Andrew & Empty Nose Syndrome
Hello and welcome to our page.
My husband Andrew has a rare and disabling iatrogenic disorder called ENS, or Empty Nose Syndrome. ENS refers to the fact that a patient's CT scan looks empty, or devoid of normal tissue, following nasal surgery, specifically turbinate excision. Andrew has ENS & nerve damage in his nose from the same turbinate reduction surgery that he received in May 2014.
Treatments have not yet been approved by the FDA and are still considered to be experimental. There are no payment plan options available and everything is paid for upfront and on a debit/credit card or in cash. Platelet Rich Plasma Stem Cell injections cost $1985 and Adipose Stem Cell Injections cost $2,500 each. However, our goal is for him to receive implant surgery as he still has some of his turbinates left. This surgery costs between $15,000 to $60,000 - we will get a better estimate once we send in his medical information & pay money for a phone consultation. There are very few specialists in the world who treat ENS. The specialist that we are hoping to see is located in California state.
Being that the Adipose Stem Cell Injections did not increase his quality of life in the slightest, we feel that this is not the most efficient or effective style of treatment for him.
I have tried to get in contact with other patient programs that offer assistance to people with rare diseases but ENS isn't even listed in their guidelines because it is so rare.
In July of 2017, Andrew and other ENS patients officially created the ENS Awareness ribbon and month. The ribbon is sky blue and the official ENS awareness month is June. 
^ This exact design was created by ENSIA.
ANDREW'S STORY
In May of 2014, Andrew had a turbinate reduction surgery done on his nose to shrink his turbinates. The doctor told us that it would be a quick procedure done in his office. We were just told that it would take several months to heal and that his nose would bleed and be a bit sore afterwards. He did not warn Andrew about the possible risks of ENS or nerve damage.
Sure enough Andrew's nose bled, alot. So much that he used up a few boxes of tissues within the first few days. Then came the many serious and life changing side effects, including ENS & permanent nerve damage in my husbands nose. Months passed, then years, and his symptoms only got worse.
We knew something was seriously wrong but didn't know what. Since May 2014, Andrew saw around 10 different specialists including various Allergists, ENTs, Speech Therapists, GI's, and Pulmonologists, a Pulmonology Therapist, etc. It was money, time, and energy wasted and alot of hope was lost during this process.
Andrew typed a two page report of his symptoms, treatments that he has tried, home remedies, etc and all of the offices still asked him the same 100 questions that they always ask. They didn't bother to read it - even though all of their answers were already listed on paper! As always, they offered the exact same cookie cutter treatments along with the most basic advice such as "use an over the counter nasal spray," "try to relax," or "go see a psychiatrist." They also seemed to hand over the responsibility by recommending us to someone else. Nobody cared to dig deeper and figure out what was actually happening. Everyone wanted a quick & easy pay check.
Side note: We have noticed that most doctors tend to treat the symptoms and not the underlying condition. This lead to more medical bills and pushed us further away from receiving a credible diagnoses.
*** It wasn't until Andrew researched his symptoms online and found the term Empty Nose Syndrome or "ENS." So, we made an appointment with Dr. Stella Lee in Pittsburgh PA about two months ago. It was at this time that she confirmed the diagnoses of ENS along with nerve damage in his nose. Dr. Lee said this was caused by the turbinate reduction surgery in 2014. The specialist basically botched the surgery and caused permanent damage. Even though she confirmed the diagnoses, she does not offer treatment at her office. ***
Here are just a few of his symptoms and side effects to the turbinate reduction surgery:
Constant feeling of suffocation 24/7
Severe Insomnia - he often times stays awake for 24 hours because of the suffocation issue
Nasal - Chronic nasal dryness, difficulty breathing, near constant post nasal drip, sensitivity to enviromental triggers, difficulty processing mucus, intermittent sneezing spells
Throat - Vocal cord dysfunction, constant feeling of suffocation, occasional & very painful mouth ulcers, sore throats, always clearing his throat
GI - LPR (silent reflux) & bloating
Physical - sleep deprivation (0 to 4 hours of sleep every night), it takes 4-6 hours for him to fall asleep, stunted sleep cycle, chronic fatigue and exhaustion - Check out Prince's Story AND MJ's Story
Psychological - difficulty concentrating and thinking critically or creatively, difficulty finding words and phrases, shrunken vocabulary skills, inability to relax, severe depression, etc.
For more information, please check out the following links:
ABC Health & Wellbeing Article
ENS International Association
Buzzfeed Article
#MedicareForALL
#HoldDoctorsAccountable
