Life After Surgery

My Scoliosis Story

My idiopathic scoliosis was discovered when I was 12 years old. When you wear a ballet leotard every day, it’s only a matter of time before noticing that one shoulder protrudes more than the other. I had to wear a back brace, which I can best describe as a corset made of bone-like plastic, over my uniform to school during 7th and 8th grade. I only got to take it off when I showered, ate, and danced. I went to a Feldenkrais practitioner in tandem, a less invasive form of physical therapy that I would highly recommend to those with physical limitations.

By the time I was 17 years old, my orthopedic surgeon had told me that my spine (an s-curve: 52-degree thoracic curvature and 38-degree lumbar curvature) would get 1 degree worse every year if I did not undergo spinal fusion surgery.

Spinal fusion surgery is said to be next to open-heart surgery in the level of severity it entails. I was prone (on my stomach) for 9 hours, lost pints of blood, and had 5 lbs of stainless steel (Harrington rods) bolted and screwed in, fusing 10 vertebrae.

The recovery time is excruciating. Have you ever been in so much pain you thought your body might give out and die? I spent the first couple weeks laid on a recliner in my living room with my mother’s post-LASIK sunglasses because my eyes were so sensitive to light. My senses were heightened that I could smell a person’s body odor as soon as they entered the room. It wasn’t usually a pleasant smell either. Simultaneously, I went through withdrawal from the hospital’s morphine drip, took Norco almost every hour because, after all, the area around my central nervous system was just torn apart, then struggled to find the proper nausea medication to keep the pain pills down. My throat was still on fire from when they yanked my breathing tube out (yes, I was conscious of that due to a freak accident where my tongue temporarily turned black and swelled to the size of my mouth during the last hour of the surgery). It was all beyond miserable.

After a couple of weeks, I began to walk and eat without help. The light didn’t bother my eyes, people’s body odor didn’t repulse me, and I could watch TV and listen to music without getting overwhelmed. Each day got a little better.

A difficult summer passed, and I returned for my senior year at boarding school in Connecticut. Miraculously, only 6 months after my spinal fusion surgery, I was not only dancing in our winter dance show, I was choreographing and even had a solo. My orthopedic surgeon at UCSF said it was the quickest recovery from this type of surgery he had ever witnessed and claimed it was due to my dancer flexibility and strength.

I never danced with a ballet school again. Even though my teachers encouraged me to become a professional dancer, I knew dancing was not what I wanted to do for a career, even before my surgery. After the fusion, my arabesques and backbends were never the same. I began dancing for fun, taking up different styles like Latin and contemporary to fuel my soul.

The following two years, I had cosmetic surgery on the scar twice because the scar would spread each time due to its location between my shoulder blades. Around the two-year mark, I began experiencing pain in my spine. It began as a dull ache and, over the course of a year, began to affect my studies at college. Meanwhile, a lump began growing over my spine in between the shoulder blades. I had culture tests done on it; you know the one where they inject the dye, and you watch it go throughout your body on a monitor? However, the culture tests all came back negative - no infection detected.

Everything changed while I was on spring break with my friends in Florida. As we were ready to head to the beach, the day we got there, I felt something dripping down my back. The lump (which had grown to the size of two golf balls next to each other) had literally erupted. I will spare you the graphic details, but sure enough, it was an abscess that had been growing. They literally stapled me back up, and I left my university in Rhode Island and flew home to San Francisco. I spent 5 days in the hospital there, underwent emergency surgery. I had a hole the size of a quarter draining fluid out of my back for 4 months (as directed by my orthopedic surgeon). When the infection did not heal itself, it was time for my fifth and final surgery.

I will never forget waking up and seeing my world-renowned orthopedic surgeon standing next to my bed, looking so defeated. He says calmly, “we had to take the rods out.” Now let me insert that this does not affect the fusion. In fact, after the initial fusion, the rods are unnecessary, but most people do not have them removed because that is just another surgery to endure. I remember my surgeon saying that they would go in and clean up the rods, but I knew something much more serious was going on in my heart. My spine only gained a small amount of mobility.

In addition to my spine squirming with infections, one of my vertebra was worn down by the bacteria, and so I had to wear a back brace AGAIN (the same kind as before) for 4 months, 24 hours a day, for the growth hormone to stabilize the weak vertebra. So I had the infectious disease team, the orthopedic team, and the back brace team coming in and out of my hospital room for the week, I spent there, which felt like an eternity longer.

While in the hospital, I refused to take any pain medication because the withdrawal from the morphine from my first surgery was so miserable. I didn’t even take Advil! I was in plenty of pain, but the motivation to avoid withdrawal was greater. It is truly amazing what the mind will do when it is determined.

It turned out that I had not one but three infections. They were all water-based, which is why they did not show up in the culture tests… I hope medicine has addressed overlooking an issue like this since! I took some of the strongest antibiotics on the planet (Vancomycin being one of them), which was given through a PICC line (a tube that ran through my arm vein to my heart). I also had two tubes draining fluid out of my spine. Luckily the antibiotics and tubes were only in for three weeks.

