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Thread: To Susan Fajt-Tumors from Lima's Therapy?

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  1. #1

    To Susan Fajt-Tumors from Lima's Therapy?

    I moved this out of another thread in order to keep that one on topic. I hope Susan sees my question, and answers it.


    Quote Originally Posted by Susan Fajt
    Bethany- I never stated that i had regrets about my procedure, however i strongly believe that it should be stopped due to the fact that it does not work and *could* have negative effects. Dr. Lima never had rats walking using his technology either btw. Honestly, think about it, do you think that there are people out there who would be willing to take a chance with a proven therapy in animals in hopes of restoring their mobility, of course! I do not think this is thought of as being a maniac rather doing extreme measures in hopes that they would no longer be paralyzed. Take a vote, or simply look to all the people who are still going to Portugal because desperate people do desperate things, expecially with this horrific condition. Some people are like yourself and choose to set back and wait for solid proof before taking drastic measures, i am by nature a risk taker and feel that many others would/are doing the same thing..

    Susan,

    I went the extra step and searched for your post about your tumor concerns from Dr. Lima's procedure. I just KNEW I had seen that somewhere. Anyway, I found it. This is why I said that I was surprised that you are in such a hurry to get willing humans injected with Dr. Kerr's new therapy.

    Believe me, I want this cure badly, and soon. I don't want tumors appearing in my (or anybody's) spinal cord. There IS a reason for extensive animal testing. It's not because they think the animals are more important than us. Those poor animals are being sacrificed for us, so that we won't suffer unexpected consequences-like tumors on our spinal cords.

    In some ways, I am also a risk-taker. I hate to see people disregarding concerns like tumors though, when you expressed that concern yourself 2 weeks ago. Some things, once done, can never be undone.

    Maybe you could tell us more about the concerns you expressed re tumors, the testing that was done, and why you are no longer concerned about this type of unwanted result from a new therapy? You did mention that this was all important, so this is a good time to enlighten us about your thoughts on side effects from rushing into unproven treatments.

    I AM glad that the testing you had done apparently eased your concerns about tumors and the Lima procedure. I think it would be good for us to know what caused your concerns and why you're no longer worried.

    From Susan Fajt, 10-19-2006
    "You are so right, i probably should post my improvements as it does give hope to others who do not know what to do nor where to go in hopes of functional recovery. Honestly, I needed to take a *long* vacation as i have underwent many tests to make certain i had not developed tumors due to my procedure through Dr. Lima's procedure as i have *lots* of concerns, still do.. I will post more in the appropriate thread as these tests are important and should not go unannouced. Anyway, i am still walking with braces and a walker, you would be proud!
    It is outrageous that a cure is not more visible and it is up to us as a community to change this situation at hand, may Godspeed be with us.. Glad to back to the computer/work btw. (sigh)"

    10-19-2006

    Susan Fajt

    http://sci.rutgers.edu/forum/showpos...9&postcount=20

    It's okay to be a risk-taker, but if you're experiencing fears about tumors following a procedure it would be good to keep the sci community informed. If people start popping up with spinal tumors, it's not only going to set them back, it will set the entire field back.

  2. #2
    Well, Susan was kind enough to post in another thread that she is completely healthy. I had hoped for more details, such as what was causing the concern and what tests relieved it. But I am glad to know that it isn't a problem.

    We really do need to pay attention to people that develop problems after procedures. Since there is no standardized follow-up in place for these patients, it's up to us to get the details (where they exist).

    Carecure does a good job of informally keeping track of improvements after various therapies that are done worldwide. We ignore potential nasty side effects at our own, and everybody else's, peril.

    A clinical trial network, with standardized testing pre and post procedure, sure would be a help. One with follow-up that looks for side effects...not just improved function, but loss of health or function also. We can praise "the pioneers" all we want but we need to learn from their experiences or the pioneering accomplishes nothing.

  3. #3

    Carefull with what you focus on.

    Quote Originally Posted by betheny
    Well, Susan was kind enough to post in another thread that she is completely healthy. I had hoped for more details, such as what was causing the concern and what tests relieved it. But I am glad to know that it isn't a problem.

    We really do need to pay attention to people that develop problems after procedures. Since there is no standardized follow-up in place for these patients, it's up to us to get the details (where they exist).

