A stuntman knew his physique was altering. It took medical doctors almost 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.

But 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 massive he needed to have his marriage ceremony ring resized thrice. His voice modified. His tooth shifted in his mouth, creating an underbite. He gained over 100 kilos regardless of his extraordinarily lively way of life, and he was always hungry it doesn’t matter what he ate. 

Meanwhile, the ache in his knees and elbows continued. Cortisone pictures, meant to cut 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 — at the same time as knee ache pressured him to cling to the wall to stroll. 

“I used to be falling aside, and I did not know why,” Kohn, now 47, stated.

Looking at movies from previous stunt work confirmed the extent of the adjustments.

“I used to be like ‘Look how a lot I modified. I’m not rising outdated. I’m really remodeling.’ Why is that this occurring?” 

In the autumn 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 dimension. 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. Those 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 take a look at him and I already knew what he had, simply from him and shaking his hand,” Yogi-Morren advised CBS News.

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 stated Kohn had the scientific options of a illness known as acromegaly, a uncommon sickness that causes the physique to supply an excessive amount of human progress hormone. The illness is usually brought on by a tumor on the pituitary gland, and mind surgical procedure is the primary line of therapy. Wrestler Andre the Giant, who died of congestive coronary heart failure at 46, additionally had the situation, which causes cardiac problems. 

“They stated ‘If you aren’t getting this out of your mind, you are going to die. This goes to kill you,'” Kohn recalled. “And the very first thing that I requested was ‘Can I nonetheless stunt-jump after this surgical procedure?'” 

What is acromegaly, and the way is it handled? 

Acromegaly is a hormonal situation that happens when you may have an excessive amount of human progress hormone, stated Dr. Alice Levine, an endocrinologist at Mount Sinai who research acromegaly. Levine was not concerned in Kohn’s care. People want giant quantities of the hormone as a toddler, however adults want much less of it. 

Excess human progress hormone is often brought on by 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, almost the identical dimension because the 10-millimeter gland.

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

Those two hormones mixed resulted within the signs Kohn skilled. Parts of the physique, particularly bones, simply continue to grow. An individual with acromegaly may also expertise fluid retention, mushy tissue swelling and different inside points like pre-diabetes, cardiovascular problems and respiratory points like sleep apnea. Other hallmark signs embrace the embossed traces within the head, giant palms and progress between the tooth — all signs that Yogi-Marren and Kshettry instantly acknowledged in Kohn. 

“He had all of the signs,” Yogi-Marren stated. “He had a symptom in nearly each system.” 

It took almost 10 years for Kohn to be identified and handled for acromegaly. All three medical doctors advised CBS News that this is not uncommon. Yogi-Marren estimated that there is often a “diagnostic delay of about six to 10 years.” Kohn stated he was relieved to lastly have a health care provider who may inform him what was flawed. 

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

“From the medical aspect, acromegaly is a kind of diagnoses the place it takes a village,” Kshettry stated. “It’s not one specialty that may actually assist these sufferers. We depend on neurosurgery, endocrinology, ear nostril and throat, dermatology, sleep medication, orthopedics, dentistry, cardiology — all these items. We want the experience to come back collectively to finest handle sufferers.” 

In most sufferers, as soon as the tumor on the pituitary gland is eliminated, the surplus human progress hormone manufacturing stops. That then stops the overproduction of the second hormone as properly. 

Surgery performed by an skilled surgeon works about 90% of the time, Levine estimated. If surgical procedure would not work, an individual can bear radiation or use medicines to shrink the tumor. The situation can recur, Yogi-Marren stated, so medical doctors often have common follow-ups for a number of years to verify hormone ranges are regular and that there isn’t any new tumor progress. 

Treating the situations brought on by acromegaly is a unique story. While issues like mushy tissue swelling shall be reversed as soon as the surplus hormones cease, adjustments to the bones and different elements of the physique cannot 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 stated that he was used to risking his life in harmful stunts and has “stared demise within the face a number of instances,” however the thought of mind surgical procedure had him “scared to demise.” It felt extra horrifying than earlier operations, he stated. 

“The very first thing I requested was can I nonetheless (do stunts) after this mind surgical procedure, and so they stated ‘Yes, you possibly can dwell your life similar to you’ve got by no means had surgical procedure in any respect,” Kohn stated.

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

Recovery was painful, Kohn stated, 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 constructive, Yogi-Marren and Kshettry stated. Typically, 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 situations. 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 stated that he is additionally spoken to the dermatologist who despatched him out for additional testing, and thanked her for serving to save his life. He has additionally been capable of take part in a number of stunt jumps that untreated acromegaly would have been inconceivable. 

Doing that, “I felt reborn,” Kohn stated. “You know, I had one thing taken away from me that I dwell to do, that I like to do. To get again within the automobile was very particular.”