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Thread: Baclofen Pump?

  1. #1
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    Baclofen Pump?

    3 yrs post

    C5 - C7 Incomplete

    Brown Sequard Syndrome

    ASIA D

    My left side has probably 90% strength back but my right side is only about 75%. I walk with a cane now and was told by my physical therapist that I wouldn't be able to walk without it because of my spasms.

    My spasms aren't severe, but they are definitely there in my right leg. I am on 30mg of Baclofen 4 times a day, every 4 hours. I don't always take them every 4 hours - At work I am so busy that I forget about taking them until I stand up to walk and realize the spasms are worse. Then I don't always remember to take them when I get back to my desk.

    I've tried Zanaflex with no success at all. I was on it for about 6 weeks and suffered from increased spasms and muscle cramps continuously. I happily went back to Baclofen.

    About 2 months ago my right knee started giving out and I started falling almost weekly. When I saw my physiatrist, he said that my hamstring would spasm and that is what caused my knee to collapse. He also informed me at that time that the forgetfulness, memory and word problems I have been having (and thought must be some kind of brain damage from my injury) were from the high dosage of Baclofen that I am on. My doctor mentioned a baclofen pump as I was walking out the door.

    Since then I have looked into the baclofen pump and I like everything I have read. IT seems like there are a lot of pros and very few cons to having one. I never realized that the extreme lethargy that I experience is due to the oral baclofen and not just part of a spinal cord injury. I work full time and am a single mother of very active twin boys with ADHD. I am usually too wiped out to clean the house, much less have any kind of social life for me and the boys.

    From what I've read, if I were to get the baclofen pump, it would regulate the baclofen, decrease my spasms, I wouldn't have to worry about missing a dose, hopefully decrease the spasms enough that, with more physical therapy, I could walk without the cane, definitely not have to worry about my spasms causing me to fall on my butt in front of everyone, lessen the effects of the baclofen on my brain (btw is there any research on what dosages like mine can do to the brain over a long period of time?), I would get my BRAIN back and not tell my kids things like "Scrape your plate and go jump in the garbage" or "Pick up your toys and put them in the toilet", and I wouldn't be so tired all the time! The surgery and possible problems with the pump itself sure do sound like small issues when contemplating all the good things that could come from it! Are there any side effects that I just haven't read about?

    I would like more information about the actual placing of and recovery after getting the baclofen pump. I've read that it is two incisions - one for the pump in the front and one for the catheter by your spine. Does the catheter go from the pump int the front around your body to the back? I'm not quite sure of how that works. Exactly where is the pump placed? How deep under the skin? How long is the average hospital stay? How long would I need to be out of work? How long before I could start physical therapy? Do you have to refrain from driving at all after the surgery? I am seriously considering the pump and need to figure out what kind of help I would need for the boys and for how long if I were to do this.

    Any help would be appreciated! Thanks!
    Tina
    C5-C7 Walking Quad - Very Incomplete
    Aug '03

  2. #2
    HI Tina,

    If you do a carecure search, you will find a ton of information on the pump. This discussion is about 5 years old but adresses some of what you are asking.

    http://sci.rutgers.edu/forum/archive...p/t-13793.html

    This describes the process:
    http://www.clevelandclinic.org/healt...=4590&src=news

    I hope others with the pump will respond and discuss their experiences.

    AAD

  3. #3
    Senior Member rdf's Avatar
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    Hi tinaMarie, I got my first baclofen pump about a decade ago. I just had my fourth one implanted about a month ago.

    ----

    I've read that it is two incisions - one for the pump in the front and one for the catheter by your spine. True

    Does the catheter go from the pump int the front around your body to the back? yes, but it's all inside of you, nobody can see the catheter

    Exactly where is the pump placed? It can be placed wherever is easiest for you...mostly it's implanted in the abdomen, as in the picture below.

    How deep under the skin? It's just under the top layer of fat, and it's about hockey puck size...see below.

    How long is the average hospital stay? First, you should get a test shot to check out efficacy. That's an in and out deal. If it works well, then the surgery to implant the pump and catheter is also an in and out in one day procedure. I just had one, and the surgery was at 8am. I was home by 3pm.

