Doctor employs nerve transfer surgery to provide hope for teens and children with acute flaccid myelitis.
A New York City orthopedic surgeon, using a complex and innovative technique, has successfully restored muscular function to young patients who have a devastating neurological illness that resembles polio.
Dr. Scott Wolfe is a specialist in nerve transfer surgery at the Hospital for Special Surgery (HSS) in New York and director of the HSS Center for Brachial Plexus and Traumatic Nerve Injury.
The illness is acute flaccid myelitis, or AFM, an inflammation of the spinal cord that appears to occur after a viral infection.
This week, the Centers for Disease Control and Prevention (CDC) there were 201 confirmed cases of AFM in 40 states last year. That compares with 35 cases in 2017 and 149 cases in 2016.
“Most affected patients are children and teenagers,” Wolfe told Healthline. “Within a day or two, nearly all experience rapid, progressive paralysis — a partial or complete loss of muscle function in their arms or legs.
“While some patients regain function, many suffer some degree of permanent paralysis. No nonsurgical treatment has been shown to be effective,” he said.
To perform a nerve transfer, Wolfe takes all or part of a working nerve with a less important or redundant function and transfers it to reestablish function in a paralyzed muscle.
Wolfe has restored arm movement and function in young AFM patients who were previously told their paralysis would be permanent.
The journal Pediatric Neurology has published a study that details Wolfe’s work with two patients, ages 12 and 14. After suffering partial paralysis and then undergoing nerve transfer surgery, they regained movement in their arms.
Wolfe said he and his colleagues published their work to raise awareness in the medical community.
In 2014, Wolfe performed the first successful nerve transfer on an AFM patient afflicted with enterovirus EV-D68 respiratory illness. Enteroviruses are a group of common infections that affect children.
Wolfe performed several nerve transfer surgeries for EV-D68 during an outbreak in 2014. Since then, he’s done several dozen nerve transfer surgeries for a variety of conditions.
“The procedure is delicate and meticulous,” he said. “To prepare, my colleagues and I conduct exhaustive planning and hours of muscle and nerve testing. Each set of nerve transfers is performed under a microscope and can take five to seven hours.”
There’s a narrow window for effective surgery
“The procedure is so highly specialized and performed by very few surgeons, so most people, even doctors, are unaware that nerve transfer could potentially help AFM patients,” Wolfe said. “There is a window of opportunity, and the surgery should ideally be performed within six to nine months of disease onset.”
Officials at the CDC that AFM has been on the rise since 2014. Certain regions in the United States reported increases in cases that year and again in 2018.
In the 2014 AFM outbreak, 1,153 cases of EV-D68 were reported, Wolfe said. The result: 120 cases of AFM, clustered in California and Colorado. Most cases were in children, average age 7. They ranged in age from 5 months to 20 years old.
The second major outbreak in 2018 is still ongoing.
One of Wolfe’s case-study patients was Kale Hyder, a teenager from Davenport, Iowa.
At 6 feet, 2 inches, he was a member of his high school basketball team, an accomplished athlete, and played on an elite traveling team.
In June 2015, when he was 15, AFM struck.
His mother, Marcy Hyder, said her son woke up with a stiff neck and asked her for a new pillow.
“By the next day, he could not move his arms and could barely stand up,” she told Healthline. “I rushed him to the emergency room. Soon after, he was paralyzed from the chest down.”
Kale was diagnosed with transverse myelitis, of which AFM is a subcategory. Later, he and his parents met with a highly regarded neurologist in the Chicago area.
Hyder said they received a shocking prognosis.
“He said, ‘I’m so sorry, you’re not going to regain function of your hands.’ It was devastating. Here’s my basketball player, sitting next to me in a wheelchair. Everything changed in the blink of an eye. When we got out of there, we all just sobbed,” she said.
At that time, Kale was receiving occupational therapy at Shriners Hospitals for Children in Chicago. The therapist told the family about another young girl in her care whom Wolfe had helped. In March 2016, the Hyders went to New York.
Several doctors had told Kale he would require assistive devices and a caregiver to help with daily life activities. Wolfe, however, gave him another option.
Wolfe performed nerve transfers to each of Kale’s arms and, one year later, tendon transfer surgery. This restored muscular function in Kale’s hands and enabled him to lift his arm over his head.
Today, Kale, who continues intensive, post-operative therapy, is a freshman at Johns Hopkins University in Maryland. He’s a neuroscience major in the pre-medicine program and credits Wolfe with enabling him to follow his dreams.
Kale wants to help others and plans to become a neurologist and researcher. He attends classes, does volunteer work on campus, types on a keyboard, shops for food, and does his own laundry.
