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Carolyn was diagnosed with Adolescent Idiopathic Scoliosis (AIS) on her 11th birthday, just a couple of weeks before losing her home to Hurricane Harvey. During the aftermath of Harvey, she embarked on her scoliosis treatment journey. Despite diligently wearing a brace and practicing Schroth exercises, her spinal curve continued to progress. In 2019, she underwent spine surgery to correct her curvature. Now a high school student in Texas, Carolyn finds joy in dancing, playing violin, writing, and hanging out with her friends.

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My Journey

Diagnosis

 

I still vividly remember my wellness check-up on my 11th birthday. It was supposed to be routine, just like every year. My pediatrician would discuss my growth chart with my mom, assure us of my good health, and administer a couple of shots. Usually, that was the end of it, and I could go celebrate my birthday with friends at the mall.
 
But this time was different. During the check-up, my pediatrician asked me to bend forward. She seemed hesitant, stepping back and forth, touching my back, and observing my muscles. She noticed an asymmetry and suggested a spine x-ray, reassuring us it was just a precaution. The next day, she called with the diagnosis: Adolescent Idiopathic Scoliosis, a term unfamiliar to my parents and me. We were referred to an orthopedic surgeon.

At the 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 with 22 degrees.  A scoliosis brace was ordered, but the surgeon made it clear that it wouldn't reduce the curve, only slow down my scoliosis progression, giving me more time to grow before potential surgery. His words sent chills down my spine.

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. Meanwhile she made appointments with an orthotist and a certified Schroth therapist.

Harvey

 

A week later, Hurricane Harvey struck Houston, and my family and I found ourselves trapped in our home as the water slowly crept upward. On the harrowing night of August 28, 2017, we lost not only our home but also our cars to the merciless power of Harvey. Rescued by boat, I bid farewell to the place I had called home for 11 years, leaving behind memories etched in every corner.

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 lined the front of houses. But my mom's primary concern was my scoliosis rather than our submerged home.

My therapist was kind, and the exercises were manageable. Each day, my mom would insisted that I devote an hour to Schroth exercises before bedtime. I maintained weekly sessions with my therapist for ten weeks and faithfully continued the exercises at home. 

Fueled by the fear of undergoing surgery, Schr
oth exercising became a habit for me over time. However, wearing a brace presented a much bigger challenge for me. 

 

Braces

My mom took me to an orthotist after my first orthopedic appointment. The orthotist, a nice and fun lady, made a plaster mold of my torso, and then let me pick a color and pattern for my brace. Being an astronomy junkie, I chose a starry night pattern with a purple background, as purple was my favorite color. However, Hurricane Harvey slowed down everything, including the making of 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.
 
Upon receiving the brace, my orthotist explained the process of wearing it. I had a two-week break-in phase, during which I needed to toughen up my skin by rubbing it with alcohol. I needed to tighten the belts more and increased wearing time every day, with the target being 23 ho
urs a day.

While the brace made me uncomfortable, what scared me more was the prospect of wearing it to school. Just st
arting middle school, I, a self-conscious girl, didn't want to look different and become the gossip topic of other kids. I begged my mom to let me not wear it during school, promising to wear it every minute when at home. However, my mom was determined. She explained that the brace was my only way to avoid surgery. If I felt uncomfortable going to school in a brace, she suggested homeschooling or taking a gap year. Despite tears, I knew she was right. I agreed to wear it to school, and she took me shopping for clothes that could hide my brace.

I named my purple brace Poppy. With a lovely name, Poppy became less intimidating. I no longer hated her. Despite the sweats, bruises, and rashes, I knew Poppy was helping me achieve a straighter spine. Similar to my mom, even though sometimes I was mad about her strictness, I knew she loved me. On the first day wearing Poppy to school, I hid it under loose clothes, making sure it was not noticeable in front of the mirror.
 
While some kids bravely wore their braces outside, proud to be scoliosis warriors, I never had that courage. I often wondered if there would be a day when people no longer judge those who look different. 

 

Over time, I went through six braces, and the patterns and colors I selected reflected my changing taste. From starry nights to flowery prints to geometric shapes to plain colors, both I and my braces grew. Each brace had a name, becoming a friend witnessing my scoliosis journey. Among them, Poppy was the most unique and special.

 

Surgery

Despite wearing a brace 23 hours a day and doing daily Schroth exercises, my curve kept progressing. Each X-ray was a mental torture to me. I worked so hard, but I never got a reward. 
 
One day, my mom explained a new surgery treatment called Vertebral Body Tethering (VBT) to me. Unlike traditional fusion surgery that uses rigid rods, VBT employs flexible cords to straighten the spine, offering several advantages. It preserves motion, allowing me to continue dancing, and it avoids spinal fusion, enabling me to continue growing. To qualify for VBT, I must have substantial growth remaining for the modulation take effect. My mom said that given the rate of my curve progression, unlikely I could avoid surgery, and we should explore VBT when I still had the opportunity.
 
