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Paralysed patients regain voluntary movement with spinal stimulation

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    #61
    This is certainly positive news for everyone on here. Whether you are a believer that this stimulator will someday help you or not you can't overlook the media coverage this created. Good publicity = money for further research!

    I have 2 questions:

    1. From the sci vets on here have you ever seen the widespread media coverage that this therapy received in the US at any other point in the point in the past?

    2. Being involved in the NRN with a c5/c6 injury I notice that my quad belly makes standing exercises somewhat uncomfortable and difficult. If we were able to gain those ab muscles back with a therapy such as this would we be able to reverse the belly or once those lower body organs have "dropped" they will be very difficult to get back into their natural place?

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      #62
      Originally posted by paolocipolla View Post
      Is the "recovery" of B&B scientifically documented or just an anecdotal report?

      Do they still need catheters?

      Paolo
      From what I have gathered previous to this hitting the big news lines, I believe it was Rob (1st patient) had mentioned he does still use a cath when he is out of his home. But is able to void voluntarily without one. So for whatever reason he finds it easier to still use a cath. I also have read that he can now wiggle his toes with out the sim being turned on. Both of these things are anecdotal as far as I know. Would be awesome if he would post here and answer some questions like this.

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        #63
        The media coverage of this is quite amazing, I've never had so many ABs send me links to spinal stuff from the news before. Whoever is doing their PR is doing a bang up job I have to say.

        I'm a little light headed from the pain meds... but wondering..

        So this is based off of the Medtronics chronic pain neurostimulator ? http://www.medtronic.com/patients/ch...rs/what-is-it/

        This uses 16 stimulators, but the device they are using has 27 ? So I should double up and get 2 devices fitted for 32 stimulators .

        From memory, the pain device is fitted below the injury, is this correct?

        Does anyone know where does this new device get fitted in relation to the injury? above the injury? on the injury? below the injury or all three ?

        Then begs the question, I wonder if anyone who has the regular pain neurostimulator has had any luck etc. ? ?






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          #64
          Originally posted by NW-Will View Post
          So this is based off of the Medtronics chronic pain neurostimulator ? http://www.medtronic.com/patients/ch...rs/what-is-it/

          This uses 16 stimulators, but the device they are using has 27 ? From memory, the pain device is fitted below the injury, is this correct?

          Does anyone know where does this new device get fitted in relation to the injury? above the injury? on the injury? below the injury or all three ?
          A 16-electrode epidural spinal cord stimulator, commonly used in medicine today to treat pain, was implanted over the spinal cord at T11-L1. This location corresponds to dense neural networks that control movement of the hips, knees, ankles and feet. The one used on these four men was the Medtronic brand for pain.

          The 27 electrode is the sophisticated one that will be going into clinical trials by NeuroRecovery. They'll have a transcutaneous model for mild to moderate injuries and then one subcutaneous for severe injuries. Since the research group knows the Medtronic device they are now implanting is very suboptimal, there are efforts underway to create and market new stimulation devices, primarily by a team from UCLA (headed by Reggie Edgerton), Cal Tech and the University of Louisville. The California company, NeuroRecovery Technologies, has obtained the rights to the intellectual property from the three universities.
          Last edited by GRAMMY; 10 Apr 2014, 9:24 PM.
          http://spinalcordresearchandadvocacy.wordpress.com/

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            #65
            Severe motor complete was tested. C7-T5

            They have the funds now to enroll eight more patients. Four of them will be the same as the first four as closely as possible (age, time since injury, etc.). The other four will be tested for response to epidural stimulation on cardio function. This comes from one of the first four patients, Andrew Maes, that had blood pressure issues related to autonomic dysreflexia (AD). When the stim was on his blood pressure normalized. If this cardio application can be more widely demonstrated, that’s going to be a much clearer path to the clinic than voluntary movement alone perhaps.

            Bowel, bladder and sexual function wasn't being tested. Nobody expected those to return but was reported to Susan as the therapy progressed by all 4 of them.
            Last edited by GRAMMY; 11 Apr 2014, 10:50 AM.
            http://spinalcordresearchandadvocacy.wordpress.com/

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              #66
              Originally posted by paolocipolla View Post
              Is the "recovery" of B&B scientifically documented or just an anecdotal report?

              Do they still need catheters?

              Paolo
              Paolo,

              While great news, nonetheless - probabilistically speaking - this is completely the exception and not the rule.
              No one ever became unsuccessful by helping others out

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                #67
                So, if I get it right, Rob Summers reported some improvments in bowlel, bladder and sex function in the past, but this claim was not supported by an indipendent medical examination.
                If the recovery is true it seems even more important than some motor recovery, so what I don't get is why in the following patients they didn't monitor scientifically changes in bowel, bladder & sex.

