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Thread: Baclofen pump, is it my last hope?

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  1. #1

    Baclofen pump, is it my last hope?

    I was back at the rehab hospital for a two week stay, but ended up staying three weeks instead.

    I have pretty bad spasticity and spasms, so the doc tried dantrium on me while I was there. About an hour to an hour and a half after taking the dantrium, I'd start getting dizzy and confused. It wasn't a fun feeling. I stayed on it a few days hoping it would go away, but finally had enough and stopped. At the time, the only other med I was taking was 80mg/day of baclofen.

    I'm now on 40mg/day of baclofen and 10mg/day of valium. He reduced my baclofen after I mentioned to him about my vision being clear in the mornings when the baclofen had worn off, and becoming blurry after starting it up in the morning. I have noticed an improvement in vision, since the reducing the dosage, and I don't know how to describe it but I feel better. The spasticity did get worse though, thats why he added the valium. I couldn't tolerate valium before, but I can now. Any more than 10mg/day though, and I get too sleepy.

    We've tried every med there is to control my spasticity, but nothing has worked. He's ordered a test to see if a baclofen pump is going to do anything for me. The surgon that puts them in came by while I was still in the hospital to tell me about the procedure, but the doc that was supposed to do the test never came. I'm still waiting for them to call and give me an appointment.

    Is a pump my last hope? I don't like the idea of having a pump implanted in me and having to go somewhere every month or so to have it refilled. But if it works I guess I can live with it.

    The oral baclofen is the only thing that had any effect on the spacticity, but it wasn't much. I couldn't tolerate more 80mg/day though.

    _____
    Learn from the mistakes of others, you won't live long enough to make all of them yourself.

  2. #2
    HI, Jim -

    It took a while for my son to realize that the pump was his best decision; I think just the thought of the procedure itself freaked him out a little, after everything he had already been through.

    He's had the pump now since July 2001, and I can't say enough good about it; none of the usual oral Baclofen side effects like the eye problems or mental 'fuzziness' and dry mouth, since the medication is delivered directly to where it needs to go. Once the surgery is done, and you heal from that, the minor adjustments to transferring, clothing, etc. just become commonplace every-day events. The refills are usually every 2-3 months, depending on your dosage, and it only takes 15-20 minutes for the refill. In Jersey, we had home health nurses who came out to do the refill; here in South Carolina, the nurses aren't 'allowed' to do it, so we have to go to a neuro clinic to have it done, but it's still not a big deal.

    Can you call the doc who's doing the test? I have learned lessons about the 'squeaky wheel getting greased', and generally give docs and the like 2 days to call me back, or schedule appointments, then I'm calling them; forces 'em to make that appointment!

    Make sure that the doc who does the surgery, has lots of experience with it; and make sure you know exactly who is going to be doing the refills, and where, and also have numbers to call if any problems should arise.

    Have you been up on the Medtronic site? They have a pretty detailed info page on the pump -
    www.Medtronic.com

    Good Luck!

    _____________
    Tough times don't last - tough people do.

  3. #3
    Senior Member
    Join Date
    Feb 2002
    Location
    middle of nowhere
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    jimnms,
    do you have the jerking, jumpin, bed rattling spasms or the tight muscle type. The only relief I got for 14 months from shake rattle and roll was Demerol. The pump was lifesaver.Don't even know it's there.WR

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