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Q&A: Epidural Stimulation and Bladder, Bowel, & Sexual Function

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    Q&A: Epidural Stimulation and Bladder, Bowel, & Sexual Function

    There are a lot of other posts about the epidural stimulation trials going on in Louisville, but I thought that this post about BBS (bladder, bowel, sexual function) should have it's own thread.
    I've been in touch with a few people about BBS studies in the epidural stimulation trials. One group that I was in contact with was the NIH - National Institute of Biomedical Imaging and Bioengineering who told me that the BBS has been added into the epidural stimulation trials (https://clinicaltrials.gov/ct2/show/...NA%3AUS&rank=1).

    I then wrote to Dr Harkema who responded immediately and put me in touch with another person on their team to answer my questions. They were very helpful. You can get more of the background to this information on my blog:
    http://stemcellsandatombombs.blogspo...really-id.html Part I
    https://stemcellsandatombombs.blogsp...really-id.html Part II

    The papers which have come out have not dealt with BBS and I understand the reason why. It was an unexpected return, so they never established any baseline before any recovery occurred making some aspects of recovery unmeasurable, for example, like a urinalysis. But restore, return, and improvements have been reported about on news sites and even one of their main sponsor, CDRF reported on their website; "Even more surprisingly, all four participants experienced significant improvements in autonomic functions, including bladder, bowel and sexual function, as well as temperature regulation." Therefore asking the
    the scientists themselves some more concrete information would make sense.

    As I already wrote, I understand that they didn?t measure this return, but learning that the currently included BBS study will be mostly questionnaires, made me decide to write back to the Louisville team with some more concrete questions. BBS return is usually rated at the top of the wish list for paraplegics and very high for quadriplegics too.

    I think that answering my questions, will not break any scientific rules as they are simple below and after questions which can be answered by reporting the state the participants are in now.

    • Do the men still need to need to catheterise themselves?
    • Do they know when their bladders and bowels are full?
    • Do they still need a specific bowel programme with the use of digital stimulation, laxatives, and/or suppositories?
    • Have they had any accidents with bladder and bowel since their trial ended?
    • Do they still need to use any medications to achieve and maintain erections?
    • Are psychogenic erections possible now?
    • Can they experience climax and/or ejaculation?


    Is there anything more you wish to know? Please let me know.

    You can see all the full article and other questions at?
    https://stemcellsandatombombs.blogsp...eturn-and.html
    Last edited by StemCells&AtomBombs; 24 Dec 2017, 2:39 AM. Reason: formatting
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

    #2
    Looking forward to the info you hear, although turn the list upside down in terms of priority for me.

    Just one thing, in your blog you say "So I just don't see how we can expect wide scale use when six years of locomotor training has to go into it just for the end result to be standing up."

    I have heard that with some of the other stimulators its a matter of days to be able to stand up. Remember the trials done so far are done with a stimulator not made for this purpose, while things like NRT are specifically made for SCI. Also remember that being able to stand up is a big deal for people who need a transfer board, carrying a board around just to get in cars is a big restriction on mobility for example.

    Comment


      #3
      Watching this for any response you might get... Thank you for doing this, dennis
      "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

      Comment


        #4
        Thank you Dennis for all your hard efforts! Wishing you and your family a Blessed Holiday season and Healthy New year. Best Regards, Joe

        Comment


          #5
          About the progress going on now with stimulation, we only have what has been reported (that's why I would like more reporting). The standing is relatively new and after many years. Out of other trials I've heard rumours of movement within a little while, but I haven't heard of any functional movement in such a short time.
          I am more than willing to be persuaded about most things and I'd love to be wrong about what functional motor improvement epidural stimulation can bring. It's one reason why I am interested in bbs because it seems the impact is much quicker.
          Im even interested to see what the finetech machine, minus rhizotomy, will look like.
          Originally posted by niallel View Post
          Looking forward to the info you hear, although turn the list upside down in terms of priority for me.

          Just one thing, in your blog you say "So I just don't see how we can expect wide scale use when six years of locomotor training has to go into it just for the end result to be standing up."

          I have heard that with some of the other stimulators its a matter of days to be able to stand up. Remember the trials done so far are done with a stimulator not made for this purpose, while things like NRT are specifically made for SCI. Also remember that being able to stand up is a big deal for people who need a transfer board, carrying a board around just to get in cars is a big restriction on mobility for example.
          Dennis Tesolat
          www.StemCellsandAtomBombs.blogspot.com

          "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
          Martin Luther King

          Comment


            #6
            I asked a while ago about females. They were going to try to recruit someone.

            Why ask about this ‘old tech?’ Seems Edgerton is more advanced?
            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


              #7
              Originally posted by StemCells&AtomBombs View Post
              Out of other trials I've heard rumours of movement within a little while, but I haven't heard of any functional movement in such a short time.
              Likely we will hear about the NRT stuff in public when the trials start shortly. However there are plenty of people on facebook with videos of them with implants from Thailand. I know they aren't so impressive results, but the movement is pretty much within days.

