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    Incompletes?????

    Dr. Young,

    Is there any hope / chance that we incompletes might be able to take part in any of your upcoming trials? i'm a c4-c5 walking quad. Jan 2013 will be my 23rd anniversary since my injury. i walk with a cane but am starting to struggle more and more with overall strength, balance and stamina. The only positive in my life in recent years has been complete return of bowel, i no longer use suppositories and go normally like before injury. bladder is still a big problem and can only hold for bout 1 minute.

    in the past 5 years the pain levels have sky rocketed. everything hurts terribly and its never ending. the pain has seriously affected my overall health and state of mind, theres just never any rest or break from the pain!

    i don't take ANY type of medicines because to this day i haven't found anything that helps.

    thank you for all you do Dr Young.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

    Comment


      Originally posted by Wise Young View Post

      I think that we would want to wait at least 2 years before even considering giving a second course of umbilical cord blood and lithium therapy. In any case, we are still discussing all these options. It is possible that we will do a series of smaller phase II trials before embarking on another phase III. I don't think that we have enough data yet for a phase III in 2014. It would be really great if there were other chronic spinal cord injury trials going on.

      Wise.
      Could multiple trials be run simultaneously if the funding was available?

      Comment


        Dr. Young,
        You mentioned Cethrin should asia improvements. Has their been any positive results in bowel and blatter functions?

        Comment


          I meant Had shown Positive Asia improvements.

          Comment


            [QUOTE=Wise Young;1623188]
            Originally posted by paolocipolla View Post

            Paolo,

            I disagree. It is neither necessary nor useful to throw a tantrum and question somebody's intentions or motivations simply because you do not understand something. Such behavior is detrimental to communication. You had questioned me when I said that people are showing improved locomotor scores even though they are not showing changes in motor or sensory scores. That is a legitimate concern and I tried my best to explain it to you. Apparently my explanation was confusing to you. So, let me try again.

            Would you not agree with the following statement? If a person has no direct connections to the motoneurons controlling muscles of the legs but has some connections to the central pattern generator that connects to the motoneurons, that person can initiate walking and stop walking but cannot activate movement of individual leg muscles. If you don't agree with the statement, don't read any further and we should discuss why you don't agree with it. If you do agree with the statement, then please continue reading.
            ......

            Wise.
            Wise,

            back in June you said that "some people are walking", then a few weeks ago you said people are walking without having recovered any voluntary movements, so if I get it right, these people have been walking for a few months just by activating the CPG.

            I would like you to show me a person that can only activate the CPG walking, because I don't think that many people would agree to call that "walking", but I give you the benefit of the doubt untill I can see people like that.

            Paolo
            In God we trust; all others bring data. - Edwards Deming

            Comment


              YAWN

              [QUOTE=paolocipolla;1623523]
              Originally posted by Wise Young View Post


              Wise,

              back in June you said that "some people are walking", then a few weeks ago you said people are walking without having recovered any voluntary movements, so if I get it right, these people have been walking for a few months just by activating the CPG.

              I would like you to show me a person that can only activate the CPG walking, because I don't think that many people would agree to call that "walking", but I give you the benefit of the doubt untill I can see people like that.

              Paolo

              Comment


                Damn man your a persistent fucker aint you! Let the man work shit, he knows a hell of alot more than me and you about what he's doing stop pestering the hell out of him. Who gives a damn what he's working on if he thinks he can help us with what he is doing let him work its more than me and you are doing. The Bitch of it is that IF just IF his work does help restore function to us you and Kivi will be the first ones kissing his ass nd unpluging the high quad sip and puff chairs so you can get to the front of the line. In the meantime get a good chew of tobacco some good whiskey and a hott girl or magazine and relieve some pressure. Dr Wise and everyone elese trying to help us from the bottom of my heart Thank You.

                Comment


                  Jesus Paolo, would you quit your rude pointless arguments and let it go??? For the past weeks your posts just annoys me and your quotes just confuses everybody here, wasting peoples time with pointless remarks just because you don’t understand –or- pretending not to understand blaming someone else just to look smarter… stop your whining and LET IT GO, pal! To me you contribute nothing useful here in this forum.

