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Thread: China - then and now

  1. #1

    China - then and now

    A year ago as many here read as fellow CC members went to China for treatent there was a great swell of hope. There seems to be some erosion of expectation since that high point. I haven't read any posts from these brave pioneers that show us beyond a doubt that what was promised has actually been delivered upon. Only very minor change is what I'm hearing. Did we get caught up in the moment or is there any measurable difference in people being treated in China? Don't get me wrong, the research is wonderful - but is the truth about expectation based on fact or hope? I'm all for research and clinical trials but lets slow down long enough to figure out what is fact and what is fiction.

  2. #2
    Senior Member Schmeky's Avatar
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    Rusty,

    Dr. Huang has said from the very beginning the procedure in China "WAS NOT A CURE". You are aware of this, so if there have been high expectations, they have been imposed by others.

    This was a risk, and for many quads, the prospect of regaining a level or 2 could potentially make all the difference in the world.

    I admire Huang greatly, but I wonder why he continues to perform a procedure that provides little to no results. This could discredit his efforts.

    Hopefully, the promise of effective combo lab results will start to filter in soon. My fear is that there may be a China based clinical trial infrastructure without a good therapy to apply.

    It's "only" 8 short months til' the December HKU-SCI symposium is scheduled. 8 months!!

  3. #3
    Rusty, in my opinion, none of the patients that have received cell transplants has had dramatic motor recovery. Unfortunately, in all the trials, there has been poor and incompletely documentation of long-term recovery. I can only speak for what has been going on in Beijing because I have seen many of the patients before and after the surgery.

    It is frustrating that people do not read what I have posted. I have said repeatedly that the treament has a modest effect on recovery of function. It appears to restore an average of 4-5 levels of sensory improvement, partial return of 1-2 levels of motor function close to the injury site. Please, people should not be jumping to conclusions.

    Although I have not personally examined patients that had transplants in Portugal, Russia, or Australia, I am not convinced by any of the descriptions that any of other cell transplants have restored walking to patients who were unable to walk to at all before their injuries. Please note that a number of people who were "incomplete" and had some movement in the legs before injury appeared to have recovered more in Beijing. However, we must remember that many people with "incomplete" injuries can and do recover walking without cell transplants or other therapies.

    The experience with cell transplants in China and other countries does indicate that fetal cell transplants (at least as done in Beijing) are safe and do not cause loss of function. The mortality rate has been low, less than 1% in over 500 patients. The olfactory ensheathing glia transplants produce a *measurable* improvement in sensation: an average of 4-5 sensory dermatomes recovery and 1-2 partial motor return in people who had little or no motor and sensory function below their neurological level at the time of surgery. It may have more effects on people who have greater preservation of function below the injury site but we cannot be sure tha this is due to the transplant or from exercise itself.

    Wise.

  4. #4
    Schmeky, you have said repeatedly that the OEG transplants do not do anything at all. On what do you base that belief?

    The obvious direction that we have to head is combination therapies and ways in which to get a source of cells that would not be rejected by the immune system. We are planning to do the former in the ChinaSCINet and the latter is being done in Portugal and Australia.

    We have to start doing some controlled trials in the United States as well with combination therapies.

    Wise.

  5. #5
    Senior Member Schmeky's Avatar
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    you have said repeatedly that the OEG transplants do not do anything at all.
    No sir. I never said "not do anything at all". I base my statement on the fact that some CC members have indicated they actually experienced an increase in pain, others some sensation improvements, albeit limited.

    I commend Huang for his efforts, the world has noticed. It's time to move to the next level.

  6. #6
    I try to update my progress monthly yet some say we who went do not give regular reports. Again, I have been injuried 11 years and had surgery May, 2004. Since surgery my chest muscles and rib cage muscles are back. The muscles in my outer lower arms have filled out again. My belt line muscles are flickering as are my upper leg muscles. I feel I have gotten more than expected. Cure no. Help with coughing and sneezing and trunk stability yes. I also try to answer all email inquiries. stew5758@aol.com.

  7. #7
    Senior Member Hunker's Avatar
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    Dr.Wise - Rusty I am old and hope cure will come soon. May no others suffer. I can not type and am very weak in health. I worked 2days last week. then I was ok now I am in pain. I can only hope that "others" do not suffer for years. I see progress and I am greatfull.

  8. #8
    Dr. Huang is a hero in our book. Only a few years ago, doctors would never think of performing the kind of operations that Dr. Huang has successfully performed hundreds of times. His pioneering efforts have opened the door to the next generation. We should all remember the time before the likes of Young and Haung when no one would ever think of doing a SCI operation. Two years ago we had no reasonable options on the horizon. Now there are OECs and OEGs and soon through the efforts of Dr. Young and his associates in the China SCI Network the next generation of combination therapies. We all have much to be thankful and hopeful for.

