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    Jim you should not tell me what to do....so tell me Jim , why do you and others have the privilege to see MRI's and videos and we dont??

    Comment


      You are right that KK11 can not say for 100% sure that regeneration has not occurred. But he, and I, can with 99.9% certainty, that it has not. There are many possible, and more likely, reasons as to why 75% of the patients can activate cpg. Remember, Dr. Young even says that in complete injured SCI there are still remaining intact axons. Given how unprecedented and impossible that kind of regeneration has been; until it is PROVEN that regeneration is the mechanism it should be presumed that it is not the cause.

      I'm not just picking on Chinasci. This goes for any potential treatment.

      Comment


        Based on how ground breaking, first time in history, that kind of regeneration would be, and yet at the same time, extremely…extremely unlikely, it is best to not even discuss that as the likely/possible mechanism of cpg recovery. It’s not fair to the people who don’t really understand SCI research all that much and put their hope on the line. If there comes a time when it can be undeniably proven that regeneration is the cause, then that should be made public.

        To be clear, I’m not criticizing Chinasci for how long the results are taking to be released. I understand that can take a long time. In fact, I think it's a good thing.

        Science can not exist without doubt. That is the whole point of the scientific method! To prove beyond doubt. This is not a church... being criticized for expressing doubt.

        -- Doubting Thomas I

        Comment


          KK11, hop on a plane to Newark, NJ and grab a bus to Rutgers for the next First Friday Open House and you can see the same videos, pictures, slides and how they were obtained as I did less than 2 weeks ago. If you don't understand something Wise can explain it or others can. But even at the open houses they don't tell you exactly how they got from point A to point B. Just check out a chalkboard in that lab. I don't understand most of what they do. But they do show the cells being delivered by the most high tech needle I have ever seen. And as someone who had serious doubts that umbilical cord cells would do anything including further damage I was very surprised. No damage but actual weight bearing and working hip flexors. The knees being watched for buckling is most likely, in my opinion, due to how big the quadriceps muscles are and how long it will take to get them innervated enough and the muscles strong enough so all that recover can use canes rather than walkers.

          No longer a doubting Thomasina
          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

          Comment


            Thanks for the clarification - what you say makes more sense, and I see where you're coming from in presuming that regeneration is not the cause of 75% of patients doing minimally assisted walking. You're right that even for most complete injuries, there are still intact axons that pass through or around the injury site. This is why the intensive walking therapy alone might be enough to get people to the point of KLS IV, without the surgery.

            However, intensive walking therapy alone, whether at Kunming, Tongren, or any other activity-based walking therapy place in the world, for that matter, has never gotten 75% of people to walking at a KLS IV level. This phase II study is the first time this kind of success has been seen. Given that the only difference in this study was a laminectomy and UMBC surgery, is it that unreasonable to construe that the cells did something?

            Comment


              The Kunmimg walking programme may cause some bad problems like that: "Because the injury was not initially diagnosed or treated correctly, my leg has healed in a permanently deformed position, a condition known in the orthopedic world as Genu Recurvatum … http://en.wikipedia.org/wiki/Genu_recurvatum.
              It is not yet clear how or even if this leg could be surgically repaired, because the ligaments have been so hyper-extended that they may not be able to return to their original size and shape. Here’s what my broken leg looks like today:"
              http://chinaquaddiaries.org/

              If they can't even fix a fracture properly I wouldn't go there.. and maybe the walking program they use is not the best approach for people with chronic SCI.

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

              Comment


                Paolo ,
                this is some very interesting stuff! Thanks for sharing!

                KK11

                Comment


                  I could not find where she was or even agreement over when she broke her leg. The one orthopedic surgeon says it is new but with no tendon/ligament problems and she thinks the fixed malformation is from Genu Recurvatum. Maybe she knows she has Ehlors-Danlos Syndrome but finds it not worth commenting on or she really is not fully aware of when the break took place. Looking at both the pictures and the xrays I'd say she broke her leg but the ligament issues are separate. No I am not a doctor.
                  The walking I saw would not cause hyper extension but a fast collapse with the knees bending normally on the way down. Yes,such falls could break bones but not in a reverse extension movement. I've been up there in such rolling walkers and none of these subjects appeared to be flaccid where hyperextension is more common.
                  Nice blog. Thanks for the link.
                  Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                  Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                  Comment


                    Paolo, you are jumping to conclusions when you don't know the facts. Just because someone posted something in a blog doesn't mean it is factually accurate.

                    Comment


                      Paolo, the bloog is confusing. The broken leg is Ali's not the woman from England. Look at the top and read About Me. She was in Miami when she broke her leg. It seems she may have also continued past her elbows ability to keep her upright and that was why she broke her leg. She's reporting this in August with the break assumed to have happened in June. You don't need to be a doctor to know that a deformed knee like that did not happen from a "non-displaced fracture" of either bone. I think there are a few facts being left out. But it does tell us she was still working out in Miami when the "wonky knee" developed.
                      Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                      Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                      Comment


                        Originally posted by Jim
                        Paolo, you are jumping to conclusions when you don't know the facts. Just because someone posted something in a blog doesn't mean it is factually accurate.
                        Jim, I am sorry if it seems I jumped to conclusions, The picture of the leg was striking for me and what I posted was just how I personally felt and I did not intend to jump to any conclusion.

                        You may remember Wise has posted before about Ali, he knows her and her father, so perhaps he could find out what has happened more precisely.

                        If you have time to read the whole blog you will see that Ali seems to have been very accurate in reporting all she did including the surgery. That doesn't mean that all she has posted is correct. People can read the blog and come to their own conclusions.

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

                        Comment


                          Paolo, a fracture is not a cause of genu recurvatum. That condition results from people not using their legs for long times and the ligaments have become stretched and loose. Many doctors, including the doctors in Kunming, are concerned with walking with hyperextended knees. The solution, as Ali describes, is a brace for the knee to prevent the hyperextension without limiting other movements of the knee. I hope that the brace solves the problem for Ali.

                          I had spoken to Ali and her doctors. It is not clear when her leg fracture occurred. It was of course discovered in Kunming when they took an x-ray of her leg. The family showed the x-ray to a doctor in Miami, who opined that the fracture is less than 3 months old and that he would have fixed (presumably by putting pins in and stabilizing the fracture). The doctors in Tongren Hospital believe that it is an old fracture but I understand that they had recommended to Ali that she should not walk on it.

                          Wise.

                          Comment


                            If it is TRUE that 75 % of chronic ASIA A patients are walkin as a FACT then why in the HELL is there not a facebook page of all of this ? As big as facebook is that is all it would take to receive all the $ in the world for the trials. Christ something STUPID can get 100,000 likes in a matter of a couple hours. Imagine the familys that have to put up with the bullshit of living with SCI. How many is there in a year all over the world ? It just dont make any since to me ? If this is all true than why in the f*** isnt it on the news, spacebook, a website , somewhere ? I know for a fact I raised 18,000$ in my community for my benefit , just to help out a little with the bills etc , etc , . Show my community that I COULD WALK AGAIN & I bet I would raise 100,000$
                            I am not a hatter of dr wise or any of the scientist working towards a cure I really actually appreciate the hell out of them !!! & I mean that , I just dont understand. I am not one to sit here & pity my life neither so dont think that is why I get so PISSED its just that it all seems to good to be true without any public announcement .

                            Comment


                              Dr Young,
                              what about walking recovery and age?
                              Thanks. Best wishes.

                              Comment


                                There is no significant difference in walking recovery relating to age. Both young and old subjects seem to improve with the treatment and training. Wise.

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