Back on Track: Scoliosis Treatment
A diagnosis of scoliosis can throw a child a curveball. Typically, at age 10 to 15 — just as kids embark on the sensitive years of adolescence — they might notice that one hip appears higher than the other. Or their shoulders or waist might look uneven.
Scoliosis, with its C- or S-shaped curvature of the spine, can be an unwelcome finding, especially for a child on the cusp of adolescence. But it’s important to diagnose scoliosis early, so the condition doesn’t significantly progress, putting kids at risk for pain, physical deformity or lung or heart issues related to the curvature.
More than 7 million people are diagnosed with scoliosis each year, according to the National Scoliosis Foundation. Fortunately, new advancements are improving the options for children and adolescents with pediatric scoliosis.
Correcting the curve
For Chloe Berkich of Itasca, the scoliosis diagnosis came as a surprise. At age 12, during her annual physical, her family practitioner noticed a curve in her spine when he asked her to bend forward, in a routine screening test called the Adams forward bend.
The pediatrician referred Chloe to Shriners Hospitals for Children – Chicago for diagnosis and specialized scoliosis care.
At the time of her 2016 diagnosis, Chloe’s curvature was 37 degrees. Because her growth plates had already closed, she was not a candidate for a back brace, a typical treatment for scoliosis.
Chloe started with a physical therapy program, called the Schroth Method, designed to help children hold their spines straighter. But Chloe’s curvature progressed, causing more stiffness and pain in her back.
“Chloe seemed to be having good success, but when her curve started to change significantly, the therapists couldn’t do anything else,” her mother, Carrie Berkich, says.
A spine curvature of 10 degrees qualifies as scoliosis. For mild cases, doctors usually stick with observation to make sure the curvature doesn’t significantly progress.
People with a curvature of 25 to 40 degrees typically wear a customized brace to prevent further curvature. When the curvature progresses to 45 degrees or higher, they usually need spinal surgery to straighten the spine.
Overall, about 30% of people with scoliosis use a brace, and about 10% of adolescents with scoliosis need surgery, according to Johns Hopkins Medicine.
About 80% of scoliosis cases are idiopathic, meaning of no known origin. Other scoliosis types are due to nervous system problems — such as cerebral palsy or muscular dystrophy — that affect the muscles.
Bracing is an effective approach for adolescents diagnosed with idiopathic scoliosis, says John Grayhack, MD, pediatric orthopedic surgeon at the Ann & Robert H. Lurie Children’s Hospital of Chicago. Worn under clothes, a brace covers the torso from the armpits to the pelvis.
Previously, patients were instructed to wear a brace for 18 to 23 hours a day. But recent studies show that it’s fine not to wear the brace all day, giving kids a break during school hours. A multi-site study, published in 2013 in the New England Journal of Medicine, showed a success rate of 90% to 93% when individuals wore a brace for 13 hours a day or more.
“We encourage kids to wear it between 13 to 18 hours a day and no more,” Grayhack says. “Studies prove that a brace can work, and if you wear the brace for 18 hours, it works just as well as if you wear it for 24 hours a day. That’s a big improvement.”
Braces can decrease the need for surgery, says Steven Mardjetko, MD, an orthopedic surgeon at Illinois Bone & Joint Institute. “[The study] definitively demonstrated that scoliosis bracing, done the right way, will decrease the need for surgery in children with progressive adolescent idiopathic scoliosis,” he says.
Spinal fusion surgery
Because curvature typically worsens during growth spurts, every three to six months Chloe saw Purnendu Gupta, MD, chief of staff at Chicago Shriners Hospital, for observation.
Three years after diagnosis, when Chloe’s curvature progressed to 56 degrees, Gupta recommended spinal fusion surgery, which involves fusing vertebrae and implanting rods to straighten the spine.
This is a disease that is emotionally scary. But the reality is that we have the opportunity of getting them back to doing everything they did before treatment.”
Spinal fusion surgery corrects the spinal curve and gives individuals adequate space in the chest for the lungs to grow. “The most important reason to do the surgery is to maximize the development of the lungs so they can live long and healthy lives,” Mardjetko says.
As Chloe’s scoliosis progressed, it affected her lung functioning, says her mother, Carrie.