                  By you to understand something or not, nobody's going to get cured by you so don't expect a diploma by the mail. Let the pros do their work.

                  Meanwhile, go get 'pissed off' and cry somewhere else, your attitude is unbearable.


                  CIAO

                  Last edited by Moe; 7 Dec 2012, 9:30 PM. Reason: spelling
                  "Talk without the support of action means nothing..."
                  ― DaShanne Stokes

                  ***Unite(D) to Fight Paralyses***

                  Comment


                    ineedmyelin,

                    I am sorry but none of the cell transplant trials that we are currently planning for 2013 will be addressing people who are motor incomplete (ASIA C, D, or E). The reason is because the treatment involves surgery to expose the spinal cord and injection of cells into the spinal cord. The procedure may pose a risk to existing axons crossing the injury site. We are considering including people who are ASIA B and may design a trial to assess people who are ASIA B or C after if our phase III trial shows substantial benefit of the umbilical cord blood mononuclear cell transplants.

                    However, we are starting a trial to assess oral lithium and its effects on severe neuropathic pain in patients with both complete and incomplete spinal cord injury in China. We had earlier discovered that lithium reduces neuropathic pain in patients with chronic spinal cord injury but this was an incidental finding on a trial and we are confirming this finding in a phase 3 double blind randomized clinical trial that will start in March 2013. If this trial shows that the treatment does reduce neuropathic pain, you may want to consider this therapy.

                    Wise.

                    Originally posted by ineedmyelin View Post
                    Dr. Young,

                    Is there any hope / chance that we incompletes might be able to take part in any of your upcoming trials? i'm a c4-c5 walking quad. Jan 2013 will be my 23rd anniversary since my injury. i walk with a cane but am starting to struggle more and more with overall strength, balance and stamina. The only positive in my life in recent years has been complete return of bowel, i no longer use suppositories and go normally like before injury. bladder is still a big problem and can only hold for bout 1 minute.

                    in the past 5 years the pain levels have sky rocketed. everything hurts terribly and its never ending. the pain has seriously affected my overall health and state of mind, theres just never any rest or break from the pain!

                    i don't take ANY type of medicines because to this day i haven't found anything that helps.

                    thank you for all you do Dr Young.

                    Comment


                      [QUOTE=paolocipolla;1623523]
                      Originally posted by Wise Young View Post

                      Wise,

                      back in June you said that "some people are walking", then a few weeks ago you said people are walking without having recovered any voluntary movements, so if I get it right, these people have been walking for a few months just by activating the CPG.

                      I would like you to show me a person that can only activate the CPG walking, because I don't think that many people would agree to call that "walking", but I give you the benefit of the doubt untill I can see people like that.

                      Paolo
                      Paolo,

                      Yes, you seem to have gotten the explanation right. I should clarify that I reported that some patients are showing improvements in locomotion scores without significant increases in their motor scores, which reflect voluntary motor strength of legs. To explain this, I said that "the patients appear to be able to activate their central pattern generators without increasing their voluntary motor control or strength." I don't think that I said that people are walking without any voluntary movement. Certainly, that was not my intent.

                      It is all right if you don't believe my explanation of the phenomenon. If you are interested, there is ample evidence in the literature of people who are walking through activation of the central pattern generator. If you watch the youtube of Reggie Edgerton's lecture posted by Grammy earlier, he actually shows a person doing "air walking" with stimulation of the central pattern generator. However, you will have to wait until we publish the study to see all the data from our study and decide for yourself. I hope, of course, that our subjects will show improved motor and sensory scores on followup examinations. Six months may still be too early. Thanks.

                      http://spinalcordresearchandadvocacy...otor-function/

                      Wise.
                      Last edited by Wise Young; 8 Dec 2012, 6:46 AM.

                      Comment


                        Originally posted by JoeMonte View Post
                        Dr. Young,
                        You mentioned Cethrin should asia improvements. Has their been any positive results in bowel and blatter functions?
                        JoeMonte, I don't think that they reported any changes in bowel or bladder function. Wise.

