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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
    schmecky,lets start with this.All the people that have had treatment post something [img]/forum/images/smilies/rolleyes.gif[/img] 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

    Comment


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

      Comment


        #4
        AGREED!
        A CURE NOW!

        Comment


          #5
          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?

          Comment


            #6
            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)

            Comment


              #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.

              Comment


                #8
                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
                T12 Incomplete - Walking with Crutches, Injured in Oct 2003

                Comment


                  #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.

                  Comment


                    #10
                    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.

                    Comment


                      #11
                      Dr. Y,

                      I have not promoted the Ankara, Turkey nor the Novosibirsk, Russian treatments. However, people will seek these types of treatments one way or another. Kao, Lima, and Huang are obvious examples.

                      The objective of my suggestion is grounded on your comment concerning the fact that return utilizing the aforementioned treatments has been limited. Documentation was good at first, then over time decreased to a trickle, then came to a near halt due to limited returns. If the lack of returns would have been properly documented, there would not currently be an 18 month waiting period to have Huang's procedure. Those waiting in line to receive Huang's treatment may not qualify for more effective treatments in the future.

                      Whether the Turkish/Russian procedures prove to be effective or not, some type of documentation needs to be done.

                      No procedure is better than an ineffective one.

                      Comment


                        #12
                        Originally posted by cementhead:

                        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?
                        Not true, Cementhead. Some suggestions:
                        Keep e-mailing at least once per week. Call them on the phone-frequently-until you get a response. Call the district offices if you need to. Visit them when they are in their home state the month of August. Get your friends and family members to contact them.

                        If you need help or have any questions, please e-mail me at csmaus1@yahoo.com.

                        www.unite2fightparalysis.org

                        "Either you decide to stay in the shallow end of the pool or you go out in the ocean." C. Reeve
                        Please submit your photo and story of hope:

                        http://bridges2hope.unite2fightparalysis.org/


                        http://unite2fightparalysis.org/

                        Comment


                          #13
                          I agree that there should be a dedicated thread which would track the progress of patients who have been through these experimental treatments.(Only if they are willing, it is understandable that some people do not want to be bombarded with e-mails and questions). I would even volunteer my time to moderate the thread. I have been in contact with several patients and have yet to hear enough positive progress to pursue the treatment for myself. I feel Schmecky has a great idea here and it should be pursued since it would be beneficial to so many people. I am sick of endless research of all these procedures and no follow-up statistics look at. If you have gone through one of these procedures and are willing to post about them please state on this post your willingness to participate. Please do!

                          http://filbs.friendpages.com

                          I want it all, I want the fairytale~Pretty Woman
                          I want it all, I want the fairytale~Pretty Woman

                          Comment


                            #14
                            I think Schmeky has a good point but I personally rely on Wise Young's opinion as to whether a treatment represents any kind of cure.
                            Right now there is no treatment that will give any more than minimal return.

                            However, a new topic called Treatments may have merit so as to be able to find all first hand reports quickly and easily although we can't force anybody to report on their therapy if they choose not to.

                            Comment


                              #15
                              Interesting idea... if you guys are serious & can figure out a way to get folks to participate, I can easily get a new site (e.g. trackingtreatments.com/.org) running and have it function as a blog/journal for those who have undergone treatments, and essentially only give out accounts to those who are legit. A forum structure would just get messy, IMO.

                              Let me know... I have server space already & could just piggyback it off one of my existing accounts... meaning the cost would be next to nothing.

                              This idea would be kinda informal (I suppose), but ultimately there needs to be some consistent way to follow-up w/ patients, but that would require the structure of a well-managed network for trials... right?

                              Comment

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