“It’s been 3 1/2 years since the onset of my spinal cord injury,” Kale told Healthline. “The hardest part of recovery has been the mental aspect. Initially, it was incredibly difficult to comprehend the severity of my condition and to realize that my life had changed forever.”
“I couldn’t believe a disease so horrific could flip my world upside down like it did,” he added. “I yearned to return to my previous, healthy life. With time, that extreme yearning has somewhat subsided. However, I still become upset and nostalgic about my previous life from time to time. Recovery is just as much mental as physical.”
Kale has a C6 incomplete spinal cord injury, which means that he retains some feeling below the sixth cervical vertebra.
“Every muscle below my shoulders is affected in some way,” he said. “I have weakness in my triceps, hands, trunk, and entire right leg. AFM and other spinal cord injuries are brutal afflictions.”
“I have endured 3 1/2 years of continuous, intense therapy, multiple infusions, two nerve transfers, and one tendon transfer,” he added. “The treatments have been extremely taxing physically and mentally, but no one said these illnesses were easy to overcome.”
Kale said he exercises daily not only because it helps him to become stronger but also because it’s a great stress reliever. He rotates between strengthening his upper extremities and doing cardiovascular workouts on an elliptical trainer.
Three times a week he attends therapy and exercises in a pool and on a treadmill. He also uses a robotic walking exoskeleton to strengthen and improve the quality of his gait.
“Therapy is basically my part-time job,” he said.
Dr. Kim Bjorklund uses nerve transfer surgery to help young children, even infants.
A member of the plastic and reconstructive surgery department and the Center for Complex and Craniofacial Disorders at Nationwide Children’s Hospital in Columbus, Ohio, she’s also director of its brachial plexus program.
“I perform nerve transfer surgeries for children from early infancy to teenagers with brachial plexus injuries and nerve damage to the arm and hand to improve their movement and feeling,” Bjorklund told Healthline. The brachial plexus is a nerve network that controls movement and sensation in the arm, shoulder, and hand.
“These surgeries can help patients lift their shoulders, bend their elbows, and grasp with their hands. Sometimes additional surgery is needed to move tendons to help add strength and other movements,” she added.
“As AFM has been on the rise internationally, we are seeing these patients and are hopeful that our current techniques in nerve transfer surgery will also be successful for this devastating paralysis,” she added.
Nerve transfer is not a new technique.
Wolfe said the pioneers of nerve transfer surgery did their research in the early 20th century. This surgery wasn’t widely available during the polio epidemic, he said, so there are no known records of these techniques being used to fight the effects of polio, which is like viral-induced AFM.
The widespread use of nerve transfer surgery began in the 1970s for traumatic injuries of the brachial plexus, Wolfe said. He has performed several hundred nerve transfer surgeries over nearly three decades.
“I would consider myself a pioneer in adopting these techniques for use in acute flaccid myelitis,” he said.
Several residents and fellows who trained with Wolfe now specialize in this type of surgery at academic centers across the country. In addition, he has trained medical students, residents, and fellows at HSS, and has taught surgeons nationally and internationally in continuing medical education courses for 29 years.
Kale said he met Wolfe during one of the toughest times of his life.
“I didn’t care about 8- to 10-hour surgeries or the two years of therapy that would follow,” Kale said. “I just wanted my hands back.”
“Dr. Wolfe was confident he could do it. I was hopeless, and he was my glimmer of hope,” he added. “So, I went through with the surgeries. Also, I am an aspiring physician, and Dr. Wolfe serves as a role model to me. He has incredible patient care skills. He knows he’s treating patients, like me, who are struggling and nearly hopeless. Yet, he enters the room with a smile and a determination to solve any problem thrown his way. He’s the epitome of a true leader.”
Wolfe calls nerve transfer surgery “revolutionary.”
“It uses all or portions of fully functioning nerves to return function to non-functioning nerves and paralyzed muscles,” he said.
The result: Paralyzed muscles begin to respond to brain impulses again and progressively strengthen, he said. This allows flail joints — joints with loss of function caused by loss of ability to stabilize the joint in any plane within its normal range of motion — to move on command again, and to restore function to the arm and hand.
“There is generally no donor deficit or loss when all or a portion of a working nerve is transferred to a nonfunctioning nerve or muscle,” Wolfe said. “Thus, a disease that affects the spinal cord can be largely overcome by directly rewiring paralyzed muscles.”
Hyder said she’s grateful to the Shriners Hospital occupational therapist and physician who told her about Wolfe and HSS.
“We would never have known,” she said. “We would have missed that window of opportunity for surgery. Without it, Kale would not be functioning as he is today. Think of everything you do with your hands. He couldn’t do them. But he can now.
“What Dr. Wolfe did for Kale is absolutely amazing. He gave him his independence,” she added.