Announcement

Collapse
No announcement yet.

Cure questions originally PM'd to Dr. Young

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Cure questions originally PM'd to Dr. Young

    Note: the following was a private message to Dr. Wise Young of which he responded and asked me to resubmit it here presumably so that he could answer my 4 questions to all without having to repeat it even though he might be, I apologize for that!

    Date of injury = October 23, 2010

    Injury Level = C3 - C6

    Neurological Level Estimated = C5

    ASIA Level Estimated = C

    Age = 45

    Profession = engineering manager

    I have a few questions about which I suspect you will adhere to the standard responses but I'm going to ask any how;

    1st; what would you do if you had a lump sum of money ( in this case received from the award of an accidental death and dismemberment policy) that would get you just about anyplace in the world for any treatment but was draining like sand in an hourglass as time passes in order to pay for caregivers?… I.e. the longer you wait the less financial resources available to do anything.

    2nd; history showed that Ampyra and its equivalents were netting promising results for approximately 1/3 of the spinal cord injury patients that were using it… Why would this be withheld from those who wished to see if it would help them? I have a hard time accepting that after going through 2 of the 3 phases of clinical trials that the drug company would simply drop it and only seek approval for the MS application which seem to have greater side effects for the patient's and even more questionable benefit…

    3rd; if it's true that 10 percent of the spinal cord is all that is needed to function nearly normally and most spinal cord injuries leave potentially more than that intact why wouldn't there be a focus on something that would assist the body in the process of rerouting signals? I could be wrong but I believe I have read several times that those with natural recovery have been speculated to have had just this happened naturally… This would seem to be an easier task than totally regenerating spinal cord tissue through a damaged area, a process that appears to be very sensitive to rejection by the body…

    4th; in the discussion thread ”Comment on the SCINetUSA phase I/II and III trials” you responded to an individual by the name of Chaz with 3 specific points in July of 2009, the last of which stated, ”The third is finding that over 90% of people who have "incomplete" spinal cord injury are able to recover independent walking. This is really quite a finding and one that one would not expect unless one only needs few axons to achieve walking. ” I saw no specific reference to who established this finding, but I saw no retraction of it anywhere later in the thread… Is this still true? Are my odds of walking as an incomplete 90%?…! That would change my whole view of life in the future… But somehow I get the feeling that is looking through ” rose colored glasses”… Because I know of very few examples of incompletes that have recovered independent walking.

    It is my nature to be investigative, challenging, and assertive. It fits with the profession I chose. Probably in line with what's typical for that as well. I'm not very social in terms of casual discussion and interaction, I get right to the point. It is also my nature to be very ” hands on”, which does not fit my formal training, but is a product of my up bringing. Being that I am truly a hands-on person this injury / imprisonment is ripping at my true essence…

    I have been monitoring and searching the Internet and the CareCure forum since January. I know I’ m by no means unique in my injury circumstances and share many of the same feelings of desperation. It may be a curse but I can look at the history, the prior projections, results to date, and the bureaucratic red tape, and only feel deep concern that my life has ended.… Because I'm Not Living! Going from the independence that I had to now be fed every meal and having my bowel movements dug out of me every morning by a stranger is a nightmare! Not being able to scratch an itch, swat a mosquito, wipe the insidious stinging oils from my eyes, not to mention the inability to perform some of the most intimate acts.

    I'll wrap this up and thank you for the efforts and sacrifices that you have made on behalf of all of the souls so traumatically impacted by this gut wrenching injury. I truly hope your predictions contained in your video on umbilical cord blood and the cure of spinal cord injuries in the next few years truly happens.

    Sincerely,

    Dan

    #2
    I have been monitoring and searching the Internet and the CareCure forum since January. I know I’ m by no means unique in my injury circumstances and share many of the same feelings of desperation. It may be a curse but I can look at the history, the prior projections, results to date, and the bureaucratic red tape, and only feel deep concern that my life has ended.… Because I'm Not Living! Going from the independence that I had to now be fed every meal and having my bowel movements dug out of me every morning by a stranger is a nightmare! Not being able to scratch an itch, swat a mosquito, wipe the insidious stinging oils from my eyes, not to mention the inability to perform some of the most intimate acts.
    Is like if I was reading myself. SCI sucks in all forms and levels, but high injuries are a real fuc.....g nightmare.

