Larry Hopkins and his 16-year-old daughter Maddie remember the moment a doctor told Maddie she had scoliosis.
"I'll never forget the look on her face," Larry says. "Her bottom lip stuck out and she started to tear up. I felt awful."
"I was pretty upset," Maddie says. "I knew what it meant."
Scoliosis is a sideways curvature of the spine. Maddie knew what the diagnosis and the probable treatment meant because the person who first suspected she might have scoliosis also had it as a child — her dad, Larry.
About three to five children out of every 1,000 have scoliosis severe enough to require treatment, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Children usually get scoliosis screenings at rou- tine pediatrician appointments during back-to-school time. Most scoliosis occurs during the growth spurt that takes place right before puberty, or roughly between the ages of 9 and 15, with 2 to 3 percent of all children having it before age 16. Larry was unusual in that his scoliosis was diagnosed at age 7.
"They told me I couldn't play football anymore," he says. "It was the worst day of my life up until then."
Though the incidence of scoliosis is the same in boys and girls, according to Dr. William Accousti, a pediatric orthopedic surgeon at Children's Hospital and an associate professor of clinical orthopedics at LSU Health New Orleans School of Medicine, girls have a seven to eight times greater risk of the curve progressing. So Larry also was unusual in that he needed further treatment. He wore a brace for three years and had surgery at age 10; he had another surgery and wore a body cast for nine months when he was 16.
"Yes, hearing [that I had to go through the process again] topped that last worst day," he says.
Larry knew the most common type of scoliosis, idiopathic scoliosis, has a strong genetic component, so Maddie's diagnosis when she was in the sixth grade was another blow.
"It's a horrible feeling — like you've passed it on," Larry says.
Maddie doesn't view her diagnosis as his fault. "I never felt like that," she says. In fact, Maddie says it was better know- ing something about the disease. "When they were telling me to wear my brace, I knew how important it was," she says. "And I knew I was lucky that we had caught it early."
A diagnosis of scoliosis doesn't necessarily mean the curvature of the spine will get worse. In many cases, all that is needed is monitoring, usually every four to six months, to make sure it is not progressing. But if the scoliosis does progress and is left untreated, it can result in appearance issues, chronic back problems, pain and lung and heart damage. When the rib cage presses against those organs, it's hard for lungs to expand and the heart to pump.
Treatment depends on the severity of the curve and the child's stage of growth. A brace is the common choice for children with spinal curves between 25 to 40 degrees, especially if their bones are still maturing. A brace won't cure the scoliosis, or change it, but it usually prevents further curvature. In the past, braces had to be worn as long as 23 hours a day, but Accousti says new braces, such as nighttime and bending braces, accomplish the desired results in fewer hours.
The change in braces is evident in the Hopkins' varied experiences. Larry's childhood brace was a large metal device that could not be disguised. "People felt sorry for me and I hated that," Larry says.
Though he has worked as a computer programmer in New Orleans for many years, Larry says there are people on the Gulf Coast where he grew up who still remember him wearing the brace as a child. Maddie's brace, a plastic device she covered with stickers, was not as noticeable. She had just gotten her brace when she started middle school at Ursuline Academy, and another student poked her in the stomach and gave her a weird look.
"She said, 'Do you have a book under your shirt?' and I said 'No, it's just my brace.' To most people, it wasn't that noticeable," says Maddie, now a high school student at Mount Carmel Academy.
Surgery, the other treatment for scoliosis, is usually indicated for curves between 40 and 50 degrees. The most common type of scoliosis surgery is spinal fusion, in which the surgeon connects two or more vertebrae together so that they can't move. It's done with a combination of screws, hooks and rods that are attached to the bones of the spine to hold them in place. They normally remain there permanently.
Accousti says scoliosis surgery takes about two-and-a-half to three hours, with patients walking in two to three days and leaving the hospital on the fourth.
"Scoliosis surgery is one of the safest orthopedic procedures around, and the risk of a permanent neurological event is almost unheard of," Accousti says. "The vast majority of kids only need one operation. And you know what I get from a lot of kids? Many of them say that going through the surgery was actually easier than having to wear the brace. There is a lot more anxiety leading up to this surgery than is warranted."
Accousti also says surgery can help improve growing children's height, since it corrects their scoliosis. Three to six months after surgery, most kids can resume almost any activity, except possibly collision sports.
"Scoliosis surgery is an enabling surgery rather than a disabling one," he says. "People can continue to do what they want in life."
When asked what she'd tell someone newly diagnosed with scoliosis, Maddie says, "I'd probably say that I know it sucks, but it's important to wear the brace and that couple of years will go by faster than you think. I barely ever even think about it, really."