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Thread: Unfettered by regulation, India pulls ahead on stem cell treatments

  1. #11
    Quote Originally Posted by Shwetarose View Post
    My father gave one reference of Mr.Pravin, quadraplegic from 13 years chronic injury. he recently took Dr. Sunil waghmare stem cell therapy. Doctor is situated in bombay itself.

    I had talk with Mr.Pravin and he told that he got improvement in bowel and bladder with just 10 days stemcell therapy.

    I got the number of the doctor and i m going to visit him soon and also get in touch with patients treated.

    Dr. Wise Young, Do u know the doctor in any case? i googled and found some articles and post of doctor. He is practising interventional radiologist and stem cell therapist. link
    Shweta, I am sorry but I don't know the doctor in Bombay. Wise.

  2. #12
    Junior Member roadreck's Avatar
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    looking for a response

    Quote Originally Posted by Wise Young View Post
    Buck, I hope that most people would think that I am relatively open-minded and will consider therapies that most doctors would simply dismiss. I tried hard to remain open-minded about Geeta Shroff. To me, the question is not whether there is one or two patients who have shown some recovery from the treatment. There will always be some patient who will show miraculous therapies, if you treat enough people. This is well known from the laying on of hands and other "miracles" that have been perpetrated on people. The placebo effect is very strong.

    Neurological symptoms from Lyme's disease often recover after a period of time. Until recently, I was not a believer of placebo effects in spinal cord injury until we saw it in the clinical trials of fampridine. The control group showed significant placebo effects. So, lest anybody claim that there is no such thing as placebo in spinal cord injury, I think that it is not true, particularly for people who are incomplete.

    To me, Geeta Shroff lost all credibility with me when it became clear that she does not follow up on the patients, does not document their recovery over the long term, and does not do tests on the patients to show that the treatments work as she claims. She is injecting the cells intramuscularly (something that would guarantee the death of the cells that are being injected, by the way), charging people $500 a shot.