  9. #9
    Schmeky, sorry if I misinterpreted you. Many cervical spinal-injured people who received OEG transplans have had descents of their sensory levels to below their nipple (T4). Some people with C6 neurological levels have gotten increased C7 (triceps) and a little C8 (thumb) have gotten somewhat better hand function. Several people who went to Beijing could not grasp a full glass of water before and now are able to do so, albeit weakly. The sensory improvement has been the most consistent. In most the sensory level went from the clavicles to below the nipples. Interesting, almost all have had improvement of their truncal postural control and have return of sweating on their trunks.

    For people who are paraplegic at the upper thoracic, they have also had improved postural control, they have better abdomenal strength, and many regained sensory function. At least one person that I saw, who was only able to stand with braces and crutches but could not walk any distance before surgery, was able to walk with braces longer distances and without using the crutches.

    For people who have had lower thoracic spinal cord injuries, involving T10-12, they have had more and better sensation, better balance, and better ability to walk longer distances. Some people have reported being able to sense their bowel and bladder better. Some say that they are able to do more situps.

    We should be very careful interpreting recovery. Some of the recovery undoubtedly comes from people trying hard at exercising and we know that this alone can bring back some function.

    Many of these people that Dr. Huang has operated on have been spinal-injured for many years, like Stew. Over 90% of the paients were injured more than 2 years before the surgery and had stable neurological function during the 6 months preceding the surgery.

    Regarding pain, most patients describe the development of hypersensitivity and spontaneous pain in 3-4 dermatomes just below their pre-operative neurological level before they regained both pinprick (pain) and light touch sensation in those dermatomes. This usually went away after several months as senation came back in those dermatomes.

    Regarding pain, only one person that I know has had increase in neuropathic pain but he had neuropathic pain before the operation and it is not clear that his pain had gotten worse because of the transplant. Several people who had neuropathic pain before the surgery have told me that their pain declined significantly after surgery and have remained subdued.

    The human results are consistent with the animal results. If you look at the videos of the rats that are reportedly walking after a T13 injury and treatment with OEG transplants, you see that a majority of the rats that had severe injuries (25 mm weight drops) recovered from a BBB score of 3-4 to a score of 7-8. A rat with a score of 10 is able to stand and take some steps with the hindlimbs. Rats that had less severe injuries (12.5 mm weight drops) and who normally would recover to a score of 11-12 by 6 weeks after injury would get BBB scores of 13-15. I would characterize these improvements as "modest" gain in motor strength associated with better postural control and sensation.

    Cell transplants don't usually have dramatic effects on walking scores of rats. This was true of early fetal transplants into cats. Likewise, he U.F. Gainesville trial which transplanted fetal spinal cord tissues into the spinal cord reduced the progressive neurological loss associated with syringomyelic cyst expansion but did not result in major improvements in locomotor function in any of the ten patients who have received the cell transplants.

    To my knowledge, none of the rat spinal cord injury experiments showed large numbers of axons growing across the injury site. It should not so surprising that cell transplants (whether etal OEG or sem cells, umbilical cord blood or bone marrow stem cells) can themselves produce rivers of axons regenerating across the injury site. To get regeneration, we probably have to trea wih some growth factor to get the maximum number of axons to start growing and then some blockers of growth inhibitors in the spinal cord.

    There is also the issue of immune rejection of the cells. We are now looking into the possibility of locally treating the spinal cord with FK506, an immunosuppressant. This was recently reported to not only improve survival of transplanted cells but may have some stimulatory effect on axonal growth.

    Finally, many of the people who have received OEG have not been doing consistent and intensive exercise. For the past few months, I have been worrying and working on designing a clinical trial protocol that I hope will provide convincing data of the therapeutic effects of cell transplants and combined therapies. As soon as we have some consensus on the protocol amongst the investigator, I will present it here for people to consider.

    Wise.

    [This message was edited by Wise Young on 05-09-05 at 08:43 AM.]

  10. #10
    Hunker,

    There are more and more scientists like myself who are driven by the urgency of the situation. When I listen to scientists like Hans Keistead, John McDonald, and Wolfram Tetzlaff, I can hear the urgency in their voices to get therapies to clinical trial. Likewise, doctors like Douglas Kerr, Jim Guest, Brian Kwon, and many others (I really don't like to name people because it usually means that I will inadvertently leave some out) are really working hard on trying to find therapies that can be applied to people.

    EAA, you are correct. Before Dr. Huang did his work, there was a tremendous reluctance of surgeons to re-expose the chronically injured spinal cord. They were afraid of making the patients worse. I think that many are now willing to go ahead if the cells and treatments were available. It would help so much if our government would invest in setting up centers of excellence that are ready to do clinical trials. This would speed up the possibility of clinical trials in the United States. In the meantime, clinical trials are being started all over the world. Even though Dr. Huang's experience may not have convinced everybody that olfactory ensheathing glia are producing significant functional return, his work has blazed the trail for cell transplantation therapy. The method that he developed of injecting the cells into the spinal cord surrounding the injury site appears to be quite safe in patients ranging from age 2 to 64. It has established the feasibility of doing combination cell transplants into human spinal cord. Now, we have to start combining cell transplants and other therapies to see if we can improve on the results.

    Wise.

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