My journey with scoliosis: Casey’s story

By Casey Kent, CHOC Children’s patient

I was 10 years old when I found out that I had scoliosis. It runs in my family, and my pediatrician had been keeping a close eye on my spine, so I wasn’t too surprised. And at first, it didn’t really influence my day-to-day life.

Growing up, I played a variety of sports and after my diagnosis, I continued moving my body and staying active with tennis, softball and soccer. I eventually fell in love with cheerleading and dance.

After my diagnosis, my pediatrician referred me to Dr. Francois Lalonde, a pediatric orthopaedic surgeon at CHOC. I saw him twice per year to monitor the curve in my spine. It was getting more pronounced, so by the time I got to middle school, I started wearing a scoliosis brace to try to improve the curvature of my spine. Some people must wear their braces all day, but I only had to wear mine at night while I slept. After two years of sleeping with my brace on, Dr. Lalonde determined it hadn’t significantly improved the curve in my spine, so I didn’t have to wear it anymore and we just continued monitoring the curve. I was never embarrassed of this brace, but when friends came over for sleepovers during my middle school years I would have to explain to them what this brace was in my room. So, I was just extra cautious about who I let spend the night at my house.

During this time, I knew the curve was getting worse, but I only had mild discomfort, so I wasn’t in much pain. When I was 16, Dr. Lalonde and his colleague Dr. Afshin Aminian, another pediatric orthopaedic surgeon at CHOC, let me and my parents know that the curve in my spine had progressed to such a point that scoliosis surgery was the only option to correct it.

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Casey with Dr. Aminian after her scoliosis surgery.

I was kind of shocked to hear that I finally needed surgery, but I knew that surgery was going to make me better— the discomfort and spinal curve would go away, and I was ready for that.

We scheduled my scoliosis surgery for a few months later, when I would be on summer vacation, so that I would have more time to recover and wouldn’t have to miss school. I had never been to CHOC Children’s Hospital before, so the hospital setting was scary in my mind. Leading up to my surgery, my parents and I were given a tour, and the staff made sure I knew everywhere that I would be during my stay. That was peace of mind for my parents because they knew what was coming. I had peace of mind knowing a lot of other girls and boys had undergone this surgery before and had good outcomes. I just felt at peace at CHOC, and I knew that everybody wanted the best for me. It wasn’t a scary place at all.

I also knew I was in good hands with Dr. Aminian. He had a very calming presence, and he made me feel good about the decision to have surgery. I was never scared that anything would go wrong because I trusted him. He had done hundreds of these surgeries before, and that helped me feel super safe.

My surgery was a few hours long, and afterwards I was brought to the pediatric intensive care unit (PICU) to recover. I was there for a couple days for observation and pain management, and then I was transferred to the surgical unit for another few days before I was discharged.

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An X-ray of Casey’s spine, before (left) and after (right) scoliosis surgery.

I’d never been in the hospital or had surgery before, so I didn’t know what to expect for my recovery. I thought I would be awake or in pain, or maybe I’d struggle finding things to do and I’d feel bored. But my body was tired from surgery, so I honestly slept most of the time I was in the hospital.

One day on the surgical unit, I was having a hard day, and when another girl recovering from scoliosis surgery heard that, she sent me a flower. It completely cheered me up.

A few things that made my hospital stay more comfortable were bringing my favorite snacks for when I had an appetite and bringing a comfortable blanket from home. Before my surgery, my mom bought a couple pairs of inexpensive workout shorts and cut the lining out; I had something comfortable to wear in the hospital, and not having to deal with the shorts lining made it easier to use the restroom. Because I slept a lot, I kept my hair up in a bun so it wouldn’t get tangled. Although I had brought my smartphone and tablet to keep myself entertained, I found that I didn’t use them as much as I thought I did. I know some other patients who love reading brought books to pass the time. Volunteers would pop in and out of my room from time to time, offering to bring board games, video games or movies, which was nice. Although CHOC was a new environment to me, I felt so comfortable there that I was never scared. All the staff was really amazing, especially my nurses and Dr. Aminian.

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Casey and her dad, during her recovery from scoliosis surgery at CHOC Children’s Hospital.

Since I was in the hospital over the Fourth of July, we decorated my room with patriotic décor to make it feel cozy and homey. That was something I never would have thought to do if my mom hadn’t suggested it, but it made me feel even more comfortable.

