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Pre & Post Baclofen Pump?

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  • Pre & Post Baclofen Pump?

    Hello,

    I have questions for those that have a baclofen pump. After you got the baclofen pump, what types of changes did you see vs. before the baclofen pump? How bad was your tone before the pump vs. after? Did you have to relearn to use your muscles?

    I'm curious - my sister's injury is a C1-C2 central cord syndrome(in Nov 2005), but she functions at a C5/C6 level. She is currently taking zanaflex(12 mg/3 x day), baclofen (5 mg/ 2 x day - she's weaning off this) and datrolene (50 mg / 3 x day) to try to control her tone. It's gotten better, but she still has tone issues - when she tries to get out of bed her legs go straight as a board. She's always fighting her tone - she said it feels like there are kids sitting on her feet when she's trying to walk and a ghost holding her down when she's trying to get out of bed and holding her arms down when she's trying to lift them. She's trying every oral medication combo first before the baclofen pump as a last resort (she has feeling everywhere and gets creeped out with the metal in her hand from injuries in her accident - she really gets creeped out when thinking about the hockey puck in the abdomen!). Her doctor also said it could affect her bladder function since she functions pretty much like an AB (determined via urodynamics). And she would have to relearn to walk since it will affect all of her muscles, etc.

    I'm just wondering what your experience has been pre and post baclofen pump? After reading other's posts re: tone, it doesn't seem like my sister's is that bad, but it does affect her ADLs and she is not to a point where she can be independent. She's talking about the pump but dreading even going that way. If you would, please share your pre baclofen pump experiences (what finally led you to get the pump??) and your post baclofen pump experiences - both good and bad. Thanks much!

    ~Heidi

  • #2
    I know I have already posted a lot about this, so I just searched out some of the threads that are related to that.

    Check these threads out for a start.

    /forum/showthread.php?t=91071&highlight=baclofen+pump

    /forum/showthread.php?t=83891&highlight=pump

    /forum/showthread.php?t=4720&highlight=pump

    /forum/showthread.php?t=88788&highlight=baclofen+pump
    T7-8 since Feb 2005

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    • #3
      well, I haven't masterd this computer stuff out enough to do that so here goes...

      I am still healing after my surgery to have mine put in but this is what I have noticed...

      I had spasms depending on what I did, pulling my drawers up after going to the bathroom..if I was tired, I would have one every time I yawned..if I layed flat I would go through them alot for about a half hour till I fell asleep and in the morning it would be the worst they would end up driving me out of bed...tone was very hi could not open my hand while straightening my wrist..

      now I am spasm free and I can open my hand while I straighten my wrist..I think I started to have a spasm this morning..not for sure it could have been a cramp in my calf trying to happen..

      I am glad as hell that I had my pump put in..I have not been able to sleep for eight hours straight until this last week it has been swweeet to be able to sleep in till 8:00 or so instead of getting 4-5 hours of sleep and getting up at 3:00 in the morning..

      as far as the bladder funtion I just got back from my family Dr. over this issue...I had noticed that I was having problems with feeling like I was full and only voiding 300cc's and that I had to really concetrate on doing that,( I was afraid that I would have to start cthing myself again) it has gone back to normal for the most part..

      as far as learning how to walk again..I haven't had that much reaction to it to miss with my walking..my drop foot is still there,my toes don't curl under like they used to so I can tolerate being on my feet alittle longer nowbut after I am up on my feet for so long my back still hurtsand it forces me to set for a while ...

      I dont think that I will ever be free of my chair but it does make my life alot better so far..

      Comment


      • #4
        Before anyone would consider doing the surgery, they would evaluate your sister to see how much her spasticity interferes with her ADL's. If they believe her to be a candidate, then they would do a trial with her to see if it is an option.

        Most people I know who have had one, did it because the medications they were on were not helping to the degree that they needed or their spasticity was so severe, there was no question in their mind that they needed to do something. It is major surgery, so it has all the risks that any major surgery has.

        If you need more specifics, feel free to ask- I am sure that there are others out there who haven't seen this posting yet, so there will be other information.

        Good luck!
        CKF
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          Here is my thread about getting a pump.

          /forum/showthread.php?t=8007

          I don't have any functional use below level, so I did not have that concern, I just needed to get some relief. The pump has made all the difference for me.
          "a T10, who'd Rather be ridin'; than rollin'"

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          • #6
            McDuff,
            thank you on the keeping a journal info..being new to my pump and getting weened off the oral meds now I am starting to wake up to spasms and was thinking of writing this down but did not start ...I have found a small spiral pad and now have started a journal ..hope this will help to zero in the dosage for me ...
            thanks again, darrel

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            • #7
              Thanks much for your replies! I'll get my sister on here to read them. Amber has an appt w/ the SCI dr in December, so we'll see where it goes from there (still try oral meds, do the pump trial, ...).

              ~Heidi

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              • #8
                good luck, and best of care..please come back to visit and let us know how your sister is doing..

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