For millions of Americans, everyday actions like chewing, talking, or even smiling are shadowed by a relentless and misunderstood pain. Temporomandibular joint disorders — known collectively as TMJ or TMD — affect an estimated 5% to 10% of the U.S. population. While some experience temporary discomfort, others live through a chronic nightmare of surgeries, failed treatments, and lifelong suffering.
Over the past century, dentists and doctors have tried — and often failed — to understand and effectively treat TMJ disorders. Despite the sheer number of patients affected, TMJ remains one of the least understood and poorly researched areas in dental medicine. The result? A system of care that many say causes more harm than healing.
The Human Cost of TMJ
Consider Jenny Feldman of New York City. With more than 24 TMJ-related surgeries under her belt, Feldman compares herself to Mr. Potato Head — a patchwork of grafted ribs, prosthetic placeholders, and metal implants. In her words, “They’re moving ribs into my face, and eyeballs… I feel like a toy.”
Or Lisa Schmidt, a former aerospace scientist who worked alongside NASA astronauts, now living in chronic pain after nearly two decades of unsuccessful TMJ treatments. One of the most harrowing procedures she endured involved tightening screws embedded in her jaw daily, in a failed attempt to restore lost bone. “If I could go back in time and talk to younger Lisa, I would say ‘Run!’” she says.
These aren’t isolated cases. According to an investigation by KFF Health News and CBS News, TMJ patients often find themselves trapped in an escalating series of treatments — from dental splints and orthodontics to invasive surgeries — with little relief and mounting regret.
An Ill-Fated Dental Approach
One of the most confounding aspects of TMJ care is the lack of proven, effective treatment. For decades, dentists have approached TMJ disorders based on the assumption that they stem from a misaligned bite. This has led to a widespread reliance on bite adjustments, braces, and dental splints — all based more on belief than on science.
A comprehensive 2020 report by the National Academies of Sciences, Engineering, and Medicine found that not only is there little evidence supporting these methods, but the treatments themselves often cause more damage. In fact, the NIH has advised against any TMJ treatment that permanently alters the teeth, bite, or jaw.
“It’s a quagmire,” said Dr. Sean Mackey of Stanford, a lead contributor to the national report. “There is a perverse incentive in our society that pays more for things we do to people than [for] talking and listening to people.”
A Women’s Health Issue Ignored
TMJ disorders disproportionately affect women — particularly those in their 20s and 30s — at rates up to nine times higher than men. Some scientists speculate a hormonal connection, but definitive answers remain elusive.
The gender disparity, however, has historically fueled a dangerous dismissiveness. For decades, TMJ — like many female-predominant conditions — wasn’t taken seriously by the medical and dental communities. Many women interviewed for the report described feeling belittled or blamed for their pain, often told they were simply “too stressed” or grinding their teeth.
“That has been a bias that is really long-standing,” said Dr. Rena D’Souza, director of the NIH’s dental research institute. “And it’s certainly affected the progress of research.”
The False Promise of Surgery
When all else fails, some patients resort to the most drastic option: total jaw replacement surgery. Metal hinges are implanted to replace the joints — a last-resort treatment with a haunting track record.
Several TMJ implants were recalled or discontinued in the 1990s due to catastrophic failures. Today, only two companies manufacture total jaw replacement devices in the U.S., and both face scrutiny. The FDA classifies TMJ implants as high-risk, closely monitored devices, acknowledging that failure can result in “adverse health consequences.”
Even the National Institutes of Health warns that these surgeries should be avoided unless absolutely necessary — and even then, success is far from guaranteed. D’Souza, reflecting on her own experience, puts it plainly: “The success rate is low. It is not very encouraging.”
Toward a Better Future
Despite the bleak landscape, there are glimmers of progress. Following the national academies’ 2020 report, the NIH has doubled TMJ research funding to approximately $34 million annually. TMJ has been added to the curriculum standards for dental schools, and a new research collaborative has been launched to better understand the disorder.
But for patients, change can’t come fast enough.
Tricia Kalinowski of Maine, who has endured six joint replacement surgeries and a lifetime of pain, now lives with a non-functioning jaw and permanent nerve damage. She hasn’t felt her husband’s kiss in more than 30 years. “If there was one moment in my life I could take back and do over again,” she said, “it would be that first surgery. Because it set me on a trajectory. And it never goes away.”
Raising Voices, Demanding Action
As the science catches up, one truth remains: the power to change the trajectory of TMJ care lies in awareness and advocacy. Experts and advocates alike urge patients, practitioners, and the public to demand better — more research, more education, and above all, more compassion.
“This has been almost 100 years in dentistry,” said Terrie Cowley, president of the TMJ Association. “And look at what we have — a whole ton of people pretending they know everything. And we don’t know anything.”
If there’s one message TMJ sufferers want the world to hear, it’s this: listen. Believe. And never stop asking for better.
