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 spinal decompression would likely improve my chances of motor function recovery as well as reduce neuropathic pain.
My father, ever the skeptic, told me he would not put much stock into those assurances, as he could not find any medical evidence that spinal decompression reduced neuropathic pain or improved motor function. Nonetheless, I clung hopefully to the doctors’ words as we finally settled on a date for surgery.
Showtime for Surgery
As it turned out, surgery could not have come soon enough. I was already having trouble breathing. By the time of surgery, I was gasping for breath and on oxygen many hours a day.
My surgical team performed the triple laminectomy and then opened up the dura to access the actual nerve bundles making up the spinal cord. From there, they worked their way very carefully around to the ventral side, where they removed the syrinx and cut away some of the scar tissue to allow my cerebral spinal fluid to flow more freely.
I woke up intubated, alone, without my family in the ICU, completely disoriented, and with nothing more than a dose of Ibuprofen. Yes, you read that exactly right … only ibuprofen!
I had not thought to discuss post-op pain management protocol with my surgeons in advance. I had assumed that I would wake up pumped full of fentanyl or morphine, since I just had three vertebrae removed and my spinal cord laid open.
I was trying to scream through my intubation tube and flailing my arms about. The nurses seemed to think I was having some sort of panic attack. They responded by literally tying my arms to my hospital bed so I wouldn’t tear out the intubation tube!
Without speaking any Chinese, one of my brothers then intervened forcefully and literally cut me loose. The next thing I remember was waking up pumped full of morphine and hallucinating. The staff was not familiar with morphine dosing, so I ended up heading down the proverbial rabbit hole on a wild hallucinogenic trip.
As a result of the excess morphine, my blood oxygen fell to 80, causing near panic in the hospital, and I was strapped into an oxygen mask for several days while they experimented with morphine dosage. (Since my stay, the Kunming Tongren Hospital has updated its practices and now has in place conventional international pain protocols.)
I later learned about cultural differences between East and West with respect to pain management. In China, people don’t typically complain about pain, especially the older generation, and have historically been taught to keep pain to themselves, seek some sort of alternative medicine such as acupuncture or tinctures and to stay brave through the agony.
I spent about a week recovering in the hospital and three weeks back in my bed at our apartment. While the hospital’s pain management philosophy may have left something to desire, nursing care was excellent. There was a nurse stationed in my private hospital room 24 hours a day, massaging my legs to make sure I didn’t get blood clots and checking my blood pressure manually every 15 minutes.
Once I fully recovered from surgery, I participated in the Kunming Walking Program, created by Young, five days a week for several hours a day. Unfortunately, I was unable to participate in the walking part of the program for most of my stay because of a broken bone in my leg. My life consisted of waking up in the morning, rolling over to the hospital, where the walking program was located, and participating in daily exercises that included stretching, lifting weights, cardio, and standing in a customized frame made by the hospital — for the entire two and half years I lived in Kunming.
When I was not exercising at the hospital I ventured out within Kunming. My family purchased a wheelchair accessible London taxi and I was able to explore parts of China I had never seen before. We took gondola rides up the sides of mountains, hopped around from town to town, tucking into little restaurants, gardens and the countryside. With a temperate climate that allows things to grow year-round, Kunming is one of the most beautiful cities I’ve visited.
Life in Kunming turned out to be pretty boring. However, boring seemed far better than being miserable and in pain. After the surgery my breathing immediately improved, albeit I was left with a persistent chronic neck pain likely due to nerve damage resulting from the surgery. Even with the chronic neck pain I still suffer from today, the surgery saved my life, which made the trip halfway around the world worth it in my eyes.
I was kind of indifferent toward life at that time, and I couldn’t find a good enough reason to move back to the United States. The cost of living is relatively cheap in China, and I had two fabulous caregivers whom I knew I simply would not be able to replace once I moved. So, in my mind, I was surviving fine and would stay put until I could figure out my next move in life.
The disability community in China is practically nonexistent, and there are few accessible buildings. Most seriously disabled folks in China are simply forgotten about. I spoke with many Chinese people with SCI who were so happy to participate in the Kunming Walking Program simply because they had nothing else in their life, and the hospital was a safe place for them to feel connected to folks in similar situations. The Kunming Walking Program offered “community” to disabled Chinese … no mean accomplishment, I came to think.
Naturally, I was a novelty because I was one of the few foreigners living in the city. When we wheeled half a mile to the gym every day, people would stop me on the side of the road to pet my blonde hair, touch my leg and ask me if I could feel it, or compliment me on the fact that I could understand what they were saying. I almost felt like a zoo animal, and that’s not meant in a derogatory way, because the Chinese were just so curious about who I was and why I was there that they were always trying to inject themselves into my life in some happy way or another.
After two and a half years living in China, I decided to move to Raleigh, North Carolina, to be closer to family.
I moved to China for surgery to remove the syrinx that I viewed as life-threatening. I do not question for a moment the technical competency of my Kunming surgeons, who successfully completed a difficult and dangerous surgical procedure, but I would be remiss not to point out they gave me high expectations for a reduction in neuropathic pain and none occurred.
Not only did my neuropathic pain fail to improve, I ended up with additional persistent chronic pain in my neck. To this day, I cannot sit in my chair for more than eight hours a day without feeling as though a knife is constantly running up and down the scar on my neck. Furthermore, spinal decompression did not result in improved motor function of any kind.
I don’t regret moving to China. It offered me an opportunity to head off a critical medical problem, and memories of my Kunming caregivers are some of my happiest since my injury. But as for others who may be tempted to try what I did, I’d say this: if you do not have strong command of the Chinese language, do not have a support system to help you in a foreign country, don’t need immediate lifesaving surgery, and if you do not know how to train your physical therapists to handle you safely, then I cannot in good faith recommend following the path I took.
Read Ingersoll’s full account of her stay in China at chinaquaddiaries.org.
** This post was originally published on http://www.newmobility.com/2019/10/to-china-and-back-for-syrinx-surgery/