【今天有空，把一些过去的Email掏出来，留个底。让大家了解一下创新不是一件容易的事，了解一下要说服很少有中国人劣根性和中国酱缸文化的美国学者们，也是多么不容易的一件事。不是学医的网友也许知道RNA的故事。】

根据对中国酱缸文化的理解和既定方针，深知在中国作一万例不如在美国作10例的效果，经非常人能理解的努力，终于在2005年底06年初启动在美国的临床研究。十几个病人一作完，我长舒一口气：大功告成，以后只需等结果出来全世界跟进就行了。可是，too young, too simple.

除了国内外方狗们和不良记者们的骚扰污蔑，国外学者们有时墨守成规的刻板度和他们的严谨度以及对新事物的敏锐度成正比。下面的这些Email也许可以说明点问题。

出于对美国合作研究者的尊重以及保持第三方的客观性，手术做完我就基本不闻不问，让他们按他们的计划进行。在术后快2年，结果应该非常好了时，我在AUA会上碰到美国团队几位成员，谈起来结果完全不是那么回事！我大吃一惊，反复细问，才发现原因：是仍然在按标准指南应用神经阻断剂和导尿！我非常恼火，责问这是显而易见的神经学错误，为什么不撤？他们还是犹豫，因为若不按标准治疗，病人若起诉肯定麻烦大，而且病人手术后都回各自城市，由当地医生治疗，当地医生并不懂，要求他们不用也不会同意。但团队中一位住院总Faber医生支持我的意见，提出不用神经阻断剂等等是肖氏手术的一部分，我们可以根据知情同意书通知当地医生和病人撤除。后来一停药，一个月后9个病人7个就不需导尿自己排尿了。

红色文字是我反复试图说服美方负责人的Email

>>> "Xiao, Chuan-Guo" <Chuan-Guo.Xiao@nyumc.org> 2/13/2009 6:44 AM >>>
Ken，
I have been thinking about the cases in Beaumont, The results as you mentioned are really not good to me..Before I talk about the possible causes, I want to tell you how I deal with Kelly, the Louisana girl. I remote controlled all her treatment after the surgery.

1, Stopped detropen exactly 2 months after surgery.(She was operated on Oct. 8, 2008.) Wear diaper, DON'T care leaking or not.

2 ,Stopped regular catherterization since the 3 months after surgery(Jan.8.2009), Just once before going to bed. Then, she got one mild UTI but no change on catheraization. Ask the girl to try to void, by pushing or whatever ways.
3, Now, it is just more than 4 months after surgery, she seems to have got it.

In China, none of the patients has ever used Detropen before or after surgery; None of them has had any formal medical management of bladder and bowel, like regular catherizaton or so on after the surgery. But, 80-86% of more than 1300 kids gained continence and voluntary voiding.
So, my opinion is: You guys take care of these kids very good,TOO GOOD to let the bladder and the new reflex and the brain to have chances to communicate with each other. You Doctors are always on control instead of allowing the brain to takeover the control. Why the bowel function improvement is better than bladder? Doctors did not take care of the bowel as good as the bladder.

Then, my suggestion is: immediately stop cathertrization on all the kids underwent the surgery, just ask them to try to void, and  wear diaper! (especially Bill, the boy on the News.) Then let's see what will happen in a month before you go to Orlando. As I always say, spina bifida kids do not need to scratch the leg to initiate the reflex for voiding, including Natasha. They should be able to void voluntarily.

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>>> "Xiao, Chuan-Guo" <Chuan-Guo.Xiao@nyumc.org> 2/17/2009 10:43 PM >>>

Ken,

I am forwarding the email to you to support my point. If it were you, you most possibly would keep using Detropen and cathing her because she has a 200cc residual. The fact is: the residual will decrease every day if we let the brain to take control.

So, please order those kids to stop Detropen and catherization. OK, my compromise: you can let them cath once per day just before going to bed.

CG
&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&绿色文字的是病人父母给我的Email，这是个6岁女孩，枪伤导致脊髓损伤大小便失禁，做过4次脊髓手术无效。我去指导当地神经外科和泌外医生手术后，继续遥控指导术后治疗，5个月痊愈。SCI, Gunshot 6 yrs. No control of bladder and bowel,

Operated on Oct 8, 2008
From: Barry Gerald [mailto:bcgerald@bellsouth.net]

You won't believe this!! Okay you probably will.....Kelly wore panties to school today.  All day.  No accidents or leaks.  She is feeling the urge to go to the bathroom.  Tonight she voided on her own then she catherized almost 200 cc.  We are so proud of her and she is so proud of herself.  I will keep you updated.  Is there anything else we need to do?  I can never say thank you enough, but I have to keep saying it. Thank you！

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Feb, 17, 2009
Okay everyone….Kelly asked me today to buy her some panties so she could
wear them at home. We went to the store and she picked them out. She
has had the same pair on for 2 hours now and they are not wet. She has
been to bathroom to void 4 times so far. She says that it feels like a
tickle in her tummy. I am crying and so thankful once again to God and
for both of you! She is so proud of herself. I just had to share this with both of you.

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llMarch 1, 2009：
Kelly is now beginning to have some very consistent success. She has been wearing panties all week. Everywhere we go to school, play practice, etc... and she has not had an accident. Also it seems her ability to "hold it" is improving, so if a bathroom is not close by she can wait a tiny bit until we find one. I asked her what she thought the difference is and she said that she is feeling it more. She also looked at me with those blue eyes and that freckled face and said "Mom, wishes really do come true!" Once again, I cried.

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紫色文字是撤掉神经源性膀胱治疗指南规定的神经阻断和导尿一个月后，所有好结果都出来了。连我们术前术后都认为很难成功的三个病人（神经完全缺损，不得已嫁接神经近10厘米）一个完全成功，一个也获得了大便功能。

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Dr. Xiao,
    Natasha was in today, if you recall she was the one on crutches with a nerve graft done Left L2 to S2
    Baseline she was severely incontinent of urine between caths, severe constipation and incontinent of stool
    She is now totally continent of stool and urine, senses her bladder full, senses her catheter going in and beginning to void on own
    Urodynamics today demonstrated a stable bladder, normal sensation and an excellent reflex with stimulating the L4  Dermatome Bilaterally!! She voided to completion and we have great video of her bladder neck opening and the bladder emptying.
    She is the second patient to have Bilateral reflex and both were high anastamoses (L2). Must be where the nerves cross.
I would consider Natasha a home run which is shocking!        Thought I would let you know.
Kenneth M. Peters, M.D.

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2 years after the surgery. Our daughter basically relearned how to walk through much physical therapy and coaching from my husband and me. But it took about a year to a year and a half to get her back to her walking baseline. She has not achieved bladder continence from the surgery, but is nearly bowel continent now. We credit the surgery (and much prayer!) for the positive changes in her bowel function. Given what we know now, even with the extremely difficult recovery, we would do it all again to get the results that we did. The staff at Beaumont seemed genuinely disappointed that our daughter was not one of their "home runs" (their term, meaning complete bowel and bladder continence achieved as a result of the surgery)..... but she could have been. At least a few of the patients from her round of 8 surgeries WERE home runs, so this surgery is far from a hoax. We would do it all again for the chance of our daughter to achieve bowel and bladder continence! This surgery has significantly improved the quality of our daughter's life!

【把前面那篇文章撤掉转贴这儿存档】

丹麦的肖氏手术１年半结果和德国结果基本一致