Most parents are familiar with the routine. At their children’s annual checkup, the doctor has the kids bend and touch their toes to gauge how their spines are developing. More often than not, everything looks fine.
But that’s not what happened during 7-year-old Tori Mattison’s visit.
“When she touched her toes, a hump came out of her back,” says her mother, Kathleen McPherson of Gaithersburg. “And the doctor said, ‘Yup, she’s got scoliosis,’ ” a sideways curvature of the spine.
For a few years, the doctor simply monitored Tori’s spine. But by the time she was 10, the curve had become so pronounced that she needed to wear a brace at night to try to stop it from worsening as she grew.
“At first, she was pretty good about it,” her mother recalls. “But then she stopped wearing it when she started developing breasts.”
The problem, Tori says, was “it felt like sleeping in concrete. And sometimes it would push into my breasts, which was very uncomfortable. It was very hard to sleep that way.”
Because she wasn’t wearing the brace, the curvature in her spine became more pronounced. Eventually, Tori’s right shoulder jutted way out to the right, and her left hip jutted out to the left.
“She was in a lot of pain all the time,” her mother says. “Then there was the teasing and bullying at school.” It’s hard enough for adolescents to feel comfortable in their changing bodies, she adds, without being mocked for a spinal deformity.
By age 14, Tori’s spine had deteriorated to the point where she required surgery. In January, rods and pins were surgically inserted into her spine to straighten it.
“She was out of school for three weeks and couldn’t do any physical exercise for six months while her body got used to where [the vertebrae] were now located,” McPherson says. “The cautionary tale is that she really should have worn the brace.”
A musculoskeletal disorder that’s usually mild but can lead to spinal deformities and disabilities in severe cases, scoliosis occurs most commonly during adolescence, especially in girls between ages 10 and 15, and in older adults due to age-related degeneration of the spine. An estimated 6 million people in the U.S. have it, according to the National Scoliosis Foundation, and though mild scoliosis occurs in both genders, girls and women are eight times more likely to develop a curvature that’s severe enough to require treatment. The disorder often runs in families, as it did in Tori’s (her paternal great-grandmother had it).
“We’ve always known there’s a genetic predisposition to scoliosis,” says Dr. David Levin, an orthopaedic spine surgeon at The Orthopaedic Center in Rockville. “But researchers are starting to identify certain genes that indicate who’s at risk for progression of the disorder.”
Scoliosis also can occur randomly. Doctors refer to it as “idiopathic scoliosis.”
If doctors suspect the disorder during a physical exam, they generally order an X-ray of the spine to confirm it. The severity or angle of the curvature, which is usually C- or S-shaped, is then described in degrees, which can inform treatment. In kids, if the curvature reaches 25 degrees, a brace may be prescribed and fitted to the individual child.
“Over the years, bracing has gotten better. Lighter-weight materials are now used, which makes breathing more comfortable,” Levin says.
The first six months are critical for gauging compliance in wearing a brace. A recent study at the University of Alberta in Canada examined brace-wearing habits among 15 teens with idiopathic scoliosis. It found that after four months, most had settled into a routine of wearing the brace for a set amount of time each day—and the more consistently they wore the brace at the prescribed tightness, the better the outcome.
If the curvature is allowed to reach 50 degrees, however, surgery is often recommended. Over the years, Tori’s curvature progressed from 9 degrees to 53 degrees. The bigger the curve and the more growing a child has to do, the more likely doctors will pursue aggressive treatment to stop its progression, Levin says.
In older adults, scoliosis is more likely to occur in the lumbar spine, or lower back, than in the thoracic spine, which is the middle of the back where the ribs attach. With adults in their 60s to 80s, scoliosis is often accompanied by and related to disc degeneration, disc herniation and/or spinal stenosis (a narrowing of the open spaces within the spine, which can put pressure on the spinal cord and nerve roots), says Dr. Jay Khanna, a spine surgeon at Suburban Hospital in Bethesda and an associate professor of orthopaedic surgery and biomedical engineering at Johns Hopkins University. As a result, these older adults may experience back pain, leg pain and weakness when they walk, Khanna says.
“If scoliosis causes the spine to rotate or tilt over to one side, the muscles, ligaments and joints of the spine will be asymmetrically stressed, and this can result in substantial back pain,” Khanna says.
In adults, anti-inflammatory medications, deep tissue massage, epidural injections of corticosteroid medications to relieve pain and inflammation, and physical therapy are often used to alleviate symptoms. (Adults with scoliosis aren’t treated with braces since their spines are fully developed.)
“A lot of people tend to be weak in the core and back muscles that control their posture,” says Devina Raybuck, a physical therapist at the MedStar National Rehabilitation Network in Bethesda. “Pain relief generally happens if they can learn to correct their posture.”