This is quite a wild story. In 2012 I developed something called an Arachnoid cyst my spinal cord. It was starting to ascend upwards, which was impeding my respiratory system to start, and what would inevitably lead to loss of the limited motor function I had. Unfortunately, no surgeon in the United States would touch me because the MRI was not particularly clear about the exact location of the cyst. My father traveled all around the world and ended up in southern China in a city called Kunming. Here he joined a group of Swedish scientists to watch a surgery on spinal cord decompression’s and cyst removals. The surgeons at the People’s Liberation Army had performed the surgery thousands of times and were confident they could help me.
Within several months we packed up and moved over to China. I had previously lived in China on and off over the last 10 years, so I was fairly fluent in the language. I had to learn vocabulary for care giving and neuroscience since they did not speak English there.
I actually created my first blog called China Quad Diaries (www.chinaquaddiaries.org), which I still keep active chronicling my two years living in China in addition to an in-depth look at my surgery.
On May 14, 2013 (my sister’s birthday) I underwent a procedure called a spinal laminectomy where they removed the vertebrae on the back of my spinal cord in order to gain access to it. They performed a spinal decompression so that the cerebral spinal fluid would flow more freely in my cord as well as lancing the cysts in there.
The surgeons were so skilled that they performed a 10 hour surgery in just under four hours. Unfortunately, they were a couple key questions I forgot to ask before surgery, which I had mistakenly assumed were common practice in Chinese surgery.
I woke up intubated, which was not explained to me, and in extreme distress. Unbeknownst to me at the time pain management in Asia is much different than the concept of pain management in the West. In the West doctors are quick to prescribe narcotics for any type of pain, but it Asia showing pain is a sign of weakness. So, I woke up feeling like my spinal cord was still being operated on. As I was intubated I could not communicate, so I started flailing my arms about in a wild & ferocious manner hitting every doctor or nurse I could.
I imagine they assumed I was just being a difficult foreigner, so they brought me up to the ICU and did not let my family see me for the next 12 hours. I kept trying to scream out through the tube, but, to my utter amazement, they took some purple string (this detail I remember so vividly) and they tied me down to the ICU bed. I must’ve passed out from the pain because I woke up with my brother screaming at the doctors. They took the intubation tube out and I was able to express that something was seriously wrong. We learned that they did not give me any morphine or strong narcotic. Rather, they had put me on an ibuprofen drip. I kid you not.
I’m not sure if we caused embarrassment to the hospital, but they immediately started me on a morphine drip, which was probably not the best idea because they were unfamiliar with the dosing. Within a few minutes the walls in my hospital room started to melt and spiders started crawl over me. I was overdosing on morphine and hallucinating as if I had just eaten an entire bag of mushrooms. I distinctly remember holding on to my brother and asking him to make sure the spiders don’t get me.
Over the course of the next seven days the dosing of morphine went up and down … I went from being a drug attic to feeling like I was going through withdrawal. It was a completely wild and crazy ride.
Leaving the aftermath of my surgery aside they did save my life. I definitely paid the price in the department of pain, but it was more than the American surgeons had offered me.
Watch my actual YouTube videos on the spinal surgery:
Video 1: No movement of the spinal cord: http://www.youtube.com/watch?v=w2soHLDNiWY&feature=youtu.be
Video 2: Spinal cord is again pulsing with the beat of my heart: http://youtu.be/KW2s-eOMcD0
On a funny note, the night before the surgery I was admitted into the hospital and they were preparing me. They told me to lean forward, which I did, and all of a sudden I heard the sound of clipping scissors. They were cutting off half of my hair behind my head and they do not forewarn me. I don’t have a lot of girly things in my life, but I did so tremendously love my hair 🙂 It looked ridiculous, but I laughed as they were about to save my life the next day.
They kept me in a neck brace for the next several months and after about four weeks they wanted me to start, not only standing, but walking in a walking frame. Now, I was not walking on my own, but rather the Chinese physical therapists would stand me up and push my legs forward one at a time. What transpired next is quite unbelievable … Check out the next story under “Breaking of my Femur & Shin.”