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    Baclofen pump doesn't seem effective?

    I've had a baclofen pump since September 2010 (2.5 years ago). It worked well for a while at controlling my spasticity. For the past year or so (after my mitrofanoff surgery) I've had spasticity/tightness/tone that is not controlled by the pump. It does control the spasms I would have that would send me into extension before I got the pump, and whenever my doc moves my legs around they seem totally flaccid, but I have this constant tone that affects my torso, and I get spasticity in my left toes and tightness in my legs which is also constant that goes into my upper extremities. I have to lean forward every few minutes and bend in half in order to temporarily relieve the tone, but it always comes right back. My doc doesn't think there's anything wrong with the pump because an x-ray looked normal, whenever he refills it the correct amount of medication comes out, and the big muscle movements I got pre-pump are much less intense. I have no obvious cause for increased tone: no sores, no symptoms of a UTI (but I am colonized), had normall gall bladder ultrasound a little less than a year ago. I'm so tired of this and just want to get back to how I was before this weird, different spasticity/tone started. I'm at over 700 mcg a day and at no point did increasing the pump dosage change the tone. Any ideas what might be happening? My doctor is telling me to just "live with it." It has also gotten significantly worse in the past two days, which is what has prompted me to write this.
    Last edited by GGabrielle; 2 Apr 2013, 7:00 PM.
    C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

    #2
    He should do a dye study test. It is possible the catheter has a leak, or came loose at the end, so pump sends out the correct amount of med, but it doesn't reach the desired destination.

    Could it also be the new tone is being created above the catheter location maybe?
    "a T10, who'd Rather be ridin'; than rollin'"

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      #3
      Possibly - my catheter is at L1, but most of the tone is in my hips and legs, and it bleeds into my stomach. It's getting so bad. I think my hip flexors are straightening me out, and the left side is way worse than the right, making my pelvic obliquity worse. In order to "break" the tone I have to lean forward and fold entirely in half every few minutes and trigger the spasms. It's bleeding into my arms now and causing tone/pain, and also making me nauseous and I'm dry heaving. There is no way my doc will do a dye study - he is adamant there is nothing wrong with the pump because my legs aren't crazy when he moves them around.
      C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

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        #4
        McD is right, you need a dye study. Call Medtronics, maybe they can prompt your doc to get it done. Or try someone else. Good luck.
        Originally posted by GGabrielle View Post
        Possibly - my catheter is at L1, but most of the tone is in my hips and legs, and it bleeds into my stomach. It's getting so bad. I think my hip flexors are straightening me out, and the left side is way worse than the right, making my pelvic obliquity worse. In order to "break" the tone I have to lean forward and fold entirely in half every few minutes and trigger the spasms. It's bleeding into my arms now and causing tone/pain, and also making me nauseous and I'm dry heaving. There is no way my doc will do a dye study - he is adamant there is nothing wrong with the pump because my legs aren't crazy when he moves them around.
        Please donate a dollar a day at http://justadollarplease.org.
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          #5
          Absolutely agree with above. A dye study is in order.

          CKF
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            #6
            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?
            C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

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              #7
              As a side note that may not be relevant - For the past year and a half I have also had issues with nausea, lack of appetite, and dry heaving, and I was diagnosed with bilateral brachial neuritis, which I still have extreme pain/weakness in my upper extremities from. All of these issues kind of happened all at once.
              C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

              Comment


                #8
                Hope things work out for you with the pump.

                One doctor who follows my injury suggested that the baclofen pump isn't so effective at calming spasm in the arms & hands. Any truth to this?
                C4/5 incomplete, 17 years since injury

                "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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                  #9
                  My doc has told me that as well, although my catheter placement is at L1/2 because I don't have spasms in the upper extremities. I only get right finger spasms when my legs spasm.
                  C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

                  Comment


                    #10
                    Originally posted by GGabrielle View Post
                    My doc has told me that as well, although my catheter placement is at L1/2 because I don't have spasms in the upper extremities. I only get right finger spasms when my legs spasm.
                    For my baclofen pump, the catheter enters at L1 but the tip of the catheter, where the baclofen is dispersed, is at T8. Some of the drug will travel all the way up to the brain, which explains side effects like sleepiness. My doctor told me that they could lower the tip of the catheter from T8 to reduce side effect of sleepiness. I suppose they could raise it as well. Your injury level, response, and what you are trying to achieve will determine if this makes sense for you.

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                      #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

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                        #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
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                          #13
                          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.

                          Comment


                            #14
                            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.

                            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?
                            Please donate a dollar a day at http://justadollarplease.org.
                            Copy and paste this message to the bottom of your signature.

                            Thanks!

                            Comment


                              #15
                              Totally agree with rdf. Please try together a dye study.
                              CKF
                              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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