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.

jennifer-scoliosis-high-school
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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Warming Up to Wound Care: Nico’s Story

Nico’s birth was full of surprises for his mom Jennifer. The biggest one being that he was a boy, when all along she had been expecting a daughter. That wasn’t the only unexpected realization. He lacked a fully-formed tibia (the bone that connects the knee and ankle), was missing his left thumb, and had several structural heart disease defects, none of which had been diagnosed prenatally.

Unexpected heart defects

Nico was diagnosed with unbalanced AV Canal (AVC), Anomalous Pulmonary Venous Connection (APVC), and Ventricular Septal Defect (VSD) due to the underdevelopment and abnormal formation of his heart and major blood vessels. Jennifer learned early on that her son’s heart conditions were treatable with a series of open heart surgeries and/or cardiac catheterization procedures.

The day after he was born, Nico was transported to CHOC Children’s. He underwent his first heart surgery when he was only three days old, under the care of Dr. Richard Gates, a CHOC Children’s pediatric cardiothoracic surgeon and co-director of the CHOC Children’s Heart Institute. Nico’s second heart surgery happened before his first birthday, and he’ll have a third heart surgery later this year.

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Nico, who is today a happy pre-K student, has already endured several surgeries.

“Despite Nico’s significant heart condition, he has responded well to each surgery, becoming stronger right before our eyes,” says Dr. Gates. “I look forward to his final surgery which should allow him to continue to be active and happy.”

Jennifer knew that someday Nico would need to have his leg amputated below the knee, Since Nico’s tibia bone connecting his knee and ankle wasn’t fully formed, it meant his ankle didn’t have the support it needed. Her original plan was to have that surgery performed at another facility closer to their home, when she was told they weren’t comfortable operating on his leg due to his heart conditions. Soon after, she and Nico were at CHOC meeting an orthopaedic specialist to discuss a prosthetic for his leg.

“I didn’t know what we were going to do, but during his prosthetic appointment, we learned CHOC would be comfortable performing his surgery, and could schedule it for just a few weeks later! I was thrilled we could do it earlier because I don’t want him to get to a point later on in life when he remembered or missed when he had more of a leg,” Jennifer recalls.

Shortly before his third birthday, Nico underwent surgery to amputate his leg below the knee under the care of Dr. Francois Lalonde, a CHOC Children’s pediatric orthopaedic surgeon.

nico-toy-after-wound-care
In addition to stocking our holiday toy store, donations that pour into our annual holiday toy drive bring joy to patients year round. After one wound care appointment, Nico is surprised with a new toy for being so brave.

After spending just one night in the hospital ―including a checkup with his cardiologist, Dr. Nafiz Kiciman, to make sure his heart looked alright after surgery― Nico was discharged.

“Nico is a brave and courageous young boy with an easy-going personality,” says Dr. Lalonde. “He has demonstrated great resilience and coping skills following surgery and wound care, and is already adapting well following the amputation of his left ankle.”

His doctors told his mom he should take it easy for a few days, but as soon as his cast was removed, he was quickly back to his old habits of climbing on furniture and jumping on pillows.

“I never want my son to have the mentality that he is limited,” Jennifer says. “Kids can sense if their parent is worried or scared, and I didn’t want him to feel like that. He’s too young to feel anxious on his own, so I made sure I didn’t bubble wrap him and let him play like his normal self.”

The importance of pediatric specialists for wound care therapy

The week after surgery, Nico and his mom started coming back to CHOC a few times per week for wound care, where specially-trained pediatric physical therapists would clean and rebandage his leg. In between those appointments, Jennifer cared for the wound at home.

“At his first appointment, he saw a new person walking into the room with all these supplies he had never seen before, and it was a lot for him to take in. He covered his eyes and wiggled around during the appointment,” Jennifer recalls.

To make Nico feel at ease, his physical therapist Sandy started letting him help her care for his wound.

nico-before-and-after-wound-care
Left: Nico was naturally apprehensive during his first wound care appointment, before he realized it didn’t hurt and could even be fun. Right: Nico during a subsequent wound care appointment, where he was rewarded for his bravery with a larger-than-life Mickey Mouse balloon.

