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Carolyn was diagnosed with Adolescent Idiopathic Scoliosis (AIS) on her 11th birthday, just a few days before she lost her home to Hurricane Harvey. During the aftermath of Harvey, she started her scoliosis treatment journey. Despite her diligently wearing a brace and practicing Schroth, her curve kept progressing. In 2019, she had to receive a spine surgery to correct her curve. She is now a high school student in Texas. She enjoys dancing, playing violin, writing, and hanging out with her friends.

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My Journey

Diagnosis

 

I still recollected my wellness check-up on my 11th birthday. It was supposed to be uneventful as always. My pediatrician would explain my growth chart to my mom and tell me I was healthy and had nothing to worry about even though my weight was still in the lowest 10%. Her nurse would then give me a couple of shots, and that was it. After the appointment, I could celebrate my 11th birthday with my friends at the mall. 
 
But this time was different. My pediatrician asked me to bend forward; she seemed hesitant and paused. She stepped back and forth a few times, touching my back and rubbing my muscles on both sides. She explained to my mom that she noticed an asymmetry in my back and suggested a spine x-ray, but she assured my mom and me that it was just out of caution and there was nothing to worry about.
 
She called my mom the second day, notifying us that I was diagnosed with Adolescent Idiopathic Scoliosis, and referred me to a few orthopedic surgeons. I was too young to understand, but my parents were shocked as they had never heard about scoliosis. My mom made an appointment with the surgeon at the earliest availability.

At our appointment, the surgeon showed me the x-ray and explained that I had S-shaped scoliosis. My primary thoracic curve bent to the right with a cobb angle of 44 degrees, and my secondary lumbar curve bent to the left at 22 degrees. The surgeon ordered a scoliosis brace for me, but he told my mom the brace would not reduce my curve and would only slow down its progression, so I had more time to grow before I needed surgery. 

My mom was in denial, refusing to believe I could not avoid surgery. A few times when I woke up in the night, I saw her in front of a computer, looking at my x-ray, blowing it up, drawing lines, and sometimes measuring with a protractor on the screen. She desperately searched on the internet to understand scoliosis. She made an appointment with an orthotist and a certified Schroth therapist
.

Harvey

 

A week later, Hurricane Harvey hit Houston, and my family and I were trapped in our home for a couple of days, watching the water inch up. On the night of August 28, 2017, we lost our home and cars to Harvey. Being rescued by boat, I left the place I called home for 11 years. 

Schroth

 

Before the water completely receded from Houston, my mom started to drive me in her rental car to see my Schroth therapist in the Woodlands. It was a 50-mile drive from my town. From the highway, I could see the devastating damage caused by Harvey. Piles of ruined furniture, floorings, and construction debris in front of houses. My mom was worried about my scoliosis more than our submerged home.

My therapist was nice, and the exercises themselves were ok. Each day my mom would insist I do one hour of Schroth before I went to bed. I kept seeing my therapist weekly for ten weeks and exercised at home every day. 

Schroth was not bad. After a while, exercising became
a habit, as I was afraid of having surgery; wearing a brace was the one thing I had a hard time with.

 

Braces

My mom took me to an orthotist after my first orthopedic appointment. She was a nice and fun lady. She molded a model for me, then let me pick a color and pattern for my brace. As an astronomy junkie, I chose a starry night pattern with a purple background, as purple is my favorite color. Hurricane Harvey slowed down everything, including my brace. I heard my mom calling the orthotist's office every day, desperately asking when my brace would be ready. Finally, it was ready in early September.
 
My orthotist explained to us how to wear the brace. I would have a two-week break-in phase, during which I needed to use alcohol rubbing to toughen my skin, and I tightened up the belts more and increased wearing time every day. The target state would be I wear it 23 hours a day very tightly.

The brace made me very uncomfortable, but what made me scared was that I needed to wear it to school. I had just started middle school, and as a self-conscious girl, I didn’t want to look different and became the gossip topic of other kids. I begged my mom that I would wear it every single minute when I was home, but please let me not wear it during school. However, my mom was determined. She explained to me braces would be my only way to avoid surgery. If I felt uncomfortable going to school in a brace, she could homeschool me, or I could take a gap year. I cried and cried, but I knew she was right. I agreed to wear it to school, and she took me to shop for clothes that could hide my brace.

I gave my purple brace the name Poppy. With a lovely name, Poppy became less intimidating. I no longer hated her. Even though she gave me sweats, bruises, and rashes, I knew she was helping me to have a straighter spine. She was just like my mom, and even though sometimes I was mad about her being strict, I knew she loved me. On my first day wearing Poppy to school, I hid her under loose clothes. In front of the mirror, I made sure she was not noticeable.
 
Some kids were brave to wear their braces outside and were proud to be scoliosis warriors. However, I never had that courage. Sometimes I ask myself, would there be a day when people no longer judge people who look different from them? 
 
Over time, I have had six braces. The patterns and colors I selected showed my changing taste. From starry nights to flowery prints to geometric shapes to plain colors, I grew and so did my braces. I gave each of them a name, as they were friends to witness my scoliosis journey. However, Poppy was the most unique among all of
them.

 

Surgery

Despite wearing a brace 23 hours a day and doing Schroth exercises daily, my curve kept progressing. Each x-ray was a mental torture to me. I worked so hard, but I never saw a reward. 
 
One day my mom explained to me there was a new surgery treatment called Vertebral Body Tethering (VBT). Instead of using rigid rods, it used flexible cords to straighten the spine. It had many advantages over traditional fusion surgery. 

