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Thread: another pump question

  1. #1

    another pump question

    Has anyone had a baclofin pump installed to help with their walking?

    I have found testimony from people who wanted to be flacid. They say it was a sort of a god send. I don't want to be all loosey goosey, but I need something. My tone has incresed pretty steadily since my injury. I guess that is normal. I was told that it was part of the reason that I could stand and then walk. However, there have been times and a period of about three weeks when my spasticity got alot better. It was after I went up to 160 mg of baclofen a day. I had much more control and felt alot stronger. I think it was because the antagonist muscles were relaxed and I had no spasms when the muscles were stretched. I am now taking 160 mg baclofen, 16 mg zanaflex, and 2400 mg of neurontin. Some days I can't function. I am zombified and It still doesn't do its job. I had the trial done and it was scary. I felt like I did when I got out of the hospital. I had no idea how much I relied on my legs for transfers, balance, and manuvering around in bed. I don't want it to all go away, but I feel that it is getting in the way of my walking, sleeping, and now my exercises and transfers. When I stand or walk now, I feel like I am cheating. I can tell that I am no really doing it and my tone is. Doctors have been talking about the pump for at least a year. That was the last thing I wanted. Others have warned me against it also, but I don't think they have the tone that I do. Can they really fine tune it enough to suit my needs? I am scared that I will have the surgery and it won't work like it is supposed to. When I stretch I have pretty good range. It just takes a while to get there. My muscles are like silly putty. They stretch slow and the more you work them the looser they get. When they cool off, it's back to stage one again. I have a follow up appointment to discuss all of this, but I already know what he is going to say. I think I am resigning to the fact that I am going to have to get it, but I need some reassurance that it is the right thing to do. On the other hand, if someone in my situation has had not so good experiences please tell me. I feel like there is so much room for improvement if my body would just cooperate with me. GGRRR!

    jOE

  2. #2
    My son is a C4-5 complete, and has a pump; he's never used his tone for transfers, etc., but had horrid spasms; was on 180 mg of Baclofen a day. His neurologoist suggested the pump 3 1/2 years ago, and it's been a godsend. We've never had any trouble with it at all.

    They can adjust the dosages pretty easily - it's all computerized - ie, my son uses a Stimmaster, and when he first got the pump, his leg muscles didn't 'fire' at all because of the baclofen in the pump. The docs adjusted the hourly dosage lower during the two hours he was getting prepped and on the bike, and it's worked like a charm. So they can 'fine tune' it quite a bit. You can also ask them to start you off at the lowest possible dosage to see how your tone is in general, and then make adjustments as necessary.

    Have you been on the Medtronic website? They're the folks who make the pump and there's a lot of good info on the pump there.

    Hope that helped.

    _____________
    What people say, what people do, and what they say they do are entirely different things. - Margaret Mead

  3. #3
    Senior Member McDuff's Avatar
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    I have no walking experience with the pump, but as Marmalady says they can really finetune a pump.

    The default setting on my pump is 100 microliter/day. They can tune it in 1% increments from there. The can also tune it to do different dosages at different times of the day. There are 2 concentrations of baclofen also, a high and a low.

    For me a 5% difference makes a big change in tone, going to start doing 1% changes soon to try and finetune even more. One potential problem is just the everyday swings in spasticity. Can't account for temperature differential which seems to affect me.

    You are right to be concerned, if I had walking abilty with my tone I would hate to chance it too.

    McD

    "Rather be ridin' than rollin'"

  4. #4
    Keep in mind that the test dose is a big bolus of drug given all at once. Its purpose is to see if it causes a signficant decrease in your spasticity. It does not simulate the therapeurtic dosing of baclofen with the pump in place. As I remember, you can set up to 15 different rates during the day, timed to your usual activities...you can decrease the dosage prior to your walking exercises, for example. The goal is never to make you flaccid, as this is not good for anyone (even those who do not walk) but to tone down the spasticity to the point where it is no longer dangerous, interfering with care, or interfering with function. When first placed, this does require a lot of fine and frequent adjustments, so it is important to have a team that will be available to you on a frequent and regular basis during the first few months at least. Ideally this should be the same clinic that provides your re-fill services (every 3 weeks to 3 months).

    If you don't like it, the pump can just be drained and turned off...it does not have to be surgically removed unless there is a complication.

    (KLD)

    [This message was edited by SCI-Nurse on 01-11-05 at 02:15 PM.]

  5. #5
    Senior Member alan's Avatar
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    As everyone reads this forum (as opposed to the Pain forum, which, obviously, attracts the people with pain), I figured I'd ask this here, with a larger viewership: Is it possible to thread a pump catheter up a scoliotic spine, or does the spine have to be in relatively normal alignment? In the discussions I had with doctors re a pain pump years ago, he said he'd have to place the catheter at C-6 at the lowest (no guarantee it would help, natch), which is right below my injury area (and where the hole in my cord ends.) I have a rather twisted thoracic spine, and a reverse-curved thoracic spine - could he even get the thing to C-6?

    Yes, I'm desperate, which is why I'm asking pump questions.

    Alan

    There's a fungus among us, and I'm not lichen it!

  6. #6
    Alan is is probably that you would have to have either an MRI or a CT with contrast to see how much space there is between your cord and your spinal canal at the levels where the catheter would have to be threaded.

    (KLD)

  7. #7
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    Originally posted by alan:

    As everyone reads this forum (as opposed to the Pain forum, which, obviously, attracts the people with pain), I figured I'd ask this here, with a larger viewership: Is it possible to thread a pump catheter up a scoliotic spine, or does the spine have to be in relatively normal alignment? In the discussions I had with doctors re a pain pump years ago, he said he'd have to place the catheter at C-6 at the lowest (no guarantee it would help, natch), which is right below my injury area (and where the hole in my cord ends.) I have a rather twisted thoracic spine, and a reverse-curved thoracic spine - could he even get the thing to C-6?

    Yes, I'm desperate, which is why I'm asking pump questions.

    Alan

    There's a fungus among us, and I'm not lichen it!

  8. #8
    Senior Member
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    Originally posted by alan:

    As everyone reads this forum (as opposed to the Pain forum, which, obviously, attracts the people with pain), I figured I'd ask this here, with a larger viewership: Is it possible to thread a pump catheter up a scoliotic spine, or does the spine have to be in relatively normal alignment? In the discussions I had with doctors re a pain pump years ago, he said he'd have to place the catheter at C-6 at the lowest (no guarantee it would help, natch), which is right below my injury area (and where the hole in my cord ends.) I have a rather twisted thoracic spine, and a reverse-curved thoracic spine - could he even get the thing to C-6?

    Yes, I'm desperate, which is why I'm asking pump questions.

    Alan

    There's a fungus among us, and I'm not lichen it!
    Alan,
    I haven't posted here so long I hit the "post" button w/o posting. As you remember from our past conversations I have pretty bad scoliosis.
    I had the ITB pump installed with no problems 4-5 years ago. WR

  9. #9
    KLD,are you saying that a person can have the pump programed to release a higher dose of baclofen at a certain time each day? Any pump users here had success doing as Splinter suggested?

  10. #10
    611, yes, the pump can be programmed to release x amount of baclofen at x time; I believe the doses are released hourly, and also calibrated so you can receive a higher or (as is the case with my son) a lower dose during a certain time period.

    I really would suggest anyone with questions visit the Medtronics website; they have a lot of info available.

    _____________
    What people say, what people do, and what they say they do are entirely different things. - Margaret Mead

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