What scoliosis feels like, and how to ease pain when it flares up
I still remember grimacing at my back X-ray at age 13. My spine looked like a road curving around an invisible mountain. How could this be my body?
The doctor called my condition “scoliosis.” I didn’t tell anyone at school about it and hoped my clothes hid it well.
I learned later that I was among the 2 to 3 percent of people with scoliosis, according to the National Scoliosis Foundation. About 3 million scoliosis cases are diagnosed in the United States every year, generally in children ages 10 to 12, according to Johns Hopkins Medicine. Girls and women are more likely than boys and men to suffer from scoliosis. It’s not clear why.
While some of us have had curvy spines since childhood, adults can develop scoliosis that gets progressively worse over time as a result of wear and tear on the spine. “As we have more people that age and become elderly, then adult degenerative scoliosis will absolutely be more common,” said Akhil Chhatre, director of spine rehabilitation at Johns Hopkins Medicine in Baltimore.
What is scoliosis?
X-rays like the one I had as a teenager show the shape of the spine and asymmetries that form around it. Doctors diagnose scoliosis when a spinal curvature “measures 10 degrees or greater on an X-ray,” according to Johns Hopkins Medicine. Scoliosis curves are broadly characterized as “S” or “C” shapes, but each person’s spine is unique, as is the way their body compensates.
Physicians may identify a problem during routine exams. Often, scoliosis is accompanied by such clues as unevenness in the shoulders, waist or leg length, according to the Cleveland Clinic.
Physical trauma such as a fracture or arthritis of the spine can lead to scoliosis as an adult, Chhatre said.
But the Mayo Clinic and other experts say the cause of childhood scoliosis is often unknown, though it may run in families.
Adolescents with scoliosis are often most concerned with how it affects their appearance, said Sanja Schreiber, the director of a scoliosis physiotherapy clinic called Curvy Spine Inc. in Edmonton, Alberta. Certainly I thought along these lines.
Many teenagers don’t experience pain because of their scoliosis, Schreiber said, although I have memories of feeling sore from sitting in classroom chairs.
In adulthood, especially in older adults, scoliosis can cause pain, arthritis, pinched nerves and even walking or breathing difficulties, Chhatre said.
In severe cases, the spine can twist into one of the lungs, squeezing it “like a towel with water,” said Santhosh Thomas, a staff physician at the Center for Spine Health at the Cleveland Clinic. This can lead to limited capacity for heavy exercise or for standing for long periods, and such severe cases may require surgery.
With more mild curves, sometimes there’s no pain, but even minimal curvature “can manifest with symptoms such as pain or discomfort or soreness,” Chhatre said.
I know all too well that years of sitting at a computer all day with less than ideal posture has an effect on the muscles surrounding my spine. Stiffness and soreness, especially in my neck and around the apex
of my curve, creep in periodically, reminding me to stretch and stand up or take a walk.
How is scoliosis treated?
When the angle of the spinal curve is less than 20 degrees, scoliosis is often considered mild enough to go without treatment.
Children and adults with curvatures over about 40 to 50 degrees are candidates for surgery, which often involves straightening the spine using steel rods and comes with risks including blood loss, inflammation and nerve injury. In recent years, less invasive surgical techniques have been developed involving smaller incisions and faster recovery.
A patient’s age, health and expectations all play into the decision of whether to operate, Thomas said. “If a patient can function without much pain, then there is no reason to operate on or correct the deformity,” he said. It’s hard to put a number on what percentage of patients will need surgery, he said, but some 38,000 undergo spinal fusion surgery each year, according to the American Association of Neurological Surgeons.
For kids in the “moderate” category of curves, as I was, doctors often recommend wearing a back brace until they stop growing to prevent the curve from worsening and possibly slightly improve it. But at 13, I was stubborn and didn’t want to wear a brace.
My resistance didn’t surprise Thomas. “It’s very hard to tell young adults to put a brace on because it’s cosmetically challenging,” he said.
Physical therapy options
Physical therapists can put together a set of exercises targeting the body’s symmetry, balance and posture.
For example, a specialized scoliosis therapy called the Schroth method uses individually tailored programs targeting breathing, strength training and posture awareness. Schreiber, who is trained in the treatment, works with patients to develop daily routines that act against the curve’s progression.
One note: I’ve learned the hard way that insurance doesn’t always cover Schroth therapy.
But in general, scoliosis patients should find a specialist with training in managing the complex condition, Schreiber said.
Treatment challenges
Since being diagnosed with scoliosis as a kid in the 1990s, my patient journey has been anything but straightforward. Throughout my adult life, I’ve seen specialists of many flavors.
But yoga became a game changer for me after I found an instructor who understood how to modify poses for scoliosis. At the height of the pandemic, her online instruction helped me cope with the discomfort of endless sitting while working from home.
I also incorporate some Schroth therapy routines at home, but I currently don’t go to physical therapy partly because of out-of-pocket costs and conflicting guidance I received from different practitioners. Online resources about which exercises and stretches are safe for scoliosis contradict each other, too.
Even while interviewing experts for this article, I found differences in their general advice. For example, while Schreiber cautions against stretches and exercises that put strain on the spine – such as twisting and prolonged bending – Thomas generally tells his scoliosis patients to do whatever activity they want, as long as it doesn’t cause them pain.
All of the experts agreed, however, that people with scoliosis should work on good posture, take breaks from sitting, exercise moderately and stay fit to improve muscle tone and core strength. Also of prime importance: bone health, to prevent a worsening of the spinal curve.
My spine still curves the way it did on my childhood X-ray, but I’m making this my year to improve my posture and work on my back through more consistent stretching routines, exercises and yoga. “Yoga will not fix scoliosis but will likely help with better posture, strengthening and perhaps some pain control,” Thomas told me.
Schreiber says her adult patients also don’t expect to have straighter spines, but rather a desire to improve symptoms.
“You don’t walk around thinking of yourself as an X-ray,” Schreiber said. “So it’s really about what truly matters to you.”