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Thread: Baclofen pump FAQ

  1. #271
    @hv, it's worth having a conversation with your doctor about switching over to the pump. My understanding is that the maximum daily dose of oral baclofen is 80mg, so s/he may want you to see if increasing your dose by 20mg a day, with the extra 20 taken in the afternoon when the spasticity [stiffness] is the worst, before considering the pump.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  2. #272
    Many people take more than the recommended maximum dose of oral baclofen of 80 mg. daily. Keep in mind that meds for spasticity help much more with TONE (spasticity) than they do with SPASMS (involuntary movement).

    I doubt you would qualify for a baclofen pump if you have not been on record as maxing out on not only baclofen, but the other available drugs for spasticity management, including tizandine (Zanaflex) and possibly Dantrium (dantrolene sodium) as well.

    (KLD)

  3. #273
    I cannot take oral baclofen in doses higher than 20mg at a time without being extremely tired and lethargic. I got the pump in April 2010 after a severe relapse that left me with major spasticity and unable to walk. The pump was a good solution for me because I have a low tolerance for pain meds. It has made a wonderful difference for me.
    I have had no problems with the medication in the pump. I am at a very low dosage and have had to have my doctor make 3 adjustments to the amount of baclofen released due to increased spasticity. I have had the pump refilled 2 times. Refill process is extremely easy. Done in the doctor’s office and the appointment takes all of 15 mins.

  4. #274

    baclofen pump

    I had the baclofen pump implanted last year and the catheter broke by the end of the year. Just had surgery again last week to fix it after months of telling the doctors something was wrong. I don't do any crazy exercises and am ambulatory with a cane due to spasticity. They say I can resume my normal activities but now I'm terrified this will break again. I just wondered if anyone has had similar problems. I really don't want to keep repeating this surgery and I am excited to actually get results. I am now just terrified of moving a certain way and breaking the catheter again.

  5. #275
    My son had a baclofen pump for ten years and never a problem with the catheter. But he had a problem we believe was caused by the pump....but we believe it was from a bad battery. Medtroncs has a recall on the pumps for this issue, but we didn't know that. Either did our doctor. We didn't know the signs of baclofen withdrawal and he was helluncinating, so he couldn't tell the doctors in the emergency roonm what was going on. I would suggest that someone close knows about the signs of Baclofen withdrawal and what should be done if something goes wrong.

  6. #276
    Quote Originally Posted by stephc10 View Post
    I had the baclofen pump implanted last year and the catheter broke by the end of the year. Just had surgery again last week to fix it after months of telling the doctors something was wrong. I don't do any crazy exercises and am ambulatory with a cane due to spasticity. They say I can resume my normal activities but now I'm terrified this will break again. I just wondered if anyone has had similar problems. I really don't want to keep repeating this surgery and I am excited to actually get results. I am now just terrified of moving a certain way and breaking the catheter again.
    Steph,
    I had the same problem. My first surgery for implantation of the baclofen pump was Dec. 21 20111. For a short time, I could see a light at the end of the tunnel: tone decreasing, spasticity pain decreasing, just about ready to ditch my walker. Unfortunately, all of my improvements went away, and, after about a month of trying to convince my pump team that something was wrong, it was discovered that the tubing wasn't patent.
    I just had a complete revision of the pump, tubing, etc. They also moved the pump a bit more towards my belly button, as the pump had been hitting my hip bone.
    The surgeon told me that she had no idea why the tubing wasn't delivering the medication to my spine, as there was no leakage or holes, and no clots or occlusions.
    So, like you, I am scared to death of this happening again.
    I have MS, with all of my lesions in my c-spine. Still, I had been very active,and worked out quite a bit.
    The spasticity management nurse says I will have no physical restrictions once the pump is scarred in, but I will always wonder if I did something wrong the first time around.
    My physical therapist, knowing how hard I work out, will not let me get back to full exercising for 6-8 weeks post surgery, but the pump team thinks I could start 2 weeks after the surgery. (I can barely move my legs, as the pump needs adjusting upward!)
    I wish I had answers for you, but all I can do is completely relate to what you are going through.

  7. #277

    Baclofen pump experience

    I don't have a spinal cord injury but I suffered a brain stem stroke in August 2010. This forum has answered a lot of my questions regarding the pump. I had the pump since November 2011. I haven't gotten much relief from it, and I'm up to 615 mcg. I had a dye study done last month, but everything was ok.

    I would like to get other peoples experience with it. Do you get progressively looser or does it happen all at once? I'm just getting nervous about it.

    Thanks

  8. #278
    When my son first went on the pump, the relief was immediate. Although he lost some strength, his spasticity was reduced along with the pain in his calves. The dosage had to be periodically increased over time. Everyone is different, and he developed psych problems after he went on the pump. His psychatrist said it was related to the interaction of baclofen with other meds.

  9. #279
    Dot,
    I am definitely "looser", but still hypertonic. My second pump was placed one month ago. The pump team that I have been seeing weekly, are fearful of getting me weak, but I am far from weak, and just wish they'd crank that pump dosage up to the point of weakness, and then back off. Prior to the pump, I used a walker for longer distances, but now I am so tight that I use the walker even in the house now.
    I must say that my spastic paraspinals and hip flexors have relaxed enough that I am no longer in constant pain....a huge plus.
    I have multiple sclerosis, so I am on a much lower dosage than you (120mcg right now, actually,kind of high for someone with MS.)
    So, with my experience, I am very slowly getting looser.
    Best of luck.

  10. #280
    Today is the 1 year anniversity of my sons "event"...we think the baclofen pump malfunctioned sending him into a coma which last for months. Today, he is still in rehab from the event. During the last year, he was weaned off baclofen...down from 350 to zero in January. The withdrawal was HORRIFIC. So I would make certain you have someone always around if you decide to get off the stuff. Good news is that he is doing considerablly better than when he was on baclofen. He lost weight and is stronger so he can exercise and stretch to combat the spasicity. The nightmare of the last year may turn into a beautiful dream if he continues improving and gets back to where he was before he "discovered" baclofen.

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