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  • #16
    Originally posted by niallel View Post
    I imagine a good place to start would be the work shown in any of the many papers on this, like this: https://www.nejm.org/doi/10.1056/NEJMoa1803588 - how to do it is in the supplemental section.

    It's not "unclear", it may not be optimal, but something is better than nothing. While they will go for perfection, we have nothing.
    I agree wholeheartedly that something is better than nothing. That said, I'm not sure this is the something you're looking for yet.

    There is some controversy surrounding Harkema's research, so I would be especially critical of her publications. But yes, you are right that the paper does describe one way of programming the stimulator. The paper describes four patients. Two achieved walking function, two gained some ability to maintain standing and seated posture, and one had a hip fracture. So, after surgery, fine tuning of the stimulator, and 85 weeks of intense training, based on these results you'd have a 50% chance of significant functional recovery, a 50% chance of minor functional recovery, and a 25% chance of serious injury. From the conclusion of the paper:

    "The current study showed that recovery of walking, standing, and trunk mobility can occur under special circumstances with intensive training and electrical stimulation years after a spinal cord injury that caused complete leg paralysis. Persons with some degree of spared sensation below the level of injury may be more suitable candidates than those with no sensation, but this, and the durability of over-ground walking, requires investigation in larger groups of patients with spinal cord injury."

    Again, you'd be hard-pressed to find a greater supporter of electrical stimulation than me, and I understand that the daily pain of SCI could very well make these risks worth the benefits. I only want to help manage expectations (because, as Barry Munro put it at SCI 2020, researchers and the media are using the word "breakthrough" irresponsibly) and clearly communicate the risk-benefit scenario so that people can make informed judgments.
    Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

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    • #17
      Originally posted by Matt Bellman View Post
      That said, I'm not sure this is the something you're looking for yet.
      I think over 4000 people have applied for Harkema's trials. I think this proves it is something people are looking for now.

      Originally posted by Matt Bellman View Post
      There is some controversy surrounding Harkema's research, so I would be especially critical of her publications. But yes, you are right that the paper does describe one way of programming the stimulator. The paper describes four patients. Two achieved walking function, two gained some ability to maintain standing and seated posture, and one had a hip fracture. So, after surgery, fine tuning of the stimulator, and 85 weeks of intense training, based on these results you'd have a 50% chance of significant functional recovery, a 50% chance of minor functional recovery, and a 25% chance of serious injury.
      I think this is an unfair way of representing the results. Firstly, it doesn't take 85 weeks to see if anything happens, or to start seeing results. This was just how long they did the intense training in the trial. People would see results much sooner, or the clinicians would know if it was going to do anything far faster.
      Secondly, when you say serious injury, the serious injury was not because of the stimulator. It happened in training. My gran fell over and broke her hip - and she didn't have a sci or a stimulator, do we need to do trials on if old people should walk?

      It would be fairer to represent this as 100% of people got some level of recovery. I would take anything, and I'm sure others would too.

      Originally posted by Matt Bellman View Post
      From the conclusion of the paper: "The current study showed that recovery of walking, standing, and trunk mobility can occur under special circumstances with intensive training and electrical stimulation years after a spinal cord injury that caused complete leg paralysis. Persons with some degree of spared sensation below the level of injury may be more suitable candidates than those with no sensation, but this, and the durability of over-ground walking, requires investigation in larger groups of patients with spinal cord injury."
      The problem with this Harkema trial is that it was all about walking. Yeah, that might be the gold standard, but why not let people see what it can recover and move on from there.
      Also you point out a statement that indicates something I don't think anyone was aware of - Researchers always want to do more research.

      Originally posted by Matt Bellman View Post
      Again, you'd be hard-pressed to find a greater supporter of electrical stimulation than me, and I understand that the daily pain of SCI could very well make these risks worth the benefits. I only want to help manage expectations (because, as Barry Munro put it at SCI 2020, researchers and the media are using the word "breakthrough" irresponsibly) and clearly communicate the risk-benefit scenario so that people can make informed judgments.
      I don't know if you know Barry, but he is crying out for someone to bring this technology to the people. He, like me and most others, wants these solutions to be available.

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      • #18
        Originally posted by niallel View Post
        I think over 4000 people have applied for Harkema's trials. I think this proves it is something people are looking for now.
        Sorry, I should have emphasized the something.

