ENSIA received a message from Stanford University scientists, and we are happy to share it with the ENS community:
Dear ENS community,We would like to thank you all for your generous support of our research. Your kind participation in our Stanford-affiliated research survey via the ENSIA website, online ENS forums and other social media avenues allowed us to capture one of the largest samples of ENS sufferers ever studied.These findings were presented to an audience of ENT surgeons from around the world at the annual American Rhinologic Society Meeting in Chicago last year.One component of this study, “The Functional and Psychological Burden of Empty Nose Syndrome”, has now been published in a peer-reviewed ENT journal called International Forum of Allergy and Rhinology. (https://onlinelibrary.wiley.com/doi/10.1002/alr.22097)Please also find a link to a podcast where we discuss the findings of this paper as well as the future of ENS research with Dr. Timothy Smith.http://www.scopeitoutpodcast.com/podcast/episode-21-functional-psychological-burden-empty-nose-syndrome-guest-dr-andrew-thamboo/?elq_mid=26205&elq_cid=8136753With your ongoing support, we hope to use research to better understand ENS pathophysiology, to determine best practices to manage ENS symptoms, and to advocate for ENS.Thank you again for you time.
Yours Sincerely,Drs. Andrew Thamboo and Jayakar Nayak
Texas Mother Suffers from Rare Empty Nose Syndrome: It’s ‘As If Your Lungs Aren’t Big Enough To Fit a Breath of Air’ (People Magazine)
A recent article about ENS was published in People magazine: Texas Mother Suffers from Rare Empty Nose Syndrome: It’s ‘As If Your Lungs Aren’t Big Enough To Fit a Breath of Air’ .
This article featured Heather Schwan who had a balloon sinuplasty, a septoplasty and a turbinate reduction, and soon afterward started experiencing a sensation of suffocation.
Rhinologist Dr. Subinoy Das was interviewed for the article and explained that ENS is caused by damage to the nasal turbinates, saying that he estimates it is a complication occurring in 1 in 1000 turbinate surgeries.
The new ENS outcome Questionnaire, the ENS6Q, developed at Stanford University with Dr. Jayakar Nayak is one diagnostic “breakthrough” discussed in the article. Another “breakthrough” noted is the research from Ohio State University showing distorted nasal airflow and damage to turbinate nerves.
Heather saw some improvement following treatment with Dr. Das and no longer feels as though she is suffocating all the time, although she still thinks about breathing.
People Magazine is a weekly magazine with content focused on celebrity and human interest stories. It has one of the largest readerships in the USA, with 76 million consumers. It has both a print and online presence.
Click here to read full article.
Click here to watch video.
On March 27, 2018, a new interview about ENS got released!
In this episode, Dr. Smith and Dr. Andrew Thamboo (Stanford) discuss the article “The Functional and Psychological Burden of Empty Nose Syndrome”.
The main conclusion of the article:
ENS individuals carry a clinically significant psychological burden and experience marked difficulties with many activities of daily living. A multimodal approach to address the tissue loss with surgery and cognitive‐behavioral therapy for the psychological burden may provide the most optimal outcome.
The article was presented at the Annual Meeting of the ARS, on September 9, 2017, in Chicago, IL.
Subinoy Das, MD, FACS, FARS, Chief Executive Officer and Interim Medical Director for the U.S. Institute for Advanced Sinus Care and Research recently posted an update for their ongoing efforts on the treatment of Empty Nose Syndrome. In the update, Dr. Das discussed the variety of services offered for patients with ENS and other nasal/sinus related disorders. As of September 17th, 2017, 392 patients have been treated for ENS with PRP/Acell Injections; 52 adipose-derived autologous fat transfers have been performed; Alloderm implants are offered again. They are now soaked with PRP/Acell/Adipose-derived stromal vascular fraction.
On the subject of new therapies, Dr. Das stated that there are several advances in stem cell and regenerative therapy for the nose, but these are several years from becoming clinically available. He noted they will consider participating in clinical trials when the new therapies are being tested for FDA approval in the United States.
- Link to Dr. Das September 2017 update: https://www.tapatalk.com/groups/guestfr/september-2017-update-on-ens-from-the-us-institute-t6152.html
- Link to all the previous Dr. Das updates: http://ensassociation.org/wp-
ENSIA is very pleased to announce that the first version of the ENS Treatment Testimony Form is now available online! Seeking medical care for ENS can be confusing, expensive, with no guarantee of results. Consequently, this is an excellent opportunity to make your voice heard and share your experiences in treating your ENS – be it positive, negative, and otherwise – and to gain greater insights into ENS treatments in the process.