Overall, the pain I experienced after surgery was different than I expected. I assumed it would be jolting or constant pain, but it wasn’t like that at all. Everyone goes through recovery differently, but I don’t think the pain was something other people couldn’t handle as well, if theirs was like mine. In the hospital, my pain was well-managed by my care team. At home, it took some time to navigate how to manage my pain, but it wasn’t as scary as I had made it out to be.

When I started my senior year of high school a few months after my surgery, I found a new normal. Although I could no longer tumble or stunt during cheerleading, I stepped into the role of co-captain and found other ways to still participate. It took me a few months to get used to what I call my “new body” and the correction made to my spine, so I didn’t work out for a few months. Now, I’m back to being as active as I was before surgery. I consider fitness a crucial part of my life; I am lucky to have an able body, and I feel my best when I’m active. I chose not to continue cheerleading in college but found that I love kickboxing classes.

These days, I’m studying business at the University of Southern California, and I’d like to pursue a career on the business side of the medical field. If I hadn’t had scoliosis, I wouldn’t have realized that this is what I want to pursue for my career. I want to feel like I’m paying it forward and helping people, even if not directly as a doctor or nurse.

Scoliosis has put a lot of things in perspective for me. Having been through a spinal surgery, I label myself as determined. I’m grateful for my experience. It has helped me become a better person; It has added to my story.

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Living with Scoliosis: Jennifer’s Story

By Jennifer Schultz, CHOC Children’s patient

At 8 years old, I was diagnosed at the CHOC Children’s Orthopaedic Institute with idiopathic scoliosis. As a young child, I was not aware of the significance of this lifelong three-dimensional curvature. My baby blue night brace arrived two weeks later. It was a warm insulator around my spine during chilly winters, but during summers it turned into a sweltering, body-hugging, coil-wrapped anaconda. Over the years, wearing my brace was simply part of my nightly routine; the only modification was the arrival of a pink brace, a green one, and finally a gray brace, each increasing in size.

I experienced a major growth spurt – and an increase in the curvature of my spine – in middle school. Up to this point, playing tennis and the piano had been my go-to activities. Even though my doctor disclosed that tennis had no negative impact on my spinal curvature development, my family decided I should discontinue my daily practices, as well as play the piano fewer hours each week. We decided swimming would be a balanced and safe exercise. I started swim year-round with a local club, SOCAL Aquatics, to improve and strengthen my core and back muscles. I was not a big fan of the cold water, especially during the chilly winter nights, and this resulted in my wearing an embarrassing wetsuit for every practice. Quitting tennis and starting swimming were very difficult to accept, but I knew if I continued swimming, I would benefit in the end.

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After a growth spurt prompted an increase in the curvature of her spine, Jennifer took up swimming in place of playing tennis and piano.

Wearing a brace and swimming year-round have helped maintain my fixed curvature. A few years ago, Dr. Afshin Aminian, medical director of CHOC’s Orthopaedic Institute, directed me to the CHOC website, which contained several sets of exercises for patients with scoliosis. I started doing these stretches every day in my room for about 20 minutes. I also began SCHROTH physical therapy to improve posture and reduce progression of the curve. Doing daily breathing and walking exercises are very therapeutic and soothing to my mind and body. With enough practice and concentration, I can utilize these routines in the future should I start to feel discomfort in my back.

Two years after my growth spurt, my doctor prescribed a day brace. The shift from a night brace to a day brace proved to be even tougher on me both physically and mentally, especially since I was required to wear my brace to school. Not only was this a little humiliating, but it was very difficult to sit at a desk and maneuver around campus. The stretch marks, bruises and rashes on my back didn’t make my diagnosis any easier to accept. However, this brace was the only tool preventing my back from succumbing to a more dangerous fate: surgery. Always trying to maintain a more positive outlook has been tricky, but it has helped me minimize some of my discomfort and understand my condition could be much worse if I did not have access to a medical brace.

