“I've had several surgeries, some of them pretty significant, and this was the best experience of them all.”
When Tom Murray suddenly started experiencing a piercing pain in a tooth on the right side of his face in August 2020, he turned to his dentist, naturally. She took x-rays, ground down the painful tooth, and provided him with pain medication. None of it helped. In fact, Tom's pain, which he describes as a "burning sensation" that lasted around 20 seconds at a time, intensified.
Ultimately, the dentist referred Tom, who lives in Newtown Square, to an endodontist, thinking he may need a root canal. The endodontist said he didn't. After another week of wrestling with the pain and constantly anticipating the next flare-up, Tom saw another endodontist and insisted on a root canal.
The day after the procedure, the pain was back.
At his wit's end, Tom next asked an oral surgeon to pull the tooth. He told Tom he could, but it wasn't going to change anything. As soon as the anesthetic wore off, the pain would come rushing back.
But the oral surgeon did have a theory. He suspected the pain had nothing to do with the tooth. Rather, he believed Tom was suffering from a condition called trigeminal neuralgia, which causes intermittent but intense pain on one side of the face. It affects the trigeminal nerve, which carries signals from the face to the brain. Consequently, a light touch can trigger a painful jolt, although the pain is mostly unpredictable. For Tom, eating and brushing his teeth were nearly impossible to negotiate without setting off a debilitating chain reaction.
Tom shared the oral surgeon's theory with his family doctor. His doctor told him they could be certain it was trigeminal neuralgia if the anti-epileptic medication he prescribed him, carbamazepine, worked.
Shortly after taking his first dose, Tom's pain vanished.
But this relief would prove to be a brief lull in a winding, grueling journey that led him to one of the few people who could truly help him, Penn neurosurgeon John Y. K. Lee, MD, MSCE.
Getting ahead of the pain
Tom remained on the carbamazepine, one 300 milligram pill a day, for the next six months. And then a neurologist he began seeing shortly after his diagnosis gradually weaned him off the medication. Still pain-free, his trigeminal neuralgia appeared to be in remission, the neurologist told him, though she couldn't say how long it would last.
The condition is largely a mystery in that regard. No one can say with any certainty what causes the pain to recede and re-emerge.
An MRI showed a blood vessel rubbing against Tom's trigeminal nerve, causing it to become overly sensitized. Now 70 years old, he says he never experienced any pain in the tooth in question or the immediate area around it prior to the summer of 2020, nor has he had any nerve-related pain anywhere else. An avid runner, he was, otherwise, in good health.
Tom, a retired executive of a database marketing company, cautiously returned to the normal rhythms of his life. Just as the shooting pain in his tooth was finally becoming a faded memory, it came back–nearly a year to the day after he'd stopped taking the carbamazepine.
His neurologist immediately put him back on the medication, but this time it wasn't putting a dent in his pain. Over the next several weeks, she increased his dose to 10 times the original level. Still nothing.
She started him on a new medication, oxcarbazepine, and sent him for blood tests because the carbamazepine can deplete sodium levels and Tom had been feeling increasingly woozy. Sure enough, his sodium had bottomed out. He spent a weekend in the hospital on a sodium drip.
While he was there, a neurologist at the hospital took him off all medications. When the pain inevitably filled Tom's mouth, he recommended another medication, gabapentin.
"It was a miracle," Tom says. "I took three pills a day, every eight hours, a fairly low dose, and I essentially had little pain."
Within two weeks of starting the gabapentin, he says his pain was completely gone. And that remained the case, even as his neurologist gradually reduced the dose to one pill a day.
But Tom was already anticipating this peace would be short-lived. After some research online, he discovered that a surgery called microvascular decompression is considered the gold standard treatment for trigeminal neuralgia.
Over the coming weeks, Tom met with neurosurgeons across the Mid-Atlantic region.
"I didn't really want to go outside of this area if I could prevent it," he says. "More importantly, I wanted to find the person who had the best track record with this surgery at the highest frequency."
That pursuit ultimately brought him to Dr. Lee.
