Two years after taking that fateful plunge into the shallow water leaving me a C6 quadriplegic I developed a massive Arachnoid cyst in my spinal cord. This cyst was ascending upwards and starting to impair my respiratory system. I was having trouble breathing.
I approached multiple neurosurgeons from all over the country and no one would operate on me. They said that once I started to lose physical function I would be a candidate for surgery. The added 30 to 40 pounds I was carrying around with me for the first few years of my accident definitely did not help matters.
This was probably the most absurd thing I had ever heard. Fortunately, I have an extremely motivated and intelligent father who traveled all around the world for me meeting scientists, neurosurgeons, visiting hospitals, etc. to explore my options.
He landed in Kunming China (Southwest China) with a group of Norwegian scientists who were observing a new and innovative spinal surgery at the People’s Liberation Army in China. Some of the surgeons had done over 3,000 spinal surgeries for lancing cysts in the spinal cord, decompression surgery, scar tissue removal, and a whole host of other surgeries.
Approximately 13,000 people sustain spinal cord injuries in the United States, but approximately 100,000 folks in China sustain a spinal cord injury due to the fact that they have a larger population. At first, it seemed daunting moving to another country for surgery in China, which one would not generally associate with top surgeons.
Time was running out for me because the faster this cyst started to ascend the closer and closer to death I became.
We decided to jump ship and move over to China from Miami where I was living at the time for the surgery, and then participate in a rehabilitation program that this particular hospital, Kunming Tongren Hospital, was offering.
I had spent many years on and off in China since I was 17 years old so I was familiar with the language, and I would just have to study neurosurgery vocabulary and caregiving vocabulary 🙂
I wrote a blog for two years, which I still have active called the China Quad Diaries
The adventure of how I finally arrived in China is another article altogether, but suffice to say we landed in the country in 2013 ready to slice and dice my spinal cord once again. It took about two months of working with the surgeons, purely for translation reasons, to understand the exact surgery and what they would be doing. I grew up in a very intellectual and science minded household, so we are keen to know every single detail.
I finally had surgery on May 14, 2013, consequently my sister’s birthday, which was not a moment too soon. The cyst had gotten so large that I was on oxygen 24/7 because I could barely breathe. We planned out every detail of the surgery and were confident we knew what we were getting into. We were so right and so wrong in the most interesting of ways.
My open spinal cord… And unbelievably clean and beautiful surgery. Actual excavation point
I rolled in for surgery with a team who did not speak English, so naturally I was conversing in Chinese, and they told me that when I woke up my life would be saved. They did save my life, but there were a few wild and wacky twists resulting in a complete cultural disconnect. Let me explain:
These phenomenal surgeons completed a 12-hour surgery in just under four hours. The reason? Well, they had performed so many of these surgeries it was a piece of cake for them. Surgery in China is also about an eighth of the cost in China as it is in the United States.
Now for the trouble … I woke up for my surgery in the ICU, but I was not quite sure if I was still in surgery. I had the feeling that somebody still had my spinal cord cut on the operating table. To top it off I could not speak. Unfortunately, they neglected to tell me that I would still be intubated after surgery. I could not find any of my family and I was trying to scream through my intubation tube all the while hitting everybody I could find with my arms. I was flailing about like a clown at the circus. I was trying to convey that I felt they had forgotten to stitch me up and close me up.
I suppose it is probably that feeling that some patients have when anesthesia doesn’t quite work right and they can feel their entire surgery. It was a complete nightmare. I think I scared the living hell out of most of the nurses and doctors in the ICU so they tied my arms down to the railings of the bed with purple string. I cannot recall why I remember it was a purple string, but it was definitely purple. So, there I was tied down to an ICU bed, intubated, and feeling like I was still in surgery. I must’ve passed out from the pain because when I awoke I found my irate brother screaming at the doctors and nurses.
The immediately pulled the intubation tube out of me and with the last breath I had in my lungs I tried to exclaim the pain was so unbelievably excruciating that something was terribly terribly wrong. Well, something was wrong! As it turns out I did not have any morphine, fentanyl, etc. after the surgery. I was on a straight ibuprofen drip … Yes, you read that correctly. Ibuprofen after spinal surgery… Go figure!
In Asian countries, the concept of pain is very different than in Western countries. Many people do not complain about pain as it is a sign of weakness, and if you cannot see it then how can it be there? With this cultural difference in mind, I believe many of the doctors thought I was just a foreigner complaining for no reason. They did not have much experience with morphine or fentanyl or any other type of major painkiller after surgery. They quickly rushed in order and started me on morphine right away despite being unsure how much to give me.
What happened you ask? Well, I’m pretty sure I overdosed on morphine. The walls started melting around me and spiders started crawling all over me. I gripped my mother and my brother tightly, who would not leave my side, and told them to please make the spiders go away. They were not the little spiders … they were the really big creepy ones that little kids have nightmares about. Over the course of several days we went on morphine, off morphine, on morphine, off morphine, etc. It was a very challenging 14 days, but I suppose they were doing the best that they could under the circumstances.
I believe I was the first foreigner they operated on in that hospital so I was a bit of a foreign celebrity, and the fact that they were torturing this poor foreigner did not look great for them.
Bottom line… They save my life and I survived! A number of other injuries ensued after that, which we took with grace and elegance as best we could, but that is for another column.
No matter how challenging the US medical care system is, I’ve learned a great appreciation for standards of care. You have to understand that China has only become westernized in the last few decades, so they are still playing catch-up.
Of course, I was less than pleased to wake up with ibuprofen after spinal surgery, but I was so excited not to die that I neglected to inquire about the pain management program after surgery. “My Bad” as they say!
I could look at my experience as horrendous, painful, and terrifying, but I choose to look at it as just another adventure in my crazy so-called “Quirky” life.
I will conclude with one of my favorite Winston Churchill quotes:
“If you are going through hell, just keep going!”
It is a motto that has worked for me over the past seven years and continues to do so … That is if you have a little bit of humor to accompany it along the way. Dark humor can be very helpful 🙂
(I insisted that my spinal surgery be videoed, which you can watch on YouTube)
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- My First Solo Trip with my Boyfriend as a Quadriplegic – The Art of Compromise - January 6, 2018
- CAREGIVING for Quadriplegic – Living in Fear or Trust? - December 10, 2017
- Danger: How Negativity About Disability Can Create Chronic Inflammation - November 18, 2017
- Spinal Cord Injury Sexuality: How I (Unexpectedly) Fell in Love - November 9, 2017
- How I Vacation as a C6 Quadriplegic - October 28, 2017
- My Lifelong Science Experiment - September 24, 2017
- The Game of Survival: Managing Fear and Health as a Quadriplegic - August 13, 2017
- Splashing Back into the Water: How I was going to swim again as a C6 quadriplegic - July 31, 2017