My Surgeon Left Me With A Nightmarish Condition And Others Are At Risk Too

Health

In my 20s, I went for a routine sinus procedure to alleviate chronic sinusitis ― to help me breathe. Ironically, I wound up suffocating and feeling hungry for air every minute of every day for the next 20 years. Instead of helping, the procedure caused horrific and ever-worsening complications ― a cycle of insidious misery that I feared I would not escape until I drew my last dull, stifling, unsatisfying breath.

Imagine finding that an integral part of your nervous system had been hacked away by your trusted doctor without warning, with no pre-surgical notice or discussion of the attendant, potentially life-altering risks. This may seem like the premise of a horror film. But to victims of this tragedy, this enduring, unending terror is real life. And it’s inescapable.

This is empty nose syndrome, or ENS, though it should be called nasal post-operative suffocation syndrome because that’s what it is: a totally avoidable, physician-induced deformity resulting in an as-of-yet incurable and debilitating condition.

During my initial surgery, my turbinates ― what I’ve learned are small but essential organs that sense airflow and signal your brain as to whether you’re breathing ― had been irreversibly damaged. Doctors, including accredited ear, nose and throat surgeons who should have known better but didn’t ― severed vital nerves that were critical to ensuring the proper function of my autonomic nervous system, which governs involuntary functions such as breathing, heartbeat and temperature control. My life, like those of untold numbers of similar victims across the world, would never be the same.

Immediately after my procedure, I experienced a lack of air resistance when breathing and speaking, making these activities that ordinarily came naturally and effortlessly entirely exhausting. I needed to exert great effort simply to project my voice, and for decades I had to catch my breath after speaking just five or six words. I learned how much we take for granted when we’re automatically calibrated to breathe smoothly and fluidly while speaking.

Although I was in fact breathing and getting oxygen, my brain was no longer made aware of it, so it communicated to my body that it was suffocating, triggering an unremitting fight/flight response ― a constant state of alert, as if an unseen danger was always imminent.

Although I was in fact breathing and getting oxygen, my brain was no longer made aware of it, so it communicated to my body that it was suffocating, triggering an unremitting fight/flight response ― a constant state of alert, as if an unseen danger was always imminent. Living in an unrelenting panic state is highly unnatural. The body is trained to fight or flee quickly, to flush our systems with extra cortisol and adrenaline until we’re safe and our hormonal systems can resume normal balance. But chronic cortisol release is exceedingly damaging to body tissues, and it drastically damaged my nervous system.

Along with not sensing myself breathing during the day, and my resulting constant state of anxiety, my brain, perceiving suffocation, woke me up every night by generating nightmares when I drifted off. I began experiencing drenching night sweats, forcing me to change my soaking night clothes and bedding two to three times each night. My brain also signaled my stomach to churn, stimulating fierce acid reflux that burned my throat. I began to try to sleep upright in a reclining chair. I was barely 30.

The suffering didn’t end there: dehydration, dry eyes, ear and facial pain, and the jarring sensation of cold air piercing my lungs whenever I was in an unheated area were miserable, yet mere nuisances compared to the agony of never being allowed to enter into the deeper, restorative levels of sleep ― a torment that’s been used as a torture tactic in war.

Still, there was more: Restlessness and simultaneously feeling exhausted yet wired. Unable to focus or articulate. Not sensing air all day, hyperventilating. The brain shocking the body day and night in a desperate attempt to escape the misperception of suffocation. The continuous coursing of stress hormones catabolizing the body, breaking down precious tissues. Constant, agonizing fear.

Sadly, ENS is purely iatrogenic ― caused by medical intervention ― and it’s a dangerous risk to any one of the hundreds of thousands of people worldwide who undergo elective nasal or sinus procedures where turbinate reduction is performed. Turbinates are essential to our well-being, yet many doctors licensed to practice sinus surgery are shockingly ignorant of the role they play and the danger inherent in carving them away.

The ever-present agony has been described by some victims as ‘life worse than death.’ Many have said they’d rather have died or become paraplegics than live with ENS.

The horrific symptoms of ENS can present the moment you wake from surgery or can emerge slowly as nerves die over time, which can take weeks, months or even years. The inevitable unrelenting panic state that is beyond the victim’s conscious control wears on the mind in many ways while it slowly disintegrates the body, as stress hormones ― the death chemicals ― wreak havoc on every organ system.

