I was 19 years old, sitting in an examining room at Student Health feeling miserable, trying to focus on the chest x-rays on the light board, listening to the resident confirming my pneumonia.
“By the way,” he said as I stood to go, ready to trudge back to my dorm and crawl into bed, “You know that you have scoliosis, don’t you?”
Adolescent Idiopathic Scoliosis (AIS) is the development of a lateral, or side-to-side curvature of the spine somewhere around the onset of puberty among otherwise healthy children. It is usually, though not always, hereditary. A normal, healthy spine naturally curves front to back in order to balance the upper body over the hips. But a scoliotic spine may take a “C” shape or even an “S” shape affecting the upper back (thoracic) or lower back (lumbar) or both (thoracolumbar). The spine also may rotate, or twist, taking the curve to three dimensions.
Scoliosis is measured in terms of the degree of curvature. Viewed from the back, a normal spine is the baseline, measuring zero degrees. If a spine were horizontal, or parallel to the floor, it would measure 90 degrees. Scoliosis is diagnosed if an x-ray shows the spine to measure more than 10 degrees.
The appearance of AIS is almost always painless and gradual, affecting girls far more than boys. A significant curve can develop — quickly — with neither parent nor child having any awareness that something is not quite right. According to Dennis Crandall, M.D., of the Sonoran Spine Center in Phoenix and Mesa, a growth spurt during the teenage years can cause a spine to curve as much as one to two degrees per month.
Crandall often finds that parents first notice something is different about their child at the start of bathing suit season in the spring. After a winter season of wearing warmer clothes, which reveal less of the body, “the parents really don’t have a chance to see their (children’s) backs; it is only around summer time that their mothers or fathers may say, ‘Wait a minute, stop, let me see your back.’ Then they notice that there is some asymmetry . . . a hump on one side.”
It doesn’t help that the onset of AIS occurs during the self-conscious years between 10 and 16, when adolescents begin dressing and bathing in privacy. School screenings are not required by law in Arizona, but take place at the discretion of the school district. Pediatricians screen for scoliosis, but a curve can develop and advance significantly between yearly well-check visits.
Early detection is important because sometimes treatment can slow the progression of a curve. Treatment options for AIS depend on the degree of the curve and the maturity of the spine, that is, whether or not growth is complete. Treatment also depends on the location of the curve and how much it is affecting the patient. All of these factors should be considered on an individual basis. Generally speaking, there are three options for treatment.
Observation: For curves less than 25 degrees. X-rays are monitored closely. Exercises to increase core body strength are often prescribed by a physical therapist. Margaret Powell, D.C., of the Powell Clinic in Scottsdale, stresses the importance of keeping the back strong. Powell suggests that chiropractic treatment can help to affect the mobility of the vertebrae.
Bracing: For curves over 25 degrees, where the spine is still growing. Although bracing is not a cure, it can keep some curves from progressing. Carol Lytle, president of the local chapter of the Scoliosis Association, remembers when her daughter Jennifer, now 20, was fitted with a brace, which covered her from chest to hips for 16 hours a day. Jennifer wore the brace after school until the next morning every day from the time she was 10 until she turned 14.
“The only way we got through it was with humor,” says Lytle. “You couldn’t be serious about it all of the time, because it would break your heart.”
Those treated with a brace need plenty of emotional support, says Lytle, who suggests starting with close friends.
“Let your best friends try it on,” Lytle says. “They are going to have a little bit more respect for that friend that they have to go through this.”
According to Crandall, around two thirds of patients who wear a brace show improvement, but the rest do not, sometimes requiring surgery, which was true in Jennifer Lytle’s case.
Surgery: Most often reserved for curves over 45 degrees, when the spine is still growing, and as a last resort. One of the most complex pediatric procedures, scoliosis surgery involves a four- to five-hour operation where metal rods and screws hold the spine in place while bone taken from the pelvis fuses vertebrae together. Hospitalization is from four to seven days, and activities are restricted for three to 12 months.
“The brace thing, it is tough, but surgery is a whole new world,” says Lytle. Phoenix Children’s Hospital offers tours and preparation for the surgery in their spinal fusion clinic, which Lytle says helped not only Jennifer, but the whole family, to understand the process.
After the surgery, Carol and Jennifer Lytle wanted to try to help other families to deal with scoliosis. If you’re facing a diagnosis of scoliosis within your family, Lytle says, contact the association. “You’re not alone. We have been through it all. We can give families the tools to get through it.”
Lytle, it turns out, has an S-curve herself and has been down a similar road to mine as an adult. It becomes increasingly hard to ignore your scoliosis as you age. Depending on the location of the curve, some muscles along the spine can weaken and atrophy while others compensate and become strong and overdeveloped. The possibility of unexpected muscle spasm increases. Posture can slowly worsen.
In Lytle’s case, chiropractic adjustments have helped. For me, physical therapy, pilates, yoga and strength training to keep muscles strong and supportive have become necessary in order to simply sit, write, work or travel. Living with scoliosis has been, and continues to be, a lifelong challenge.
Signs of scoliosis
Parents should be aware of the following signs, and begin observing children well before puberty, according to recommendations from the Mayo Clinic:
- uneven shoulders (one clue: a bathing suit strap keeps falling down, on the same shoulder every time)
- prominent shoulder blade or shoulder blades
- uneven waist
- elevated hips
- leaning to one side
Where to find help
Note the “i” before scoliosis in the web address. Offers personal stories, treatment options, research news and information on finding doctors.
The Scoliosis Association of Greater Phoenix, Chapter 13 meets once a month for support and presents guest speakers from the medical profession. 480-839-9822 or Carol Lytle.