    Wise.
    Dr. Young,
    I have a couple of concerns for which I would very much appreciate your response. I am the parent of a son who sustained a C5 complete injury about 16 months ago. We are here at Nu Tech in Delhi, after much research, inquiry and hand wringing. We have been here for 5 weeks and will continue for the duration of three months. So far, we are cautiously pleased with the results. He has new sustained volitional movement in his thumbs, and new found twitching in his forefingers. His breathing has improved significantly, and has seen small activity in his toes, ankles and calf. We have come from a year of significant physical therapy and exercise through our local facilities(Gillette, Sister Kenney and Courage Center) and extended trips to Project Walk and Quest to Walk. In spite of the hard work and effort, his functional recovery reached a plateau around February of this past year. It was around this time that I began to read whatever research material I could un-earth with my keyboard.
    All my reading and inquiry has led me to one, I think defensible conclusion. Stem cells are effective in repairing the damage of injured spinal cords to varying degrees. This comes from published research from Tehran to Toronto, you included. This led us to the next step, which was the decision to wait, or act. That was the hand wringing portion of the process, which was in no way helped by the poor conditions in our own country concerning a real treatment option for a chronic patient, coupled by some researchers suggestion that treatment as close as possible to the time of injury would be most effective. Obviously, we decided to act, which led us to the next decision, where. I read many forums and reports involving China, Latin America, Portugal, Germany and others. It was the contact with several sci individuals who were treated here and their encouraging results that answered the where question. The most significant was a gentleman we met personally from Kansas with the same level of injury as my son. He gained significant improvement at the level of injury and two stages below. This confirmed the decision to be worth a shot, so to speak. And here we are… now for my concerns.
    The first is regarding the ethics. You have responded to questions regarding Shroff, describing her treatments as unethical. I’m concerned with this somewhat broad swipe of an invocation. If the results are to my son’s even modest benefit and his consequent happiness, this passes the first test of utilitarian benefit. If she is doing no harm, which I have yet to witness or hear directly then again she passes the test. Of course medicine everywhere is always playing catch with this one. I have worked in healthcare for over 20 years, and have seen harm done on many occasions for many reasons, though seemingly meeting an acceptable threshold. She is also getting paid, as I assume all researchers are in this field. If you or another researching is being paid to perform human trials, why should Shroff not get paid what is necessary to sustain her efforts, especially if those efforts are providing some benefit. My concern over this persistent criticism around ethics comes principally from my disgust with the adulterous and very profitable bed that providers, pharmaceutical corporations and politicians share in the U.S. I am too well aware of the self- righteous hubris that’s in the water I’ve been drinking my entire life, and frames the world that I see. It has been a very difficult but worthy process to face my own arrogance throughout this difficult decision process. I am wondering how you remedy this, and assume that given the limitations placed upon your own valuable research, you must share some similar frustrations….the Bush administration notwithstanding (the ridiculous, ‘bait ‘n switch’ grandstanding of ‘snow-flake babies’, Sen. Brownbeck’s kindergarten classes before the House, et. al).
    My second concern is over the seemingly dismissive comment regarding the placebo effect. While I do not dispute the very real and profound power of the mind over the body it inhabits, I frankly and respectfully think that dismissing any claims from this institution, or its patient’s as a mass placebo effect strikes me as intellectually lazy. I must confess that I do not know to what degree you have endeavored to pursue Shroff, or even what direct knowledge you have of her work, so I cannot assume. If you haven’t, then I consider your suspect comments somewhat suspect.
    Thirdly, you say that she lost credibility when it became clear that she does not follow up on her patients, or perform tests… what evidence led you to become ‘clear’? I ask because I have met many patients who have been followed, and tested during multiple trips to this clinic. Repeat MRI’s, Scans and PT assessments seem to be commonplace around here and are given to patients who return to their primary physicians with scan in hand. You also mentioned the IM injections, which I must say were a little confusing to me, as I couldn’t understand the benefit. Shroff and Ashish’s response to my query regarding the IM injections was their belief that the stem cells act as a primer to areas which have atrophied, a primer for the more invasive procedures of Caudal, Epidural injections, Epidural catheter (with multiple injections) using neuronal and hematopoietic nudged cells. Your comments about the IM injections, and their relative cost (which I’m not sure where you arrived at that $500 a shot figure) were as misleading and even cavalier, as what you were suggesting was misleading. I sincerely mean no disrespect, but would appreciate and honest reply.
    Given the implications that potentially successful stem cell treatments could bring to the planet, I understand her reticence to embrace those who pre-judge. There are profound cultural, ethical, proprietary, financial and political factors that could easily stunt the growth of this new practiced science, of which you must be painfully aware. Therefore it would seem open hands, albeit cautious would be more appropriate and efficacious than finger pointing and conjecture.
    I have seen, in our short time here some significant gains made by many patients who have traveled farther, paid more, and fought harder than they should in order to be as well as is possible. It makes some of the posts on the Care Cure forum somewhat distasteful, seemingly fearful and narrow. Please remember my words spring from one who has been navigating through some difficult terrain, without much of a map.
    Thank you for your consideration.

  3. #13
    Thank you for taking the time to post these thoughts. It takes a lot of courage to do what you are doing. I sincerely hope for the best outcomes for your son.
    ______
    Awe at my magnificent coq!

