While many people think braces are normally the solution to most dental woes, for Lillian Roman, they were just the start of a painful, years-long ordeal.
After having braces as a teen, Lillian, a 21-year-old college student who hopes to become a Spanish professor, was left with a "perfect bite," meaning all of her teeth touched. In the years to come, she began experiencing pain and separation of her upper and lower jaw.
She was eventually diagnosed with idiopathic condylar resorption (ICR) of the temporomandibular joints (TMJs), which is a progressive degenerative joint disease in which the joints of the mandible bone — the bone that holds your bottom teeth in place — are progressively broken down and absorbed by the body.
Some of the most frequent symptoms include pain and difficulty speaking, eating, and breathing due to the narrowing of airways caused by the degeneration.
ICR most frequently affects females between the ages of 10 and 40, with the diagnosis commonly occurring from puberty to early 20s.
Lillian told BuzzFeed that she was scrolling through TikTok when she found another girl who had been diagnosed with ICR. She had been documenting her experience with total joint replacement surgery in her videos, inspiring Lillian to reach out and learn more.
After commenting that she also had ICR but was planning on trying double jaw surgery before joint replacement, Lillian was directed to a Facebook group full of others with ICR who told her that more often than not, the double jaw surgery failed.
"I realized that I knew my body better than anybody and needed to trust it, even if my gut feeling went against the doctors’ recommendations," Lillian told BuzzFeed. "I knew that if my joints couldn’t even handle braces, there would be no way that they would handle a surgery in which they reconstruct my upper and lower jaw and neglect the underlying issue, which is the diseased bone."
Lillian is now preparing to undergo her total joint replacement surgery in January. The surgery will involve removing the diseased jaw bone, replacing it with custom-made bilateral titanium joint replacements, and cutting into her jaw to fix asymmetry and rotation.
"My surgeon's ultimate goal in terms of aesthetics is to restore my face to what it would’ve looked like if ICR hadn’t robbed me of my natural features," she said. "This is exactly what I want because ultimately I don’t want to come out of surgery looking like a different person, I just want to look like me again."
She said she was inspired to make her own TikToks about her story because she hopes they can help someone the way TikToks helped her.
Leading up to the surgery, the pain from the deterioration became so intense that Lillian made the tough decision to take incompletes in her college courses for this semester, and she has chosen to defer her next semester so she can give her all to the recovery process.
"It has gotten so difficult to keep up with basic life tasks like feeding myself and cleaning up around the house," Lillian said. "The college lifestyle that I was able to manage just two years ago is now unfeasible due to my level of fatigue."
In addition to dealing with physical challenges stemming from ICR, Lillian also noted the ways her diagnosis has affected her mental health.
"I’m always so thankful for the comments I get on my TikToks saying that I’m still beautiful despite the changes in my jaw, but they don’t understand how heartbreaking it is to look at yourself in the mirror and not recognize yourself," she said.
