ENS Syndrome: Invisible sufferers

We, the ENS Syndrome community have unfortunately suffered the negative effects of nasal turbinate reduction and related surgeries. On top of this horrific outcome of being diagnosed with ENS, a substantial amount of individuals globally are impacted being left without viable treatments or guidance due to the lack of acknowledgment of this growing syndrome. "Chhabra and Houser, however, estimate a rate of 20% following inferior turbinate resection"-N. Chhabra, S.M. Houser,The diagnosis and management of empty nose syndrome Otolaryngol Clin North Am, 42(2009), pp. 311-330).

This ultimately puts sufferers in a medically unqualified position to treat themselves as turbinates that are no longer functional require regenerative therapies in attempt to restore what has been injured. In addition, since there is no formal treatment protocol for ENS patients, those who suffer desperately attempt experimental therapies  which could further complicate symptoms. Although there are few emerging treatments, they are deemed experimental and unfortunately not insured leading to financial hardship. This causes further decline in overall health and quality of life.

The vast majority who deal with the devastating symptoms of ENS experience severe and chronic symptoms such as lack of airflow communication to the brain; breathlessness, choking sensations, suffocation, lack of airflow resistance, damage to the nasal mucosa, nerve pain, affected speech, sensitivity to humidity and weather changes, autonomic disturbances, sleep deprivation, cognitive decline, and a plethora of symptoms that cause great discomfort and ability to function normally. Recent studies have also shown connections to the limbic system to explain the chronic distress in ens patients. "In addition, there are fibers from the Cranial Fifth Nerve that require activation, and therefore the absence of that pressure is distressing."-Freund W, Wunderlich AP, Stöcker T, Schmitz BL, Scheithauer MO.(Empty nose syndrome: limbic system activation observed by functional magnetic resonance imaging.)

To further understand the importance of these organs, nasal turbinates play a vital role in having the ability to sense airflow in conjunction with keeping the nasal mucosa healthy free of outside toxins, regulating airflow, cleansing the nasal passages through mucus secretion, a long with sending important signals to the brain."Empty Nose Syndrome (ENS) is a devastating problem caused by the over-resection of the inferior turbinates and/or middle turbinates of the nose. The turbinates are structures in the nose that dilate and/or contract to control humidity, temperature, and filter air that is transported to the lungs. Many years ago, radical resection of these structures were performed often in an attempt to improve nasal breathing, allergic rhinitis, or sleep apnea."-Dr. Subinoy Das(USASCR)http://www.usasinus.org/empty-nose-syndrome

"The turbinates also serve a neural function. They direct the flow of air so that it reaches sensors that tells the body that the air is flowing in correctly. With the turbinates absent, there is a significant change in air pressure reaching the sensors. A useful analogy is water from a hose with a nozzle of correct size opening." -https://www.scitemed.com/article/2513/scitemed-aohns-2018-00065

Currently, this syndrome has no formal Icd-10 code or a significant acknowledgment from the medical community. Additionally, only a hand counted amount of Ear, Nose and Throat (ENT) specialists globally, attempt to treat this horrific syndrome. This syndrome entails irreversible damage to the nasal turbinates. Unfortunately, this has resulted in several sufferers attempting or actually taking their lives by suicide. This is primarily due to the extreme severity of symptoms and lack of treatment that accompanies Empty Nose Syndrome."As a result, many patients with ENS suffer the double victimization of having an iatrogenic problem created by over-aggressive surgery and then being told that their symptoms "do not make sense" and can be cured with behavioral therapy."-Dr. Subinoy Das(USASCR)http://www.usasinus.org/empty-nose-syndrome

Our objective is to ultimately have formal medical recognition, further research advancements in treatments, followed by collaborative efforts from ENT,medical,and scientific institutions to give suffers hope of a near future cure. Moreover, the ENS community urges ENT specialists to enact guidelines that require medical management approaches to be tried before proceeding with turbinate surgery, as many health related ailments affect the nasal turbinates.

With your signature and help, we can shed light and hope to an underserved community that constantly feels invisible due to the lack of recognition and understanding in correcting the negative outcome of turbinate and related surgeries. These sensitive organs only come once in a lifetime. A human being should never be in a position to have their basic human right to breathe and function efficiently taken away.

We greatly appreciate your acknowledgment, and many thanks for your support!

With great strength and courage,

The ENS community