MEDFORD, Ore. — Medford resident Betsy Whispell was on her annual wind-surfing vacation on the Oregon Coast last year when a friend she hadn’t seen in a year noticed that her face, hands and feet had grown abnormally large.
“I was wearing a wetsuit on the deck. My hands, feet and face were the only parts sticking out,” Whispell recalls. “She was reluctant to start the conversation, but something in her gut was telling her to speak up. She followed me when I left the deck and said, ‘I think you should be screened for acromegaly. Do you want to know more?'”
Her friend, a research endocrinologist, explained that a pituitary gland tumor can cause an overproduction of growth hormone, leading to acromegaly — abnormal growth in the bones of the hands, feet and face. A rare condition, acromegaly affects an estimated 1 in 250,000 people.
For several years, Whispell had been experiencing a range of symptoms that she didn’t realize were related. When she got out of bed, her feet hurt so much it was painful to walk. They were also growing wider.
“My sneakers were wearing out on the sides,” she says. “I attributed it to cheap shoes.”
Her hands were so swollen she couldn’t close them into fists and had to stop wearing her rings.
Her nose and brow were broadening and becoming more prominent, and her face was inflamed. She became reluctant to have her photograph taken.
Until her friend suggested she might have acromegaly, Whispell, now 58, attributed the assorted problems to arthritis and the gradual effects of aging.
“I saw the stars. She saw the constellation. She saw they added up to a big red flag for this condition,” Whispell says. “Over the span of years, she was seeing snapshots of me at one-year intervals.”
Following her friend’s advice, Whispell went to her doctor, who asked to see an old driver’s license photo. Comparing the photo to how she looked in person, her doctor agreed acromegaly could be to blame.
An MRI revealed a 1-inch tumor in Whispell’s pituitary gland. The gland — located at the base of the brain and normally pea-sized — is called the master gland because it controls several other glands that secrete hormones affecting many aspects of life. Her body was producing 10 times the normal amount of human growth hormone.
After researching medical centers across the nation, Whispell went to the Northwest Pituitary Center at Oregon Health & Science University in Portland for treatment.
In addition to causing pain and changes to a person’s appearance, acromegaly can lead to heart attacks, disabling joint conditions and expansion of critical organs. The tumor can impinge on the optic nerve, causing blindness, according to OHSU.
“Ignoring it was not an option,” Whispell says.
Dr. Maria Fleseriu, director of the Northwest Pituitary Center, says acromegaly can lead to seemingly unrelated health problems, including sleep apnea as tissues in the throat grow. The growing pituitary tumor can also push against carotid arteries that supply blood to the neck, brain and face.
“Everything is growing, including the throat and larynx. The tongue is sometimes growing so much it can be hard to intubate people,” she says.
Despite the serious consequences of acromegaly, there is an average 11-year delay in receiving the right diagnosis, Fleseriu says.
“Most people don’t know they have it,” she says. “They are diagnosed because they get medical tests after they hit their head skiing or have migraine headaches. The discovery of the pituitary tumor is incidental.”
Fleseriu says primary care doctors who see their patients on a regular basis often don’t notice the changes occurring in people’s faces, hands and feet over time.
In some people, the abnormal growth is unmistakable.
Famous people with the condition have included André René Roussimoff, a professional wrestler and actor better known as André the Giant. He did not undergo surgery to remove his tumor and eventually reached 7 feet 2 inches tall and weighed more than 500 pounds. He died of heart failure at age 46.
Pituitary tumors were once thought to be rare, but improvements in imaging technology have allowed doctors to detect small pituitary tumors in as many as 1 in 4 patients. More than 80 percent of such tumors are benign, or noncancerous, according to OHSU.
“We should think of them more than we used to because they are more frequent than we thought,” Fleseriu says. “But we don’t want people to panic because they have a tumor. They have to be counseled that tumors don’t create problems in lots of people. In others, they can create havoc.”
Fleseriu says Whispell’s tumor was particularly large because she was so late in being diagnosed.
Fortunately, her neurosurgeon, Dr. Justin Cetas, was able to able to reach the tumor through Whispell’s nose and sinus cavity. During a five-hour operation in October 2016, he removed the tumor.
A few days after the surgery, Whispell’s feet no longer hurt and she was able to close her hands into fists. Although the excess bone growth won’t go away, cutting out the tumor led to a reduction of inflammation in her face, hands and feet. Four days after surgery, she was released from OHSU.
“It was just a dramatic, dramatic change,” she says. “We live in wondrous times.”
Whispell felt so good she was able to tell friends who had planned to bring dinners during her recuperation that she didn’t need the meals after all.
“I was back at school teaching two and a half weeks after surgery,” says Whispell, a resource room assistant at Lone Pine Elementary School in Medford. “When I get up, my feet don’t hurt and my hands work.”
She went back to her active life hiking, biking, wind surfing and scuba diving. Whispell says she has a little less energy than before, but she previously had an abnormal amount of energy because of the excess human growth hormone.
Without medical intervention, Whispell says she would have become barrel-chested, had more changes to her appearance and would have suffered vision damage.
Whispell says she takes a proactive approach to her health and comes armed with a list of questions to medical appointments. But she hadn’t been asking her regular doctor if the various medical problems she was experiencing might be related and caused by one underlying problem.
She says she is grateful to everyone, including her friend who first noticed the signs of acromegaly and the team at OHSU.
“The experience made me focus on what’s really valuable and important in my life,” Whispell says. “Everything important to my life is still intact.”
Information from: Mail Tribune, http://www.mailtribune.com/