The benefits of this form is that testimonials:
- follow a single (unified) format
- use the same (identical) assessment criteria – which allows to reduce bias and facilitate the comparability of results
- take into account the context and individual features of each ENS case (e.g. type and extent of damage, location, previous treatments, etc.) – factors affecting the outcome of treatment
- patients share their testimonials anonymously and freely – without fear of censorship or reprisal
The completed testimony forms shall be published in the ENSIA members’ zone, to which ENSIA members will have access to view.
- Any harassment or attacking of doctors shall be prohibited, as the purpose of these forms is only to evaluate treatment options, not the doctors who are trying to help us.
- These forms do not represent a scientific consensus or opinion in any way, and ENSIA does not hold responsibility for the information provided by participants, (including provision of false information, attempts to manipulate the results, etc.).
We strongly encourage you to acknowledge the extent of your personal responsibility before other ENS patients and share your testimony honestly and truly.
You can find and download the testimonial form on ENSIA’s web page at: http://ensassociation.org/
NB: Before completing the forms, you are urged to read the four-step Instructions, which will save yourself much time and energy, and make the process of completing these forms quick and easy.
ENS has enjoyed a surge of three new mainstream websites publishing articles on empty nose syndrome in the month of August:
- Medical News Today: http://www.medicalnewstoday.com/articles/318813.php
- Healthline: http://www.healthline.com/health/empty-nose-syndrome#outlook7
- Sixth Tone: http://www.sixthtone.com/news/1000640/the-invisible-pain-of-empty-nose-syndrome
The Medical News Today article offers a succinct, scientific overview of ENS and it is broken into Causes, Symptoms, ENS and Turbinate Surgery, Diagnosis, Treatment, and Outlook. The Healthline article offers a similar succinct, scientific format, but is a bit more conversational and it includes increased context to ENS, such as briefly discussing its history. This article is broken up into Symptoms, Causes, Condition History, Diagnosis, Treatment, and Outlook. Both of these articles do a nice job of summarizing ENS. The Healthline article also referred its readers to the Empty Nose Syndrome International Association (ENSIA) website.
The Sixth Tone article entitled, The Invisible Pain of Empty Nose Syndrome, highlights the story of ENS sufferer from China, Sun Sulin, while also providing quotes from leaders in the field. Sun’s story started as a project manager at a chemical engineering institute to being totally crippled by ENS after her 2013 turbinate reduction surgery, including most significantly a profound sense of suffocation. According to the article, Sun had part of her inferior turbinates removed without her knowledge. This article goes on to highlight the challenges in seeking help and recognition from both family members and the medical profession, as well as the devastating impact ENS can have on one’s life. We at ENSIA are very proud of Sun for bravely sharing her story, which was a powerful news story and will no doubt be used to help others and create further awareness for ENS. Thanks are also in order to our ENS-knowledgeable physicians, Dr. Subinoy Das as well as Dr. Jayakar Nayak, who contributed to this article by sharing valuable context, which greatly enhanced the final product. For further information on Sun’s story, you are encouraged to watch the following video: https://www.youtube.com/watch?v=T6nB0gQ7tDY.
Some key, direct quotes from The Invisible Pain of Empty Nose Syndrome include (with bold and underlining for emphasis):
Sometimes I just want to grab a knife and slash my throat to feel the air again. – Sun Sulin.
“Turbinates are critical for survival,” Dr. Subinoy Das, medical director of the U.S. Institute for Advanced Sinus Care and Research, told Sixth Tone in an email.
Jayakar Nayak, an assistant professor of otolaryngology at Stanford University School of Medicine, developed the first six-item questionnaire to help diagnose ENS, though it is not widely used in China. According to Nayak, when ENS sufferers experience psychological symptoms, they are typically a secondary result of the physical nasal issues, importantly clarifying the cause-and-effect pathophysiology of ENS.
Han Demin, a leading ear, nose, and throat (ENT) doctor at Beijing Tongren Hospital, estimated that around 20 percent of patients who receive turbinate reduction surgery in China experience ENS after the procedure.
ENS Awareness Month & Day:
In February, ENS patients voted June as the official Empty Nose Syndrome Awareness month and June 10th as the official ENS Awareness day:
ENS Awareness Month: June
ENS Awareness Day: June 10
Sky blue was the color chosen for the ENS ribbon, symbolizing air and breathing.
