Aug. 5, 2010 2010 -- The Nevada woman suffering from gigantism who was counting on brain surgery to save her life now faces an uncertain future after doctors deemed the procedure too risky.
Tanya Angus, 31, was slated to travel to California for surgery late last month, but has learned the the size and location of the tumor on her pituitary gland leaves her at grave risk for paralysis or even death if she goes in for surgery.
"My heart just bottomed out," Angus' mother, Karen Strutynski, told ABCNews.com. "She's kind of accepted the fact that there's nothing more they can do for her other than take her medicine."
At 6-feet 11-inches and 372 pounds, Angus was of normal height and weight unti her early 20s, when a tumor on her pituitary gland caused her to grow uncontrollably. The condition is known as acromegaly. Hers is the only documented case in the world in which surgery and medications cannot control her growth.
It was the family's hope that doctors would be able to remove enough of the tumor that one of Angus' medications would allow to live another 10 to 20 years.
Now, Strutynski said, her daughter's life expectancy is only for another few years.
"You never give up hope. You never truly give up hope," she said. "If anything happens to her, no, I'm not prepared."
And talking about what may be the inevitable "doesn't make it any easier," she said. "It's dreadful."
She has already had three surgeries. One 13-hour operation nearly killed her, and another caused a stroke that took away most of her hearing.
Dr. John Atkinson, professor of neurosurgery at the Mayo Clinic in Minnesota, hasn't treated Angus, but said today that it is not uncommon for tumors to wrap around the carotid artery if they get too big, as is the case with Angus.
"If they cannot get it under control ... then it will kill her eventually," he said.
For gigantism patients who can be treated safely, they can live a long life with proper medical care, though their distorted features are unlikely to change much, save for a thinning of the tissues.
Patients left untreated, or in rare cases like Angus', ineligible for treatment, will eventually succumb, Atkinson said. He said the problem will not be the tumor, but complications caused by the growth hormone as it floods the body's systems.
Strutynski said her daughter's doctors are now considering another round of radiation -- her last was in 2003 -- to keep the tumor at bay.
Tanya Angus' Case Inspired Paramedics, Doctors to Get Involved
The surgery was to have been the last step in an arduous process. It had been a challenge just to arrange to get Angus from Nevada to California for the surgery.
After hearing Angus' story, paramedics and staff at American Medical Response, an ambulance firm, began calling and e-mailing their bosses, who responded by providing a specialty care transport vehicle that can accommodate Tanya.
"A vehicle like this offers the extra room to make the ride comfortable for her," AMR operations manager Chad Henry told ABC's Las Vegas affiliate KTNV.
The company had offered the super-sized vehicle for free, complete with a trained medical team, for the five-hour ride to Santa Monica.
At the time Strutynski said just the act of getting her daughter to California gave her hope.
Angus had also received numerous financial donations to cover food and lodging during and after her surgery.
An estimated 60 million Americans -- one out of five people -- suffer from pituitary or hormonal disorders, according to the Pituitary Network Association.
Angus, once a beautiful 21-year-old who rode horses, danced and had a boyfriend, one day noticed changes in her 5-foot-8-inch frame: Her shoes didn't quite fit, her jeans were too tight and her hands got bigger.
"She was perfectly normal, but by age 22 she had grown three inches," said her mother. "Nobody knew what was going on."
Angus, who lived in Michigan and was a supervisor at a Walmart, began to worry when even her face and head got larger. Her bosses also noticed -- and fired her. And her boyfriend left when his parents began to ask, "Is she a man?'"
Tanya decided to return home in 2002. When her sister picked her up at the airport, she "freaked out," because she didn't recognize Tanya.
The doctor took one look and diagnosed acromegaly, also known as gigantism, caused by a tumor in her brain that is pushing on her pituitary gland, causing it to produce an excess of growth hormone.
"I don't know how to explain how it is, being a giant," Tanya told KTNV last month. "I put my shoes on in the morning, I'm like, 'Ugh, gosh they're growing again. I'm growing again.'"
Tanya has already outgrown three vehicles, according to Strutynski, 54, a medic who works three part-time jobs.
"If I could stick her on a regular airplane it would be no problem, a couple hundred dollars and she goes, but she doesn't fit," she said.
Sometimes Tanya can squeeze into the passenger seat of their minivan, but since she has the legs of a seven-foot-tall person, it would have been too painful to make the five-hour trip to California.
Acromegaly Affects Organs, Too
"The tumor has been growing from the time Tanya hit puberty," said Strutynski. "Her back is collapsing due to the overgrowth. As she grows her bones weaken and they break down. She is so big, her spine looks like a boomerang."
"When she grows, everything in her body grows -- her lungs, kidneys, bladder," she said. "Her body is literally having a hard time and she is so uncomfortable."
In more than 98 percent of the cases, acromegaly is caused by a benign tumor of the pituitary gland that causes it to secrete excessive growth hormone, according to the Pituitary Network Association.
Acromegaly is not that rare. The University of Maryland Medical Center reports six cases in every 100,000 people, but the association says many cases go undiagnosed or under-treated because doctors are not educated enough about the disease.
If acromegaly is not diagnosed and treated, it can lead to serious damage to vital organs, such as the kidneys, liver, thyroid gland, spleen, pancreas, and parathyroid glands.
Symptoms generally develop slowly over years. Left untreated, it results in altered facial appearance and enlargement of the hands and feet.
In Tanya's case, the medications and prior surgeries have failed to stop the growth.
Her shoes -- 15-1/2 at the moment -- have to be custom-fit and her ring size has jumped from 6-1/2 to 20. Like others with the condition, she has headaches, tiredness and sleep apnea. She wears an oxygen mask at night.
The tumor has also caused arthritis and diabetes insipidus, which makes it hard for her body to maintain hydration.
Though she was once able to walk, her knees can no longer hold her weight, so she is mostly confined to a reclining wheelchair. Lying flat on her back is not only painful, but dangerous because it puts too much pressure on her fragile organs.
Tanya Angus Has High Spirits, Despite Pain
Tanya is on multiple drugs, including a cold, thick Vaseline-like medicine that her mother injects once a month. Much of the medication is for her excruciating pain.
The family has health insurance, but they have already spent $200,000 of their own money on her care. The medicines alone cost $45,000 a month.
"My husband is running out of CDs," said Strutynski. "We bought a 22-foot motor home to travel east, and bought it on a loan and there wasn't enough for a downpayment, so he traded in his Corvette."
Everything in her home is custom made, from her reclining wheelchair to the enormous bed with a specially-padded mattress.
As a former horseback rider and swimmer, Tanya finds being weightless in the backyard pool therapeutic, although it takes two people to get her in the water.
"Karen and Allen [Strutynski] came and wanted a lease for their daughter and told me she had gigantism," said Valle, 53, who lives in New Mexico.
"I thought OK, I have seen that in books, but when I saw Tanya came in -- wow -- she is big, she is really big," she said. "And she weighed a lot more at the time. But her personality came through so fast and her size dissipated and I fell in love with her right away."
"She is the kindest, sweetest, most loving girl," said Valle. "When people meet her they want to give her everything and want to do anything for her."