July 2009


The right side of my face has caved in slightly, and my right eye droops, most obviously in the mornings. I asked a plastic surgeon if this caving will continue. “I don’t know,” she said.


My nose and eyes are miserably dry. When I wake in the morning, I feel like I have two hot pokers shoved up my nostrils. This, I have been told, is the feeling of the nerves dying off, as turbinate tissue atrophies. My eyes are glued shot by pus. I feel too exhausted to get up and start relieving the distress. I know the routine will take hours. Welcome to a new day.


When I do get up and look in the mirror, I see a ruined face—swellings and wrinkles, a drooping eye and a disfigured nose. I have just received a diagnosis of osteoarthritis, in my hips. I cannot breathe well enough to get through a technical support phone call to solve a computer glitch. Formerly, I worked in customer service. I spend hours daily ministering to the needs of this iatrogenic (medically-caused) incurable condition. I have spent thousands of dollars on products, many of them worthless.


Every day, I wonder that a doctor can do this much harm, and there can be nothing I can do about it. Not only can I do nothing about it, but I am the villain. Terrible me to say that I am suffering! How dare I suggest that a doctor harmed me!


All of this suffering and loss was caused by a doctor. Other doctors, to whom I have turned for help, have added to my suffering. Still others have done nothing to help. What I have learned about the medical profession is horrifying. A fellow ENS sufferer asked me recently, “How long until this house of cards falls?”


7 Responses to “Fallout”

  1. I am a ENS to since 2008. I had my tubinate reduction on the both side of my nose whitch the ENT removed 2/3 of my tissue. I have been battlelling ever since and It become worse and worse with time and get any help from any doctors… they provided me treatment that take hours and hours every day!
    I become so extremely tired too quickly than I hardly do just a couple things in my day. I intend to come back to school in October but I am hopeless about It as my asthma problem become worse and worse too. I go through my day with very difficulties and I don’t even work or study yet…. I am desperate but I still, don’t give up… I am with you all ENS fellows and we will be fighting together to find tips to get better!

  2. what has happened to you is awful. Your story shows how cruel, uncaring and protective the medical community can be and it is all because of the almighty dollar. I too have ENS, I work in the medical field and next to your story I have been very, very lucky. My sinus surgery was done in the ’90s and I am actually one of the first ENS cases recognized in my state. I do not blame my surgeon since at the time he and I thought that what he was doing was saving my life. I had repeated serious infections and the only way they would clear was to remove the tissue. My surgeon was very careful and removed the least amount of tissue. Unfortunately 4 operations later and the turbinates were gone. When I started to develop ENS symptoms, mainly chronic facial pain and crusting, he looked into chronic pain options and made sure I was taken care of.

    Ten years after my inital surgery we moved to the other side of the state. The first ENT I saw sounded like some of the ones that you had seen. He inisisted that I had vascular headaches and referred me to a neurologist. At the time my husband was an OR scrub tech and spoke with that guys new associate and he agreed to see me. He has been great and helps me deal with the ENS. He explains it this way “There are areas of the inside of my skull that where never meant to be open to the outside air and are.” Over the last 9 years we have tried some things that work and some that do not. I still get frustrated especially when I have an infection with crusts I cannot get out but,,,,,,,, I cannot see me having any more surgery no matter what it is.

    • Ellen, thank you for sharing. The scope of this problem is staggering. There are so many of our voices. I hope and pray we will soon be heard.

  3. Glad you took the time to right this story. You are very articulate.These ents will get to there end of there mortal life one day, and if they dont repent they will pay. Hang in there. I suffer from an ent as well.

    • Fightback,

      I think about that, too. The suffering these ENT’s create is so horrific. It’s torture. Worse because no recovery is possible. I am amazed at the inhumanity that allows them to do these surgeries in bulk and then “manage” the ENS cases by belittling them and writing false reports. They may have the system in hand here, but this life is short.

      You hang in there, too.


  4. Thank you for your story. I too have battled with empty nose syndrome ever since a botched surgery. In January, it will have been three years. As recently as last month, I ideated suicide. But then, as always, I reminded myself that I would rather go through life as a cripple–and wring from it whatever drops of beauty remain–than give up. Good luck on your journey; I know it’s not the one that you (or I) had in mind.

    • Amanda, That is so beautifully put. Thank you for sharing your strength and wisdom. I wish you all the drops of beauty you so richly deserve. K

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