              Originally posted by StemCells&AtomBombs View Post
              I am more than willing to be persuaded about most things and I'd love to be wrong about what functional motor improvement epidural stimulation can bring. It's one reason why I am interested in bbs because it seems the impact is much quicker.
              I agree with you so much, stimulation isn't going to fix anyone but it might give improvements that matter. Also the power of it increasing the signals might be much more beneficial when there are other things that start to do some real repair, but aren't that good on their own.


              Originally posted by StemCells&AtomBombs View Post
              Im even interested to see what the finetech machine, minus rhizotomy, will look like.
              Isn't this implanted FES, you press a button when you want it to contract your bladder muscles?
              Or do they have other products that aren't publicly on the market, do you have links to these things?

              Comment


                #8
                Originally posted by lynnifer View Post
                I asked a while ago about females. They were going to try to recruit someone.

                Why ask about this ‘old tech?’ Seems Edgerton is more advanced?

                Yes dennis, did you consider to attempt to reach out to Edgerton as well
                "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

                Comment


                  #9
                  Yes. I contacted them about a year ago after they had a story in the paper. I asked about BBS and the only thing I got back after repeated tries was that, yes, there had been an impact.
                  The Harkema lab, up until now, has been much more receptive. I hope they're cooperation will encourage other labs to share more accurate information within what is allowed in terms of reporting.

                  Originally posted by lunasicc42 View Post
                  Yes dennis, did you consider to attempt to reach out to Edgerton as well
                  Dennis Tesolat
                  www.StemCellsandAtomBombs.blogspot.com

                  "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
                  Martin Luther King

                  Comment


                    #10
                    Yes. You turn it on and off.
                    But from what is see from the Medtronic version is that it's just constantly running. It's called intrastim2.
                    Originally posted by niallel View Post
                    Isn't this implanted FES, you press a button when you want it to contract your bladder muscles?
                    Or do they have other products that aren't publicly on the market, do you have links to these things?
                    Dennis Tesolat
                    www.StemCellsandAtomBombs.blogspot.com

                    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
                    Martin Luther King

                    Comment


                      #11
                      I don't have any info saying the Edgerton version is any better other than there's no need for surgery. Results wise, I've not seen anything. But I could be wrong.
                      More importantly though is we're already starting to have a conversation about the different types of machines and commercialization BEFORE we have facts about the efficacy. The argument is starting to move away from "is epidural stimulation going to improve function" to "what kind of machine is better". The cart is still way in front of the horse on this. Cdrf has already partnered with the expectation of commercialization before the verdict is in. When companies make an investment they do so with the thought of a return, so I hope we first have the basic information on epidural stimulation before we start making competing machines that then will need to go into people to make their money back. If we get to that point, might as well just go to Thailand or wherever.
                      Originally posted by lynnifer View Post
                      I asked a while ago about females. They were going to try to recruit someone.

                      Why ask about this ‘old tech?’ Seems Edgerton is more advanced?
                      Dennis Tesolat
                      www.StemCellsandAtomBombs.blogspot.com

                      "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
                      Martin Luther King

                      Comment


                        #12
                        Did you see this for Canada?
                        Attached Files
                        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


                          #13
                          Originally posted by lynnifer View Post
                          Did you see this for Canada?
                          I believe they want to do a trial of NRT :-)

                          Comment


                            #14
                            Originally posted by StemCells&AtomBombs View Post
                            I don't have any info saying the Edgerton version is any better other than there's no need for surgery. Results wise, I've not seen anything. But I could be wrong.
                            More importantly though is we're already starting to have a conversation about the different types of machines and commercialization BEFORE we have facts about the efficacy. The argument is starting to move away from "is epidural stimulation going to improve function" to "what kind of machine is better". The cart is still way in front of the horse on this. Cdrf has already partnered with the expectation of commercialization before the verdict is in. When companies make an investment they do so with the thought of a return, so I hope we first have the basic information on epidural stimulation before we start making competing machines that then will need to go into people to make their money back. If we get to that point, might as well just go to Thailand or wherever.
                            Obviously they have done testing to make sure its better than off the shelf pain stimulators that are currently being used.
                            As a company that plans to bring it to market they wouldn't bother if it wouldn't be commercially viable.

                            If you invest then you can see the results, but at that point you will have signed an NDA and then can't talk about them here.
                            I think thats going to be your biggest problem in getting the info so you can put it on your blog.

                            Comment


                              #15
                              Originally posted by lynnifer View Post
                              Did you see this for Canada?
                              I wonder what this means by using that particular photo? Are they wanting to do fundraising to help G-Therapeutics run a future phase of the STIMO trial?
                              http://spinalcordresearchandadvocacy.wordpress.com/

                              Comment

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