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Thread: Nurse or anyone: is baclofen pump adjustment "linear"?

  1. #1

    Nurse or anyone: is baclofen pump adjustment "linear"?

    I came home from pump implantation unable to move my weaker leg at all and only very slightly could I move my stronger leg. I didn't go into surgery that way. Two months post-op and tons of work and I'm back to a little walking w walker a few times per day, which is possibly what I deteriorated to during the 8 month hell of insane spasticity and spasms. I still have searing discomfort and a fair amount of spasticity (no spasms) from about 2pm-2am. I'm terrified of losing any strength. If I let him turn up the setting, will I necessarily get weaker since my initial low dose as well as the trial made me unable to walk at all?

  2. #2
    Senior Member
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    I do not know exactly what you mean by linear but I do have some concerns. You say you have searing discomfort. Where is this pain? The pump insertion site (incision in your lower side) should have healed by now. I do know that the pump does not cause as much fatigue in most people as oral baclofen. It can take a while and several visits to get the does and timing right for you. The ability to schedule doses may be dependent on the pump model. What does your doctor say about these issues?

    When Ry had his installed, he was weak for a bit (it is surgery and he came home the next morning and should have waited plus he had to go get a plug for a leak) We had to go to the doctor for activation a week or so after installation so in the interim, it has rough with the spasticity. Now, he has had a few adjustments in the 18 months or so but he is walking with his walker better and I have seen him walk with a therapist on each arm. and no walker. If we could only get his orientation in space to firm up.

    Go back to the doctor and discuss your issues. Be willing to tweak your dose and the timing of the doses. I know Ry gets a bolus does at 10:00 pm to calm the clonis (acts up when he pushes but you don't reach goals without pushing). This helps him settle and get to sleep without impacting his mobility in the morning. He did not try walking during the trial, they were more concerned on the impact on his spasticity. Again, it took a while and is still not perfect but he is not in pain of any kind. He as good energy days and not so good days. Then again, he has transitioned to a manual chair in the last few months and returned to school three weeks ago.--eak
    Elizabeth A. Kephart, PHR
    mom/caregiver to Ryan-age 21
    Incomplete C-2 with TBI since 3/09

  3. #3
    The burning pain is worst at my toes and dissipates by 3/4 up my thighs. I had associated it w the surge in spasticity I had starting last spring but now the spasticity is dramatically lessened but this pain still roaring. Makes me wonder whether it might be neuropathy? Maybe the chicken was always neuropathic pain and the resultant egg was spasticity. Yeah, linear was an odd word to use! What I mean is that if I up the dose by 20%, will I necessarily get 20% weaker?

  4. #4
    A baclofen pump will distribute baclofen at a much more concentrated dose into the CSF of the spinal cord
    baclofen will loosen the muscles that are firing off the impulses that cause the spasticity.
    spasticity tightens the muscle which can be functionally beneficial when walking
    if the baclofen dose is too high your muscles could become like noodles
    physical therapy along with dosing the right amount of baclofen is extremely important to coordinate
    Neuropathic pain can accompany spasticity and you should discuss how to manage at with your provider

    pbr

  5. #5
    I started a thread a long time ago called "Baclofen pump FAQ". It lists many of the features of the baclofen pump.. Over the years I've tried many different things one of them being boluses. It can inject a decent about it anytime you wanted to get rid of spasms and tone at any time you wanted to. It's done a lot for me. Without it when specimens are so bad that I would bounce out of my chair. You can also have different drugs put in it to help with Pai. I have fentanyl running through my head right now to help with some lower back.. It's making a big difference. It takes some playing around but eventually you'll get it set where you want it.
    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.

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