The Story of First Patient of Xiao Procedure Trial at Beaumont Hospitals
By xysergroup | 3月 9, 2010
The following are the story of one of the first patients of the Xiao Procedure trial conducted at Beaumont Hospitals in December 2006, told by media reports, TV show, and mostly the patient and his mother’s web posts on the CareCure Forums. According to Beaumont, and indeed, ”the first procedure garnered national attention and appeared in more than 160 news outlets”.
For the situations of other SCI patients of the clinical trials outside China, please see the Open Letter against Xiao Procedure, or see Slide 80 of Xiao Chuanguo’s presentation at SIU 2009 and the report from St. Petersburg Times.
http://sci.rutgers.edu/forum/showthread.php?t=70481
10-09-2006, 05:09 PM #1
BeeBee
My son has been contacted by his urologist to participate in a study involving nerve rerouting to restore bladder function. Still vague on the details, only one phone call so far. Has anyone (Dr. Young???) had this done or have any information on it? Apparently the physician is from China, sorry I don’t know his name. Is this the same proceedure that is done in Europe for this purpose and (separately ) to restore facial innervation after injury?
10-11-2006, 09:35 AM #14
BeeBee
Dr. Chuan-Guo Xiao is the physician. Dr Young: do you have any information on him or his previous results?
10-12-2006, 08:10 AM #18
Wise Young
Administrator
BeeBee, Dr. Chuan-Guo Xiao is the surgeon who has been doing peripheral nerve rerouting for restoration of bladder function in Shanghai (Tongji University) and New York University Medical Center). His approach is different from the one taken by Dr. Shaochen Zhang who has been connecting nerves from above the injury site to the nerves of the bladder. Dr. Xiao’s approach has been to use nerves below the injury sit and then use the segmental reflexes of the spinal cord to activate the micturition (the pissing) reflex. He presented his work in the December ISCITT meeting in Hong Kong. He showed impressive video pictures of people who were able to micturate by stimulating the skin innervated by the spinal cord root that had been reconnected. Dr. Zhang’s approach is trying to restore voluntary micturition but I have not seen all the data and am uncertain that it works as well. In my opinion, a lot of work needs to be done to improve both procedures.
10-16-2006, 03:28 PM #19
BeeBee
The study group will be fowarding their information this week. Possible benefits are: return of bladder function, possible partial return of bowel function (control ability, not sensory) and possible possible sexual return.
Reletively “minor” surgery: a 2 day stay and couple more days at home. (No large incisions or hardware placement: that’s OUR definition of major surgery).
Dr Young: do you have links or copies of the published research?
11-30-2006, 02:15 PM #27
BeeBee
My son will have the surgery on Dec 21. Mike: actual expected results are within 2 years of the surgery. No idea on further trials.
They remove a small portion of the bone from L-5 and re-route a nerve to S-3. He should be able to feel when he needs to void, and actually void by scratching or pinching a place on the hip that will “trigger” the nerves to relax the muscles and allow the bladder to empty. No more caths
He will likely be making some type of presentation to the media inconjuction with this surgery.
12-30-2006, 11:15 AM #44
sexy wheel man
This is BeeBee’s son kevin, the one who had the surgury. i got home from the hospital the saturday after the procidure. it was a very minor surgury, i’ve had 8 before and this was by far the the easiest and fastest i’ve ever recovered from from a surgury. its going to take 15 months to know if it’ll work because the nerve grows at a milimeter per day, but i’ll keep everyone updated on how its going..
http://www.youtube.com/watch?v=1kzO5XJZ69o
http://www.foxnews.com/story/0,2933,237479,00.html
Nerve Surgery May Repair Bladder Problems
Tuesday, December 19, 2006
https://www.beaumonthospitals.com/research-institute-research-by-department-urology
Beaumont Hospitals’ Research by Department, Urology.
Beaumont Hospitals launched a research study to “rewire” nerves in the spinal cord in the hope of giving bladder control to people with spinal cord injury or spina bifida who otherwise depend on self-catheterization to urinate. The first procedure garnered national attention and appeared in more than 160 news outlets including U.S. News & World Report, The Washington Post and Forbes.
http://sci.rutgers.edu/forum/showthread.php?t=74610
12-19-2006, 02:49 PM #3
BeeBee
That’s my boy!
