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Thread: Baclofen pump doesn't seem effective?

  1. #11
    Hi, This is just my 2 Cents, but maybe Baclofen isnt such a great med. Your on a lot of it and having side effects too. They cant just say to move your legs and tell you its working. The most important thing is if you are suffering, not if they are happy. Maybe this treatment should be changed? A good pain doctor would be judging the effectiveness of your pain treatment by the relief you get from it. If Baclofen helps the spasms and not the pain, then insist they put an opioid into the pump too. We as pain patients have the right to be able to live without suicidal pain levels. I dont know your history, but if you dont have a previous problem with addiction you deserve real pain medicine.

    The police and big pharma should not be in control of our pain treatment. No, Cymbalta does not help musculoskeletal pain.no matter what the TV commercialsays. Then we have the NSAID killings.. 20,000 patients die every year from NSAIDS like the ones advertised on TV (Celebrex, etc). According to the Journal of the American Medical Association. That means more people have died from NSAIDS in the past 10 years than in Vietnam!

    We need to rise up again and make sure chronic pain patients are not forced to suffer. OxyContin may not be a good choice for patients, but there are plenty of other Opioid meds with no big street demand, and who cares if criminals illegally obtain something they arent supposed to have to begin with? After all, alcohol is 100% legal, 10,000 times more dangerous than prescription medicine, and is involved in about every violent crime! Nobody cares about that, but we are forced toi suffer?
    Besides, All pain can be treated and nobody should have to endure a life of intractable pain. It seems in the last few years the joint commission on healthcare abandoned us. Patients with long term severe pain are being ignored completely and left suffering, or given mostly ineffective dangerous neuroleptic drugs like Neurontin, etc.

    It breaks my heart every time I her about another victim of chronic pain, who is left to suffer. Pain patients need to band together again and stop this madness.

    -Jamie

  2. #12
    Jamie is right in that everyone deserves to have their pain treated. There are many different options out there for that.

    Your issues are two fold, it seems to me. And it could be that the pain is increasing the spasticity. Have you been to a pain management physician or program? That may be the first step, in that if you get the pain under control, you may not have the spasticity issues, or they may be better controlled.

    CKF

  3. #13
    Senior Member TerokNor's Avatar
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    The only pain I have is above my level of injury in my shoulders/neck from the brachial neuritis, so pain isn't as big of an issue for me as this ever increasing tone.
    C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

  4. #14
    Senior Member rdf's Avatar
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    I've had a pump since the mid 90s, and I've had a similar problem three times.

    Each time the pump looked and performed perfectly, the right amounts were there when refilled, etc. But until they inject some dye into the pump and follow it's path as it traverses the catheter and into your spinal cord on a fluoroscope, only takes a few minutes, no doctor in the world can diagnose a pump just by looking at it and moving your legs.

    Each time for me, the catheter was leaking, spilling most of the drug into my tissue, and not my spinal cord. I could look at the fluoroscope screen and see it myself, in fact I caught it before the doctor did. A quick surgery to replace the catheter fixed me up each time.

    Get a dye study. Call Medtronics and tell them your problem and have them contact your doctor, or find you one who will do such a study. At least you would know either way.

    Good luck Gabrielle.

    Quote Originally Posted by GGabrielle View Post
    So I went to another physiatrist who agreed that a dye study would be pointless because they say my pump is clearly working because my legs are flaccid when they move them around. The tone/tightness is awful though! I feel like I can hardly breathe and have to fold in half to trigger muscle movements in my legs every few minutes. I find the tone easier to deal with when I just lay in bed and have someone bend my legs and hand them to me to trigger the spasticity. Next step is to take oral baclofen I guess. Any other ideas/insights?
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    Thanks!

  5. #15
    Totally agree with rdf. Please try together a dye study.
    CKF

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