We would like to thank Bethany D’Amico for her initiative and for her work organizing the selection of ENS Awareness month, day, and the ribbon color. It would be appreciated if you could express your gratitude to Bethany by making a donation to her husband’s ENS treatment fundraiser: https://www.gofundme.com/andrewstemcell.
Anyone with an ENS awareness initiative is welcome to contact ENSIA at firstname.lastname@example.org. Examples of possible awareness initiatives may include: marathons for ENS awareness, biking competitions for ENS awareness, distribution of flyers about ENS (being developed by ENSIA at the moment), ENS awareness public events, awareness & testimony videos – pretty much anything! Volunteers are always needed! ENSIA will be happy to provide financial support for interesting and viable initiatives. ENS awareness can (and should) be raised all year round!
Please share ENS awareness ribbons and pictures on social media (e.g. Facebook, Twitter) as much as you can – and have your family members and friends share too!
The ENS Awareness song will be ready soon! And we will be adding more ENS Awareness materials to share.
ENS Awareness Profile Photo:
If you would like to add one of the below-portrayed ENS Awareness ribbons to your social media network profile photo, do not hesitate to send request to email@example.com specifying which Type of the ribbon (Type 1 or Type 2) you would like to add. Do not forget to attach your profile photo. ENSIA will integrate the two and send the photo back to you!
Example: Type 1 or Type 2
ENS Awareness Ribbon (click on the image to enlarge and save):
ENS Awareness Pictures (click on the image to enlarge and save):
Steven Houser, M.D. is featured in an April Cleveland Magazine article, “Cleveland Cures”, which examines nine ways Cleveland offers the best medical care in the United States. Dr. Houser is associate professor of otolaryngology at Case Western Reserve University and director of rhinology, allergy and sinus at Metro Health Medical Center, and is one of the few ENTs in the United States to treat Empty Nose Syndrome (ENS).
Dr. Houser’s innovative treatment for ENS is discussed as # 4 of the 9 ways Cleveland offers the best medical care in the U.S, in the section, “Knowing the Nose”.
Tracing Dr. Houser’s early interest in ENS as a third-year resident at Cleveland Clinic, the article describes the way in which implantation of cadaver dermis in the nasal turbinates can help improve ENS symptoms, such as nasal airflow sensation. Dr. Houser’s treatment focuses on improving nasal sensation and breathing in patients who experience paradoxical obstruction, a central feature of ENS. According to the article, Dr. Houser believes that ENS occurs from poor healing that can take place following surgery to reduce the nasal turbinates, where nerves fail to regenerate. Patients report a 40 to 80 % improvement following treatment with Dr. Houser. Patients from all around the world come to Cleveland to see Dr. Houser.
You can read the full article HERE.
NasalCripple.com is a new Empty Nose Syndrome web resource created by James Skinner who is an ENS sufferer. James intends the website to be a comprehensive database of ENS-related content with news stories, journal articles, videos, books, presentations, and more.
ENSIA would like to thank James for taking the initiative to create this website and for his hard work in making it a reality. NasalCripple.com is sure to be a valuable tool for raising ENS awareness as well as a fantastic resource for patients, medical professional and the public.
Click here to visit “Nasal Cripple”.
ENS awareness is furthered through voluntary contributions – so if anyone has ideas, wants to volunteer, or help in any way, they are welcome to contact ENSIA. ENSIA appreciates any offer to contribute and is willing to provide support in whatever way we can.
Computational Fluid Dynamics and Trigeminal Sensory Examinations of Empty Nose Syndrome Patients (Article & Study)
Ohio State University (OSU) released ENS CFD study results and published an article entitled “Computational Fluid Dynamics and Trigeminal Sensory Examinations of Empty Nose Syndrome Patients”. Brief summary of the article:
“This prospective case control study investigated the pathogenesis of ENS, examining changes in nasal aerodynamics and nasal trigeminal sensory function among a small group of ENS patients. The results indicated that a combination of factors may contribute to the development of ENS including: paradoxically distorted nasal aerodynamics, impaired sensorineural sensitivity, and potential predisposing conditions.
Decreased nasal resistance and flowrates were observed in the ENS patients using computational fluid dynamic (CFD) simulations. The results showed significantly increased airway cross-sectional area post-surgery, especially in the inferior region, which paradoxically resulted in significant flow rate reduction. Paradoxically, inferior turbinate (IT) reduction did not draw more airflow to the airway surrounding the IT; rather, there was a reduction of airflow intensity surrounding the IT for all ENS patients.