It could preserve my motion so I could still dance. It didn't fuse my spine so I could keep growing. It required children to have growth left to correct their spine. My mom said that at the rate my curve was progressing, I could not avoid surgery, and we should explore VBT when I still had the opportunity.
 
I was heartbroken. Even though I realized that my hope of avoiding surgery became diminutive, it was still a hard-to-face truth when my mom brought up the surgery option. I cursed the unfair fate. Out of 3% of the population with scoliosis, only 1% required surgery. Why did I become the unlucky 0.03%?
 
A few days later, I calmed down and told my mom I wanted VBT surgery. VBT was still in the clinical trial phase and wasn't FDA-approved. There were only two dozen surgeons who could perform this procedure worldwide. My mom made an appointment for an initial consultation with Dr. Samdani at Shriners Hospital for Children in Philadelphia. My mom told me only patients whose curves were flexible and in the range of forty to seventy degrees could qualify for this surgery option. 
 
After a month, we flew to Philadelphia to meet Dr. Samdani. He was very nice, and my parents and I immediately trusted him. He ordered spine and bone age x-rays. I was so nervous. I bent as much as possible on the table to prove my curve was flexible. Dr. Samdani said I was the perfect candidate for VBT: my curve was very flexible, and my Sanders score was in the perfect range. But he was booked for four months, and his scheduler would call my mom to schedule the surgery later.
 
I was happy and nervous as well. I was afraid my curve would grow out of VBT parameters during the 4-month wait. I kept wearing my brace and exercising.
 
I started to prepare for the surgery. I took blood work, a lung capacity test, and MRI, and everything looked good. When my surgery date got closer, I became scared. I was afraid, but I knew I had to do it. 
 
Finally, it was time. My parents and I flew to Philadelphia. I checked into the hospital the day before the surgery, and my mom stayed with me. I was so scared and had bad dreams. I told my mom that I was afraid that I wouldn't wake up and would no longer see her, my dad, and my brother. My mom told me not to worry, Dr. Samdani was one of the most experienced surgeons in the world, and he had done hundreds of VBT surgeries already. 
 
At 5 am on January 9th, 2019, I was woken up by nurses and wheeled into the pre-surgery room to meet Dr. Samdani, his fellows, the anesthesiologist team, and the nurses. My anesthesiologist gave me a drink and told me to say bye to my parents. My mom later told me I was laughing and giggling and waving goodbye to her, but I didn’t recollect anything.
 
When I woke up, I was in a dark room with my parents sitting anxiously next to me. Machines were beeping, and the cuff on my ankle kept pumping and deflating to check on my pulse. I asked my parents what time it was. They told me it was 3 pm. I was so tired and fell back to sleep. 
 
I could no longer remember all the details. My mom said it was my brain trying to protect me from unpleasant memories. All I could remember was that I felt very thirsty and hungry and cried for water and food, but my nurse said I could not have them until 24 hours later. 
 
When Dr. Samdani visited me, he showed me pictures of my spine. He put screws on my spine from the T5 to L1 vertebrae and reduced my curve in half. Before surgery, my curve was 66 degrees, and it was now about 35 degrees. After one week, I was discharged from the hospital. My parents rented a hotel room, and we stayed in Philadelphia for another week before flying home. 
 
At home, I was homebound for another six weeks before returning to school. My homebound teacher was a wonderful person. Three days a week, she would come to my home to bring homework and tests for me. We still stay connected now.

Every six months, I either visit Dr. Samdani in person or send him my x-rays. Because my residual curve was still significant, he asked me to keep wearing a brace after surgery, which was ok because he said I didn’t have to wear it to school. I kept wearing a brace for a couple more years.

 
Revision

I grew 4 inches over the years, but my curve didn’t reduce as we initially hoped. In 2021, Dr. Samdani saw my curve was off-centered and suggested I have a revision surgery while I still had growth. I was so devastated that fate fooled me not once but twice. Most of the patients had one surgery and then lived happily ever after. Why couldn’t I be one of them? But I had no choice but to face the setback. We booked an appointment for surgery and flew to Philadelphia five months later. 

The day before the planned surgery, I took a covid test and a new set of x-rays and saw Dr. Samdani for my pre-surgery appointment. He greeted my mom and me and brought some good news. He said my curve had improved in the last five months and had rebalanced to the center. He explained that my curve would not likely reduce further because I had limited growth left. If I wanted to go ahead to have the revision surgery, he could perform it by adding more screws and using a double cord to reduce my curve to 20s. But since my cobb angle was in the 30s, which is below the surgery range, and the revision was no longer a must, we had an option of canceling the revision surgery and continuing to monitor it. He said if I were his daughter, he would choose not to have the surgery now. We canceled the surgery and hotel and rescheduled our return flight. I was so happy that I didn’t need to take two months off from school.

Benjamina

We have a fringe tree in the front flower bed of our new home. Its trunk was leaning toward the right to escape the shadow of my house and seek more sun exposure. In the spring, it blossomed with white flowers. My mom’s garden friends always suggested replacing the unsightly tree with a Texas Crape Myrtle Tree with straight trunks and vivid, colorful blossoms. 

But I loved it. 

I called my scoliotic friend Benjamina, meaning a daughter seated at the right hand. My dad got a belt and buckles. He wrapped the belt around the tree trunk and anchored the other end to the stump of a chopped-down Magnolia Grandiflora. Every few months, my dad would ask my mom to help him strengthen the trunk and tighten the belt. 

I regained strength and got better over the years, and so was my Benjamina. Three years out of surgery, I am a healthy teenager and brace-free. This spring, my dad loosened the belt from the Benjamina and set her free. She bloomed in my front yard, full of life and hope, under Texas sunshine. She may never be perfectly straight, but she is beautiful.

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