“She was having a hard time with her lungs and breathing right about the time she needed surgery,” Carrie says. “After surgery she was able to breathe normally.”
For Chloe, who is a ballet dancer, her July 2019 surgery was well worth the discomfort. “I noticed a difference in my balance right after surgery. From the first time I stood up, I had good posture and balance, and I didn’t have to try so hard to stay straight anymore,” she says.
Surgical advancements have improved spinal fusion surgery.
“We tend to fuse less of the spine, and that’s good because patients are more mobile. There’s less of a longer-term risk of arthritis and back pain,” Grayhack says.
In some instances in younger children, doctors can surgically lengthen expandable growing rods every six months to accommodate the child’s growth.
A newer technology called MAGEC uses an external remote-controlled device to lengthen the magnetically controlled rod as the child grows, reducing the need for frequent surgeries, Gupta says.
In August 2019, the FDA approved The Tether – Vertebral Body Tethering System, which is less invasive and may prevent further curvature, Gupta says. Instead of a rod, a flexible tether is pulled tight along the spine, helping to correct the curvature through the child’s growth.
In this procedure, the spine is not fused, allowing for more movement in the spine, Mardjetko says. “It is a fusionless guided growth technique, altering the growth of the spine across segments to actually correct scoliosis,” he says.
The new treatments provide relief at a critical time for adolescents. Chloe is doing significantly better than she was before her surgery, her mother says, and she’s counting down the minutes to when she is cleared to dance.
3% of adolescents have scoliosis.
80% of scoliosis cases are idiopathic, meaning there is no known cause.
30% of scoliosis patients have a family history of scoliosis.
10% of adolescents with scoliosis need surgery.
Originally published in the Spring/Summer 2020 issue
Maryland Curvy Girls Scoliosis Support group
Hi everyone!!! My name is Melanie and I live with my parents and younger brother, Curtis. I also have an older sister, Amanda, who is going to college in Texas. For right now, my plan is to become a professional photographer.
I was diagnosed in 2012 at the end of my 5th grade year, and went through four 23 hour Boston braces until the summer of 2014 when I decided to switch over to a night brace. Unfortunately, my curve was stronger than the brace so on November 19, 2014, I underwent a T4-L4 spinal fusion.
My surgery was done at John Hopkins in Baltimore by the amazing Dr. Ain. At first I was really scared, but getting all the information I could beforehand helped me through, so it wasn’t so bad. I was really lucky. My surgery was supposed to take 8 hours but it only took 6.
I had a smooth recovery and was completely off my meds in less than 2 weeks after coming home. My scar is still a little pink, but it has faded a lot. Some people may hate their scars, but I mine.
It runs from the bottom of my neck to the top of my hips and I think it’s part of what makes me unique.
With Sara leaving for college (we’ll miss you Sara… LOTS), I was asked if I’d to take over the role as leader for our Southern Maryland group. I love Curvy Girls and all that they do.
They helped me through my journey with braces and surgery and gave me the confidence I needed to deal with the crazy day to day stuff ( school and clothes and people being weird). Now it’s my turn to help you… to help you find a way not to be ashamed or embarrassed about your brace or scar.
Maybe do what I did… bedazzle and decorate your brace with stickers, markers, paint, anything you can find. Don’t be scared to show off your scar, because it’s part of what makes you YOU.
Sure, there will be days when you may want to throw your brace out the window or have a good long cry or scream at the top of your lungs (which I felt doing plenty of times), but just remember— it’s just a curvy back, it could be a lot worse. I look forward to seeing you at the meetings and I wish you good luck.
Hey! I am Sara and I was diagnosed with scoliosis at the end of my 6th grade year. I wore a 23 hour Boston Brace diligently throughout 7th grade but my curve was just too aggressive and I had surgery on November 10th 2010, when I was in 8th grade. The surgery took 5 hours, and I grew 2 inches.
My scar is now a beautiful, translucent pencil line, running all the way down my back. This scar tells the story of my choice to take away the pain of scoliosis and illustrates how I found my voice at a critical time. The surgery was a big deal, and I did encounter some complications, which made me doubt my decision at times.
Years later, I understand this was the best decision I have ever made.
