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Health Information Growing Up With Scoliosis: Katie's Story

An active, 20-year-old Katie is busy preparing to study abroad in Africa. She doesn’t look any different than other women her age, but Katie has scoliosis — scoliosis that was so severe, she needed surgery to straighten out the s-shaped curve of her spine.

Sarah, Katie’s mother, first noticed that something was wrong while giving her eight-year-old daughter a bath. “I was worried when I saw that Katie’s spine was curved, so we went to her pediatrician for him to check it out,” says Sarah. An x-ray confirmed that Katie had scoliosis — defined as a spinal curvature of at least 10 degrees — and her doctor referred her to a specialist for treatment.

In 1997, Katie began to see Ronald DeWald, MD, an orthopedic surgeon at Rush who was recommended to Sarah by a family friend. DeWald had been treating patients with scoliosis since the 1970s, and he and his colleagues at Rush were among the first in the nation to use metal rods during spinal fusion surgery to straighten the spines of patients with scoliosis.

Prior to using rods, orthopedic surgeons attached a portion of a patient’s leg bone to the inside of the curve to keep the spine in a straightened position. A patient spent months recovering in a body cast until the leg bone fused to the vertebra (the small bones that form your spine). The use of a metal rod instead of a patient’s leg bone allowed a faster recovery. First, because the patient no longer had to heal from the leg surgery and second, since the metal rod acted as an internal brace, it decreased the amount of time a patient would be in a body cast. A patient could now leave the hospital about a week after surgery and return to daily activities within about a month.

Since DeWald was nearing retirement, he recommended that Katie start seeing his son Christopher DeWald, MD. The younger DeWald had followed in his father’s footsteps to become an orthopedic surgeon specializing in scoliosis and other spinal deformities.

From Monitoring to Active Treatment

DeWald closely monitored Katie with periodic x-rays of her spine throughout elementary school. The curvature of her spine continued to worsen. Once it reached about 25 degrees, Katie began to wear a custom-fit brace to try to prevent further curvature. During middle school, Katie initially wore the brace only at night, but eventually she began to also wear it during the day. In spite of this, however, the curvature continued to worsen as Katie grew.

“It was hard for Katie to wear the brace,” says Sarah. She wanted to be like everyone else, but you could see it through her clothes.” The brace was also uncomfortable, according to Katie, and limited her movement.

By the time Katie was a freshman in high school, the curve in her spine had become severe enough — measuring almost 50 degrees — that DeWald began to discuss the surgical option with Katie and her family. About one in every 1,000 people will have a curve severe enough to require surgery. In these cases, if surgery is not performed, the curve can continue to increase, which can cause difficulty breathing and stress on the heart. It can also lead to pain and degeneration of the spine later in life.

“I was nervous and afraid,” says Katie. “I wondered if I would not be able to bend for the rest of my life.” Sarah was also nervous about the surgery: “It wasn’t anything I wanted to do, but I had confidence in Dr. DeWald,” says Sarah. “I didn’t want Katie to be in pain when she got older.”

A Successful Surgery

The family chose to have Katie’s spinal fusion performed at Rush in late 2004. DeWald attached metal rods to Katie’s vertebrae to correct the scoliosis. Also, the surgery stabilized her spine so that she no longer has to worry about the curvature progressing.

Katie spent six days recovering in the hospital after surgery. Since the family lives more than an hour’s drive from Chicago, accommodations were made for them to stay on the Rush campus so that they could be with Katie during her hospitalization. By the first of the new year — about a month after surgery — Katie returned to school and to a relatively active life. (Some activities that cause undue stress to the spine, such as horseback riding, gymnastics and skiing, are restricted for about a year after surgery.) Katie’s recovery went smoothly and now, “I don’t even think about it anymore,” she says.

“It feels so much better to be without a brace — to be in your own skin,” Katie adds. “I’d encourage someone in my situation to have the surgery and trust your doctor; Dr. DeWald is like family to us.”

DeWald is pleased with Katie’s outcome and points out that it’s representative of how far treatment has come for children with scoliosis. “Compared to 20 years ago, it’s amazing how active and functional kids are now,” says DeWald. “The program at Rush has a history of being on the leading edge of scoliosis treatment, and Katie is one example of how our patients benefit.”

About Scoliosis
Scoliosis, a sideways curvature of the spine, appears most often during a child’s growth spurt just before puberty. However, scoliosis can occur in infants and adults as well. In many cases, scoliosis is mild and treatment is not necessary. Curvature can be monitored with x-rays. Some children will need to wear a brace to help prevent the curve from worsening.

In severe cases of scoliosis, surgery may be necessary to straighten the spine. Signs and symptoms of scoliosis may include the following:

  • One shoulder or hip may appear higher than the other
  • The person’s head is not centered over the body
  • One shoulder blade may stick out more than the other
  • The ribs are higher on one side when the person bends forward from the waist
  • The waistline may be flat on one side 

These signs and symptoms can appear gradually in children. A parent may first observe that a child’s clothes do not fit right or that hems hang unevenly. These signs and symptoms also apply to adult scoliosis. If you notice signs or symptoms of scoliosis, talk to your doctor. A thorough physical exam and x-ray can accurately diagnose scoliosis.

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Please note: All physicians featured in Discover Rush Online are on the medical faculty of Rush University Medical Center. Some of the physicians featured are in private practice and, as independent practitioners, are not agents or employees of Rush University Medical Center.

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