He lived with burning facial pain for more than seven years

By | December 18, 2023

His plane was about to land at Philadelphia International Airport when Allen M. Weiss, a marketing professor at the University of Southern California, felt a stab of pain through his left cheek, near his nose. “It was really weird,” recalls Weiss, then director of Mindful USC, a group of meditation-based programs at the University of Los Angeles. “My face froze.”

Within minutes, the pain subsided and the last leg of Weiss’ trip home to California in December 2015 was uneventful. But over the next few months the feeling returned in the same place. At first the unpredictable pain was fairly mild and merely a nuisance; later it became an unbearable daily torment.

Subscribe to The Post Most newsletter for the most important and interesting stories from The Washington Post.

Several years after the pain first appeared, Weiss, who consulted dentists, oral pain experts and an otolaryngologist, received a diagnosis that ultimately turned out to be correct. But his complicated medical history, a radiology report that left out a key finding, and a cryptic warning from one of his doctors delayed effective treatment by another three years.

“It was completely confusing,” Weiss said. In June 2023, he underwent surgery that significantly reduced his pain and improved his quality of life.

N. Nicole Moayeri, the Santa Barbara, California, neurosurgeon who operated on Weiss, said a lengthy search for a diagnosis and treatment is not unusual for people suffering from the rare Weiss disease.

“I often see people who have had multiple dental procedures over the years” when the problem wasn’t in their mouth, Moayeri said. “It’s really shocking to me that so many people are suffering from this for so long.”

– – –

Deviated septum

After three months of intermittent pain after the flight, Weiss consulted his internist. For reasons unclear, the doctor told Weiss that the cause was likely psychological, not physical, and that the cause was not serious.

He sent Weiss to an ear, nose and throat specialist who he saw in March 2016. She performed an examination and ordered a CT scan which revealed a deviated septum, a usually painless condition estimated to affect up to 80 percent of the population in which the bone or cartilage that separates the nostrils is not located in the middle. A moderate or severe deviation can contribute to the development of sinus infections, headaches and breathing problems. But Weiss wasn’t having any of this. And a deviated septum did not explain the pain spasms.

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.

A few months later, Weiss consulted a second oral pain specialist who recommended trigger point injections, anesthetic injections that should 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 are affected” by this problem.

The reason for the injections and acupuncture, both of which seemed to work only for a short time, was not clear. At the time, “I didn’t ask any questions,” said Weiss, now 73. “I just listened to my doctors — they’re some of the best in L.A.”

But by late 2019, the cost of biweekly trigger point injections was “spiraling out of control,” Weiss said; his health insurance only covered part of the compensation. He decided to consult a neurologist.

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 unusual 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 in TN varies, but it can be so physically and mentally disabling that it is 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 confused with a tooth 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 the nerves.

First-line treatment includes medications. Surgery is reserved for cases where medications have failed to relieve pain.

The neurologist ordered another 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 medication possible before even considering surgery” for TN; Weiss didn’t ask why.

– – –

Toothache

In early 2021, Weiss retired and moved north to Santa Barbara.

His pain had become so severe that he was no longer able to meditate – a daily practice he had begun and taught fifteen years earlier. “It was very disturbing. This was a central part of my life,” he said.

During the pandemic, Weiss had put off dental care, so he made an appointment with a dentist in Santa Barbara. The experience proved to be excruciating, requiring multiple injections of Novocain while the dentist replaced a crown. Weiss said he “spent the worst night of my life” trying unsuccessfully to sleep with ice packs on his face to numb the waves of cramping pain.

He had also visited a new round of specialists in Santa Barbara. Some wondered if TN was the cause of his pain and suggested the problem might originate in his sinuses. Others were leery of additional brain surgery — the possible next step if medications failed — because of his medical history.

