Teen strives to give hope with scoliosis storyJanuary 7, 2019
By LEANN BURKE
LAMAR — Becky Greulich of Lamar, 18, has always enjoyed running. When she was in middle school, she wanted to run track. But that was not meant to be.
At age 10, Greulich was diagnosed with scoliosis, an abnormal curvature of the spine, and put in a back brace. The brace made it impossible for her to do the stretches and running required on the track team, so she let that dream go.
But after a back surgery fixed her scoliosis in 2016, Greulich developed a new dream — sharing her the story of her five-year journey with scoliosis in a book that could encourage others with the condition. The book — titled “My Scoliosis Story: One Girl’s Journey from Diagnosis to Spinal Fusion Surgery” — published Jan. 1 and is available through Amazon.
Scoliosis affects roughly four million people in the U.S., according to the National Scoliosis Foundation, and the deformity accounts for 48 percent of musculoskeletal deformity health care visits.
Like Becky, most patients are diagnosed in adolescence, and approximately 29,000 spinal surgeries are performed on adolescent scoliosis patients each year, according to statistics compiled by the Clear Scoliosis Institute.
The statistics told Becky that she was not alone in her struggle with the deformity, and that knowledge prompted her to write the experience in a book.
Becky’s 40-page book chronicles her story from her diagnosis in 2011 through four years of wearing a back brace for 23 hours a day and a 2016 spinal surgery. Almost 10 years after the diagnosis, Becky remembers how it felt to hear the news.
“It was kind of scary,” she said. “I didn’t know what they were going to want to do about it, if I was going to have surgery. I really didn’t want to do that.”
Her own self-awareness led to the diagnosis. She remembers noticing pain on the left side of her rib cage, then realizing that that side of her rib cage stuck out farther than the other. Her mother, Linda, made an appointment at Dale Family Medicine in July of 2011. By October of that year, the Greuliches were at Riley Hospital for Children in Indianapolis, and by November, Becky was in a back brace.
“It was really scary,” Linda said. “Whenever she didn’t want to wear the brace, I pushed her to wear it. We didn’t want to go through that back surgery. It was a major back surgery.”
For the next four years, a back brace was Becky’s constant companion, filling her life with uncomfortable nights’ sleeps, extra sweaty summers and a rash where the brace touched Becky’s skin.
Becky found ways to make life with the back brace work. When she’d get an itch, she’d stick a pen or pencil through one of the vent holes in the brace to try to reach it. At school, she modified or skipped physical activities, such as gym class, and she often had to wear clothes that were modified for the brace.
Her classmates noticed the accommodations, and although most of her classmates were kind, Becky recalls a few making fun of her for her. Becky remembers feeling depressed or angry several times. Finally, she had enough of the accommodations that had to be made for her, and the family decided to home-school her.
“This was a big event in Becky’s life and the family’s life,” said Stuart Englert, the editor of Becky’s book and the teen’s second cousin. “As I learned more about the story, I could see how the pain, anguish and unknown had a big effect on the family. That’s the story we tried to tell.”
Shortly after Becky transitioned to home-schooling, the doctors discovered that the back brace wasn’t working and told her to stop wearing it. Free of the brace, the Greuliches waited to see if Becky’s spine would continue to curve. If it did, that could mean surgery.
The family attends church at St. Boniface Catholic Church in St. Meinrad, and praying that Becky wouldn’t need surgery became a regular part of their worship.
But Becky did need surgery. Her curves progressed to near or over 50 degrees, the point where doctors recommend surgery.
The Greuliches got in touch with Trina and Derek Schweikarth of Celestine, whose daughter, Kylie, also had spinal surgery to fix scoliosis. Their companionship was invaluable, Linda said, and they led the Greuliches to Peyton Manning Children’s Hospital in Indianapolis.
In April 2016, Becky had surgery. It took three months of recovery afterward, but after almost five years, Becky’s back was back to normal. She hasn’t had any back pain since.
Becky believes her book will encourage others with scoliosis to hang tough and offer them information about what to expect from treatment.
Some people, she said, may only need a back brace. Others, like her, may have to have surgery.
Regardless of their treatment options, Becky’s goal for her story was always to give others hope.
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