Empty Nose Syndrome (ENS): An Underreported Complication After Nasal Surgery

The suicide rate among people suffering from Empty Nose Syndrome is high. Exactly how high remains unknown. No statistics are kept. It is unclear how many people have Empty Nose Syndrome. There are no records of how many people would rather die than live with these symptoms. Nothing is registered. Yet, much is overlooked.

This article is about Empty Nose Syndrome, abbreviated as ENS - a complication that can occur after nasal surgery affecting the nasal turbinates. It is based on conversations with patients, doctors, and the few scientific studies available. The goal is to raise awareness of ENS, enabling consumers considering (cosmetic) nasal surgery to make informed decisions. Additionally, this article appeals to the healthcare system.

People contemplating (cosmetic) nasal surgery must be aware of its potential adverse effects. Most patients affected by ENS underwent functional nasal surgery, such as a septoplasty. However, with the significant increase in cosmetic rhinoplasties, ENS is becoming more prevalent among this group of patients as well.

ENS After Cosmetic Rhinoplasty

ENS came to the attention of wiemooiwilzijn (a platform for aesthetic awareness) through a woman who underwent a cosmetic rhinoplasty and was subsequently unable to breathe "normally." "I live in hell since my surgery," she wrote. We proposed a phone call, but she declined: "I can't talk for long because I quickly get out of breath and start hyperventilating." Doctors she consulted initially suspected burnout or a hyperventilation-panic disorder, which she found plausible given her stressful time. Eventually, she was diagnosed with ENS at Erasmus Medical Center.

In cosmetic rhinoplasty, the focus is primarily on altering the external appearance of the nose. This should not involve damaging the nasal turbinates. Yet, people diagnosed with ENS after cosmetic surgery exist. The Empty Nose Syndrome Awareness Group includes dozens of individuals who developed severe symptoms after purely aesthetic nasal surgery without prior breathing complaints. Patients report that doctors did not inform them about reducing the turbinates, nor were such actions always clearly documented in surgical records.

"I wouldn't have gone through with the surgery if I'd known there were life-altering complications. I miss my old nose. I often think about what I could have done with my life if I hadn’t had that damned surgery." Her contribution to this article is motivated by awareness: "I want to warn people to insist their doctor leaves the turbinates untouched." She advises others undergoing cosmetic nasal surgery to formalize this agreement with their doctor.

A life of agony

ENS leads to a wide range of symptoms, including a persistent sensation of suffocation, a dry and painful nose, chronic panic attacks, and insomnia. One interviewee described their nights as a constant battle: "Every time I fall asleep, I wake up gasping for air. It feels like my body is warning me that I can’t breathe anymore. It’s maddening."

The psychological effects of pain, panic, and insomnia are devastating. Even worse, these patients are often judged based on their mental health issues, a challenge not exclusive to this condition. Women who suffer from illnesses related to breast implants or Botox, for instance, are also often dismissed as "hysterical."

Breathing Connects Body and Mind

The nose is not merely a tube for air to pass through. It is a complex organ composed of tissues and structures that filter, humidify, and warm the air. The turbinates play a crucial role in regulating airflow. "When these structures are damaged or removed," a patient explained, "not only does their functionality disappear, but the experience of breathing also changes."

Western medicine often overlooks the synergy between body and mind. Physical symptoms impact mental well-being and vice versa. A moderator of the ENS Awareness Group on Facebook highlighted this interplay: "Breathing is what connects body and mind. If you've ever done yoga or breathwork, you know how profoundly it can influence the nervous system, emotions, and thoughts."

A Medical No-Man's Land

All ENS patients interviewed for this article followed a similar trajectory: visiting surgeons, general practitioners, and seeking second opinions. They were repeatedly told nothing was wrong. ENS was described as extremely rare, with most doctors claiming they had never encountered it in their careers. Patients contest this, noting that many consulted the same ENT specialists in the Netherlands. The denial of prior cases on these doctors' records raises serious doubts.

This lack of acknowledgment amplifies patients' feelings of isolation. "Almost every doctor I've consulted claims nothing is wrong," said one patient. "They attribute it to mental health problems." Patients find themselves in a medical no-man's land, unseen and unsupported.

