The parents of Cassie Merrill first noticed something was wrong with their daughter at a young age.
Whereas most children begin sitting up on their own about 6 months and will learn to pull themselves up and walk by their first birthday, Cassie continued to crawl like a wounded soldier, dragging her legs behind.
“She was doing the army crawl,” her father, Dave Merrill, recalled recently from his daughter’s hospital room. “It was almost as if she didn’t realize she had anything from the hips down.”
When his daughter did begin walking, her ever-tight calf muscles forced Cassie to walk on her toes, throwing off her balance and posture. Before her second birthday, she was able to move about slowly with the aid of a tiny walker and, with some difficulty, finally took her first independent steps at the age of three.
Diagnosed with spastic diplegic cerebral palsy, Cassie, now 7, eventually grew strong enough to walk alone with the help of braces, physical therapy and periodic Botox injections to ease her rigid muscles.
But a surgery now offered in central Illinois is providing some welcomed treatment for Cassie and other young patients living with the ailment.
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Dorsal rhizotomy
In late October, Cassie was one of the first to undergo a dorsal rhizotomy at the Children’s Hospital of Illinois at OSF Saint Francis Medical Center.
The operation, of which only a handful have been done in Peoria, involves selectively cutting some nerve fibers running through the spinal cord to reduce spasticity — the increased tension that tightens and shortens muscles. By turning certain nerves permanently “off,” the operation relieves tension in the legs and improves a patient’s ability to walk.
“In a child with spasticity, some of those nerves are hyperactive,” said Dr. Julian Lin, a pediatric neurosurgeon at the Illinois Neurological Institute at St. Francis. “This operation removes some of that.”
What is it?
Cerebral palsy is a lifelong neurological disorder caused by abnormalities during the brain’s development either in utero or within a year or two after birth. The disorder, of which there are several different forms, often causes stiff, spastic muscles in the legs and sometimes the arms and ultimately affects the body’s ability to move, balance and maintain posture and muscle control.
During the procedure, physicians sort through the nerve rootlets and stimulate each one electrically. By examining the response from muscles in the legs, doctor can identify which of the rootlets cause serious spasticity. Those rootlets are then cut, lessening the messages sent from the nerves to the muscles and reducing the tension.
Conventional treatment for cerebral palsy usually includes a mix of physical therapy and drugs to reduce tremors and spasticity and to help relieve muscle pain, Lin said. But those remedies could only go so far and rarely treat the underlying cause of the disorder.
Lin said the hours-long operation is fairly invasive and involves a painful recovery. Most candidates for the surgery will undergo a four to six week hospital stay afterwards, followed by months of physical therapy.
The results, however, are promising. A study published this month in the journal BMC Pediatrics examined the dorsal rhizotomies of 35 children five years later and found not only was muscle tone immediately reduced after the operation but it remained so throughout the years.
A few weeks after her surgery, Cassie’s parents already saw a difference in how their daughter positioned and moved her legs but noted, because nerves were severed, that she would have to retrain her muscles.
“Now her muscles have to relearn. Her whole body has to relearn proper gait and strength,” said Cassie’s mother, Pam Merrill. “To someone else who looks at her, they say that she can’t walk. Not yet, but she is going to have a lot better chance at walking upright and more securely now.”
The surgery has been offered for years in big cities throughout the Midwest, including St. Louis and Minneapolis. St. Francis now offers it to patients, a welcomed benefit for the Merrills, who live in Hudson in McLean County.
“I think how much better it is that she is right here, 50 minutes away,” said her mother. “For the family and child support, you can’t beat it by having it close to home.”
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