I was heartbroken. Despite realizing the diminishing hope of avoiding surgery, it was still a hard-to-face reality when my mom brought up the surgery option. Out of 3% of the population with scoliosis, only 5% required surgery. Why was I one of the unlucky 0.015%?
 
After a few days, I calmed down and told my mom I wanted VBT surgery. At that time, VBT was still undergoing clinical trials and had not yet received FDA approval. There were only
two dozen surgeons worldwide capable of performing the procedure. My mom scheduled an initial consultation with Dr. Samdani at Shriners Hospital for Children in Philadelphia. She learned from the internet that only patients with flexible curves in the range of forty to seventy degrees could qualify for this surgical option. 
 
A month later, 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. Eager to prove my curve's flexibility, I bent as much as possible on the X-ray table. Dr. Samdani confirmed I was the perfect candidate for VBT, with a very flexible curve and an ideal Sanders score. But he
was booked out for four months, and his scheduler would call us to confirm a surgery date. I felt relieved but anxious, fearing that my curve might grow out of VBT parameters during the 4-month wait. Consequently, I continued wearing my brace and exercising.
 
As the surgery date approached, I underwent preparations, including blood work, a lung capacity test, and an MRI, and I cleared out all the tests. As the surgery date approached, my fear grew, yet I knew I had to go through with 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 felt terrified, plagued by bad dreams. I told my mom that I was afraid I wouldn't wake up to see her, my dad, and my brother again. My mom assured me not to worry, as Dr. Samdani was one of the most experienced surgeons in the world, having successfully performed hundreds of VBT surgeries. 
 
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 team, and the anesthesiologists. An
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.
 
Upon waking up, I found myself in a dark room with my parents sitting anxiously next to me. Machines were beeping, and cuffs 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. 
 
The details of the immediate post-surgery period remained hazy. 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 images of my spine
. He inserted nine titanium screws into my spine, spanning from the T5 to L1 vertebrae, and reduced my curve from 66 degrees to 35 degrees. After one week, I was discharged from the hospital. We stayed in Philadelphia for another week before flying home. 
 
For the next six weeks, I remained homebound, supported by a compassionate homebound teacher who brought assignments and tests three times a week. Today, we still maintain our connection. 

Every six months, I either visited Dr. Samdani in person or sent him my X-rays. Due to the significant residual curve, he advised me to continue wearing the brace, which was ok to me since I didn't have to wear it to school.  I continued wearing the brace for a couple more years.

 
Revision

I grew 4 inches over the years, but unfortunately my spinal curve didn’t reduce further as we initially hoped. While there were moments of progress, there were also instances of lapses and regression. In 2021, after receiving my routine X-rays, Dr. Samdani discovered that my curve was off-centered. He suggested a revision surgery while I still had growth left. This news hit me hard; fate had fooled me not once, but twice. Unlike most patients who undergo surgery and move on, I found myself facing another procedure. Despite the emotional turmoil, we scheduled a surgery to be two days before Thanksgiving to minimize the school days missed during recovering.

The day before the planned surgery, I underwent a Covid test and a new set of X-rays, then met with Dr. Samdani for my pre-surgery appointment. To my surprise, he shared some unexpected good news. Over the past five months, my curve had improved and rebalanced to the center. Dr. Samdani explained that without revision surgery, further reduction was unlikely due to my limited remaining growth. If I wanted to go ahead to have the revision, 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 middle 30s, below the surgery range, and the revision was no longer a necessity, we had the option to cancel the surgery and continue monitoring. He said if I were his daughter, he would choose not to let me have the surgery now. We decided to cancel the revision surgery and our hotel booking, and we flew home. The relief was immense—I could now enjoy the holiday season and avoid a two-month absence from school. 

Benjamina

In the front flower bed of our new home stood a white Fringetree. Its trunk leaned to the right, escaping the shadow of our house to bask in sunshine. Came spring, it blossomed with delicate white flowers. Despite suggestions from my mom's garden friends to replace this crooked tree with a Texas crape myrtle boasting straight trunks and vivid, colorful blossoms, I loved it.

I've named it Benjamina, meaning a daughter of the right hand. My dad wrapped a belt around its tree trunk and anchored the other end to the stump of a chopped-down magnolia grandiflora. Every few months, he asked my mom to assist him in straightening the trunk and tightening the belt.

As I regained strength and improved over the years, so did my Benjamina. Three years post-surgery, I am mostly healthy and brace-free. This spring, my dad decided it was time to loosen the belt from Benjamina and set her free. In full bloom in my front yard, she radiates life and hope under the Texas sunshine. While she may never b
e perfectly straight, she is perfectly beautiful.

 

The background of this page features Benjamina's blossoms.

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