Once I had the PICC line and tubes removed, my mother took me for hikes in my brace. I remember walking on the trail, and people would pass and do a double-take as they saw this girl walking up the mountain in a vibrant, beautifully painted brace (shout out to my amazingly talented friend, Kathleen). She painted roses and gold birds on the front and back of my brace.

I won’t lie to you… the physical pain isn’t the worst part of recovering from surgery: it’s the mental and emotional pain of watching your friends live their lives while you lie there immobile, feeling powerless. That’s when you are handed the choice to step into a new identity. Your friends and family (most likely) don’t know what you are going through, and you have yet to find out who you will be when all this is over. Although at the time, it never feels like it will end - it does. And a few months go by, a year, a few years, and suddenly you realize you’ve forgotten the pain. You fully step into your reality of a different version of yourself. Not the same, maybe not capable of what you once were capable of (physically), but mentally… you are infinitely more resilient than you were before your surgery.

I had a newfound drive to challenge and test what I was capable of. I didn’t do anything crazy… well, I jumped 18,000 feet out of a plane once, but I am EXTREMELY mindful of what could really do damage to my spine. I mean, to this day, I still walk very, very slowly down a hill or on ice because I’m terrified of falling and hurting my spine; I do risk serious consequences. However, I dance, do yoga, and I even trained in Muay Thai for 2.5 years. I won’t ever compete in boxing; of course, I won’t become a professional dancer or master yogini, but it’s all phenomenal physical and mental exercise. And the point is, I CAN DO IT.

Watch me explain the rod removal process in more depth here.

The Story Continues...

I was pain-free for 7 years after I had the rods out. In the Fall of 2016, I began noticing that I had difficulty focusing my eyes in one place, i.e., maintaining eye contact while having a conversation or reading. I would get fatigued, and my eyes would sort of wobble out of focus. I also started to notice neck pain right around C2 and C3. I didn’t think much of it until one morning; I woke up feeling like I got hit by a truck. Later that day, I started to get disoriented at the grocery store looking for my items in the isles. Something had changed. Perhaps it had been building. Over the next year, I had it checked out by all the experts. I had an MRI, saw a neurologist, neural-ophthalmologists, optometrist, chiropractors of all kinds, specialists, enthusiasts, functional medicine, Chinese medicine, you name it, I probably did it. I even saw a TMJ specialist and had a costly jaw treatment to realign my jaw, hoping that would solve the issue. It didn’t. I wore a plastic appliance on my bottom teeth all day long for 12 weeks, including injections of dextrose in my jaw and neck every 3 weeks to inflame the muscles and catalyze regeneration. It was super sexy, and I talked with a lisp.

I was exhausted and disheartened, especially after spending so much money, running around to so many specialists. On top of everything, I had stopped all physical activity (a big part of my life) and was only wearing my glasses, not contacts, as recommended by my optometrist. This wasn’t an eye issue, though. And I know this because my optic nerves were examined, I had Lasik done, and my eyesight became 20/20, but the neck pain and struggles with eye focusing continued. I’ve gone through periods where there was no pain after finding an amazing chiropractor at home in San Francisco. She used the cupping technique in a way I’ve never experienced. She would drag them along my spine to break up the scar tissue.

I haven’t had spine pain since and often would get pain right between my shoulder blades. I recommend this method to anyone experiencing pain between their shoulders because it could be caused by built-up scar tissue.

I have since moved to Boulder, CO, and have recently found a chiropractor as effective as her. So I write this not having overcome my ailments but accepting them and still searching for answers. None of this has to do with scoliosis directly. My neck is long, too straight, and has a reverse curve at the base. I have difficult spine karma, you could say. I persevere and continue dancing and traveling because my life was on hold for a year with no improvements, so I might as well keep living how I want to live and managing the pain as much as I can. If this is how I must live for the rest of my life, I have come to peace with that. I can still do almost everything I want, even if it takes more effort and concern. This is the way of joy, though: accepting what is and being grateful for everything I can do.

“I am healing. I know this to be true.”

I’m a firm believer that if you say something enough times, positive or negative, the mind will believe it, and the body will believe it. “I know it to be true” - on a cellular level; I can feel my body trying its best to heal all the pre-arthritic, degenerative muscles in my neck, jaw, and shoulders. The body regenerates and instinctually, intelligently tries its best to restore balance. “I know it to be true” - I have to close my eyes and say this over and over again... until it’s true.

Follow Our Stories

A couple of years ago, my friend Molly and I decided to start an Instagram page where we post our stories and others’. We’ve created a supportive community where we share empowering pictures of people with their scars and their words to describe their resilience. Please join us and reach out to us there if you would like to be featured or if you want support during your recovery! It’s been uplifting to connect with so many who share similar healing journeys that are so painful yet so positive and inspiring.

@life.after.surgery.project