STEVE INSKEEP, Host:
NPR's Jon Hamilton has the story of one woman's search for a cure.
JON HAMILTON: People with trigeminal neuralgia tend to have vivid memories of their first severe episode. Sandra McGee was taking a shower.
SANDRA MCGEE: I just jumped up, you know, and fell against the wall. And I started screaming because I was being electrocuted in the shower.
HAMILTON: McGee says it felt like the right side of her face had been connected to an electrical outlet. The pain started about an inch above her upper lip.
MCGEE: And it was ricocheting back and forth to my eye and just kept going back and forth.
HAMILTON: That changed as flashes of pain became more frequent and she realized they could be triggered by almost anything: a gentle touch, a drop of water on her cheek, even a smile.
MCGEE: I couldn't be happy. I couldn't be sad because those are all the emotions that you use with your face.
HAMILTON: Trigeminal neuralgia is rare. It affects only about one out of every 15,000 people. But Neil Martin, the chair of neurosurgery at UCLA, says when it does strike, it can be devastating.
NEIL MARTIN: In years past when we didn't have effective treatments, it was severe enough that some patients would commit suicide to escape the pain.
HAMILTON: The pain comes from the trigeminal nerve, which carries sensory information from the face to the brain. There's a place near the brainstem where the trigeminal nerve can get pinched by a blood vessel. Martin says as the blood vessel expands with each pulse, it exerts pressure.
MARTIN: And that pressure, with every heartbeat on the nerve, causes a grinding down or a wearing away of the insulation, the myelin sheath on the nerve fibers, and the patient gets short-circuiting within the nerve. So normal sensation like touching the face becomes distorted into a tremendous flash of pain.
HAMILTON: Sandra McGee was pretty sure she had trigeminal neuralgia, but she still agreed to have a root canal redone to see if that would help. She also tried taking powerful painkillers.
MCGEE: And so I took them like every eight hours. And then it got to be like every six hours, then four hours, then three hours, and I was taking way too much.
HAMILTON: So a few months ago, McGee decided it was time to try something else.
MCGEE: I called my insurance and told them what I had and what I need and how bad I need it. And so they recommended me to Dr. Neil Martin at UCLA.
MARTIN: I first met Sandra in early August, and when I saw her, she was having up to 100 episodes a day of sharp, shooting, stabbing electric-shock- like pain. She was in absolute agony. It was completely disabling.
HAMILTON: Martin told McGee that surgery was her best hope for permanent relief. He says the surgery still carries risks, but it's become steadily safer and more effective over the years. One major reason is new technologies that create detailed, three-dimensional images of a patient's brain. Those images make it easy for surgeons to plan an operation.
MARTIN: Okay. We're going to use this electrical drill now to make a small opening in the skull, right on the mastoid.
(SOUNDBITE OF DRILL)
HAMILTON: Martin's surgery on Sandra McGee was recorded on video. He gently teases apart layers of tissue as he works his way toward the brainstem. Within a few minutes he's exposed the problem.
MARTIN: There it is. It just popped out.
HAMILTON: A pulsing red blood vessel has actually worn a visible groove in the white fibers surrounding the trigeminal nerve.
MARTIN: It's just wedged right under there, as tight as you would ever see it. And now it's - instead of being under and trapped between the nerve and the brain stem, now it's above the nerve and free.
HAMILTON: Martin says at this point in the surgery, he was pretty sure he'd solved the problem. But he wouldn't know for sure until his patient regained consciousness. He and McGee have remarkably similar memories of that event.
MARTIN: She, in the recovery room, woke up quickly.
MCGEE: When I woke up, the first thing that I did is my hand went right to my face.
MARTIN: She still had that look of tension on her face.
MCGEE: Because I knew all my trigger points, and so I was just touching the right side of my face like a crazy woman.
MARTIN: She was making a series of faces that used to cause the pain.
MCGEE: Just to see if it was gone, and it was gone.
HAMILTON: Jon Hamilton, NPR News.