The Pain of Breathing for Patients with Empty Nose Syndrome (ENS)

Introduction: Two years ago, when the second trial of the Wenling doctor-killing case opened, the defense lawyer of the defendant Lian Enqing mentioned the concept of "empty nose syndrome" for the first time in court. Because the public knows little about empty nose syndrome, some patients are believed to have mental illness, which has become a hidden pain for this patient group - the disease is always with them, but it is difficult to diagnose and is not understood. The audio file below is sourced from a Chinese radio channel that reads parts of the Beijing News article:

The Pain of Breathing for Patients with Empty Nose Syndrome

Original author: Luo Ting, Wang Jingyi
The audio file consists song Yu's selected readings from the mentioned article. 

The radio program was broadcasted 2016/11/30

In the embedded audio file below you will explore personal stories from individuals suffering from Empty Nose Syndrome after surgeons removed or reduced their Turbinates. In the radio program, they describe their difficulties with breathing, their mental health, and societal misunderstandings. Various medical perspectives are explored, including diagnoses, symptoms, and potential causes of the syndrome.

Additionally, the audio file touches on nasal anatomy, specifically focusing on the role of the turbinates in regulating airflow and maintaining nasal function. Throughout the article, personal anecdotes, medical insights, and scientific explanations are interwoven, providing a comprehensive overview of the condition Empty Nose Syndrome.

Below the embedded video, you can read a version where the Chinese audio file has been translated into English. The audio file includes embedded English subtitles. If you prefer other languages, you can select them by clicking on the settings icon in the video on YouTube.

 

Transcript of the audio file:

00:00

Welcome everyone to today's program. I am Song Yu. I am here today for everyone reading the article: The Pain of Breathing for patients with Empty Nose syndrome: This is from the New Beijing News two years ago. During the second trial of the Wenling murder case, the defendant Lian Enqing's lawyer first mentioned the concept of Empty Nose Syndrome in court. Because the public knows very little about Empty nose syndrome, some patients are believed to have mental illnesses…

00:40

This disease actually seems normal on the surface, but underneath it is truly terrifying. It's unbearable all the time, I've tried to commit suicide twice. My mother saved me both times... Some doctors don't understand this disease and tell you to go to a psychiatrist which means this has become a hidden pain for this patient group.

01:01

The disease follows like a shadow and is difficult to diagnose. Not well understood, only patients with the same condition can understand the suffering. Today we will talk about the pain of breathing for people with empty nose syndrome… Sun Su Lin could hardly wait to enter the shower room and turn on the hot water, steam quickly filled the entire small space.

1:30 am

She inhaled greedily, wishing she could breathe all the hot steam into her nose. This warmth and moisture in her nose means a lot to her and is really precious. Since the nose operation in 2013, breathing has become an exhausting task for Sun Sulin. Nasal congestion, pressure on the chest and even suffocation are now everyday experiences..

01:59

She once saw her badly damaged nasal mucosa on camera, it was pale, pale as a white dessert. According to several hospital diagnoses, she had Empty nose syndrome. Empty nose syndrome, a term never before seen in medical textbooks. Han Deming, an academician of the Chinese Academy of Engineering and a professor at the Tongren Hospital ENT Department, defines it as a post-surgical complication.

02:22

Studies show that with destructive nose surgery, 20% of patients may develop Empty Nose Syndrome, but Han Deming believes this number may be higher. The concept first entered the public consciousness two years ago during the second trial of the Wen Lingsha case, when the defendant Lian Enqing's defense lawyer brought up Empty nose syndrome. Since then, it began to enter the public consciousness, and more and more sufferers of Empty Nose Syndrome began to speak up.

02:50

This is a condition that is painful every second, every minute, because the nose is always like this. You have to breathe like this ¨every second, every minute. It is very unpleasant. I am now at home every day. After the surgery I was so stressed and never sat down, walked around and around and couldn't relax. It was so unpleasant that I just wanted to cry.

