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Thread: susan fajt, what changed your mind??

  1. #1
    Junior Member dentsp's Avatar
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    susan fajt, what changed your mind??

    hi susan,

    i dont wish to be difficult but i wanted to understand why you are so negative about dr limas procedure now? this is a quote taken from you at a Science, Technology, and Space Hearing:Adult Stem Cell Research wednesday, July 14 2004 :


    "Only part of my dreams has been attained. But I have come farther than my American doctors ever thought. My most recent MRI took place 5 days ago.
    The doctors were in disbelief at the improvement they saw where my spinal cord had been injured. I have recovered some functional improvement through Dr. Lima's procedure, such as the ability to hold my bladder and at times even void on my own. Sensation has been restored, though it is not completely normal. When concentrating I am now able to contract my thighs slightly; once again, this was also impossible before my surgery in Portugal. "

    i'm asking as i am going for the surgery early next year and am trying to find out as much as possible before i go. please dont take offense at my questioning, i just need to know.

    thank you

    steve

  2. #2
    Senior Member teesieme's Avatar
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    Red face

    Okay, I looked things up to answer my prior question posted.

    Being that I am one who is concerned about a complete stranger as well as someone I know, I am thinking through Andy's post I would give a imo response as if it were me, I would want the opinions of others with something so important of a decision to make...

    My son and I also seriously considered surgery in Portugal about a year ago or so. We had mri's sent, viewed, etc. and at that point he was approved. It was then a matter of evaluation prior and setting a date. Dr. Lima was very good and helpful in trying to make this decision, as well as others who had been there or are involved in research as such. For us, with my son, we decided that his recovery at that time as well as signs of continuing recovery two years post outweighed the risks, of even just "a surgery". Viewing the mri's since his initial injury and recent for the surgery, it was noted his lesion had lessened over those couple years...it made this mom go, hmmmm....
    and again being mom, I just couldn't justify the risk of him losing what he had/has gained at the time. Not for something invasive as such and he agreed. It was a decision to not proceed at this time Dr. Lima respected and although there are days that my son wants desperately to try something, we haven't found something that feels right just yet...

    Anyhow here's the point of my response to your post...In reading and speaking with persons who have had surgeries as such, it would seem the intensive therapy received thereafter is in question within them personally as well as with others professionally as to it being in part to recovery gained. And then again there is question the removal of the scar tissue allowing some healing/gains, the sc transplant itself, as well as the question of post injury and surgery, meaing the timeframe between initial injury and the surgery, that window that seems to be open for years thereafter for some not just within the first year.

    I guess it just isn't known as yet with all that may be~

    My best to you in the final decisions of. We await the day that something comes up for my son with risks and possibilities worth it for him personally.

    I hope someone answers you in more detail of what things were prior their surgery and since. Take care~ T.
    Last edited by teesieme; 09-06-2005 at 02:07 PM. Reason: I have an editing issue/habit!!!
    "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.

  3. #3

    My mind has not changed.

    I am not "negative" about Dr. Lima's procedure, i simply wished that he would improve upon his procedure before doing other individuals who also have substained a SCI. I applaud Dr. Lima for his efforts to bring human clinical trials into fruition. It is true that i have recovered all of the things listed below and still *think* that i am continuing to improve. With this being said, i would like for everyone to understand that i went to have Dr. Lima's procedure one year and a half after becoming injured. The first six months after my injury i spent with my ex-fiance trying to insure that he would come out of his comma and walk and talk again. I was very concered about him and did not think of my own recovery until he was showing great progress, so i then sought out for my own. I went to Tirr and it was tirrible as they had nothing to help me recover in the department of PT. The only thing i knew to do was to create my own inventions, so i did and they work great for me! What i am trying to convey is that i can not say with certainty if i got the benefits from his procedure or from time or from the inventions that where made or from persistance or what have you. I do not regret having the surgery as it in my mind gave me the hope that i would walk again, at least it gave the belief that it might be possible. Looking back, being that plenty of time has passed i am certain that Dr. Lima should stop and evaluate the 45 sum patients and re-group and try something in combination so that it might better help those to regain functional improvement. I have had asia scores and yes they did improve after the surgery, yet most people improve with time no matter if they have had a procedure or not. It is this simple, i do not live in a world of regrets, nor have i changed my mind on anything as i am glad i went otherwise i would have never fought as hard as i did on many levels, he gave me strength and i thank Dr. Lima for this as he is a good man. I do not agree with him continuing to do more surgeries and i have spoke with him at length due to my success or lack of. If you choose to have this procedure done then you will spend at least 35,000K and you can hope for the best but do expect the worst. It is imparative that something be added in combination with this brave doctors surgery, otherwise you will either get back minimal results to none. I hope this helps others understand where i stand and why.
    Godspeed~
    Susan
    www.sciwalker.com

  4. #4
    Hello Susan,
    I am an attorney in Montreal and I was watching a program on stem cell surgury and I saw you in the telecast. I was curious as to how much progress you made and how you are doing so I looked you up on the web.
    May I ask if there is any further progress since this post?
    All pf my best hopes and prayers go out to you,
    Robert Teitelbaum
    Montreal
    www.quebecfamilylaw.com
    \\

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