Facial pain and many possible causes

When Weiss first felt the spasm of pain on his face, he was on a flight and felt pain on his left cheek near his nose. "It was really weird," he said. "My face froze up." However, minutes later, the pain disappeared.

But over the course of the next few months, Weiss felt pain return in the same spot, and the pain gradually became excruciating and appeared every day.

Three months later, Weiss went to his internist, who told him his pain was likely psychological and wasn't serious. The internist referred Weiss to an ear, nose, and throat (ENT) specialist who performed an exam and ordered a CT, which found a deviated septum.

A deviated septum occurs when the bone or cartilage dividing the nostrils is off-center, and it's typically a painless condition. Moderate or severe deviations can contribute to sinus infections, headaches, and breathing problems, but Weiss experienced none of these symptoms.

Weiss then spoke to his dentist, who found nothing and referred Weiss to a colleague who specializes in oral pain. That specialist recommended that Weiss open and close his mouth repeatedly while spraying the painful area with cold water.

"The idea was to train my mind not to pay attention to my pain," Weiss said. He was also prescribed the antidepressant nortriptyline, which is also sometimes used to treat facial pain. Neither of these treatments were effective.

A few months later, Weiss went to another oral pain specialist who recommended he receive trigger point injections, which are anesthetic shots that are supposed to relieve muscle knots. Weiss received these injections every two weeks for the next few years and also tried acupuncture.

However, by late 2019, the cost of the injections was "getting way out of hand," Weiss said. He visited a neurologist in January 2020 who diagnosed Weiss with trigeminal neuralgia (TN), an uncommon form of nerve pain affecting the trigeminal nerve, a cranial nerve that carries signals from the brain to the face. The pain from TN varies but can be so physically and mentally intense that it's nicknamed "the suicide disease," Boodman reports.

Sometimes TN is caused by a blood vessel pressing on the nerve, by some other injury, sinus surgery, or dental work. However, in some cases, no cause is found, Boodman reports.

Weiss' neurologist ordered a new series of injections and referred Weiss to a second neurologist who performed an electromyography, which ruled out neuromuscular disorders like MS. According to Weiss, the neurologist recommended he "try every pain drug possible before even contemplating any surgery" for TN.

The pain intensifies

In early 2021, Weiss retired and moved to Santa Barbara and made an appointment to see a dentist. During the visit, Weiss had a crown replaced and experienced excruciating pain, requiring multiple shots of Novocain. He then "spent the worst night of [his] life" trying to sleep with ice packs on his face to dull the waves of pain.

Weiss also started seeing new specialists in Santa Barbara. Some wondered if TN was causing his pain and said the problem could be originating in his sinuses instead. Other specialists were concerned about potentially performing brain surgery, as Weiss had previously undergone brain surgery in 1997 to remove a pituitary adenoma, a benign brain tumor that can cause imbalances of hormones.

In June 2021, Weiss saw another neurologist who prescribed a new drug to treat his pain and ordered scans, including an MRI, to determine whether Weiss had any abnormalities in his cranial nerves, especially the trigeminal nerves. She informed Weiss that TN was typically triggered by drinking cold water, eating, talking, or toothbrushing, but none of those things bothered Weiss. Instead, his pain seemed to be triggered by his body position and got worse when he laid down.

The MRI found no abnormalities in Weiss' trigeminal nerves, and a CT scan found a potential blockage of his sphenoid sinuses, which are located at the back of the nose. In early 2023, Weiss saw a new ENT who told him he was unsure what was wrong.

Finally, a diagnosis

After seven years of pain and no solutions, Weiss said he felt hopeless and depressed.

"I decided I had to take control of the situation," he said. He scheduled an appointment with another otolaryngologist and acquired the records of his pituitary surgery as well as follow-up scans.

Eventually, Weiss was referred to N. Nicole Moayeri, medical director of neurosurgical oncology at Cottage Health. After their first meeting, Moayeri said she noted the focus on Weiss' previous surgery and his sinuses, which "led him down the wrong path for a while … he's bounced around seeing a lot of doctors."

She reviewed Weiss' scans and switched out his medication for a seizure drug known to be effective at treating TN, which helped alleviate some of his pain.

After examining the images from Weiss' 2021 MRI, Moayeri said she was surprised at what she saw, given the radiologist's conclusion the trigeminal nerves were "unremarkable" — Weiss' superior petrosal vein was compressing his left trigeminal nerve.

Moayeri suspected the compressed nerve could be causing Weiss' TN, and told Weiss he was a candidate for microvascular decompression surgery, which can relieve pressure on the nerve by lifting it away from the vein or blood vessels and protecting the nerve with a small Teflon pad.

However, Moayeri informed Weiss that given his atypical presentation of TN, his success rate was potentially as low as 30%, and the risks that come with the procedure include stroke, permanent facial numbness, worsening pain, and infection. Despite that, Weiss said he wanted the 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."

During the procedure, Moayeri found that smaller veins draining into the petrosal vein were intertwined with Weiss' nerve, which tethered and scarred it and made the surgery more difficult. Since multiple years had passed since his first attack, Moayeri told Weiss his pain may be reduced, but it might not disappear entirely.

According to Weiss, that has been the case. His pain has diminished significantly, but he now feels an intermittent pressure near his ear, which doctors have said could be the result of nerve scarring and may be permanent.

"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," Weiss said. He added that believes he reflexively trusted doctors "too much" and "didn't understand how narrow they were" in their expertise.

Weiss said he especially regrets the years of receiving trigger point injections. "Had I found a doctor years ago who ordered an MRI and sent that to a neurosurgeon," the compressed nerve "might have been caught earlier," Weiss said. "And I might have avoided some of the nerve damage and pain." (Boodman, Washington Post, 12/16/23)

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