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    Baclofen pumps

    I posted this at the New Mobility message board, but also wanted feeback from this site. I have been having terrible contractures in my right leg for over a year now. I originally saw a Dr down at the UM school of medicine and he put me through every test in the book (ultrasound on my legs; bone scan; x-ray; MRI...) but did not find anything unusual. I came up to Palm Beach to see my physiatrist who treated me right after my injury and he did botox injections. The very 1st time I did them, they worked great. I went in 6 months later and had them again, but didn't work. Sooo, last week, I had phenol nerve blocks done. The first night everything was good, no pulling. Over the past days, however, they have gradually gotten worse and worse. I can't sleep; I take so much medication to relax my leg, I'm suprised my heart doesn't stop, as well. My Dr said I may want to consider a Baclofen pump, but I don't like the idea of another surgery, then a big bulge in my stomach. I know people have had excellent results w/this, but what do you all think? I'm so frusterated w/this! I stretch 2x/day in addition to standing. I take Soma, Flexeril, and Valium -- they work, but only very breifly. I wake up in the middle of the night w/my leg "flapping" trying to draw up. It's sporadically pulling even while I sit.

    ANY input from you guys would be fantastic.

    Thanks in advance [img]/forum/images/smilies/smile.gif[/img]

    Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children -- Kahlil Gibran

    #2
    Andrea,

    It seems to be a shame to have to go to the baclofen pump to control the contractures of one leg. If the problem is isolated to a particular group which sounds like the case, you may want to consider orthopedic surgery to lengthen the tendon for that muscle. This way, there is less tension on the muscle and it does not respond with as much spasticity and contractures. Have your doctors at UM discussed this possibility with you? It is relatively standard procedure that they use in children with spasticity.

    Baclofen pumps are good for more generalized spasticity of both limbs. Thousands of people have gotten these pumps and the more experienced groups now have relatively few complications. Since you have already tried botox and phenol injections, I think that you have gone as far on the path of nerve blocks as would be advisable.

    Wise.

    Comment


      #3
      Dear Dr Young ~ Thank you for the reply. What you say makes a lot of sense! No, nobody ever mentioned orthopaedic surgery to lengthen the tendon, however, I have heard from people from my previous post (on New Mobility) to stay away from any surgery where the tendons will be cut. My Dr at UM was convinced that there MUST be a cause making my leg contract, i.e. fracture, blood clot, etc. There was no underlying cause, it just was. He also ordered PT, and I did that for awhile, but it wasn't helping & I didn't have the time, anyway. I will discuss the prospect of surgery w/my physiatrist as soon as I can get ahold of him.

      In the interim, is there any *other* medication that is more effective than the kind I am currently taking? I am beyond miserable -- it's like waiting to be poked w/an electric cattle prod.

      Thanks for your time & help [img]/forum/images/smilies/smile.gif[/img]

      Andrea

      Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children -- Kahlil Gibran

      Comment


        #4
        Dr Young ~ another question I wanted to ask you. Is the tendon lengthening a big deal, or could it be done, say, outpatient or during a long weekend? Other than now, I have no free time for the rest of my life as it seems now!

        Thanks again,
        Andrea

        Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children -- Kahlil Gibran

        Comment


          #5
          Andrea, tendon lengthening does involve cutting the tendon. The tendon is split along the middle, the two halves are cut at some distance from each other, and the surgeon then slides the two half tendons along each other, sutures them together, and they should heal together, giving a longer tendon. It has been a long time since I have seen this procedure but you would probably need a cast on the leg for a while until the tendons heal.

          The advantage of such a procedure is that it relieves the tension of the muscle without drugs. Without tension, the spasticity tends to be less. I personally believe that this is better than botox or phenol nerve blocks, both of which damage the nerves.

          Wise.

          Comment


            #6
            Andrea,

            I posted about knee contracture in the care forum a couple of months ago. The longer your knee(s) stay bent (from sitting all day) the more likely you'll develop permanent contracture which results in not being able to straighten your legs at all because the tendon has shortened. The best thing you can do and what I wish someone had done for me, is get leg rests for your chair and keep your legs straightened out as much as possible for as long as possible during the day and sleep either on your stomach or back so that they can remain straight at night. I'd suggest knee braces for the spasming so that your knees won't be able to bend even as the muscles try to draw them up.

            As far as botox, I read that there's a new formula available which is longer lasting with fewer side effects.

            The only option left for me after 20 years of 35 degree contracture in both knees is tendon cutting which bring all the risks of surgery as well as inconsistent results.

            Comment


              #7
              I got ahold of my Dr this morning and am meeting w/him tomorrow. I will mention the tendon lengthening, but I would choose that route only as a last resort. I HOPE HOPE HOPE there is a slolution he can offer me as the pulling is getting worse and interfering in EVERY aspect of my life, not to mention making me miserable!

              Could they just inject some baclofen straight into my spine for at least some temporary releif?

              Keep me away from the wisdom that does not cry, the philosophy which does not laugh and the greatness which does not bow before children -- Kahlil Gibran

              Comment


                #8
                Glad you got the word

                from Dr. Wise. I was wondering about those contractures when you asked about the pump. My spasms are general spasms not specific to one limb. That's why it works so well for me. Hope you find your answer.

