A little over a year after I became a C6 quadriplegic in a diving accident, one of my MRI’s came back with a troubling finding in my spinal cord: a syrinx. In my case, if the syrinx moved up to C4-5, it could result in permanent breathing impairment
After speaking with a number of leading U.S. neurosurgeons, two things became clear, neither of them good. First, my particular syrinx was on the back side of the spinal cord and thus particularly challenging — and dangerous — to reach surgically. Second, we learned that pressure from insurance companies and lawyers often helped dissuade U.S. neurosurgeons from doing the surgery I needed, a triple laminectomy followed by reaching around inside my spinal cord and removing the syrinx, unless it was deemed urgent. Exasperated, my father asked Dr. Wise Young what he would do if I was his daughter. The succinct response: I’d take her to China. Young went on to explain that thanks to the nation’s massive population and a variety of other factors, more Chinese surgeons do this surgery than American surgeons, and, they were very competent.
Since syrinx removal surgery wasn’t medically pressing yet, and neurosurgeons in the United States were not keen to operate on me, we chose not to accept the risk of waiting until we were in an actual crisis.
Off We Go to China
After careful deliberation, my family and I decided in March 2013 to move from Miami to Kunming, China, a city with over 7 million people in Yunnan Province. Fortunately, I had spent quite a lot of time studying and even working in China between the ages of 17 and 25, so I was already fluent in Mandarin and familiar with Chinese culture.
My family rented an accessible ground floor apartment near Tongren Hospital and I hired two lovely live-in Chinese caregivers. My particular case was a big deal for Tongren Hospital as I was its first foreigner to undergo this type of surgery, and I was treated like royalty by the entire hospital team.
Once settled in Kunming, we created a surgical plan to remove my syrinx. The chief Kunming surgeon also proposed spinal decompression surgery — untethering the spinal cord by removing scar tissue — to allow the cerebral spinal fluid to flow more freely. He assured me that s