Pinpointing the (microscopic) problem
The key, according to a pivotal study, to maximizing the success rate with microvascular decompression is pinpointing the precise spot where the trigeminal nerve is compressed. This has become relatively easier with the development of microsurgery, but it can still be a challenge, researchers noted in a 2020 study, particularly when the infringement occurs toward the front of the nerve.
An endoscope, which provides panoramic views and bright lighting–vastly improving visibility–has revolutionized the surgery. But because of the high degree of difficulty, Dr. Lee says relatively few neurosurgeons do it this way. He is a member of that select group, estimating that he's performed nearly a thousand endoscopic microvascular decompressions during his 18 years at Penn.
He sees himself as furthering a proud tradition, where Charles Harrison Frazier, the chairman of the Department of Surgery at the University of Pennsylvania from 1922 to 1936, devised a surgical procedure that was used to control the pain of trigeminal neuralgia.
When Tom met with Dr. Lee on May 27, 2022, Dr. Lee told him to stick with the gabapentin as long as it was keeping him pain-free. In fact, Dr. Lee says that he won't consider intervening in any case of trigeminal neuralgia where medicating remains an option. Should that change, Dr. Lee told him, come back and see me.
"I was just really impressed with his knowledge, his demeanor," Tom says.
Tom went into remission again that September. "Just for kicks," he says, he set a reminder for himself in exactly a year. Sure enough, the pain returned on September 1, 2023.
He immediately went back on the gabapentin, but, similar to the carbamazepine, it had no effect this time. Ten days after the first burst of excruciating pain, Tom felt an entirely new degree of pain. And this time, the jolts repeated at regular intervals, which had never happened before.
He writhed on the floor.
Tom saw Dr. Lee again shortly after that day and underwent an endoscopic microvascular decompression a week later at Pennsylvania Hospital.
Dr. Lee, who is the director of Skull Base Surgery for Penn Medicine and medical director of Penn's Gamma Knife Center, says that Gamma Knife and radiofrequency thermal lesioning were also treatment options, but they were "more aggressive than I want to be in the beginning, especially if there's a chance for a cure."
Both procedures, he says, intentionally damage the trigeminal nerve. By contrast, once the area where the nerve is compressed is identified during the less-invasive microvascular decompression, the blood vessel is moved away from the nerve and a tiny piece of Teflon felt padding is placed between the blood vessel and nerve.
On average, of the three treatments, microvascular decompression provides the longest pain-free periods and the best chance of remaining off medication.
Regaining his stride
When the pain was at its most crippling, Tom could not eat. He shed 35 pounds from his already lean frame. He also withdrew from his family, including his three young grandsons. Nancy, his wife of 45 years, supported Tom however she could, but she felt helpless more often than not. Tom's life–and, consequently, Nancy's–had been whittled down to bouts of intense pain and the moments of anxious anticipation in between them.
"It was all just so random," he says. "It was a constant surprise attack."
When Tom woke from the anesthesia, his pain was gone. Even more, the entire process couldn't have been smoother.
"I've had several surgeries, some of them pretty significant, and this was the best experience of them all," he says. "Everyone was pleasant and engaging, and there were no issues."
The surgery requires an average hospital stay of two days, but Tom was back home a little more than 24 hours later.
Three months after his procedure, Tom remains pain- and medication-free. And he's as optimistic as he's been in the last three-and-a-half years that he'll stay that way.
He has a little numbness in the area where there was once only blinding pain, and with that, some loss in taste. Dr. Lee says both may resolve naturally over time.
Feeling more like his normal self, Tom is making up for lost time with Nancy, their two daughters, and grandchildren.
Tom recently followed up with his new Penn Medicine neurologist, Seniha Nur Ozudogru, MD, who told him she's here if he needs her. Otherwise, they're planning to meet again in a year to make sure that Tom's still in good shape.
And just a day earlier, Tom ran his first mile in months. After associating his trigeminal neuralgia pain with running, among other things, it was a particularly big step for him. He acknowledges that regaining his stride is more of a mental hurdle than a physical one at this point, but he's confident that he'll get there.
Patience, after all, comes a little easier these days.