When I entered my freshmen year of high school, I noticed several of my friends were also wearing spinal day braces. Loose clothing became the norm for us, articles that would discreetly conceal the uneven protrusions of our braces. I empathized with my friends about some of the humiliation and discomfort of scoliosis. This was what motivated me to start a high school health club to promote healthy lifestyles and raise awareness for various health issues, including scoliosis. My vision included fundraising for orthopedic research in local hospitals and POSNA (Pediatric Orthopedic Society of North America). We sold Jamba Juice BOGO cards. Our funds helped a research project on the physiological effects on adolescent scoliosis patients. This study revealed that most teenagers with scoliosis have reduced self-esteem due to their physical appearance, and they do not share these feelings with their parents. In addition, we donated $750 to Dr. Aminian’s current research at CHOC, which is focused on utilizing ultrasound for early scoliosis detection and monitoring. This research is personal to me since I was exposed to X-rays two to three times a year to measure my spinal curvature. The ultrasound is less harmful to patients’ health, and early detection is key to prevent progression.

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After she started high school, Jennifer formed a health club to promote healthy lifestyles and raise awareness for various health issues, including scoliosis.

After eight long years of wearing a back brace, my spine has finally stabilized at a solid 45 degrees. My four braces currently sit inside my closet, each representing a challenge I was able to overcome. Wearing a brace was my greatest hardship. Avoiding back surgery was my greatest triumph. Persistence and dedication are key; keeping the brace on long as possible is the smartest thing to do. I learned that the opinions of my peers should be low on the priority list; my well-being is far more significant. What I realized most is that my brace ultimately made me mentally and physically stronger. Scoliosis made me understand how I could make a difference by supporting the cause and my peers.

Fundraising for scoliosis research was an unforgettable experience that allowed me to assist my friends and other patients with scoliosis. As I learned more about orthopedic research, I wanted to delve deeper into biological laboratories to understand and discover the underlying cause of scoliosis. I recently earned an opportunity to work in a local lab, where I assisted in the study of cell polarity and craniofacial development in zebrafish. Currently, the lab is using zebrafish with scoliosis to study potential mutants or mechanisms that cause idiopathic scoliosis. Although recent publications may offer reasons for the cause of congenital scoliosis in humans, the cause of idiopathic scoliosis remains a mystery in zebrafish and humans.

After acquiring hands-on experience and deeper scientific knowledge in the lab, I would like to attend a college that allows me to do undergraduate research in the fields of cell biology and genetics. My ultimate goal is to graduate with a PhD in cell biology and become a lab researcher to potentially find the cause to conditions and diseases that have similar characteristics to idiopathic scoliosis. My dream is to help unlock the code and find a cure for many childhood ailments.

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Personalized Spinal Implants: Nikki’s Story

Four. That’s the number of days it took for Nikki Clark to return home following scoliosis surgery at CHOC Children’s Hospital. Dr. Afshin Aminian, an internationally-recognized expert in pediatric orthopaedics and medical director of the CHOC Children’s Orthopaedic Institute, performed the surgery using the latest techniques and technology to minimize pain and yield the best outcome for his teen patient.

A customized approach to care

Nikki was among the first patients at CHOC to benefit from personalized spinal implants. Based on detailed measurements and perioperative planning, customized rods were created to the precise length and shape of Nikki’s spine. The goals of this approach are better alignment and accurate correction of the patient’s spine. Customized implants and patient-specific rods decrease surgical time. In addition, they have the potential to improve recovery time and minimize future problems related to scoliosis.

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X-rays of Nikki’s spine, before and after receiving custom spine implants during scoliosis surgery.

“Our specialists have fine-tuned the most innovative, effective treatments for scoliosis, with a focus on maximizing each patient’s ability to function, grow and enjoy quality of life,” says Dr. Aminian. “Most of our patients are active teens, who are eager to return to their sports and activities. We want to do everything we can to help them do that.”

Making the jump

A swimmer and competitive water polo player, Nikki was thrilled to hear Dr. Aminian’s approach to care. Less than a year after being diagnosed, she decided to pursue surgery rather than wait. Her focus:  being ready for the upcoming season.

“I knew my life was going to get busy and really wanted to make sure I could play water polo during my junior and senior years. I wasn’t afraid of the surgery or the pain. I was more worried about not being able to play,” explains Nikki.

The morning of her surgery, Nikki began feeling anxious; not scared, as she pointed out to the child life specialist who came to check on her in pre-op. “I knew I had the best doctor, at the best hospital in California, and was ready to get the surgery over and done,” recalls Nikki.

A few hours after surgery, Nikki was surprised she wasn’t experiencing as much pain as she anticipated. The next day, a physical therapist helped her sit up for the first time. “It felt so good to finally be able to move,” says Nikki, who also enjoyed ordering milk shakes from CHOC’s room service menu. The chocolate banana one was her favorite.

