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

  1. #1

    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; 12-24-2017 at 02:39 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. #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.

  3. #3
    Senior Member lunasicc42's Avatar
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    Watching this for any response you might get... Thank you for doing this, dennis
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    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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

  5. #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.
    Quote 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.

  6. #6
    Senior Member lynnifer's Avatar
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    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.

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  7. #7
    Quote 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.

    Quote 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.


    Quote 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?

  8. #8
    Senior Member lunasicc42's Avatar
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    Quote 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!!!! "


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  9. #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.

    Quote Originally Posted by lunasicc42 View Post
    Yes dennis, did you consider to attempt to reach out to Edgerton as well

  10. #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.
    Quote 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?

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