Professor faces conflict between experts who disagree on the cause of painful cheek spasms
Within minutes, the pain was gone, and Weiss' final leg home to California in December 2015 was uneventful. However, over the next few months, the sensation returned in the same location. At first, the unexpected pain was fairly mild, just an annoyance. After that, it became an excruciating daily pain.
Years after the pain first occurred, Weiss consulted a dentist, an oral pain specialist, and an otolaryngologist, and finally received the correct diagnosis. However, his complicated medical history, a radiology report that did not list important findings, and a cryptic warning by one of his doctors delayed effective treatment for another three years.
“It was complete chaos,” Weiss said. I had surgery in June 2023, which greatly reduced my pain and improved my quality of life.
N. Nicole Moairithe Santa Barbara, Calif., neurosurgeon who performed Weiss' surgery, said the lengthy search for a diagnosis and treatment is not unusual for patients suffering from Weiss' rare disease.
“We often see people having multiple dental procedures over the years,” Moairi said, even though the problem isn't in the mouth. “It's really shocking that so many people are suffering for so long.”
After three months of intermittent pain after the plane ride, Weiss visited an internist. The reason is unknown, but doctors told Weiss that the cause was probably psychological, not physical, and nothing serious.
He sent Weiss to an ear, nose and throat specialist, whom she saw in March 2016. She performed tests and ordered a CT scan, which revealed the following symptoms: deviated septumusually painless It is estimated that up to 80% of A group of bones or cartilages that divide the nostrils that are off center. Moderate or severe deviations can contribute to the development of sinus infections, headaches, and breathing problems. But Weiss was having none of that. And the curvature of the septum did not explain the pain spasms.
Weiss then consulted a dentist. Finding nothing, he referred Weiss to a colleague who specializes in treating oral pain. Experts advised Weiss to repeatedly open and close her mouth while spraying cold water on the problem area.
“The purpose was to train your mind not to pay attention to your 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. trigger point injection, an anesthetic injection intended to relieve muscle stiffness. Weiss said she received these shots every two weeks for the next few years. He also tried acupuncture.
“I'm really shocked that so many people are suffering from this problem.”
— Doctor N. Nicole Moaieri
The rationale for injections and acupuncture was not clear, but both appeared to be only temporarily effective. Weiss, now 73, said at the time: “I didn't ask any questions. I just listened to the doctors. They're some of the best doctors in LA.”
But by the end of 2019, the cost of biweekly trigger point injections “got out of control,” Weiss said. His health insurance only covered part of the fee. He decided to consult a neurologist.
A neurologist who examined him in January 2020 paid particular attention to areas on his face where the pain was concentrated.he diagnosed trigeminal neuralgia (TN) is a rare form of neuralgia that affects the trigeminal nerve, the cranial nerve that carries signals from the brain to the face. The pain caused by TN can vary in intensity, but it can be physically and mentally incapacitating, hence its nickname.It's a suicide disease. ”
TN usually affects only one side of the face, is more common in women and people over 50, and is often mistaken for a tooth or jaw problem.Estimation 10,000-15,000 items Diagnosed every year. TN can be caused by a blood vessel compressing a nerve or damage from sinus surgery or dental treatment. In some cases, the cause may not be found. People with multiple sclerosis may develop TN because the disease destroys the myelin sheath that protects the nerves.
First-line treatment includes drug therapy. Surgery is only done if drugs fail to relieve pain.
The neurologist ordered a new series of injections and sent Weiss to another neurologist who performed electromyography (EMG). This test ruled out neuromuscular disorders, including MS. Weiss said a neurologist advised TN to “try every pain medication available before considering surgery.” Weiss didn't ask why.
In early 2021, Weiss retired and moved north to Santa Barbara.
His pain became so intense that he was unable to meditate. Meditation was a daily habit he started 15 years ago and taught by him. “I was very upset. This was a central part of my life,” he said.
Weiss had put off dental work during the pandemic, so she made an appointment to go to a dentist in Santa Barbara. The experience proved excruciating and required multiple injections of Novocaine as a dentist. I replaced the crown. Weiss said she tried to sleep by putting an ice pack on his face to ease the convulsive waves of pain, but to no avail and “had the worst night of her life.”
