Diane Maestri figured it out first.
Her husband, Don, is a five-foot-nine, 190-pound handyman from Camarillo, Calif., who looks likes what he is — a retired middle-school gym teacher with big hands and fingers too beefy for rings, too thick to even think about the piano.
About 25 years ago, Diane Maestri realized her husband’s body was changing. Always big, his fingers were so fleshy, he couldn’t see creases of light when he pressed them together. His feet grew, too. The bones in his jaw seemed more protruding.
She scanned a medical dictionary and stopped at “acromegaly.” It’s a rare condition in which a benign tumor on the pituitary gland, at the base of the brain, secretes growth hormone. It’s the same condition suffered by the late Andre Roussimoff, the wrestler better known as Andre the Giant, and towering basketball players ranging from former NBA player Gheorghe Muresan to seven-foot-nine Sun Ming Ming.
When the disorder hits people as children, it can cause massive growth in a condition known as gigantism. When it hits adults, the growth is often focused in the hands, feet and jaw. Ultimately, it can lead to heart failure or colon cancer or pressure on the optic nerve that affects vision.
But when the Maestris asked, a doctor said no. It couldn’t be that.
“He more or less ridiculed my question,” Don Maestri remembered.
In a way, it made sense. Andre the Giant was a seven-footer with a block of granite for a forehead. Maestri looked like anyone else, except that kids in his gym class at Chaparral Middle School in Moorpark would marvel at the size of his hands.
Over the years, he lost dexterity, his fingers so thick it was hard to pick up coins off the floor or to pull the plastic tab off the spout of a milk carton. His shoe size went from 10 to 12.
“It seemed to do it overnight,” he said.
A bicyclist and tennis player, Maestri went through a litany of problems that didn’t seem that unusual for someone who retired recently at age 64. He underwent three back surgeries and three knee replacements. Sometimes at home, he limped after a day of leading sports activities for his students. He never said too much about it.
“He does the best he can, no matter the circumstances,” his wife said. “He’s not the kind who’s going to sit in a chair and feel sorry for himself.”
A “No Soliciting” sign marks the front door of the home the Maestris are fixing up in preparation of moving to a retirement community in Austin, TX. They are private people. Don Maestri decided to tell his story because he wanted people to know how hard it was to get diagnosed. And he wanted to give credit to the doctors who finally solved the whodunit.
Last year, Maestri was at Thousand Oaks Surgical Hospital undergoing his third knee replacement. Dr. Shahriar Ghodsian, a pulmonary and critical-care specialist, was working with Maestri’s orthopedic surgeon. He checked on the patient before and after surgery.
“Something about his voice, his look, the size of his hands, everything just kind of looked a little bit on the outside of the norm,” said Ghodsian, who’s on staff at Cedars-Sinai Medical Center in Los Angeles and has moved much of his practice to Thousand Oaks. He told Maestri he might have acromegaly.
“I just kind of casually mentioned it,” he said.
Maestri was not a believer. He already had been told by a doctor he didn’t have the condition. About a month later, he was having an impacted wisdom tooth pulled in Camarillo by Dr. Marwood Stout, an oral surgeon.
“He took one look at me and asked me if I was aware that I might have acromegaly,” Maestri said.
A blood test confirmed the diagnosis, showing abnormal levels of growth hormone. An MRI revealed a benign tumor on his pituitary gland.
The condition affects about six of 100,000 adults. It’s often not diagnosed because the physical changes occur slowly and subtly, said Dr. Hryar Shahinian, a surgeon whose specialties include pituitary tumors.
“People spend years, sometimes decades without being diagnosed,” he said.
The condition can also cause the heart to enlarge. It can cause polyps to form in the colon.
“We’re talking about heart failure and colon cancer,” said Shahinian, director of the Skull Base Institute in Los Angeles.
On April 27, Shahinian removed a tumor about the size of a garbanzo bean from the base of Maestri’s brain. Rather than going through the skull, he fed a tiny endoscope equipped with a camera through the nostril. It’s a minimally invasive procedure the surgeon helped develop in the 1990s. It’s nicknamed “same-day brain surgery,” and patients usually are released the day after, though Maestri stayed longer.
He was told not to blow his nose initially and to sleep in a reclining chair at an angle. The swelling in his fingers started to subside immediately. In the weeks that followed, his blood pressure gradually fell. He slept better. His shoes felt more spacious.
For the first time in as long as he can remember, he pulled the tab from a milk carton — a triumph that prompted an email to his surgeon.
“It’s incredible,” he said. “The thing I think of most is the enlarged heart and the optic eye nerve. My vision would have gotten worse. I could have died.”
He showered praise on the nurses at Thousand Oaks Surgical Hospital, his surgeon and especially on the doctors who took the time to piece together his symptoms.
“When you stop to think about it, he saved my life,” he said of Ghodsian, later directing the same praise at Stout, the oral surgeon. “He was getting paid to pull out a tooth. He saw something and said, ‘He might have this.’”
Maestri has no way to know definitively whether his knee or back problems were caused by acromegaly. He said he’s not bitter that his condition went undiagnosed for so many years. Instead, he feels fortunate to be diagnosed, to be the benefactor of a series of events he calls a fluke.
“I lucked out,” he said. “I really did.”