Pediatric Scoliosis

‘Mr. Adventurer’ never stopped

Robin Ward watched her young teenage son Jonathan dive into his grandparents’ pool and gasped. She hadn’t noticed the hump on his back before. Soon afterward, the teen from North East, Pa., was diagnosed with scoliosis, a sideways curvature of the spine.

“It never infringed on his activities – he was always very active, Mr. Adventurer, involved in Little League and outdoor soccer,” says Mrs. Ward. In high school, Jonathan joined the joined the marching band and swim team. He became an Eagle Scout. He played on the baseball team.

Trouble only surfaced occasionally – like when he swung the bat. Then his left side and arm felt weaker.

Jonathan’s doctor monitored his progress. His curve was becoming more and more severe. By the time he enrolled in Grove City College, “my left side had gotten significantly weaker, “ reports Jonathan, now 21 years old. “I had a significant amount of pain with it.”

Seeking the best for his son

Jonathan’s father, Tim Ward, MD, a family medicine and occupational medicine specialist, hadn’t wanted to expose his son to anesthesia and surgery. Yet he knew that the curve would only worsen. The search for a surgeon began.

Dr. Ward wanted the best – a pediatric spine surgeon with excellent outcomes in scoliosis surgery. The family met with surgeons at two other hospitals. It wasn’t until they saw Ryan Goodwin, MD, at Cleveland Clinic that things really clicked.

Taking time for his patients

Dr. Goodwin spent about an hour with the family, answering all of their questions about the procedure.

“I knew in checking Dr. Goodwin’s credentials that he had the skill and the training,” Dr. Ward recalls. “But he was also so open and receptive; he didn’t seem at all pressured or rushed.”

Mrs. Ward adds, “He could have seen 20 patients that day, but we felt like we were the only ones. He walked out of the room, and all three of us looked at each other and knew. It was the right timing – and the right person.”

Spinal fusion recommended

Posterior spinal fusion was recommended because Jonathan’s curve exceeded 45 to 50 degrees – and because, like most scoliosis patients, he was young and healthy, says Dr. Goodwin. Fusing the bones together would straighten his spine, and prevent heart and lung problems in adulthood.

On June 10, 2008, 19-year-old Jonathan underwent an approximately six-hour procedure. “We were scared to death about all the things that could go wrong as they got closer to the nerves and spinal cord,” says Dr. Ward. “But knowing that they had somebody at the front of Jonathan’s bed, monitoring his neurological and neuromuscular responses, was great.”

Jonathan sailed through surgery. He was soon up and walking. He needed no bracing, but had to avoid twisting, bending and lifting.

Patients can return to school about one month after scoliosis surgery. Physical activity may be restricted for up to one year. Jonathan was cleared by Dr. Goodwin after about 9 or 10 months. “Honestly, being able to carry my backpack full of books, rather than wheeling it around, was one of the biggest relief's,” says Jonathan.

Taking on flip turns

He did venture into the pool to swim during recovery. “It took a while, but he was ultimately able to do flip turns again,” says Dr. Goodwin. These turns require swimmers to roll up into a ball and push off the pool wall.

It’s a common misconception that kids who have a spinal fusion are unable to touch their toes – much less do a flip turn, he notes. But most forward bending is from the hips, so it’s not a problem.
Today, Jonathan feels much stronger, with little difference in strength between his right and left sides.

Freedom to do anything

For his mother, surgery has given Jonathan freedom. “Here is a young man who can go to college, play trombone in the marching band, spend a semester in Europe, play pickup soccer games, run,” says Mrs. Ward. “The world is his.”

Since the surgery, the young mechanical engineering major has grown interested in biomedical engineering – to be able to help other people with spinal disorders.

“Sometimes major events in a young person’s life can impact how they contribute to society. Dr. Goodwin made a big impression on Jonathan,” says Dr. Ward. “I would recommend him to anybody – and I have.”

A Smooth Operation

Mary Clifford is standing tall these days. The 16-year-old junior from Elyria, Ohio, gained two inches in height after undergoing surgery at the Cleveland Clinic in 2009 to straighten her spine.

Three years earlier, Mary was diagnosed with scoliosis, a sideways curving of the spine that usually affects children between the ages of 10 and 16. Scoliosis is mostly painless, which is why routine screening is recommended for children. But in Mary’s case, the curving spine had caused a muscle to bulge in her lower back, resulting in constant pain and soreness. A trip to the pediatrician resulted in her unexpected diagnosis.

“I saw the bulging muscle and thought it was a strain from cheerleading,” says Debbie Clifford, Mary’s mother, a registered nurse. “It didn’t occur to me that she might have scoliosis.”

From back brace to surgery

Scoliosis typically develops slowly, which is why family and friends often don’t notice changes. The cause is unknown, but heredity may play a role in some cases.

Symptoms include uneven shoulders or waistline, one or both shoulder blades sticking out, leaning slightly to one side or a hump on one side of the back.