    "You may say I'm a dreamer
    but I'm not" - J. Lennon

  4. #14
    Quote Originally Posted by roadreck View Post
    Dr. Young,
    I have a couple of concerns for which I would very much appreciate your response. I am the parent of a son who sustained a C5 complete injury about 16 months ago. We are here at Nu Tech in Delhi, after much research, inquiry and hand wringing. We have been here for 5 weeks and will continue for the duration of three months. So far, we are cautiously pleased with the results. He has new sustained volitional movement in his thumbs, and new found twitching in his forefingers. His breathing has improved significantly, and has seen small activity in his toes, ankles and calf. We have come from a year of significant physical therapy and exercise through our local facilities(Gillette, Sister Kenney and Courage Center) and extended trips to Project Walk and Quest to Walk. In spite of the hard work and effort, his functional recovery reached a plateau around February of this past year. It was around this time that I began to read whatever research material I could un-earth with my keyboard.
    All my reading and inquiry has led me to one, I think defensible conclusion. Stem cells are effective in repairing the damage of injured spinal cords to varying degrees. This comes from published research from Tehran to Toronto, you included. This led us to the next step, which was the decision to wait, or act. That was the hand wringing portion of the process, which was in no way helped by the poor conditions in our own country concerning a real treatment option for a chronic patient, coupled by some researchers suggestion that treatment as close as possible to the time of injury would be most effective. Obviously, we decided to act, which led us to the next decision, where. I read many forums and reports involving China, Latin America, Portugal, Germany and others. It was the contact with several sci individuals who were treated here and their encouraging results that answered the where question. The most significant was a gentleman we met personally from Kansas with the same level of injury as my son. He gained significant improvement at the level of injury and two stages below. This confirmed the decision to be worth a shot, so to speak. And here we are… now for my concerns.
    The first is regarding the ethics. You have responded to questions regarding Shroff, describing her treatments as unethical. I’m concerned with this somewhat broad swipe of an invocation. If the results are to my son’s even modest benefit and his consequent happiness, this passes the first test of utilitarian benefit. If she is doing no harm, which I have yet to witness or hear directly then again she passes the test. Of course medicine everywhere is always playing catch with this one. I have worked in healthcare for over 20 years, and have seen harm done on many occasions for many reasons, though seemingly meeting an acceptable threshold. She is also getting paid, as I assume all researchers are in this field. If you or another researching is being paid to perform human trials, why should Shroff not get paid what is necessary to sustain her efforts, especially if those efforts are providing some benefit. My concern over this persistent criticism around ethics comes principally from my disgust with the adulterous and very profitable bed that providers, pharmaceutical corporations and politicians share in the U.S. I am too well aware of the self- righteous hubris that’s in the water I’ve been drinking my entire life, and frames the world that I see. It has been a very difficult but worthy process to face my own arrogance throughout this difficult decision process. I am wondering how you remedy this, and assume that given the limitations placed upon your own valuable research, you must share some similar frustrations….the Bush administration notwithstanding (the ridiculous, ‘bait ‘n switch’ grandstanding of ‘snow-flake babies’, Sen. Brownbeck’s kindergarten classes before the House, et. al).
    My second concern is over the seemingly dismissive comment regarding the placebo effect. While I do not dispute the very real and profound power of the mind over the body it inhabits, I frankly and respectfully think that dismissing any claims from this institution, or its patient’s as a mass placebo effect strikes me as intellectually lazy. I must confess that I do not know to what degree you have endeavored to pursue Shroff, or even what direct knowledge you have of her work, so I cannot assume. If you haven’t, then I consider your suspect comments somewhat suspect.
    Thirdly, you say that she lost credibility when it became clear that she does not follow up on her patients, or perform tests… what evidence led you to become ‘clear’? I ask because I have met many patients who have been followed, and tested during multiple trips to this clinic. Repeat MRI’s, Scans and PT assessments seem to be commonplace around here and are given to patients who return to their primary physicians with scan in hand. You also mentioned the IM injections, which I must say were a little confusing to me, as I couldn’t understand the benefit. Shroff and Ashish’s response to my query regarding the IM injections was their belief that the stem cells act as a primer to areas which have atrophied, a primer for the more invasive procedures of Caudal, Epidural injections, Epidural catheter (with multiple injections) using neuronal and hematopoietic nudged cells. Your comments about the IM injections, and their relative cost (which I’m not sure where you arrived at that $500 a shot figure) were as misleading and even cavalier, as what you were suggesting was misleading. I sincerely mean no disrespect, but would appreciate and honest reply.
    Given the implications that potentially successful stem cell treatments could bring to the planet, I understand her reticence to embrace those who pre-judge. There are profound cultural, ethical, proprietary, financial and political factors that could easily stunt the growth of this new practiced science, of which you must be painfully aware. Therefore it would seem open hands, albeit cautious would be more appropriate and efficacious than finger pointing and conjecture.
    I have seen, in our short time here some significant gains made by many patients who have traveled farther, paid more, and fought harder than they should in order to be as well as is possible. It makes some of the posts on the Care Cure forum somewhat distasteful, seemingly fearful and narrow. Please remember my words spring from one who has been navigating through some difficult terrain, without much of a map.
    Thank you for your consideration.
    roadreck,

