Teen offers support and understanding to other young girls with scoliosis

by: OUTLOOK PHOTO: JIM CLARK - Rebecca Mobley, 13, underwent spinal fusion surgery in October for scoliosis. She was told her physical activity would be limited for nearly a year after her surgery, but her recovery has progressed more quickly than expected and shes hoping for a full medical release later this month. Rebecca plays first base and pitches for an Inner SE Pride Little League team, which won the Oregon State Little League Championship a year ago.

In the spring of 2011, then 11-year-old Rebecca Mobley was practicing how to slide into base on the softball field. She landed hard and awkwardly on her tailbone and knew she would feel the pain of her misstep afterward.

But the expected soreness didn’t go away. And over time, it began affecting her performance on the pitcher’s mound or at first base.

“I was swinging my bat differently and throwing differently, but I didn’t know why,” Rebecca said. “The coaches kept saying, ‘Why are you doing that?’ I tried to throw across my body like I was taught, but I couldn’t do it.”

Chiropractic adjustments alleviated some of Rebecca’s discomfort, but in June of last year, she bent over to tie her shoes and her mom, Sherilynn, noticed a “hump” on Rebecca’s right shoulder blade.

“I remember mom saying, ‘What is wrong with your back?’” Rebecca said. “She took a picture so I could see it and I thought, ‘That’s weird, I wonder what that is.’ It wasn’t anything I expected to see.”

X-rays done by Rebecca’s pediatrician in late July revealed adolescent idiopathic scoliosis. What followed was an odyssey for Rebecca and her family, one with a positive medical outcome, and equally as important to Rebecca, an opportunity to support other young girls with the same condition.

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by: OUTLOOK PHOTO: JIM CLARK - An eighth-grader at Centennial Middle School, Rebecca plays flute in the schools band and is an active member of her Girl Scout troop. She hopes to own a bakery one day, after learning how to decorate cakes from her grandmother and mom.

Scoliosis is a curvature of the spine, where the bone grows into an “S” or “C” shape. It affects 2 to 3 percent of the population, or an estimated 6 million people, according the National Scoliosis Foundation, and knows no age or gender barrier. It is eight times more likely to impact young girls between the ages of 10 and 15, but can be present at birth as a result of congenital or neurological disorders. Scoliosis is often referred to “idiopathic” because in most cases there is no known cause.

Screening for scoliosis used to be routinely done at school. Remember bending forward at the waist, while a school nurse ran her hand up your back? Physicians still employ the Adam’s Forward Bend Test for initial assessment but request X-rays if an anomaly in the spine is suspected or discovered.

To determine the severity of scoliosis, doctors measure the degree of the spine’s curve, both in the thoracic (upper) region and lumbar (lower) region. They often will take a “wait and see” attitude for adolescents with a 0-20 degree curve, reevaluating their patient sometimes every six months. Bracing is recommended if the curve is between 20-40 degrees, while a measurement greater than 40 degrees indicates surgery as the only option for correction.

The spine’s curve can cause the bones to rotate, making one shoulder, shoulder blade or hip appear higher than the other. Scoliosis also can force the spine to curve side-to-side or front-to-back, the latter producing what is commonly called a dowager’s hump in the back.

But scoliosis also can impact quality of life, with limited activity, pain and reduced respiratory function. And since the condition is most prevalent during times of rapid growth in a teen or tween, diagnosis and treatment, particularly if a brace is necessary, comes at a time when self-esteem is already fragile.

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by: CONTRIBUTED PHOTO - X-rays of Rebeccas spine, taken in September at Shriners Hospital for Children, revealed an extreme curve, uncorrectable through bracing.

Rebecca’s X-rays taken last July were measured as a 35/20 degree curve in the upper and lower spine respectively. Sherilynn began reading online and learned that Rebecca’s curve range was commonly treated with a brace.

In September, Rebecca was seen and X-rayed a second time by a specialist at Shriners Hospital for Children. Sherilynn said she was expecting to be counseled on getting Rebecca fitted for a brace. The doctor’s news, however, was a complete surprise.

“When the doctor came in, he said, ‘Rebecca has an extreme curve, and your only choice is surgery,’” Sherilynn recalled. “He also said he was booked out for three months, but he wanted to do the surgery as soon as he had an opening in his schedule. It was so overwhelming. We thought we were going in to be fit for a brace. But the next thing we knew, there was a physical therapist showing Rebecca exercises to do before surgery, a nutritionist. It was not at all what we expected.”

Rebecca’s spine was measured at 54 degrees thoracic and 35 degrees lumbar. A spinal fusion was the recommended procedure.

by: CONTRIBUTED PHOTO - Two titanium rods and 16 screws were fused to Rebeccas spine in October, to realign the bones in a straight I.

In the course of researching spinal fusion treatment for scoliosis, Sherilynn stumbled across a website called Curvy Girls. The site was essentially a members-only online support group for young girls with scoliosis. Members have access to a closed discussion forum, resources for medical information, merchandise and even clothing tips and ideas for those wearing braces. But Sherilynn also discovered the organization provided contact information for teen volunteers in various states around the U.S. who led local support groups.

Sherilynn showed the site to Rebecca, who promptly noticed there was no leader for groups in Oregon or Washington. Rebecca joined Curvy Girls and found a harbor of understanding among her peers, who were struggling to adjust to scoliosis treatment the same as she was. Earlier this year, Rebecca volunteered to be a leader for groups in the Northwest.

“I knew there were girls out there who didn’t have what I had with Curvy Girls,” she said. “I wanted to help them. I wanted them to have someone to talk to who knows what they’re going through.”

In February, Rebecca held her first meeting. Three girls attended, one an 8-year-old from Eugene. In March, six girls were present, and 12 are scheduled to attend the next gathering April 19.

For Rebecca, it’s all about being there for girls who feel isolated or different due to something out of their control.

by: OUTLOOK PHOTO: JIM CLARK - Sherilynn Mobley (left) stumbled across the Curvy Girls website while researching her daughter's impending spinal fusion surgery last fall. Curvy Girls is a global support network for young girls coping with the treatment and rehabilitation of Scoliosis.

“The purpose of the meetings is so they can have someplace where they can share what they’re going through with other people who understand,” she said. “People say they understand how hard it is to live with a brace or have surgery, but they really don’t. I want girls to have someone to talk to who knows what they’re going through.”

On Oct. 14, Rebecca underwent spinal fusion surgery at Shriners Hospital for Children. Recovery was rough, she said. She was unable to lift more than 8 pounds (read: a backpack) and had to rely on friends to carry things for her after returning to school in November. She was told to expect only limited allowances for physical movement for almost a year post-surgery, but has progressed more quickly than expected, and is hopeful for a full medical release in mid-April.

Two titanium rods and 16 screws now hold Rebecca’s once-S-shaped spine in a normal, straight “I.” She’s not pitching yet, but she is tossing the ball around and did participate in her Girl Scout troop’s annual cookie sale.

The scar running from the base of Rebecca’s neck to her tailbone epitomizes her favorite saying that “normal will never be beautiful.” It may be a reminder of what was, but does not predict what will be for her.

“People think a scar is the worst thing you can have,” she said. “I think it’s the best because it means you’ve won the battle.”

by: OUTLOOK PHOTO: JIM CLARK - Sherilynn Mobley (left) stumbled across the Curvy Girls website while researching her daughter's impending spinal fusion surgery last fall. Curvy Girls is a global support network for young girls coping with the treatment and rehabilitation of Scoliosis.

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