone. Good luck with your pump.

              Comment


                #8
                Placement

                Thank you. I really feel encouraged to do this now. I met with the neurosurgeon today and he wants to implant the pump in my mid to upper back "because in larger people the pump can turn/float a little and you can lose access to the port."

                That seems so uncomfortable and that he wouldn't get it far enough under to not leave a big lump, but he says it can be done.

                I have to go talk to my physiatrist again and then we will probably schedule this thing.

                Comment


                  #9
                  I don't think I've heard of that placement, but what he's saying makes sense. Each time you have a refill, the physiatrist has to access the port in the pump. They do this by touch, and it is rather amazing that they can figure out where the port is and access it with a syringe, remove the unused baclofen and insert the refill of baclofen. They are quite skilled at this, it amazes me every time it's done.

                  If the pump was inserted in a place where the physiatrist could not feel the surface of the pump, a refill would be much harder.

                  As far as a bump, I have a bump on my abdomen where the pump sticks out. For years now, I've worn a lightweight binder because I have had my pump move and float before, but the binder seems to keep it secured and diminishes the bump a bit.

                  Talk to your physiatrist. Sometimes they are able to convey and explain the pump implantation in a way that's clearer than the surgeon, at least that's been my experience. And apart from the
                  surgery and incision healing, the surgeon is not the one you'll be dealing with for the next 6 years,
                  your physiatrist will be your caregiver for the pump.

                  Good luck with your surgery.

                  Comment

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