Like many gawky, growing teens, 13-year-old Martha Hunt felt insecure about her body. As an aspiring model, too, she was particularly critical of what she saw as flaws — one shoulder blade jutting out, one side of her waist dipping in further than the other. “At that age, you just want to feel normal,” says Hunt, now a 26-year-old Victoria’s Secret model.
But Hunt was anything but. She signed a modeling contract in middle school and by high school was traveling regularly from North Carolina to New York City for casting calls. All the while, her body became increasingly off-kilter, resulting in back pain and deeper insecurities.
“Clients were pointing it out to my agency at photo shoots,” Hunt says. “I remember feeling like I had my own secret challenge apart from other teens.”
That challenge was adolescent idiopathic scoliosis, a condition that causes the spine to form like a “C” or an “S” shape instead of a straight line. In Hunt’s and some other cases, the spinal bones become twisted too. The condition affects up to 5 percent of the population and is more prevalent and likely to worsen over time among girls, according to a 2013 study in the Journal of Children’s Orthopaedics.
While adults and infants can have scoliosis, it usually manifests during puberty. “If you’re not growing, your curve isn’t growing, typically,” says Dr. Lori Karol, a professor in the University of Texas Southwestern Medical Center’s Department of Orthopaedic Surgery who studies and treats the condition.
Doctors don’t know what causes this type of scoliosis (hence the term “idiopathic”), but they do know what doesn’t: slouching, wearing a heavy backpack, playing sports and other behavioral factors, Karol says. Rather, it seems to be partially genetic.
If scoliosis isn’t treated or monitored throughout a child’s growth spurt, it can worsen and lead to back pain and respiratory problems. “If you think about it, your spine is linked to your ribs and your ribs protect your lungs,” Karol explains.
Fortunately, the condition usually doesn’t become that serious. “You hear ‘scoliosis,’ and the immediate thing you do is panic, and really, it’s fairly common,” Karol says. “And mild to moderate curves have very little impact on a teenager’s life.”
Diagnosing Scoliosis
While many states used to require schools to screen students for scoliosis, that changed in 2004 when the U.S. Preventive Services Task Force recommended against regular screenings, concluding that there wasn’t enough good evidence that such screenings helped detect the condition early. The task force also concluded that cases serious enough to need treatment were likely to be detected without screenings, and that mild cases found during routine screenings could lead to unnecessary doctor visits and brace use.
However, the Scoliosis Research Society thinks the group’s recommendation was “a bad move,” since it’s difficult to conduct the type of high-quality research — namely through randomized controlled trials — the task force values, says Dr. David Polly Jr., the organization’s president and a professor of orthopaedic surgery at the University of Minnesota Medical School. Plus, the screening is low-risk and low-cost, according to a position statement from four medical organizations.
Since the task force’s recommendation, one major study, published in 2013 in the New England Journal of Medicine, has shown that braces can be effective in preventing the need for surgery. “Now there’s a huge move afoot … to get the United States Preventive Services Task Force to reconsider their recommendations on screening for scoliosis, and there’s a big move afoot to get primary specialties to make sure they know when to examine for scoliosis,” says study author Dr. Stuart L. Weinstein, chair and professor of orthopaedic surgery and pediatrics at the University of Iowa.
In the meantime, parents can keep their eyes out for the condition during their children’s growth spurts by looking at their ribs while they reach toward their toes. “If one side is higher than the other, that’s what we train people to look for to say, ‘Hmm, this ought to be checked out,'” says Polly, who recommends searching the Scoliosis Research Society’s database to find a local doctor who is qualified to diagnose and treat the condition.
Choosing a Treatment
The treatment that’s best for your child depends on the severity of the curve, the child’s lifestyle, stage of growth and other considerations. “Each child is a little different,” Karol says. Here’s what to know about some of the options before moving forward:
Watch and wait. “There are many children who don’t require anything more than observation,” Karol says. For example, if a 13-year-old girl seems to have stopped growing, has had her periods for a few years and has a mild curve, it’s unlikely the condition will get worse or limit her life in a significant way. “The children aren’t fragile,” says Karol, who tells parents that kids with scoliosis can still play sports, wear backpacks and otherwise be kids. “The spines have curves, but the bones themselves are strong.”
But being too passive can cause problems. The first specialist Hunt visited, for example, didn’t recommend a brace. “There was no point in suggesting a brace because there was no way to know it could help, and it would be annoying to wear every day,” she remembers him telling her. But three years later, Hunt wound up in surgery because the condition had progressed so severely. “Be aware of all the treatment options and how much they can improve your quality of living,” she suggests.
Brace. For more moderate curves, a brace is a standard, noninvasive, often effective, option. “It doesn’t work for everybody but … the more they wear it, the better it works,” Polly says. Weinstein’s study, for example, showed that kids had to wear a brace for at least 13 hours a day to be effective. Doctors can help improve compliance by monitoring kids’ use with a sensor in their brace and giving them feedback about their habits, according to a study published this year and led by Karol.
But braces have their downsides, too. “It’s not just, ‘Take two [pills] and call me in the morning,'” Weinstein says. “It’s a several-year process.” They can also be a social and psychological burden, says Leah Stoltz, a 23-year-old advertising professional in New York City who wore a brace that looked like “a big plastic corset” religiously for two and a half years before undergoing surgery at age 13. “If someone bumped into me, I said, ‘Please don’t tell anyone — please, please, please.’ I was really ashamed of it,” says Stolz, who went on to found Curvy Girls, an international peer support group for girls with scoliosis. “One of the best treatments in scoliosis is having support to give you tips along the way,” she says.
Surgery. Spinal fusion surgery is typically a last resort, but an effective option for severe curves. The procedure involves rods, screws or other tools to straighten the spine, which is then covered with small pieces of bone (from a cadaver, the patient or a combination) that fuse the spine together into a more upright position. While it’s a major surgery, “we have really good data that we get good curve correction, we have … relatively low complication rates and that the fusion works to stop curve progression,” says Polly, noting that success depends in part on where on the spine the surgery is conducted.
For Stoltz, the surgery corrected her curves and allowed her to get back to ballet after nine months. Hunt was on the Paris runway within a few months, although she was still in pain from the surgery. “It was not fun walking in sky-high heels,” she admits. On the upside, she became 2 inches taller. “My scoliosis prevents me from running and doing back flips, but other than that, I can do almost anything,” she says, noting that core- and back-strengthening exercises continue to be important ways to cope with pain.
Exercise therapy. Stoltz wishes the Schroth method — an emerging form of nonsurgical treatment developed by a physical therapist who treats scoliosis that involves stretching, strengthening and breathing techniques — had been around when she was diagnosed. According to patients she meets through her nonprofit, “girls feel more empowered, like they have more control over their bodies, which I definitely did not feel when I was diagnosed,” Stoltz says. While some results are promising, exercise-based treatments are still gaining traction in the medical community, Polly cautions. “I don’t think there’s any harm to the exercise strategy, but it’s not proven to work yet,” he says.
Genetic interventions. At the University of Texas Southwestern Medical Center, researchers are studying the genes linked to scoliosis. If they can figure out why such genes lead to the condition, that may inform future therapies, Karol says. “This may lead to treatments … we can’t even think of right now,” she says. “The future is very bright.”
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My Child Has Scoliosis. Now What? originally appeared on usnews.com