    Thank you so much for your very thoughtful and long post. I appreciate your thoughts and do not want to do anything to discourage you or your son. I also hope very much for his continued recovery. Therefore, I don't want to argue for or against the safety and efficacy of the therapy that your son is now receiving. Let me, however, address the issues relating to clinical trials and conflict of interest.

    Without first hand experience, I can only rely on press and other reports of Geeta Shroff's work. From press reports, posts by people on this forum, and also interviews of several people that received therapy from Geeta Shroff, the following have been clear:
    • Geeta Shroff is not doing a clinical trial. She is delivering a therapy that she claims will cure people and that is safe. I don't believe that what she is doing has been approved by any regulatory agency.
    • She is making claims of efficacy and safety without publishing any data to support the claims, without having a regulatory agency review the data, and without obtaining assessment of the data by other doctors.
    • She charges exorbitant amounts for the therapy. I estimated $500/injection because one person that I know spent $82,000 for 3 months of therapy and had about 160 injections. Please correct me if I am wrong.

    I do not trust what Geeta Shroff says about the therapy because she has a serious conflict of interest. Not only is this cell transplantation "her therapy" but she has a financial conflict of interest because she charges patients large amounts for the therapy. I assume that her clinic is financially dependent on the income from the therapy. She therefore has strong motivation to say that the therapy is safe and effective, even if it is not. Unfortunately, we will probably never know whether the therapy is effective or not. Because of the way she is handling the situation, she is unlikely ever to achieve the trust of the medical community in India or around the world. This is sad because, if her therapy is safe and effective as she claimed, it could be used to reduce suffering and save the lives of millions of people. At best, she can perhaps treat another 10,000 people in her lifetime.

    You suggest that I receive payment for my research and that Geeta Shroff does also. I respectfully suggest that the situations are not comparable. The clinical trials that I organize do not charge patients for the treatments or participation in the trials. Yes, I receive a salary as a tenured and endowed professor at Rutgers University for my teaching and research. I do not receive any payment for any of the clinical trials or networks that I organize, from any of the companies that contribute therapies for the trials, or from any of many spinal-injured people and families who participate in the trials or ask me for my opinions. I volunteer my time and effort for organizing the clinical trials. I pay for my own expenses, including my travel, lodging, food, and communication costs associated with all my work for the clinical trials. In addition, I personally donate substantial amounts (more than $10,000) every year to support the research and the clinical trials. While we are asking people to support the clinical trials by donating $1 a day to the http://JustADollarPlease.Org, the funds go to Rutgers University where they are used solely to support the activities of the SCINetUSA.

    You may want to ask why I am so careful. I am a director of ChinaSCINet and SCINetUSA, with responsibilities for helping shape decisions on what therapies will be tested in the trials, I want to avoid any possible conflict of interest. So, for example, I do not own stock or receive any payments from Stemcyte, the company that is contributing umbilical cord blood cells for the trials. I give them advice for free, like I do here on CareCure. They may choose to heed my advice or even claim that I am their advisor, but they don't pay me for the advice. Whether the therapy works or does not work in the trial, I can recommend for or against the therapy without conflict of interest. My interest is solely to find therapies that are safe and effective. I will not be making money from any of the treatments that will be tested in the trials. I do not depend on the clinical trial funding for my laboratory research. All this is because I want to be credible when we present the results of our clinical trial.

