The NIH Hopes To Make TMJ ‘Bearable.’ It Has a Lengthy Approach To Go.

The National Institutes of Health is spending more money than ever to solve the mysteries of TMJ disorders — little-understood ailments that afflict as many as 33 million Americans.

Temporomandibular joint disorders, known as TMJ or TMD, cause pain in the jaw and face that can range from discomfort to disabling, with severe symptoms far more common in women. Despite its prevalence, TMJ remains under-researched and ineffectively treated, an investigation by KFF Health News and CBS News found.

The NIH recently doubled annual funding for TMJ research, to $34 million, and in 2023 funded a new collaborative to better understand and treat the disorders.

Rena D’Souza, director of the National Institute of Dental and Craniofacial Research, said she’s “hopeful” the lives of future TMJ patients will be made “bearable.” But the millions of Americans suffering from the disorder must tread carefully when seeking care, she warned.

“I would say that the treatments overall have not been effective, and I can understand why,” D’Souza said. “We don’t understand the disease.”

The increased NIH funding is a direct response to a comprehensive 2020 study of TMJ by the National Academies of Sciences, Engineering and Medicine.

The study found that most health-care professionals, including dentists, have received “minimal or no training” on TMJ disorders and common treatments are not backed by compelling scientific evidence or consistent results. Because of the lack of proven treatments, TMJ patients are “often harmed” by “overly aggressive” care, the national academies found.

The NIH echoes these findings on its website, warning that some common treatments “don’t work” and that TMJ patients should stay away from any treatment that permanently changes their teeth, bite or jaw — including surgery.

Some TMJ patients have the same advice, learned the hard way.

“The grand irony to me is that I went to the doctor for headaches and neck pain, and I’ve had 13 surgeries on my face and jaw, and I still have even worse neck pain,” said Tricia Kalinowski, 63, of Old Orchard Beach, Maine. “And I live with headaches and jaw pain every day.”

One reason treatment options for TMJ aren’t better, multiple experts said, is because the disorders predominantly affect women. Their complaints were historically dismissed as neither serious nor complex, and therefore TMJ was not a priority for research.

“That has been a bias that is really long-standing,” D’Souza said. “And it’s certainly affected the progress of research.”

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