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    Baclofen Pump



    I have a baclofen pump for my extreme spasms. What are the other alternatives to a baclofen pump? I experience some problems during the pump surgeries so I'd like to find something else.

    #2
    I am moving this to the Care forum where you are more likely to get responses from others who have a baclofen pump.

    (KLD)
    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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      #3
      Baclofen Pump

      Sachad:
      I am assuming that since you had the pump surgery, your spasms are fairly severe. With that assumption, you could go back to oral medications, try botox injections, epidurals and also do intensive range of motion. It is important to ask yourself what can you live with? If your spasms are so severe that they are uncomfortable, the pump may be the best choice for you now.

      You also didn't tell us how long you have been injured. Overtime, spasticty seems to plateau out and even decrease a little.

      CKF

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        #4
        A couple of questions:
        Is the pump providing relief?
        What are the problems related to surgery?

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          #5
          Problems

          Originally posted by Ben Rolfe
          A couple of questions:
          Is the pump providing relief?
          What are the problems related to surgery?
          Yes the pump is providing some relief.

          The butcher, Sam Ciricello (sp?), who did the surgery the 1st two times did not notice my spinal fluid leaking. My spinal fluid was funneling into my abdomen the first time which was attributed to the famous "female problem." The 2nd time it was just squirting out my sugery site for two weeks before a nurse noticed this. It was only later that I found out that Ciricello only practices on children at Davis and Shriners.

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            #6
            Injury Date

            I've been injured for 8 years. No decrease though.

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              #7
              hi sachad, it sounds like you have a doctor problem, not a pump problem. I've had one since they first came out...I'm on my third, have put off getting my fourth, as I hate hospitals.

              I've had some problems with the catheter breaking and such, but without it, I am a floppin' out of control fool with no life. It really made my life livable.

              Best of luck, and if you get knowledgeable doctors, I don't see any problems...especially if you're gettin help from it.
              Please donate a dollar a day at http://justadollarplease.org.
              Copy and paste this message to the bottom of your signature.

              Thanks!

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                #8
                baclofen pump a "godsend" for my brother

                My brother is on his second month of having his baclofen pump placed. I wasn't aware that this surgery was so major as to incision size and such until he had it put in. I almost freaked out when I saw that front scar. Don't know what I thought a pump in your side would look like, but that scar was big and bad looking.
                I encouraged his getting this pump until he relented and did it and he's been glad ever since. His legs were badly scissoring and having muscle spasms even though he was on oral baclofen and vallium and no telling what else for his pain and spasms. I personally am favorable to this pump, but am also glad that I've read your message about the problems occuring. I have read about problems with this pump, but all info indicates that the benefits outweigh the obstacles. One girl had written that her pump "malfunctioned" and it took them months to find the problem. She started jerking uncontrollably and flopping around in her bed like a fish (she said). I cannot image how she must have felt. She kept going back to her doctor and he kept looking and telling her he couldn't see any problem. Finally, they found some little something (BIG something to her, I'm sure) wrong with that pump, fixed it, and she was good as new.
                I dread pump problems, but maybe the good Lord will not put that trial on me and my brother. I certainly hope not.
                But it is an invasive piece of machinery and it is placed in the body, and being a man made mechanism, it's gonna malfunction from time to time I suppose, causing serious problems for the poor host. Man, that's gotta hurt, too.
                I was glad to hear the other options to this pump, should it become to burdensom to continue with. As for now, it's a definite go. Sorry about your problems w/your doctor. We've had a few of those too. Sometimes I wonder where some of those medical professionals come from.
                Good Luck
                Vickie

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                  #9
                  Pump

                  My first pump developed a seroma and I looked 6 months pregnant on one side of my tummy. They removed and found it had never had been hooked up to the catheter properly. Always investigate any problems with a pump and don't let your doc tell you its just fluid in the pocket, normal for surgery.

