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Thread: What do you have to lose?

  1. #121
    Quote Originally Posted by bocasci
    Are you agreeing with Foolish Old that there is currently nothing? If so maybe we need more research like he says before we build these clinical trial networks so we can have something worthwwhile to put to a trial. As it is we don't need a expensive clinical trial network to show that things don't work, we see so many therapies shot to pieces already, even by doctor Young, without the use of a clinical trial network.

    Nope. I wasn't referring to legitimate trials or research, I was referring to the undocumented therapies being offered overseas....in keeping with the original subject of this thread.

    I was echoing Wise's post, see post #22. None of them are offering functional return to chronic completes so I'd have nothing to gain and money and possible function to lose by participating in one.

    Death is not the worst thing that could happen to you with an experimental therapy. If you were to get AIDS, hepatitis, cancer, or an auto-immune condition as a result of the treatment, that would be worse that what you and possibly suffering that may be worse than just dying from the treatment.

    You certainly can lose function. Some people think that they are not going to lose any function if they are "complete". This is not true. Consider the following:
    • You may lose neurons below the injury. If you do, replacing those neurons will be longer and harder to do.
    • You may have an ascent of injury level. If you have a cervical spinal cord injury, the loss of even one level could potentially be devastating.
    • You may get neuropathic pain that you do not have or worse neuropathic pain than you are getting.
    • You may lose bowel and bladder function, erection, and ejaculation.
    • You can lose blood pressure control.
    • You can get constipation.
    • You may get flaccid anal and bladder sphincters and thereby have incontinence.
    • You may get a stroke and brain damage.

    I am not saying the above just to scare people but it is not true that people have nothing to lose. Everybody has a great deal to lose and it is not just your life.

    Wise.
    Last edited by antiquity; 06-12-2007 at 10:04 PM.

  2. #122
    Quote Originally Posted by Foolish Old
    In the absence of clinical trials, how do we test the efficacy of a given therapy? Therapies most be tested to learn their worth. The important thing is to select the most promising therapies and assure that the trials are constructed, conducted and evaluated in a way that that produces reliable and accurate conclusions.
    I agree. But I also think we need to see visual undisputable results. The MP trial shows that for over a decade many believed it worked, until recently it was reviewed and many doubts have surfaced. We tear apart so many non conventional treatments. Yet, the gold standard, the clinical trial itself can also be used to give the green light to a therapy that doesn't work.

  3. #123
    Sorry, I didn't mean it to sound bad. It's a conversation we've had before, about insurance covering therapies and how that will require FDA approval.

  4. #124
    Senior Member alan's Avatar
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    Several years ago, a pain doc suggested that a morphine pump might help me, but he said the catheter would have to be placed above my injury level (high C-5) to have a chance of relieving all my central pain, which starts at the level of injury.) Even assuming he could have gotten the catheter past my injury site, which is doubtful (when I had a spinal cord stimulator 20 years ago, they couldn't get it past C-6), I wouldn't go for the idea, because if a granuloma formed at the catheter above the injury level, there would go my breathing, which is tough enough already due to my abdominal pain. As desperate as I am for pain relief, I couldn't take that risk. Treatments can make matters worse, so that always has to be taken into consideration.

    Many of us have had fusions, because our broken spines didn't heal properly. Among the many possible problems on the consent form was worsening of the paralysis, but, as I didn't want my head to fall off <grin> or wear a halo for life, the fusion was done. 26 years later, C-4 to C-6 are fine, even with the wires gone since 1987, but the disks above and below are deteriorating.
    Alan

    Proofread carefully to see if you any words out.

  5. #125
    Quote Originally Posted by Foolish Old
    The conclusion (quoted above) of the paper you linked provides a convincing argument for the establishment of a clinical trial network to provide standards, consistency, rigorous oversight and peer review for clinical trials.
    What exactly are you saying? Are you saying if at the time the methylprednisolone trials for acute sci were done if a clinical trial network existed, it would have been found out earlier that the methylprednisolone does not work? I have trouble understanding that one. I find it paradox that the researcher who is so loud about a clinical trial network and to hear that if a clinical trial network was around at the time the MP trials were held we would have known earlier about the risks and also the negligent if any gains from steroid therapy. My interpretation of this new study suggests tampering by selecting certain test subjects to show a benefical outcome in the original trials. Even looking at the graphs the difference at a few months is so slight but what is even more convincing is that after one year the group that received MP and the control group showed no difference. The lines on the graph merge.

