Beaumont Hospital's responses to patients' inquiries

The following are the copies of the posts at spinabifidaconnection.com, which were recently deleted by the administrator of the forum. Similar letters can also be found at:
http://ronandmelissa.com/wp/?p=52
http://www.facebook.com/topic.php?uid=6743851747&topic=6088
http://sci.rutgers.edu/forum/showpost.php?p=878421&postcount=44

08-19-2008, 03:17 AM
sanguine
New Member

Nerve rerouting for bladder Control -Xiao Technique

Hi -this is my first post (a response in Off- topic, but then realized it may be or more benefit here):

I inquired about the Xiao technique with the folks at Beaumont hospital. It seems they are still accepting potential candidates (my daughter is too young - the candidate needs to be at least 6 years old) Anyway, here is the response I got:

Thank you for your interest in our nerve rerouting research study here at William Beaumont Hospital for people with spina bifida, 6 years and older and SCI-paraplegic (as a result of trauma) adults, 18 and older, who have neurogenic bladder.

Dr. Xiao, in China, developed this spinal nerve rerouting procedure and has been studying it since the late 1980's. Dr. Xiao has done over 500 of these surgeries in China with excellent results-more than 80% do not need a catheter to empty their bladder after the nerve regeneration occurs. In Dr. Xiao's patients, those that regained bladder function also regained bowel function. With Dr. Xiao's help, we started doing this research study here at Beaumont in December 2006.

In the surgery, the spinal nerves are rerouted and if successful, the nerves regenerate (over a period of 6-24 months). If the nerve regeneration is successful, a new nerve pathway to empty the bladder is created. We can use a variety of spinal nerves for this pathway. If
it is successful, the person will be able to empty their bladder without the use of a catheter after this nerve regeneration.

In China, this procedure is now standard of care. Dr. Xiao has taught this procedure to surgeon's at all the major hospitals in China.

We have been following Dr. Xiao's progress for many years. During the winter of 2006, 3 of our Urologists-Dr Ananias Diokno, Dr Kenneth Peters and Dr Jose Gonzalez, all went to China to study under Dr Xiao and decided they wanted to bring this surgery to the US. In the US,
however, in order for a procedure to become standard of care and for insurances to cover it, it must be proven to work within the US. That means you must do research. This is why we are doing this research study here at Beaumont.

We did the first spina bifida child in the US in Dec.2006 and other SCI patients with Dr. Xiao. Everything went well. We completed 8 more spina bifida surgeries the first week of April 2007 with Dr. Xiao. We are beginning to see some encouraging results.

There are risks/side effects that need to be considered. This is a major surgery done under general anesthetic and should not be taken lightly. The risks of this surgery are weakness to the lower extremity (the operative side). Everyone will have lower extremity weakness for at least a period of time after this surgery. Participants may need a walker or even a wheel chair for a period of time. This is expected; this would not be considered a complication. We take a lumbar spinal nerve (a part of the nerve or all of the nerve if it is too small) and attach this nerve to the bladder nerve. The lumbar spinal nerves are responsible for walking. It can take time for other nerves to take over the function of the nerve (or the part of it) taken away. Physical therapy and time helps get back to their functioning prior to surgery. But there is no guarantee that their full function will return. Other risks include the risk of anesthesia - blood clot in the lungs, heart attack, stroke, pneumonia, death. These are rare, but you need to be aware of them. Anytime you make an incision, you risk infection. These are the risks.

We are the only site in the US performing this research surgery. The surgery, with the pre-op testing and 3 year follow-up procedures costs between $30,000 - 40,000 for each patient. We pay for all of these costs. The costs are not covered by insurance because it is research. Because there is 3 years of follow-up with this study, there are a lot of visits to Beaumont required. We do not provide hotel or transportation costs for out-of-state participants.

We had a private donor donate the money for all of our previous surgeries. We have applied for several grants that would allow us to continue this research by doing additional surgeries. Until we obtain another funding source, we are adding the names of interested candidates to our list.

Again, thank you for your interest. As I indicated above, children must be 6 years old to participate in this study. Your daughter is young. You have the advantage to watch the progress made in this area. This will allow you to make the best health care decisions for her. Let me know if you have additional questions.

Anyway thought I share this for anyone's benefit. The contact info:
Cindy Turzewski, R.N.,
Cynthia.turzewski@beaumont.edu
248-551-3355

Regards,
Sanguine

Last edited by sanguine; 08-19-2008 at 03:28 AM.

11-04-2008, 04:20 PM
kali
Junior Member

hi cheray
it sounds like you would have to contact Dr Xiao becasue you are in australia. so the operation would be performed in china. this is what I was told. "

you would have to write to the dr and write about your childs history wether he walks all his bowel and bladder problems etc and what kinds of operation he has had. Then the dr will tell you if it will be successful. I was told it would be 100% successful and he would also gain bowel control...will post his letter to me later once I find it

12-17-2008, 01:36 PM
kali
Junior Member

hi dawn

I have found parts of the doctors emails,

. In short, your son's"
neurogenic bladder and bowel due to spina bifida can be
cured by the procedure. I can schedule your son for the
surgery at the end of the year as the earlist in
Shangahi, China. There are too many patients waiting in
line. We operated on 620 kids with spina bifida in 2007
and number is goning to double this year.

Please keep in touch.

Chuan-Guo Xiao, MD

> > This is a research study with 3 years of follow-up
> visits - 10 visits
> in
> > all. The study does not provide transportation or
> hotel for
> out-of-town
> > (country) participants. We would not enroll someone
> that lived as
> far as
> > you. This procedure was developed by a Chinese
> doctor - Dr. Xiao.
> This
> > surgery is now standard of care in China. Dr. Xiao
> has taught this
> > procedure to surgeons all over China. It is done
> everyday in
> hospitals in
> > China. If you really want to have this procedure
> done on your son,
> we would
> > suggest going to China. It would be a lot closer for
> you and would
> not
> > require 10 visits (as it is not a research study
> there). If you are
> at all
> > interested in going to China, I would be happy to
> forward your
> information
> > to Dr. Xiao. I have done this with other families.
> Let me know.
> >

this is parts of the emails I had sent to me, I will continue to look for the other

as I said before I have great feelings about this operation.as for it affecting a childs walking ability later on. the risk is suppose to be so small, but when weighed with the chances of kidney infections, which might lead to the need of kidney transplants,if you dont do anything. which would you chooose? Anyways there is so much thinking that must be involved, a decision that cannot be rushed. I am also researching about adult stem cells, people are talking about it so much on this side of the world. Its available in Egypt , china, and so many other places, I believe it is another area to think about! In the near future I think it will be involved in curing spina bifida