March 29, 2018 01:46 PM

Growing up near Phoenix, Heather Schwan sniffled her way through the seasons, with itchy eyes, scratchy throat and runny nose. Every day, she took a decongestant.

“I used to think if I were ever kidnapped and they put duct tape over my mouth, I would pass out,” she said. “I wouldn’t get enough oxygen through my nose. It’s scary always having to have your mouth open to breathe.”

After she married Luke Schwan, the couple moved to Texas, not far from his army base, Fort Hood. Heather happily worked at her local parks and recreation department.

A year and a half ago, she visited an otolaryngologist in nearby Austin, hoping for a solution to her breathing problems. He suggested a three-pronged approach: a balloon sinuplasty, a septoplasty and a turbinate reduction.

“He said I could go back to work in two days,” says Heather, now 33. “The surgery seemed run-of-the-mill. I was excited to feel better.”

When the anesthesia wore off, however, she sensed trouble. “I felt like my cheekbones had been hit with a bat,” she says. “My nose was bleeding into my throat. I was coughing up blood.” But the doctor insisted the inside of her nose looked fine.

But she couldn’t sleep and she felt like she was suffocating.

Panicked and pacing, she checked the internet. The news was scary. She had Empty Nose Syndrome, or ENS. The rare iatrogenic condition —  one caused by medical treatment — afflicts a tiny subset of turbinate-surgery patients.

Courtesy Schwan family

ENS is caused by damage to the turbinates, cylindrical organs stacked within the nasal cavity — three per side — that warm and humidify incoming air. Dr. Subinoy Das, a rhinologist in Columbus, Ohio, estimates the complication follows 1 in 1,000 turbinate surgeries.

“These outliers are absolutely devastated,” Dr. Das tells PEOPLE. “Even though this surgery is very helpful for making people breathe better, it does come with rare, catastrophic risks.”

ENS is not even a formal diagnosis, but last year, the field had several breakthroughs: A new patient outcome Questionnaire, the ENS6Q, came into use, asking about six specific Empty Nose sensations: Suffocation, burning, openness, crusting, dryness and impaired air sensation. It augments the traditionally used SNOT questionnaire, for Sino-Nasal Outcome Test.

And two studies, from researchers at The Ohio State University in Columbus, showed that patients had distorted nasal airflow as well as damage to turbinate nerves.

“If we could pre-identify the risks, that is how we could move this field forward,” Dr. Das says. He likens the feeling of suffocation to being underwater, unable to surface.

“It’s like you are trying to take a breath of air but your lungs aren’t big enough,” Heather says. The feeling is not alleviated by mouth-breathing. She felt so unwell she had to leave her job.

“I felt tremendous guilt that I was dragging my family through this,” she says. “It’s such a hard thing to comprehend. I lost my sense of well-being.”

 

Courtesy Schwan family

The Schwans, parents to an 8-year-old son, Owen, had been waiting for three years to adopt. Two weeks after the surgery, the phone rang. A baby girl was waiting.

“I was just bawling and saying to my husband: How can I take a child into this life when I can’t even take care of myself?” Heather says. “I questioned our decision to grow our family through adoption.”

But they rushed to pick up little Maya, now nearly 18 months old. “She saved me,” Heather says.

Maya’s arrival felt like a new beginning. “An infant is so attention-consuming,” says Luke, who now works in sales for a packaging company. “Heather was forced to live for someone else.”

And Heather bonded with others online who had similar nasal symptoms. They encouraged her to “push through, even though my life was forever going to look different,” she says.

Last fall, Heather visited Dr. Das, one of three surgeons in the U.S. who provide advanced therapies to ENS patients, with injections to stimulate nerve regrowth or fillers to alter the contours of the nasal cavity. After healing, she saw slight improvement.

She no longer feels she is suffocating all the time. But she does have to think about breathing.

“It is like constantly telling your heart to beat. Breathing is not something you should think about.”

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