    The goal of clinical trials is to demonstrate safety and efficacy so that many doctors will apply the therapies to many people.

    Wise.
    Last edited by Wise Young; 10-17-2009 at 11:10 AM.

  5. #15
    Greetings,

    These posts are excellent and answering a lot of questions. Roadreck, thanks for the personal experiences, I hope your son continues to keep rocking.
    When I was first injured in July of 2008, I seriously considered pursuing Dr. Shroff's treatment. After communicating with Dr. Shroff herself, my friends & family, researchers here in The States, doctors, my neuroscience professors, etc... it became clear, to me, that I should not go.
    I still follow some of her patients' blogs, and always read threads about her here. A few months ago, the patient listed some general facts about the treatment, as told to her, by Dr. Shroff. Some of these facts contradict what I have learned about how hESCs could work in a human treatment. Here are some of the highlights:

    -Out of 150 x SCI patients suffering from a complete SCI, over a period of 1,000 days of human embryonic stem cell treatment, all patients showed 66% improvement.

    -No blood matching is required for patients undergoing hESC treatment.

    -hESCs are basically “repair” cells. Wherever there is an infection in the body a chemical messenger is secreted signaling infection. When injected into the blood stream, Dr. Shroff’s pre-differentiated hESCs have the capability to home into those cells in the body that need repair.

    -With very progressive diseases such as ALS/MND, Parkinsonism, MS, MD etc., the goal is to stabilize the disease. In order to keep the progressive disease stable, administering hESCs will be required for the rest of the patient’s life.

    -Generally speaking, the older the patient, the more hESCs are needed and the more visits required.

    -Females respond faster to hESC treatment (due to their hormones).

    -Most patients at Nu Tech Mediworld receive one of two pre-differentiated stem lines:
    -Haemopoietic stem line (promoting the formation of blood cells)

    -Neuronal stem line (neuron: specialized cells of the nervous system)

    Dr. Young, could you should shed some of your wisdom regarding these bits of limited information? For instance, if one had more than one line of hESCs, would one need more than one embryo to create multiple lines? Another questions is, what good would injecting pre-differentiated neuronal stem cells intramuscularly into the arm do?




    fact source: http://amandaboxtel.wordpress.com/20...ech-mediworld/
    Last edited by captainwelch; 10-17-2009 at 01:16 PM. Reason: spelling fix

  6. #16
    Junior Member roadreck's Avatar
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    Dr Young,
    Thank you for your thoughtful and delicate response. Let me start by apologizing for any suggestion that your credibility is in question, this was not my intention. The forum alone has given me a high regard for your character, and hence the willingness to seek your counsel as well as question some of your specific comments. I commend you for your careful designs on the research with its potential encumbrances. Though it was not necessary to explain the nuances of your vital work, I am thankful for your articulation and the explanations were helpful. I now recognize that one fault of my original post was to compare Shroff’s work with any other researcher’s. I know that she is not conducting a trial but rather providing treatment. Its then the consideration of a premature treatment, that is in question. While I recognize that anyone in search of treatment weighs benefits and risks, from a root canal to a triple bypass, we do have some comfort in the systems, which regulate safety. Having said that, I believe there to be an inherent conflict of interest in the practice of medicine, specifically as it pertains to procedures and pharmaceuticals. Physicians must maintain a high degree of integrity based upon their fee structures and compensatory relationships with health care systems, providers and pharmaceuticals. My confidence in our healthcare system was as much shaken as it was strengthened this past 15 months. Were it not for my years of work within that system there may have been more shaken than confirmed. Suffice to say it is that, in part, which is a derivative of why we are here. At a certain point one must hand their trust to a practitioner in the hopes that their acumen, and claims are valid. For us, this willingness came after repeated correspondence with Shroff via email and phone, and as mentioned earlier in the face to face conversations with previous patients…not at all unlike the word of mouth endorsements of physicians at home.
    Let me clarify a couple of things:
    • I recognize that Shroff is not performing clinical trials. She is offering treatment, which should in my opinion be available in the US.
    • While I understand her reticence to publish, I also understand that it is her intention to do so. I would certainly feel more confident if there was reviewed data and an external body confirming the treatment offered. She does have a governing board, but I know from personal experience that does not ensure impartiality. I do believe that if she has found a technology that works, at some point she is duty bound to open the doors for review and export. The few physicians who have visited this clinic from the west, who had positive findings, encouraged me. It has been a while since I read their reviews or I would give their names to you now. I recall one who was sent here by the ministry of Health from Iceland. It was a cursory report, but it was nonetheless encouraging.
    • I do not know who the person you interviewed was, but find it difficult to believe that the cost of treatment was $82K. The cost of treatment is approximately $16K per month to include; room, food, twice a day PT (5 days/wk, and one session on Saturdays), 24/7 nursing and physician presence. There are some additional costs for imaging studies, and medication as necessary, but at this point in our stay, I don’t expect to exceed an additional $5K for the entire 3 months (travel included). Given that Gabriel’s 3 month stay in a rehab hospital was in excess of $600K, I don’t think the costs are exorbitant.
    • Each patient is given somewhere between 6 and 9 procedures throughout their stay, in addition to the daily injections based upon their progress and particular disease/injury. The physicians, nurses and Physical therapists follow closely (relative to the diligence of each, as anywhere) any new activity or changes, and it is this that informs as to the next and most appropriate procedure to follow.

