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    All I know is I got methylprednisolone 2 hours after my injury. I had no movement neck to toes. C-2, C-5, C7, all those injurys got better. Now I'm stuck at T-4. Did it help , I would guess to say yes.
    oh well

    Comment


      "I do not think that there will be a be-all-and-end-all therapy any time soon. Therapies will give us incremental results and the networks will design trials to find therapies that continue to improve patients who have participated in our trials. I also hope that the networks will be able to test specific therapies for many of the problems of spinal cord injury, including neuropathic pain. Both ChinaSCINet and SCINetUSA focusing their main efforts on chronic spinal cord injury.

      Wise."


      Dr. Young,

      Does this mean that the only people eligible for the future SCINETUSA trials are patients that have participated in earlier trials??

      Comment


        Originally posted by medstudent View Post
        "I do not think that there will be a be-all-and-end-all therapy any time soon. Therapies will give us incremental results and the networks will design trials to find therapies that continue to improve patients who have participated in our trials. I also hope that the networks will be able to test specific therapies for many of the problems of spinal cord injury, including neuropathic pain. Both ChinaSCINet and SCINetUSA focusing their main efforts on chronic spinal cord injury.

        Wise."


        Dr. Young,

        Does this mean that the only people eligible for the future SCINETUSA trials are patients that have participated in earlier trials??
        Yes, one of our goals is to design clinical trials for participants in our previous trials. Wise.

        Comment


          Thank you for your reply Dr. Young. Does this mean that it would be a wasted effort for those of us who have not yet participated in a SCINETUSA trial to wait for the announcement of trial recruitments? I'm sure a lot of people are holding onto the hope of participating in one of these upcoming trials.

          Comment


            Originally posted by medstudent View Post
            Thank you for your reply Dr. Young. Does this mean that it would be a wasted effort for those of us who have not yet participated in a SCINETUSA trial to wait for the announcement of trial recruitments? I'm sure a lot of people are holding onto the hope of participating in one of these upcoming trials.
            medstudent, I don't understand your question. There have not been any SCINetUSA trial yet. We have not started recruiting. We are still working on the protocols and the trials have yet to be approved by the FDA.

            Wise.

            Comment


              Originally posted by kenf View Post
              All I know is I got methylprednisolone 2 hours after my injury. I had no movement neck to toes. C-2, C-5, C7, all those injurys got better. Now I'm stuck at T-4. Did it help , I would guess to say yes.
              kenf,

              It is great that you have recovered so much. The only way to tell for sure is to do double-blind randomized controlled trials. But, I have heard of many stories such as yours since methylprednisolone started to be used. Of course, people who are incomplete tend to go on to recover a lot. Normally, people who are so-called "complete" recover only 1-2 segments below the injury level. However, I have known many people who have recovered 4 or more segments. If you improved from C2 to T4, that is a big leap. Were you ASIA A?

              I have taken care of and known many people who have methylprednisolone after spinal cord injury. I was on the faculty of the neurosurgery department at New York University and Bellevue Hospital for 209 years. During those years, I have seen many people recover substantially. This was not only at Bellevue but other places. People like Christopher Reeve, for example, got back substantial sensory function over 75% of his body by 2 years after injury.

              I must also say that I have seldom seen anybody die of pneumonia after spinal cord injury at Bellevue. In 20 years at Bellevue Hospital, attending Grand Rounds every Friday, I can only remember very few patients who had died of pneumonia after spinal cord injury. From 1977 to 1997, Bellevue Hospital probably took care of over 2000 acute spinal cord injuries. So, I don't believe that methylprednisolone kills people with spinal cord injury.

              On the other hand, I do believe that methylprednisolone should be used cautiously in older people with high cervical spinal cord injury and that prophylactic antibiotics should be used to prevent pneumonia. In Japan, the number of older people with cervical spinal cord injury is higher than in the U.S. and this may account for why the Ito study cited earlier had a nearly 50% incidence of pneumonia even in the control group. This is an extraordinarily high incidence of pneumonia.

              Wise.