    I think we need some real treatments that show definite results that don't rely on doctoring the stats. I believe the important part to insure is safety, if one of us gets up and walks I will be sold on the treatment.

    When Dr. Young says that if a sci clinical trial network were around when he tested MP and he agrees with you that the results would have shown no benefical effect, I will support Dr. Youngs desire to have these networks.

    Just a thought: with all the people who want to try unconventional treatments, (they are going to do it anyway) why not create a center in a country where this is allowed and when some positive results occur bring the therapy back to the US and test it.
    Last edited by bocasci; 06-13-2007 at 06:11 PM.

  6. #126
    Senior Member spidergirl's Avatar
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    Forget the BS

    Will "chronic completes" ever walk again in the next 20 years is the question. There are obviously enough elements here to work with.

    Pardon me to be hasty but that's the underlying concern. Some people in my family don't believe it and tell me to "live my life, accept my fate and move on" because otherwise I will drive myself nuts.

    On the other side of the spectrum, some of my family believe in a "cure" but don't necessarily understand all the fundamentals that go into it like a lot of people here do.

    Finally, at the end of the day I don't really care who say or thinks what. Proof is all I need. We can raise 10 million dollars but what the hell is that gonna do for us? We need hundreds of millions if not billions. I do what I want and think what I want anyway's; that is why I have chosen to go into the direction of making a film that depicts me only.

    Please people do not jump down my throat. My question is simple and as many times as Dr. Young has said he believes in therapies ( obviously acute's YES - I believe in acute therapies as well) ) but I don't think I ever read him saying he believes in a cure for "chronic completes" in the next 20 years or whatever. Maybe Antiquity can find a post where this has been said.

    The thing that irks me the most is that if I knew than what I know now when I was injured I would have participated in a clinical trial no doubt. There really is no excuse for doctors to not have this 411.

  7. #127
    you want proof along w/ the rest of us, but that won't happen until significant trials occur, which won't happen w/o proper funding.

    do the math, as you would say. no one can accurately predict the answer right now.

    whether anyone believes in a cure for chronics (or not) is a different story.

  8. #128
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by Scott Pruett
    you want proof along w/ the rest of us, but that won't happen until significant trials occur, which won't happen w/o proper funding.

    do the math, as you would say. no one can accurately predict the answer right now.

    whether anyone believes in a cure for chronics (or not) is a different story.
    bla bla bla

    I cannot say whether I believe in one or not. I believe in technology through talking with a girlfriend in Japan and the expos she attends more so than the science. I have always said this.

  9. #129
    Senior Member Foolish Old's Avatar
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    Though I cannot predict what a clinical trial network will do to facilitate cure, I hope that it would assure reliable data about the effectiveness of any tested therapy. My concern is not that some tested therapies will be found to hold little value. If we knew that they worked, testing would not be required. I'm more concerned that not enough therapies will be funded for trial. I am all for experimental procedures. But they need to be documented and follow-up and analysis must take place.

    Quote Originally Posted by bocasci
    What exactly are you saying? Are you saying if at the time the methylprednisolone trials for acute sci were done if a clinical trial network existed, it would have been found out earlier that the methylprednisolone does not work? I have trouble understanding that one. I find it paradox that the researcher who is so loud about a clinical trial network and to hear that if a clinical trial network was around at the time the MP trials were held we would have known earlier about the risks and also the negligent if any gains from steroid therapy. My interpretation of this new study suggests tampering by selecting certain test subjects to show a benefical outcome in the original trials. Even looking at the graphs the difference at a few months is so slight but what is even more convincing is that after one year the group that received MP and the control group showed no difference. The lines on the graph merge.

    I think we need some real treatments that show definite results that don't rely on doctoring the stats. I believe the important part to insure is safety, if one of us gets up and walks I will be sold on the treatment.

    When Dr. Young says that if a sci clinical trial network were around when he tested MP and he agrees with you that the results would have shown no benefical effect, I will support Dr. Youngs desire to have these networks.

    Just a thought: with all the people who want to try unconventional treatments, (they are going to do it anyway) why not create a center in a country where this is allowed and when some positive results occur bring the therapy back to the US and test it.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  10. #130
    Quote Originally Posted by spidergirl
    bla bla bla
    can't handle reality, huh?

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