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Thread: Baclofen pump FAQ

  1. #191
    Prayers and good wishes go out to you, this morning, McDuff -- pump surgery day is FINALLY HERE! I'll be watching and hoping for an update filled with news that you're feeling great and your legs are finally staying where *you* put them!

    Love ya, McD!
    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


  2. #192
    Senior Member McDuff's Avatar
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    Just got home. Surgery went well, no complications, so that's a good surgery.

    Bad news, doesn't seem to make a difference. In case there was going to be a difference, they dropped my dosage in half, from 900 to 450. They were going to take it to baseline of 100, but when they took the cath out, they could not see any problems with it. So they were worried I would hit withdrawals bad if they took me to 100.

    I think I had some withdrawals last night, did not sleep for shit, kinda felt like crap, and I was running a mild fever until this morning. But it all subsided by this a.m. luckily.

    I already had my pump nurse in today to up my 1/2 dose by 20%, at 540 now. My legs fought her bad when she pumped them. And my gut muscles were spasming too. I at least now know, that the pump is doing something, because I am way worse at 1/2 dose.

    But we shall see, maybe having the cath in a slightly different spot will help some. And I was gonna have to have the pump replaced in a year or so anyway, now it is overwith. I am pretty sore, and they have me wearing a binder for weeks, arrggghh.

    Bummer, but oh well. Thanks for all the well wishes, love you too Hipcrip.
    "a T10, who'd Rather be ridin'; than rollin'"

  3. #193
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    Sorry that didn;t do the trick McD. Glad the didn;t drop it all the way to 100. Just keep bumping it back up I guess.
    T7-8 since Feb 2005

  4. #194
    Aw, McD, while I'm very relieved to hear that the surgery iotself went so well, it just bums me out that you're still suffering from the severe spasms. Like sjean, I'm so glad they didn't drop it down to 100!

    While it sucks that you're going through this period of way worse, there's a big part of me that's relieved that they were cautious and dropped your dose by half after putting in the new parts. Turned out that my last pump replacement also fixed a small leak in the tubing, which had been preventing the full 960 ugs the pump said I was getting from reaching the cord. When that leak was fixed and that whole 960 dose did hit me full on, I lapsed into a coma, went into respiratory arrest, and almost died. These more severe spasms mioght be awful, but are highly preferable to the overdose alternative.

    So how soon can you get your next bump up?

    And sorry to hear that you've been condemned to the binder. That's was a real PITA.

    Rest up well, dear friend. I'm still hopeful that your spasms will fade away, right along with your soreness.
    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. #195
    Senior Member McDuff's Avatar
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    Thanks Ladies.

    Yeah Sjean, now I know to just keep taking it up...

    Damn Hipcrip, that is the exact scenario they wanted to make sure and avoid. Glad you came out of it ok, that was nasty OD.

    I am going to see her on tuesday to get another bump. She wanted me to rest and heal a little before doing it again, so I'll give it a few days.

    This binder blows. First off it is way too wide. Hell, it goes from almost to my nipples to my crotch when sitting, my incision is horizontal and the pump is only a few inches wide. I asked the neuro nurse why I needed a binder, she said that they have seen cases where spinal fluid leaks around the cath tip(til it seals well) and runs down the cath and pools in the pump pocket, the binder stops that somehow.
    "a T10, who'd Rather be ridin'; than rollin'"

  6. #196
    Senior Member rdf's Avatar
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    Damn McD. I was hoping you'd come out of the hospital smilin. Hopefully as they ramp you up you'll begin to see relief. If it's worked for years for you, then it should still work fine. I've heard of taking a drug 'holiday' from IBT in some cases, but most doctors seem to think no tolerance is really built up using intrathecal baclofen. Maybe when you get your dosage upped a few times it will begin to work again. Sorry to hear this buddy. Let's hope things work out in a few weeks.
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  7. #197
    Senior Member rdf's Avatar
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    Quote Originally Posted by cvdesty View Post
    Hello, I am new in this forum and am curious of the baclofen pump. I have a friend who is in the hospital for about a year now due to car accident and was wondering if Baclofen pump is a solution for his situation too. He is paralyzed waist down and he complains of spasms. Is there a criteria on patient who are allowed to have this? There comes a point sometimes in his life that he gets discouraged in his situation and I would like to help him. Thanks.
    His doctor would be able to hook him up with a test dosage to see if it helps.

    Check out this site: Medtronics

    The pump has been a godsend to many who suffer severe spasticity and/or spasms.
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  8. #198
    Senior Member McDuff's Avatar
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    Rdf, thanks man. I had high hopes too. I'll have her bump me another good jump tomorrow and see how it goes. In hopes of a lower dosage, they also put in the lower concentration 500 instead of 2000 ugs, so I will burn thru this "load" of med real quick.

    Cvdet, the pump is usually a last resort for controlling our spasms/spasticity. His Doctor will have tried all other options before getting a pump.
    "a T10, who'd Rather be ridin'; than rollin'"

  9. #199
    Quote Originally Posted by cvdesty View Post
    Hello, I am new in this forum and am curious of the baclofen pump. I have a friend who is in the hospital for about a year now due to car accident and was wondering if Baclofen pump is a solution for his situation too. He is paralyzed waist down and he complains of spasms. Is there a criteria on patient who are allowed to have this? There comes a point sometimes in his life that he gets discouraged in his situation and I would like to help him. Thanks.
    Spasticity that does not interfere with safety or function should remain. It is actually good for him.

    What has he done for his spasticity up until now? Is he taking medications such as Baclofen or Zanaflex? Is he standing daily? Laying prone (on his stomach) at least an hour daily? Doing at least daily stretching/ROM exercises? A baclofen pump should be considered a last resort for spasticity management, not the first thing that is tried.

    (KLD)

  10. #200
    Do you walk? I am a C7-T1 walking quad but I have alot of nerve pain from the lower back down. It never goes away and I have learned to deal with it somewhat. Im not a very happy person since the injury and maybe it's because Im in pain all the time; not real sure.

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