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Thread: Baclofen pump FAQ

  1. #301
    Senior Member Axle's Avatar
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    Quote Originally Posted by MSspouse View Post
    Thanks for the info. Is that what is billed to Medicare/Insurance? I'm curious what is actually paid by Medicare and what copay category (e.g. 20% copay) it falls under.
    I called the Physiatrist office and she was helpful but not very definitive. She seemed to think it would be about $180 copay with Medicare. That's not so bad. We can handle low hundreds, but not thousands every year.
    Depending on what they do (refill or adjustment) your 20% copay may be approximately $30 to $50 as an original Medicare patient.

  2. #302

    baclofen pump

    Looking for those you have a pump and their thoughts on if it has been worth it? How has it improved your quality of life? How it actually looks under the skin? Who have had problems with procedure and/or after? How long have you had the pump and what level of injury do you have?
    Scheduled for March 5th and as always worried?

  3. #303
    I am moving this thread to our Care Forum. I decided against getting the pump because I was concerned about potential malfunctions.
    The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
    --General George Patton

    Complex problems need to be solved collectively.
    ––Paul Nussbaum
    usc87.blogspot.com

  4. #304
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    Quote Originally Posted by new dimension View Post
    Looking for those you have a pump and their thoughts on if it has been worth it? How has it improved your quality of life? How it actually looks under the skin? Who have had problems with procedure and/or after? How long have you had the pump and what level of injury do you have?
    Scheduled for March 5th and as always worried?
    some like it i did to for awhile then it got a kink in catherea but they did not find for 3 yrs
    it almost killed me

    if if it had stayed working heaven yes but now i am to scared but it was great

    if that makes sense

  5. #305
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    Bacelfin pump...is it right for you?

    I think the pump implant is sort of like a knee or hip replacement. Nobody really wants to have it done unless ones condition becomes so unbearable that you can't live with out it. For me, my muscle spasms got so intense that it was affecting many areas of my quality of life. For example, I couldn't allow my body to fully extend - like laying flat in bed, because my back & leg muscle would contract so intensely that it would cause serious AD--autonomic dysreflexia, so always had to keep in fetal position. Had to devise all kinds of restraint systems & had exceeded safe limits on oral spasm medication. I really reached a point where I thought I just could not go on. The pump dramatically changed all that for me. I am now 7 years post implant & am a few months away from having another replacement pump installed since my battery life is about up on my 1st unit. Yes, there is the possibility that something can go wrong with the pump so you have to look at the present data including the best places to get it done. My was installed at Stanford Medical by Jamie Henderson & I would have it refilled every 6 months....

  6. #306
    Senior Member zagam's Avatar
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    Defective cyborg

    They need to be monitored as though it provides relief you develop both resistance and dependence. If it fails to deliver for any reason then this can be a medical emergency (hyperthermia and rhabdomyolysis). Delivering it to where its needed though is better tolerated.

    http://blogs.gnome.org/gnomg/2012/01/
    http://www.youtube.com/watch?v=5XDTQLa3NjE
    (Sorry can only find youtube which I can't play.)
    http://www.techrepublic.com/blog/aus...nds-source/577
    http://media.cnetnetworks.com.au/aud...012-ep3-01.mp3
    (Audio content is in a plain URL.)

    I get funny spaz that's painful so I manage with painkillers. Some times I go beetroot colour or blotchy and sweat including headache, etc. Some times removing clothing and ice, water or both is enough. Painkillers work, but they take time.

    Low SCI should not get AD, so bad elsewhere, something else or am I a defective cyborg too?

    I was on all sorts of nasties for pain from pain specialist. Now opioid does it and need has not increased.
    Last edited by zagam; 02-27-2013 at 11:57 AM. Reason: bad link

  7. #307
    Senior Member Axle's Avatar
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    Quote Originally Posted by Kevin Giblin View Post
    I really reached a point where I thought I just could not go on. The pump dramatically changed all that for me.
    What dosage and how long did it take to find the right dosage? Turning it up too much too quickly leaves me sleepy for weeks.

  8. #308
    Those of you wondering if it improves your quality of life, I couldn't live without it. My spasms before I got it or so bad that whenever I would hit a bump my body would straighten out and outside down in my chair. If I got rubbed in my legs or just moved just right my legs would kick up out of the chair. Sometimes lifting my arms to push would even cause spasms. They would hit my obliques (muscles on the sides of my abdomen) and pull me over to the point where I couldn't get back up. Six years ago, after a replacement, the replacement site got infected and I had to have the pump removed for a month. My spasms were so bad I physically couldn't get out of bed without spasming so hard it would knock me out of my sling or I would hurt a caregiver. I stayed in the hospital after it was removed because of that plus the withdrawal from baclofen, which gave me crazy hallucinations. If you're taking over 80 mg of baclofen a day you're taking too much. Another great thing about the pump I've noticed is I get a little bibucaine put in it to help bring down my central pain. I notice a big difference whenever I lower my dosage. I posted pictures on here of what it looks like. They typically put it on the side of your abdomen and it sticks out about an inch. Don't let that discourage you from getting it. Trust me, it's worth It If you can't get your spasms or pain to a safe level. Have them do a test dosage to see how you like it. It's fully adjustable and can be set up did you boluses at certain times of the day when you're spasms are the worst. I get most of my dosage through boluses and I also have a continuous stream being pumped.
    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.

  9. #309
    The restrictions after implantation are no lifing, bending, twisting for 6 weeks, especially the first three weeks. Get help with transfers and care so you don't have to do this. If you do this then your pump and tubing will be fine. Increases (titrating) can be done every other day or every day till you get to eh right dose and then you can have adjustments specifcs to your needs i.e. if you need more during the night etc...
    You will be given refill apointments before the reservoir gets low and the pump alarms.
    CWO

  10. #310

    pump installed

    Yesterday was the day...had some what I think are typical hiccups, delays, some AD after from bladder fullness as it was relieved quickly with cathing. Tough night in the hospital fighting, over heating and the.chills from one moment to the next. The relief from spasms is unbelievable...they are gone from the lower torso. Very hard to believe after 5 years of spasms that I had to fight with all my.might as a care taker making even. daily tasks a challenge and dangerous. So far no spinal headache thank God! Praying.for life changing results....although we tried to use the spasms in positive ways towards recovery we were truely beaten down. Praying the benefits outway the risks!

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