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.

scoliosis
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.

scoliosis
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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Kids and Spine Issues

Girl_at_the_beachDEFINING THE CURVE

“If you look at the spine from the front and the back, it should be straight. When scoliosis is present, there is always a sideways [“S” or “C”-shaped curvature] shifting of the spine from the right or left,” says Dr. Aminian. The cause of scoliosis is unknown, but scientists have recently identified genetic markers that are contributing to individuals with it. The condition is more prevalent in girls during their growth spurt years. “Usually, the majority of cases don’t become progressive, but a small subset do and might require surgery in the future,” says Dr. Aminian.

SCREEN TEST

“California is one of a number of states that requires screening students for scoliosis in schools. It’s important that children get screened with their school nurse or their pediatrician,” says Dr. Aminian. The Adam’s Forward Bend Test checks for scoliosis by having the child lean forward and looking at rib asymmetry. Others signs can be shoulder height (when one shoulder is higher than the other), uneven hips and waistline asymmetry.

BRACE YOURSELF

“If we catch the scoliosis at younger ages and smaller curves, we’re able to control it with a bracing program,” says Dr. Aminian. The more often the customized brace is worn, the better. Some kids may feel self-conscious wearing it at first, but CHOC’s counseling program helps them cope. “We work with them to increase the number of hours they wear it at school. We stress they wear it at night,” says Dr. Aminian. And they can even sleep in it.

STRAIGHTEN WITH SURGERY

“Surgery is reserved for curves that are major that we think will cause problems in the future, including breathing, balance and pain,” says Dr. Aminian. “Luckily, it’s a standardized surgery. It’s very safe and effective.”

FAST FACTS

  • Grades when girls should be evaluated for scoliosis: 5th and 6th Grade
  • Grades when boys should be evaluated for scoliosis: 7th and 8th Grade
  • Percentage of the population that have a small (insignificant) curve in their spine: 10 %

View the full feature on Kids and Spine Issues

Dr. Aminian
Dr. Afshin Aminian
CHOC Children’s Orthopaedic Institute

PHYSICIAN FOCUS: DR. AFSHIN AMINIAN

Dr. Aminian is the director of the CHOC Children’s Orthopaedic Institute. He completed his general surgery internship  and orthopaedic surgery residency at Northwestern Memorial Hospital and is affiliated with the Pediatric Orthopaedic Society of North America, the American Academy of Orthopaedic Surgery and the Scoliosis Research Society.

Dr. Aminian’s philosophy of care: “I try to put myself in the parents’ shoes and explain to them in the most common terms what we’re doing and why we’re doing it, reminding them of the hospital’s capabilities.”

EDUCATION:
Washington University School of Medicine

BOARD CERTIFICATIONS:
Orthopaedic Surgery

More about Dr. Aminian | More about the CHOC Children’s Orthopaedic Institute

This article was featured in the Orange County Register on December 23 , 2013 and was written by Shaleek Wilson.