Tucson woman's tale of brain-fluid leak makes her an Internet star

2012-12-05T00:00:00Z 2014-07-30T17:17:51Z Tucson woman's tale of brain-fluid leak makes her an Internet starStephanie Innes Arizona Daily Star Arizona Daily Star
December 05, 2012 12:00 am  • 

Tucson resident Aundrea Aragon's unusual story of spending four months with brain fluid leaking from her nose has gone viral.

Aragon, 35, found out about her surprising fame late Monday and was fielding calls with interview requests from local, state and national media throughout Tuesday.

"I didn't get much sleep. I had the weirdest dreams. I'm just trying to soak it in," she said. "I think people are horrified about what happened."

Aragon can scarcely believe it herself. The rare condition that could have killed the mother of three began with a sinus infection in May.

The infection turned into fluid coming out of her nose. The fluid had no mucus or color. Rather, it was tasteless, odorless and looked exactly like water. She describes it as streaming to the point of causing puddles.

Sometimes the cerebrospinal fluid was flowing out so much that she had to put toilet paper in her nose, changing every 15 minutes.

"I was literally choking on it, waking up at night. It was dripping down my throat," Aragon said. "It pretty much always poured. My chest was hurting, and I was not sleeping."

Over the next few months, Aragon saw several doctors who thought it was allergies and gave her nasal spray, steroids and antibiotics. But she was positive it was something else and was determined to get an answer.

A local ear, nose and throat doctor figured out the problem and sent Aragon to two local surgeons she credits with saving her life. Drs. Alexander G. Chiu and G. Michael Lemole were able to repair two small cracks in the back wall of Aragon's left sphenoid sinus by going through her nose rather than cutting into her head.

The sphenoid sinus is at the back portion of the nose, right under the brain. Chiu compares it to a house where the brain is the house, the sphenoid sinus is the front door and the nose is the front lawn. Fluid surrounding Aragon's brain was moving from the house onto the front lawn - a path it's not supposed to take.

Before the cracks were repaired, Aragon was not at risk of losing too much brain fluid, since the body replaces it. But she was at a high risk for developing a lethal meningitis infection. Even something like a cold or a sinus infection could turn deadly.

Chiu and Lemole often see patients with cracked sphenoid sinuses, but it is nearly always caused by a trauma or after surgery.

Aragon's case is unusual - about one in 100,000 - because there's no clear explanation for the cracks, said Chiu, chief of the division of otolaryngology at the University of Arizona Medical Center.

"The spontaneous leaks are very rare, and I'll only see maybe four or five of those a year," he said. "When I was at Penn (University of Pennsylvania), my partners and I wrote up our spontaneous CSF (cerebrospinal fluid) leaks over a 10-year period of time, and that was roughly 90 patients. And that's at a major academic referral center in the country."

Patients and medical providers often don't recognize the condition. Chiu has had patients who endured leaks for seven or eight years before getting treatment.

"Commonly patients will say they wake up with their pillow all wet," he said. "I've had teachers who have said they're embarrassed because they'll go to grade a paper and they'll drip out on the paper."

Chiu and Lemole, who is chief of the division of neurosurgery at UA Medical Center, were able to fix the cracks in Aragon's sinus by going through her nose.

The surgeons used image-guided neuronavigation and dye to help find the cracks.

"The CSF is colorless. We can't distinguish between that and a regular booger sometimes," Chiu said. "So what Dr. Lemole did was put a lumbar drain in and inject some through that lumbar drain, and the dye is green. So the dye circulates through the CSF fluid and then where it comes out in the nose is where the leak is ...

"These are tough cases to do."

They then used tissue from inside Aragon's nose, as well as a small piece of belly fat, to repair the cracks and stop the leak.

Chiu, who came to Tucson in 2010 to establish a Center for Sinonasal and Skull Base Tumors with Lemole, said as recently as three years ago Aragon would have had her condition fixed with a craniotomy in Tucson, or she would have been sent out of state for surgery.

A craniotomy - cutting into the skull - would mean a painful recovery, extensive scarring and possible side effects such as a loss of sense of smell. Aragon has no incisions on her head and is now nearly recovered.

For Aragon, the experience underscored how loving her family is, and it also was a reminder that patients are their own best advocates.

The night before the Oct. 1 surgery, Aragon was up until 3 a.m. writing letters to her children in case she didn't survive. Her children range in age from 9 to 16. She was particularly worried about her youngest, who has autism. Her family also includes her husband, Anthony, who works at Safeway.

"I made them each a little frame and put a picture of me and a song that reminds me of each one so they'd have it," she said. "I was scared. I was making preparations."

She recently wrote about her successful surgery in a Facebook posting, and expressed her gratitude to Chiu and Lemole and the staff at the UA Medical Center.

Though she couldn't be happier, she's baffled about becoming an Internet star.

"It's been a whole whirlwind," she said.

On StarNet: Stephanie Innes brings you the latest health information in her blog, Tucson Health and Wellness, at azstarnet.com/news/blogs/health

Contact reporter Stephanie Innes at sinnes@azstarnet.com or 573-4134.

Copyright 2014 Arizona Daily Star. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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