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 massive he needed to have his wedding ceremony ring resized 3 times. 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.
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 — at the same time as knee ache compelled him to cling to the wall to stroll.
“I was falling apart, and I didn’t know why,” Kohn, now 47, mentioned.
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?”
Ray Kohn.
Ray Kohn
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 ailments.
She fetched her coworker, Cleveland Clinic neuroendocrinologist Dr. Varun R. Kshettry, with whom she normally 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 referred to 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 Big, who died of congestive coronary heart failure at 46, additionally had the situation, which causes cardiac problems.
“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’ve gotten an excessive amount of human progress hormone, mentioned Dr. Alice Levine, an endocrinologist at Mount Sinai who research acromegaly. Levine was not concerned in Kohn’s care. Folks want giant quantities of the hormone as a baby, however adults want much less of it.
Extra human progress hormone is normally 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 measurement because the 10-millimeter gland.
In an individual with acromegaly, human progress hormone additionally goes to the liver and binds to receptors there, Levine mentioned. That course of elevates a unique hormone, referred to as IGF-1, which regulates progress 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 can even expertise fluid retention, tender tissue swelling and different inner points like pre-diabetes, cardiovascular problems and respiratory points like sleep apnea. Different 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 the symptoms,” Yogi-Marren mentioned. “He had a symptom in almost every system.”
Acromegaly may be onerous to diagnose due to the number of signs, Kshettry mentioned, and Yogi-Marren mentioned sufferers won’t understand simply how a lot their our bodies are altering.
A 3-D illustration evaluating a person with acromegaly (left) and the identical wholesome man (proper).
KATERYNA KON/SCIENCE PHOTO LIBRARY
“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 progress hormone manufacturing stops. That then stops the overproduction of the second hormone as properly.
Surgical procedure performed by an skilled surgeon works about 90% of the time, Levine estimated. If surgical procedure doesn’t work, an individual can endure radiation or use medicines to shrink the tumor. The situation can recur, Yogi-Marren mentioned, so docs normally have common follow-ups for a number of years to ensure hormone ranges are regular and that there’s no new tumor progress.
Treating the situations brought on by acromegaly is a unique story. Whereas issues like tender tissue swelling shall be reversed as soon as the surplus hormones cease, adjustments to the bones and different elements of the physique can’t be undone. An individual with acromegaly would want to endure 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 scary 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.
Ray Kohn in 2024. He mentioned he has misplaced weight however continues to be planning to endure surgical procedures to restore injury brought on by the illness.
Ray Kohn
Restoration was painful, Kohn mentioned, however his high quality of life has elevated immensely since. He has misplaced over 100 kilos in a bit over a yr.
His follow-up appointments have been optimistic, Yogi-Marren and Kshettry mentioned. Usually, they ask a affected person to attend a couple of yr 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 mentioned that he’s 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 unimaginable.
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.”
