Doctors are pioneering a special surgery to help children regain movement in limbs paralyzed from a rare, polio-like disease.
Nerve transfer surgery, typically done for patients suffering traumatic injuries to their spinal cord, is being performed on patients who have acute flaccid myelitis (AFM), which has affected at least 80 children across the U.S. this year.
“I think it’s pretty new,” said Dr. Scott Wolfe, a hand and upper extremity surgeon at the Hospital for Special Surgery in New York, of the surgical procedure.
Dr. Wolfe and his colleagues in August published a case study in the journal Pediatric Neurology on two patients on whom they successfully performed nerve transfer surgery. Both patients had partial paralysis in their upper extremities after a bout with AFM.
Two other cases recently made headlines of young patients regaining mobility in their limbs after nerve transfer surgery. In California, a 4-year-old girl received a nerve transfer surgery in her right arm to regain feeling, and in St. Louis, an 8-year-old boy is recovering from a nerve transfer surgery to his legs.
“I used what they have,” Dr. Amy Moore, a nerve surgeon from the Washington University of St. Louis, told CBS affiliate KMOV about the surgery on the 8-year-old. “They were wiggling their toes, and so I was able to move a nerve that wiggles the toes to the hips.”
Acute flaccid myelitis causes weakness or loss of function in the arms and legs, especially in children.
Nerve transfer surgery is an increasingly viable option for patients who have traumatic ruptures of their nerves from the spinal cord, especially those that effect the upper extremities. The surgery requires taking a graft of existing working nerves and transferring it to the “dead” nerves and rebuilding that connection.
However, the technique is underused in cases of children with AFM. The disorder is rare, about 1 in 1 million people are diagnosed, but doctors and health officials have recorded an uptick in cases since 2014, with more than 400 people diagnosed — mostly young children.
The federal Centers for Disease Control and Prevention are investigating about 139 suspected cases of AFM that were reported from August to October.
The disease is believed to be triggered by the respiratory illness enterovirus D68 (EV-D68). An outbreak of the virus in 2014 was associated by an uptick in cases of AFM that year. Many children who presented upper or lower limb weakness or paralysis also reported having a cold- or flu-like illness previously.
Available treatments have had little impact on staving off the course of disease. Very few patients fully recover, either retaining residual limb weakness or complete paralysis.
Dr. Wolfe said nerve transfer surgery is something that children diagnosed with EV-D68 associated AFM should consider as soon as possible.
“I would say the message should be to any pediatrician or neurologist who’s taking care, or who is hoping that something can be done, please try to get these kids into the hands of a nerve surgeon who does these nerve transfers as soon as possible,” he said.
The ideal time is when the patient is stable and between three and six months after the illness has been contracted. Anything longer than that could threaten viable, healthy nerves, he said.
“Once nine months goes by it gets much, much harder, [the surgeries are] much less likely to succeed,” Dr. Wolfe said.
Where trauma such as from an accident, fall or injury can sever spinal cord nerves completely, EV-D68 associated AFM can affect some nerves while leaving others intact. For a nerve surgeon, it’s a delicate balance to find the ones that work and connect them with the ones that don’t, Dr. Wolfe said.
“You have to be very creative in terms of using even remaining nerves and muscles that are there, without making the patient worse. It’s a bit of an art and no two cases are going to be the same and you use what you can,” he said.
Nerve transfer surgery is increasingly popular for the issue of paralysis in the upper extremities, but is more difficult for the lower portion of the body, he added.
“Yes, we’ve done nerve transfers in the lower extremity, but I would agree with Amy Moore — that it’s probably 10-to-1, even 50-to-1 nerve transfers in the upper extremity versus the lower,” he said.
The two patients Dr. Wolfe and colleagues treated both had paralysis to their upper extremities but also had experienced severe illness, with one patient — a 14-year-old girl — deteriorating to respiratory failure and having to be put on a ventilator.
She arrived at the Hospital for Special Surgery nine months after her initial illness with persistent weakness in both shoulders and arms.
Ten months after her initial surgery she regained full movement in her right elbow, and on her left arm, while she still had some weakness, was able to flex all her fingers fully. Another surgery was performed to improve functioning in her left arm.
“She can tip pinch to index, middle, and ring fingers, make a full fist, and can comb her hair independently and bimanually for the first time in nearly three years,” Dr. Wolfe and colleagues wrote in their report.