The Cliffords were referred to Alan Gurd, MD, an orthopaedic surgeon with the Cleveland Clinic who specializes in children with spinal deformities. Because Mary’s curvature was minimal, Dr. Gurd monitored her, prescribing a back brace for night-time use only, as well as physical therapy.  She saw him every six months for X-rays, since scoliosis is more likely to worsen during puberty.

Worsening curve called for surgery

Despite the therapy, X-rays showed that Mary’s curve was growing more severe. So one week before the start of her junior year, she underwent scoliosis surgery at Cleveland Clinic – this time with Dr. Alan Gurd’s son, pediatric orthopaedic surgeon David Gurd, MD.

“Basically, during the procedure we use metal screw anchors with rods to help straighten the spine and allow the bones to fuse together,” he explains. “This holds the patient in a much better overall position and prevents pulmonary difficulties down the road. If untreated, the spine deformity can compress the lungs, which then can’t work as they should.

“In addition, although it is not the primary goal, the procedure does add overall height and improve the look of the spine.”

A smooth operation

The operation went like clockwork, says Mrs. Clifford. “It’s a beautiful correction to her spine. Dr. Gurd did a fantastic procedure,” she says.

After a night on bed rest, Mary walked the next day with assistance; on day six, she headed home. “They take such good care of you and focus on making sure you’re not in pain,” says Mary. By week four, she felt “completely normal,” and couldn’t wait to return to class and friends.

Back to school

Six weeks after surgery, Mary got her wish. She went back to school with only a few changes to her routine. No lifting, bending or twisting or sports for six months, says her doctor.

Mary now keeps two sets of school books – one at home, one at school – to avoid lugging around a heavy backpack. She leaves class five minutes before the bell so that she can walk through the hallways of her crowded high school without getting jostled. And she’s driving her car again – an important return to normalcy for a busy teen.

“I couldn’t ask for a better outcome,” says Mrs. Clifford.

After Congenital Scoliosis Surgery, Active Adolescent Continues to Thrive

John and Colleen Little have known that their daughter, Rachel, had congenital scoliosis since they adopted her as an infant. In fact, Rachel was born with multiple medical issues, including a double hernia, more ribs on the left side than on the right side, and a missing right kidney.

But nothing could slow down this active and athletic 12-year-old girl from Elyria, Ohio—until last year. An X-ray of her back showed that her congenital scoliosis—a curve caused by vertebral abnormalities present already at birth - had progressed to the point where surgery was required.  

Time for surgery

Her doctor, Thomas Kuivila, MD, Head of Pediatric and Adolescent Spinal Deformity Surgery at Cleveland Clinic, recommended surgery to diminish the curvature in her spine and to help alleviate her back pain, which was also getting worse.

Even though they were nervous about their daughter’s surgery, Colleen and John also felt some relief knowing that her symptoms would improve. “The scoliosis was starting to bother Rachel a lot,” says Colleen. “Her right shoulder was dipping down and her left hip was sticking out because of the S curve in her spine. She had a hump in her upper back. And she was in pain.”

Rachel, unlike many patients with a congenital curve, had worn a brace at night to keep one portion of her curve flexible. This too was no longer helping. When Dr. Kuivila suggested surgery, Rachel and her parents were ready.

“For 11 years, we knew that this day would come,” says Colleen. Adds John, “We’ve known Dr. Kuivila since Rachel was 11 months old. It helped to know that Rachel was in such good hands.”

Chance meeting brings support

It also helped to meet another girl who had successfully recovered from a similar operation. Last July, one month before Rachel’s surgery, John and Rachel were at a softball game cheering on her classmates. They learned that one of the softball players had had surgery for scoliosis. In fact, the girl’s orthopaedic surgeon, Ryan Goodwin, MD, is a colleague of Dr. Kuivila at Cleveland Clinic.

They met the girl and her mother and asked plenty of questions. “It really put us at ease to know what to expect and that we were doing the right thing. This little girl was playing softball within a year of surgery!” says John.

Meeting surgical challenges

In August 2009, Rachel checked into Cleveland Clinic’s main campus for surgery. She underwent a procedure known as a posterior spinal fusion.  This entails surgically attaching special rods to the bones of the back and straightening the curvature through a series of maneuvers. Dr. Kuivila notes that all scoliosis surgery is challenging and uses similar implants — but that Rachel’s case was more challenging because additional bony abnormalities were present.

Rachel spent five nights at the hospital and then headed home to recuperate. Just one week after surgery, she took a walk up the street and back with her dad.

In all, Rachel missed six weeks of school, but a tutor came to the house to keep her caught up with her studies.

Delighted to stand straight

She’s delighted by the outcome of her surgery. “I notice that I’m straight and not crooked,” says Rachel, who “grew” 1 ½ inches taller after the surgery.

For Rachel’s parents, the greatest reward has been seeing their daughter gain self-confidence. “It’s just such a relief that everything turned out so well. After all those years of waiting, we’re glad it’s over,” says Colleen.