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Thread: Any ideas re my next move?

  1. #1
    Senior Member alan's Avatar
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    Any ideas re my next move?

    As I posted in another forum, my appointment with Dr. Hendler at Mensana Clinic didn't turn out positively. His opinion was that my pain syndrome wouldn't respond to medication (including epidural or intrathecal meds), and that my only option was brain stimulation (which may or may not work.) Well, nobody's poking an electrode into my brain - except for my hair, it's the only part of me that works (okay, sort of.) So, I'm looking for ideas for my next move.

    Dr. Young, any ideas? Also, a couple of other questions: 1) Is there any way to find out if my cerebrospinal fluid is properly circulating, and isn't blocked by scar tissue at the injury site, so any medication pumped into it would reach my brain? 2) What's the difference between epidural and intrathecal? I may have asked this before, but it might be back at Spinewire and I've forgotten the answer.

    Thanks, all.

  2. #2
    Alan,

    • Intrathecal refers to a catheter that is placed inside the dura (thecal sac) that surrounds the spinal cord.
    • Epidural refers to a catheter that is placed outside the dura in the spinal canal.
    • Intraventricular refers to a catheter that is placed in the ventricles of the brain, usually the lateral ventricles.

    Spinal cord stimulation has been reported to help some people. Have tried or is your doctor considering that possibility? I assume that you have tried a baclofen or a morphine pump.

    Wise.

  3. #3
    Senior Member alan's Avatar
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    I had a spinal cord stimulator for a year back in the mid-80s. It never provided any relief. The stimulator position was revised three times, and all the settings were tried - no joy. Finally, it was removed.

    I had a test epidural injection of morphine, and all it did was make me itch like crazy above the level of injury. A test intrathecal injection of baclofen did nothing. However, my only remaining option may be to try test injections of other meds - I'll need to find yet another pain doc for that.

    What's preferable for medication delivery - epidural or intrathecal? Does the medication flow with the cerebrospinal fluid? Is there any chance my flow of cerebrospinal fluid is obstructed by scar tissue resulting from the injury?

    [This message was edited by alan on November 26, 2001 at 05:18 PM.]

  4. #4
    Alan,

    Epidural application usually involve lidocaine or a local anesthetic agent that numbs the nerve roots. It does not penetrate into the spinal cord. If you pain is neurogenic, intrathecal administration of drug would be a more rational approach. I am not sure why none of the procedures are working and it seems that you have tried virtually all the options that involve the spinal cord. I now understand why your doctor is considering brain stimulation.

    Wise.

    [This message was edited by Wise Young on November 28, 2001 at 04:36 AM.]

  5. #5
    Senior Member alan's Avatar
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    You, me, my primary care doctor, and dozens of other doctors over the last 20 years wonder the same thing. :-( Maybe the spinal cord stimulator didn't work because they could never place it above the injury site.

    While I look for another pain doc to try intrathecal meds, we're going to try Wellbutrin and then a newer anticonvulsant like Trileptal, Keppra, or even an older one like Lamictal. Hopefully, side effects won't doom them.

    It's actually a darn shame I have to take meds - my bowel and bladder are flowing nicely right now with me on nothing.

  6. #6
    Alan,

    Have you ever had a formal trial on lidocaine to see if it has any effect on your pain? A proper trial is done with much higher than normal levels of the drug and the necessary medical personnel on hand in case your heart decides it doesn't like those levels of lidocaine.

    David Berg

  7. #7
    Senior Member alan's Avatar
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    I've had IV lidocaine (with all those trimmings.) Topped out at 300 (mg, I believe.) No effect on pain or heart.

    Right now, we're going to try Wellbutrin (Bupropion) while I look for a pain doc to try some intrathecal meds.

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