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Could a "cure" be a one-time only procedure?

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    Could a "cure" be a one-time only procedure?

    A few years ago I spoke with a Doctor about cure and human trials. He was going on about how "We may only have 1 shot at it" and therefore human trials are far too premature.

    I don't really see how any of the therapies being worked on today (ie: OEG transplants) would somehow "screw you" for future therapies. Perhaps a peripheral nerve transplant or some other irreversible procedure could do this... but what about some kind of injection of cells or nerve growth factors? How would this prevent you from better future therapies?

    Any thoughts?
    "Oh yeah life goes on
    Long after the thrill of livin is gone"

    John Cougar Mellencamp

    Dr. Young or anyone?
    "Oh yeah life goes on
    Long after the thrill of livin is gone"

    John Cougar Mellencamp


      If an axon can grow once .Why couldn´t do it twice? [img]/forum/images/smilies/wink.gif[/img]


        I disagree with the doc on the "1 shot deal".

        A BIG part of the problem concerning limited human trials, therapies, etc. is the differentiation between our injuries. If we were all exactly alike with the same sequence of cascading events (spasticity, sensation, motor impairment, etc.) that sci brings then I believe we'd have or be very, very close to a "cure" or recovery - seeing that its an injury and not a disease.

        The complications abound concerning every aspect of our eventual recovery. Our physiological differences have to be accounted for as thoroughly as possible.

        I prefer to view progress in this way. I know that we can regrow axons which are essential. I believe that we can remyelinate them once properly targeted - pharmaceutically or naturally. We can also untether and decompress our cords (through surgery) to provide a more natural (normal) spinal canal environment. I also believe that we can retrain our bodies through intensive physical activity once nerve innervation is accomplished.

        What I'm not sure about. Targeted axon growth? (which is a biggie) Immunosuppression? Tumor formation? Increased neuropathic pain (another biggie) OEG? ESC? ASC? - as the foundation? Scar tissue? Overall health of the general sci population? (which is important in clinical trials. One death and we're knocked back big time)

        In comparison to diseases (Alzheimers, cancer, etc.) there is, from my understanding, a pretty consistent chain of events that every sufferer typically endures. Its more of a question of when its discovered in terms of treatment aggression. The experts generally agree.

        SCI is completely different. Hell, one shining example is the lack of use/understanding and consistent belief of administering MP in the initial treatment stages. The list grows long from there in terms of the inconsistencies. One has to only read a few threads to realize the differences.

        In answer to your final question Mike I don't think the sci medical community in general knows what might or might not work in China, Australia, Portugal. And therefore I don't think that you could be left off the 'list' unless you had serious complications, health issues that would encumber the results.

        The problem lies in the fact that given the few clinical trials available the doctors would most likely favor those candidates who are still in virgin like state concerning medical intervention. Makes sense given that the trials goals are to maximize the results - right? Additionally, the time involved to witness recovery. You could go to China tomorrow, have the procedure and who knows whether its two months or two years until results may or may not appear? And within that time frame did something better in terms of a 'cure' come along?

        We are a complicated group in terms of injuries / recoveries or lack thereof. The things that we have in common like bowel, bladder, sexual function are consistent. One of the reasons I believe that we'll recover these first. Simply because many docs can try and solve a consistent problem that we all(in general) suffer from.

        Walking, although tops on a lot of our lists, may imo be an after effect from the return of bbs.

        For the past 1 1/2 yrs I've often thought and said that if I could get 5 sci docs to agree on a procedure then I'm first in line. Until then there are too many theories, too many stories and too few published consistent results to get me on that line.


        Onward and upward.


          If one of the curative therapies would merely involve, say, injection of stem cells, or some regeneration-inducing medication(s), I can't see why that would only be a one shot deal. A surgical procedure might be, depending on what's involved.

          Proofread carefully to see if you any words out.


            I was recently emailing mk99 about the "cost" of participating in a clinical trial. It is not just the money, the time, and the risk but the emotional energy that the person and loved ones put into the trial. Even if a potential treatment does not cost very much, doesn't take very much time, and does not pose very much risk, that emotional price may not be worthwhile if the treatment does not have much likelihood of success.

            I agree with mk99 that having had one therapy should not necessarily disqualify a person from better future therapies. On the other hand, I also agree with ChrisD that there is a tendency for most clinical trial to prefer people who have not recently had another experimental therapy because it would be difficult to determine whether it is the current and not the previous therapy that is responsible for any improvement (or deleterious effects). Since recovery takes time and most clinical trials require at least one year followup periods, it is difficult for people to participate in back-to-back trials that are separated by less than a year.

            I think that one should also consider what a clinical trial is all about. In my opinion, a clinical trial is not an opportunity to get a free therapy but rather a service that the person is performing for the community, donating the time and taking the risk of an experimental therapy, to help establish the safety and efficacy of an experimental therapy.

            I get worried when I hear somebody say that "I have nothing to lose". This is usually not true. Everybody has something to lose. For example, surgery imposes not only a risk of further damage to the spinal cord but also the likelihood of scar formation that may make re-exposure of the injury site more difficult. Every anesthesia and surgical procedure has some risk of morbidity and even mortality.

            It is important that people enter clinical trials clearly understanding the potential risks and benefits. When somebody says that they have nothing to lose, this suggests that the person does not understand the risk. When somebody says that they have a so-and-so chance of getting cured based on one or two anecdotal cases, this suggests that they are overestimating the potential benefits.