                        Comment


                          Originally posted by crabbyshark View Post
                          Could multiple trials be run simultaneously if the funding was available?
                          Yes, we are already planning to run multiple parallel trials. For example, in 2013, we will be carrying out a oral lithium to treat severe neuropathic pain at the same time that we will be doing a phase III trial to assess umbilical cord blood mononuclear cells and lithium in China, U.S., Norway, and India. If we get funding and FDA permission, we are hoping to initiate a trial in New Jersey that will combine umbilical cord blood mononuclear and lithium with Cethrin. We have to be careful that we do not exceed the ability of our centers to recruit subjects for the trials but I believe that there are enough subjects, certainly in China and probably in other countries. We don't have funding for all these trials and have been trying to raise the funds. I am hoping that our success with chronic spinal cord injury trials will encourage other groups (such as the Miami Project, Christopher Reeve Foundation, Rick Hansen, and others) to consider chronic spinal cord injury trials.

                          Wise.

                          Comment


                            Originally posted by Wise Young View Post
                            ineedmyelin,

                            I am sorry but none of the cell transplant trials that we are currently planning for 2013 will be addressing people who are motor incomplete (ASIA C, D, or E). The reason is because the treatment involves surgery to expose the spinal cord and injection of cells into the spinal cord. The procedure may pose a risk to existing axons crossing the injury site. We are considering including people who are ASIA B and may design a trial to assess people who are ASIA B or C after if our phase III trial shows substantial benefit of the umbilical cord blood mononuclear cell transplants.

                            However, we are starting a trial to assess oral lithium and its effects on severe neuropathic pain in patients with both complete and incomplete spinal cord injury in China. We had earlier discovered that lithium reduces neuropathic pain in patients with chronic spinal cord injury but this was an incidental finding on a trial and we are confirming this finding in a phase 3 double blind randomized clinical trial that will start in March 2013. If this trial shows that the treatment does reduce neuropathic pain, you may want to consider this therapy.

                            Wise.
                            I assume that is your current ASIA status. I was A for the first 2 years and changed to C with the ability to voluntarily have some movement of the anal sphincter but that is about it. I feel completed tho technically I am not. I would probably assume I was still complete unless I had Asia exams done on occasion after my accident.

                            To read about a trial where people are making gains including the ability to ambulate or walk and to know you would be excluding bc you can sort of squeeze something below your injury level is frustrating.

                            Comment


                              Originally posted by Lyerly View Post
                              I assume that is your current ASIA status. I was A for the first 2 years and changed to C with the ability to voluntarily have some movement of the anal sphincter but that is about it. I feel completed tho technically I am not. I would probably assume I was still complete unless I had Asia exams done on occasion after my accident.

                              To read about a trial where people are making gains including the ability to ambulate or walk and to know you would be excluding bc you can sort of squeeze something below your injury level is frustrating.
                              As I said, we are still discussing the inclusion and exclusion criteria for the trial. I agree with you that it seems unfair to exclude somebody like you because you have what is called "sacral sparing". The ASIA classification system was originally devised to classify the severity of injury during the initial days after spinal spinal cord injury and is not a good classification system for chronic spinal cord injury. I can say this because I was on the original committee that proposed in 1990 to use sacral sparing as the means to differentiate ASIA A from B, C. In my opinion, the presence of sacral sparing does not have the same prognostic implications in chronic spinal cord injury as it does in acute (<24 hours) and subacute (days or weeks after) spinal cord injury.

                              There are two reasons for excluding ASIA B and C patients from the trials. The first is that transplanting cells into the spinal cord may jeopardize surviving axons that are crossing the injury site. The second is that ASIA B and C subjects have better prognoses for recovery than ASIA A subjects. The second reason is not applicable to people with chronic spinal cord injury. I may be able to convince my colleagues to include patients with sacral sparing and no other motor or sensory function in the lower limbs. We shall see.

                              Wise.

                              Comment


                                Idk if this is the wrong place to ask this, but I recent found out the my t10 burst fracture was more than a contusion. Appearently the bone exploded inwards into the spinal cord(maybe severing it idk how bad). And from what I understand these trials are only for contusion. Is there any way to fix both contusion and penetration injuries or is it a lost cause?
                                T6 complete since 3/21/2012

                                Comment

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