              Comment


                Dr. Young , I was Asia A. I haven't been rechecked to where I am now. I have movement to my butt. My problem now is the spasms over power my movement. It's like I can't get complete control of my back and ab muscules. My PT says if the spasms would go away I could make alot of progress. I just move and my body just locks up. It sucks.
                oh well

                Comment


                  Originally posted by Wise Young View Post
                  Yes, one of our goals is to design clinical trials for participants in our previous trials. Wise.

                  Dr. Young

                  Can you clarify this statement....

                  Does this mean the therapy you are working on will "only" be available to clinical trial participants and not to the rest of us?

                  Comment


                    Originally posted by Zorka View Post
                    Dr. Young

                    Can you clarify this statement....

                    Does this mean the therapy you are working on will "only" be available to clinical trial participants and not to the rest of us?
                    Zorka,

                    No. I have received this question a number of times now. We will be designing trials for many people, new and old participants. I am only saying that we will going to be designing trials for people who have participated in our trials. This does not mean all trials will be for previous participants. Incidentally, since these are the first trials for SCINetUSA, there are no "old" participants yet.

                    Wise.

                    Comment


                      Originally posted by kenf View Post
                      Dr. Young , I was Asia A. I haven't been rechecked to where I am now. I have movement to my butt. My problem now is the spasms over power my movement. It's like I can't get complete control of my back and ab muscules. My PT says if the spasms would go away I could make alot of progress. I just move and my body just locks up. It sucks.
                      Ken, I understand. There is a need for trials that are designed for people like you. That is what clinicla trial networks are all about. They should be a group of clinicians that are constantly developing and executing clinical trials to improve therapies. Wise.

                      Comment


                        Dr. Young
                        now that you're about to start phase 3 of your clinical trials next year on chronics, I was wondering about your feelings regarding these trials! I don't know if it is right or wrong to ask you this, but are you optimistic that these trials will bring about successful results... I am constantly thinking about your trial because unlike other trials, you are already moving along in phase 3, and if all goes well, the procedure could be out to the public by 2012. And the notion of this makes me very excited. We are all very excited about what you're doing and would like to thank you for all your efforts and time that you give us.

                        Comment


                          Originally posted by Barmada View Post
                          Dr. Young
                          now that you're about to start phase 3 of your clinical trials next year on chronics, I was wondering about your feelings regarding these trials! I don't know if it is right or wrong to ask you this, but are you optimistic that these trials will bring about successful results... I am constantly thinking about your trial because unlike other trials, you are already moving along in phase 3, and if all goes well, the procedure could be out to the public by 2012. And the notion of this makes me very excited. We are all very excited about what you're doing and would like to thank you for all your efforts and time that you give us.
                          Barmada,

                          The phase 3 trial (US103) will not be at least until Q3 of 2010, a year away. We still have many hurdles in front of us, not the least of which are FDA approval of and successful completion of phase II trials that show that the umbilical cord blood cell transplants are safe and show some promise, not to mention fundraising.

                          There are times when I think that we have taken on a quixotic quest and quail at the thought of the daunting tasks still in front of us. But, every time that I have an Open House with people, I get re-energized. I am also so grateful for the support of all the people. Without it, we could not have come this far.

                          I don't know whether the treatment will work. I believe that there is a good chance that it will and that the treatment is as safe as we can make it. I also know that this will not be the last clinical trial that we will do. This is only the first combination treatment that the network will test. There will be others and better ones.

                          Wise.

                          Comment


                            Dr. Wise,

                            In the trial that your doing now, if everything goes according to plan, what are your expectations on the level(s) of recovery?
                            Do you have any thoughts on the pace of the recovery?

                            I know that you tend not to entertain any guesses but, you must have a working hypothesis or are the results still too unpredictable.

                            Thanks

                            Comment


                              Dr wise

                              can you tell us about the FDA i know there are there for health and safety
                              but are they medical people or what credentials do they carry
                              AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


                              http://justadollarplease.org

                              Comment


                                Originally posted by skeaman View Post
                                can you tell us about the FDA i know there are there for health and safety
                                but are they medical people or what credentials do they carry
                                Many people work at the FDA. The few that I have met are scientists or doctors who have chosen a career to help the government regulate the pharmaceutical industry. Many of them are quite knowledgeable and would like to help people. The mission of the FDA is of course to ensure the safety of drugs and devices. Cells are still quite new to them. Wise.

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