A Patient's Research on His Rare Syndrome Leads Surgeons to a Cure

Dennis Modia describes himself as studious, confident, ambitious and above all, persistent. As an aspiring physician assistant (PA) finishing his prerequisite courses, these traits serve him well.

However, for three agonizing years, Mr. Modia, 25, had to apply his persistence to a much more personal challenge: seeking a cure for a debilitating and extremely rare condition that was disrupting his ability to eat, sleep and speak.

His journey involves several misdiagnoses, extensive personal research leveraging the power of artificial intelligence (AI) and, ultimately, a partnership with a pair of surgeons at Baptist Health Miami Cancer Institute who were willing to listen to their patient and accommodate his quest for a cure.

A Life Interrupted by Pain and Noise

At age 22, Mr. Modia began experiencing some confounding symptoms. He developed a visible and palpable clicking in his neck whenever he turned his head. “It was mostly when turning my head to the right but sometimes also when I turned it to the left,” he says. The clicking was not just a sensation; he could actually hear and see the movement of bone against cartilage in his neck.

Along with the clicking came severe physical symptoms. Mr. Modia experienced dysphagia (difficulty swallowing) and sharp nerve pain that radiated from his neck to his face. Coupled with the constant clicking, the pain made working and studying nearly impossible. Drinking alcohol only aggravated his condition so going out for drinks with friends was out of the question.

The impact on his daily life was devastating. His social life vanished because he felt so self-conscious about his condition. “It was terrible…it was hell,” Mr. Modia admits. “I had been dealing with this condition for more than three years and was misdiagnosed several times. First, it was trigeminal neuralgia, then migraine, then TMJ disorder.”

Despite undergoing surgery for his supposed TMJ disorder, Mr. Modia’s symptoms persisted. He knew immediately upon waking from that procedure that it had not been successful. The clicking remained—and so did his determination to find an answer.

The Patient as Researcher

During the years he suffered, Mr. Modia devoted countless hours studying his condition. Out of desperation, he started using the latest AI tools to analyze medical data and generate various treatment scenarios. Through his rigorous investigation, he discovered a 20-year-old medical paper describing a thyroid cartilage reduction procedure employed in a small group of patients whose symptoms matched his own.

Mr. Modia’s research identified his condition as Clicking Larynx Syndrome, also known as Clicking Hyoid Syndrome. Armed with case reports and data, he sought help from William Brown, M.D., an otolaryngologist with Baptist Health. Dr. Brown gave him an injection of epinephrine and bupivacaine in his neck, by his thyroid cartilage. If it helped relieve Mr. Modia’s symptoms it would confirm that he did indeed have Clicking Larynx Syndrome.

The injection provided almost instant relief, according to Mr. Modia. With his diagnosis confirmed, Dr. Brown referred him to Meghan Crawley, M.D., a head and neck surgical oncologist at Baptist Health Miami Cancer Institute.

In late 2024, Dr. Crawley performed a procedure called a total hyoid excision, which entails removing the entire hyoid bone — a small, U-shaped bone in the upper neck. The hyoid bone is unique because it doesn’t attach to any other bone; instead, it’s suspended by muscles and ligaments.

Mr. Modia thought the surgery was a success at first because his facial nerve pain had improved. However, he soon realized that it hadn’t relieved his Clicking Larynx Syndrome. His neck was still clicking with every turn. Confident that the surgery would fix his problem, he was frustrated and disappointed his outcome wasn’t what he had hoped for.

Geoffrey Young, M.D., Ph.D., chief of Head and Neck Surgery at Miami Cancer Institute, reviewed the research Mr. Modia had shared with Dr. Crawley. He recalls the unique nature of Mr. Modia’s case.

“He was very knowledgeable and very persistent. He was also very frustrated and anxious for a solution.” Rather than dismissing the patient’s self-directed research, Dr. Young reviewed the information Mr. Modia provided and conducted his own investigation, doing a deep dive into Clicking Larynx Syndrome.

Over the next few weeks, Dr. Young contacted the authors of the original paper to discuss their findings and the surgical approach they used. He also surveyed a dozen or so of the otolaryngologists he knows in Miami and around the country to get their opinions on the surgery’s efficacy.

What is Clicking Larynx Syndrome?

Clicking Larynx Syndrome is an exceptionally rare disorder characterized by the displacement of the superior cornu (horn) of the thyroid cartilage or the hyoid bone. When a patient turns their head or swallows, these structures can rub against the cervical spine vertebrae, creating a loud clicking or popping sound and causing significant pain.

The condition is so uncommon that few head and neck surgeons ever encounter it. “It’s extremely rare,” Dr. Young explains. “Prior to seeing Mr. Modia, I had never heard of it and neither had Dr. Crawley.”

Literature on the subject is scarce; the paper Mr. Modia discovered documented fewer than a dozen cases in the U.S. And as Dr. Young learned, because Clicking Larynx Syndrome is so rare, patients often face misdiagnosis or are told the problem is psychosomatic.

A Collaborative Surgical Solution

After Mr. Modia’s initial surgery to remove the hyoid bone failed to resolve the clicking, Drs. Crawley and Young decided to proceed with the thyroid cartilage reduction procedure Mr. Modia had identified in his research. Neither of them had performed this particular surgery but their patient was undeterred.

Emphasizing that successful outcomes rely on clear communication between doctor and patient, Dr. Crawley and Dr. Young approached the surgery with caution and transparency. “If you have an educated patient and a medical team who understands the needs of the patient, you’re going to have better outcomes,” Dr. Young says.

Thyroid cartilage reduction involves making an incision in the neck to locate the portion of the thyroid cartilage’s hornu that is contacting the spine. “We just shave off a portion of the thyroid cartilage where it is contacting the vertebrae,” Dr. Young says. “The goal is to eliminate the friction causing the clicking and pain while avoiding injury to nearby nerves that control the voice box and tongue.”

Immediate Relief and Recovery

The results of Mr. Modia’s second surgery were instantaneous. Finally, he could turn his head with no annoying clicking. “I knew immediately it was a success,” he says, expressing his deep appreciation for his surgeons’ efforts to cure his rare condition. “Dr. Crawley and Dr. Young went above and beyond the call of duty and fixed what couldn’t be fixed.”

Dr. Young says he was pleased with the surgery’s success because the condition had had such a profound impact on Mr. Modia’s quality of life. “I was extremely relieved for him because this had been so disabling for him for several years.”

Recovery progressed quickly. Mr. Modia spent a day in the hospital and found the post-surgical pain manageable. Most importantly, the symptoms that had plagued him for more than three years had resolved completely. He returned to his work, his studies and his normal routine, free from the condition that had left him in pain, frustration and

Looking Forward

His experience dealing with Clicking Larynx Syndrome—and using his AI-powered research skills to find a cure—solidified Mr. Modia’s career path. He is currently applying to PA programs in Miami and hopes to one day work with Baptist Health.

“I want to be the PA patients remember because I took the time to really listen to them and answer all of their questions,” he says, mirroring the care he received from Dr. Crawley and Dr. Young at Miami Cancer Institute.

For Dr. Young, the case highlights the value of listening to patients and embracing collaboration and innovation. “Seeing him in follow-up and hearing how he was able to get back to a normal life—all of those things were very impactful,” he says.

By combining Mr. Modia’s perseverance with their clinical expertise and willingness to listen and learn, Drs. Crawley and Young were able to successfully treat a condition they and many others had never seen before and restore Mr. Modia’s quality of life.