Man's unusual tumor halted his growth during teen years

When Jacob Barnes was 12, he mysteriously stopped growing. He watched as his friends began swapping out kid’s clothes for the men’s section and shaving in high school, but while they went through puberty, he just "stayed the same."

“My family doctor was like ‘Jacob, something’s wrong, you look like you are 12, and you’re 16,'” he said.

In 2012, Barnes, who grew up an hour outside of Cleveland, was 17 and only 5-foot-2. He looked like he was in middle school, yet he was two years away from high school graduation.

Looking for answers, his parents took him to the Cleveland Clinic, where he began seeing endocrinologist Patricio Aycinena.

“His hormones were down to almost zero,”  Aycinena said. “There was almost no testosterone; it was like he was 5 years old.”

Aycinena said Barnes' was a one-in-a-million case, and he has only seen two in the 36 years he has practiced.

An MRI revealed that Barnes had a benign tumor on his pituitary gland, a pea-sized gland, which secretes hormones in the body, including those that foster growth.

The tumor on the pituitary gland was pushing on Barnes' optic nerve, according to Daniel Prevedello, a neurosurgeon at Ohio State University Wexner Medical Center, who removed Barnes’ tumor.

“Tumors that grow in this region can be devastating to these kids, many have vision loss, they don't grow, or they can’t control their metabolism," Prevedello said.

Prevedello removed the "thumb-sized" tumor through endoscopic endonasal surgery. He was able to separate the tumor from the pituitary gland and remove it through the nose, in a procedure that almost certainly prevented Barnes from going blind, Prevedello said.

Growing Pains

But although the tumor was gone, Barnes’ road to catching up with his peers was just starting.

“His gland function was destroyed by the tumor, so even with the perfect surgery, the gland didn’t just wake itself up (and start producing hormones),” Prevedello said.

Because Barnes had a complete deficiency of all the hormones that the pituitary gland regulates, he began injecting a cocktail of hormones every night, Aycinena said.

As the growth hormones started to facilitate growth in his muscles and bones, he began noticing changes and experiencing growing pains.

“I grew six inches the first year," he said. "I mean I can remember looking in the mirror, and I could barely see over it, and super quickly I was so much taller."

Four years later,  Barnes, who is now 21, is a little over 6-feet-tall, weighs 242 pounds and wears a size 15 shoe.

“It’s a slow process, because you have to identically follow what the human body is doing,"  Aycinena said.  "You have to give it time for development to grow, and just try to imitate what nature does."

Barnes, who is studying computer science at The University of Findlay, has reached his maximum growth and is now taking a maintenance dosage of growth hormones three times a week, according to Aycinena.

He has an MRI each year to ensure that the tumor has not grown back, and is now getting used to not having to "buy new clothes every two months."

“I had to get a new license this year, and my old license said 5-foot-2, 120 pounds, but now I’m twice the weight and almost a foot taller,” he said. “And I’m happy it happened this way.”

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