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ITB Baclofen @3000 mcg daily w/ no relief

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    #16
    Hi armymech all I can say is I'm in the same boat and not happy about it. I'm back up to 800mcg/day and I'm starting to have problems staying awake during the day again. Strangely enough I'm also having trouble sleeping at night.

    I could live with the stiff legs but the back spasms are killing me. That plus the nerve pain and by the end of most days I feel like throwing in the towel.

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      #17
      Lazlo...do you have a Medtronic Synchro Med II pump? These pumps have been recalled for battery problems. This is the one my son had and he has had problems and need for frequent adjustments ever since it was installed. Although it was "tested" and said to be functioning, we think it was malfunctioning but not showing up on the Medtronic test. If you have a recalled pump, you may want to have it replaced...even if the doc says its working ok.

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        #18
        Now i go in on 23rd and they might do a trial and inject baclofen at C-5 I think and if it helps maybe a 2nd pump? We will see. Does anyone have a 2nd pump or heard of that?

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          #19
          Originally posted by Lazlo View Post
          Not much to add here except that I'm in the same boat. Two catheter studies, one catheter revision, MRI, countless dose adjustments, everything looks normal but I've got more spasms than ever. The back spasms are the real killer because I can still feel my back and they're very painful. If the pump just got rid of those spasms I'd be happy with it.

          I've never heard of someone getting 3000mcg/day before, that's really high. At around 900 I was basically going in and out of mini-comas and had to have it cut back. I'm at about 650 now and inching back up to try to address those back and abs spasms but no luck so far, and I can't go above 850. Overall I'm pretty unhappy with this whole bac pump experience.

          Here's the thing though
          . My initial test dose was very effective. After over a year of pestering my docs they agreed to repeat the test dose to see if it was still effective. Unfortunately, this second test dose, nearly three years after the first, was completely ineffective. In fact the PT said I seemed to get more spasms after the dose.

          So is this a case of becoming resistant to the drug over time? The docs say they have no idea, there are no more tests they can run, essentially they have no plan for me at all. So all I can do is push it back up near the comatose level again and hope for some relief from the most painful of the spasms.

          It's interesting what you say about using the 1000mcg/mL solution. All I can think is that maybe the additional saline helps transport the drug further from the catheter tip. But if you're using 3000mcg/day with a 40mL pump filled with 1000mcg/mL solution, does that mean you're getting a refill every 13 days?
          Originally posted by armymech69 View Post
          Now i go in on 23rd and they might do a trial and inject baclofen at C-5 I think and if it helps maybe a 2nd pump? We will see. Does anyone have a 2nd pump or heard of that?
          Do u ever have problems breathing? I am in the same boat as you but my level is only at 500.

          Evonne
          I have a spinal cord injury...a spinal cord injury DOES NOT have me!

          walking quad-Central Cord Syndrome

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            #20
            Originally posted by arndog View Post
            Skeptic that I am, is it possible that your doc is incorrect and that the pump is not functioning properly? Did he do a dye study? Is there a crack in the delivery system that is leaking the meds not into the proper place?
            i have the same problem. i take valium for spasms but it doesn"t work as good as i would like it to.if not for it i would be bouncing out of my chair. i am also medicated with for pain oxcycontin and oxcycodone for break through pain relief.

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              #21
              Originally posted by Evonne View Post
              Do u ever have problems breathing? I am in the same boat as you but my level is only at 500.

              Evonne
              Yeah my abs are really tight, I have to breathe by heaving my chest up and down sometimes.

              I'm trying a new med, Lorazepam, which is really just high-powered Diazepam (Valium) as far as I can tell. I haven't got the dosage quite right but it seems at times to loosen up my back spasms pretty good.

              As far as the pump goes, I'll be cutting back the dosage down to 0 over the coming months, then deciding where to go from there. What a huge waste of time and money this thing has been.

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