Jessie Clayton can recall urging her son to stand straight and tall as a young man should. She also remembers that he claimed he was trying to do that.
Faye Hawkins kept hoping her daughter’s back problems would just go away, until her daughter became short of breath and prone to fatigue and backaches.
In both cases, the root of the problem was scoliosis or curvature of the spine–in such a severe form that “fusion” surgery was required to straighten the spinal bones.
Detection of scoliosis, an affliction identified centuries ago that first appears in childhood or adolescence, has been simplified and heightened over the years by widespread screenings in schools and pediatricians’ offices. Yet for all its history and the modern wealth of medical technology, a quick or simple cure has been frustratingly elusive.
In most cases, patients are required to wear a back brace for a year or more, so the condition also produces peculiarly difficult social side effects at an age when kids are hyper-conscious of appearance and want to blend in with peers.
Today, however, researchers are seeking breakthroughs that might reduce the length and awkwardness of the treatment–and make surgical correction obsolete.
In the meantime, the ailment’s stubborn legacy was apparent when Children’s Memorial Hospital recently held a “Fusion Reunion” for parents and teens who had undergone spinal fusion surgery to straighten their spines.
The first reunion of its kind offered by the hospital, it was a way for patients and their families to meet and draw support from one another.
“It makes me feel like I’m not the only one,” said Nakisha Hawkins, 16, Faye’s daughter, as she looked at others around the room. “I tell a lot of people what I have, and it’s like (they ask), `What is that?’ Now I’m around people that know.”
Engineers, such as Illinois Institute of Technology’s Kevin Meade, an associate professor of mechanical engineering, and his colleagues, are trying to see if mathematical models can reliably predict which spinal curves will progress and which will not, in an attempt to ultimately eliminate the need for spinal fusion surgery. Such surgery can cost more than $70,000, compared with braces that may be as little as $1,500.
And Burr Ridge orthopedist Thomas Gavin and his colleagues are developing a tiny circuit board to be worn by youths who have been prescribed back braces to determine how many hours per day the brace needs to be worn.
Gavin hopes to learn how much improvement a brace worn for 10 hours a day yields, versus a brace worn for 15 or 23 hours per day.
“We don’t know anything about (brace) wearing time because it’s never been accurately measured,” Gavin said. “It has not been proven that 12 hours is better than 23. Until we know more, we need to identify the minimum wearing time needed to achieve the maximum results.”
If a brace can provide the same benefits after being worn for 10 hours as it does 15 to 20 hours, then it might be possible for young people to see physical improvement without having to wear the brace to school, Gavin said.
But the primary goal, he said, is to avoid surgery at all costs.
Scoliosis affects only an estimated 4 percent of the population. More girls develop it than boys. Scoliosis is often diagnosed during the growth spurts of early adolescence. An increasing number of youths whose spinal curves are slight (measuring less than 30 degrees) are being found in school-based screenings. Braces work well in these cases, Gavin said.
And back braces aren’t the unwieldy contraptions they used to be.
Unlike the Milwaukee brace used in the 1960s and 1970s, with its metal neck ring that attached to a three-barred bodice, the Rosenberger braces in use now are discreet, said Gavin, who helped design the Rosenberger brace.
The neck ring and the metal bars are gone, he said. And the lightweight and easily-concealed brace fits under the arms and breasts down to the pelvis, easing mobility.
“Kids still don’t like to wear braces,” Gavin said. “But I’m very proud when patients come in with brothers and sisters and I can’t tell who’s wearing the brace.”
Uncorrected, scoliosis can progress to the point where the person’s ribs press onto the lungs or the heart or it can cause back pain and arthritis, authorities said.
Gavin said back braces for scoliosis date back to pre-Columbian times. The earliest one found was made of birch bark. Braces made of metal and plaster were used in Europe, and braces from the 12th, 13th and 14th Centuries bore some resemblance to the Milwaukee brace, he said.
“One of the best signs of a treatment is how long society embraces it and how long it withstands questioning of its effectiveness,” Gavin said. “Bracing has done both.”
Typically, those who need surgery tend to be diagnosed after spinal curves have progressed beyond 35 to 40 degrees–curvatures that have been in place a while.
To ease the trauma of major surgery, the families often are given the names of other teens who have had the surgery so they can ask questions about the procedure, according to Dr. John Sarwark, an attending orthopedic surgeon at Children’s Memorial Hospital.
In the surgery, two rods are attached to the backbone on either side of the bony ridge and it makes the spine fuse into one piece that doesn’t bend anymore.
“It was the longest 8 1/2 hours we ever spent,” said Diane Vogelgesang, mother of 9-year-old Brian, who had the surgery and who is wearing a brace during his recovery. “We did a lot of crying and we did a lot of praying.”
The child remains in the hospital five to seven days, until he or she is able to get out of bed and walk up and down steps.
Patients return to school in four to six weeks, though they cannot take physical education for a year. The recovery is gradual. They cannot lift anything heavy or do anything else very physically demanding.
Leslie Anastos, 13, said one of her friends carries her books while other friends clear the way around her to ensure she doesn’t get pushed while changing classes at Orland Junior High.
“They’re like bodyguards to me,” she said.
Fortunately, only a few patients who have had the surgery require bracing or body casts afterward. In the past, all scoliosis surgery patients used to be braced or placed in casts, said Sarah Sauntry, a registered nurse at Children’s Memorial Hospital.
Hawkins and Clayton talked with other parents at the reunion and their teens, noticeable because their posture is ruler-straight, chatted too. Some teens already have become peer helpers for others about to undergo the surgery.
Dayana Lugo, 14, of the North Side, had the surgery two years ago and recently showed the scar that runs vertically from the top of her shoulders to her tail bone to a girl who was about to have the operation.
The results, Lugo said, are obvious to her.
“I look straight, I look taller and I look different from how I looked before,” Lugo said.
