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  • Epidural Implant Purchase

    Has anyone ever heard of any surgeons in the USA that will implant SCI patients? It?s just an off the shelf pain stimulator and the surgery is not complicated and can even be 30-60 mins outpatient. Obviously optimizing the settings could be the biggest challenge. I would think you could get it put in for pain in the eyes of insurance and who would dispute that we have this pain.

    its become evident to me that some of the bigger researchers doing this do not seem to have much intention or motivation to take this to clinic to actually help us. I don?t want to and won?t go to Thailand but would love to find someone to do it in North America.

    Just one benefit of anything even as minimal as better bladder capacity resulting less cathing and UTIs justify it. The implant itself is not even expensive.

  • #2
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    • #3
      Originally posted by Lyerly View Post
      Has anyone ever heard of any surgeons in the USA that will implant SCI patients? It?s just an off the shelf pain stimulator and the surgery is not complicated and can even be 30-60 mins outpatient. Obviously optimizing the settings could be the biggest challenge. I would think you could get it put in for pain in the eyes of insurance and who would dispute that we have this pain.

      its become evident to me that some of the bigger researchers doing this do not seem to have much intention or motivation to take this to clinic to actually help us. I don?t want to and won?t go to Thailand but would love to find someone to do it in North America.

      Just one benefit of anything even as minimal as better bladder capacity resulting less cathing and UTIs justify it. The implant itself is not even expensive.
      Hey man there is a doctor here that implants a lot of those spine stimulator’s. He is a pain doctor. Not sure how much further he would go but it’s worth a phone call.

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      • #4
        You are unlikely to find a legitimate surgeon who would implant a device for or with other than it's FDA-approved purpose or method. Their liability insurance company would most likely cancel their policy, and they would leave themselves open to sanctions from their licensure board. Only within an FDA-approved clinical trial would this be allowed.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          Originally posted by SCI-Nurse View Post
          You are unlikely to find a legitimate surgeon who would implant a device for or with other than it's FDA-approved purpose or method. Their liability insurance company would most likely cancel their policy, and they would leave themselves open to sanctions from their licensure board. Only within an FDA-approved clinical trial would this be allowed.

          (KLD)
          Pretty sad that a an 45 min outpaitent procedure that is based off of decades old technology is impossible to get here in the USA outside of being one of the chosen few for research. The surgery is actually very similar to the ones implanted for pain, it is mostly about the settings and maybe some different placements of the leads. There is no timeline for when this may actually get to clinic and seemingly very little motivation.

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          • #6
            I like to hear other’s opinions . It would be good if this technology improves over time , hopefully by then its doesn’t need to be implanted with battery pack ( I think the less stuffs implant the better). And the Epidural implant is more streamline with the battery enclosure and self charging using the body’s heat. I have a lot of hopes that this technology will help us SCI improves our daily life. It looks very promising.

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            • #7
              https://youtu.be/QjXDaWHr0l0

              I don’t know if this video has posted yet.

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              • #8
                Originally posted by steve nguyen View Post
                https://youtu.be/QjXDaWHr0l0

                I don’t know if this video has posted yet.
                That seems to be about pain management, which is what the existing devices were originally intended for.

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                • #9
                  Originally posted by Lyerly View Post
                  Has anyone ever heard of any surgeons in the USA that will implant SCI patients? It?s just an off the shelf pain stimulator and the surgery is not complicated and can even be 30-60 mins outpatient. Obviously optimizing the settings could be the biggest challenge. I would think you could get it put in for pain in the eyes of insurance and who would dispute that we have this pain.

                  its become evident to me that some of the bigger researchers doing this do not seem to have much intention or motivation to take this to clinic to actually help us. I don?t want to and won?t go to Thailand but would love to find someone to do it in North America.

                  Just one benefit of anything even as minimal as better bladder capacity resulting less cathing and UTIs justify it. The implant itself is not even expensive.
                  Hi everyone, I saw an advertisement of this company whom doing the epidural stimulation in Thailand with the website name Epiduralstimulationnow.com, does anyone knows about this company and has anyone go there for treatments ?

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                  • #10
                    Researchers are doing what they can. Ultimately, it's not their responsibility to bring this technology to market. It's the responsibility of the company that will be selling the stimulators.

                    Implanted stimulators like the ones we're talking about have been demonstrated to be safe and effective for pain. No one has clearly demonstrated that they are both safe and effective for how you want to use them. Doing so requires clinical trials, which requires at least ~$5 million in funding to start. When you factor in everything, you're looking at ~$50 million or more to commercialize epidural stimulation, at the very least. I can tell you from my experience that it's very difficult to raise that kind of money to develop a product for such a small market. That being said, people are working on it. It's just going to take time.

                    It's worth restating that no one has clearly demonstrated that epidural stimulation is both safe and effective and that the benefits outweigh both the costs and the risks. When all those steps are completed, then they will become a commercial reality in the US.

                    Moreover, like SCI-Nurse said, you won't find a decent doctor who will implant the stimulator for anything but pain, but the implant itself is the easy part. As you recognize, the hard part is tuning the stimulation, both in physical placement and in the electrical parameters. Nobody knows exactly how that should be done yet, and it's unlikely you'd be able to do that yourself.

                    Believe me, I share your frustration with the pace of development in this industry.
                    Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

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                    • #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.

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                      • #12
                        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

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                        • #13
                          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.

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                          • #14
                            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

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                            • #15
                              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.

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