Woman With Gigantism Gets Help for Brain Surgery

July 19, 2010— -- Nevada paramedics who were touched by the story of a 6-foot 11-inch woman with gigantism, say they can transport Tanya Angus to life-saving surgery in California next month.

Angus, who is 6-feet 11-inches tall and 372 pounds, is the only known documented case in the world in which surgery and medications cannot control her growth. She has a tumor on her pituitary gland.

She has had three surgeries. One 13-hour operation nearly killed her, and another caused a stroke that took away most of her hearing.

Nearly crushed by her weight, Tanya is scheduled to go to undergo surgery at Saint John's Health Center at John Wayne Cancer Institute in Santa Monica, Calif., sometime this month.

Paramedics and staff at American Medical Response who heard Tanya's story 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 affiliate KTNV.

AMR and Medic West Ambulance respond to nearly 600 emergency calls a day in southern Nevada.

The company has offered the super-sized vehicle for free, complete with a trained medical team, for the five-hour ride to Santa Monica.

"We are honored to help her with this step during such a difficult journey, and wish her and her family our best," said Tony Greenway, an EMT-P and manager of Medic West.

Her mother, Karen Strutynski of Las Vegas, Nevada, said she was overwhelmed with "tears of happiness."

"And there's hope," she told KTNV. "I'm just grateful, truly grateful."

Angus has also received numerous financial donations to cover food and lodging during and after her surgery.

An estimated 1 in 5, or 60 million Americans, suffers from pituitary or hormonal disorder, 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 Wal-Mart, 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 ABC's affiliate KTNV. "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 in to 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.

Two celebrities with the syndrome are Andre the Giant, the French wrestler who died in 1993, and Richard Kiel, who starred in several James Bond films in the 1970s as "Jaws."

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 same 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.

But her spirits are extraordinary, according to her soon-to-be-godmother Tina Valle, who rented an apartment to Tanya and her sister and now runs Tanya's website.

"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."

Tanya's tumor is tangled around her carotid artery, which makes surgery complicated. But if she makes it through, Tanya will undergo another one to reinforce her spine.

"She poses all sorts of big risks, literally and figuratively because of her size," said Dr. Dan Kelly, director of the brain tumor center at St. John's Health Center and John Wayne Cancer. "It makes everything more problematic."

Kelly and Dr. Amin Kassam, director of the Neuroscience Institute, hope to perform Tanya's surgery later this month.

The doctors are currently awaiting hormone test results as they want to have a "good rationale" for surgery before they put Tanya's life at risk once more.

"If we only get 30 percent of her tumor, it's not worth subjecting her to the risk," said Kelly. "If we get 70 to 80 percent, we can help get her growth hormone level to a reasonable range."

Tanya's mother said she is "hopeful" for success.

"Two years ago, they told me she was terminal and I asked, 'Where is her date stamp?'" said Strutynski. "She's a fighter and she knows mom is here and will fight with her."