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Thread: Dr. Young, quick question about Dr. Xiao´s procedure

  1. #1

    Dr. Young, quick question about Dr. Xiao´s procedure

    Wow, reading the Xiao thread gives me the feeling of excitement as if maybe something good will happen soon to help all of us in a functional and practical way. The thread goes on and on and on and you and other scientists members are seemingly going along with what is claimed and no one here has taken an active stance against these claims or the procedure (other than the acrimonious situation I won´t go into here).

    That is the opposite position than what has been adopted toward other scientists and doctors all over the world claiming to have the "cure" for an expensive charge where the position here has been generally that the claims have little or no scientific weight and need further documentation, pretty much snake oil, like the upcoming TV program will attest. This lends much needed credibility to Dr. Xiao´s claims in my view.

    Now, if all it takes is 20,000 and a trip to Shanghai or elsewhere to have an 80% chance of getting bowel, bladder and maybe even sex back, I am ready, as I am sure many of us here are.

    The question is, is the procedure ready for us? What is that 80% success rate referring to? How exactly is success defined?

    Do we hop on a plane and go for it? Do we wait? Specifically wait for what? What is your opinion on many here getting in line to get the procedure done now?

    Thanks for all your wonderful input and always wish you the very best.
    T6 complete (or so I think), SCI since September 21, 2003

  2. #2
    Quote Originally Posted by paramoto View Post
    Wow, reading the Xiao thread gives me the feeling of excitement as if maybe something good will happen soon to help all of us in a functional and practical way. The thread goes on and on and on and you and other scientists members are seemingly going along with what is claimed and no one here has taken an active stance against these claims or the procedure (other than the acrimonious situation I won´t go into here).

    That is the opposite position than what has been adopted toward other scientists and doctors all over the world claiming to have the "cure" for an expensive charge where the position here has been generally that the claims have little or no scientific weight and need further documentation, pretty much snake oil, like the upcoming TV program will attest. This lends much needed credibility to Dr. Xiao´s claims in my view.

    Now, if all it takes is 20,000 and a trip to Shanghai or elsewhere to have an 80% chance of getting bowel, bladder and maybe even sex back, I am ready, as I am sure many of us here are.

    The question is, is the procedure ready for us? What is that 80% success rate referring to? How exactly is success defined?

    Do we hop on a plane and go for it? Do we wait? Specifically wait for what? What is your opinion on many here getting in line to get the procedure done now?

    Thanks for all your wonderful input and always wish you the very best.
    Paramoto,

    I met Dr. Xiao about five years ago (December 2005) when we invited him to speak that the first International Spinal Cord Injury Treatment and Trials Symposium. I was impressed by his presentation there and nothing that I have seen to date has changed my mind that his procedure has the potential to help many people. It is strange because he was actually at New York University Medical Center (where I taught for 20 years) in the 1990's but, because he was in a different department and perhaps I was oblivious, I wasn't aware of his work.

    Let me, however, provide some caveats. First, I haven't talked to his patients. One member of CareCure had the procedure done last year and I am not sure how much functional return he has gotten. So, most of what I know is from what Dr. Xiao himself has presented or published. Second, the mechanisms are credible although I still find it quite amazing that the transfer of a single ventral root to the pudendal nerve can get so much function. Third, to date, I don't think that Dr. Xiao has made many claims concerning sexual function and I think that more studies need to be done to assess anal sphincter function. Finally, other doctors are beginning to do the procedure and their results are not as good as Dr. Xiao. This may of course be because he is better and more experienced with the procedure.

    There are many questions that people have not asked him. For example, what is the range of "good results" in the 80% of patients that he believes is responding to the therapy. How many people can stop catheterization? I have heard Dr. Xiao say that some of his patients, particularly children with spina bifida, develop voluntary control of their bladder after the procedure. How often does this happen? Does it occur in 5%, 10%, 20%, etc. of the patients? What are some of the complications of the procedure. What are the worst risks, i.e. loss of function from the transferred root?

    I respect Dr. Xiao not only for his vision in developing this procedure but also because he has been quite frank in his discussions with both patients and colleagues.

    Wise.

  3. #3

    Wise, thanks for the answer.