                  Jani

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                    #10
                    Pump

                    My Steven is on his second pump. The surgery with the first pump went just fine, no problems. The second surgery, (he had just 3 weeks ago) was a nightmare, they gave him to much baclofen, that mixed with the anesthesia made him crash. It took them the entire day and into the night to get his vitals back to normal, at one point they almost intibated him because of his breathing. As the Anesthesia and the overdose of baclofen wore off he got much better. A 30 minute surgery and 6 hour stay in outpatient turned out to be a 4 day stay in the hospital. All is well now and he is recovering just fine.

                    The pump has been a godsend to him. Without it, his spasms were horrible. He wouldn't be without it now.

                    I really feel like you need to find a different doctor.



                    Heather: significant other and primary caregiver to steven c-4,5 and 6 , 20 years post injury

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                      #11
                      sorry to hear all these horror stories.

                      i tried botox...NOTHING.

                      went for the pump, it got infected an almost cost me my life. he told me once i got well he could put it back in on the other side, HAHAHA.

                      i don't have any options for ya other than the usual oral baclofen. figure i'll just live spastic.

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                        #12
                        Altenative to Baclofen

                        I suffered with worst spasms imaginable. They made my life hell. At times the spasms were so powerful and painful I had to be strapped down with belts on my bed at night so that my legs would not get knotted together.
                        But, by sheer chance I was prescribed Tramal for the pain and I noticed when I took this tablet the spasms seemed to lessen. I started experimenting with Tramal and I found there was a slow release 100mg that I started taking 3 times a day completely stopped my spasms. It was as though all my prayers had been answered. Baclofen did absolutely nothing for the spasms, I was taking 100mg a day and that did nothing for me.
                        Tramal has made such a difference to my life in that it has stopped the spasms and takes the edge of my nerve pain.

                        Comment


                          #13
                          Originally posted by jmarie
                          I suffered with worst spasms imaginable. They made my life hell. At times the spasms were so powerful and painful I had to be strapped down with belts on my bed at night so that my legs would not get knotted together.
                          But, by sheer chance I was prescribed Tramal for the pain and I noticed when I took this tablet the spasms seemed to lessen. I started experimenting with Tramal and I found there was a slow release 100mg that I started taking 3 times a day completely stopped my spasms. It was as though all my prayers had been answered. Baclofen did absolutely nothing for the spasms, I was taking 100mg a day and that did nothing for me.
                          Tramal has made such a difference to my life in that it has stopped the spasms and takes the edge of my nerve pain.
                          jmarie,

                          Tramal contains Tramadol which activate the mu, delta, and kappa opioid receptors. It is a synthetic analog of codeine, a commonly used analgesic. Also called ultram, studies of tramadol suggest that its opioid activity is 6000 times less than morphine and that it inhibits reuptake of norepinephrine and serotonin ([url=http://opioids.com/tramadol/index.html]Source[/ur]). Its opioid activity accounts for only part of its effect on pain. Several studies suggest that, unlike other drugs of its class, people do not seem to accomodate to the drug (i.e. require higher doses over time) and dependence or abuse of the drug is less than for other opioids.

                          It is very interesting to hear that it has been so effective for stopping spasms for you. The only other drugs that I have heard of that has this effect on spasms is neurontin (gabapentin).

                          Wise.

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                            #14
                            baclofen pump

                            I have been injured for 8 years. This is my second baclofen pump, third time i had the surgery. This time they just replaced the cather tube. I am still having spasms and have to take the medication 40mg tid. My question is there anyway the pump could make my stomach look like i am pregnant because the medicine is going somewhere near there?

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                              #15
                              I've had a pump in for 4 yrs now and I've been turning it down over the last 2 years. At present I'm at about 100ugms a day. As I've turned it down, I've been increasing physical excercise. I mean everyday I either walk on an elliptical trainer while suspended or ride a stationary bike, etc. (Goin skiing in Sun Valley tomorrow!!)

                              Each time I turn the setting down, I feel new sensations and feel stronger. I've been told that intrathecal baclofen does't inhibit muscle strength or sensation. My own experience is different than that! It is uncomfortable for up to several days, but then you're through it.

                              I feel that I've used the pump as a tool to help with spacticity until I can get strong enough to work my body, get it moving which seems to decrease the spacticity.
                              However, I continue to experience return feelings and movement. Daily. It encourages me to move more.

                              Pat

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