Jessica Erickson’s Johns Hopkins surgeons had never seen such nerve damage in a child. An MRI had confirmed the diagnosis, but only surgery would reveal the extent of her rare disorder and finally explain a near lifetime of facial pain.
“We were the end of the line for this family,” says Jessica’s neurosurgeon at Hopkins Children’s, Edward Ahn. “They had nowhere else to turn. We had the OR, the infrastructure and the pediatric specialists to help this child.”
Eight years earlier, in her home state of Connecticut, Jessica developed an infection in her left ear. The 3- year-old was treated with antibiotics and received ear tubes to help clear the infection. Soon after, the tube fell out and the left side of her face appeared to droop. Three days later she broke out in a rash and complained of facial pain. Repeat surgeries to treat what appeared to be reoccurring ear infections had similar results. Tubes and antibiotics would fail, her face would droop and then the facial pain would return.
Looking for answers and relief for her daughter, Valerie Erickson took her to a neurosurgeon. “He told me that her MRI didn’t reveal anything and that she should see a psychiatrist,” she says, recalling the bitter moment.
Years of additional fruitless endeavors at various medical institutions (including Yale and Children’s Hospital of Philadelphia) to end the child’s pain, and explain the occasional facial palsy, included the insertion of a marcaine pump. “They told us that easing the pain could help the nerves reboot themselves,” says Valerie. “But when they took her off the morphine, the pain returned.”
Ongoing extensive research on the Web led Valerie to believe her daughter might have geniculate neuralgia (a condition of the nerves known to cause exquisite, unrelenting pain). Although she was told the condition does not affect children, she persevered and found an expert at the University of Pittsburgh who performed a microvascular decompression surgery known to relieve the pain in adults. The hospital, however, was not accredited for the surgery in children.
It was then, says Valerie, that “Hopkins saved us. We contacted them and they said they could help.”
In the Hopkins Children’s OR, Ahn teamed with neurosurgeon Michael Lim. After making an incision behind Jessica’s left ear, they removed part of her skull, relieving tremendous pressure on the surrounding tissues and nerves. Years of inflammation, possibly brought about by a virus contracted around the time of her ear infection at age 3, had left her nerves badly scarred. Ahn and Lim removed the scarring and teased apart a profound tangle of nerves and arteries. Into the empty space now freed around the nerves, they packed in little plastic “pillows,” says Lim, to reduce the pressure on neighboring blood vessels. Then they cut the nervus intermedius, a tiny nerve that controls sensation around the ear and is an off-shoot of a larger one that controls facial function.
“Not many people do this kind of surgery,” says Lim, of their delicate vascular decompression neurosurgery. “By cutting that tiny nerve we eliminated Jessica’s pain.”
Ahn and Lim plan to write about the case. “It was fascinating,” says Ahn, of the case that attracted a large following among their peers. “We’d never seen anything like it in a child.”
For Jessica, 11, relief from what she described as the sensation of “an ice pick through my ear” was a novel sensation. “I don’t remember ever feeling this way,” she said, the day before she left Hopkins.
“They’re our heroes,” says her mother of Ahn and Lim and the medical team at Hopkins. “My daughter can now have a childhood. I can’t remember ever seeing her smile like this. It’s a miracle.”