Life is full of ups and downs – and the occasional curve. For 7 million Americans, that curve is a physical condition.
For more information, visit the Scoliosis Research Society at srs.org.
Scoliosis, often diagnosed in adolescents age 10-18, occurs when the spine abnormally curves from side to side.
At the age of 13, a typical doctor visit turned into a surprising diagnosis for Elizabeth Golden.
“I was expecting things to be normal,” says Golden. “It all happened so fast.”
Her doctor detected an idiopathic, 27-degree “S” curve. In general, 80 percent of scoliosis cases are idiopathic, meaning the cause is unknown. It’s a condition seen across all races.
“The biggest concern is growing teenagers or pre-teens,” says Christopher DeWald, orthopedic surgeon and assistant professor at Rush University Medical Center.
Scoliosis is painless, but each degree makes a difference, especially in children whose spines are growing and developing for years to come. Spines with less than a 30-degree curvature have few problems, unlike patients with larger curves.
A difference in shoulder height, waist asymmetry or rib prominence-one side looks higher when bent forward-are all possible hints of scoliosis. The pattern is often identical, forming a backward S. The upper spine tends to curve to the right while the lower spine curves to the left.
Following the curve
Golden describes her childhood curve as abnormally shaped, which meant ordinary braces weren’t an option. Because she was only 13, her spine was growing. She just had to wait and see if it would continue to curve.
A few months later, X-rays showed the curve had progressed.
“When my curve got to 40 degrees, my doctor said, ‘You’re going to need surgery.’ The decision was scary-there’s a chance of paralysis,” says Golden. Her aunt and grandmother, having had the surgery, influenced her choice to do so.
Scoliosis tends to run in families, but experts haven’t pinpointed the gene. At least 50 percent of those diagnosed have no family history, according to DeWald, meaning the genetic inheritance is still a puzzle.
Adolescent idiopathic scoliosis occurs 75-80 percent of the time in girls, “probably something with girls reaching a growth spurt sooner than boys, but it could be genetic,” says DeWald. “We’re more concerned about girls who haven’t started their periods and already have a significant curve.”
Scoliosis treatments include observation, bracing or surgery. It has come a long way since Joan Cusack’s brace in the 1980s flick “Sixteen Candles.”
“If you look back 20 years, patients were in the hospital for three to four weeks and a body cast for up to nine months. Oftentimes they didn’t return to sport activities,” says DeWald. “Today our patients are out in four to five days and they’re playing competitive sports in six to nine months, excluding contact sports like football and gymnastics.”
After the successful surgery, Golden stayed home for two months. Sitting straight as a board, she took exams at her dining room table and homework sheets were pushed in front of her. An in-home tutor kept her on track in school.
Being an active kid, Golden worried about not playing her favorite sports.
“I listed every sport I wanted to do and my doctor checked off when I’d be able to do each one,” she recalls. More extreme sports like water skiing, bungee jumping and sky diving are excluded.
The surgery left her exhausted and physical rehabilitation took a while, so she took a tennis season off.
She decided to have the surgery in the spring. That next winter she was playing squash.
Looking back, Golden thinks she gained confidence because she successfully dealt with a physical abnormality in the awkward middle school stage.
Throughout the diagnosis, surgery and recovery, she wrote When Life Throws You a Curve, chronicling the journey.
Today, Golden is a spokesperson for the National Scoliosis Foundation. She hopes people become more aware of the condition as well as cutbacks on school screenings, which are no longer mandated in Illinois. That means pediatricians should be checking for scoliosis in children age 7 and up during routine examinations.
The American Academy of Orthopaedic Surgeons recommends that health officials screen girls twice (at age 10 and 12) and boys once (at age 13 or 14).
The case for screenings
Only 26 states mandate school scoliosis screenings. Illinois isn’t one of them. Georgia does. From the age of 10 to 14, both boys and girls are screened twice.
“It’s 30 seconds for each student, and there’s a variety of ways for it to be accomplished,” says Mary Lou Oliver, Scoliosis Screening Program coordinator at Children’s Healthcare of Atlanta.
Georgia has a two-step process. First, health officials teach volunteers or coaches how to do the screening. Using a form, the schools work with the public health department to do a second screening on kids who possibly have scoliosis.
“We expect to have within that screening program specificity and sensitivity so you get the kids that are positive for scoliosis without getting too many false positives,” Oliver says.
Screenings can also find other things like impetigo, moles, MRSA or fungal infections, according to Oliver.
Illinois only requires physical examinations before a child enters sixth and ninth grade.
“You’re going to miss when this is developing in adolescent growth spurts,” says Oliver of the Illinois process. “Kids need to be screened annually.”
Elizabeth Espindola is a former Chicago Parent intern.