    Carecure does a good job of informally keeping track of improvements after various therapies that are done worldwide. We ignore potential nasty side effects at our own, and everybody else's, peril.

    A clinical trial network, with standardized testing pre and post procedure, sure would be a help. One with follow-up that looks for side effects...not just improved function, but loss of health or function also. We can praise "the pioneers" all we want but we need to learn from their experiences or the pioneering accomplishes nothing.
    betheny
    with all your do respect i think you are focusing on the wrong things.
    Dr.Lima has posted his findings.
    We DO NOT really need to pay attention to people that develop problems after procedures, you can be sure that if that happens we will hear about it in all detail, many European and US research centers and bio companies would love to have Drs Limas and others negative info on the media. we can read, pay attention and only than can we deside.

    Have you seen the CC poll on Limas? 42% impruved some, this coming from a forum that tends to be negative on Lima. and others.
    If Dr.Huangs 600+ procedures in China would have coused one death or bad tumors we would have herd about it.
    If Susan would have herd of any negative and abnormal complications she would have never been a pioneer.
    If Susan would have never have been seeded with so much negative info about Lima she would have attributed her bit of impruvement to lima.
    Susan is a warrier and she is learning the power of the mind the hardway and she belives now that what Dr.McDonalds promissed her that she will walk again is not false hope... MORE POWER TO HER, She will walk again.

    IF SOME ONE HAS THE ECONOMIC MEANS AND THE MIND POWER TO TRY A RELATIVE SAFE EXPERIMENT LET THEM BE PIONEERS DONT SEED AND FEED FEAR IN TO THIS BRAVE SOULS FOR GODS SAKE.

    Fear and mind strenght were put in to test in my last paragliding flight and i got injured badly but i have learned form my mistake and guess what "I WILL FLY AGAIN!!!"

    If a soldier goes in to war thinking he is going to die "HE MOST LIKELY WILL" if he goes in thinking that he will give it 110% to do his job and come out alive "he most likely will"

    we are at war against lack of scientific colaboration
    between SCI researchers, religious extrimist and lazy ignorant republican politicians it is our job to come out walking.

    Praying in numbers is a good thing and it will help, but it is NOT enough, we must take individual decisions with strenght and determination and focus on a cure.
    After all the $$ and many years spent in research we must demand colaboration whith-in the researchers to get something flowing trough the pipeline NOW.
    Glider

  4. #4
    Quote Originally Posted by glider
    We DO NOT really need to pay attention to people that develop problems after procedures, you can be sure that if that happens we will hear about it in all detail, many European and US research centers and bio companies would love to have Drs Limas and others negative info on the media. we can read, pay attention and only than can we deside.

    Have you seen the CC poll on Limas? 42% impruved some, this coming from a forum that tends to be negative on Lima. and others.
    If Dr.Huangs 600+ procedures in China would have coused one death or bad tumors we would have herd about it.
    If Susan would have herd of any negative and abnormal complications she would have never been a pioneer.
    Glider, AFAIK there were reported mortalities among Huang's OEC's spinal cord injuried patients (may or may not be related to his procedure).
    Daniel

  5. #5
    Glider-I was following up about concerns Susan expressed a few weeks ago, wherein she stated "Honestly, I needed to take a *long* vacation as i have underwent many tests to make certain i had not developed tumors due to my procedure through Dr. Lima's procedure as i have *lots* of concerns, still do.. I will post more in the appropriate thread as these tests are important and should not go unannouced."

    http://sci.rutgers.edu/forum/showpos...9&postcount=20

    I watched for the follow-up report but didn't see one.

    I have to beg to differ with you. The media would not automatically follow up on such a side effect, unless the patients themselves contacted the media. I don't know what kind of tests Susan underwent, nor what the results were, but the facilities performing the tests would not be allowed to announce the discovery of tumors if they found them.

    No, if we hear rumors of such side effects, we would be well advised to follow up on those rumors. I'm really pleased that Susan's concerns were unfounded. Still wish she would post more, since she said the tests are important and should not go unannounced.

    Again-I am VERY HAPPY she doesn't have tumors!
    Last edited by betheny; 11-06-2006 at 01:05 PM.

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