Jim’s Story: Acromegaly / Pituitary Tumor

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Four years later, Jim’s story just keeps getting better. Because four years after being treated for a pituitary tumor at the UC Brain Tumor Center, Jim continues to feel better and better. The size of his head has gone down. It would no longer fill, as one of his children once observed, a 5-gallon bucket. The size of his hands has gone down. And his shoe size has dropped from a 12 to a 10 ½.

“I definitely feel better,” Jim says. “I have considerably more energy. I’m not near as whipped as I was before.”

While Jim and his wife, Jo, were driving home to their farm in Lexington, Kentucky, after a recent visit to see his UC Health endocrinologist, Jo took a long look at her husband. “When you live with someone every day, you don’t see the changes,” she says. “I said, ‘Jim, I never take time in our busy lives to just look at you. Oh my gosh, honey, your head. It would no longer fit in a 5-gallon bucket. How slender it is!’ We’re a little too chunky, but as I tell him, we’re healthy and chunky.”

Jim’s story – his salvation, really – began with enough twists of fate to braid a horse’s tail.

At the last moment Jim decided that for the first time ever, he, and not Jo, would take Jim’s 87-year-old father to his appointment with the dermatologist. And as it turned out, the dermatologist was not Jim’s father’s regular dermatologist, but Dr. Charlie Becknell, of Lexington, who was taking his place. When Becknell greeted Jim’s father and then extended his hand to Jim, a remarkable moment in diagnostic medicine spontaneously occurred.

As Jim recalls, “The guy just got fascinated with my look.”

Refusing to let go of Jim’s hand, Becknell began to ask questions. “Has your nose always been that big? Have your hands always been that big?”

Jim, somewhat flustered at becoming the focus of his father’s dermatology visit, parried each question with a plausible answer: “I work with my hands … My dad’s got a pretty good snout on him … Look at my dad’s hands – he’s a sight, and I’m getting there … I’ve gained weight over the years … The fat’s got to go somewhere.”

But the dermatologist was relentless. He asked whether Jim had skin tags, small, benign growths of hanging skin. “Yes, I have ‘em hanging all over me,” Jim said. He asked whether Jim had developed a space between his teeth. “Yes.” He asked whether Jim had numbness in his fingers. “Yes.” And then he asked Jim to remove his shoes and socks, which revealed feet that had grown from size 9 ½ to 12 since Jim’s wedding 30-plus years earlier.

“Every question he asked related to something I had,” Jim recalls.

Hear Jim tell his story
in his own words on YouTube >>

On the spot, the dermatologist told Jim that he had acromegaly, a condition in which the body produces too much growth hormone and thereby causes tissues to enlarge. The culprit is usually a benign tumor on the pituitary gland. And while the tumor itself is not cancerous, the ultimate outcome can be deadly, as the heart and other internal organs continue to grow.

As Jim sat there processing all that he was hearing, Dr. Becknell pulled out his cell phone and called Jim’s family doctor. The next day Jim had blood tests, which revealed abnormalities consistent with acromegaly, and early the next week he had an MRI, which revealed a marble-sized tumor on his pituitary gland. His next stop, just a few days later, was the Brain Tumor Center at the University of Cincinnati Neuroscience Institute.

At the Brain Tumor Center, Jim and his wife, Jo, met a talented team of doctors: Lee Zimmer, MD, PhD, an ear, nose and throat surgeon (otolaryngologist) with UC Health. Zimmer and the neurosurgical team worked together to create a safe strategy for removing Jim’s tumor.

“Jim had a classic case of acromegaly,” Zimmer says. “He had experienced multiple physical changes and distortions, including a change in head size (and hat size), an increase in nose size, an increase in jaw size and an increase in the gap between his teeth. His glasses had become too small, and he was forced to have his wedding ring resized several times. By the time we saw him, he was unable to wear his wedding ring at all.”

Zimmer notes that Jim did not have some major symptoms that are commonly associated with pituitary tumors, including loss of vision, double vision and headaches.

Within a week, Jim was scheduled to undergo a transsphenoidal pituitary tumor resection at the UC Medical Center. Zimmer began the procedure by inserting a long, tube-like instrument with a light and tiny camera into one of Jim’s nostrils and making an incision at the back of the nasal cavity. Zimmer continued toward the tumor through Jim’s “sphenoid sinus,” an air-filled bony cavity deep in the nose to reach the pituitary gland and tumor.

Once Zimmer had exposed the pituitary tumor, the neurosurgeon removed it with another long, slender instrument that he inserted into Jim’s other nostril.

The entire procedure took 45 minutes.

“Everything went like clockwork,” Jim says “There were some positive effects immediately. I could tell the difference. One of the symptoms I had was sleep apnea. I still have sleep apnea, but it’s totally different.” Jo says she could tell that her husband was breathing more easily even before he left the hospital the next day, a Saturday. The surgeons, she said, “added 15 years to Jim’s life.”

Jim, a foreman who had never missed a day of work before his surgery, was back at the plant full-time within eight weeks. And, in a story-book ending, he was able to slip on his wedding ring for the first time in years.

Today, Jim has followup visits twice a year with his endocrinologist, Michael Canos, MD, and an annual MRI and followup visit with his neurosurgeon, Norberto Andaluz, MD.

“I was very lucky,” Jim says. “All my checkups and reports have been good, and I’ve had no re-occurrences of the growth. Everything has always checked out good.”

— Cindy Starr

*   *   *

Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

 

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