Curvy Girls really helped me to develop confidence and feel more comfortable about my situation. As a leader and active participant I see how Curvy Girls has given a voice and strength to members around the world.
Now confident members, wear braces outside their shirts and dresses that expose surgery scars, something that used to intimidate me. My involvement with Curvy Girls helped me appreciate that scars and braces can be beautiful, and tell a story in which you can be your own hero.
I hope that all struggling scoliosis patients can find Curvy Girls and be the hero/heroine of their scoliosis story.
Whatever your needs, we are here for you. As a Senior Leader, I provide support and consultation to other groups and Leaders. In 2015, I was appointed to Curvy Girls Board of Directors.
Meet Ashlyn & Lilly
My name is Ashlyn and I was diagnosed with scoliosis when I was 13-years-old and in 7th grade during a routine physical examination. I am in high school now.
My doctor suspected this diagnosis because she is also diagnosed with scoliosis, and she referred me to the Johns Hopkins Pediatric Orthopedic Clinic for evaluation and treatment. The first time I went to Johns Hopkins I remember feeling overwhelmed and scared.
I am an athlete. I play travel soccer and have aspirations to play this sport in college. I also enjoy running, previously played basketball competitively, and love being outdoors. At the time of my diagnosis, I was also performing the middle school musicals and plays.
My fear was that the treatment for my form of scoliosis would prevent me from continuing to do the things that I love.
Soon into my scoliosis journey, I was recommended for a night brace and to begin the Schroth Method of physical therapy. It was difficult adjusting to both of these forms of treatment, requiring lots of positivity, commitment and adjustment to my routine.
However, I was determined to do what I could to limit the change to my curve. PT appointments were weekly and required me to be disciplined in completing these exercises at home everyday.
Through physical therapy, I have learned a lot about my strengths and weaknesses and how to keep my back healthy, which has helped me as an athlete. Adjusting to wearing a brace to bed every night was the bigger challenge.
I remember panicking when I tried on my brace for the first time, never imagining that I would be able to sleep soundly. I remember first feeling embarrassed by my brace, wanting it sight except at night. But with time, I have adjusted to wearing my night brace which I have been wearing now for 1 ½ years.
I have shared my scoliosis journey with my closest friends who have come to be some of my strongest supports. My journey is not over. I continue to do PT exercises daily, and I am still wearing a night brace, and there are days when this comes easier than others.
Being a Curvy Girls’ Leader allows me to help support and encourage others in their scoliosis journey, recognizing that no two journeys will be the same.
Through my journey, I have had the opportunity to assist in training doctors and providers on early detection and on my treatment process.
I have discovered that providing support, education and speaking about my treatment has empowered me to want to support others, and encourage others with scoliosis to persevere through their treatment while holding onto their goals and dreams.
Hi! My name is Lilly and I was diagnosed with scoliosis when I was 12 years old, during the summer of 6th grade.
When my doctor told me I might have scoliosis and referred me to Johns Hopkins Pediatric Orthopedic Clinic for evaluation and treatment, I did not know what to think.
At the time I did not even know what scoliosis was! My first evaluation my doctor explained that I had two slight curves and as long as they did not get worse than I would not have to wear a brace.
Throughout the school year I began to grow and my curves became worse. At my next appointment, the doctor informed me that my two curves had in fact gotten worse and they would only continue to get worse as my body grew.
He told me the best option for me was to have surgery. I remember feeling very overwhelmed, sad, and scared. I am a dancer and was fearful that having surgery would restrict my passion and stop me from doing what I love.
The summer before 6th grade I had my spinal fusion from my T4 to my T12 at Johns Hopkins Hospital.
Although going into surgery was very scary, I am very glad to have had the opportunity to help myself get better. After my surgery I met a friend who was going through the same thing as me in the hospital and we still talk to this day.
I even grew three inches after my surgery! I am now 14 and two years after my surgery I have been able to continue to dance and even start cheerleading at my high school. I have become much more confident in my own skin after my surgery.
I wanted to start a group in my area with one of my best friends Ashlyn who also has scoliosis in order to be able to talk to others in our area who are going through the same situations as us. I am very passionate about talking to others who have gone through similar experiences, answering any questions, and supporting other girls me.