03:05

At the time I was thinking of taking a small lid and pinching it under my nose, but that method is really not scientific. As a person, I look normal on the surface, but in reality I'm horrible. The mental and emotional destruction is greatest. Because the public knows very little about Empty Nose Syndrome, some patients are thought to have mental illnesses.

03:32

This also becomes a hidden pain for this patient group. The disease follows them like a shadow, but their disease is difficult to diagnose and not well understood. Breathing, a simple and everyday task for most people, but for patients with Empty Nose Syndrome, this ordinary task becomes incredibly exhausting. Stay tuned to the show for more information on the breathing pain related to Empty Nose Syndrome.

04:08

Sun Su-lin is 45 years old, has a round face and smiling eyes. Some think she looks like the famous comedian Jia Ling. As a mid-level manager in a foreign company in Shanghai, her life used to be comfortable and pleasant. But a major turning point in life came because of a small choice. In December 2013, due to itching in her ear canal, Sun Su-lin went to the ENT department of a hospital in Shanghai.

04:37

An elderly female doctor examined her and said that the ear, nose and throat are connected. The ear infection was actually caused by the nose, and the nose needed treatment first. Sun Su-lin says she naively accepted nose treatment under the doctor's guidance. She remembers that the doctor said it was not a classic operation, nor was there a no-consent form for the operation.

04:53

A thin metal tube was inserted into her nose and passed back and forth. The process lasted about half an hour. The billing statement showed that Sun Su-lin underwent about ten procedures, including partial resections of the lower and middle turbinates. In the days following the operation, her wound gradually healed, but other discomforts began to appear.

05:11

Sun Su-lin began to feel that the air was too dry and cold, and she often experienced chest tightness and headaches, and sometimes even a vague feeling of suffocation. On March 26, 2014, while walking home from work, she was suddenly overwhelmed by a feeling of suffocation. Chest tightness, palpitations and shortness of breath.

05:34

She collapsed by the side of the road, terrified and wanted to cry, but there was no sound. She said it felt like a heavy stone was pressing on her chest, and she thought she was going to die. She struggled to get home and her mother performed basic CPR. The feeling of suffocation eased somewhat but did not go away.

05:51

From that day on, breathing became an exhausting task. She kept making strange noises, started purring and grunting. Breathing became a laborious task. She was always making strange, gurgling noises and her lips were turning purple from choking. Sun Sulin said that the air she breathed in was dry and cold, like a knife stabbing straight into the deepest part of her nasal cavity and shooting out into her head.

06:12

Headache, dizziness, insomnia and pneumonia appeared. People around her noticed that this normally fair-skinned Southern woman now had pores that turned faintly black. Her husband, Lao Tao, who was often on business trips, came home and found it strange that his wife always wore a mask and her voice had become weak. Later, Sun Sulin was diagnosed with: Empty Nose Syndrome in several hospitals.

06:35

According to media reports, the official name for the condition is Empty Nose Syndrome. It is an English name and abbreviated ENS. The condition was first discovered in 1945 by an American doctor named Kern... Dr. Tian Xingde of Jingzhou First People's Hospital has observed that the most common symptoms of Empty Nose Syndrome include paradoxical nasal obstruction, difficulty breathing, dry nasal mucosa, impaired sense of smell, and depression.

07:09

What exactly causes Empty Nose Syndrome? From the currently collected patient data and physician feedback, it appears that almost all patients with Empty Nose Syndrome developed the condition after undergoing surgery of the nasal turbinates. So what role do these organs play in our breathing?

This program will soon continue to discuss the breathing pain experienced by patients with Empty Nose Syndrome....

07:28

If we compare the human nasal cavity with an instrument, the producer must have deep understanding in beauty and design. Breathing, this seemingly simple act, is actually performed by a series of intricate parts working in perfect coordination in a predetermined program. According to relevant data, panting is repeated 10 times per minute by a quiet office worker, while a running athlete breathes more than 30 times per minute.

07:51

One of the parts involved is the Mussels. These bulging structures on the side walls of the nasal cavity, wrapped in mucous membranes, play a very important role. Professor Han Deming, an academician of the Chinese Academy of Engineering and an ENT specialist at Tongren Hospital, explained that a normal nose has three turbinates: the upper, middle and lower turbinates.

