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Thread: Baclofen pump problems and questions

  1. #31
    Sometimes people get confused about the difference between 'tone' and 'spasms' - here's a link to an answer Wise gave which explains the difference pretty well - maybe this will help answers some of the questions raised here.

    http://sci.rutgers.edu/forum/showthr...ht=tone+spasms
    _____________

  2. #32
    Quote Originally Posted by lila2008
    I feel so bad that this has happened to you. I have to tell you that these pumps can really work wonders if managed properly. Can you tell me where you live. I can try to get help for you as soon as i can. I cannot imagine that pain your going through..

    Lila
    Lila, Is is possible for you to 'introduce; yourself to the community a little more? Your profile doesn't really give any information about yourself. Offering personal help and asking for information about where someone lives might be viewed as a little intrusive from a brand new member. Thanks!
    _____________

  3. #33
    Rybread,

    Thanks for the reply. It took losing ALL tone/spasticity and ending up in the ER w/a dx of ITB OD for my PM&R to admit that something may be wrong mechanically! I knew there was a delivery problem the first week of this, now almost 3 weeks later.... Beyond the point of frustrating.....
    *Serendipity*

  4. #34
    Junior Member
    Join Date
    Nov 2008
    Location
    Poughkeepsie, New York
    Posts
    1

    Unhappy Baclofen Pumps

    Just by chance, I happened upon this website regarding baclofen pumps. I was diagnosed with MS in 2006. Since that time, I have had horrible experiences with spasticity and/or spasms, which have required hospitalization. The first time it was for three weeks. The third week I was transferred to a physical rehabilitation hospital. Being away from my family that long was difficult, especially because my son, 17 years old, has a disabillity and his care became the responsibility of my daughter (then 17) and my husband, who already works 6 days a week because I can't work. Anyway, my neurologist has suggested, for the second time, to be evaluated by a neurosurgeon for a baclofen pump.

    I found this site by chance. I have found the comments on the pump quite interesting. I had no idea of the possible problems the pump can cause and those who have had good experiences with the pump; the bad seem to outway the good.

    I'm getting concerned now about having the pump put in. It sounds as though the pump is more trouble than the spasms/spasticity. I'm actually quite scared to have it put in now. Afraid of the complications shared, the problems with the catheter, not knowing what dosage to administer, etc. My spasms can keep me in bed for days/weeks at a time. having to use valium on a daily basis is difficult for me. It affects me greatly regarding drowsiness, along with 80mg of oral baclofen and other meds used to treat my MS. I hate not being able to do the things I used to as a stay-at-home mom. I hate that I have so much difficulty doing housework or cooking meals. I don't know which way to go after having read the problems posted on this site. Are there any good things I can count on with the pump? Is it better for me to just deal with the spasms and accept this is what MS does to some?

    I'd love to read/hear about the good side of having this pump.

    Thank you.
    Catherine
    Last edited by Justone; 11-19-2008 at 04:21 PM. Reason: spelling/grammer

  5. #35
    Quote Originally Posted by Justone View Post
    Just by chance, I happened upon this website regarding baclofen pumps. I was diagnosed with MS in 2006. Since that time, I have had horrible experiences with spasticity and/or spasms, which have required hospitalization. The first time it was for three weeks. The third week I was transferred to a physical rehabilitation hospital. Being away from my family that long was difficult, especially because my son, 17 years old, has a disabillity and his care became the responsibility of my daughter (then 17) and my husband, who already works 6 days a week because I can't work. Anyway, my neurologist has suggested, for the second time, to be evaluated by a neurosurgeon for a baclofen pump.

    I found this site by chance. I have found the comments on the pump quite interesting. I had no idea of the possible problems the pump can cause and those who have had good experiences with the pump; the bad seem to outway the good.

