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SURGERY TO HELP CHILDREN WALK DRAWS PARENTS ACROSS THE WORLD TO ST. LOUIS


From  Stltoday, posted January 9, 2012.  Reposted by request April 18, 2012

ST. LOUIS • When Isobel Finlayson of Kilmarnock, Scotland, took her twins with cerebral palsy to physical therapy, she met one family after another who had made the overseas trip to St. Louis to see the surgeon who could help their children to walk.

"They had all come to Dr. Park," Finlayson said.

The parents' stories, coupled with even more she found on Facebook, prompted Finlayson to make the trip to St. Louis Children's Hospital, where Washington University neurosurgeon T.S. Park performed selective dorsal rhizotomy on her 6-year-old twins two weeks ago. They have spent most of their lives in wheelchairs. Ellie has dreams of skipping, while Laurie wants to play football (soccer, as we know it).

"As a parent, it's my job to give them the best chance in life," Finlayson said.

Families from around the world..

Families from all over the world are flocking to St. Louis to have Park perform the surgery because he has refined and studied the procedure more extensively than any other surgeon. His successful results also have doctors worldwide seeking to learn his technique.

"His findings are absolutely fundamental and influential," Dr. Ralph Dacey Jr., the Washington University chairman of neurological surgery, told the university's magazine earlier this year. "He is one of the few people in the world to have perfected the technical aspects of this procedure, and he has systematically studied its effectiveness and role in the overall treatment of cerebral palsy."

Dr. Samuel Browd, a pediatric neurosurgeon at Seattle Children's Hospital, said Park single-handedly popularized the surgery and proved its benefits. Browd counted himself among a new generation of neurosurgeons copying Park's technique.

"We all certainly look to his publications for guidance on how the procedure is performed, and we are taking his lead when offering the procedure at our institution," said Browd, whose hospital began routinely offering selective dorsal rhiztomy about 18 months ago. "He's really done a lot to advance this procedure, and that's allowed folks like myself to learn the technique from others he has taught, and bring it to communities like Seattle to serve the Pacific Northwest."

Joining the Finlaysons that week were nine other families from the United Kingdom, plus families from Austria, Italy, Korea, Mexico, Poland, Saudi Arabia and Singapore.

Communication by Facebook

A Facebook group with nearly 2,000 members appears to be playing a big role in drawing international families. Parents share information and success stories on the social networking site. They post videos of their children struggling with a walker before surgery, then running around the room after surgery.

"That is what made up our minds for us," Finlayson said. "You're seeing people who've been through it, and all different ages. You are seeing the before and after."

Park and other staff members also respond to parents' questions on the page, she said.

Selective dorsal rhizotomy is not new. Developed in the 1980s, it involves cutting sensory nerves in the bottom of the spine to permanently relieve muscle spasticity, or rigidness, caused by cerebral palsy. A majority of people with cerebral palsy have spasticity in their lower limbs, making walking and sitting difficult. It also can cause pain, cramps and spasms.

In 1991, Park pioneered a less-invasive technique that involved removing bone from one vertebrae to locate the spasticity-causing nerves. The technique is more challenging than the original procedure, which removed bone from up to seven vertebrae, but carries fewer long-term back complications.

The years 2008 and 2009 saw a slight increase in the number of international patients undergoing selective dorsal rhizotomy at St. Louis Children's Hospital — jumping from just a handful to 16. In 2009, two news stories in the United Kingdom sparked interest in families from England and Scotland.

And toward the end of 2009 came the Facebook page.

The following year, 58 international patients came to Children's Hospital for the surgery, according to hospital officials. This year, Park is on pace to operate on 75 international patients. Patients from outside the United States have gone from making up about 5 percent of the surgeries to 40 percent in less than 10 years.

That's far more than in any of the hospital's other services. International families make up about 1 percent of the hospital patients as a whole.

Park also gives credit to social networking. "They see these videos," Park said. "There are 150 videos on Facebook and thousands of comments by parents."

Experience Counts

Browd in Seattle said Facebook can be a powerful tool in getting information out about little-known procedures. "He's done so many of these cases that he certainly has the experience to go out there and use social media effectively," he said.

Doctors elsewhere can perform the surgery, but none compare with Park's experience or success rate. Park reports having performed selective dorsal rhizotomy on more than 2,200 patients.

"Nobody (else) has done even 300 operations," he said. He also boasts of results with no major neurological complications — a comfort for parents. Complications can include paralysis, incontinence and loss of sexual function.

"Dr. Park's 100 percent success rate. That obviously played a big part," said Nicola Lowrie, who also traveled to St. Louis from Scotland. Her 3-year-old daughter, Leah Ligertwood, had the surgery on Aug. 30. Before the operation, her mom said, Leah walked on her toes and had to wear braces, which hurt. Her feet turned inward, and she fell a lot.

Three weeks afterward in physical therapy, Leah was walking flat-footed down stairs, up hills and balancing on wobbly stools. Without the surgery, Lowrie said, the spasticity would have led to problems with Leah's spine and hips. She would have been in a wheelchair by age 10.

"It's life-changing," Lowrie said.

Most patients are between the ages of 2 and 6, Park said. But adults can have the surgery, too. Results vary depending on a patient's mobility before the surgery.

"For those children who were able to walk with assistance, many of them can walk by themselves," he said. "Those who were in a wheelchair can walk with a walker or crutches."

What also makes St. Louis unique, Park said, is that he works closely with an orthopedic surgeon. Many of the patients also have short tendons that need to be released with surgery, which is done a week or two after the rhizotomy. "The combination of this gives them a dramatic improvement in walking," Park said.

International families often work for months to raise thousands of dollars to cover the cost of airfare, surgery, physical therapy and accommodations while in St. Louis for four to six weeks. Expenses add up to about $40,000 or even more if other surgeries and a longer stay is required.

Finlayson said her family has been fundraising since January, hosting walks, bike rides, football matches and a climb to the top of the tallest mountain in Scotland. They bagged groceries, held a party with a hypnotist and took bets on an imaginary horse race.

She wants Ellie and Laurie to be able to care for themselves later when she and her husband can't help them.

"Just to be able to get their toys and go to the bathroom by themselves. Or when the postman comes, they can go get the mail," she said. "It will mean so much."

Six days after having the surgery, Ellie walked with physical therapist Michael Kenyon holding her by the waist. "You're going to really like this," Kenyon told her, touching her free hand. "You'll be able to use this and walk by the counter and pick up Dairy Milk (like a Hershey's bar) and eat it while you are walking."

Laurie sat on a bench a few feet from a small goal and, for the first time on his own, kicked a soccer ball. He did it over and over, determined to get the ball in the net.

"I made 10 goals!" he cheered.
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