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  1. #1

    Pain - giving up the search

    This is a wrap up on my quest to reduce my pain levels to tolerable, I've thrown in the towel. Can't do this anymore and there is nothing left to try but deep brain and that's a no.

    My doc says I'm a multimodal complex pain patient. She was always up front there is nothing for CP but if I was willing would experiment and maybe learn or find something. Worth a short visit to the injuries to put some perspective on this, won't go into the details, old military combat. Broken C2-3 fused, Laminectomies in thoracic, Fused L3-S1. Stenosis, Degenerative disk disease. Clinical Diagnosis, Failed Back Syndrome, Post laminar Syndrome, Post fusion syndrome, Cauda Equina Syndrome, Central Pain. Net you have the CP, you're screwed, sorry folks, pray you have a regional or pain of a lesser God.

    I have a new pump and am near max of the new wonder trial drug, Midazolam, (Versed).

    There is good news about it, for the "chainsaw in lumbar" there is notable relief. I've had periods where it is down to 5, annoying. Totally off label usage, good luck trying to find someone who'll do it. If my main problem were of the Lesser God I might have found religion. I won't give it up any little bit helps.

    However, it does nothing for the Central Pain. I've detailed what it is like, no need to do it again. Dejerine, I'm done. Chased too long, I'm weary of the chase. What I find happens is one pain feeds another and then here comes the shitstorm. Still have major episodes a few times a week and sometimes for weeks at a time. The easy times ..aren't it is ever vigilant and always aggressive.

    I have the spasticity 60-70% controlled, still working on that but am reaching what they say is about it.

    I've found the best I can do is meditation, supplemented by alcohol and valium depending on time, bad combo.

    So there you have it. Hope all my friends are well. If anyone has any questions I'm happy to answer. There is no protocol other than the deep brain I haven't tried.

    Kindly,

    ket

  2. #2
    Hi Bill - with a melancholy sense of relief, I am happy that the chase is over for you. That is so exhausting trying new regimes and treatments after all these years. Trying to decide if there is a slight uptick on the "miserable index" with each new treatment - "did you move from a 8.5 to a 8.25?" REALLY? It is so hard to quantify misery once it is beyond what a normal person could even imagine. You fought a good fight trying to medically treat your way out of the hole you find yourself in.

    Although you may be isolated at home from others who are fortunate to not experience such pain, there are still those right here, reading your posts who get the magnitude of this problem, including myself.

  3. #3
    Senior Member alan's Avatar
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    Yep, some of us get it. You're a tougher man than I, Gunga Din.
    Alan

    Proofread carefully to see if you any words out.

  4. #4
    Man I'm still searching. Meditation is a part of the puzzle, but only a small part.

    Have you tried a sensory deprivation chamber? I've been looking for one to see if it could reboot my software.

    So even Ketemine was a dead end?

  5. #5
    I don't know I could handle sensory deprivation with the pain levels and spasms I have, I would likely self terminate. I don't see any literature that says sensory dep truly reboots your software. Ketamine does. CP is not imaginary or phantom it is a real physical phenomena so a reboot does not fix the nerve damage the is the underlying causality. So not knowing your issues I cannot comment on ketamine for you

    Ketamine was a no go. Could not get a bona fide ketamine coma, not covered under insurance, the study my doc asked for a compassionate exemption in said in all their trials with ketamine there was zero efficacy so they would not. I was prescribed ketamine and did enough to drop into the K hole. but nada, in fact it helped nothing for me. The efficacy for phantom limb, breast removal and similar is quite high.

    ket

  6. #6
    Senior Member alan's Avatar
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    "Phantom" pain is also real. It's a person's brain misinterpreting signals from their spinal cord about a body part or parts. In the case of phantom pain, it's parts which have been actually been detached from the body. In my case, it's my brain misinterpreting signals from my remaining spinal cord about my body below the level of my injury which, despite remaing attatched to my body, have been disconnected (detached) from my spinal cord by the injury. In both cases, the areas in the brain which correspond to the areas of the body in question remain and, because of the lack of normal nerve signals from those body areas, interpret the messages from the spinal cord about those body areas as pain.
    Alan

    Proofread carefully to see if you any words out.

  7. #7
    I didn't mean to infer phantom pain is not real, apologies to anyone I may have dissed. But Alan, you and I still have the nerves intact but the traditional link is broken and fucked up so in a ketamine coma, the damage that continues to generate all sorts of shit in the system after reboot is still there and active.

    In a severed limb the brain remembers yes. But the ketamine coma can work as when the brain resets there is nothing there to reconnect to so it has a reasonable probability of working, nothing fucked up generating acids and shit that find their way to the brain etc as we have.

    ket

  8. #8
    ket,
    you tried the ketamine pain relef coma right?. didn't work i guess. when one realizes how amazing anesthesia is, with the amnesia it produces, otherwise we all would be having ptsd type brain injuries from the surgery.
    I would like to try the ketamine coma, disconnect those pain paths,
    cauda equina

  9. #9
    Quote Originally Posted by metronycguy View Post
    ket,
    you tried the ketamine pain relef coma right?. didn't work i guess. when one realizes how amazing anesthesia is, with the amnesia it produces, otherwise we all would be having ptsd type brain injuries from the surgery.
    I would like to try the ketamine coma, disconnect those pain paths,
    mmmm I was turned down for the coma. Per the Researcher, in all trials there was no efficacy for Central Pain, my doc asked for a compassionate exemption but it was turned down. I was prescribed ketamine with no efficacy, dosed til I went into the K hole with nothing.

    sounds good, seems best for phantom limb, mastectomy.

    I'm not current it was a while ago

    ket

  10. #10
    i have neuropathic pain from cauda equine syndrome, plus a diagnose of crps/rsd
    central pain is different,even though i thought it was the same but information that des posted explained the CP

    i need a endocrinology dept that takes WC and is is familiar with long term pain management effects and a Doctor to consult about a Mace procedure,preferably one that performs a lot of mace on soon to be 60years olod adult.
    mount Sinai is failing me.
    but i barely have enough good days to research this,

    plus my WC carrier causing me problems, calling my psychiatrist office and telling them to arrange for a drug test for me.
    I find that disturbing and i believe it has affected the doctor patient relationship.
    cauda equina

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