When his snoring got so bad that he felt lethargic during the day, Mike Smallwood consulted a doctor. The doctor looked inside Smallwood’s nose for what felt like 10 seconds before declaring that he had a deviated septum (the thin piece of cartilage that separates your nostrils) and therefore wasn’t breathing properly at night. All it would take was a minor surgery—a few snips inside his nose to realign his septum and help Smallwood breathe better.
So, Smallwood scheduled the surgery. He’d had a similar procedure for his septum nearly 20 years before, and so he wasn’t too worried. Yet, what his doctors didn’t tell him was that they’d also need to reduce his turbinates (small, fleshy structures inside the nose that clean and humidify air).
In fact, Smallwood had never even heard the word turbinates until an hour before surgery when the nurse handed him a consent form. But he trusted his doctor, so he signed the form and was wheeled off to the operating room. “Shortly after the surgery, I noticed that I couldn’t breathe very well,” he says. “It felt like I had those really skinny bar straws stuck up my nostrils and was trying to suck air in through those tiny holes.”
Those breathing problems never went away. Two years after having that surgery, Smallwood still wakes up at night gasping for air and feels like he’s suffocating during the day, too.
RELATED: 15 Reasons You're Short of Breath
Smallwood has “empty nose syndrome,” a rare complication from nasal surgeries that involve turbinate reduction. In cases like Smallwood's, ENTs (ear, nose, and throat specialists) sometimes decide to surgically remove part of a person’s turbinates because the tissue becomes swollen from allergic reactions, irritation, or infection and can block the person’s airways. Surgeons go inside the nose with a needle-like instrument that transmits radiofrequency waves that destroy some of the turbinate tissue. “Usually there's no pain on the recovery process, no change on the physical aspect, and no long-term side effects,” according to Stanford Health Care.
If too much of the tissue is removed, however, it can fundamentally alter the way air flows through your nose. The way our noses are structured forces air into a specific pathway in through the nostril and down to our lungs. With wide-open nasal passages, “instead of having a jet stream to the back of the nose, the air would flow more like a tornado,” says Christopher Kolstad, MD, a board-certified otolaryngologist and facial plastic surgeon.
But turbinates also have a role in warming up the air you breathe in, filtering the air, and humidifying it. So, in addition to struggling to breathe, people who have ENS are also prone to nosebleeds, nasal infections, headaches, dizziness, and a feeling like they're breathing in ice-cold air.
RELATED: 11 Reasons You Have a Stuffy Nose–and What to Do About It
The condition is rare—some estimates say 1 in 1,000 people who have turbinate surgery get ENS—and controversial, says ENT Andrew Ordon, MD, associate professor of plastic surgery at USC, and co-host of The Doctors. Some in the medical community don’t formally recognize empty nose syndrome as a legit diagnosis, and more research on the condition is needed. But for people like Smallwood, the side effects of this surgery aren’t only long-term, they’re drastic and life-changing.
Before his surgery, Smallwood was on track to become a gym teacher. He’d finished his college degree and was waiting to take the certification test he’d need to teach physical education. Now, he can’t imagine trying to take the test; not when every breath feels like a struggle.
Even holding down steady work as a substitute teacher is difficult, because he’s so tired he can’t remember his students’ names. “I have horrible dreams about drowning or that someone is standing over me and holding a pillow against my face,” Smallwood says. During the day, he can remind his brain that even though he can’t feel it, he is breathing—“or else I’d be blue and on the floor,” he says. But at night, his brain has no reassurance and so Smallwood feels like he’s dying.
Empty nose syndrome is often more difficult to handle at night because our bodies are conditioned to breathe through our noses while we’re sleeping, Dr. Kolstad says. Yet, even breathing through the mouth likely wouldn’t make much difference, because sinuses in a person’s nose sense air pressure whether it comes through the mouth or nose.
RELATED: This 36-Year-Old Literally Coughed Up His Lung Before He Died
The mouth-breathing question is a common misconception among Smallwood’s friends: “Why don’t you just breathe through your mouth,” they ask him. Many of his friends have become exacerbated with him because they can’t understand what he’s going through. “There are days [when my best friend would] want to talk and I just can’t even talk to him because of the nerve pain in my nose.” (For some people with ENS, facial pain is another symptom).
Smallwood has already lost a few friends who got fed up with his tendency to cancel plans or flat-out refuse to hang out because he was too tired or in too much pain. Part of the problem, he thinks, is that people can’t imagine what he’s going through. “If it was something they’d heard about, like cancer or diabetes, they’d understand,” he says. “You just feel so alienated because [ENS] is so bizarre and strange.”
Unfortunately, there’s no real way to fix it. “You can’t put the turbinates back in,” says Dr. Ordon. The best solution doctors have now is to do another surgery to try to restructure the nasal airflow, but that’s only an option in the most extreme cases. It wouldn’t help someone like Smallwood, whose turbinates were only reduced by 10%. He, like many others, simply has to live with the condition as best as he can.
To get our top stories delivered to your inbox, sign up for the Healthy Living newsletter