                BTW, I am infomonger on the NM. [img]/forum/images/smilies/biggrin.gif[/img] [img]/forum/images/smilies/wink.gif[/img]

                "And so it begins."
                "And so it begins."

                Comment


                  #9
                  Question for Dr. Young

                  Thanks for all the good information. My Mom has serious knee contracture after 10 years of incomplete C5/C6 lesion.

                  Dr. Young, you mention the "experienced groups now have relatively few complications". Could you please tell us what some of the well known groups for the baclofen pump are? Especially in the midwest.

                  Comment


                    #10
                    I had hella tone until I got mines pump in 98. It ownz me, YO. They thought of BOTOX for a playa, but they said, "Yo, kid. Your hip muscles be too strong for botox, and it is $$$$. Plus, you'd have to pay for it." I sucked ip up fo a minute, then went under fo da cut. All good. A neurosurgeon did mines; don't let just any old doc do it. Now, mines cath. did fail, but he put a new one in and said he was doing them differently and it will stay fa sho jigga mang. I belee there puttin them under the muscle now so it doesn't show as much, don't quote me on dat dough. I get mines refilt eRRy 120 days/4 months. They have neva missed hitting da refill port. To be hones, da TRIAL fo da pump hurt like Hell. I would ratha take a pineapple enema dan do dat again. Sorry bout dat.
                    Cliff Notes-- Get da damn pump; u b coo wifout fail!!!



                    My phat site (Not SCI related)

                    Comment


                      #11
                      Rush

                      I would certainly consider Rush-Presbyteria-St. Luke's hospital in Chicago for a baclofen pump. They were one of the original research centers doing these in the USA, so have many years of experience both with MS and SCI. I believe that Northwestern Hospital in Chicago (affiliated with Rehab Institute of Chicago) also is a major center.

                      Comment


                        #12
                        OTH, Combined with DA, you will change the English language for the coming century. I love the way you describe things and it is right on the button.

                        Andrea,

                        Baclofen pumps have been placed in over 20,000 people since the early 1990's. Failures and complications have declined steadily. Because they test out the catheter before installing the pump, the incidence of bad catheter placement has decreased significantly even since 1998.

                        There are two classes of complications associated with baclofen pumps. The first class of complications are related to mechanical failure of the pump. These are now very rare. The second class are due to effects of the drug. If you want to read about them, here is a good link:
                        http://nyneurosurgery.org/cfr/child/...plications.htm

                        The advantages of the baclofen pump are as follows:
                        1. It reduces the exposure of the rest of the your brain and body to the drug.
                        2. It delivers a higher concentration of the drug to where it is required.
                        3. Except for refills every several months, it is almost completely care-free.
                        4. It is reversible.
                        5. It has a strong and good safety record.
                        6. Finally, it works.

                        If you want to read details of the operative procedure and complications, you can find a description at http://uscneurosurgery.com/operating...fen%20pump.htm

                        Wise.

                        Comment


                          #13
                          I would encourage all of you considering the baclofen pump to get a good look at it, how it will be placed under the skin and how often it must be maintained.

                          I opted against the pump, at least for now, because I had a really bad experience w/the spinal tap/baclofen injection effects on me. I've had my medication adjusted, and so far, it has improved my life (& sleep!) about 99 percent!

                          That is just my opionion. Make sure you get ALL the info and actually SEE what you will be dealing w/before going ahead w/it.

                          Good luck.
                          Andrea

                          Comment


                            #14
                            TIRR has a whole pump team with a very well standardized protocol for preparing and assessing patients before placing the pump. There was a pdf document from TIRR describing the procedure but it is unfortunately no longer there and so I just retrieved a
                            stored copy of the paper on Google

                            Comment


                              #15
                              Your correct as usual KLD

                              KLD writes

                              "Rush

                              I would certainly consider Rush-Presbyteria-St. Luke's hospital in Chicago for a baclofen pump. They were one of the original research centers doing these in the USA, so have many years of experience both with MS and SCI. I believe that Northwestern Hospital in Chicago (affiliated with Rehab Institute of Chicago) also is a major center."
                              --------------------------------------------------------------------------------
                              Dr Richard Penn a pioneer in baclofen pumps has moved back to Chicago from NY. He was at Rush but now he is at the Univ. Of Chicago hospitals.

                              I get refilled at RIC , Top notch staff!!!!!

                              My first pump put in by Dr. Penn had the new larger experimental cathether(1995). I was part of a research program for the new cath. Still working great after 2nd pump installed in 4/00.

                              Dr. Penn is working on growth factors to help cure many neurological diseases, like Wise Young, he is truly one of the "good guys"

                              John/Chicago

                              [This message was edited by The Human Cannonball on Mar 07, 2002 at 01:48 PM.]

                              [This message was edited by The Human Cannonball on Mar 07, 2002 at 01:55 PM.]

                              [This message was edited by The Human Cannonball on Mar 07, 2002 at 01:57 PM.]

                              [This message was edited by The Human Cannonball on Mar 07, 2002 at 01:58 PM.]

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