08:09

The lower turbinate helps to form the narrowest and softest passage in the nasal cavity. Here the air has the maximum contact surface with the nasal mucosa, which heats, humidifies and filters the air. To accomplish this, the air must meet some resistance after entering the nasal cavity. The narrow passage provided by the turbinates offers about half of this resistance which must be balanced with the power of the lungs.

08:29

When air enters the nasal cavity, the lungs need to expand to draw in the valuable air and this is facilitated by the resistance of the nose. If any part does not work, the function of the whole system will be affected.... Recalling the operation from two years ago, Sun Sulin's fellow patient Cheng Shunuo choked several times. Two years ago, at the age of 25, Cheng Shunuo from Hubei underwent a botched operation on his nasal turbinates at a hospital in Wuhan to treat rhinitis.

09:24

Afterwards, he was diagnosed with Empty Nose Syndrome, the same condition that afflicted Sun Sulin. He suffered from a feeling of suffocation, weakness, insomnia, headache. This young man, in his early twenties, appeared exhausted and was already losing his hair. During the interview with the reporter, he often paused to take deep breaths... In order to maintain his image, he often went outside during the interview and leaned against the wall and made hissing noises similar to those Sun Sulin makes.

09:49

Wang Taili, a member of the famous group Chopsticks Brothers, is also a patient that Sun Sulin knows. He also suffers from Empty Nose Syndrome. In a media interview, he said that he underwent an operation to achieve nasal resonance for singing and that half of his lower turbinates were then cut off by a local doctor. This led to excessive ventilation and a constant feeling of dryness.

10:08 a.m

He paid a high price for an unattainable dream. When faced with an illness, celebrities do no better than ordinary people. Wang Taili told Sun Sulin that he had to tape one nostril to sleep. Otherwise he felt cold and dry air. He also tried treatments from several doctors, both domestic and international, with little or no success.

10:23

The inferior nasal turbinate reduction that Wang Taili underwent and the radiofrequency treatment that Cheng Shunuo had are both common procedures among patients with Empty Nose Syndrome. Many underwent just these types of surgeries before developing the condition. Dr. Das Subinoy, an American doctor dedicated to "researching" Empty Nose Syndrome, said in an email to Beijing News that almost all patients developed the condition due to previously performed surgery on the nasal turbinates.

10:43 am

Han Deming, an academician of the Chinese Academy and an ENT specialist at Tongren Hospital, explained that the turbinates and their mucous membranes are fundamental structures in the nasal cavity. They support nasal breathing, resonance, heating and filtration, provide sensations of air pressure and air temperature, and allow us to smell.

10:56 a.m

Regarding surgery for nasal congestion, Han Deming used an analogy: How we treat inflammation in the nose is like the situation in Shanghai with the Yangtze River. Treating the environment in Shanghai without addressing the pollution in the Yangtze River is like putting the cart before the horse. Breathing, resonance, heating, filtering, provides sensations of air flow, air pressure, cold and heat, and allows us to smell.

11:13

Han Deming explained that when the lower turbinates are damaged, the normally narrow and narrow airways become wider and nasal resistance is significantly reduced.

11:35

The ability of the lungs to expand is weakened and the decline in respiratory function can lead to a feeling of pressure on the chest and even suffocation. Low temperature, cryotherapy and plasma reduction of the turbinates are all operations that destroy the mucous membrane. The nasal mucosa is rich in nerve endings and can sense air flow.

11:51

Once damaged, you can no longer feel the airflow leading to a sensation similar to nasal congestion. Without the nasal mucosa, air cannot be heated and humidified sufficiently, which means that the air entering the nasal cavity feels very dry and cold. This irritates the nerve endings in the nasal cavity and causes headaches.

12:07 p.m

In addition, the air now lacks effective cleaning and filtration and now carries bacteria into the lungs, which can lead to lung infections... Many patients suffering from Empty nose syndrome are only understood by other affected patients. Outsiders cannot understand why they seem normal, but suffer so much. Within the medical community, there are differing opinions on Empty Nose Syndrome.

