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Thread: Baclofen pump FAQ

  1. #181
    Senior Member da lurker's Avatar
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    I got a pump a year and a half ago because i couldn't take baclofen orally. 10 mg would wig me out for a day or two. Moronton, lyrica, zanaflex and all the T epileptic meds turned me into a turnip that looked like Mr. Hyde.
    My pump is at 200 mcg and is working very well with the spasms and fair with the spasticity but almost not at all with the pain in my legs. The pain becomes horendous when I move around and beings I'm a doped up walker I move around. The dope (hydrocodone) only helps the pain a little and for a short time. I have been leaning quite strongly towards trying ketamine in my pump. I see in this quote where morphine needs to be changed out frequently. I was wondering if anyone knows how long ketamine's "pump life" is. I see where numb1 and someone else in this thread are using it.

    Sorry to the people who have been having proplems with their pumps. Everything seems to have went ok with the installation of my pump. It took what seems like a year to get it adjusted mostly because the efing pain wouldn't go away and i keep getting real depressed about it. Adjusted it up than down. Man i hate medical crap. Its getting to where I need anti-anxiety meds for shots. Anyway, thanks.

    Quote Originally Posted by rdf View Post
    They can only change the concentration by refilling the pump. The amount pushed through the catheter can be increased by computer at any time.

    Be aware that having morphine along with baclofen means you'll have to get refills every month or so, or even every two weeks. With baclofen alone, you can probably go 6 months between refills. Going every few weeks or every month can become quite costly, depending on your insurance and/or your copays.

  2. #182

    24 hour wait?

    I finally had my pump put in and everything went well. I ate at Sonic as soon as I left the hospital They said the pump would start in about 24 hours and I thought that was odd.

    So I'm in bed waiting for it to kick in not knowing what to expect. The incision is quite a bit higher than I expected and on my right side about even with my belly button. That's about my level so I'm pretty sore.

    Hopefully everything will be fine and I'll let you know when I know.
    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.
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  3. #183
    Senior Member McDuff's Avatar
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    Maybe they meant you would start feeling the effects in 24hrs? I think they start the pump right away.

    I get my new one on Wed so I'll se what they say soon.

    Good luck on results of having your pump.
    "a T10, who'd Rather be ridin'; than rollin'"

  4. #184
    The pump is turned on in surgery, but the catheter is usually filled with normal saline when it is inserted, so it may take up to 24 hours for the pump to push that through into your CSF and then for the baclofen (and any other drugs) to start reaching the intrathecal space. It would be very rare for you to feel the pump working or pumping. If you hear tones, those can indicate that the battery is low or the pump needs to be refilled.

    Have you already stopped your oral baclofen? What did they instruct you about this?

    Did they give you any pain medication for your incisional pain?

    Just remember that it is very common to need fairly frequent pump adjustments over your first few months to find the right settings/timings for you. Work closely with your physician on this.

    (KLD)

  5. #185
    Senior Member rdf's Avatar
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    Quote Originally Posted by McDuff View Post
    Maybe they meant you would start feeling the effects in 24hrs? I think they start the pump right away.

    I get my new one on Wed so I'll se what they say soon.

    Good luck on results of having your pump.
    Good to hear McD. I know it's been a long time coming. Good luck buddy.

    I've always come out of surgery with the pump working, as they bolus the pump to fill the catheter during the surgery, or shortly thereafter. But those have been pump or catheter replacements, I can't remember how it was the time I got the pump and the catheter both. It might be different for the first surgery to implant the pump and hook up the catheter. But looking back, I do believe it was working when I woke up from surgery even then.
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  6. #186
    Quote Originally Posted by SCI-Nurse View Post
    The pump is turned on in surgery, but the catheter is usually filled with normal saline when it is inserted, so it may take up to 24 hours for the pump to push that through into your CSF and then for the baclofen (and any other drugs) to start reaching the intrathecal space. It would be very rare for you to feel the pump working or pumping. If you hear tones, those can indicate that the battery is low or the pump needs to be refilled.

    Have you already stopped your oral baclofen? What did they instruct you about this?

    Did they give you any pain medication for your incisional pain?

    Just remember that it is very common to need fairly frequent pump adjustments over your first few months to find the right settings/timings for you. Work closely with your physician on this.

    (KLD)
    My neurologist dropped my oral baclofen to 5mg-5mg-10mg. I'm still in pain and have a good bit of spasticity and spasms. They prescribed the same pain meds I already take.

    At least I have the pump in now so we can tweak the dosage.
    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

  7. #187
    Glad to hear you're now pumped, Zoso. By now, the IT baclofen should be hitting your CSF -- I had my first pump placed in the early evening, and by the next morning I was feeling the full effect. (Namely, my initial dose was so high that it made my right leg totally limp, leaving my with such bad noodle leg that I was more paralyzed after surgery than I was before. Everything came back after turning the pump off for 12 hours and lowering the dose.)

    If you're not feeling any positive effects, Zoso, it probably means you already need your first dosage tweak. I'd call your doc first thing Monday morning and let him/her know that you've noticed no improvement.

    If your incisions are hurting, I'd also demand some better pain management, getting the hospital's patient advocate involved if necessary to get it. Expecting your baseline, daily meds to manage the added pain from this surgery is unrealistic.

    McDuff
    , HOORAY that your surgery day is finally here. Got my fingers crossed that you'll be feeling spasm relief by Thursday morning!
    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


  8. #188
    Senior Member McDuff's Avatar
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    Rdf & Hipcrip,

    Thanks for the good words. Yeah, I am soooo ready...

    Got into my s-i-l's car today, an unusual xfer, man my spaz was nutso. I want to be able to move my legs myself again instead of having someone else "break" the tension in them.

    tick,tick,tick, Are we there yet dad?
    "a T10, who'd Rather be ridin'; than rollin'"

  9. #189
    It took a few weeks of increasing dosage for me on my first pump. The initial baclofen in it was much less concentrated than the stuff I use now. They'll probably change that also once they get the dosage somewhat right.
    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.

  10. #190
    I was tested at a 100 mcg/day and had 2 increases the first month then I started having a home nurse come and increase each month. It took a year to get my dosage leveled out I am now at 554mcg during the day and 600mcg at night. I was put back on Zanaflex 150mg 4 times a day for my arms about 2 months ago. Just remember the Baclofen only helps from the point of your catheter and below. I feel that I am at my level of dosage of Baclofen, and it feels good to be spasm free.

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