One interviewee filed a disciplinary complaint against the ENT specialist who performed their surgery. They admitted being close to suicide during the first year post-surgery due to the hopelessness of the situation. Although the case was dismissed, they found solace in being heard: "If, 40 or 50 years from now, ENS is finally recognized, at least my story will be on record."

Diagnosing ENS

ENS occurs when the nose is physiologically damaged by reducing or removing the turbinates. It is an iatrogenic (doctor-induced) condition.

One significant hurdle is the lack of diagnostic criteria. ENS diagnosis is complex due to varying symptom patterns, resembling challenges in diagnosing Breast Implant Illness. Symptoms can emerge immediately post-surgery or years later, making it harder to link complaints to the operation. This delay may contribute to underreporting.

Diagnosis relies on patient-reported symptoms like poor airflow, a constant feeling of suffocation, and a dry nose. However, visual assessments alone are often insufficient. Advanced techniques such as Computational Fluid Dynamics (CFD), which map airflow, show promise but are rarely used in diagnosing ENS.

Informed consent

Patients have the right to informed consent, meaning they must be fully informed about the pros and cons of a procedure. Doctors should disclose surgical risks. The greater the risk, the higher the duty to provide detailed information. For cosmetic procedures, informed consent carries even greater weight.

Without sufficient data, ENS is not adequately communicated to patients. While the complication is mentioned on the website of the ENT Association, it is rarely discussed during consultations. "I had never heard of ENS before my surgery. The risk was simply not mentioned," said one interviewee.

A call for recognition

ENS remains underreported. Patient forums highlight a concerning trend: a significant number of ENS sufferers commit suicide. "I personally know four ENS patients who have taken their own lives," said one interviewee. "If these figures were officially recorded, immediate action would follow. It’s unacceptable that so many young people die after nasal surgery."

Warnings against damaging nasal structures date back to 1955, yet little has changed. Treatments like hyaluronic acid fillers, stem cell therapy, and rib cartilage implants offer limited relief and remain experimental. Worse, such treatments are often not covered by insurance as ENS is not recognized as a legitimate condition.

Conclusion

A paradigm shift is needed. ENS should no longer be dismissed as a rare or psychological issue. The medical community must acknowledge this as a real problem, initiate data collection, and conduct research.

Without recognition, research, and updated treatment protocols, new victims will continue to emerge. For ENS patients, the impact is all-encompassing: "I never imagined a medical problem would dominate my life. I graduated but can’t work. I’m just exhausted."

For this article, we spoke with four individuals who suffer from ENS and wish to remain anonymous. Their names are known to wiemooiwilzijn. I would like to thank them, the doctors, and the administrators of the Empty Nose Syndrome Awareness Group, Neus.nu, and Neusschelpverkleining.nl for the insights they have provided into the condition and the challenges of ENS.

Sources:

1. Empty Nose Syndrome op Wikipedia: https://nl.wikipedia.org/wiki/Empty_nose_syndrome

2. Computational Fluid Dynamics (CFD) Modeling as an Objective Analatical Tool for Nasal/Upper Airway Breathing, Jennifer Malik, Bradley A. Otto & Kai Zhao, 2022: https://link.springer.com/article/10.1007/s40136-021-00387-x

3. Website van beroepsvereniging KNO-artsen: https://www.kno.nl/patienten-informatie/neus/empty-nose-syndrome/

4. Afbeelding ‘Klinische lessen’ oktober 1955 NTvG, het Nederlands Tijdschrift voor Geneeskunde: empty-nose-syndrome-klinische-lessen-jongkees-wiemooiwilzijn

5. Functional Reconstructive Nasal Surgery, Egbert H. Huizing, John A.M. de Groot, Peter W. Hellings, Ronald L.A.W. Bleys, 2003

6. Empty Nose Syndrome: The Case for “Functional Nasal Obstruction” as a Predisposing Risk Prior to Nasal Surgery, Lu Hui Png, Larry Kalish & Raymond Sacks, 2023: https://link.springer.com/article/10.1007/s40136-023-00487-w