His surgery will be on Thursday. His will be a little different than originally planned. They will be rerouting a nerve from above his injury level, due significant perifrieal (sorry, this is spelled wrong and I don’t have time to check) nerver damage from the accident. It will, as a result, most likely take longer to heal (18 vs. 9 months), but will provide actual sensory control. They will also decompress his spinal cord and remove any scar tissue.
12-19-2006, 04:52 PM #6
Wise Young
BeeBee, thank you for posting the information. I spent several days with Dr. Chuan-Gao Xiao at the Fifth Asia-Pacific Neural Regeneration Symposium where he presented his latest results. He has now done several hundred patients, including children with spina bifida and people with chronic spinal cord injury. The patients that he did at NYU were in a clinical trial funded by NIH. About 80% of the people are able to urinate by stimulating the skin of the spinal cord segment whose ventral root has been re-routed to the nerves to the bladder. I am quite impressed by the procedure. Apparently, he will soon be publishing some additional changes in the procedure that improves the reliability of the method. Interestingly, he says that some patients also have improvement of their anal sphincter. However, there is not much information about sexual function. The most impressive cases were the children with spina bifida where they apparently not only recover bladder function but often regain voluntary control of their bladder.
12-28-2006, 04:08 PM #34
BeeBee
We went for our post-op follow up today. Removed the stitches. They’ve done 3, so far. All male, my son @ 19 2.5 years post, another Kevin, 49 and about 20 years post and a 6 year old Spinal Bifida patient. That all were male was a coincidence, not a specific choice or goal. They said my Kevin’s incision was healing the best. We think its because he’s had the most practice.:D
He is completely without pain, now. He’s had some fairly extreme pain in his lower back/upper hip since his third (I think) surgery, 2 years ago. This is gone. At least for now. His temperature also seems to be better regulated. He doesn’t sit in front of the fireplace while we sweat anymore. Hoping these changes last!!
Next follow-up will be in 3 weeks, at one month post. Then at 3 months. At 6 months he will have an extensive follow-up exam.
He was not taking any Ditropan, etc., before the surgery. But the other 2 patients were. They were asked to cut it by 1/3 a week prior to surgery, they will cut again in 3 months and completely stop at 6. Just FYI for you drug followers…:)
http://sci.rutgers.edu/forum/showthread.php?t=79794
04-10-2007, 04:52 PM #10
BeeBee
Posts: 593 Best of luck, Lynn. This is the trial my son’s participating in. Surgery was very easy, recovery fast. His latest appointment showed some promise. He’ s experiencing some leaking when he coughs or sneezes and that’s apparently a good sign. They just did the next series of trial surgeries, maybe a week ago. Most excellent!
http://www.tampabay.com/features/humaninterest/article984049.ece
Experimental surgery helps relieve kids with spina bifida and spinal injuries
By John Barry, Times Staff Writer
In Print: Sunday, March 15, 2009
The three with spinal cord injuries were not helped by the procedure.
http://sci.rutgers.edu/forum/showthread.php?t=118791
05-14-2009, 04:56 PM #1
BeeBee
Washington DC Self Catheters please help.
My son was visiting and will now have to stay for longer than expected. He has his script for his self caths, but we’re having a problem finding a local supplier. He uses Mentor 14fr straight caths, these are the clear, rigid plastic with an aqua connector at one end. (all the suppliers the hospital found for us only have the soft latex and they just don’t work). We’re in Northern Virginia - Alexandria. Any recommendations? PLEASE??
http://www.sophiesvoicefoundation.org/prevention.html
The Xiao Procedure holds the promise that children with spina bifida will be able to self-initiate bladder and bowel functions - eliminating the life-long need for catheterization and the use of diapers to guard against accidents.
http://sci.rutgers.edu/forum/showthread.php?t=176798
01-26-2012, 12:53 PM
BeeBee2
My Son
I haven’t been around much lately and had to even start a new ID - I just never could get my old ID working, but some of you will remember me as “BeeBee”. My son is a T12 from an MVA 7.5 years ago.
I wanted to let those of you who do remember me know that he died Tuesday night. I found him in his bed when I got home from work yesterday. No cause yet. Just dead.
Topics: Xiao Chuanguo |
6 Responses to “The Story of First Patient of Xiao Procedure Trial at Beaumont Hospitals”
Comments
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