“I wanted to be honest with him about what they’re going to do at this appointment, but frame it in a positive way so he knows it’s for his own good and he doesn’t have to be scared. It’s important to explain things in a way that he will understand,” Sandy says. “If you’re honest with the child, they’ll start to trust you. If you say, “this won’t hurt” and it hurts, then you’ve lost their trust.”

Once Nico was involved, he immediately understood that he didn’t have to be scared of wound care, and that it could even be fun.

Now, when Sandy finishes one step, he grabs the next supply that she’ll need. He almost sees it as a game. “Ok Nico, we’re done with this part. What part is next?” Sandy says to him.

nico-during-wound-care-appointment
To help calm Nico’s fears during wound care, his pediatric physical therapist involved him in the process.

These days, before each appointment, when Jennifer asks Nico if he wants to go see Sandy, he squeals and claps with delight.

“I tell him, “Let’s go see Sandy! She’s going to clean your owie and make it feel better.” My positive mentality was contagious for him. I was excited, so he was excited,” Jennifer says. “If the kid sees the parents squeamish during wound care or sees a worried expression on their face, then the kid will be apprehensive. Whenever we come to wound care appointments I make sure I speak to him in a very upbeat, positive way so he feels like physical therapy is fun and not something to be scared of, which helps him to relax. Positive energy is contagious.”

Continuity of care has also helped Nico feel more comfortable.

“It has helped him to have the same one or two physical therapists each time, so it’s a familiar face.”

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Nico’s Star Wars-themed prosthetic.

Once Nico’s leg was fully healed from surgery, he resumed physical therapy, was fitted for a prosthetic, and started walking. In between all of that, he continues to love anything Star Wars, playing Ninja Turtles, coloring and attending pre-Kindergarten classes.

Read FAQs about pediatric wound care at CHOC

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Meet Dr. Kelly Davis

A board-certified physician in pediatrics and sports medicine has recently joined the CHOC Children’s Orthopaedic Institute. Dr. Kelly Davis specializes in sports injuries, injury prevention, concussion management and advanced musculoskeletal ultrasound medicine for children, adolescents and young adults. Among the most common diagnoses she sees include overuse injuries and knee pain in athletes of all ages who play a variety of sports.

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Dr. Kelly Davis, a pediatric sports medicine specialist at CHOC Children’s

Her passion for helping young athletes comes from her own experience growing up playing sports. She played tennis, soccer, basketball, and also swam and water skied. She continues to play competitive tennis today and thanks her mom, a huge tennis enthusiast, for getting her into the sport.

“My mom played in college and has been my coach my whole life. I think what I love about tennis so much is that no matter your age or skill level, there is always someone you can play with and it is a great way to meet new people,” she says.

Dr. Davis completed her undergraduate studies at the University of California, San Diego, followed by medical school at Temple University School of Medicine, in Philadelphia. She completed a pediatric residency at CHOC, and stayed an additional year to serve as chief resident. She completed a fellowship in pediatric primary care sports medicine at Vanderbilt University in Tennessee.

During her time at Vanderbilt University, she served as a team physician for a local high school and for several collegiate teams including football, baseball, cross country, track and field, tennis and soccer. She was also team physician for the Nashville Sounds, a minor league baseball team.

Today, she continues to have the same commitment and enthusiasm for her patients.

“These kids have a certain drive. They’re really motivated and fun to work with,” she explains. “I also know what it’s like to sustain an injury, put in the rehab work and come back to the sport you love.”

Her patient care philosophy is straightforward: She treats each patient and their family as she would want one of her own family members to be treated. As a new mom mom, she says she has gained an added appreciation for her patients’ parents and their questions or concerns.

In her spare time, Dr. Davis loves spending time with her husband and their baby boy. She also enjoys playing soccer and tennis, hiking, camping and exploring the outdoors.

Learn more about sports medicine at CHOC

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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.

scoliosis surgery
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.

scoliosis surgery
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.

Learn about scoliosis services at CHOC now.

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