A stuntman knew his physique was altering. It took docs practically a decade to determine why.

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

However because the years went on, he started to note his physique altering in uncommon methods: His head grew a lot that he wanted a bigger helmet, and his palms turned so huge he needed to have his marriage ceremony ring resized thrice. His voice modified. His enamel shifted in his mouth, creating an underbite. He gained over 100 kilos regardless of his extraordinarily lively life-style, and he was continuously hungry it doesn’t matter what he ate. 

In the meantime, the ache in his knees and elbows continued. Cortisone pictures, meant to scale back irritation and ache, by no means lasted lengthy. In 2019, he had the primary of three knee surgical procedures. Later, he’d have operations on his elbow. Nothing labored. No physician he noticed had a solution — whilst knee ache pressured him to cling to the wall to stroll. 

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

Taking a look at movies from previous stunt work confirmed the extent of the adjustments.

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

Within the fall of 2022, Kohn went to a dermatologist after noticing traces kind on his head. The physician requested to see his palms and commented on their measurement. Then, she checked out his tongue, eyebrows and different facial options, and despatched him for blood assessments that discovered he had abnormally excessive hormone ranges. These outcomes despatched him to see Dr. Divya Yogi-Morren, an endocrinologist with Cleveland Clinic who focuses on pituitary illnesses.

“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 instructed CBS Information.

She fetched her coworker, Cleveland Clinic neuroendocrinologist Dr. Varun R. Kshettry, with whom she often sees sufferers, as a result of she knew his experience would even be wanted.

Yogi-Morren and Kshettry mentioned Kohn had the scientific options of a illness known as acromegaly, a uncommon sickness that causes the physique to provide an excessive amount of human development hormone. The illness is usually attributable to a tumor on the pituitary gland, and mind surgical procedure is the primary line of remedy. Wrestler Andre the Big, who died of congestive coronary heart failure at 46, additionally had the situation, which causes cardiac issues. 

“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’s acromegaly, and the way is it handled? 

Acromegaly is a hormonal situation that happens when you have got an excessive amount of human development hormone, mentioned Dr. Alice Levine, an endocrinologist at Mount Sinai who research acromegaly. Levine was not concerned in Kohn’s care. Folks want massive quantities of the hormone as a baby, however adults want much less of it. 

Extra human development hormone is often attributable to an in any other case benign tumor on the pituitary gland. An MRI discovered that Kohn had such a tumor: His scan discovered a nine-millimeter mass, practically the identical measurement because the 10-millimeter gland.

In an individual with acromegaly, human development hormone additionally goes to the liver and binds to receptors there, Levine mentioned. That course of elevates a unique hormone, known as IGF-1, which regulates development and metabolism within the physique. 

These two hormones mixed resulted within the signs Kohn skilled. Components of the physique, particularly bones, simply continue to grow. An individual with acromegaly may also expertise fluid retention, comfortable tissue swelling and different inner points like pre-diabetes, cardiovascular issues and respiratory points like sleep apnea. Different hallmark signs embody the embossed traces within the head, massive palms and development between the enamel — all signs that Yogi-Marren and Kshettry instantly acknowledged in Kohn. 

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

It took practically 10 years for Kohn to be identified and handled for acromegaly. All three docs instructed CBS Information that this isn’t uncommon. Yogi-Marren estimated that there’s often a “diagnostic delay of about six to 10 years.” Kohn mentioned he was relieved to lastly have a physician who might inform him what was unsuitable. 

Acromegaly may be onerous to diagnose due to the number of signs, Kshettry mentioned, and Yogi-Marren mentioned sufferers may not notice simply how a lot their our bodies are altering.

“From the medical side, acromegaly is one of those diagnoses where it takes a village,” Kshettry mentioned. “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 sufferers, as soon as the tumor on the pituitary gland is eliminated, the surplus human development hormone manufacturing stops. That then stops the overproduction of the second hormone as effectively. 

Surgical procedure carried out by an skilled surgeon works about 90% of the time, Levine estimated. If surgical procedure doesn’t work, an individual can bear radiation or use drugs to shrink the tumor. The situation can recur, Yogi-Marren mentioned, so docs often have common follow-ups for a number of years to verify hormone ranges are regular and that there’s no new tumor development. 

Treating the circumstances attributable to acromegaly is a unique story. Whereas issues like comfortable tissue swelling might be reversed as soon as the surplus hormones cease, adjustments to the bones and different components of the physique can’t be undone. An individual with acromegaly would want to bear corrective surgical procedures to deal with these accidents. 

Getting again to regular life after surgical procedure   

Kohn mentioned that he was used to risking his life in harmful stunts and has “stared death in the face multiple times,” however the thought of mind surgical procedure had him “scared to death.” It felt extra horrifying than earlier operations, he mentioned. 

“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 mentioned.

Realizing it was his most suitable choice, he confronted his worry and underwent the 8-hour operation in June 2023. 

Restoration was painful, Kohn mentioned, however his high quality of life has elevated immensely since. He has misplaced over 100 kilos in somewhat over a 12 months. 

His follow-up appointments have been optimistic, Yogi-Marren and Kshettry mentioned. Sometimes, they ask a affected person to attend a couple of 12 months after the preliminary surgical procedure to start operations to deal with lasting bodily circumstances. Kohn has handed that mark and expects to have a double knee surgical procedure and an operation to restore his jaw within the close to future. 

Kohn mentioned that he’s additionally spoken to the dermatologist who despatched him out for further testing, and thanked her for serving to save his life. He has additionally been in a position to take part in a number of stunt jumps that untreated acromegaly would have been unattainable. 

Doing that, “I felt reborn,” Kohn mentioned. “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.”