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  • #16
    Baclofen pump

    I would like to add a short response. Prior to getting my baclofen pump, of course I was on oral baclofen and found out that oral baclofen destroys your liver. I was upset not having been told this information before I was on it for several years.

    I am very pleased with the baclofen pump, I just wish they lasted for more than five or six years.


    Chari

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    • #17
      Originally posted by Chari
      I would like to add a short response. Prior to getting my baclofen pump, of course I was on oral baclofen and found out that oral baclofen destroys your liver. I was upset not having been told this information before I was on it for several years.

      I am very pleased with the baclofen pump, I just wish they lasted for more than five or six years.


      Chari
      I asked a question here recently about the effects of baclofen on the liver. According to Dr. Wise, baclofen "is not known to be hepatotoxic or renal toxic at 120 mg/day". Who told you that oral baclofen destroys the liver?

      Another question for those who've had the pump for a while. Does having the pump restrict your range of movement at all? If you twist around a lot or are very active, is the catheter more likely to slip out of the spine?
      Last edited by Lazlo; 08-09-2008, 01:58 AM.

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      • #18
        Originally posted by knowthill
        I take a small dose of oral Baclofen for just this reason. By small I take 10mg at 6:00am 10mg at 2:00pm and 20mg at 10:00pm. I need more at night too because of more activity at night. This oral dose lets me to always have fresh Baclofen and a prescription to use incase of a malfunction.
        They can have it deliver bolous amouts any time in any amount to get you off orall dose at bedtme or whenever
        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.

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        • #19
          Originally posted by tigger74
          How long have you had this pump? Does it stick out a lot on your side? Any problems with it yet?
          Hi,

          So far the Codman pump has been fine, and is not noticeably bigger than the Medtronic pump.

          I have not found any of the pumps restrict my movement, however, if you have sensory sparing, the pump may make sleeping on the same side as the pump is implanted a little uncomfortable, but you do get used to it.

          In the UK, these pumps, Medtronic and Codman and the refills are fitted and maintained for free under the NHS.

          Regards

          Simon

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          • #20
            Ohhhhhhhhhhhh,,,,,,,
            The pump, I have a Meditronic, it does stick out some, it does get in the way if you can bend over, but,,, it does help, and it is easier than taking oral Baclofin. I've turned mine down {had it done} as low as I can go. Believe me I know it, it is a double edged sword, more strength, more spasticity. I'm on the edge right now, my goal is to come off of it someday, today is not the day. It's made me progress the way I am today I can't really get that mad at it.

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            • #21
              Originally posted by rybread
              I have mine placed at C-4.
              I could be wrong, but I think you mean T-4. At C-4 the baclofen would interfere with your respiration. I've heard of them placing catheters as high as T-4, but never to the cervical level.

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              • #22
                Question on the Codman pump: How is the dose adjusted? It sounds like it has no electronics at all.

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                • #23
                  I'm actually on my third pump! The first one was implanted circa 1999. Had it for about five years until the battery needed to be replaced. That's five years of spasm free bliss. The second one went in without a hitch but was recalled by Medtronic about a year later. It really stunk having to have surgery after it was literally just done but the upside was that I got the new redesigned, super special awesome model.
                  I'm getting a little cocktail of baclofen and ketamine and my spasms and pain are no longer things to control whatever physical life I currently have here.

                  The baclofen pump was nothing short of a miracle for me. The Pump and the super pubic catheter both changed my life when I first got them.