12:27 p.m

Many ENT doctors believe that the breathing problems ENS patients have is closely related to the patient's psychology. For over two years, Sun Sulin's breathing problems have increasingly limited her as a person. She says she can't die, but she can't live well either.

12:45 p.m

Previously, her mother and husband had to sleep on either side of her in the same bed, pinning her in the middle to prevent her sneaking into the kitchen at night to find a knife to end it all. This type of suffering can only be understood by Empty Nose Syndrome patients. Once she took many sleeping pills to end it, but her family intervened.

13:10

She constantly used things to pierce her throat and used other self-harming behaviors, and her family had to keep an eye open When her nose was first injured, she lost 14 kg in 20 days, and she could only sleep 10 minutes a day. And she couldn't even get out of bed. She also had nightmares and crawled out of bed to get up.

13:27

Every night she lived like this and tried to commit suicide twice. My mother saved me. Others do not understand your pain. Even when you tell your parents they say they know you had surgery but even after so many surgeries you are still not better. Who can you blame for that? Saying this to me, hearing these words makes me even more depressed.

13:46

Only fellow patients with the same condition can understand. Only we understand this disease, we comfort each other in online forums. When I really want to end my life, they tell me to wait. To try more treatment first. If they feel that way, I comfort them, we support each other. Because no one else understands, others don't understand your pain They know you are sad, but they don't know how much you suffer from physical and mental pain.

14:11

The situation is very bad for Empty Nose Syndrome patients, some say they would exchange an arm or a leg for a healthy nose. Losing a limb gives sympathy but for us there is no sympathy. In a 2013 Tencent video, a patient says he searched everywhere for a cure. When he found one, there was a risk that it could cause cancer. Then he said: Cancer, so what? As long as it cures my nose! So I think this condition is worse than cancer. Not being able to breathe, I'd rather have cancer! Patients with Empty Nose Syndrome are not understood.

2:33 p.m

A doctor once told a 25-year-old man from Hubei "You should see a psychiatrist, stop thinking about your nose" What hurt him the most was his mother's attitude. His parents divorced when he was young, and he lived with his mother. To support himself, he worked as a cleaner. After he got sick, he couldn't work. His mother was very angry about this and said he was lazy.

14:45

She forced him to get a job. Later he took advice from other patients moved to Hainan where the warm and humid air helped. He could not do heavy work, but could make a living. American doctor Das Subino said in an email that the first challenge for patients with Empty nose syndrome is getting the diagnosis because tests can come back normal.

15:51

More than one ENS patient has said that their local hospital was not familiar with this condition. The doctor could not understand why patients with wide nasal passages would experience a subjective feeling of difficulty breathing... When almost all indicators are normal, doctors believe that the patient has a mental problem.

16:12

At another hospital they said "Go to a psychiatrist, it's a neurological issue. You have good airflow. It looks like your nasal passage is quite wide. The doctor said that such wide passages shouldn't have any airflow problems. Go to a neurologist. They suspect that you have mental problems. In the medical community, there are different opinions about Empty Nose Syndrome. Several ENT doctors interviewed believe that the condition is closely related to the patient's mental state.

4:33 p.m

Zhou Bing, head of ENT at Beijing Tongren Hospital has analyzed patients he diagnosed with Empty Nose Syndrome. He found that these patients' turbinates appeared normal in shape and they had two turbinates that had never been operated on. He said all of these patients had undergone psychological evaluation before surgery.

16:58

There is a gap in understanding. Patients show varying levels of anxiety, depression and other psychological symptoms. Doctors at Beijing Anzheng Hospital understand the suffering of Empty Nose Syndrome patients. He believes that the problem is not only due to damage to the mucous membrane of the turbinates, but generally to the mucous membrane of the nose.

17:12

Some believe that it is the subjective feelings of some patients that are magnified but from the perspective of the patients, they feel a deep pain. However, the doctors make their own assessment and there is a gap in understanding between the two. This contradiction has given rise to confusion.