    Quote Originally Posted by Wise Young View Post
    Paramoto,

    I met Dr. Xiao about five years ago (December 2005) when we invited him to speak that the first International Spinal Cord Injury Treatment and Trials Symposium. I was impressed by his presentation there and nothing that I have seen to date has changed my mind that his procedure has the potential to help many people. It is strange because he was actually at New York University Medical Center (where I taught for 20 years) in the 1990's but, because he was in a different department and perhaps I was oblivious, I wasn't aware of his work.

    Let me, however, provide some caveats. First, I haven't talked to his patients. One member of CareCure had the procedure done last year and I am not sure how much functional return he has gotten. So, most of what I know is from what Dr. Xiao himself has presented or published. Second, the mechanisms are credible although I still find it quite amazing that the transfer of a single ventral root to the pudendal nerve can get so much function. Third, to date, I don't think that Dr. Xiao has made many claims concerning sexual function and I think that more studies need to be done to assess anal sphincter function. Finally, other doctors are beginning to do the procedure and their results are not as good as Dr. Xiao. This may of course be because he is better and more experienced with the procedure.

    There are many questions that people have not asked him. For example, what is the range of "good results" in the 80% of patients that he believes is responding to the therapy. How many people can stop catheterization? I have heard Dr. Xiao say that some of his patients, particularly children with spina bifida, develop voluntary control of their bladder after the procedure. How often does this happen? Does it occur in 5%, 10%, 20%, etc. of the patients? What are some of the complications of the procedure. What are the worst risks, i.e. loss of function from the transferred root?

    I respect Dr. Xiao not only for his vision in developing this procedure but also because he has been quite frank in his discussions with both patients and colleagues.

    Wise.
    I really should have become a member earlier, just too busy:-) I have this weekend off to company my daughter for her preliminary school swim game, so I have time anwser more questions.

    Paramoto's concern is undrstandable and comes out just on time. I have been working on a more detailed Q&A with videos of different kind of SCI underwent Xiao Procedure. A very kind member of this forum is helping me to edit those videos and we are almost done. Now I want to add more to your anwser and questions:

    1, Some third party current SCI data
    a, I don't have contact information for 2 SCI I did at NYU. I think NYU has to pertect their privacy, but I will show the viedos with thier identity coverd.
    b, A luisanna Girl with gun shot SCI was cured and the hospital wrote some report about it, Wise may contact the Neurosurgeon to find out more details.
    http://content.yudu.com/Library/A15qm3/CNSNewsQtr12009/resources/8.htm
    c, Some groups not related to me are reporting their work with similar resultsone more in J.Neurosurgery:spine, but I can not find details)
    Reconstruction of reflex pathways to the atonic bladder after conus medullaris injury: preliminary clinical results.
    Lin H, Hou CL, Zhong G, Xie Q, Wang S.
    Microsurgery. 2008;28(6):429-35.
    Reconstructed bladder innervation below the level of spinal cord injury: the knee-tendon to bladder artificial reflex arc.
    Zheng XY, Hou CL, Zhong HB, Xu RS, Chen AM, Xu Z, Wang JH.
    J Spinal Cord Med. 2009;32(1):79-85

    2, Voluntary control after Xiao procedure:
    Most SCI patients can not, they have to initiate void by stimulating the new reflex, or by straining evoked detrusor contraction.
    Almost ALL Spina Bifida patients gained voluntary control. I have finished a fMRI study on 20 SB patients over 14 and the results are amazing: they had no micturition center before surgery, but new micturition center established as gaining the bladder control, teh new void center, however, is at different location compare to normal people. Wise, can you review and rewrite this paper for me? or can you find some person working at this field to look at it for me?

    3, What means 80% effective rate:
    The effective rate included cured and improved, Cured means cath free, infection free, no need for anticholineric (detropen)and residual urine volume less than 100 ml. If residual urine is more than 100 with reduced UTI, we classify it as improved.

