Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Cure questions originally PM'd to Dr. Young

  1. #1

    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. #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

  3. #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.

  4. #4
    Quote 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…

  5. #5
    Quote 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.

  6. #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/

  7. #7
    My answers are embedded:

    Quote 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; 09-06-2011 at 01:24 AM.

  8. #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)

  9. #9
    Quote 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.

  10. #10
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    19,320
    Quote 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

Similar Threads

  1. Apologies to those who PM'd me
    By Steven Edwards in forum Announcements & Feedback
    Replies: 2
    Last Post: 06-15-2010, 11:41 AM
  2. Dr. Young – some cure questions
    By Leif in forum Cure
    Replies: 6
    Last Post: 11-15-2008, 01:16 PM
  3. 16 y.o. questions about a cure
    By Bens Mom in forum Caregiving
    Replies: 11
    Last Post: 11-09-2008, 04:39 PM
  4. Dr. Young-questions about cure
    By bberr in forum Cure
    Replies: 2
    Last Post: 06-26-2004, 12:37 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •