In February 2018, 32-year-old Leah Perkins boarded a flight bound for a family vacation in Florida feeling her normal self. Upon landing, she felt an excruciating, shock-like pain in her face and jaw.
A young professional and mother of two, Leah described the sensation as jarring and incapacitating.
“I’ve never been electrocuted,” she said. “But I’m thinking that’s what it feels like.”
After an emergency visit to the dentist and the family’s endodontist, doctors were unable to identify the source of pain. While she didn’t have a solution before returning home, a visit to her local dentist resulted in a total of three root canals within two weeks. And though she didn’t know it at the time, the relief she felt after the procedures was temporary.
As it turns out, trigeminal neuralgia pain, particularly early in the course of the disease, can subside spontaneously. For that reason, TN patients who are inappropriately diagnosed with other conditions can sometimes experience transient “relief” with various therapies, but that relief is inevitably fleeting. The reason for this waxing-waning pattern of pain in some patients is unknown. The oddest part of this diagnosis is that this can occur, but it is not really understood how or why it happens.
Fast forward just shy of a year, the pain returned on January 5, 2019. Her dentist performed one more root canal on the remaining tooth in the lower left side of her mouth; however, this did not provide the pain-free outcome that was expected. Instead, the pain intensified and began to affect every aspect of her life. There were days she had to leave work early when the pain became unbearable. It was difficult to talk, eat or swallow, and, at times, made it difficult to be there for her family.
The shocking diagnosis that lead to relief
When both her dentist and the referring endodontist couldn't pinpoint the underlying issue, she was referred to Carolinas Medical Center where she met with Joel J. Napenas, DDS, an oral medicine physician with Carolinas Physician Alliance.
A specialized MRI scan technique (“Fiesta”) revealed that the trigeminal nerve, which is located in the brain and extends through the skull to the face, was squeezed by arteries (blood vessels) in two places—that’s when her care team recommended she start basic drug protocols to help get a handle on the pain while more out-of-the-box options were investigated.
Desperate for answers, Leah planned to try anything suggested.
“There was no hesitation,” said Leah. “If they offered surgery, I knew I was on the table.”
That’s when Leah was sent to Tony Asher, MD, FACS, clinical director of Atrium Health’s Neurosciences Institute and neurosurgeon practicing with Carolina Neurosurgery and Spine Associates. Thanks to his vast experience with similar cases, he was able to confirm Leah’s condition as trigeminal neuralgia (TN) and approve her as a candidate for surgery, the closest thing there is to a cure for the disease.
A painful and rare disorder, TN produces symptoms often confused with tooth or jaw aches, headaches and migraines. Unlike these other ailments, however, TN pain originates in the brain and can be caused by an artery compressing the trigeminal nerve. Also unlike a toothache, pain with TN progresses in severity and intensity, and can quickly become debilitating if left undiagnosed.
According to Leah, those with TN can appear normal on the outside, but may be battling with pain every minute of every day. And because it is so rare, the symptoms can be confused with other issues and prolong the diagnosis.
“When I found out about it and how rare it was, it was overwhelming,” said Leah. “I was extremely lucky to have a team of doctors who knew about the disease and helped me find the answers, and so quickly. No matter what, I just knew, I had to get out of pain.”
According to Dr. Asher, extreme, electric shock-like pain leading to root canals, similar to Leah’s case, are classic occurrences with this disorder. Data shows there are fewer than 20,000 TN cases every year in the United States, but many are misdiagnosed because symptoms can be so easily confused with other ailments.
But while her symptoms were typical of other TN cases, Dr. Asher adds that her age of diagnosis was not. Most TN cases, he says, occur in individuals who are 60 or older.
“It’s very unusual for a young person to develop this disease,” said Dr. Asher. “But it does happen. I continue to be concerned that people don’t know what trigeminal neuralgia is and that effective treatments for this debilitating disease exist.”
While medications may help, surgery is the answer for many patients diagnosed with TN. Such was the case for Leah, who underwent microvascular decompression surgery to relieve the pain and pressure she had felt for so long.
During the procedure, Dr. Asher opened a small area in Leah’s skull to insert a sponge-like device (made of Teflon felt) between the artery and the trigeminal nerve. The sponge provides a barrier between the compressing vessel and the nerve, relieving TN-related pain.
Pain-free thanks to microsurgery
On April 17, 2019, Leah had surgery. When she woke up, she was pain-free for the first time in months.
Looking back, she describes the experience as surreal and humbling.
“I had just underwent brain surgery three days prior, but there I was enjoying meals, conversing with my family, and doing small activities,” said Leah. “I had my life back. And it just felt like I had stitches, not brain surgery.”
While the surgery that provided Leah relief may seem straightforward, it’s anything but, according to Dr. Asher. It requires a steady hand and tactical expertise gained through experience.
“If you do it the right way, people can get profound relief,” says Dr. Asher. “But it’s an operation that can really hurt people if performed in the wrong way.”
“Can’t stop, won’t stop”
Looking back, Leah says her care team at Atrium Health, including Dr. Napenas and Dr. Asher, as well as her family, are what helped get her through such a challenging time in her life.
“My husband stood by my side throughout the entire ordeal. And my parents, at my darkest hour, dropped everything and moved in with us to help,” said Leah. “I had so many who were there for me and motivated me towards that finish line – I can’t imagine being where I am today without all of those people coming together.”
Three months after brain surgery, she ran a 5K. She continues to see Dr. Asher for follow-ups, and attends physical therapy as she recovers from surgery.
More than anything, she hopes more people become aware of TN, so that others find the relief they need, when they need it most.
“The lesson is—this stuff happens,” said Leah. "TN is rare and it can happen to anyone, but it doesn’t define us. With knowledgeable doctors and a good support system, you can beat it and enjoy an amazing, long life. I know I will.”