17:29

Although the medical community has clearly linked this symptom to surgery, there is a significant imbalance in the development of rhinology in different regions of China. But is surgery really the only treatment required for nasal congestion? Different hospitals have different options... The paper then goes on to highlight breathing pains in patients with Empty Nose Syndrome.

17:48

The doctors at the First People's Hospital in Jingzhou City, Hubei, cannot explain why some patients develop Empty Nose Syndrome after resection of the inferior turbinates while others do not. However, the pain of breathing in this condition is real. Doctor Tian Xingde of the First People's Hospital in Jingzhou City, Hubei, wrote in a research paper that he cannot explain why some patients develop Empty Nose Syndrome while others do not.

18:09

This is a confusion for most doctors today. But what he is sure of is that around 20% of patients will develop Empty nose syndrome after surgery on the lower turbinates. Professor Han Deming of the Chinese Academy of Engineering said that this figure could be even higher and that sometimes these operations are unnecessary.

18:23

Dr. Han Deming once wrote that the development of rhinology varies greatly between different regions of China. There is a lack of understanding and there is blind obedience in clinical practice. There is also a lack of understanding in clinical practice. He wrote, “Physicians who blindly perform surgery injure these structures (the turbinates) through ignorance.

18:51

Patients feel nasal congestion and doctors blindly cut off the turbinates. They are then left with an empty nasal feeling. Han Deming believes that the guideline for surgery should always be to preserve the basic structure of the turbinates.

Xiaopan went to a hospital because of sinus problems. The doctor said a minor operation was needed. After returning home, Xiaopan was contacted by the hospital to undergo surgery. When the surgery was done, he got Empty Nose Syndrome. During the interview, Xiaopan's nose was stuffed with cotton and his voice was weak, as if he was forcing his throat to speak.

19:27

Doctors from another hospital later examined his nose and said that this operation should not have been performed at all. In fact, many doctors currently urge caution when using surgery to reduce the turbinates, given its importance.

19:37

When interviewed, a doctor from a clinic in Beijing with a high-class positioning said that their clinic does not perform such destructive operations because they damage the physiological structure of the nasal cavity, although a short-term improvement can be achieved, the long-term consequences can be serious.

19:51

Han Deming said that Beijing Tongren Hospital has long since stopped performing destructive operations to reduce the turbinates.

20:03

He has personally repeatedly called for caution in such operations in various academic texts, but the situation in some small and medium-sized hospitals and private hospitals may be too optimistic. Chongqing Medical University and Affiliated Physician Yongchuan of the Department of Otolaryngology. Considers that for all diseases of the nasal cavity, the operation should be standardized where conservative treatment methods should first be used before the operation. The doctor at the hospital's otolaryngology department also believes that for all nasal conditions there should be one

20:20

conservative standard treatment that must first be undergone before resorting to surgery. And that surgery should only be considered when conservative treatment proves ineffective. Surgeons should also avoid unnecessary overexpansion of the nasal cavity during surgical procedures. ENT professionals should approach septal resection with caution and avoid excessive surgical intervention.

20:40

Experts say removal of nasal septal tissue should only be done in cases of severe trauma, bone exposure or tumor. But in reality, whether or not this surgery is performed differs between hospitals, methods of surgery also differ, and patients are offered different choices. Last winter, a Beijing News journalist visited an exclusive ear, nose and throat clinic in Beijing and interviewed a doctor named Liu.

21:01

He stated that their clinic does not perform destructive surgeries such as nasal septoplasty because it disrupts the physiological structure of the nasal cavity, although short-term improvements can be achieved, the long-term consequences can be severe. However, we had a journalist check out a private ear, nose and throat clinic in southeast Beijing, and here a female doctor suggested performing surgery on hypertrophic turbinates to improve symptoms of nasal congestion.

21:24

The cost of the operation of the turbinates would be RMB 20,000. Elsewhere, a "minimally invasive" approach was suggested even for our 70-year-old journalist. In response to concerns raised by the journalist about Empty Nose Syndrome, the doctor's response was: “You could be hit by a car.