    I do not know if this is new information for you, or if it is of any benefit. We continue to be hopeful for any additional benefit, to which my son has already received some…even in the last few days, he is seeing some return in his Pec major on the right side during my additional exercises with him. If we were to see some recovery at one stage below injury, I believe that would constitute a worthy investment.
    If you would indulge one last question, I would ask this; what is the responsibility of a physician across national borders to follow a patient’s progress? Is there a standard of practice and does it or does it not follow the same sop for any practicing physician in the states?...The hand off from one to another, which in my experience is not always as fluid as I would expect?
    Thank you again for your consideration


    Quote Originally Posted by Wise Young View Post
    roadreck,

    Thank you so much for your very thoughtful and long post. I appreciate your thoughts and do not want to do anything to discourage you or your son. I also hope very much for his continued recovery. Therefore, I don't want to argue for or against the safety and efficacy of the therapy that your son is now receiving. Let me, however, address the issues relating to clinical trials and conflict of interest.

    Without first hand experience, I can only rely on press and other reports of Geeta Shroff's work. From press reports, posts by people on this forum, and also interviews of several people that received therapy from Geeta Shroff, the following have been clear:
    • Geeta Shroff is not doing a clinical trial. She is delivering a therapy that she claims will cure people and that is safe. I don't believe that what she is doing has been approved by any regulatory agency.
    • She is making claims of efficacy and safety without publishing any data to support the claims, without having a regulatory agency review the data, and without obtaining assessment of the data by other doctors.
    • She charges exorbitant amounts for the therapy. I estimated $500/injection because one person that I know spent $82,000 for 3 months of therapy and had about 160 injections. Please correct me if I am wrong.

    I do not trust what Geeta Shroff says about the therapy because she has a serious conflict of interest. Not only is this cell transplantation "her therapy" but she has a financial conflict of interest because she charges patients large amounts for the therapy. I assume that her clinic is financially dependent on the income from the therapy. She therefore has strong motivation to say that the therapy is safe and effective, even if it is not. Unfortunately, we will probably never know whether the therapy is effective or not. Because of the way she is handling the situation, she is unlikely ever to achieve the trust of the medical community in India or around the world. This is sad because, if her therapy is safe and effective as she claimed, it could be used to reduce suffering and save the lives of millions of people. At best, she can perhaps treat another 10,000 people in her lifetime.

