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Thread: Tracking Treatments

  1. #1
    Senior Member Schmeky's Avatar
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    Tracking Treatments

    There seems to be some interest in seeking SCI treatments in Novosibirsk, Russia.

    There is also interest in the treatments being discussed in Ankara, Turkey, via Dr. K.

    Many have traveled in the past to be treated by Dr. Carl Kao in South America, Carlos Lima in Portugal, and Dr. Huang in China. It has been difficult for many new board members to track the progress (or lack of) of these treatments.

    I wonder if other board members think we need to track the progress of SCI's that are seeking treatments in the near future? Perhaps a dedicated thread of those that seek treatment, their ASIA status, injury level, etc.

    We need to keep an accurate journal of these treatments to determine if the results are positive or negative.

    Agreed? Suggestions? Don't care?

  2. #2
    Senior Member cementhead's Avatar
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    schmecky,lets start with this.All the people that have had treatment post something then tell everybody any real results.if no real results say so.since i have been coming to this site i have noticed it is like pulling teeth to get any past treatment info.boeg03 and boeg04 are almost worthless.there is literally no info.take susan(sorry susan)she was in the spotlight for portugal.i noticed a post from superstar (we know who that is)Stating how she would update her progress.That was June 5.Still no update.I would think you would have the courtesy and respect to tell people you had no beneficial results.Hell i can't sit up straight,use my hands,do a transfer hold a fork nothing!In approximatly 4 weeks I am supposed to go to Turkey and you can bet your ass i will post results (good or bad)The rest of you people that have had treatment get your head out of your asses and let people know if your treatment was really worth it

  3. #3
    It seems to me that the lack of big news is the news...

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  5. #5
    Senior Member Schmeky's Avatar
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    cementhead,

    I agree. That's kinda' how I see it also.

    Perhaps we can get those planning treatments to let the forum know. As a bare minimum we need:

    <LI>ASIA classification
    <LI>Years post
    <LI>Injury level
    <LI>Age of patient (optional)
    <LI>Where (country) treatment will be
    <LI>Scheduled treatment date
    <LI>Type of treatment(s) to be conducted
    <LI>What physical therapy will be utilized after the procedure
    <LI>Agree to provide regular, accurate updates on their progress for up to 12 months or more

    With permission from the moderators, a bold topic defaulting to the top of the cure forum could be established.

    With folks planning to go to Turkey in the next few months, we need to get a dedicated thread established soon.

    cementhead,

    You're a prime example, I hope you have excellent results and I would like to send you a care package when you get over there. I had no idea you were going.

    Richwelsh63 may have the procedure performed the end of July, first of August. I feel confident he will post his progress for the benefit of the forum members.

    Suggestions?

  6. #6
    Senior Member cementhead's Avatar
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    Schmeky,living in today's world you would think doctors would be very thourough in there exams.I was in the hospital almost 4 months in that time I did not here ASIA one time.I will tell you this.From what I can tell I have a C6 neurological level injury.I have biceps pretty strong,wrist movement upwards,shoulders are pretty good,the muscles in my upper back seem to function,maybe some lats or maybe my shoulders compensate a little.My stomach i can push out but I can't suck it in.that is all i have for motor.I believe after 10 months of exercise I have had zero motor return.Everything I have has been there since my accident.For sensory I have pinprick almost to my chest down the inside of my arms and on my thumbs.My sense of touch varies.I can feel the outsides of my arms my index fingrs on both hands.My rightside I can feel touch pretty much to my waist.Ican feel different amounts of deep tissue in my calves my left toes hurt when you touch them I can feel the reflex test on the bottom of my right foot.I can feel something when i get an erection.not normal but something mostly on the head.Also I get a tingling in the back of my head when my bladder gets 4 or 5 hundred cc's in it.I also get the same thing for bowel movements.That is MY ASIA.I have not posted about going to Turkey because I have been talking to kleinbloesem for 5 months and some things don't quite fit right.I really can't afford to go but I really can't live with myself if I don't try.I am on the list for china in april and if Turkey don't work hopefully china has it figured out.EITHER WAY I WILL POST AFTER I GO
    (LET US NOT TALK ABOUT WHAT NEEDS TO BE DONE LET US TRY SOMETHING EVEN IF IT IS WRONG)

  7. #7
    A couple of the treatment recipients do have progress threads. Many of them are in the summary threads. Significant functional recovery may take months to years manifest, so it may not be realistic to expect a high volume of updates so soon after receiving a treatment. Most of those who've announced plans to go do report back. A thread containing the type of details mentioned here would require a high degree of participation. Curt attempted this a while ago here but if someone wanted to start another topic, I doubt if the cure mods would have a problem featuring it.

  8. #8
    Senior Member MikeC's Avatar
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    Schmeky, I think this is a great idea but wonder how best to organize it. It seems to me that there could be a new forum called treatment. Then in that forum there could be different breakdowns: Turkey, China, Portugal, etc. Then people could start an individual thread under the place where they go for treatment. I think it would be a lot easier to follow the threads then it would if there was just one thread in the current cure forum where everyone who went for treatment put their updates. Mike

    T12 Incomplete - Walking with Crutches, Injured in Oct 2003

  9. #9
    schmeky and cementhead,

    Perhaps the reason why there is not a lot of data is because most of the people who have had the transplants in Portugal and Beijing do have see enough return occurring at 2-3 years to post about them? If a lot of people are walking and getting a lot of function back beyond the first year as a result of the therapies, you probably would be hearing from them here. While I appreciate the sentiment of "trying something even if it is wrong", isn't it about time that people start asking why their Congressmen and Senators are not supporting spinal cord injury clinical trials in the United States, why people are mortgaging their houses to go overseas based on internet anecdotal reports, and why the United States is so far behind on spinal cord injury clinical trials? I don't understand why people are letting Weldon get away with saying that nasal mucosal transplants are making people with spinal cord injury better in Portugal based on anecdotal data when he has not signed up as a sponsor of the Christopher Reeve Paralysis Act.

    Wise.

  10. #10
    Senior Member cementhead's Avatar
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    Wise,I think schmecky has a great idea.I also think mikes idea of a new forum called treatment is a great idea.About bugging our representatives.Sending an e-mail is really all a C6 quad like me is capable of.If my state rep chooses to reply (which they have not)what I supposed to do?As far as mortgaging my house for treatmentIf people posted all their negative results I wouldn't try to travel.I believe by not responding to questions about treatment.Our fellow members are leaving us in the dark.I for one want some kind of hope.When other people have had the treatment and do not act as if it was a waste of time.That tells me I should try it.The government does not give substancial aid to a person in my condition and I cannot continue to deplete every resource I have.To wait for all the political B.S. to clear from this country makes me an old man before something can be done to help me.It also drives me and my family into poverty.I cannot allow that to happen.
    If this is how I have to live the rest of my life I want the artificial life support (b&b) removed and the right to be uthinized to stop the pain&suffering to end.

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