In 1997, Weiss had surgery to remove a pituitary adenoma, a benign brain tumor that can cause hormonal imbalances. A year later, he underwent radiation to eradicate any residual disease. Several doctors seemed reluctant to recommend further surgery on 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 if there were any abnormalities in the cranial nerves, especially the trigeminal nerves. She told Weiss that TN’s pain was usually caused by drinking cold water, eating, talking, or brushing his teeth, and that it didn’t seem to bother him. Weiss’s pain was mostly positional: the pain became significantly worse when he lay down.

The MRI, performed in July 2021, found no abnormalities involving Weiss’ trigeminal nerves. A CT scan indicated a possible blockage of his wedge-shaped sinuses, located at the back of the nose.

In early 2023, Weiss saw a new ENT doctor who told him he wasn’t sure what was going on.

– – –

A new approach

After more than seven years, Weiss was no closer to enlightenment, but he felt hopeless and depressed.

“I decided I had to take control of the situation,” he recalls. He made an appointment with another ENT doctor and obtained the data from his pituitary surgery and follow-up scans. He hoped they could help doctors figure out whether he had a sinus problem or whether the finding on his 2021 CT scan reflected scar tissue from his 1997 surgery, as one doctor had suggested.

After another false start — the new ENT doctor discovered a possible dental problem, prompting another visit to a dentist who found nothing — Weiss was referred to Moayeri, medical director of neurosurgical oncology at Cottage Health.

During their first meeting in May, the neurosurgeon said she noticed the emphasis on Weiss’ previous pituitary surgery and his sinuses, which “led him down the wrong path for a while…he’s been to a lot of doctors.”

She returned to the TN diagnosis and told Weiss she needed to look at his scans. Moayeri also switched his medication to the anti-seizure drug known to be most effective in treating TN, relieving some of his now daily pain.

“I wish I had gone online and read about facial pain from the very beginning.”

When the neurosurgeon reviewed images from his 2021 MRI, she was struck by what she saw, which contradicted the radiologist’s conclusion that the trigeminal nerves were “unremarkable.” The superior petrosal vein, she said, was compressing Weiss’ left trigeminal nerve.

“There is so much variation among medical professionals,” Moayeri said of the discrepancy.

Moayeri suspected that the pinched nerve was the cause of his TN. A delicate brain operation called 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 small Teflon pad.

Moayeri told Weiss that he was a candidate for decompression surgery, but that his atypical presentation of TN reduced the success rate – possibly by as much as 30 percent. And she listed the risks, including stroke, permanent facial numbness, worsening pain and infection.

To her surprise, Weiss didn’t hesitate: he wanted surgery.

“Nothing else would have helped,” he said. “I was in pain every day and I thought I would be in more and more pain for the rest of my life. I thought this was my only option.”

During the June 28 procedure, Moayeri discovered that smaller veins draining into the petrosal vein were entangled with the nerve, causing it to become trapped and scarred, making the laborious surgery more difficult. Because many years had passed from the time of his first attack, the neurosurgeon told Weiss that his severe pain might subside, but the long delay might not disappear completely.

Her prediction turned out to be correct. Weiss said his pain has decreased significantly, but he now feels intermittent pressure near his ear. Doctors have told him this could be the result of nerve scarring and may be permanent.

“I’m very glad I had the surgery,” he said, “but I wish I had gone online and read about facial pain from the very beginning.” Weiss added that he believes he reflexively trusted doctors “too much” and “didn’t understand how limited they were” in their expertise.

He said his biggest regret is the years he wasted receiving expensive trigger point injections. “If I had found a doctor years ago who would have done an MRI and sent it to a neurosurgeon,” Weiss said, the compressed nerve might have been caught sooner. And maybe I could have avoided some of the nerve damage and pain.”

related content

James Biden’s dealmaking was captured on FBI tapes in an unrelated bribery investigation

A former White House scientist was defrauded of $655,000. Then the tax authorities came.

A fight for black representation, with a civil rights milestone at stake

Leave a Reply

Your email address will not be published. Required fields are marked *