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After scoliosis surgery to receive personalized spinal implants, Nikki was surprised she wasn’t experiencing as much pain as she anticipated.

She continued to follow all the guidelines, including getting out of bed to walk. Her physical therapist and nurses were among her biggest cheerleaders, praising her for quickly reaching the milestones required for her to go home. On Nikki’s fourth day at CHOC, Dr. Aminian proudly announced she was going home.

Nikki’s recovery at home continued to progress at a record pace. A month later, she returned to school. Two months later, she was back as a junior life guard in Newport Beach. The determined athlete surprised everyone by finishing the “monster mile,” which includes running a mile and swimming a mile. By the end of summer, she had also completed eight jumps off the pier.

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Nikki loves being outdoors, and quickly returned to her active lifestyle after scoliosis surgery.

Back in competitive water polo, Nikki proudly shows off her surgical scar. She’s been approached by other players, who have scoliosis. She encourages them to “make the jump.”  “You’re strong and in great shape. You can handle surgery,” she tells them.

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Living with Scoliosis: Ellie’s Story

Ellie was a typical seventh grade student who enjoyed playing volleyball when, during a routine physical, her pediatrician noticed that one shoulder appeared to be a little higher than the other. Her mom was told to keep an eye on it, but since it was minor, not to worry. A few months later, minor back pain after a growth spurt lead her mom to discover a curve in Ellie’s back.  Another trip to the pediatrician soon followed.

Initially Ellie and her mom Gail thought the back pain might be due to carrying a heavy backpack around school every day. But Ellie’s pediatrician diagnosed her with scoliosis, and referred her to Dr. Afshin Aminian, director of the Orthopaedic Institute at CHOC Children’s.

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Dr. Afshin Aminian, director of the Orthopaedic Institute at CHOC Children’s

“I wasn’t exactly happy about my diagnosis at the time,” says Ellie. “I was upset because I thought it would affect my daily life and I wouldn’t be able to do all the things I was used to doing, like playing volleyball, but Dr. Aminian helped me along the way and I grew into wearing my brace.”

The curve in Ellie’s spine was less than fifty degrees, and non-operative treatment was recommended. She received a custom-fit brace that would apply pressure to the areas where the spine was exhibiting deformity, in order to reverse the curvature and prevent it from getting worse.

“It made me more self-conscious and it made the little everyday things people take for granted more challenging, such as tying my shoes. But I learned to adapt, and even more than adapt, prosper. Time gave me the gift of wisdom to deal with my scoliosis; scoliosis gave me the gift of knowing challenges are inevitable but my defeat is optional,” she says.

An example of a Boston Brace, like the one Ellie wore.
An example of a Boston Brace, like the one Ellie wore.

Wearing the brace practically around the clock took a few weeks to get used to. The first few nights she slept in a sleeping bag on her bedroom floor because it was more comfortable for her back.

At the time, Ellie and her mom wondered if she’d be teased for wearing a brace every day.

“I didn’t know what scoliosis was before my diagnosis. We visited with a family friend who has scoliosis and she gave me great ideas about what clothing to wear with my brace, and now you can’t even tell when I’m wearing it,” she says. “I saw that she was doing well after wearing her brace every day, so I always knew that I would be as dedicated as she was, and wear mine every day, too.”

Long tank tops that were soft and comfortable, loose-fitting shirts, and skirts became wardrobe staples as Ellie tried to camouflage her brace. Because of how far her brace comes down her back, shirts that are a bit longer in the back also helped, she says.

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Long tank tops are one way Ellie camouflaged her brace.

Hearing stories of other scoliosis patients who weren’t as regimented about wearing their braces reinforced for Ellie the importance of sticking to her brace regimen. She made special arrangements with her physical education teacher at school and her volleyball coach to change in private before class and practice because of her brace.

“Having scoliosis wasn’t Ellie’s first choice, but thanks to good support from her school, teammates and friends, she is thriving. Scoliosis just added a little complexity to things, and Ellie has mastered that very well,” says Gail, who helps Ellie tighten her brace after every time she puts it on and takes it off.

Thanks to Ellie’s dedication to wearing her brace every day, the curve in her spine drastically decreased, and she is now slowly able to decrease how often she needs to wear it, and in a few months, she will be brace-free.

