A stuntman knew his body was changing. It took doctors nearly a decade to figure out why.

When Ray Kohn started feeling pain in his knees and elbows in 2015, he attributed it to his work as a stunt driver and mechanic.

But as the years went on, he began to notice his body changing in unusual ways: His head grew so much that he needed a larger helmet, and his hands became so big he had to have his wedding ring resized three times. His voice changed. His teeth shifted in his mouth, creating an underbite. He gained over 100 pounds despite his extremely active lifestyle, and he was constantly hungry no matter what he ate. 

Meanwhile, the pain in his knees and elbows continued. Cortisone shots, meant to reduce inflammation and pain, never lasted long. In 2019, he had the first of three knee surgeries. Later, he’d have operations on his elbow. Nothing worked. No doctor he saw had an answer — even as knee pain forced him to cling to the wall to walk. 

“I was falling apart, and I didn’t know why,” Kohn, now 47, said.

Looking at videos from past stunt work showed the extent of the changes.

“I was like ‘Look how much I changed. I’m not growing old. I’m actually transforming.’ Why is this happening?” 

In the fall of 2022, Kohn went to a dermatologist after noticing lines form on his head. The doctor asked to see his hands and commented on their size. Then, she looked at his tongue, eyebrows and other facial features, and sent him for blood tests that found he had abnormally high hormone levels. Those results sent him to see Dr. Divya Yogi-Morren, an endocrinologist with Cleveland Clinic who specializes in pituitary diseases.

“I went into the clinic room and I took one look at him and I already knew what he had, just from looking at him and shaking his hand,” Yogi-Morren told CBS News.

She fetched her coworker, Cleveland Clinic neuroendocrinologist Dr. Varun R. Kshettry, with whom she usually sees patients, because she knew his expertise would also be needed.

Yogi-Morren and Kshettry said Kohn had the clinical features of a disease called acromegaly, a rare illness that causes the body to produce too much human growth hormone. The disease is often caused by a tumor on the pituitary gland, and brain surgery is the first line of treatment. Wrestler Andre the Giant, who died of congestive heart failure at 46, also had the condition, which causes cardiac complications. 

“They said ‘If you don’t get this out of your brain, you’re going to die. This is going to kill you,'” Kohn recalled. “And the first thing that I asked was ‘Can I still stunt-jump after this surgery?'” 

What is acromegaly, and how is it treated? 

Acromegaly is a hormonal condition that occurs when you have too much human growth hormone, said Dr. Alice Levine, an endocrinologist at Mount Sinai who studies acromegaly. Levine was not involved in Kohn’s care. People need large amounts of the hormone as a child, but adults need less of it. 

Excess human growth hormone is usually caused by an otherwise benign tumor on the pituitary gland. An MRI found that Kohn had such a tumor: His scan found a nine-millimeter mass, nearly the same size as the 10-millimeter gland.

In a person with acromegaly, human growth hormone also goes to the liver and binds to receptors there, Levine said. That process elevates a different hormone, called IGF-1, which regulates growth and metabolism in the body. 

Those two hormones combined resulted in the symptoms Kohn experienced. Parts of the body, especially bones, just keep growing. A person with acromegaly will also experience fluid retention, soft tissue swelling and other internal issues like pre-diabetes, cardiovascular complications and respiratory issues like sleep apnea. Other hallmark symptoms include the embossed lines in the head, large hands and growth between the teeth — all symptoms that Yogi-Marren and Kshettry immediately recognized in Kohn. 

“He had all the symptoms,” Yogi-Marren said. “He had a symptom in almost every system.” 

It took nearly 10 years for Kohn to be diagnosed and treated for acromegaly. All three doctors told CBS News that this isn’t unusual. Yogi-Marren estimated that there’s usually a “diagnostic delay of about six to 10 years.” Kohn said he was relieved to finally have a doctor who could tell him what was wrong. 

Acromegaly can be hard to diagnose because of the variety of symptoms, Kshettry said, and Yogi-Marren said patients might not realize just how much their bodies are changing.

“From the medical side, acromegaly is one of those diagnoses where it takes a village,” Kshettry said. “It’s not one specialty that can really help these patients. We rely on neurosurgery, endocrinology, ear nose and throat, dermatology, sleep medicine, orthopedics, dentistry, cardiology — all these things. We need the expertise to come together to best take care of patients.” 

In most patients, once the tumor on the pituitary gland is removed, the excess human growth hormone production stops. That then stops the overproduction of the second hormone as well. 

Surgery conducted by an experienced surgeon works about 90% of the time, Levine estimated. If surgery doesn’t work, a person can undergo radiation or use medications to shrink the tumor. The condition can recur, Yogi-Marren said, so doctors usually have regular follow-ups for several years to make sure hormone levels are normal and that there’s no new tumor growth. 

Treating the conditions caused by acromegaly is a different story. While things like soft tissue swelling will be reversed once the excess hormones stop, changes to the bones and other parts of the body can’t be undone. A person with acromegaly would need to undergo corrective surgeries to treat those injuries. 

Getting back to normal life after surgery   

Kohn said that he was used to risking his life in dangerous stunts and has “stared death in the face multiple times,” but the idea of brain surgery had him “scared to death.” It felt more frightening than previous operations, he said. 

“The first thing I asked was can I still (do stunts) after this brain surgery, and they said ‘Yes, you can live your life just like you’ve never had surgery at all,” Kohn said.

Knowing it was his best option, he faced his fear and underwent the 8-hour operation in June 2023. 

Recovery was painful, Kohn said, but his quality of life has increased immensely since. He has lost over 100 pounds in a little over a year. 

His follow-up appointments have been positive, Yogi-Marren and Kshettry said. Typically, they ask a patient to wait about a year after the initial surgery to begin operations to treat lasting physical conditions. Kohn has passed that mark and expects to have a double knee surgery and an operation to repair his jaw in the near future. 

Kohn said that he’s also spoken to the dermatologist who sent him out for extra testing, and thanked her for helping save his life. He has also been able to participate in multiple stunt jumps that untreated acromegaly would have been impossible. 

Doing that, “I felt reborn,” Kohn said. “You know, I had something taken away from me that I live to do, that I love to do. To get back in the car was very special.”