    Don´t give up, better times are coming.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

    Comment


      #3
      the answer to #1, IMO, is nothing. if there was something out there fixing SCI for money, even if it was very expensive, we would be hearing about it. and so far i havent heard of anything. hopefully im proven wrong in the very near future.

      Comment


        #4
        Originally posted by Isildur View Post
        Is like if I was reading myself. SCI sucks in all forms and levels, but high injuries are a real fuc.....g nightmare.

        Don´t give up, better times are coming.
        Isildur;Thank you for the words of encouragement, I wish I could see through it to that… Unfortunately I see my personal circumstances as potentially going downhill continuously on several fronts as my completely paralyzed state continues…

        Comment


          #5
          Originally posted by Barrington314mx View Post
          the answer to #1, IMO, is nothing. if there was something out there fixing SCI for money, even if it was very expensive, we would be hearing about it. and so far i havent heard of anything. hopefully im proven wrong in the very near future.
          Barrington314mx, thanks for Responding, you made me realize that item number 1 may not of been clear. I am not looking for a cure", rather anything that might improve me a level or 2… Because where I'm at now I can do nothing for myself. In reading some of Dr. Young's documentation of treatments he followed in Asia and other parts of the world there seems to be doctors who have helped patients improve their conditions. I don't know if any of it's worth the risk, but I thought I would ask. The primary point is the funds exist until their drain for care at which time I would be broke and then eligible for Medicaid… Or other forms of assistance.

          Comment


            #6
            again, i still think if there were something even the slightest bit helpful that bumps you up even a level, it would be widely known. but if you find something, please share your experience, because i know of nothing aside from physical therapy places.
            there was a place in germany that was doing bone marrow i believe, but has since been shut down. i dont think they could show improvements that out weighed the risk.
            theres this place too that does some kind of sci treatment. but dont think they have any results to prove if it helps at all. if you try this, PLEASE let us know how it went and worked.
            http://www.stem-cell-center.com/comp...ll-center.com/

            Comment


              #7
              My answers are embedded:

              Originally posted by Higgi View Post
              Note: the following was a private message to Dr. Wise Young of
              which he responded and asked me to resubmit it here presumably so that he could answer my
              4 questions to all without having to repeat it even though he might be, I apologize for
              that!


              Date of injury = October 23, 2010

              Injury Level = C3 - C6

              Neurological Level Estimated = C5

              ASIA Level Estimated = C

              Age = 45

              Profession = engineering manager

              I have a few questions about which I suspect you will adhere to the standard responses but
              I'm going to ask any how; @ I would be interested to know what you think "standard"
              answers would be to these questions.


              1st; what would you do if you had a lump sum of money ( in this case received from the
              award of an accidental death and dismemberment policy) that would get you just about
              anyplace in the world for any treatment but was draining like sand in an hourglass as time
              passes in order to pay for caregivers?… I.e. the longer you wait the less financial
              resources available to do anything. @ I would invest the funds into the
              stock market with a very good money manager and make more money. You do not want to run
              out of money.


              2nd; history showed that Ampyra and its equivalents were netting promising results for
              approximately 1/3 of the spinal cord injury patients that were using it… Why would this be
              withheld from those who wished to see if it would help them? I have a hard time accepting
              that after going through 2 of the 3 phases of clinical trials that the drug company would
              simply drop it and only seek approval for the MS application which seem to have greater
              side effects for the patient's and even more questionable benefit… @ Acorda
              Therapeutics invested almost everything that it had into clinical trials to assess Ampyra
              in spinal cord injury, testing over 800 patients in two phase 3 trials. Neither trial
              showed that Ampyra had a significantly different effect on spasticity, the main outcome
              measure used. The only trials that showed that 4-aminopyridine was effective in a third of
              the patients were earlier non-controlled phase 1 and 2 trials. In contrast, the two phase
              3 trial of Ampyra in patients with multiple sclerosis showed highly significant benefit on
              walking speed of patients, as well as fatigue and other measures. It was a great
              disappointment to everybody but that is what the clinical trials showed. Meanwhile,
              doctors can prescribe and people can still buy Fampridine from compounding pharmacies. The
              company has no choice. It cannot sell a drug for an indication that the FDA did not
              approve.