                  I would recommend it to everyone.
                  Steve C.
                  S. Florida
                  www.sjcaputo.com
                  www.facebook.com/caputo.steven
                  www.gofundme.com/StandforSteve

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                  • #24
                    I have had my pump now for a year come Oct. 31st I am at 543.5 micro grams/day and ready to start turning it down. I have noticed a lot of pain in my right leg (my weak side) as I tire my foot wants to turn outward, thus causing my hip to hurt. I had broke my ankle 8 yrs ago and had 2 screws put in to hold it(may be part of the reason for the drop foot). It never bothered me until my sci and now I can barley stand the pain when I go to step down, this goes away after being on it for a while. I have a recumbent bike that I use daily and I try to stay active to keep the swelling down. My legs are stiff as hell since my last increase but this may be due to the change of weather.
                    my questions are these:
                    1) Will the pain I am having subside as the Baclofen is decreased?
                    2) Will the spasms be as bad as before as I decrease?
                    3) Will I have more energy/stamina to to do more things?
                    Thank you for any and all responses

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                    • #25
                      Are you turning it down hoping you will have more control of the ankle?

                      Otherwise I am confused, since your legs are still so stiff.
                      T7-8 since Feb 2005

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                      • #26
                        I have got to the point that I have very few spasms (a few during the night). I don't want to get to much going in case it causes problems with my walking (I drag my foot more as my dosage increases). Plus I would like to see if I have more energy.

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                        • #27
                          You have very few spasms because the pump is working. If you want to have more spasms or you need more tone, you can turn it down a little bit. At your dosage, so long as it was brought up to that level in smaller increments at a time, I really doubt it's draining your energy that much. I get roughly 1600 mcg a day, sometimes 300 mcg are given to me in a matter of minutes, but I'm still awake all day and typically can't sleep at night. I hope this is helping you.. And of course, I have no idea what it's like to be able to walk with one of these. I've had mine for over six years now, had it replaced, get infected, removed for a month (talk about horrible spasms) and put back in. I would never be able to go without it at this point. Is baclofen the only drug that's in there?
                          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.

                          Comment


                          • #28
                            Originally posted by rybread View Post
                            You have very few spasms because the pump is working. If you want to have more spasms or you need more tone, you can turn it down a little bit. At your dosage, so long as it was brought up to that level in smaller increments at a time, I really doubt it's draining your energy that much. I get roughly 1600 mcg a day, sometimes 300 mcg are given to me in a matter of minutes, but I'm still awake all day and typically can't sleep at night. I hope this is helping you.. And of course, I have no idea what it's like to be able to walk with one of these. I've had mine for over six years now, had it replaced, get infected, removed for a month (talk about horrible spasms) and put back in. I would never be able to go without it at this point. Is baclofen the only drug that's in there?
                            The whole Idea of having the pump put in was to help with the spasms and the spasticity, I know that some spasms are required to maintain tone. but if I have less tone isn't that taking away from my endurance?
                            I don't sleep well at night any more either not sure if it is the pump or if it is the call of nature every 2 hours. I go to bed at 11:00 PM and 12:30 I am up to pee and then around 3:00 and then 5:30 again.These are the hours that I end up having my spasms. I take a 5mg of Diazepam at bedtime to help me sleep but it is rather useless. Baclofen is all I take in my pump.
                            The nurse at the Dr's office that is in charge of my pump is the one that is talking about lowering my dosage and explained that she had one patient that ended up having to much Baclofen and found himself unable to walk I don't want to go through that, even if it is a short term thing till they would be able to drop the dosage. I have been able to walk around 400ft now with the assistance of my cane. I would hate to lose that progress.
                            I recall a member on this board that used to get on here and try to get ppl to decrease there dosage and he swore it did better for him

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                            • #29
                              I'm scheduled for my test dose in two weeks. What can I expect?

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                              • #30
                                The Dr. that did my test was pretty cool he said that I would feel a pinch as he inserted the needle (he lied, it was more than a pinch) I had physical therapy come in and evaluate my spasticity every two hours (I felt the difference after about the third hour) then the spinal head ache hit (that is a bitch). have potato chips and Mt. Dew to help with it, (salt and caffine) and be prepared to lay flat for a while. I was fortunate to get my pump put in two days later and with my heart condition they just kept me there till after I was done with surgery and then I came home as out patient.
                                Good luck and I hope it works out with you it did me.

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