        Originally posted by niallel View Post
        I think this is an unfair way of representing the results. Firstly, it doesn't take 85 weeks to see if anything happens, or to start seeing results. This was just how long they did the intense training in the trial. People would see results much sooner, or the clinicians would know if it was going to do anything far faster.

        Secondly, when you say serious injury, the serious injury was not because of the stimulator. It happened in training. My gran fell over and broke her hip - and she didn't have a sci or a stimulator, do we need to do trials on if old people should walk?

        It would be fairer to represent this as 100% of people got some level of recovery. I would take anything, and I'm sure others would too.

        The problem with this Harkema trial is that it was all about walking. Yeah, that might be the gold standard, but why not let people see what it can recover and move on from there.
        This is all true, and it boils down to the risks vs. the benefits. Is the risk of the surgery and months training until you see any results worth the benefit? Is the risk of falling and sustaining a serious injury worth the benefit? Are there other benefits beyond walking that outweigh these risks? You can say you would take anything, but where really is the line where benefits outweigh risks? I would imagine that something like complete recovery of bowel, bladder, and sexual function would be worth any risk, while only recovering the ability to maintain standing posture wouldn't be worth very much risk if that were the only benefit you received.

        These are very difficult questions that don't yet have clear answers, which is a major reason why this technology isn't yet widely available.

        Originally posted by niallel View Post
        I don't know if you know Barry, but he is crying out for someone to bring this technology to the people. He, like me and most others, wants these solutions to be available.
        I have met him, I've heard his desperate call to action, and I have taken it closely to heart. I agree 100%. But, the technology is not fully vetted yet. If we go and implant 1,000 people today and six months from now they need to be recalled because of some unforeseen consequence, it will set the technology back 100 years because of the resulting fear and stigma. Kind of like nuclear power. A few high profile failures and misuse have significantly hampered progress in the field, even though it's incredibly safe and effective.

        Again, I agree with you, but I'm playing devil's advocate to mitigate risk and manage expectations.
        Last edited by Matt Bellman; 03-25-2019, 11:59 AM. Reason: typo
        Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

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        • #19
          I suspect that Harkema and others cherry pick their results. I am aware of at least a few people who've been in epidural stimulator "studies" who were dropped from the study when there were no results. I seriously doubt, for example, that Harkema has yet to implant an ASIA A, but there are none mentioned in her glitzy CNN releases.
          T3 complete since Sept 2015.

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          • #20
            Originally posted by Matt Bellman View Post
            I'm playing devil's advocate to mitigate risk and manage expectations.
            There is no need to play devil's advocate. Time and time again we are told by the establishment why we can't have things.

            We are paralysed, not stupid. If given a list of the risks then we can make our own minds up.

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            • #21
              Thanks again Matt Bellman and Nialle for valuable info. I am seriously thinking about doing this treatment. Since my SCI is result from removing a begnin tumor in my spine, T-11 incomplete, I am wondering if I would have a better chance to recover than others. I have full function of my hands, my left leg still has feeling on top half of leg, no feeling on bottom half, no feeling on both feet. My right leg no feeling at all. I can use my left leg to walk with walker, right leg has KAFO. No BBS. Thanks again.

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              • #22
                Steve, the more incomplete you are the more likely you are to get recovery. You're a great candidate.
                I would suggest, however, trying to get involved with NRT and their transcutaneous stimulator as it might produce similar results without surgery. I think they might be taking new subjects for their trials or upcoming trials. Worth a shot.
                T3 complete since Sept 2015.

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                • #23
                  Originally posted by niallel View Post
                  There is no need to play devil's advocate. Time and time again we are told by the establishment why we can't have things.

                  We are paralysed, not stupid. If given a list of the risks then we can make our own minds up.
                  Wouldn't that be nice?
                  T3 complete since Sept 2015.

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                  • #24
                    Hey Mize, do you have any info or a link on the NRT trial with the transcutaneous stimulator you were talking about. I feel that it may benefit me as well if I am a candidate. Thanks

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                    • #25
                      Originally posted by Mize View Post
                      Steve, the more incomplete you are the more likely you are to get recovery. You're a great candidate.
                      I would suggest, however, trying to get involved with NRT and their transcutaneous stimulator as it might produce similar results without surgery. I think they might be taking new subjects for their trials or upcoming trials. Worth a shot.
                      Thanks Mize for the informations on NRT and their transcutaneous stimulator. I will look into it. Appreciated your input��

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