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Thread: Deviceomania

  1. #11
    Bollefen

    I don't want you to think anything posted here is medical advice. It is not. Obviously I do not know the details of your condition and am not a professional and so cannot comment beyond just trying to show some empathy or concern. Just trying to relate my own experiences as a patient. Truly, you should have ongoing help from a therapist. You cannot rely on us here for very much beyond simple human concern. You might very well need to have something done which was not helpful in my case. So don't rely on anything I say.

    Shakespeare said, "The bearer of evil tidings hath but a losing office." Yet, I have accepted that I now fill the office of crank, having been through a number of unsuccessful procedures. It has turned out in the long run that those who helped me most were those who promised least. My motivation is not to complain, but to save some poor wretch from dashing themselves against the rocks for disappointment, having been made to feel it is their fault for not responding to a treatment large in cost but small in benefit.

    Yes, I am quite familiar with the multimodal pains you describe, plus a few more you do not mention but most likely have, although I prefer the terms neuropathic and nociceptive. And unfortunately, the dysesthetic burning extends not only to the top of my head, but is also inside my nose and mouth, and is at its most intense there, except for my feet. It is at the extremes of the body where the dysesthesia tends to be the most severe, at the distal parts of the nerves. I cannot remember what touch feels like since it no longer exists and has been replaced with an alien burning, which serves in the place of touch. This is why I say it is dehumanizing.

    The fortunate patient at the hands of the highly advanced and informed researcher does not translate into the general medical population. Hence, one device somewhere does not confer legitimacy on all devices everywhere. The efficacy of an electrically powered cardiac pacemaker does not support the value of an electrical stimulator placed in the spine for pain, unless there is actual data.

    Disabled people tend to be impoverished, and my earlier remarks arose from the idea that we must be particularly certain we are able to offer benefit before asking a person to divest themselves of what little funds they have left if there is no hope of replenishing those funds, unless the probability of benefit is high. Otherwise we kill not only their pocketbooks but their spirit in disappointment.

    Those in pain are particularly vulnerable to an offer of an expensive device since rationality does not govern the actions of someone in intense pain. Rather, they tend to let reason fly to the wind, mortgage the house, and buy into some expensive and unproven treatment. The disgust of the family at the constant complaint of pain is compounded by this irresponsible financial behavior. This may destroy the family, which may be the main thing the pain patient has going for them.

    When citing the problem with devices, perhaps I should have said "expensive, unproven" devices.

    The secret to surviving Central Pain, if there is such a secret, IMO, is to conserve, not to spend. Conserve everything. Save your energy, your desires, your social efforts, everything. In particular, lower your expectations of yourself so you do not burn out. Burning out is not a good way to survive Central Pain. Avoid stressful situations, accept a more limited set of goals, a much more limited set of goals. And chasing after a rainbow of devices is not a good way to conserve things, until such time as the manufacturers have data to back up their claims.

    Even if you have the motor ability to do something at extreme cost of pain, does not mean you have the sensory and emotional ability to do it, and you should not run faster than you have strength, figuratively speaking. If your fondest hope is that you might find a sheet under which you can sleep and a mattress which you can endure, don't set as a goal to cure cancer or win a Nobel prize.

    A person may desperately want to hear that a cure is just around the corner, behind a device. But thrashing around for a cure, if there is none, is a waste of energy, money, and hope. If hope is focused on limited goals, such as a realistic and effective way of dealing with those around us, trying to find better sleeping arrangements, suitable clothing, temperature control, eliminating society's superficial values, avoiding the skeptic who questions everything about our condition, the smaller victories which are achievable, we may just make it.

    If you are stuck on a raft, don't believe it if someone says they can serve you up a four course meal. You will be eating cabin biscuits and getting your moisture from the flesh of fishes you catch if you wish to survive. I don't have to tell you that it is not easy. I understand the attitude to "go for it". I just don't happen to think it is applicable for central pain. Rather, I think accepting limited resources and allocating them sparingly is a better approach. I also understand frantic, but consider it a way of disabling rational thought.

    You have been kicked out of the human race, as it were, but in your state, you can kick the devils out of your hell, and try to make it liveable. Music, photography, art, grandkids, Justin Bieber. Just kidding.
    Last edited by dejerine; 04-08-2014 at 12:01 PM.

  2. #12
    Hi Dejerine

    thoughtful post, thank you. I really rely no one for advice anymore save 1 NYC doc who essentially said nothing can be done we'll work on the bits we can. So some of my commentary is tangentially related to your posts. e.g. deep brain stim etc. I think it mostly folly and too much placebo and not enough extreme cases being worked on.

    For all I've done/tried the IT baclofen helps manage the spasms and I could not tolerate an oral dose that worked and it is measurable in terms of help. 14 years in this August I think and 1 procedure that was worth it. And I definitely fell into the try any/everything trap. Also with the zero bank account and disenfranchised family cause as my brother so politely put it "your life sucks not mine you can't do shit, we can, and frankly you've turned into an asshole"

    I thought/think I have marginal nociceptive lumbar pain relief from the epidurals, but we'll see how long it lasts and if it was placebo. Last injection was Thursday past and I am near back to where I was before the first of the 3. The mind can be strong but for how long, I fear placebo.

    I have realized that this is not a battle that can be won but at best endured.

    Unfortunately my personality pushes me too hard to do and I fully recognize my complicity in my horrific state, I have met the enemy and it is me.

    enough whine I'm going to play with my dogs and get some peace. But God, you can't let this go it is so aggressive.

    I stopped coming for a while, kills me to see the newbies come in desperate and na?ve and breaks me to read the "family's" latest issue, but I also realized at least here we "get it".

    You have been kind to me and our group, thank you

  3. #13
    Senior Member alan's Avatar
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    Quote Originally Posted by dejerine View Post
    Alan

    It makes me cringe to read of your condition. I might note that Central Pain in me does in fact go up to the top of my head. Complete deprival of any area of the body whatsoever of normal sensation, with the imposition of burning in all areas to replace touch is demoralizing and dehumanizing. Still, I truly lament the passing of your mother. I don't know how you do it.
    I don't do anything but sit home, for the most part. I'm always telling my shrink how incompetent I feel compared to the pained folks with who I converse who have, and have had, actual lives, and aren't almost fully dependent as I am, and have been. I'm almost embarrassed to visit here, because of that feeling of being so far from what a C-5 potentially can be. She tries to disabuse me of that notion (I hope this is grammatically correct) with no success. Even before injury, I never had a great self image, because I was the short, lisping, klutzy, late entering puberty kid who got picked on a lot (when I got my driver's license, at 16, I was 4' 9' and 86 pounds in 11th grade - always the shortest boy in my grade. Short parents' genes.)

    I don't know how you manage, with CP everywhere. I worry about the pains ascending, paralysis ascending (even though my upper little syrinx at C-4 is not changing, according to MRI, and the C-6 one is barely changed over a 12 year period - only the scar tissue between them changes) and affecting my breathing, winding up in a nursing home (though I have a friend who owns 16 of them), and a few other things.
    Alan

    Proofread carefully to see if you any words out.

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