He also started seeing a new specialist in Santa Barbara. Some wondered if the TN was causing his pain and suggested the problem might be in the sinuses. Because of his medical history, some were concerned about additional brain surgery, which could be the next step if drugs don't work.
In 1997, Weiss underwent surgery to remove a brain tumor. pituitary adenoma, a benign brain tumor that can cause hormonal imbalances. A year later, he underwent radiation therapy to eradicate any possible residual disease. Some doctors seemed reluctant to recommend another surgery on his brain.
In June 2021, the third neurologist he saw prescribed a new drug to treat nerve pain. She also ordered scans, including an MRI, to determine if there were any physical abnormalities. cranial nerve, especially the trigeminal nerve. She told Weiss that the pain from TN is usually triggered by drinking cold water, eating, talking and brushing his teeth, but none of these seemed to bother him, she said. Ta. Weiss' pain tended to be related to position, and was significantly worse when lying down.
An MRI performed in July 2021 found no abnormalities related to Weiss's trigeminal nerve. A CT scan showed he may have a blockage in his brain. sphenoid sinus, It's located inside your nose.
In early 2023, Weiss went to see a new ENT doctor who said they didn't know what was wrong.
More than seven years later, Weiss said she felt hopeless and depressed, far from relieved.
“I decided I had to take control of the situation,” he recalls. He made an appointment with another otolaryngologist and obtained records of his pituitary surgery and follow-up scans. It will help doctors determine whether he had sinus problems, as one doctor suggested, or whether the findings on the 2021 CT scan reflect scar tissue from the 1997 surgery. That's what he wanted.
After another false start when a new ENT discovered a possible dental problem and another visit to the dentist found nothing, Mr. Weiss decided to go to Cottage Health's neurology clinic. I was introduced to Dr. Moairi, the medical director of the surgical oncology department.
in At their first meeting in May, the neurosurgeon focused on Weiss' past pituitary and sinus surgeries, which “led him down the wrong path for a while…he had to see a lot of doctors.” I've moved around a lot,” he said.
She returned to the TN diagnosis and told Weiss that the scans needed to be reconsidered. Moairi also switched her medication to a seizure medication known to be most effective in treating TN, which provided some relief from her daily pain.
“I wish I had started reading about facial pain on the internet from the beginning.”
— Allen M. Weiss
When a neurosurgeon examined the 2021 MRI images, she was shocked by what she saw. That contradicted the radiologist's conclusion that there was “no significant abnormality” in the trigeminal nerve.of superior petrosal veinwhich was compressing Weiss' left trigeminal nerve, she said.
“There's a huge amount of variation among medical professionals,” Moairi said of the discrepancy.
Moairi suspected that a compressed nerve was the cause of the TN.A delicate brain operation called Microvascular decompression It lifts the nerve from the vein or blood vessel to apply pressure and stimulation, and protects the nerve with a small Teflon pad to relieve pressure on the nerve.
Moairi told Weiss that he was a candidate for decompressive surgery, but his atypical TN symptoms reduced the success rate, perhaps as low as 30 percent. She then listed the risks, including stroke, permanent facial numbness, worsening pain and infection.
Surprisingly, Weiss didn't hesitate. He requested surgery.
“Nothing else helped,” he said. “I was in pain every day and thought I would be in more pain for the rest of my life. I thought that was my only option.”
During surgery on June 28, Moaieri noticed that a small vein that drains into the petrosal vein had wrapped around the nerve, tethering it and leaving a scar, making the arduous surgery more difficult. . Since it had been many years since the first attack, the neurosurgeon told Weiss that the severe pain might lessen, but might not go away completely over time.
Her prediction turned out to be correct. Weiss said her pain has subsided considerably, but she now feels intermittent pressure near her ear. Doctors told her this could be the result of nerve scarring and could be permanent.
“I'm so glad I had the surgery, but I wish I had started searching online and reading about facial pain from the beginning,” he said. Weiss added that he thought he reflexively trusted doctors “too much” and “didn't realize how narrow” their expertise was.
He said he particularly regrets the years he wasted receiving expensive trigger point injections. If he had found a doctor years ago to order an MRI and send it to a neurosurgeon, the compressed nerve “could have been caught sooner,” Weiss said. And he may have avoided some of the nerve damage and pain. ”
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