Altered airflow patterns were also observed. Pre-surgical nasal airflow patterns were evenly distributed throughout the inferior and lateral regions of the nasal airway, while post-surgical nasal airflow patterns showed a reduced airflow intensity surrounding the inferior turbinate. In addition, new airflow patterns were directed toward the middle meatal region in a narrow jet.
ENS patients were found to have significantly lowered menthol lateralization detection thresholds (LDT) in an assessment of nasal trigeminal sensitivity compared to healthy controls. Since nasal trigeminal sensitivity potentially mediates the perception of airflow, this finding confirmed nasal neurosensory impairment among the ENS patients.
An interesting finding of the study demonstrated that symptoms related to ENS did not necessarily result from the most radical resection of turbinate tissue“
Hyperlink to the full article: https://www.ncbi.nlm.nih.gov/pubmed/28278356
Important: the study continues and patients still get enrolled – don’t miss your chance to participate! It will help you understand your ENS case better and also will contribute to better understanding of ENS and its qualitative research. More details can be found at:
Dear ENS patients,
This year is ending, and wonderful winter holidays are awaiting us – Christmas and New Year. It is a very special time: time when we summarize the results of the completed year and make plans and resolutions for the upcoming year; time when we leave old things that do not serve us behind and look forward to start a new year filled with hope and inspiration. Also, it is the time of year filled with miracles and beauty; time when strong universal energies encompass the world and humanity gets united. On this special occasion, ENSIA would like to take advantage of this exceptional time and share a Prayer for ENS patients and their families. There could not be better time than now for such an endeavor!
“Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” (Mark 11.24)
We would like to suggest reading and feeling the following Prayer in your Heart every day 1x or 2x a day starting from today and ending on Dec 31.
Also, since the effect of any Prayer is stronger when several (the more the better) people gather to pray together, we would like to offer reading this Prayer on specifically appointed times to create a powerful egregor and send out a collective intention. The times of collective prayers are:
- December 22 at 2pm (14:00) GMT+0
- December 25 at 2pm (14:00) GMT+0
- December 31 at 2pm (14:00) GMT+0
In order to calculate time at your location, you can use the following GMT calculator: https://greenwichmeantime.com/gmt-converter/.
Important to note:
- You do not have to inform us about your participation. It should be an intimate conversation between you and God/Universe
- Other ENS patients will be praying together with you at the same time at their own geographical locations
- It does not matter whether those who pray are physically together or far apart since we all are connected in Spirit
- Prayer concerns only those ENS patients who willingly participate in it and accept the intended effect
Your participation will help ENT scientists from Stanford assess some of basic physiologic and geographic associations to ENS, and its impact on measurable aspects of quality of life.
Data collected from the research survey will contribute to an upcoming Stanford University study on ENS.
Participants should be between 19-75 years of age; have had sinus surgery, with inferior turbinate resection or reduction; and, be diagnosed with ENS or have symptoms of ENS (for example: nasal burning, nasal openness, and/or paradoxical nasal obstruction).
To participate in the ENS survey, please follow the link: https://goo.gl/forms/DpwruqOU0VsQAAUF2.
For additional questions, please contact ENSIA at firstname.lastname@example.org.
Dear Members of ENSIA and Friends,
We are very pleased to announce that new neuro-mucosal treatment for ENS patients has become available in Germany. The treatment methods are based on scientific evidence & developments done by Prof. Bader – a world-renowned stem cell & regenerative medicine researcher.
The treatment is performed in Acqua Clinic (Germany, Leipzig) by ENS-friendly ENT doctors. Appointment can be made by writing an email to Mrs. Heike Hachmeister at email@example.com.
Video about Acqua Clinic can be viewed here.
Additional information can be acquired by contacting ENSIA’s Secretary at firstname.lastname@example.org – please contact us, and we will send you a brochure with more details.
We wish you all the best and hope that this treatment will help improve your condition.
In Memory of Melisa, Our Daughter, Died May 23, 2015 at the Age of 33 Years
“Melisa was a very sociable and friendly person. She had studied tourism to become a stewardess. She loved to travel and discover other cultures. When traveling, she complained of pain in her ears, which led her to consult our family doctor and an ENT specialist in Quebec who offered her a septoplasty because her nasal septum was deviated.