              3rd; if it's true that 10 percent of the spinal cord is all that is needed to function
              nearly normally and most spinal cord injuries leave potentially more than that intact why
              wouldn't there be a focus on something that would assist the body in the process of
              rerouting signals? I could be wrong but I believe I have read several times that those
              with natural recovery have been speculated to have had just this happened naturally… This
              would seem to be an easier task than totally regenerating spinal cord tissue through a
              damaged area, a process that appears to be very sensitive to rejection by the body…
              @ One of the hottest areas of rehabilitation research today is comparing
              different types of locomotor training to restore walking, based on the premise that such
              training enhances plasticity, reinforces desirable connections, and suppresses undesirable
              activity (pain and spasticity). Scientists are not (I certainly do not) aiming to
              regenerate the spinal cord totally. We are trying to regenerate enough axons to restore
              function in people who have severe and chronic spinal cord injuries. Geron is
              transplanting cells that may be immune-rejected and they are in fact using the immune
              suppressant cyclosporin to prevent the rejection. Many scientists are using autologous
              cells or HLA-matched cells that are less likely to be immune-rejected even without
              immunosuppression. We are transplanting umbilical cord blood cells that are HLA-matched
              to the recipient and combining the transplants with lithium and intensive locomotor
              training.


              4th; in the discussion thread ”Comment on the SCINetUSA phase I/II and III trials” you
              responded to an individual by the name of Chaz with 3 specific points in July of 2009, the
              last of which stated, ”The third is finding that over 90% of people who have "incomplete"
              spinal cord injury are able to recover independent walking. This is really quite a finding
              and one that one would not expect unless one only needs few axons to achieve walking. ” I
              saw no specific reference to who established this finding, but I saw no retraction of it
              anywhere later in the thread… Is this still true? Are my odds of walking as an incomplete
              90%?…! That would change my whole view of life in the future… But somehow I get the
              feeling that is looking through ” rose colored glasses”… Because I know of very few
              examples of incompletes that have recovered independent walking. @ I have
              discussed the recovery of walking in incomplete spinal cord injury extensively on
              CareCure. This is not an isolated finding. The ability of people with initially
              incomplete spinal cord injury to recover walking is well established and accepted. Please
              do a search on CareCure for topics that I have posted with the word "Dobkin". You should
              look up the primary papers and read them yourself. Over 90% of people who are "motor
              incomplete" (ASIA C) during the first few days after injury recover walking. Those
              started out as ASIA A (American Spinal Injury Association Impairment Scale A) do not
              recover as much function. By the way, many people with so called "complete" spinal cord
              injury also recover some sensation below the injury site and occasionally motor function
              in segments close to the injury. You are less than a year after spinal cord injury and
              still have some recovery to look forward to.


              It is my nature to be investigative, challenging, and assertive. It fits with the
              profession I chose. Probably in line with what's typical for that as well. I'm not very
              social in terms of casual discussion and interaction, I get right to the point. It is also
              my nature to be very ” hands on”, which does not fit my formal training, but is a product
              of my up bringing. Being that I am truly a hands-on person this injury / imprisonment is
              ripping at my true essence… @ It is good to be investigative, challenging,
              and assertive. I strongly encouraged you to read the primary literature, to know the
              evidence concerning spinal cord injury. For example, the usual clinical assertion that a
              person with a "complete" spinal cord injury has a "transection" is usually false. Doctors
              who tell patients with spinal cord injury that they will not recover, often before they
              even examine them, are often wrong. Christopher Reeve never accepted his doctors' opinion
              that he would never feel or move again below the neck. He recovered sensation through
              most of his body after 2 years. He could wiggle his left index finger and lift 5 lb
              weights with his legs under water. Of course, he needed regenerative therapy to improve
              his recovery and it breaks my heart that he will not be here to see the cure for spinal
              cord injury that he fought so hard for.


