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

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

But as time went on, he began to notice unusual changes in his body: his head grew too big, he needed a bigger helmet, his hands became too big, and his wedding The ring had to be resized three times. His voice changed. His teeth moved in his mouth, creating an underbite. Despite his extremely active lifestyle, he gained over 100 pounds and was always hungry no matter what he ate.

At the same time, he continued to experience pain in his knees and elbows. Cortisone injections are designed to reduce inflammation and pain, but the effects are not long-lasting. In 2019, he underwent the first of three knee surgeries. He later underwent surgery on his elbow. Nothing works. None of the doctors he saw had an answer – even though knee pain forced him to walk against a wall.

“I was devastated and I didn’t know why,” said Cohen, now 47.

Watching videos of past stunts shows the extent of the changes.

“I was like, ‘Look how much I’ve changed. I’m not getting older. I’m actually transforming.’ Why is this happening?”

In the fall of 2022, Cohen visited a dermatologist after noticing wrinkles on her head. The doctor asked to see his hands and commented on their size. She then examined his tongue, eyebrows and other facial features and sent him for blood tests, which revealed he had abnormally high hormone levels. Those results led him to see Dr. Divya Yogi-Morren, an endocrinologist at the Cleveland Clinic who specializes in pituitary disorders.

“I walked into the clinic and took one look at him and just looking at him and shaking his hand, I knew what he had,” Yogi Moren told CBS News.

She called on her colleague Dr. Varun R. Kshettry, a Cleveland Clinic neuroendocrinologist with whom she often sees patients because she knew his expertise would be needed.

Yogi-Morren and Kshettry said Kohn had clinical features of acromegaly, a rare disease that causes the body to produce too much human growth hormone. The disease is usually caused by a tumor in the pituitary gland, and brain surgery is the first line of treatment. Wrestler Andre the Giant has died at age 46 of congestive heart failure, a disease he also suffered from that can cause heart complications.

“They said ‘If you don’t get this out of your brain, you’re going to die. This is going to kill you,'” Cohen recalled. “The first thing I asked was ‘Can I still do stunt jumps after surgery?'”

What is acromegaly and how is it treated?

Acromegaly is a hormonal condition that occurs when the body has too much growth hormone, said Dr. Alice Levine, an endocrinologist at Mount Sinai who studies acromegaly. Levine was not involved in Cohen’s care. People need large amounts of the hormone as children, but adults need smaller amounts.

Too much human growth hormone is usually caused by a benign tumor on the pituitary gland. An MRI revealed that Cohen had such a tumor: His scan found a 9-millimeter mass, nearly the same size as the 10-millimeter gland.

In people with acromegaly, human growth hormone also enters the liver and binds to receptors there, Levine said. This process raises a different hormone called IGF-1, which regulates growth and metabolism in the body.

The combination of these two hormones causes the symptoms Cohen experienced. All parts of the body, especially the bones, are constantly growing. People with acromegaly also experience fluid retention, soft tissue swelling, and other internal problems such as prediabetes, cardiovascular complications, and respiratory problems such as sleep apnea. Other hallmark symptoms include embossed lines on the head, large hands, and growths between the teeth—all symptoms Yogi-Marren and Kshettry immediately spotted in Cohen.

“He had all the symptoms,” Yogi Mullen said. “He had symptoms in almost every system.”

It took Kohn nearly 10 years to be diagnosed and treated for acromegaly. All three doctors told CBS News this is not unusual. Yogi-Marren estimates there is typically “a delay in diagnosis of about six to ten years.” Cohen said he was relieved to finally have a doctor who could tell him what was wrong.

Kshetri said acromegaly is difficult to diagnose because of the variety of symptoms, and Yogi-Mullen said patients may not realize how much their bodies have changed.

“From a medical perspective, acromegaly is one of those diseases that takes a village to diagnose,” Kshetri said. “No one specialty can really help these patients. We rely on neurosurgery, endocrinology, otolaryngology, dermatology, sleep medicine, orthopedics, dentistry, cardiology — all of these departments. We need expertise to collectively provide the best care of patients.”

For most patients, excess human growth hormone production stops once the tumor on the pituitary gland is removed. This also prevents the overproduction of the second hormone.

Levine estimates that surgeries performed by experienced surgeons have about a 90 percent success rate. If surgery doesn’t work, radiation therapy or drugs may be used to shrink the tumor. The condition can come back, so doctors typically perform regular follow-up visits over several years to make sure hormone levels are normal and no new tumors are growing, Yogi-Marren said.

Treating conditions caused by acromegaly is another story. While symptoms such as soft tissue swelling are reversed once the excess hormones stop, changes to bones and other parts of the body are irreversible. People with acromegaly require corrective surgery to treat these injuries.

Return to normal life after surgery

Cohen said he was used to risking his life performing dangerous stunts and had “faced death many times,” but the idea of ​​brain surgery “scared the hell out of him.” He said it felt scarier than previous surgeries.

“The first thing I asked was, can I still (do stunts) after this brain surgery? And they said ‘Yes, you can live like you never had the surgery,'” Cohen said.

Knowing it was his best option, he faced his fears and underwent the eight-hour surgery in June 2023.

Cohen said the recovery process was painful, but his quality of life has improved dramatically since then. He lost more than 100 pounds in just over a year.

Yogi Mullen and Kshetri said his subsequent appointment was a positive. Typically, they require patients to wait about a year after the initial surgery before starting surgery to treat a lasting medical condition. Cohen has passed that standard and is expected to have double knee surgery and jaw repair surgery in the near future.

Cohen said he also spoke with the dermatologist who sent him for additional tests and thanked her for helping save his life. He was also able to participate in multiple stunt jumps, which would have been impossible with untreated acromegaly.

In doing so, “I felt reborn,” Cohen said. “You know, I lost some of what I lived to do, what I loved to do. Being back in the car was very special.”