Once debilitated by ENS, many have lost their jobs, their homes, their marriages, their families and their independence. For those who develop disabilities, there’s no recourse. Medical science’s unwillingness to recognize ENS as a valid diagnosis makes suing the surgeons largely nonviable, and the typically delayed onset of ENS’s most devastating symptoms places victims’ cases outside of many states’ short one- to two-year statutes of limitations for medical malpractice cases. Tragically, those who end up disabled and unable to work are left with no source of income.

Then there are the suicides. Too many afflicted patients have ended their own lives, having been pushed over the edge not only by the endless suffocation but also by doctors’ ignorance of their condition and dismissal of it as a psychiatric condition as opposed to a legitimate disorder with an identifiable, discrete set of symptoms with little hope of a cure. The ever-present agony has been described by some victims as “life worse than death.” Many have said they’d rather have died or become paraplegics than live with ENS.

The disheartening truth is that ENTs were being warned of the risk but chose to dismiss the suffering of victims, some even ridiculing their suffocating patients as having “empty head syndrome.” As early as the 1920s, surgeons were imploring others not to remove people’s turbinates because they had observed the devastation some patients suffered following the procedure. In the early 1990s, when the phrase “empty nose syndrome” was coined, a medical scholar once again warned the ENT community about the condition because he had found a high suicide rate among his own patients who had undergone nasal surgery.

It is time for the medical establishment to reckon with the truth that thousands of people around the world on every inhabited continent who report the same symptoms have one common thread running through the fabric of their medical history: nasal surgery.

Organs generally are not removed or reduced without full knowledge of the consequences. We know that people can live normally with one kidney or 35 percent of their liver. But no study has even sought to determine how much turbinate tissue can be removed safely while enabling the patient to maintain proper respiratory function.

Surely, if death were an associated risk of turbinate reduction it would be disclosed. Yet no requirement compels ENTs to disclose the risk of living a “life worse than death,” or to obtain informed patient consent acknowledging the risk of ENS when undergoing nasal surgery, leaving patients unaware that they’re entering a lottery they don’t want to win.

I took for granted that my body had been designed to operate on automatic until I was forced into manual operation.

For me, receiving a proper diagnosis was an uphill battle that spanned more than 15 years. Because the medical community offered no solutions, I turned to ancient Eastern thought systems to learn how to influence my central nervous system and endocrine system. I discovered ayurveda and followed the principles set forth by the sages. I learned how to eat, what to eat and when to eat to keep cortisol levels low. I embraced yoga and meditation with consciously controlled breathing during my waking hours. But still, I could not influence my breath once asleep. I learned to sleep in segments. I needed to monitor my internal environment and modulate my external environment for things like temperature and humidity. Above all, I had to mitigate stress.  

Through the years and with these practices, I managed to improve significantly and I reclaimed much of what I had lost in my life. None of this was a cure, of course, but without conscious management of my body, I would not have survived. I took for granted that my body had been designed to operate on automatic until I was forced into manual operation.

Today, more than 20 years and thousands of harmful surgeries too late ― mine included ― there are finally four pioneering North American doctors treating this disorder: Dr. Subinoy Das at the U.S. Institute for Advanced Sinus Care and Research in Ohio, Dr. Steven Houser at MetroHealth in Ohio, Dr. Jayakar Nayak at Stanford Health Care in California, and Dr. Andrew Thamboo at St. Paul’s Sinus Centre in Canada.

While some patients experience improvement from these often painful and expensive procedures, nothing yet cures ENS or fully restores sufferers to their previous levels of health. For some, their suffocation remains unrelenting. And because a diagnosis code for ENS does not yet exist, insurance companies will not cover these new treatment options, making them inaccessible for most ENS sufferers. A diagnostic code, and more research funding, are desperately needed to help not only existing sufferers but the new victims being afflicted every day all around the globe.

In April of this year, I sought treatment with Das. He used a cutting-edge tissue regenerative therapy and I have had good results; an increase in volume and air resistance and my facial nerve pain has resolved. While I still suffer from intermittent suffocation, my overall functioning has improved, and I am able finally to sleep more deeply most nights.

Today I’m taking life one breath at a time.

Barbara Schmidt is a New Jersey-based writer, practitioner of holistic medicine and an advocate for health care justice and reform. Her YouTube series, “ENS: A Matter of Life and Breath,” focuses on exploring the medical condition known as empty nose syndrome. She’s also the wife of an attorney and mom of an energetic little boy.

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