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Thread: 1.5 Years after SCI things are worse!!!

  1. #1
    Senior Member
    Join Date
    Aug 2004
    Tallahassee, FL

    1.5 Years after SCI things are worse!!!

    Doc Wise... SCI Nurse / what do you think.
    I am T-12 Complete Para. Badly crushed and stretched cord... According to the Docs... It was a mess! Things seem worse lately. Where canI go to get it checked, fixed. Sweating on a level that is unimaginable. Pain... New sensations in hands and entire lower body. A Light sort of cold electrical tingling, in hands especially. Secondly, Lots of Spasms at night very very stiff contracting spams. When I sleep I stiffen up at the waist and litterally cannot move. Its really getting awful. Spams are new and severe right at the site of my injury... boom bang.. looks like an alien is popping out of my spine? Can the Shepard Clinic Help... or the Colorado Place? Can you recomend a Doc perhaps. My reg MD can do nothing for me except maybe order an MRI... but who takes it from there. Would love to hear your thoughts. Life is really tough right now. The wife and three teens are in need of this to end... and stabalize quickly! I feel worse for them ! Mikey!


  2. #2
    Senior Member Kaprikorn1's Avatar
    Join Date
    Sep 2002
    S.F. Bay Area, Calif.
    Mikey...sounds like neuropathic pain you are experiencing (nerve pain, not actually caused by outside source). This would indicate that your injury is actually incomplete rather than complete.

    You definitely need to get on with a physiatrist or MD that is familiar with SCI. An MRI and x-rays would probably be his first course of action. If you don't have something organic newly causing the pain, like a syrinx or cyst, etc., your pain is most probably neuropathic. Many of us find that Neurontin helps a lot though some don't. If that doesn't help it enough, you probably need to go to the stronger stuff like opioids, etc.

    All of this needs to be prescribed by a Dr. after he has determined that it's not something physically going on. I'm sure your current Dr. can find you a referral to a neurologist or physiatrist in your city.

    Good luck on finding some relief.


    (This space available)

  3. #3
    yes i echo kaps suggestions, have your physiatrist or sci doc check you out , and refer you to pain management that is familiar with sci pain.
    the spasms require different treatment, again a sci doc will be able to help

  4. #4
    Hi- Seems pretty similar to my message of early dec ("worsening spasticity 1 year out"). Since then, he had a MRI (cruddy looking cord but no change on MRI & no syrinx. He finally pinned down his experienced rehab doc & she said essentially, its the way your injury is evolving. Have adjusted some meds, he went to spasticity clinic (Kessler) & had botox injection in one shoulder- overall its better with some changes but still an ongoing project. Also clonazepam, a tranquilizer in the valium family that he takes for anxiety, helps quite a bit, tho it doesnt make you brighter (dopey & forgetfull) Stretching twice a day should help, good nights sleep & of course make sure no wounds/contipation/infections as this can set it off (spasticity -that is) I've also observed- as have other friends & family- that emotional upset will set it right off...
    Best luck, be a squeaky wheel for your needs.

  5. #5
    "Cold electrical" should certainly be nerve injury pain, I would think, but what is it doing in his hands. Did the injury also occur higher?

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