March 13, 2012 at 6:05 PM ET
For three years in a row, Sultan Kosen has been named the world's tallest living man by Guinness World Records. Interestingly, he's earned this lofty distinction at three different heights. Even more fascinating, in the last three months, the 29-year-old Turkish man has only recently stopped growing thanks to receiving state-of-the-art treatment in the U.S.
Kosen first entered the record books at 8 feet 1 inch; at his next measurement, he was listed as 8 feet 2 inches, and now he's achieved his ultimate adult height at 8 feet 3 inches. He's also in the record books for having the largest hands (11.22 inches) and largest feet (14.4 inches).
"That tumor is not cancerous and it is not a brain tumor," says Dr. Mary Lee Vance, an endocrinologist at the University of Virginia Health System in Charlottesville, Va. "A spontaneous mutation causes the tumor, and it's not hereditary," she explains. Kosen's parents and siblings are all average height.
Vance first learned of Kosen's case and first saw him as a patient in the spring of 2010. The Discovery Channel was doing a show on Kosen as the "World's Tallest Man," and Vance, as an expert in pituitary tumors, was asked to appear on it.
She put Kosen on a new medication (he was already taking two others) to try to bring down his growth hormone levels to a normal range. But medication alone would not be enough, so Vance consulted with a neurosurgeon to explore other options.
Although his pituitary tumor was diagnosed when Kosen was 10 years old, efforts in his native Turkey and elsewhere in Europe to stop the tumor's growth were unsuccessful. He had three prior surgeries attempting to remove the tumor as well as radiation treatment, but Kosen kept growing and growing.
"As he was growing taller and taller, he kept getting sicker and sicker," says Dr. Jason Sheehan, a neurosurgeon at the University of Virginia Health System, who also treated Kosen. "He had a very aggressive tumor involving the base of his skull and brain that was in a very difficult location to remove," he explains.
It seems being this tall comes at a steep price. "The human body and heart is not well designed for a person who is 8 (feet) tall," points out Sheehan.
As a result, Kosen's skeletal frame was so big that his joints, bones and muscles were weak in relation to his height. He has joint problems and can't walk without crutches. He had visual problems because the pituitary tumor got so big it was pressing on the nerves of his eyes.
In August of 2010, Dr. Sheehan performed gamma knife radiosurgery. This procedure uses focused beams of gamma rays, which deliver high-energy radiation, and is guided by MRI to targeted points in Kosen's brain.
"Every step of the way, we had to do accommodations for Sultan's height," says Sheehan. In the operating room and during his recovery they had to put two normal-sized hospital beds together. They needed to buy a specialized frame for Sultan's large head size to map out where the gamma rays would go.
Although Kosen did not speak English and had an interpreter with him, Sheehan described him as "a gentle giant," who "knows how to charm people." Kosen also wanted to get his medical condition under control because he wanted to enjoy life more and hopefully get married one day.
But the gamma knife surgery is not an instant fix, points out Sheehan, and "it takes one to two years for the full effects of surgery to be realized."
Just three months ago, Dr. Vance and Dr. Sheehan learned that Kosen's height had finally stabilized and he had stopped growing. The tumor has also stopped growing as has the overproduction of growth hormone.
Although the surgery does not make Kosen shorter and he is still at risk for some health problems because of his towering height, Sheehan says the surgery at least limited any additional risk.