    How long would I need to be out of work? Everybody is different. I've gone back to work after one day, but your doctor may be different. Mine wanted me to stay home a few days, but I didn't, and didn't have any problems.

    How long before I could start physical therapy? As fast as you feel comfortable, I suppose. The only worry is banging the pump and breaking open the stitches. I'd wait a week until the scar is pretty much healed. They cut in the exact same place each time for me, so I have only one scar in my abdomen...granted, it's getting a lil bigger with each pump

    Do you have to refrain from driving at all after the surgery? Same day as surgery, the hospital doesn't want to let you drive due to anathesea. I drove home, but it's frowned upon. But you should be able to drive the next day.

    Good luck no matter what you decide...
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  4. #4
    I had a pump installed in July. I love it. I hated feeling like a zombie when I was on the oral Baclofen. I was in a fog all the time. It isn't good for your liver either. The one thing you need to know is that you can't just stop taking the oral meds. You have to be weened off of them. They will gradually turn the pump up as they cut down on the oral meds. I was only in the hospital one night for insuranse purposes. I started PT 2 days later.

    Good Luck
    Lowrider

  5. #5
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    I just thought of another question. How do you know when it is time to replace the pump? Does it completely quit working and you have to suffer the spasms without any medication at all? That is a scary thought!


    Lowrider, how long does it take to wean off of oral baclofen? How often do you have to go back for them to adjust the dosage? And why do you have to be weaned off of the oral? Wouldn't it be the same if you are getting it through the pump? Thanks for your help!
    Last edited by TINAMARIE; 10-17-2006 at 08:20 PM.
    Tina
    C5-C7 Walking Quad - Very Incomplete
    Aug '03

  6. #6
    Senior Member rdf's Avatar
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    The pump's good for 5 to 7 years. I think all insurance including medicare will pay for a replacment after 5 years, so you can swap it out before it fails.

    I wasn't on oral baclofen when I got my pump, as I'd tried massive amounts of it and it just didn't do anything for my hellacious spasms, so I don't know about weaning off. But you're getting minute amounts of liquid baclofen through the pump, this should prevent any need for weaning off of oral baclofen. The amount from the pump is very concentrated, very strong, and it goes directly into your spinal cord.

    Lowride, was weadning off of oral your own preference, or did you doctor want you to?

    Good luck to all
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  7. #7
    You need to be weaned off the oral Baclofen because you have the drug in your bloodstream and you can't quit taking it cold turkey. The doctor and the information on the drug will tell you not to just stop taking this drug. You can actually die if you just stop taking it. Even though you are now getting it in the pump, the pump doesn't put it into you bloodstream.

    It takes about 2 weeks to get weaned off the oral meds. The adjustments for the pump are by the individual. I would do good for a couple of days and I would notice an increase in spasms again and need adjustment. I was at Harmarville in Pittsburgh when I got mine so the doctor was checking me everyday. We are all different so you will be different than me. Good Luck

    Lowrider

  8. #8
    I was wondring if someone could answer a question on a pump replacement. it has been almost 7 years since my pump was put in and I am due for a replacement. If you have had it done could you please let me know how it went. My catheter does not need replacing this time around. I have already met with the doctors but would like to discuss it with someone who has already had it done. Thanks

  9. #9
    Senior Member rdf's Avatar
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    Quote Originally Posted by penny7352
    I was wondring if someone could answer a question on a pump replacement. it has been almost 7 years since my pump was put in and I am due for a replacement. If you have had it done could you please let me know how it went. My catheter does not need replacing this time around. I have already met with the doctors but would like to discuss it with someone who has already had it done. Thanks
    Penny, it should be pretty worry free. It's a simple procedure, and you can either stay one night, or leave the same day.
    I was back to work immediately - some take a day or a week off. The actual surgery is pretty short, time-wise.

    I just got mine replaced 6 months ago. What's cool is I've gone 6 months without need of a refill because of the larger reservoir the new pumps have. I go in next week for a refill, first one since Sep 8.

    Good luck - if you have any more questions, shoot me a PM or post them here.
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