              I have been monitoring and searching the Internet and the CareCure forum since January. I
              know I’ m by no means unique in my injury circumstances and share many of the same
              feelings of desperation. It may be a curse but I can look at the history, the prior
              projections, results to date, and the bureaucratic red tape, and only feel deep concern
              that my life has ended.… Because I'm Not Living! Going from the independence that I had to
              now be fed every meal and having my bowel movements dug out of me every morning by a
              stranger is a nightmare! Not being able to scratch an itch, swat a mosquito, wipe the
              insidious stinging oils from my eyes, not to mention the inability to perform some of the
              most intimate acts. @ Many people here share your experience. I hope that
              they will post about their experiences.


              I'll wrap this up and thank you for the efforts and sacrifices that you have made on
              behalf of all of the souls so traumatically impacted by this gut wrenching injury. I truly
              hope your predictions contained in your video on umbilical cord blood and the cure of
              spinal cord injuries in the next few years truly happens. @ Thank you and you
              are welcome.


              Sincerely,

              Dan
              Last edited by Wise Young; 6 Sep 2011, 1:24 AM.

              Comment


                #8
                Wow - powerful thread this.

                I sincerely hope Wise is on to something too.

                I spoke to my neurosurgeon today. He said he and is team are ready and willing to apply any reputable therapy. He wasn't in a position to predict as he said he doesn't do research but warned against "hoping for a cure" and wishing your life away. On the other hand he didn't say that hoping for a cure was necessarily a bad thing nor impossible.............frustrating

                He's such a nice guy and I am irritating (this injury has made me so)

                Comment


                  #9
                  Originally posted by Christopher Paddon View Post
                  Wow - powerful thread this.

                  I sincerely hope Wise is on to something too.

                  I spoke to my neurosurgeon today. He said he and is team are ready and willing to apply any reputable therapy. He wasn't in a position to predict as he said he doesn't do research but warned against "hoping for a cure" and wishing your life away. On the other hand he didn't say that hoping for a cure was necessarily a bad thing nor impossible.............frustrating

                  He's such a nice guy and I am irritating (this injury has made me so)
                  my surgeon told me he expects good return results for me, while my PM&R doc told me he does expect anything to come back. talk about frustrating.

                  Comment


                    #10
                    Originally posted by Wise Young
                    @ Acorda
                    Therapeutics invested almost everything that it had into clinical trials to assess Ampyra in spinal cord injury, testing over 800 patients in two phase 3 trials. Neither trial showed that Ampyra had a significantly different effect on spasticity, the main outcome measure used. The only trials that showed that 4-aminopyridine was effective in a third of the patients were earlier non-controlled phase 1 and 2 trials. In contrast, the two phase 3 trial of Ampyra in patients with multiple sclerosis showed highly significant benefit on walking speed of patients, as well as fatigue and other measures. It was a great disappointment to everybody but that is what the clinical trials showed. Meanwhile, doctors can prescribe and people can still buy Fampridine from compounding pharmacies. The company has no choice. It cannot sell a drug for an indication that the FDA did not approve.
                    A REAL DISAPPOINTMENT. There were several who invested in Acorda here.

                    The trial for SCI was flawed ... I am reluctant to believe this company again. What's that saying about fool me once, fool me twice?

                    Compounding pharmacies aren't going to fill this anymore since it's now on the market .. I read that on another board I read having to do with MS.
                    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                    Comment


                      #11
                      i think this sums up the current situation

                      Stem cell therapies

                      Stem cell research is in its relatively early stages. While laboratory and animal research to date holds great promise for treating a range of illnesses in the future there are currently no stem cell therapies that are recommended for people with spinal cord injury.

                      Comment


                        #12
                        Originally posted by Barrington314mx View Post
                        my surgeon told me he expects good return results for me, while my PM&R doc told me he does expect anything to come back. talk about frustrating.
                        Your sugeron is fixed in the old school ,has no faith in future.

                        Comment


                          #13
                          Originally posted by peterf View Post
                          i think this sums up the current situation

                          Stem cell therapies

                          Stem cell research is in its relatively early stages. While laboratory and animal research to date holds great promise for treating a range of illnesses in the future there are currently no stem cell therapies that are recommended for people with spinal cord injury.
                          there are not more therapies available only because we have no network setup up to try existing potential treatments on humans

                          i have read for years abstracts where at the end it says this treatments is ready for human clinical trials

                          the hard and expensive part
                          http://justadollarplease.org/

                          2010 SCINet Clinical Trial Support Squad Member

                          "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                          .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

                          Comment

                          Working...
                          X