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Thread: Spinal Cord Injury Network USA (SCINetUSA)

  1. #231
    Quote 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.

  2. #232
    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.

  3. #233
    Quote 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?

  4. #234
    Quote 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.

  5. #235
    Quote 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.

  6. #236
    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.

  7. #237
    Quote 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.

  8. #238
    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

  9. #239

    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

  10. #240
    Quote 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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