    4, Complications of Xiao Procedure
    There is no complication for SCI generally, except very few incomplete cases with special condition that I have to use one third of a functioning L5 or S1. This will cause some weakness in related muscle for a few weeks or months, like Jaward, but will return to baseline. For Spina Bifida, a third or half of a functioning L5 or S1 has to be used, it will also cause related muscles some weakness for a few month in about 2/3 of the cases, but most will return to normal in 6-12 months. Otherwise, no other complications. I have done nearly 2000 cases in recent 3 years in not as good condition as in USA, but have no death, no introdual infection, or other problems. It is now a very mature and safe procedure. Dr. Peters, Prof. and Chairman, reported the 2 year results of Xiao Procedure at Beaumont Hospital, USA, a few months ago. They are carrying out the last and 3 year followup recently and the results are even better.
    http://www.glsuna.com/PetersGLSUNA2010.pdf

    Since the first trial results are very good, NIH awarded $2.3m recently for a multicenter trial of the Xiao Procedure.
    http://projectreporter.nih.gov/proje...fm?aid=7696321

    UK is starting Xiao procedure.
    http://www.xiaouk.com/

    Danmark, Finland, Austrialia, India, serbia, Phillipines, South Korea etc, are also doing or going to do Xiao Procedure.

    5, Lessons learned and concerns regarding SCI and Xiao Procedure
    The Xiao procedure was originally for SCI. Scientifically and surgically it should be much better for SCI than for SB ( SCI has normally developed bladder and normal neural anatomy. No further loss in SCI). But now I have no worry for SB patients and very confident for above 80% success, while have great concern on SCI patients in western contries who has been using CIC and anticholineric as gold standard and routing for almost 70 years. The problem is the detropen useage and then the unavoidable overextension of the bladder which will end in fibrosis of detrusor. In another words, even I can rewire the nerve for sure, the target organ is not working anymore. This would be the reason for the 4/6 failure in Germany: They did not do urodynamics before surgery, they never stoped using detropen even after surgery. I asked the doctor: if you don't know the bladder situation, if you keep using Detropen to paralyze the bladder, why did you do the Xiao Procedure?! this is not a issue in China because no SCI patients usig anticholineric. But for patients in USA and other western country I strongly advise them to check their bladder if it is DECOMPENSATED. If not, go ahead for the Xiao procedure and I am confident they will have good results. If the bladder has a capacity around 1000ml and can not recover to below 700ml after continue draining for 2 weeks, forgot the Xiao procedure and I have designed a new surgery for them:-) ( I will talk about the new surgery soon. I have performed the new surgery for 20 patients who either did not qualify for Xiao Procedure or failed the Xiao procedure. So, Wise, you can see: Technically speaking, I am able to let ALL SCI patients free of cath, detropen, UTI and renal damage:-), That's what I has focued on in recent 2 years and luckly solved the problem. Sounds a little bit bragging:-), but I am really very happy for those suffering SCI patients:at least I can make their life a little bit easier.

    Another big concern is that SCI patietns may not get regular post operative fellowup and training. For SB, the brain will take over after teh new reflex established, so postsurgery training is not a big concern. but for SCI patients, they have to learn or be trained to use the new reflex. For example: we all have knee jerk reflex, but how many of us know how to initate it? So, once the new reflex established, correct training on how to use the new reflex to initiate voiding is very very important. Idealy, all patients from USA should have a co-ordinator connected with urologist and rehab or special doctors to arrange them to have appropriate postsurgery followup and training. Just do the surgery and Bye Bye forever is not good for either the patient or me.
    Last edited by CG Xiao; 04-18-2010 at 04:05 AM.

  4. #4
    Thank you both very much for your detailed response, this site is amazing and your continued participation wlll make it more so Dr Xiao.

    Dr. Xiao, if I understand correctly you are saying that your patients void with the reflex 80% of the time, some completely and some with residual volume. Of the 80%, what are the percentages or distribution of each case?

    Also, you have discussed in great detail the procedure for the bladder. Can you discuss your experiences and functionality regarding the bowel? Success rate, success definition, can both procedures be done in the same operation?,etc.

    Most cc members think very highly of Dr. Young. Is it a crazy idea to suggest that he padticipate in one of your surgeries and write about his experience?

    Thank you both very much for taking the time to respond. Wise, may I suggest, if possible, that we leave this thread open for questions about the procedure in general, whereas the other Dr Xiao thread is more case by case specific. Thanks again.
    T6 complete (or so I think), SCI since September 21, 2003

  5. #5
    Cured/improved=2/1. Wise has already reviewed my papers which have more details if you go back to look.

    Bowel function is the best part of the procedure: As I reported in my paper: All who regained bladder function also restored bowel function. More specific: No constipation/continence, once per day or 2 days with normal shape. You do not need 2 seperate surgery: Xiao Procedure restore B&B function at once, because B&B are both innervated by same group neurons in pelvic ganglia. In fact, these information have also been provided in my papers.