    You suggest that I receive payment for my research and that Geeta Shroff does also. I respectfully suggest that the situations are not comparable. The clinical trials that I organize do not charge patients for the treatments or participation in the trials. Yes, I receive a salary as a tenured and endowed professor at Rutgers University for my teaching and research. I do not receive any payment for any of the clinical trials or networks that I organize, from any of the companies that contribute therapies for the trials, or from any of many spinal-injured people and families who participate in the trials or ask me for my opinions. I volunteer my time and effort for organizing the clinical trials. I pay for my own expenses, including my travel, lodging, food, and communication costs associated with all my work for the clinical trials. In addition, I personally donate substantial amounts (more than $10,000) every year to support the research and the clinical trials. While we are asking people to support the clinical trials by donating $1 a day to the http://JustADollarPlease.Org, the funds go to Rutgers University where they are used solely to support the activities of the SCINetUSA.

    You may want to ask why I am so careful. I am a director of ChinaSCINet and SCINetUSA, with responsibilities for helping shape decisions on what therapies will be tested in the trials, I want to avoid any possible conflict of interest. So, for example, I do not own stock or receive any payments from Stemcyte, the company that is contributing umbilical cord blood cells for the trials. I give them advice for free, like I do here on CareCure. They may choose to heed my advice or even claim that I am their advisor, but they don't pay me for the advice. Whether the therapy works or does not work in the trial, I can recommend for or against the therapy without conflict of interest. My interest is solely to find therapies that are safe and effective. I will not be making money from any of the treatments that will be tested in the trials. I do not depend on the clinical trial funding for my laboratory research. All this is because I want to be credible when we present the results of our clinical trial.

    The goal of clinical trials is to demonstrate safety and efficacy so that many doctors will apply the therapies to many people.

    Wise.

  7. #17
    Senior Member Leo's Avatar
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    Hi roadreck,

    Sorry about your son.

    I believe I've read statements from a couple previous patients that they are told that it takes 3 or 4 months to see the full results of an injection of cells.

    Were you told this or have you heard it from patients u talk to?

    TIA
    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."

  8. #18
    Junior Member roadreck's Avatar
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    Quote Originally Posted by Leo View Post
    Hi roadreck,

    Sorry about your son.

    I believe I've read statements from a couple previous patients that they are told that it takes 3 or 4 months to see the full results of an injection of cells.

    Were you told this or have you heard it from patients u talk to?

    TIA
    Leo,
    I have seen the whole spectrum here. My son had movement back in his right hand (primarily thumb extension and some wrist deviation) within the first two weeks. He has also seen some modest improvements since then... pec and tricep (ability to hold a press for about 5 to 8 seconds...had nothing prior to tx) , improvement in breathing, and ability to push urine. I've met a few folks who saw more improvement after they returned home (here for second and third time), but most everyone I've met so far (upwards of 20 or so) have had some improvement. There is one gentleman who's still waiting to see something after 6 weeks. The SCI folks here range from 4 months post injury to 20 plus years. As you can imagine there is a strong sense of community and camaraderie here, and everyone is keenly attuned and interested in the changes that are happening.
    The clinic folks do suggest to the patients that it takes time, and they need to focus on PT/Exercise because they should expect to see improvement after they have returned home.
    Thanks for asking

  9. #19
    Man.. Those improvements are pretty big. A number of people I talked to say there is some Improvement after a treatment but they contribute it to spending 20-40 thousand dollars and therefore must have something to account for. Do you believe your son will have functional improvements after this is done? You said he has the ability to push urine? Does that mean he can start or stop voiding? TYI also I wish you guys the best!
    Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
    CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

  10. #20
    What kind of person profits from the pain of others. how can you call yourself a doctor and give useless treatment for thousands of dollars. If there was even the slightest bit of truth to any of this she would win the Nobel peace prize. Her actions are reprehensible, criminal, and she should be given the same treatment as they would in China. Execution. I'm sorry if these words are harsh. But with our short life Spans as spinal cord injury survivors, exploiting us is unconscionable.

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