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Thread: Deviceomania

  1. #1

    Deviceomania

    My earliest hope (unsuccessful) at a cure for Central Pain was the alleged cure by deep brain implants, ie electrodes placed in the thalamus. Those of you with severe burning dysesthesia understand why we are so susceptible to extreme attempts. When you are drowning you will reach out for anything, even if it turns out to be another person who is also drowning.

    Traveling out of the U.S. and expecting to return with wires coming out of my skull, the doc there informed me that after a large series he had concluded such deep brain implants do not work. Since then have come published papers with hopes of pain cure with magnetic or transcranial DC stimulation (not clear why DC current should work better than Alternating Current) and also removal of brain parts in the parietal/insula area (leukotomy). I also tried magnetic stimulation of the brain for my central pain, but with no benefit. I have watched people report various devices that were tried for pain relief, but so far no one seems to have found the holy grail. I wonder just how much radical procedures, often involving devices, really help.

    Currently, device makers are pushing a catheter to go to the renal vessels, designed to destroy sympathetic nerve endings. Although thousands have had this done, and the manufacturer claims 30 mm Hg reduction in blood pressure, other studies have found maybe 10 mm Hg reduction and wonder if that is just due to ablation of "white coat effect" where patients are made nervous in the presence of a bunch of people in white coats and ablation of sympathetic nerves keeps their nervousness from acting on their kidneys.

    I am trending toward skepticism. If something sounds extreme, I look to see if it is a desperate bunch of patients with nothing but hope and clinicians willing to try anything. I sincerely hope I am wrong, but device manufacturers seem to want to stimulate everything nowadays, and I wonder if my old experience with deep brain implant electrodes presaged what is going on with electrodevices which keep showing up. As for brain removal, I would need double blind studies of the first order even to consider it. Our pain drives us crazy, and then we drive our doctors crazy, and basically it is time for the biochemists to find a way to block nerve injury pain transmission with a good pill. So for the present, I am not consulting Dr. Frankenstein with his lightning device to make me well. In fact, considering that some of my pains are lightning pains, that sort of thing should perhaps be avoided. If someone should prove me wrong, I will be more than delighted to stagger out of the lab while those around me declare "It's Alive!", but for now I am just not that into devices.
    Last edited by dejerine; 04-05-2014 at 01:27 PM.

  2. #2
    Dejerine - what about trying full anesthetic Ketamine infusion. Not just going on a daily dose, but I guess some pain management people are inducing general anesthesia (I don't know what the protocol is - how much, how long)? And there is some sore of reset. Sounds like Gobblety Gook but who knows?
    I don't think Bollefen had this done. Correct me if I am wrong, Bill.
    I am tempted to do it and I did have an inguinal hernia surgery a year ago and asked the local gassers in town about it but no one knew how to administer it, so I let the idea go.

  3. #3
    i tried to have it done. 2 issues, first cost. essentially 3-4 days, deeop coma, intubation,etc, deemed way out there expiramental, so ins denied it. Second, finding someone to do it. my pain doc's close friend was running a study on the protocol, not for CP. my doc asked for a compassionate exemption. the primary for thr study contacted my doc and had the courtesy to reach out directly,
    .
    In none of his work was there any anectotal, less real hard factual information that it could/might work. he basically said no chance. he felt CP is a failed healing miswiring issue that was permanent and the ketamine protocol was successful where the injury was more in the phantom pain area, showing very significant promise and high efficacy. he noted there were a significant number of patient who suffered significant adverse incidents from amnesia, to autonomic issues where the "reset" was incomplete. so between zero efficacy in his studies in CP along with the adverse incidents he would not risk it.

    thi is my old pain doc i need to see but obamacare so fucked his practice you pay in full and in thr unlikely event he gets insurance payment they'll reimburse you and with my out of pocket at over $10k so far in 2014 he's a wish right now.

    insurance companies are disallowing the entire procedure if part is off label, e.g. the clonodine in my IT pump, off label for IT CP had themm disallow my fist 2 pump fills. fighting with them on this and expecta a partial win, they'll pay the procedure and the baclofen but not the clonidine or the compuonding cost. I'm getting concerned over my ability to pay for my treatments under the new rules, was going to ask if anyone else is having issues. At my last visit the waiting room was a buzz with similar anomolies. gettig worried, back in Thursday and wondering what it will cost. sorry the digression.

    anyway not sure you'll find much down the ketamine alley, good luck.

    ket
    Last edited by ketamine kitty; 04-02-2014 at 03:30 AM.

