HOUSTON – It is described as one of the worst pains known to mankind, but doctors in Houston are helping sufferers find relief.
It's a burning, pulsating pain, almost like being struck in the face by lightening. It can be debilitating and more often than not, misdiagnosed and misunderstood.
Christine Scheve was a sophomore at the University of Texas in Austin when, out of nowhere, she said, "I woke up to this indescribable, terrible, terrible pain. The pain started in my cheek and went down to my teeth, which was confusing."
The pain became chronic.
"It's like a burning pulsating pain, 100 percent focused in one area," Scheve said. "You wouldn't know when it was coming. You wouldn't know how long it would last, but it would be the same intensity every single time."
So she went to a dentist for help.
"He did an emergency root canal and then the pain stopped, so I thought that was it," Scheve said. "It came back the next day and it continued to come back, so we knew something was wrong."
Then she had a second root canal. There was still no improvement, just unrelenting pain.
"I never knew when it was coming," Scheve said. "It could be during the day, during class, during sleep. No matter what, it would stop my life. Everything would revolve around it. It was horrible."
Finally, a dentist in her hometown of Lake Livingston diagnosed Scheve with a nerve disorder called trigeminal neuralgia.
UTHealth neurosurgeon Dr. Dong Kim is director of the Mischner Neuroscience Institute at Memorial Hermann - Texas Medical Center.
"When there's a blood vessel that is near the nerve that comes into contact with it and it starts pulsating on the nerve, those pulsations can trigger the nerves to fire which our brain interprets as pain," Kim said. "This is one of the worst pains known to us."
Kim said he sees about four to six patients a week in the trigeminal neuralgia clinic.
It's estimated one in 15,000 people suffer from it, but that number may be higher because it's so often misdiagnosed.
Kim added, "It does get more frequent, more intense and the average time that I see a patient suffering from this is probably about seven years."
After five long years, Scheve was referred to Kim, who told her she didn't have to live this way.
Scheve underwent surgery to move the artery off the affected nerve and pad it with a tiny piece of Teflon felt.
Kim explained, "It covers the nerve so no other artery can touch it ever again, and it's curative for almost all of the patients."
"When I woke up, I was just sitting there in fear for about 24 hours, waiting for (the pain) to come and it didn't, so I knew something was different. It was an amazing feeling," Scheve said.
It's been two years and Scheve has been pain-free. She recently got married and is pursuing a doctoral degree.
"I sure look at life differently," Scheve said. "I appreciate absolutely every aspect of it now."
Doctors said trigeminal neuralgia is often misdiagnosed as tooth pain or temporomandibular joint disorder (TMJ). The pain can be triggered by touching the face, brushing teeth, even a kiss.
The risk increases as we age, but Kim has seen patients as young as 13 years old.
To learn more about the condition and treatments available, visit UTHeath's Trigeminal Neuralgia's website.