Living With Scoliosis

doctor showing spine model to a mother and her son

by Vernon Hiroe, Shriners Children’s Hawaii

Scoliosis is an abnormal or sideways curvature of the spine that presents most often during childhood or early adolescence. Although it can affect people of any age, it is the most common spinal deformity in children, affecting about 6-9 million people in the U.S. In most cases, the cause is unknown and it affects both boys and girls equally. However, girls are 8 times more likely than boys to develop severe scoliosis, where the spine curves more than 50 degrees. This is not just a cosmetic issue as it can lead to serious health concerns if left untreated.

Signs and symptoms of scoliosis include:

  • Top of shoulders are uneven
  • One shoulder blade protrudes outward more than the other
  • One hip appears higher than the other
  • One side of the rib cage appears higher than the other while bending forward
doctor assessing the spine of a young patient
Scoliosis screening is a routine part of physical exams during well-child visits to the pediatrician.

It isnʻt known what causes the most common form of scoliosis (idiopathic), but it is often hereditary. Since it can be difficult to notice the symptoms in its early stages, it is important for your child to participate in school health screenings and visit their pediatrician regularly. X-rays are used to evaluate and measure the curvature of the spine, which your doctor can use to determine the severity of the curve and possible treatments, which include:

Mild curve: Your doctor may recommend regular monitoring and observation as your childʻs bones continue to grow.

Moderate curve: Bracing is typically recommended to slow or stop the curve from progressing. This usually involves creating a custom-fitted brace that your child wears every day under their clothes.

Severe curve: Depending on your childʻs age and the location and severity of the curve, your doctor may recommend surgery, including spine fusion or the insertion of an expandable rod that is adjusted as your child grows. Severe scoliosis often results in increased back pain and breathing problems and must be treated promptly.

No matter the severity, regular exercise helps strengthen muscles and keeps bones strong. Your doctor may prescribe physical therapy whether or not your child has surgery and they will be taught exercises specifically designed for scoliosis patients. Your child can also join support groups with other keiki with to help answer any questions about treatment expectations and living successfully with scoliosis.

doctor reviewing x-ray with patient
X-rays help to accurately measure and monitor the curve of the spine over time.

Mariana’s Story: Coming Back Stronger From Scoliosis

“In the dictionary, scoliosis means an abnormal lateral curve of the spine. For me, it was something I learned to live with,” said Mariana, a 14-year-old middle school student from Pearl City. “In kindergarten, I was diagnosed with scoliosis. As I grew older, my spine curve progressed from “watch and wait” status to frequent appointments for x-rays and a back brace. It was physically and emotionally painful to wear the brace. I just wanted to do cartwheels, handstands, and swim like a mermaid. Physical therapy at Shriners Children’s Hawaii helped me manage the pain, but my feet and legs would feel tingly, and it was impossible to take full, deep breaths. I felt broken and different.”

By the time Mariana entered the 7th grade, her spine curve had progressed well into 80 degree territory, causing a tingling in her nerves, numbness and intense back pain, which affected her ability to participate in her most cherished activity – swimming. “I remember after my 13th birthday dinner, my back was in so much pain that I had a hard time walking from the restaurant back to the car,” she said. At that point, her care team at Shriners Childrenʻs Hawaii, including her doctor and physical therapist, recommended surgery. “Unlike my parents, the idea of spinal fusion surgery didn’t scare me.  I just wanted relief from the constant pain and the chance to have a normal body. When it was time for the surgery, I closed my eyes, said a prayer and trusted that God would be with me. When I opened my eyes again, more than 6 hours had passed. The doctors and nurses were amazed that I had absolutely no complications. A week later, I met all of my goals to go home, but was sad to leave because I was going to miss everyone that took such good care of me.”

Now in 8th grade and preparing to become a high school freshman this Fall, Mariana feels so blessed to be able to do normal activities again. Remarkably, only a month after surgery, she returned to volunteering in her church, and within 2 months, she was back in school full swing. And because she grew two inches as a result of her spine fusion surgery, she takes pride in being almost as tall as her parents and jokes that she “looks up” to her older brother, both literally and figuratively.

“I never thought that scoliosis would help bring me a new plan and a new purpose for my life!” she said. “This past summer, I was able to attend my church’s Youth Leadership camp and became a junior leader. And I got to represent Hawaii as Standard Bearer for the Shriners Children’s Open in Las Vegas!”

“Mahalo Shriners Children’s Hawaii for inspiring me to love and care for others!”

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