An innovative and complex surgery involving nerve transfers is restoring hope and transforming lives torn apart by a mysterious and devastating illness. Acute flaccid myelitis, also known as AFM, strikes without warning, shows no mercy and frequently results in paralysis.
Most affected patients are children, and nearly all have partial or complete loss of muscle function in their arms or legs. Dr. Scott Wolfe, an orthopedic surgeon specializing in nerve injuries at Hospital for Special Surgery (HSS), has restored arm movement and function in a number of young AFM patients previously told their paralysis would be permanent.
The journal Pediatric Neurology published two AFM case studies by Dr. Wolfe and colleagues. The article was made available online in the summer of 2018, in advance of final print publication in November 2018. The report documents patients, ages 12 and 14, who had suffered partial paralysis and regained movement in their arms after nerve transfer surgery at HSS.
Acute flaccid myelitis
"We published the case studies to raise awareness in the medical community," said Dr. Wolfe. "Since the procedure is so highly specialized and performed by very few surgeons, most people, even doctors, are unaware that nerve transfer could potentially help AFM patients. But there is a window of opportunity, and the surgery should ideally be performed within six to nine months of disease onset."
Cases of acute flaccid myelitis, which is considered a subtype of transverse myelitis, have been on the rise in the United States since 2014, according to the Centers for Disease Control and Prevention.
The illness, which is most common in children and teenagers, appears to occur after a viral infection. Within a day or two, inflammation within the spinal cord leads to muscle weakness and rapid, progressive paralysis of the arms and/or legs. In 2014, and again in 2018, a disturbing spike in cases was reported in certain regions of the United States.
Patients suffer different degrees of paralysis, and while some regain function, many suffer some degree of permanent paralysis. No nonsurgical treatment has been shown to be effective.
At age 15, Kale Hyder of Davenport, Iowa was not only the picture of health but an accomplished athlete. At 6-foot-two, the active teenager played on his school's basketball team and on an elite traveling team in the summer.
One day in June 2015, he woke up with a stiff neck and asked his mother for a new pillow. By the next day, he could not move his arms and could barely stand up. His mother rushed him to the emergency room. Soon after, he was paralyzed from the chest down.
Kale was diagnosed with transverse myelitis. After days and months had passed, Kale and his family were shocked to receive a terrible prognosis. "We went to an excellent neurologist in the Chicago area, and he said, 'I'm so sorry, you are not going to regain function of your hands.'
It was devastating, I will never forget receiving that news," recalls Marcy Hyder, Kale's mother. "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."