He never mentioned to Melisa that she would suffer an “intervention on her turbinates.’’ He just told her that he wanted to make more room in her nose so that air would flow more easily. If Melisa had been warned that her turbinates would be operated upon, she would have flatly refused to undergo this mutilation. This operation took place in 2007. When our daughter retrieved her operative report, it mentioned “full and dwindling septorhinoplasty of inferior turbinates, bilateral”.
A few months after the procedure, she was not very well, and developed several symptoms which were first: nasal dryness. To clear secretions, she had had to use constant force that became increasingly long and painful and provoked exhaustion and extreme fatigue. Allergies and asthma attacks followed. In the absence of inferior turbinates, the passage of air was too turbulent, the air was not filtered, warmed or humidified. She also had facial pain in the eyes, ears, throat and recurring headaches. She had pain in the lungs and they felt “frozen”. Melisa drank hot water and ate breadcrumbs to mitigate her chest pain and to have more sodium in the blood. Since 2008, she received allergy injections to offer desensitization.
Obviously, the result was predictable: job loss, poor quality of life, and return to our home. With time, her state and condition of life had gotten progressively worse, so she saw her ENT in September 2013. He found several symptoms that she developed. In October 2013, Melisa was on sick leave of work for empty nose syndrome and was hospitalized urgently in May 2014 for anaphylaxis (severe allergic reaction that can cause death).
In May 2015, our daughter met another ENT and his diagnosis was without a call, stating that Melisa had developed “a total paralysis of the sinus function as tissues and sinuses were dead and there was nothing more to do “. He advised her not to have surgery because her mucosa was severely atrophied. She preferred to know the truth rather than have false hope. She found this otolaryngologist human and listening: he had taken the time to explain things.
Her nose was so dry that it could not assume more normal respiratory functions to such a point that she had to live permanently plugged to an integrated flow humidifier unit received in 2014. Without this machine, our daughter was automatically suffocating as there was too much air coming in, and it was too cold, so her lungs and bronchi where inflamed, causing asthma attacks that could last for hours and hours. She could not live without this machine, or the chest pains were unbearable like if her lungs were in an “ice pack” … horrible! She had been diagnosed empty nose syndrome by this ENT.
Her friend, Carole, suffering from atrophic rhinitis due to a bilateral turbinectomy and cauterization of the inferior turbinates, with whom she communicated and who supported her, asked her what she loved most in life.
Here’s what Melisa replied in writing: “Let’s say that since I am disabled and cloistered at home, plugged to a machine, I try to enjoy the small moments of happiness with my family and I try to find soul peace to be able to leave quietly in a near future …. I do not have any quality of life, therefore I do not even know what I like; I do not know it because I cannot do anything! The disease weakened me to an extreme level! I try to take care to read, listen to music, read newspapers, be aware of news and take relaxing time thinking of nothing. It feels good. “
Shortly before her death, Melisa wrote “I made a prayer. I asked the Lord to give me a place beside him. I know you expect me and my place is already ready in your kingdom. To live in peace and without pain with you, my Lord. I leave you my soul to dance in a new life full of love forever because health is the greatest wealth in the world. Amen. “
We hope that this pathology, empty nose syndrome, will be recognized by the medical profession because we cannot conceive that such an operation could cause so much suffering and cause irreparable loss of our child.
We also insist that our daughter has died following a long illness on May 23, 2015, in our residence and did not commit suicide as other victims of empty nose syndrome have done.
Her parents that will keep forever Melisa in their hearts.”
Marcelle and Jean-Yves Champion, Canada
(translated from French)
Melisa’s VIDEO Testimony can be viewed here: https://www.youtube.com/watch?v=f_yoDPpTEFI
Anyone who is interested in getting a nasal airflow evaluation, can now obtain a FREE evaluation if you participate in the OSU study on Nasal Congestion & Smell Loss. By participating, you will have your airflow evaluated using Computer Fluid Dynamics (CFD) analysis. This could be an important part of your ENS treatment to correct your airflow.
For those who also have smell loss, this is a great opportunity too. Patients do NOT have to have both issues (congestion & smell) in order to participate, so either you have a nasal obstruction or smell loss due to ENS, you are welcome to participate in the study.
IMPORTANT: No need to travel to Ohio! Simply send your CT scans, medical records, & fill out some forms by e-mail. After you contact them, they will provide you with a list of all the necessary documents that need to be filled out and sent to them together with your CT scans.
They need as many ENS patients as possible to participate, since 200 patients are required for the study.
Information about study: http://ent.osu.edu/research/nasal-physiology-lab/index.cfm
For additional questions, please contact ENSIA at email@example.com.