  4. #4
    i think smth and wesson have the best permanent deep brain therapy for CP.

    in a really frighteningly bad way again, and getting weary. new images look like shit will have the full report this week but 2 mor ruptured lumbae discs ans my cervicalopeneing is growing in and compressing the cord at the c23 level wit 2 more bulging discs compressing the cervical cord. too old for this shit. dont think i can manage anymore interventions and frankly the possibility of the CP extening up is unthinkable i could not live that way.

  5. #5
    Thanks KK for the info on ketamine infusion.
    Sorry you aren't mysteriously getting better...

  6. #6
    Senior Member alan's Avatar
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    Quote Originally Posted by ketamine kitty View Post
    i think smth and wesson have the best permanent deep brain therapy for CP.

    in a really frighteningly bad way again, and getting weary. new images look like shit will have the full report this week but 2 mor ruptured lumbae discs ans my cervicalopeneing is growing in and compressing the cord at the c23 level wit 2 more bulging discs compressing the cervical cord. too old for this shit. dont think i can manage anymore interventions and frankly the possibility of the CP extening up is unthinkable i could not live that way.
    I've got it about to the base of my neck now. I'd like to cut my head off, but my brain would still have the same sensations my head could somehow be kept alive, so the beheading would have to be fatal. Okay by me.
    Alan

    Proofread carefully to see if you any words out.

  7. #7
    Well, open mouth and insert foot. Even as I commented adversely on the promotion of electrical shocks for central pain, certain researchers were schooling me insofar as motor impairment, which I should have thought to consider in the discussion.

    Those associated with the Christopher and Dana Reeve Foundation have reported that electrical stimulators in the epidural space allowed some voluntary movement in those who are completely paralyzed and insensate. Thus, I must qualify some of my negativity by limiting my comments to pain relief.

    It is particularly noteworthy that this movement is reported to be voluntary. Whether this refers to conscious use of the stimulators, or whether it is more or less spontaneous, remains to be seen, but this is very good news, although quite preliminary. So far no reports convince me this method has application to the restoration of sensation, nor the elimination of pain. Still, it is nice to see people who do not like to give up on the SCI patient.

    Had I known this work was so far progressed, I would have thought twice about commenting adversely on devices. Don't want to cast the general area of research in a bad light.

  8. #8
    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.

  9. #9
    Jon,

    I am not familiar with full dose ketamine infusion for central pain, but thank you for the note. Are you in possession of any references?

    I did have something similar done with other agents (opioids) years ago, but it was not helpful. When I have had anesthetic for surgery, the burning was present on awaking. What is the mechanism physiologically for extending a temporary anesthesia to something more permanent?

    P.S. Keep up the great activity photos. I find them motivational.
    Last edited by dejerine; 04-08-2014 at 07:34 AM.

  10. #10
    dejerine,

    I cannot comprehend CP to the top of my head. you know my complex modalities, do you have those other issues as well?

    re wires in the head, i've had so mny issues with my mdtrinics dorsal stim and now my PTM for my IT pump which does help some for the serios spasms, I would really be concerned about device failure and its implications. Sitting here this AM with the 3rd non functionsl PTM since Oct 2012. any insight into frequency of device failures, always get a smile from the rep saying the base dose is till functional whlie bent up like a pretzel or rigid like a ruler.

    Seriously, I am as concerned about device integrity as the delicste nature of the surgery and potential failures. I go to Beth Israel and a shocked at the device failure statistics from fellow patients. I recognize I have no choice but seriously?

    ket

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