    There should have not too many questions about the procedure itself. I will try to combine all Q&A supported by video or Picture to cover all kind of cases, so I do not need to anwser similar questions over and over.

  6. #6
    Senior Member MikeC's Avatar
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    Dr Xiao and Dr Young, thank you so much for your input to this subject. I've also been following the thread where Dr Xiao has been very forthcoming in describing his procedure and results and I appreciate that. But I share paramoto's concerns.

    Dr Xiao, maybe I just haven't read everything you've posted but has there been any study by an independent group on the results of your procedure? Dr Young has told us many times the need for unbiased clinical trials in determining the success (or failure) of any procedure. If there has been a clinical trial, please provide the link again (when I click on the links you gave below about a preliminary clinical trial I get an error message saying that 'Webpage cannot be found.") I assume there is a difference between a preliminary trial and a 'final' trial. This question is really whether a full trial has been done.

    Also, you say that follow-up with a urologist is required. Are urologists getting trained also? I agree that this would be required but I imagine that most urologists would not understand how to train the body to work after your procedure.

    Another question - I'm not sure you answered Dr Young's question about what the complications are and what are the worst risks? Is the worst risk the loss of function from the transferred root? If so, what is that loss? Is it the same for everyone - do you always use the same root or would it be different for someone like me with a T12 injury than for someone with a C level injury?

    Dr Young - what does it say about a procedure if the success rate is significantly less when performed by another surgeon? Obviously the skill of the person performing a procedure is important in the outcome but if there is a large difference it seems like that is an indication that the procedure needs to be refined. I'd appreciate your thoughts.

    Again, thanks to both of you for clarifying this issue for us.

    Mike
    T12 Incomplete - Walking with Crutches, Injured in Oct 2003

  7. #7
    Dr. Xiao, thank you for your continued posts regarding your nerve graft procedure on this forum. What is the normal recovery time from your surgery?
    Daniel

  8. #8
    Dr. Xiao, thank you so much for your comments. It clarified a great deal for me. I am attending meetings right now and do not have time to look up the information and comment. I will do so soon. Wise.

  9. #9

    Depends.

    Quote Originally Posted by dan_nc View Post
    Dr. Xiao, thank you for your continued posts regarding your nerve graft procedure on this forum. What is the normal recovery time from your surgery?
    Usually The L5 or S1 is used, that is the shortest distance for neural regeneration, which usually see improvment in 12 month. It T 11 or T12 has to be used in caude equana injury patients, it may take 18 months .

    Chindren are much faster, usually half the time.

  10. #10

    Mike, Please read my post and links given above

    All your questions are awnsered there:-)
    Since you are in Tampa, that give you a good chance: Dr Homsy is a professor of Urology of USF. He is leading a trial of Xiao procedure at All Children's Hospital.

    Quote Originally Posted by MikeC View Post
    Dr Xiao and Dr Young, thank you so much for your input to this subject. I've also been following the thread where Dr Xiao has been very forthcoming in describing his procedure and results and I appreciate that. But I share paramoto's concerns.

    Dr Xiao, maybe I just haven't read everything you've posted but has there been any study by an independent group on the results of your procedure? Dr Young has told us many times the need for unbiased clinical trials in determining the success (or failure) of any procedure. If there has been a clinical trial, please provide the link again (when I click on the links you gave below about a preliminary clinical trial I get an error message saying that 'Webpage cannot be found.") I assume there is a difference between a preliminary trial and a 'final' trial. This question is really whether a full trial has been done.

    Also, you say that follow-up with a urologist is required. Are urologists getting trained also? I agree that this would be required but I imagine that most urologists would not understand how to train the body to work after your procedure.

    Another question - I'm not sure you answered Dr Young's question about what the complications are and what are the worst risks? Is the worst risk the loss of function from the transferred root? If so, what is that loss? Is it the same for everyone - do you always use the same root or would it be different for someone like me with a T12 injury than for someone with a C level injury?

    Dr Young - what does it say about a procedure if the success rate is significantly less when performed by another surgeon? Obviously the skill of the person performing a procedure is important in the outcome but if there is a large difference it seems like that is an indication that the procedure needs to be refined. I'd appreciate your thoughts.

    Again, thanks to both of you for clarifying this issue for us.

    Mike
    Last edited by CG Xiao; 04-20-2010 at 11:12 PM.

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