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When will Epidural Stimulation ever be brought to the masses?

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    When will Epidural Stimulation ever be brought to the masses?

    I'm just really upset the way the whole thing with the trials for the Epidural Stimulation has been handled. Here's something that could the way it has been described be helping a real lot of people NOW, I'm sure there is a way to get special FDA Approval going through the proper channels, but nope, they have to raise as much funding as possible for the current trial that ends in 2020, a lot of people involved make huge salaries off the said funding. I would not be surprised if they go into another trial after the one in 2020 is completed and raise yet more funding. I've seen this scenario play out time and time again over my 35 years of SCI. If Epidural Stim really works so good, get it to the people now, we all are not getting any younger. I signed up for the trial, donated a bunch of money to both Louisville and CR Foundation, never heard anything, just get a bunch of junk mail now from all these guys looking for yet even more money. Why bother? As you can tell I'm pretty emotional on this topic, but have good reason to be. Heck if this thing could do for me what was described in the four people who had the Stim unit placed in them I'd be very happy. I just don't see it ever happening. Of course when you talk to these people they will reassure you it's possible and all that jazz. Ya right. Here it is, the first implant was done in 2009 on Summers and he had good results according to the article http://espn.go.com/espn/otl/story/_/...world-baseball was over 6 years ago. Heck even if it did not work out in people and it was implanted vs surface stim as they say they are working on, it could simply be removed. What's the big deal. So 6 years wasted and 4 more to go with the current trial, can you see why I think it will go on at least another 10 after the current 10 years coming up in 2020? But in answer to the original poster, yes, it sounds great and all, just no telling when in the heck it will become available if ever, I've seen so many things like this that were hyped fall by the wayside the past 35 years.
    Last edited by Curt Leatherbee; 13 Feb 2016, 2:56 PM.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

    #2
    You have seen or heard about other devices, or therapies in the past, actually used in humans to treat SCI. That were actually approved by the FDA under reputable reasearchers?? I hate to assume but you most certainly have not! The only option would have been gerons trial. Which showed next to no result and was openly aborted!

    Comment


      #3
      Yes I have, Omentum Transportation comes to mind, there was a special FDA approval given for that to try in 50 test subjects at Boston Medical Center Massachusetts. The Vocare device, Special FDA permit for that. Ampyra (also known as 4ap) was approved for MS with a off label for SCI, there was much talk about it years ago on these forums, many people tried it. FES was said to improve SCI, it was approved. The list goes on, I'm sure others can think of more.
      Last edited by Curt Leatherbee; 13 Feb 2016, 1:15 AM.
      "Life is about how you
      respond to not only the
      challenges you're dealt but
      the challenges you seek...If
      you have no goals, no
      mountains to climb, your
      soul dies".~Liz Fordred

      Comment


        #4
        Originally posted by Curt Leatherbee View Post
        I'm just really upset the way the whole thing with the trials for the EPI Stim has been handled. Here's something from the way it has been described that could be helping a real lot of people NOW, I'm sure there is a way to get special FDA Approval going through the proper channels, but nope, they have to raise as much funding as possible for the current trial that ends in 2020, a lot of people involved make huge salaries off the said funding. I would not be surprised if they go into another trial after the one in 2020 is completed and raise yet more funding. I've seen this scenario play out time and time again over my 35 years of SCI. If Epidural Stim really works so good, get it to the people now, we all are not getting any younger. I signed up for the trial, donated a bunch of money to both Louisville and CR Foundation, never heard anything, just get a bunch of junk mail now from all these guys looking for yet even more money. Why bother? As you can tell I'm pretty emotional on this topic, but have good reason to be. Heck if this thing could do for me what was described in the four people who had the Stim unit placed in them I'd be very happy. I just don't see it ever happening. Of course when you talk to these people they will reassure you it's possible and all that jazz. Ya right. Here it is, the first implant was done in 2009 on Summers and he had good results according to the article http://www.reuters.com/article/us-sc...A3707J20140408 This was over 6 years ago. Heck even if it did not work out in people and it was implanted vs surface stim as they say they are working on, it could simply be removed. What's the big deal. So 6 years wasted and 4 more to go with the current trial, can you see why I think it will go on at least another 10 after the current 10 years coming up in 2020? But in answer to the original poster, yes, it sounds great and all, just no telling when in the heck it will become available if ever, I've seen so many things like this that were hyped fall by the wayside the past 35 years.
        I believe UC San Diego is implanting the epidural stimulator in patients who have some lower limb movement. One of the members of this forum got a trial implant in December. Look for alhavel's post. (I hope he gives us more news soon.)

        Comment


          #5
          Here's the UC San Diego link:



          Comment


            #6
            And here's the link to the previous discussion on this forum:

            http:///forum/showthread.php?251762-...7-e-stim/page4

            Comment


              #7
              But at least one or two of the first five were complete were they not?