“Scoliosis is 70 percent mental and 30 percent physical, so attitude is key,” Ellie says. “If you have a good attitude and are relentless in your bracing, you realize you sacrifice little for your future health.”

Ellie’s commitment to her care team’s plan was evident.

“Part of the reason Ellie’s bracing was so successful was due to her commitment to wearing her brace religiously, up to twenty two hours per day. She was disciplined and it paid off,” says Aminian.

Ellie’s hope for recently diagnosed scoliosis patients is that they would also prioritize their doctor’s orders over what other kids at school might tease them about.

“When I first got diagnosed and got my brace I was really scared and didn’t know what it would mean for me, but eventually you just get used to it, like braces. It’s uncomfortable at first, but every day it gets more normal,” she says. “It really works if you do it right, but you only get one shot at it. People shouldn’t worry too much about being teased but if they do, dealing with it makes you stronger in life.”

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Living with Scoliosis: Jessica’s Story

During a routine check for scoliosis during physical education class in seventh grade, a teacher noticed a slight curve in Jessica’s spine. A trip to her pediatrician soon followed. X-rays showed a thirty degree curve and since that was considered slight, follow-up imaging was recommended for a year later. By that time Jessica’s curve worsened by 15 degrees, and she was referred to Dr. Afshin Aminian, pediatric orthopaedic surgeon and director of the CHOC Children’s Orthopaedic Institute.

Bracing was initially recommended to try to prevent Jessica’s curve from getting worse.

“People my age don’t know that much about scoliosis even though it’s so common,” says Jessica. “I only had to wear my brace at night while I was sleeping, so no one ever really saw it or had the opportunity to tease me because of it, but they still asked questions, like was it comfortable or not.”

Although Jessica was vigilant about wearing her brace as instructed, her curve worsened by another twenty degrees, to nearly 70, and surgery was recommended. As a lifelong dancer, and a member of her high school’s competitive dance team, Jessica was initially worried that having surgery to correct this significant curve would affect her flexibility.

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Jessica’s spine, before and after surgery.

“It’s very common for children or adolescent patients to be hesitant or even fearful when they first hear they need surgery,” says Dr. Aminian. “We encourage all of our patients to ask a lot of questions so they really feel like they are involved in their care team. We remind them that the team of orthopaedic surgeons at CHOC uses the very latest methods in a setting that’s specially designed for kids and teens, so they are in the best hands possible.”

Jessica’s surgery was ultimately set for winter break during her sophomore year of high school.

“All of my nurses were so impressed that I was up and walking the next day, but after I went home it was harder than I thought to move around” she said.

At a check-up with Dr. Aminian a few weeks later, Jessica was healing so well that she was able to return to school three weeks after surgery, as opposed to the three month break she had expected. Thanks to her flexibility as a dancer prior to surgery, she could even touch her toes at her follow up appointment, to the surprise of her care team.

Getting back into the groove of a full school day did not come without challenges. To protect her spine as it continued to heal, Jessica had to adjust to sitting for longer periods of time, something she slowly worked up to before returning to school. She also brought a small pillow to school to make her desk more comfortable, and made arrangements with teachers to keep textbooks in class so she didn’t have to carry them around.

“For an active person like me, not being able to bend, twist or lift anything for three months was hard, but in the end it made me thankful because my recovery was temporary, and overall I am really healthy,” she says.

Jessica knew she wanted to document her recovery phase, so she asked her mom to film some footage while she was in the hospital. That eventually morphed into a series of YouTube videos educating others on scoliosis, recovery tips, and sharing her own journey with the condition. When she was diagnosed, she knew others who had scoliosis, but no one’s curve was as severe as her own, so some peer-to-peer questions were left unanswered.

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After her own successful scoliosis surgery, Jessica now imparts wisdom on other teens suffering from scoliosis.

“I want other scoliosis patients to know that it’s going to be hard, and you will have times when you can’t do something, but I promise it will get easier if you just go at your own pace and follow your doctor’s guidelines,” she says. “I love getting messages from people that watch my videos, thanking me for helping to calm their nerves before surgery.”

Filming these videos and helping other patients has helped to fill the void that dancing left. After losing one year of practice time due to surgery and recovery, Jessica decided not to go back to dancing.

“I’m busy in different ways now,” says Jessica. “Dancing provided great memories for me, but I’m on to a new chapter now.”

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