MADISON, Wis.—Trigeminal neuralgia has been called the most painful disorder known to neurology—and those who have suffered the lightning-flash of facial nerve pain say it’s no exaggeration. But some patients find relief through neurosurgery, a drastic step but one that can instantly cure a condition that can quite literally ruin lives.
Neurosurgery Today estimates that 45,000 people in the United States suffer from TN, also known as tic douloureux, although the actual numbers may be higher due to frequent misdiagnosis. Because the trigeminal nerve branches into three parts to carry signals for the scalp, face, nose, mouth and every tooth, it can appear that these areas are the source of the pain.
“Sometimes patients have had their teeth removed in an attempt to stop the pain,” says Dr. Robert Dempsey, a UW Health neurosurgeon and chairman of the neurosurgery department. “People should have their teeth checked first, but if it is truly a case of trigeminal neuralgia, the root of the pain isn’t in the mouth; it is at the base of the brain.”
The disorder results from a cranial nerve that becomes irritated nerve when its insulating myelin sheath is damaged. The insulation can be damaged by pinching from blood vessels; other causes include a tumor on the nerve or multiple sclerosis.
Eating, sneezing, and even a light breeze on the face can trigger an attack of stabbing pain that shoots along one side of the face, sometimes into the eye, ear or mouth. Patients can suffer dozens of episodes a day, but they also have periods during which the condition goes away.
“It’s like being connected to a lightning machine; it hits you fast and so hard that it will snap your head back,’’ says one Wisconsin man who suffered 12 years of root canals, other dental procedures, and chronic pain before his trigeminal neuralgia was correctly diagnosed and treated at UW Hospital and Clinics.
The 48-year-old man, who didn’t want his name used, says he was taking many times the recommended dose of acetaminophen, along with large amounts of prescribed oxycodone, all to numb the pain of the facial nerve disorder. He also drank heavily to try to reduce the pain.
“It puts you in a dark place,’’ he says. Sometimes he was in so much pain he would punch himself in the face to try to make it stop.
In 2007, he sought help from Dr. Dempsey, who first prescribed anticonvulsant medication. These drugs, most often used for epilepsy and similar disorders, are among the first lines of treatment, as are tricyclic antidepressants.
But while the medications initially brought some relief, the pain flashes returned as strongly as ever, so Dempsey decided to operate. In September, he opened the skull behind the ear, freed the nerve from the surrounding blood vessels, and insulated it by inserting Teflon and Ivalon. The procedure is called microvascular decompression.
“Patients may find that the relief is immediate and remarkable,’’ Dempsey said.
The patient agreed. In the recovery room, he found he could no longer trigger the pain flashes by touching his chin. The operation changed his life.
Dempsey says that microvascular decompression isn’t appropriate for all cases of the disorder. If the condition has other causes, such as multiple sclerosis, or if the patient can’t tolerate brain surgery, it might be more appropriate to try other methods, such as using drugs, heat or radiation to numb part of the nerve.
In all cases, more conservative treatments should be tried first.
The patient said he is just grateful to be able to live a normal life, without the fear of crippling pain that seemed to come out of nowhere. He even looks better, he says, because the disorder caused a tic that distorted part of his face.
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