Twenty-year-old Rachel Voorhees of Walden remembers the moment seven years ago when she first learned she had scoliosis — a muscular imbalance in the back which causes the spine to contort into abnormal curves. “I was really ashamed,” she says. “I thought it was this weird thing that no one else had.”
But Voorhees is not alone: Two to three percent of Americans (close to six million people) suffer from this disorder. “Many people have subtle curves in their back, but it’s only considered scoliosis when it measures above 10 degrees,” explains Dr. Nicholas Renaldo, a spine surgeon at Orthopedic Associates in Poughkeepsie. Scoliosis — which often manifests visually with uneven shoulders, occasional back pain, humps on the back, or protruding ribs — affects people in all stages of life, but is most commonly seen in children, generally girls, approaching puberty. The cause is unknown, though genetics may play a part.
Roughly 10 percent of adolescents have some degree of scoliosis, but less than one percent of those cases wind up needing treatment. Says Renaldo, “We usually don’t do anything until it grows to 30 degrees or more.”
The most common first treatment for this condition is fitting the patient with a back brace; this does not correct the curve, but rather stops it from getting worse. The idea is for the patient to wear it until he or she finishes growing, at which point the curve will stop growing, too. “When the kid grows fastest is when the curve grows fastest, so wearing the brace at this point prevents it from getting bigger,” Renaldo explains. But such a contraption — which some patients must wear for 23 hours a day — can be taxing, both physically and socially. (Judy Blume famously documented these struggles in her 1973 young adult novel Deenie.) Voorhees, who wore a brace for a year and a half, remembers the difficulties she had. “It felt like it was squeezing me all the time. And I had to get bigger clothes to fit over it, which was tough because at that age, your appearance is a big deal.”
If bracing proves unhelpful and the curve reaches 40-45 degrees, most doctors recommend surgery. “Once you hit that number, you risk the curve growing about a degree a year into adulthood,” says Renaldo. “When it hits 60 or 70 degrees it can put pressure on the heart and lungs, and that’s life-threatening.”
In the past, the standard surgical procedure involved placing hooks at the top and bottom of the spine and connecting them to rods to straighten the curve. This invasive procedure usually had a long and strenuous recovery time.
But during the last 15 years a less-invasive method has become more widely used. Renaldo explains that, instead of hooks, special screws are used as “anchor points that are put into each bone. Once you have these throughout the spine you can manipulate it in the proper direction.” Patients are usually walking again within three days, and only need to stay in the hospital for six.
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An X-ray of a spine twisted by scoliosis
Naturally, any spinal surgery comes with risks. “This area in the body is high-priced real estate, which is very sensitive to any kind of disturbance,” says Renaldo. Another new development — called intraoperative neuromonitoring — is helping make the surgery easier and more effective. “In the past if there was a problem, we might have to wake up the patient during surgery to make sure everything was working,” says Renaldo. “Now we have a monitor that sets off an alert if a nerve is excitable or the spinal cord is in jeopardy, and that allows us to react.”
The latest Valley facility to offer a range of scoliosis and spinal treatments is the Spine Institute in Hudson. Part of Columbia Memorial Hospital, the institute opened in its current location in January and already sees close to 80 patients a day. “We actually spend half our time trying to talk patients out of surgery,” says Institute Director Dr. Ersno Eromo. “Usually our scoliosis patients are kids, so surgery should only be done when it’s absolutely necessary.”
Other alternative treatments have surfaced in recent years. In 2000, the CLEAR Institute presented a new series of chiropractic exercises to treat scoliosis in place of braces or surgery. The exercises are meant to not only halt the curve’s progression, but also to help straighten it. “Our goal is threefold,” says Dr. Andrew Strauss, who practices at Hudson Valley Scoliosis Correction Center in Nanuet. “To get mobility back into the locked-up areas of the spine; to strengthen the muscles to reduce the size of the curve; and to retrain the brain to recognize the new posture as normal.” The routine is rigorous, requiring 40 minutes of exercise — often done with elaborate equipment — twice a day for the initial three months, then once a day until the patient has finished growing.
Strauss’s patients range in age from seven to 81, but he finds the most success with younger patients. “With a child between seven and nine years, we can knock that curve down and take that twist out of the spine before they hit the growth spurt,” he explains. His middle-aged patients also profess that CLEAR helped them manage their curves better than traditional treatments.
One major handicap CLEAR faces is the fact that it is not widely endorsed by the medical community. “It’s a major flaw that we’re working hard to address,” says Strauss. Although Rachel Voorhees tried CLEAR for one year, it proved ineffective; she had surgery in May of 2012. “My curve went from 55 degrees to 16 degrees,” she says. “Right after the surgery I couldn’t exercise for six months, but now I can do pretty much everything I want.”
Around the same time, Voorhees, now a sophomore at Adelphi University, also founded the Hudson Valley chapter of Curvy Girls, an international support group for young women and girls suffering from scoliosis. “I didn’t realize that there were a lot of people in this area who have the disease,” she says. “But I felt confident that I would be able to run the group.”
Currently, the Hudson Valley Curvy Girls has 10 members, who range in age from 10 to 20. They meet monthly at Voorhees’s home, give updates on their condition, and ask each other questions. “We meet for two hours and just talk,” says Voorhees. “Some of the younger girls who are about to go through [a procedure] ask questions of the older ones who have been through it already. And we give each other advice on how to handle the pain.” The group also raises money by selling bracelets and collecting donations at health fairs. Some of the funds raised have been donated to an African child who could not afford scoliosis surgery. Voorhees says that no matter the different ages or severity of the condition, “we have that one common thing that’s so emotional that we connect well.”
At the end of the day, these group members have each other’s backs — literally.