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Thread: Baclofen pump FAQ

  1. #171
    Hi Lee,

    Saying a prayer for you today.

    Being evaluated for a pump tomorrow myself.

    Let us know when you can.

    Kindly,

    Bill

  2. #172
    Senior Member McDuff's Avatar
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    Speedy healing. Hope you get the results you hope for.

    I get a replacement pump/cath on 6/3
    "a T10, who'd Rather be ridin'; than rollin'"

  3. #173
    Good luck Lee and bollefen, I'm having my surgery Monday. I just left a message for the P.A. to call me and answer a few questions I have. Seems the closer the surgery gets the more I think about it.
    No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
    Fredric Lieberman

  4. #174
    Bollefen, I've got my fingers crossed that your trial is a success. I will never forget mine -- I could feel the baclofen kick in and my legs start to relax. Couldn't stop giggling as the PT came in to do the "after" evaluation because there was no pain, almost no tightness, and no danger that I was going to kick the crap out of her or any innocent bystanders because being touched set off violent spasms. Please update us on how things go for you tomorrow.

    Zoso -- got those same fingers crossed for your surgery on Monday. It's only natural that you're thinking about this more as the surgery gets closer, and great that you're asking all of your questions now. Having a good PA to work with is a lifesaver. Hope everything goes well during and after, and that you can find your magic level quickly.

    McDuff -- I know June 3 can't come fast enough. You must be so tired of waiting!
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  5. #175

    No luck with the pump so far

    Still no luck with the pump. I had it implanted in February. Since then I've had many dose increases, now up to 800mcg/day with four-hour bolus doses, but still no relief from the spasms.

    I had a catheter study [CT scan w/contrast] and was told that the fluid is not dispersing properly. The catheter tip is inserted between my two injuries at T7 and T10. It's not completely clear to me why there is a problem, perhaps the baclofen is pooling between the to scarred areas on my spinal cord. In any case, I was told the catheter was not placed properly and that I would require surgery to fix the problem.

    My big concern is that the baclofen might be causing arachnoiditis. I asked if this was a possibility but did not get a clear answer. I can say that my neuropathic pain has increased significantly in the past few weeks.

    We haven't heard back from my surgeon yet, so I'm not sure what the plan is at this point. I guess they'll have to reposition or replace the catheter, or insert a new one. I'm concerned about the noticeable increase in pain. I'm wondering if I should ask for an MRI and perhaps a second opinion on the situation before I proceed with another surgery.

    Any ideas or suggestions regarding my situation?

    Thanks,
    0

  6. #176

    Update

    Hi all, Hipcrip

    this was the preliminary visit. I won't get the actual trial til June

    I've got enough hardware and history that the doc wanted a personal visit, eval and discussion before doing a trial even though he and my prmary pain doc a re friends

    will follow up as this moves on in the slowness of medical time.

    bill

  7. #177
    Senior Member McDuff's Avatar
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    Hipcrip - Boy I remember that test shot too, took 6hrs before it had any affect. Seeing my legs all floppy was so weird after months of rigid "lumber" legs. Never have been able to replicate that with this pump/cath, sure hope new ones will do the trick.

    Zero - I asked my Nurse Practicioner if baclofen in other parts of my body could cause any problems. She said no, but of course this wasn't in reference to any one spot precisely.

    C'mon June th...
    "a T10, who'd Rather be ridin'; than rollin'"

  8. #178
    Has anyone else here suffered arachnoiditis (inflammation of the lining of the spinal cord) as a result of baclofen?

  9. #179
    Zero -- damn, I was so hoping that the 4 hour bolus was going to move you closer to where you need/want to be. I'm pretty sure you don't need to worry about arachnoiditis from the baclofen, but it is a question worth getting a clear answer to ASAP.

    What a drag that you need to have catheter work done! Have you heard from the surgeon yet as to the plan? I would definitely talk with him/her about getting an MRI done before any surgery takes place, not only to see if there's anything obvious that might be at the heart of your increased pain but also so the surgeon can get an idea of the lay of the land for revised catheter placement before you go in for the procedure. It's gotta be frustrating as all get out to not only still have all the spasticity problems and now have increased pain levels, too.

    bollefen -- how did your consult go?

    McDuff
    -- I'm the same as you as far as never quite getting the same oomph with the pump as I did from that first one time dose during the trial. Perhaps on June 4, you will be the first in our little group to achieve that...
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  10. #180
    Hi all,

    Eval went well. The doc has me scheduled for June 28th fro the trial. He's indicated I have some issues ...duh. But is willing to proceed. Issues are a lot of hardware, multi sourced pain and the ability to have meaningful relief.

    Net despite being apprenhensive almost scared based on so many surgeries with such compromised outcome I'm hopeful this will help.

    Thanks for your kind thoughs and interest.

    Bill

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