The Stuntman’s Transformation: A Decade-Long Quest to Uncover a Life-Altering Diagnosis

Ray Kohn’s life was always full-throttle, both as a stunt driver and a mechanic. Known for his high-octane stunts and fearless nature, he thrived on adrenaline and precision. But in 2015, Kohn began noticing subtle changes that he attributed to the wear and tear of his demanding career: persistent pain in his knees and elbows.

What he thought were occupational hazards turned into something far more profound. Over the next several years, Kohn’s body began to transform in ways that defied explanation. His head grew larger, forcing him to buy bigger helmets. His hands expanded so significantly that his wedding ring had to be resized three times. His voice deepened, his teeth shifted, and an underbite developed. Despite leading an active lifestyle, he inexplicably gained over 100 pounds and battled an insatiable hunger.

"I was falling apart, and I didn't know why," Kohn, now 47, recalls. The pain in his joints became unbearable, forcing him to undergo three knee surgeries and an elbow operation—all with little relief. Frustrated and desperate for answers, Kohn found himself at a standstill. His body seemed to be betraying him, and no doctor could tell him why.

A Dermatologist’s Remark Sparks a Breakthrough

By 2022, Kohn’s physical transformations had become undeniable. Watching videos of his past stunt work revealed stark differences, prompting a haunting realization: "I’m not growing old. I’m actually transforming."

Later that year, Kohn visited a dermatologist for lines forming on his head. This routine appointment would change his life. The dermatologist’s keen eye picked up on the size of his hands, the contours of his tongue, and his facial structure. She ordered blood tests, which revealed abnormally high hormone levels and sent him to Cleveland Clinic endocrinologist Dr. Divya Yogi-Morren.

The moment Dr. Yogi-Morren saw Kohn, she had a hunch. "I took one look at him and already knew what he had," she said. She called in her colleague, neuroendocrinologist Dr. Varun R. Kshettry, to confirm her suspicion. Their diagnosis: acromegaly, a rare hormonal disorder caused by a tumor on the pituitary gland that triggers excessive growth hormone production.

The Rare and Devastating Impact of Acromegaly

Acromegaly manifests in the body’s soft tissues and bones, leading to enlarged hands, feet, and facial features. Internally, it causes fluid retention, pre-diabetes, cardiovascular issues, and respiratory complications such as sleep apnea. Wrestler Andre the Giant famously suffered from the condition, which contributed to his untimely death at 46.

Kohn’s MRI revealed a nine-millimeter tumor on his pituitary gland. Without treatment, doctors warned, the condition could prove fatal. "They said, 'If you don't get this out of your brain, you're going to die,'" Kohn remembers. Yet even in the face of such dire news, his first question was: "Can I still do stunt jumps after this surgery?"

The Life-Saving Surgery and Path to Recovery

In June 2023, Kohn underwent an eight-hour brain surgery to remove the tumor. Despite his history of facing danger head-on, the idea of brain surgery terrified him. "I’ve stared death in the face multiple times, but this felt different," he admits.

The surgery was a success. Almost immediately, Kohn’s hormone levels stabilized, halting the body-wide effects of acromegaly. However, the damage caused by years of undiagnosed growth hormone overproduction wasn’t entirely reversible.

Post-surgery, Kohn’s recovery was grueling but transformative. Over the course of a year, he lost over 100 pounds and began planning corrective surgeries for his knees and jaw. These procedures will address the permanent structural changes left by the disease. Despite the challenges, Kohn feels immense gratitude for the second chance he’s been given.

"I felt reborn," he says, reflecting on his return to stunt driving—a passion he thought he might lose forever. "Getting back in the car was very special. I had something taken away from me, but now I’ve got it back."

A Decade of Delays and the Importance of Early Diagnosis

Kohn’s journey underscores a harsh reality: acromegaly often goes undiagnosed for years. Experts like Dr. Yogi-Morren estimate a diagnostic delay of six to ten years, largely because the symptoms develop gradually and can mimic other conditions. "From the medical side, acromegaly is one of those diagnoses where it takes a village," says Dr. Kshettry. Effective treatment requires collaboration across multiple specialties, including endocrinology, neurosurgery, dermatology, and cardiology.

While surgical removal of the tumor stops the overproduction of growth hormones in most cases, long-term follow-ups are essential to monitor for recurrence. For patients like Kohn, the road to recovery also involves addressing irreversible changes through additional surgeries and therapies.

A Life Transformed, A Future Reclaimed

Today, Kohn is focused on regaining his strength and savoring the everyday moments he once took for granted. He has even reached out to thank the dermatologist whose quick thinking helped save his life.

Reflecting on his journey, Kohn remains optimistic and determined. "You can’t let fear stop you," he says. "Life is about taking risks, and sometimes the biggest risks bring the greatest rewards."

For Kohn, the greatest reward is simple: the chance to keep living—and stunting—on his own terms.