Shocking facial pain often misdiagnosed, mistreated

Sixty-year-old Luis Gonzalez will never forget the first time he experienced the intense pain. It felt like mild electric shocks running along the right side of his face, from his throat to his temple.

At first, the shocks occurred a few times a month and he didn’t pay them much attention. But the attacks became more frequent, and Gonzalez developed a sharp pain in the throat and face. He went to see his primary care physician, who diagnosed him with allergies and prescribed medication.

The pain didn’t go away. “I woke up with a shooting pain in my upper molar,” he recalls. “I’ve never had a toothache in my life, but I went to the dentist, and he said I had perfect teeth and gums.”

The dentist prescribed a strong pain reliever, but it wasn’t enough. Another visit to the doctor led to even more pain medication, which dulled his sense of taste and took away his appetite. Worse yet, the pain was with him day and night.

Unwilling to give up, Gonzalez was referred to a neurologist, who diagnosed him with trigeminal neuralgia, a disorder originating from the trigeminal nerve bundle that runs through the face.

An estimated one in 15,000 people suffer from trigeminal neuralgia, although the actual figure may be higher due to misdiagnosis. While patients can identify triggers that bring on the pain—eating, brushing the teeth, even a light touch of the skin—at the onset the pain can be unpredictable.

In a majority of cases, symptoms appear after age 50, as with Gonzalez, and the condition is more common in women than men. Most often, in the absence of actual pain, many patients undergo a normal neurological exam, making a proper diagnosis challenging. Any symptoms experienced by younger patients, or felt on both sides of the face, may require imaging tests, such as an MRI.

Gonzalez’s first neurologist increased his pain medication but advised him that he would have to live with the discomfort, he says. But the medicine made him sick, and a second medication—one used to treat epilepsy—caused weakness and trembling in his legs. “I ended up very depressed, and I’m not a depressed person. I just didn’t know what to do,” says Gonzalez.

Another referral brought Gonzalez to Dr. Kenji Muro, a neurosurgeon at Advocate Illinois Masonic Medical Center, who has been treating an increasing number of patients with the condition through surgery. “Trigeminal neuralgia is a challenging condition to recognize due to its low incidence and the broad differential diagnosis for pain in and around the face. It may be misdiagnosed as dental, jaw or sinus problems, or even migraines,” says Dr. Muro.

“In Luis’s case, a blood vessel loop was causing pressure on the trigeminal nerve. When it became clear that his condition wasn’t helped with medication, we surgically relieved the pressure on the nerve, in turn relieving the pain.”

Dr. Muro says more patients are coming to him for pain related to trigeminal neuralgia, in part because of increased awareness of the disorder and the ability to treat it surgically. He stresses that the first line of therapy is medication, but for patients with unmanageable symptoms or who suffer medication side effects, surgery may be the answer. The various surgical options depend on the patient’s health and the severity of the symptoms.

As for Gonzalez, he has been free of pain—and medication— since his June 2012 operation. “I’m amazed. I’m like a different person now,” he says. “It’s like a miracle.”