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Thread: URGENT..... Baclofen pump advice!!!!

  1. #1

    Question URGENT..... Baclofen pump advice!!!!

    Hi everyone,

    I know that it has been forever and a day since I have posted on here but, I really could use some help/expertise. So, for the last few months, I have had a gradual/large increase in the amount of spasticity that I am battling. I am currently in a sub-acute rehab facility because I broke 3 ribs, don't ask how that happened. The therapists all brought up the idea of looking into the pump since the oral baclofen is not helping .

    My concerns are this....
    1. It's surgery
    2. It's surgery
    3. It's surgery
    4. Did I mention, IT"S SURGERY!!!!

    I was wondering if those who have had, do have, or have tried the pump could give me their input, either good or bad, about the pump I would greatly appreciate it!!

    Thanks,
    Becky

    T11-12 (1/04)
    Type 1 diabetic (8/91)
    Hypothyroid (6/14)
    Chronic pain (2005)
    J-tube (6/13)
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

  2. #2
    The other recommendation I would have is to talk to a specialist - usually a physiatrist - who manages these pumps. You can talk to the vendors (from Medtronics) and also talk to other people who have had them implanted. Yes surgery. You will need to get a spinal MRI to make sure that your spinal cord can accommodate the catheter. I think I heard recently that there is an extremely low percentage of complications from the research.

    good luck - the more information you have you can weigh the pros and cons and make an informed decision.

    pbr

  3. #3
    HI Becky, I also struggled with extremely bad spasticity in the past. so bad it got to where I couldn't drive my car or even be intimate with my wife. I had the pump installed over a year ago. Best surgery I have ever had. It was life changing and even helped a little with my pain. The recovery time was not bad I was back at work within 3 days. I have not experienced any real problems with the pump with the exception of going past my refill date, which I don't recommend the withdrawls can be bad. The downside is depending on your dosage i ususally have to get my pump refilled every 3 to 4 months.
    to refill they of course have stick you with a needle and depending on how good your dr is or nurse practricioner depends on how many times you get sticked. Typically it's done the first time about 75 % of the time. I did however have one extremely bad episode where they couldn't hit the port and they had to stick me 8 times that day to refill the pump. Very painfull. Good luck

  4. #4
    I am definitely going to be talking with my physiatrist about this too! I didn't think of talking to Medtronic, or other reps. What other reps provide the device and what types of questions would be appropriate to ask them? I would just assume that they would not be all that honest and try to push their product.

    Would the physiatrist actually do the surgery or would it be done by an actual surgeon? Is there a hospital stay involved? What about during the trial phase, is there a hospital stay with that?

    Thanks,
    Becky
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

  5. #5
    I think Medtronics is the only company that makes the baclofen pump.
    A neurosurgeon places the pump as the catheter is placed in your spinal cord.
    Medtronics vendors actually go into the OR with the neurosurgeon and then the work closely with the physiatrist or neurologist who manages the pump.
    The vendors can give you the names of people who have similar spasticity or level of injury to talk to about how it affects their lives.

    pbr

  6. #6
    Pbr and Nm,

    Thanks so much for the info!

    Thanks,
    Becky
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

  7. #7
    I see that this is an old post, but any other users here with a pump?
    Oral baclofen just doesn't seem to work for me, I take 100mg a day
    C5/C6 Complete since 08/22/09

  8. #8
    You certainly can speak to your physician about the pump. It is definitely a good option for some people because of the way that the medication is consistently delivered. Also, 100 mg is not the max dose, so you may want to look into that.

    There are also other medications that can be used, although Baclofen is certainly the most common.

    CKF

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