              Agree with Curt. James we have seen it over and over.

              Curt why not write an impassioned plea that you have waited 35yrs and time is running out? Be nice to see an ole timer get it and how it would affect you - as a rep of CareCure or something. I'd sign a letter of support out of curiosity alone! It would make me feel more hopeful because shit's pretty bleak right now and I am just waiting for it all to be over.
              Last edited by lynnifer; 13 Feb 2016, 2:57 AM.
              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

              Comment


                #8
                By the way, I realize they can't favour a person in a trial.

                I'm still waiting for them to perform this procedure on a female. Why five men and no women?

                It would be nice to get a cross section of differing ages and lengths of time paralyzed but we aren't running the trial so?

                I won't see this in my lifetime. I have an appointment with an infection specialist next week and am contemplating refusing treatment if it means another PICC line 13yrs later. I just can't do it. I'm tired.

                Unable to work due to complications. Worked so much I never developed close friends outside work. Nor hobbies. Not well enough to travel. Not close with family and no children.

                There's nothing left for me to do in this life. No regrets, other than wasting 13yrs with the wrong guy who promised a family. I'm just existing and wasting money at this point.
                Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                Comment


                  #9
                  No one would miss me when I was gone. The sadder thing is that I would miss no one either. I am incapable of trusting another human being. . Even humanity as no one gave a damn that a 12yr old lived her entire life paralyzed.

                  Freaking arrested development. lol

                  Sometimes I hate my humour.

                  Re trust ... I had looked into the BDSM thing as a way to work on my trust. I couldn't follow through despite many opportunities.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                    #10
                    Originally posted by lynnifer View Post
                    No one would miss me when I was gone.
                    Not true...Your adorable dog would miss you!

                    Comment


                      #11
                      Jen you need to find something to live for, some kind of interest, a passion. Mine became sports and I really miss it for now, I had bladder surgery about 5 weeks ago and am still having some complications so sports for now is out of the question, but we as humans are great at adaptability, like how people even very severely disabled can adapt. Reason I started this post is I just hate the way things are handled with the whole SCI research thing. Something so simple as the Epi-Stim device should be brought to the masses of Spinal Cord Injured people as soon as possible, not test and test and more test. Even if the more fancy unit is not available with the mulit zillion channels, just bring what worked for those 4 guys in the trials to the masses. We all want better lives and some of us have been waiting a long time.
                      Last edited by Curt Leatherbee; 13 Feb 2016, 2:11 PM.
                      "Life is about how you
                      respond to not only the
                      challenges you're dealt but
                      the challenges you seek...If
                      you have no goals, no
                      mountains to climb, your
                      soul dies".~Liz Fordred

                      Comment


                        #12
                        Here's a typical emailing I get from the CR Foundation.https://www.kintera.org/site/c.ddJFK...CEC74C076E3BD0 Anybody want to guess what the CEO makes a year? A good portion of my $$$ would be going to pay for his great lifestyle if I were to contribute more. It goes on and on.
                        "Life is about how you
                        respond to not only the
                        challenges you're dealt but
                        the challenges you seek...If
                        you have no goals, no
                        mountains to climb, your
                        soul dies".~Liz Fordred

                        Comment


                          #13
                          Well CR Foundation is at 58 Percent of the goal, once at 100 percent what happens? It's been going at least a couple years. I know the trials don't end until 2020. What then a Big Idea part 2 to raise another chunk of money over 6 years? http://www.reevebigidea.org
                          "Life is about how you
                          respond to not only the
                          challenges you're dealt but
                          the challenges you seek...If
                          you have no goals, no
                          mountains to climb, your
                          soul dies".~Liz Fordred

                          Comment


                            #14
                            I don't even know why I get in such a huff over all this, does this not simply look like the initiation of spasticity? http://www.reevebigidea.org/the-research When I'm laying down (been this way for near 35 years) if I arch my back just a tiny bit my legs jump the same way as in this video. The electricity from the stimulator is simply creating more excitability of the reflex arc and causing the spastic movements in the legs, I can see it plain as the sunshine will rise tomorrow mourning.
                            "Life is about how you
                            respond to not only the
                            challenges you're dealt but
                            the challenges you seek...If
                            you have no goals, no
                            mountains to climb, your
                            soul dies".~Liz Fordred

                            Comment


                              #15
                              I welcome any of the four who have had the Epidural Stimulation Implant (I'm sure there are more out there now than that) to come onto the forums and discuss things. Where do things stand right now? We will listen with open ears and not be subjective or demeaning. We all just seek the truth.
                              "Life is about how you
                              respond to not only the
                              challenges you're dealt but
                              the challenges you seek...If
                              you have no goals, no
                              mountains to climb, your
                              soul dies".~Liz Fordred

                              Comment

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