                I suppose the changes must have been so small (if any) that could not be documented scientifically.

                In my personal opinion the videos with patients reporting recovery non scientifically documented look like the ones from clinics selling unproven therapies around the world.

                Paolo
                Last edited by paolocipolla; 11 Apr 2014, 6:29 AM.
                In God we trust; all others bring data. - Edwards Deming

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                  #68
                  Originally posted by paolocipolla View Post
                  So, if I get it right, Rob Summers reported some improvments in bowlel, bladder and sex function in the past, but this claim was not supported by an indipendent medical examination.
                  If the recovery is true it seems even more important than some motor recovery, so what I don't get is why in the following patients they didn't monitor scientifically changes in bowel, bladder & sex.

                  I suppose the changes must have been so small (if any) that could not be documented scientifically.

                  In my personal opinion the videos with patients reporting recovery non scientifically documented look like the ones from clinics selling unproven therapies around the world.

                  Paolo
                  I am going to see Dr. Harkema and Reggie Edgerton speak next month. I'll do my best to get an answer out of Susie then about bb&s.

                  As far as the videos looking like ones from clinics selling unproven therapies...remember there is actual, published research backing up many things they have found, which in my opinion all but proves that epidural stim can return voluntary movement in a limited, non-functional capacity, as well as let the spinal cord respond to external sensory stimulus, as demonstrated by before and after locomotor training EMGs of the subjects. The bb&s has not been medically validated or proven, but movement and neural activation have been.

                  Comment


                    #69
                    Originally posted by paolocipolla View Post
                    So, if I get it right, Rob Summers reported some improvments in bowlel, bladder and sex function in the past, but this claim was not supported by an indipendent medical examination.
                    If the recovery is true it seems even more important than some motor recovery, so what I don't get is why in the following patients they didn't monitor scientifically changes in bowel, bladder & sex.

                    I suppose the changes must have been so small (if any) that could not be documented scientifically.

                    In my personal opinion the videos with patients reporting recovery non scientifically documented look like the ones from clinics selling unproven therapies around the world.

                    Paolo
                    Do you expect a video about the sexual function ??

                    Comment


                      #70
                      Originally posted by tomsonite View Post
                      I am going to see Dr. Harkema and Reggie Edgerton speak next month. I'll do my best to get an answer out of Susie then about bb&s.

                      As far as the videos looking like ones from clinics selling unproven therapies...remember there is actual, published research backing up many things they have found, which in my opinion all but proves that epidural stim can return voluntary movement in a limited, non-functional capacity, as well as let the spinal cord respond to external sensory stimulus, as demonstrated by before and after locomotor training EMGs of the subjects. The bb&s has not been medically validated or proven, but movement and neural activation have been.
                      With the additional 8 subjects they have funding to test now, would you please ask Susan and Reggie specifically if bb&s will be included in their primary or at least secondary outcome measures since all 4 of the current subjects report recovery on this or do they plan to wait until the 27 electrode array is ready to set up protocols then? Thanks so very much in advance.
                      Last edited by GRAMMY; 11 Apr 2014, 11:08 AM.
                      http://spinalcordresearchandadvocacy.wordpress.com/

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                        #71
                        Originally posted by beuty View Post
                        Do you expect a video about the sexual function ??

                        Comment


                          #72
                          Originally posted by beuty View Post
                          Do you expect a video about the sexual function ??

                          Yes...
                          "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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                            #73
                            I gotta admit its good news. But you give me bladder, bowel and sensation and you would never hear a peep out of me. See what the next phase brings.

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                              #74
                              Originally posted by GRAMMY View Post
                              With the additional 8 subjects they have funding to test now, would you please ask Susan and Reggie specifically if bb&s will be included in their primary or at least secondary outcome measures since all 4 of the current subjects report recovery on this or do they plan to wait until the 27 electrode array is ready to set up protocols then? Thanks so very much in advance.
                              Absolutely, that is my #1 question. A coworker of mine who is going with me said he already plans on "bringing rotten eggs and tomatoes to throw in case she doesn't give us a satisfactory answer."

                              Comment


                                #75
                                Originally posted by tomsonite View Post
                                Absolutely, that is my #1 question. A coworker of mine who is going with me said he already plans on "bringing rotten eggs and tomatoes to throw in case she doesn't give us a satisfactory answer."
                                A coworker? Oh sheesh...come on! I've seen YOU in action during Q & A's before, remember? You hold your own there buddy! You get er done!!!
                                http://spinalcordresearchandadvocacy.wordpress.com/

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