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Thread: Nerv pain: why do some get it and some don't?

  1. #11
    Senior Member alan's Avatar
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    I felt nothing for a month after the injury. I want that back. I could have made a life like that - pains never allowed it.
    Alan

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  2. #12
    When I did a survey on my website several years ago, it was common for complete quads to report that they had no normal touch sensation below the level of injury, only neuropathic pain. It's a common complaint that they can't make people understand how they can't feel anything, but they hurt. It's also common that whatever causes the central pain, SCI, stroke, etc, the neuro pain often starts months later. There's also a risk of central sensitization if severe but possibly treatable pain endures for several months.

  3. #13
    I guess I'm lucky because my only nerve pain is in the toes on my right foot, and one likely cause is treatable, an ingrown toenail.
    Never took medication for it.

  4. #14
    Senior Member alan's Avatar
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    For years after my 6/81 injury, doctors told me I couldn't have pain, and refused to try to deal with it.
    Alan

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  5. #15
    I had no pain for first 5 years of my injury, now it just keeps getting worse, I'm told it's a syranx (sp?) a fluid filled sack on my spinal cord, not big enough to drain though, just take meds that don't really help the problem but I guess It's better than nothing.
    Dave
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  6. #16
    The literature supports that at least 60% of people with SCI have significant neuropathic pain, and another 20% have pain but not severe enough to interfere with their daily lives. Anyone who has extensive experience with patients with SCI knows this. If someone tells you people with SCI (or MS) don't have pain, they are either lying or don't know anything about SCI.

    Some studies indicate that neuropathic pain is more common in those injured when older than in those injured when younger. One study I just read had a 2X increase in in neuropathic pain in those injured after the age of 40 compared to those injured prior to the age of 25.

    We also know that most people with SCI who have neuropathic pain report it is worse when they are fatigued or depressed, and that it unfortunately tends to get worse with aging. Weather (atmospheric pressure) can also make a difference. A syrinx can also cause new or worsened pain (dgrotz, get another opinion about your need for syrinx surgery).

    Dr. Young claims there is less neuropathic pain in those who got methylprednisiolone on the day of their traumatic injury, but that has not been my experience, and I haven't seen this documented in the literature.

    Certain types of injuries, for example, gun shot wounds or cauda equina injuries, have a very high rate of severe neuropathic pain vs. other mechanisms or levels of injury.

    (KLD)

  7. #17
    Senior Member jccarolina's Avatar
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    My friend is a T12 complete (Shot in back in '06) and he has horrible pain in he's legs.
    I've never seen someone twist into a pretzel from the pain like he does.
    I have it pretty bad sometimes too with this new T10 injury.
    We are going to a new SCI Doc. tomarrow.
    Last edited by jccarolina; 08-06-2008 at 01:42 PM.
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  8. #18
    Junior Member allen54's Avatar
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    Nerve pain

    My nerve pain stated in Oct.07 and started in feb.08 with nerontin1800 mg per day.My problem is when the pain gets bad I start in with the vicoden. I would love if they could burn the nerves away.Certain days I could just SCREAM! The Dr gave me one drug that got the pain to go away but I kept forgetting so many things it was crazy

  9. #19

    nerve pain

    has anyone suggested radio frequency nerve ablation?

  10. #20
    I started having pain 3-4 months after having a spinal cord tumor resected in Dec 1997. It's all been downhill from there. None of my doctors believe that I'm worsening, including pain management. Since none of her other central pain patients have worsened, she said I am simply "perceiving" that the pain is worse. But she will treat me anyway. Grrrrr-can't stand the condescension. I can't have MRI-I have a permanent electrode glued to my brainstem. (1999-desperate for help, I allowed myself to be a guinea pig in an effort to cover bilateral waist to toes central pain with very high placement for spinal cord stimulation-what a fool I was!) I am 75% sure that if I could have an MRI rather than the current myelogram w/CT, that syrinx, tethered cord or something would show why I'm so severe I can't even sit in a wheelchair! I can walk, but I'm in too much pain to do much else than lie flat in bed. It is the pulling and crushing sensation that is so disabling, esp when getting up from a sitting position. I don't even have spasticity for God's sake. I look so "normal" the doctors don't have a clue how much agony I'm in. If I were to actually verbalize it (and I have), I get referrals to shrinks. It's the invalidation from the medical community and my own friends and family, that is the most crushing blow of all since my tumor surgery. I feel profoundly alone.

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