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Thread: Pain Pump

  1. #1
    Senior Member mike's Avatar
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    Pain Pump

    I am a c5 incomplete three years post injury and have had severe central nerve pain for the last two years with the symptoms worsening all the time. I am on 1800mg of neurontin daily, have tried higher doses and have seen no real improvement.

    My doctor has recommended a medtronics pump using baclofen. I questioned as to how the pump would be useful below the level of the injury and I was told that the medication would flow above the injury and would provide some benefit.

    I am a bit confused. Several people have asked about the benefit of this pump for central nerve pain and I have yet to read anything either in this website or in the Pumpster chat line of anyone receiving any relief for central nerve pain in this way.

    You folks are closer to this then anyone. Do you think it would be worth it to me to try this procedure? I am told it cost around $14,000 for the implant plus the costs of medication and refills. A lot of money if it doesn't do any good.

    mike

  2. #2
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    Mike,
    I've got a medtronics baclofen pain pump but it's for controlling severe episodes of muscle spasms usually accompanied by AD which was painful but different from neuropathic pain. Several on the board have them and you'll probably get more help from them, the nurses and Dr. My pump is a lifesaver.WR

  3. #3
    There is a chance that baclofen given intrathecally could help some with your neuropathic pain, but many have had this pump placed with no change in their neuropathic pain as well. It is primarily for control of refractory spasticity. I wonder if your insurance would cover it unless refractory spasticity was also documented. In my experience the cost for the surgery, implant and hospitalization is closer to $25,000, with additional annual costs of $1000-3000 depending on how often you need yours re-filled.

    A nearly identical pump made by Medtronics is sometimes used to give intrathecal morphine. This is often used for people with chronic malignant pain (cancer pain). It has also been used in SCI with mixed results for neuropathic pain.

    Either morphine or baclofen (or both) can be tested first with a one-time intrathecal injection prior to having a pump placed. I would strongly encourage you to have this done first before considering a pump. The pump is not without potential complications including infection, pump failure, and kinking of the tubing.

    It should only be placed by a surgeon who is very experienced in this surgery. You also need a physician who will be good at follow up...answering your questions, getting back to you immediately for problems, being available for refills or testing and adjustment of dosage as needed. Ask to speak to several patients of the surgeon prior to surgery and see how responsive the physician has been to their needs since they had the procedure done.

    (KLD)

  4. #4
    Senior Member alan's Avatar
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    Mike,

    I doubt baclofen will do anything for your central pain. Morphine and Bupivicaine in a pump might. The drugs can have side effects, including constipation and urinary retention.

    A one time injection may not be a sufficient test. Most doctors seem to prefer a longer test, using a temporary external pump (at least that's what I've read.)

    When my doctor discussed a pump, he planned on placing the catheter as high up in my neck as possible (preferably above the injury site, if it isn't blocked by scarring), because that placement seems to get the best results in quads who do get relief from the morphine pump. He'd do a 3-5 day, in hospital test. I haven't tried it yet, because he hasn't figured out a way to counteract the urinary retention, and the hospital is out of my traveling range the way I feel (heck, my living room is almost out of range.)

    It would be nice if someone told us why central pain keeps getting worse even though MRI shows no changes, wouldn't it? We know scoliosis worsens due to gravity, and osteoporosis in those who have that, but we don't know why central pain gets worse.

    Whiterabbit, does having scoliosis make placement of the pump catheter more difficult?

    [This message was edited by alan on 07-13-03 at 09:59 PM.]

  5. #5
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    Alan,
    My neurosurgeon said placement was very easy on me with no trouble from scoliosis. He and the fill nurses say that generally if there is trouble it's with an obese patient. He said mine should be well scarred in by now while it has a tendency to move and turn with obese patients. WR

  6. #6
    Senior Member mike's Avatar
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    Thanks for the feedback

    This information is very helpful when having a discussion with a doctor who is recommending this procedure as it helps me in formulating better questions to ask. I obviously will not get involved in this procedure unless I get a positive reference from someone using the device in this way.

    mike

  7. #7
    Senior Member alan's Avatar
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    Originally posted by whiterabbit11:

    Alan,
    My neurosurgeon said placement was very easy on me with no trouble from scoliosis. He and the fill nurses say that generally if there is trouble it's with an obese patient. He said mine should be well scarred in by now while it has a tendency to move and turn with obese patients. WR
    Obesity is not one of my problems, since I barely eat.

    How does having a pump affect doing transfers or being transferred (as I am, via ceiling lift, pivot, or two person?)

  8. #8
    You might want to take a look at the Pumpers e-group at Yahoo for input on this decision.

  9. #9
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    Originally posted by alan:

    Originally posted by whiterabbit11:
    Alan,
    My neurosurgeon said placement was very easy on me with no trouble from scoliosis. He and the fill nurses say that generally if there is trouble it's with an obese patient. He said mine should be well scarred in by now while it has a tendency to move and turn with obese patients. WR
    Obesity is not one of my problems, since I barely eat.

    How does having a pump affect doing transfers or being transferred (as I am, via ceiling lift, pivot, or two person?)
    Alan,
    I have virtually twisted and turned in every position, sleep on sides, stomach and the pump keps right on pumping.It hasn't affected a movement at all, or maybe the other way around.WR

  10. #10
    Senior Member alan's Avatar
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    Originally posted by David Berg:

    You might want to take a look at the Pumpers e-group at Yahoo for input on this decision.
    I'm on the Pumpsters email list, for info.

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