When the journalist mentioned that he needed to consider whether or not to have surgery, the doctor quickly handed over a business card and suggested that he come directly to him in his adjacent consulting room, without even making an appointment. Yet another doctor at another clinic offered a similar treatment plan.

21:50

The medical community's understanding of this condition remains patchy... So for patients with Empty Nose Syndrome. How is there any hope for a cure? Considering the state of medical knowledge, the battle between Sun Sulin and Empty Nose Syndrome has been going on for over two years.

22:29

Almost every possible treatment plan has been tried. She has also written emails to the government of China, Taiwan, Japan, Germany, the United States and other research institutions. She has visited many experts in person but to no avail. Last August, Sun Sulin went to the United States for treatment, but it was still ineffective. For Sun Sulin, part of her nostrils are permanently lost, repairing it is not an easy task.

22:51

Theoretically, part of the turbinate on the opposite side can be removed and then implanted on the injured side, but whether the operated turbinate can survive, and to what extent, is unknown.

23:09

This is easy to say, but hard to do. So he suggests training is needed so doctors don't damage the structure. It is not entirely without hope. The Anthony Atala Research Institute at Wake Forest University in the United States told Sun Sulin that there is hope for successful research to cure Empty Nose Syndrome. however, the cost is staggering.

23:26

The first phase of animal testing costs about $500,000. Subsequent human experiments require about $800,000. Dr. Chang Shunuo, who has long studied Empty Nose Syndrome, wrote in an email, "The condition is difficult to cure. Currently available treatment methods are limited. He is currently researching a new treatment method, but it is still experimental.

23:42

Professor Han Deming's team is doing meaningful work, namely clinical observation and establishing a standardized diagnosis and treatment model across the country to prevent surgery from being abused. He believes that surgery of the turbinates will become less and less common. Professor further says that this generation is responsible for solving the problem of Empty Nose Syndrome. Instead, Han believes that drug treatment is expected to increase, which will reduce the number of operations performed on the nasal turbinates.

24:18

According to Professor Han, this trend suggests that the problem of Em,pty Nose Syndrome may soon become a thing of the past. The responsibility lies with this generation until a solution comes. Meanwhile, patients continue to struggle to breathe deeply. Cheng Shunuo now uses invisible nose plugs that she imported from the United States, these cost more than forty yuan.

24:44

They are small, with two silicone discs with a sponge filter in between. Each less than a centimeter in diameter, they are inserted into the nose to relieve excessively wide nasal passages due to the removal of the turbinates, creating a narrower airway. Some continue to wait while others have taken action. When Sun Sulin's appeal for help was posted on Tianya, it attracted a lot of attention.

25:06

Sun Sulin continues to be followed by many patients hoping to gain useful insights from her medical journey. Every day she receives letters filled with fear, anxiety, hope and despair from all over the world. In the midst of uncertainty, Sun Sulin remains a beacon of hope for those who are suffering. During the interview, her husband, Lao Tao, told a story from ten years ago.

25:26

Sun Sulin was sent by the company to a chemical factory in Shanghai to manage the construction of the new premises. Suddenly there was an explosion, and there was chaos with fire everywhere, things falling from the sky. Everyone ran out, but she took her safety helmet and ran into the factory. She wanted to see if their construction had caused it. Lao Tao said that his wife is such a brave person, so the pain she is enduring must be real. As her husband, he must accompany her through everything.

25:48

Listening friends, what you just heard is a selected reading from Beijing times magazine: and the article "The Pain of Breathing for Empty Nose Syndrome Patients." My name is Song Yu and I thank you for listening to today's program. This excerpt is from New Jingbao's "First-Person" program.

26:08

You can follow the public WeChat account of the magazine's featured reads. Taken from Xinjingbao "First-Person" program rebroadcast. Our WeChat ID is "baokanxuandu" Alternatively, log in to the Zanlanjin app Or listen to Himalaya FM. See you next time in the program!

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