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.