‘I’ve Been Given My Life Back’ – Woman Suffering From Rare Disease Gets Much-Needed Surgery, Treatment
The 52-year-old Klamath Falls woman changed ring sizes half a dozen times. A hairdresser by trade, she retired after her hands got too big to fit through the scissors. Her lips filled out, too; her sister accused her of getting injections. Curtiss bit her tongue often; it was also growing.

She never associated these symptoms with a serious and potentially fatal disease.

She did know something was wrong. She hurt everywhere. She couldn’t sleep at night because no position was comfortable. Instead, her nights were a rotation: first tossing and turning in bed, then moving to a recliner, then to the couch and finally to the floor. “I hurt so bad,” Curtiss said. “The only way I could describe it to the doctor was that I felt like I had been hit by a truck.”

Her blood pressure was high. Curtiss was tested for lupus, fibromyalgia, rheumatoid arthritis, heart problems and more. Each test came back negative. The solution to the mystery came nearly five years after her symptoms appeared and came from an
unlikely place: a spa.

Curtiss had treated herself to Fraxel laser treatment, an anti-aging regimen, at Northwest Medi Spa in Bend. When the spa’s owner, anesthesiologist Dr. Rebecca Nonweiler was giving her a treatment, she commented on Curtiss’ large toes. Curtiss told the doctor her feet had continued to grow. That doesn’t usually happen to adults, Nonweiler replied, and asked to see Curtiss’ hands.

Noticing that those were also large and that her lips were inflated, Nonweiler told Curtiss that she had some of the primary symptoms of a rare but serious disease. She wanted her to be checked right away.

“She had some coarse features,” said Nonweiler. “Kind of large hands and feet with club-like toes.” Nonweiler said she then talked to her about her symptoms. Right away, she said, she began to suspect acromegaly.

About 1,000 people in the United States develop acromegaly each year, according to the National Institutes of Health. In most cases, including Curtiss’, the disorder is caused by a non-cancerous tumor that stimulates extra production of growth hormone. That hormone spurs the body to grow, first in the hands and feet and later in the face. It can also lead to an enlarged heart, increasing the risk of cardiovascular disease and an increased risk of colon cancer.

The diagnosis

After Nonweiler’s assessment, Curtiss drove back to Klamath Falls and looked up the disease online. Though she had many of the symptoms, she didn’t act on Nonweiler’s recommendations right away. “I said I don’t want any part of this disease, and I’m not having it.”

But a month later, at a routine physical, Curtiss brought the issue up with her primary care doctor. He ordered a blood test that showed she was positive for acromegaly. Medical records provided by that office confirm the diagnosis.

Several days later, Curtiss was up in Bend again. This time, she brought flowers to Nonweiler. “I said, ‘I think you just saved my life,’” Curtiss said. “I had tears in my eyes because as much as I didn’t want to have this disease, I was so thankful we could do something and treat it.”

Nonweiler said she had seen patients with acromegaly before, though not often. She didn’t think of her diagnosis as anything special, she said. “I’m sure there were plenty of doctors that would have picked up on it,” she said. “It’s not that I’m more experienced than anyone else. It’s just that I listened to her.”

Because of the rarity of her disease and the likelihood that surgeons would have to remove a tumor at the base of her brain, Nonweiler recommended that Curtiss be seen by specialists at the University of California, Los Angeles.

She had the surgery in Los Angeles in the middle of September. Prior to her operation, doctors had told her they were likely to be able to remove 55 percent of the tumor; after surgery they told her they had removed 99 percent.

These days, she is still in recovery. The tumor affected her metabolism and she has gained weight, lowering her energy and causing depression, she said.

She will need to take injections to keep her growth hormones in check, she said, and check the levels of the hormones often.

Still, many things are better. She sleeps through the night. Her face looks as it did before. Her husband, she said, told her that he can see expressions on her face he hasn’t seen in years. She expects to live a full and normal life.

“I felt like I was thrown a lifeline, and Rebecca was my lifeline,” she said. “I’m so grateful to her and just thankful that I actually feel like I’ve been given my life back.”

By Betsy Q. Cliff / The Bulletin

Published: December 25. 2008 4:00AM PST

Learn about Dr. Morton’s experience and credentials here.