Results 1 to 5 of 5

Thread: Confused about epidural stimulation... Need input from people that actually have it

  1. #1
    Senior Member lunasicc42's Avatar
    Join Date
    Oct 2004
    Location
    Lutz, Fl USA*********C456
    Posts
    2,329

    Confused about epidural stimulation... Need input from people that actually have it

    over the recent years I have read articles that epidural stimulation is a true hope and can restore this, that and other functions but when I actually talk to people that have undergone it and have participated; I am only told of very minimal gains, like I will ask about it's effect on bowel /bladder and sexual function, not once have I had a participant tell me that they had no bowel bladder or sexual function before treatment and that they regained those functions with treatment, which is opposite from what internet articles always say... Who here has undergone epidural stimulation and will talk about it?
    Or they say that they already had bowel /bladder function prior to treatment. So where is the success stories actually coming from the mouths of participants? ... any here? (not thailand )
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  2. #2
    I'm kind of with you on this. All those original dudes from the Reeve's deal, that have had their stims for several years now, still use their wheelchairs daily. I'm wondering how they would really say it's changed their lives, when not in front of a camera.

  3. #3
    Senior Member lunasicc42's Avatar
    Join Date
    Oct 2004
    Location
    Lutz, Fl USA*********C456
    Posts
    2,329
    Quote Originally Posted by Barrington314mx View Post
    I'm kind of with you on this. All those original dudes from the Reeve's deal, that have had their stims for several years now, still use their wheelchairs daily. I'm wondering how they would really say it's changed their lives, when not in front of a camera.

    I mean, in theory, it Sounds like it could be a thing... But when I talk to actual participants, they only speak of very modest results
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  4. #4
    Senior Member
    Join Date
    Apr 2016
    Location
    Cincinnati, Ohio, USA
    Posts
    2,553
    My opinion is that Harkema's media blitzes are undermining the credibility of the technology. While it's sensational to say you made a paralyzed person stand or walk, the truth is very far from what most people take-away from the Harkema marketing machine. The facts are that incomplete SCIs will likely regain some function using either epidural or transcutaneous stimulator. It might be moving a foot or it might be better trunk stability, but it will not be anything remotely resembling full recovery. Those who put in serious hours at PT with the stimulator might see even bigger gains, but not anything like full recovery.

    If you're complete you could see zero impact. In fact, what is interesting to me is that it seems Harkema has never had an implanted stimulator that didn't produce results. That's not likely since I know of quite a few who got no results. But we're supposed to believe that the 2 or 3 or 5 people who got some form of recovery were the only subjects in the study. Zero failures. Ever.

    Yeah, call me skeptical.
    T3 complete since Sept 2015.

  5. #5
    Quote Originally Posted by Mize View Post
    My opinion is that Harkema's media blitzes are undermining the credibility of the technology. While it's sensational to say you made a paralyzed person stand or walk, the truth is very far from what most people take-away from the Harkema marketing machine. The facts are that incomplete SCIs will likely regain some function using either epidural or transcutaneous stimulator. It might be moving a foot or it might be better trunk stability, but it will not be anything remotely resembling full recovery. Those who put in serious hours at PT with the stimulator might see even bigger gains, but not anything like full recovery.

    If you're complete you could see zero impact. In fact, what is interesting to me is that it seems Harkema has never had an implanted stimulator that didn't produce results. That's not likely since I know of quite a few who got no results. But we're supposed to believe that the 2 or 3 or 5 people who got some form of recovery were the only subjects in the study. Zero failures. Ever.

    Yeah, call me skeptical.
    She lost funding specifically because she wasn't reporting negative results -- she only reported positive results. https://kycir.org/2016/07/11/top-u-o...ralysis-study/
    Co-founder & CTO of MYOLYN - FES Technology for People with Paralysis - Empowering People to Move

Similar Threads

  1. Does Epidural Stimulation help you walk better?
    By mj23 in forum Exercise & Recovery
    Replies: 8
    Last Post: 06-18-2018, 11:04 AM
  2. Epidural stimulation question
    By lunasicc42 in forum Cure
    Replies: 10
    Last Post: 02-07-2017, 08:28 PM
  3. New post about the Epidural Stimulation
    By Barrington314mx in forum Cure
    Replies: 45
    Last Post: 10-27-2014, 09:54 PM
  4. Epidural Stimulation
    By Skipow in forum Cure
    Replies: 1
    Last Post: 10-28-2013, 12:09 PM
  5. Epidural stimulation?
    By cgtreadw in forum Science, Medicine, & Technology
    Replies: 0
    Last Post: 05-20-2011, 10:47 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •