His plane was coming in for a landing at Philadelphia International Airport when Allen M Weiss, a marketing professor at the University of Southern California, felt a spasm of pain pierce his left cheek near his nose. "It was really weird," recalled Weiss, then director of Mindful USC, a group of meditation-based programs at the Los Angeles university. "My face froze up."
Within minutes the pain disappeared and the final leg of Weiss's December 2015 trip home to California was uneventful. But over the next few months the sensation recurred in the same spot. At first the unpredictable pain was fairly mild and merely bothersome; later it became an excruciating daily torment.
Several years after the pain first occurred Weiss, who had consulted dentists, oral pain experts and an otolaryngologist, was given a diagnosis that ended up being correct. But his complicated medical history, a radiology report that failed to describe an important finding and a cryptic warning by one of his doctors delayed effective treatment for three more years.
"It was completely confusing," Weiss said. In June 2023 he underwent surgery that has significantly reduced his pain and improved the quality of his life.
N Nicole Moayeri, the Santa Barbara, California, neurosurgeon who operated on Weiss, said a protracted search for a diagnosis and treatment is not unusual for those suffering from Weiss's uncommon malady.
"I commonly see people who've had multiple dental procedures for years" when the problem was not in their mouths, Moayeri said. "It's really shocking to me that so many people suffer" with this for so long.
Deviated septum
After three months of intermittent pain following the flight, Weiss consulted his internist. For reasons that are unclear, the doctor told Weiss the cause was probably psychological, not physical, and that it wasn't serious.
He sent Weiss to an ear, nose and throat specialist whom he saw in March 2016. She performed an exam and ordered a CT scan that revealed a deviated septum, a typically painless condition estimated to affect up to 80 percent of the population in which the bone or cartilage that divides the nostrils is off-center. A moderate or severe deviation can contribute to the development of sinus infections, headaches and breathing problems. But Weiss had none of these. And a deviated septum didn't explain the spasms of pain.
Weiss then consulted his dentist. He found nothing and referred Weiss to a colleague who specializes in treating oral pain. The specialist advised Weiss to open and close his mouth repeatedly while spraying the problem area with cold water.
"The idea was to train my mind not to pay attention to my pain," Weiss said. He was also prescribed nortriptyline, an antidepressant also used to treat facial pain. Neither treatment was effective.
Trigger point injections
A few months later Weiss consulted a second oral pain specialist who recommended trigger point injections, anesthetic shots that are supposed to relieve muscle knots. Weiss said he received these injections every two weeks for the next few years. He also tried acupuncture.
"It's really shocking to me that so many people suffer" with this problem.
The rationale for the injections and acupuncture, both of which seemed to work only briefly, wasn't clear. At the time "I didn't ask questions," said Weiss, now 73. "I was just listening to my doctors - they're some of the best in L.A."
But by late 2019, the cost of biweekly trigger point injections was "getting way out of hand," Weiss said; his health insurance covered only a portion of the fee. He decided to consult a neurologist.
Trigeminal neuralgia
The neurologist who examined him in January 2020 paid particular attention to the spot on his face where the pain was concentrated. He diagnosed trigeminal neuralgia (TN), an uncommon form of nerve pain that affects the trigeminal nerve, a cranial nerve that carries signals from the brain to the face. The intensity of pain from TN varies, but it can be so physically and mentally incapacitating that it's been nicknamed "the suicide disease".
TN, which usually affects only one side of the face, is more common in women and people over 50 and is often mistaken for a dental or jaw problem; an estimated 10,000 to 15,000 cases are diagnosed annually. TN can be caused by a blood vessel pressing on the nerve or by an injury from sinus surgery or dental work. In some cases no cause is found. Sometimes people with multiple sclerosis develop TN because the disease destroys the myelin sheath that protects nerves.
I'm very glad I had the surgery, but I wish at the very beginning I'd gone online and started reading about facial pain.
First-line treatment includes medications. Surgery is reserved for cases where drugs have failed to alleviate pain.
The neurologist ordered a new series of injections and sent Weiss to a second neurologist who performed an electromyography (EMG); the test ruled out neuromuscular disorders including MS. Weiss said the neurologist advised him to "try every pain drug possible before even contemplating any surgery" for TN; Weiss didn't ask why.
Dental agony
In early 2021, Weiss retired and moved north to Santa Barbara.
His pain had intensified to the point that he was unable to meditate - a daily practice he had begun 15 years earlier and that he taught. "It was very upsetting. This was a central part of my life," he said.
During the pandemic Weiss had put off dental care, so he made an appointment to see a dentist in Santa Barbara. The experience proved to be excruciating, requiring multiple shots of Novocain as the dentist replaced a crown. Weiss said he "spent the worst night of my life" vainly attempting to sleep with ice packs on his face to dull the waves of spasming pain.
He had also started seeing a new round of specialists in Santa Barbara. Some wondered if TN was the cause of his pain and suggested the problem might originate instead in his sinuses. Others were leery of additional brain surgery - the potential next step if drugs failed - because of his medical history.
Pituitary adenoma, a benign brain tumor
In 1997 Weiss had undergone an operation to remove a pituitary adenoma, a benign brain tumor that can cause hormone imbalances. A year later he underwent radiation to eradicate possible residual disease. Several doctors seemed reluctant to recommend another operation involving his brain.
In June 2021 a neurologist, the third he had consulted, prescribed a new drug to treat nerve pain. She also ordered scans, including an MRI, to determine whether there were abnormalities of the cranial nerves, particularly the trigeminal nerves. She told Weiss that pain from TN was typically triggered by drinking cold water, eating, talking or toothbrushing, none of which seemed to bother him. Weiss's pain tended to be positional: It worsened considerably when he lay down.
The MRI, performed in July 2021, found no abnormality involving Weiss's trigeminal nerves. A CT scan indicated a possible blockage of his sphenoid sinuses, located at the back of the nose.
In early 2023, Weiss saw a new ENT who told him he wasn't sure what was wrong.
A new approach
No closer to relief after more than seven years, Weiss said he felt hopeless and depressed.
"I decided I had to take control of the situation," he recalled. He scheduled an appointment with another otolaryngologist and obtained the records of his pituitary surgery and follow-up scans. He hoped they might help doctors sort out whether he had a sinus problem or whether the finding on his 2021 CT scan reflected scar tissue from his 1997 operation, as one doctor had suggested.
After another false start - the new ENT spotted a possible dental problem, prompting yet another visit to a dentist who found nothing - Weiss was referred to Moayeri, medical director of neurosurgical oncology at Cottage Health.
At their first meeting in May, the neurosurgeon said she noted the focus on Weiss's previous pituitary surgery and his sinuses, which "led him down the wrong path for a while . . . he's bounced around seeing a lot of doctors."
She returned to the TN diagnosis and told Weiss she needed to review his scans. Moayeri also switched his medication to the seizure drug known to be most effective at treating TN, which alleviated some of his now-daily pain.
"I wish at the very beginning I'd gone online and started reading about facial pain."
When the neurosurgeon inspected the images of his 2021 MRI she was struck by what she saw, which was at variance with the radiologist's conclusion that the trigeminal nerves were "unremarkable." The superior petrosal vein, she said, was compressing Weiss's left trigeminal nerve.
Compressed nerve
"There's so much variability among medical professionals," Moayeri said of the discrepancy.
Moayeri suspected that the compressed nerve was the cause of his TN. A delicate brain operation called a microvascular decompression can relieve pressure on the nerve by lifting it away from the vein or blood vessels compressing or irritating it and protecting the nerve with a tiny Teflon pad.
Moayeri told Weiss that he was a candidate for decompression surgery, but that his atypical presentation of TN diminished the success rate - possibly to as low as 30 percent. And she enumerated the risks, among them stroke, permanent facial numbness, worsening pain and infection.
To her surprise Weiss didn't hesitate: He wanted surgery.
"Nothing else had helped," he said. "I was having pain every day and I thought I'd be in increasing pain for the rest of my life. I thought it was my only option."
Weiss said his pain has diminished considerably
During the June 28 procedure Moayeri discovered that smaller veins draining into the petrosal vein were entwined with the nerve, tethering and scarring it, which made the painstaking surgery more difficult. Because many years had elapsed from the time of his first attack, the neurosurgeon told Weiss that although his severe pain might be reduced, the long delay meant it might not disappear entirely.
Her prediction proved to be correct. Weiss said that his pain has diminished considerably, but he now feels intermittent pressure near his ear. Doctors have told him this may be the result of nerve scarring and might be permanent.
"I'm very glad I had the surgery," he said, "but I wish at the very beginning I'd gone online and started reading about facial pain." Weiss added that he believes he reflexively trusted doctors "too much" and "didn't understand how narrow they were" in their expertise.
He said he especially regrets the years he wasted receiving expensive trigger point injections. "Had I found a doctor years ago who ordered an MRI and sent that to a neurosurgeon," Weiss said, the compressed nerve "might have been caught earlier. And I might have avoided some of the nerve damage and pain."