    I'm getting concerned now about having the pump put in. It sounds as though the pump is more trouble than the spasms/spasticity. I'm actually quite scared to have it put in now. Afraid of the complications shared, the problems with the catheter, not knowing what dosage to administer, etc. My spasms can keep me in bed for days/weeks at a time. having to use valium on a daily basis is difficult for me. It affects me greatly regarding drowsiness, along with 80mg of oral baclofen and other meds used to treat my MS. I hate not being able to do the things I used to as a stay-at-home mom. I hate that I have so much difficulty doing housework or cooking meals. I don't know which way to go after having read the problems posted on this site. Are there any good things I can count on with the pump? Is it better for me to just deal with the spasms and accept this is what MS does to some?

    I'd love to read/hear about the good side of having this pump.

    Thank you.
    Catherine
    Please don't let these stories scare you. It's rare that a pump would be bad or that you would have any problems with it at all. I've had really good luck with my pumps with the exception of one incision getting infected, but that had nothing to do with the pump itself, and I believe they have literally saved my life. Before I had the pump, my spasms were so bad I couldn't do anything without the risk of being pulled out of my chair by muscle spasms in my sides or sliding down in my chair from my back muscles straightening me out. Not to mention all the possibilities of drugs they can put in the pump to help you with pain. Check out the thread Baclofen Pump FAQ. There is all sorts of information about the pump and what goes into getting it. Go for your test dose and see what difference it makes, after that, I'm sure you'll be sold on it.
    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.

  6. #36
    Senior Member
    Join Date
    Mar 2006
    Location
    connecticut
    Posts
    8,272
    The complications are quite rare. Mine was very staightforward. One thing that I find interesting, is even the few people who have had complications that I know of, still say how wonderful it is.
    T7-8 since Feb 2005

  7. #37
    I would say that you have done your homework and then some. It is good to see both sides of the issue. However, you don't even know whether or not you will respond well to this method of medication delivery.

    The people that I have known that had it have been very satisfied with the impact that it had on their lives..... the lower dose of baclofen made them feel much better. They felt that their spasticity was better controlled and overall believed that it was worth it. They all had the test dose first - and knew what to expected (to an extent). They also had PT and OT set up so that hey could really maximize the difference that the drug made.

    If you have concerns ( and it certainly does sound as though you do), write them down. Ask your physician for as much information as he can give you. And don't keep asking until you are satisfied one way or another.

    I would encourage you to continue to find out more about it. It does sound as though your spasticity is interfering quite a bit and that you don't tolerate the oral medication doses that you need to minimally impact it.

    I hope that this helps.
    CKF

  8. #38
    Im 26 i am complete t8 for five years. My spasms are so/so. My dr said i should consider the baclofen pump. For spasms i take baclofen, clonidine patch and diazepam. Any thoughts ????

  9. #39
    Quote Originally Posted by lila2008 View Post
    I feel so bad that this has happened to you. I have to tell you that these pumps can really work wonders if managed properly. Can you tell me where you live. I can try to get help for you as soon as i can. I cannot imagine that pain your going through..

    Lila
    The doctors will test the pump and always say its working fine when they force the medicine through the catheter it was the only time I got relief. I ask them to maybe move the catheter to another position and they would always say noting is wrong well my body told me different. I had to let it run out of meds or I could die from a massive dose of medicine from the pump I got about 1 day a month. I have to take pain medicine prescribed from another doctor because they didn’t believe the pump wasn’t controlling my pain and spasms. Most doctors all they care about is we aren’t going to prescribe pain meds. The pump doctors were so wrong. I can’t seem to find help; my last pump doctor has in my records im a junkie. I have to wait till he dies or keep him out the new pump doctor’s hands. My Doctor has me on pain meds since? About 4 yrs now. Its all I have till I can find a pump doctor that believes me instead of a bipolar nut that didn’t care when I ask. Jeff

  10. #40
    I am very impressed with this website. I am a provider (Physiatry NP)who sees Baclofen pump patients in a Rehab clinic setting. This is such a helpful site to make me a better provider. I appreciate the honesty and candor of all the participants.

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