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Thread: Epidural Implant Purchase

  1. #11
    Thanks Matt Bellman for your inputs. Many desperate situations may considered going to do this implant hoping to improve their everyday life including me. I don’t know how long we have to wait until something help us. We might not outlive the wait. Probably that’s one of the reason for people to take risk hoping their life will change for the better.

  2. #12
    Quote Originally Posted by steve nguyen View Post
    Thanks Matt Bellman for your inputs. Many desperate situations may considered going to do this implant hoping to improve their everyday life including me. I don’t know how long we have to wait until something help us. We might not outlive the wait. Probably that’s one of the reason for people to take risk hoping their life will change for the better.
    I totally understand and would probably do the same if I were in your position. Just be sure to factor the risks into your decision making process. I know a bit about stimulation and can try to answer any questions on that track.
    Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

  3. #13
    Quote Originally Posted by Matt Bellman View Post
    I totally understand and would probably do the same if I were in your position. Just be sure to factor the risks into your decision making process. I know a bit about stimulation and can try to answer any questions on that track.
    The way I understand it the placement for pain is or can be very similar to what is done for SCI. What prevents someone having it implanted for pain, which most of us have, and any SCI related benefits would just be a secondary benefit? Obviously, this is where the settings come into play. The settings got pain might not be what is needed?

    Pain is subjective and there isn’t any way to really prove it. The process for the pain one requires to wear a temp one for a few days and if you say it improves your pain, then it’s covered. The implant devices range from $15-30K, people are paying up to $80K in Thailand.

  4. #14
    Quote Originally Posted by Lyerly View Post
    The way I understand it the placement for pain is or can be very similar to what is done for SCI. What prevents someone having it implanted for pain, which most of us have, and any SCI related benefits would just be a secondary benefit? Obviously, this is where the settings come into play. The settings got pain might not be what is needed?

    Pain is subjective and there isn’t any way to really prove it. The process for the pain one requires to wear a temp one for a few days and if you say it improves your pain, then it’s covered. The implant devices range from $15-30K, people are paying up to $80K in Thailand.
    Even if the placement were the same, the stimulation output by pain stimulators is designed to block nerve signals. The kind of stimulation you want needs to activate nerves, not block them. So, at the very least, it would also need to be programmed to meet your needs. This brings us back to the fact that it's unclear exactly how it should be programmed, and you'd need to get someone to program it appropriately.
    Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

  5. #15
    Quote Originally Posted by Matt Bellman View Post
    This brings us back to the fact that it's unclear exactly how it should be programmed, and you'd need to get someone to program it appropriately.
    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.

  6. #16
    Quote 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

  7. #17
    Quote 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.

    Quote 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.

    Quote 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.

    Quote 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.

  8. #18
    Quote 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.

    Quote 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.

    Quote 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 at 11:59 AM. Reason: typo
    Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

  9. #19
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    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.

  10. #20
    Quote 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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