“I don’t want everybody to see my face,” the 64-year-old woman told her mother-in-law over the phone. She wanted to cancel the Zoom that had to stand in for their usual holiday get-together. It was December 2020, and thanks to Covid-19, no one was traveling. When she finally agreed to participate in the video gathering, no one mentioned the strange changes that were so obvious.
In retrospect, it was clear to the woman that her face had been changing for more than a year. The first hint came the previous winter. At a massage, before the pandemic shut everything down, the left side of her face hurt when she put it on the cushion. She had to move around to get comfortable. It was odd, but she didn’t give it much thought — at least not then. A few months later, her left eye started to feel irritated and watered all the time. She, like everyone else, wore a face mask whenever she left the house, so initially she figured the mask was somehow chafing her eyelid. But no matter what kind of mask she wore or how she positioned it on her face, the tears and irritation persisted.
By late summer, she could see that the face she knew so well was changing. Sure, she was getting older, but it was more than that. The lower lid of her left eye sagged, and the edge was red and looked irritated — even when she hadn’t worn a mask for days. And her smile was different, crooked. Her whole mouth seemed pulled over to the right, as if the left side had just given up. That side of her face now looked flat and droopy, like her eyelid.
She went to see her primary-care physician, who sent her to a neurologist. The neurologist asked her to raise her eyebrows and then to smile. The woman knew from her own experiments in front of the mirror that her left eyebrow didn’t go up and that when she smiled, the left side of her mouth remained unmoved. This looks like Bell’s palsy, the neurologist said. The drooping is caused by an inflammation of a related nerve — often because of a virus. The source of the injury, however, is rarely identified. It can take weeks, occasionally months, for the nerve to start to recover. But, the specialist assured the woman, faces recover — returning often, but not always, back to normal.
She would need an M.R.I. to make sure there wasn’t anything else going on. Sometimes a brain tumor could press on the nerve, causing these same sorts of changes, and missing that would be disastrous.
There was no mass on the M.R.I., the specialist assured her after viewing her results. This was Bell’s palsy.
“Just Give It Time”
She waited for months, but saw no improvement. A friend wondered if this could be a symptom of Lyme disease. That could cause a facial droop, she was told. She called her primary-care doctor. Could he test her for Lyme? He did, and the test was negative. Just give it time, he urged. She did, but her face remained strange. It was affecting her work. She was an illustrator, spending hours bent over the paper and colored pencils she still used in her craft. When she looked down now, the tears that collected in that lower lid distorted what she saw. And when she ate, she often bit her lip. She was a good cook. She loved food. But eating was becoming a chore.
Worst of all, she felt embarrassed about her lopsided face. She was always an attractive woman. She modeled when she was younger. Now she was grateful that the pandemic limited her social activities.
After the holidays, she called her primary-care doctor again: Could he test her for Lyme again? She’d read that the test wasn’t very good, and her face was still strange and droopy. That test was negative, too. She went to a “Lyme literate” doctor. He did some special tests that he said could pick up hidden Lyme infections. When his test was positive, he prescribed several antibiotics to take for four months. She took them dutifully, but they didn’t help. If she did have Lyme disease, it wasn’t what caused her face to droop. The neurologist ordered a second M.R.I. — still no mass. It had been almost two years since her face started to change. The neurologist wasn’t sure what was going on. Usually a Bell’s palsy started to improve after a few weeks. Recovery might not be complete, she explained, but she wasn’t sure why this woman’s face hadn’t improved at all.
That fall, a friend told the patient about a clinic at New York University that specialized in facial palsies. She quickly found it on the internet: the Facial Paralysis and Reanimation Center. She studied the faces of the doctors at the clinic. Dr. Judy Lee was a specialist in disorders of the ear, nose and throat and a plastic and reconstructive surgeon. She had a warm smile and a kind face. The patient made an appointment to see her.
Lee listened to the woman’s story. She too questioned the diagnosis of Bell’s palsy. Although the patient’s symptoms were consistent with Bell’s, the story didn’t quite fit. That type of nerve damage comes on quickly — usually over hours, sometimes days. This woman described a process that took months. The two M.R.I.s proved she hadn’t had a stroke — the most common cause of a droopy cheek and lip. Shingles could also cause this sort of palsy, but the patient didn’t have other symptoms of the illness so that seemed unlikely. Lee ordered yet another M.R.I. She, too, was worried about a mass, and she had only seen the reports of the previous M.R.I.s.
A Brightness in the Nerve
Lee presented the new M.R.I. to her colleagues the following week. It was a meeting they held monthly to discuss the toughest cases. The neuroradiologist pointed out a brightness in the nerve that looked like inflammation. It was at the point after the nerve passes through the inner ear and enters the temporal bone, on its way to the muscles of the face. That’s not where you would usually see inflammation in Bell’s palsy. Moreover, that type of inflammation, caused by injury to the nerve, should be healed after a year and a half. And there was still no visible mass. Was this brightness, this inflammation, evidence of a tumor? Probably, the team agreed. They just had to find it. The patient needed a biopsy. If a tumor was visible, they would have their diagnosis. And, no matter what else they saw, they would biopsy the nerve itself.
Lee called the patient and explained what they proposed. “We can’t see anything, but we know it has to be there,” she said. A biopsy would show exactly what they were up against. The patient was reluctant. If you can’t see anything, she asked, why do you think it’s there? Because, Lee explained, nothing else makes sense.
The surgery took place a few weeks later. In the operating room, Dr. David Friedmann cut away the bone behind the ear. He identified the nerve and traced its course as it made its way toward the facial muscles. No mass was visible anywhere. He cut out a few tiny segments of nerve. Testing indicated that the nerve was already dead, but he didn’t want to risk causing any additional injury. Friedmann sent the samples to the lab. The answer came back within the week. She had a squamous-cell carcinoma growing in her nerve.
That answer provoked more questions. Where had this come from? It was unlikely to have started there in the nerve. Was it spread from a skin cancer, one of the most common forms of squamous-cell carcinoma? The patient had several skin cancers removed when she was younger, so that was possible. Still, squamous cells are found almost everywhere in the body. The doctors at N.Y.U. ordered a PET scan. There was no sign of cancer anywhere else.
Even so, the cancer cells in her facial nerve had to have come from someplace. As the doctors well knew, just because a cancer isn’t seen doesn’t mean there’s no cancer. She was treated for what is called a metastatic disease with an unknown primary: She had radiation and chemotherapy that lasted until early this summer. But even before being treated for the cancer, she had an operation to fix her face. A muscle from her leg was carefully positioned over the atrophied muscle in her left cheek. It will take months for those muscles to start working to replace the ones destroyed by the cancer. She realizes that the face she had known her whole life will never be back. But she hopes that the surgery, plus physical therapy, will at least let her smile again.
Lisa Sanders, M.D., is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries.” If you have a solved case to share, write her at [email protected]