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My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby godishope » Sat Jul 28, 2012 10:45 pm

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Last edited by godishope on Tue Aug 28, 2012 9:14 pm, edited 1 time in total.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby chelseablue » Sun Jul 29, 2012 4:08 am

Dr. Steven Houser, Cleveland, works with patients with ENS. I think he he uses alloderm inserts to increase nasal resistance which ironically helps ENS patients breathe better. Godishope, I PRAY that you find relief from your nightmare, hopefully Dr. Houser can help you. Wishing you only the best!
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby bachi » Sun Jul 29, 2012 9:17 am

Hi godishope,
Before I had my primary surgery, an ENT said I needed my turbinates reduced because they get too swollen from allergies. I do not recall if I breathed through my mouth then. But after surgery, I was definitely a mouth breather. I don't think the turbinate surgery helped to prevent my turbinates from swelling up big. Or other doctors have told me they were still swollen after the surgery. I always had lots of allergies, which causes a runny nose. Could someone with ENS still have a runny nose from allergies? If not, I guess I do not have it. You are not alone with not being able to breathe through your nose. As suggested, I think you should see Dr. Houser to see if there is anything he can do for you.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby sbsbsbsb » Sun Jul 29, 2012 9:42 am

Hey there - your revision surgeon is full of crap (sorry) and you have a right to be furious. It is a sad day when we go to a specialist and end up purposefully misinformed and have to do our own research for answers, when the doctor/expert, the one we trust for the matter, is the one who should have presented the info to you. I remember feeling so deceived and manipulated from my first dr. You are a strong person and that trait will help steer you out of the revision train. Get your nose fixed - time will go quickly, and soon you can look back on this ordeal and just may be a better person from it all. So keep your spirits up. Also, thank you so much for the ENS link - I have never seen that.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby Metooplease » Sun Jul 29, 2012 10:04 am

I'm so sorry Godishope, it's just not right that these docs did this to you. I hope you can put this all behind you with your next surgery and you can find someone who will really fix the issues. Find someone who is an ENT and will listen to your concerns. Don't go back to your current docs even if it is cheaper, I made that mistake and I regret it so much. Now I have multiple surgeries under my belt and my nose is still not fixed. I am pulling for you. Hugs
I'm happy to answer PM's but please make sure you have some posting history before contacting me or I probably won't respond, sorry.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby jinglealltheway » Tue Aug 07, 2012 5:47 pm

SUE THE DOCTOR. there is no reason why you should suffer for the rest of your life because of a doctors inability to properly assess your nasal physiology before/during surgery.
if you cannot breathe...concentrate....excercise....then your overall well being, and life quality is being compromised.
Do not stand for it. Sue the doctor.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby unknown33429@hotmail.com » Thu Aug 09, 2012 2:25 am

jinglealltheway wrote:SUE THE DOCTOR. there is no reason why you should suffer for the rest of your life because of a doctors inability to properly assess your nasal physiology before/during surgery.
if you cannot breathe...concentrate....excercise....then your overall well being, and life quality is being compromised.
Do not stand for it. Sue the doctor.


Winning a lawsuit against a surgeon in nearly impossible, since I'm assuming a waiver was signed beforehand by the patient.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby godishope » Thu Aug 09, 2012 3:28 am

I don't want to sue anyone, all I want is to breathe like a normal, average human being. That's all. I want to have mucus in my nose, be able to sneeze, be able to concentrate, be able to sleep... which are all due to this one condition.

Everyday I wake up, the second my eyes open up... I can automatically sense how dry my nose is... and this never stops no matter what I do. I can't go on much longer living like this and supposedly ENS symptoms usually get worse with time.

I mean... this isn't just a breathing issue (that's just part 1)... it's also a severely dry no mucus issue. Many people who can't breathe still produce mucus and don't suffer from constant dryness. I really cannot express how annoying this condition is.

There are some excellent youtube videos where people with ENS share their stories. THOSE are the only people I can relate to.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby godishope » Thu Aug 09, 2012 4:52 am

Let me give you an example of how it feels... Since it's very difficult to describe nasal sensations in words, I'm going to try to relate it to something that more people are familiar with.

Think about dehydration. We've all been dehydrated at some point in time from not consuming any water/beverages for a period of time... naturally, it can become quite uncomfortable after a while... so all we do is consume water and problem solved. This is the problem with my nose... it is dehydrated and lacking mucus. Unfortunately, there is nothing I can do to "hydrate it" or produce mucus and solve the extreme dryness issues.

The point is... if there is not enough saliva in your mouth, you may feel uncomfortable from the dryness. To take it to the next level, try performing a function (breathing in my case) while dehydrated... do a speech/talk for a long period of time (in my case i'm breathing 24 hours a day). Can you imagine the level of discomfort that comes with that? This has been going on for 2 years and I was assuming this revision I had would alleviate, if not solve the problems.

The troubled breathing is due to the severe dryness (due to turbinate resection). Turbinates work to humidify air, according to medical sources. They are responsible for the air we breathe in. In my nose, I cannot feel the air coming in and out of my nose since my turbinates were crippled during my primary. As stated below, my revision surgery focused on "rebuilding" my nose with grafts (which did nothing). This latest revision was just a waste of time, money, and body parts for no gain or benefit.

From my experience, that's how I'd describe ENS to someone who doesn't suffer from it. It's basically dehydration of the nose with unbearable dryness, burning sensations in the nostrils, headaches, and lack of sleep.

If you go to sleep dehydrated, chances are you're not going to get a good night sleep/wake up at night. That's the exact same issue I've been facing and it has been getting worse. If you go to school/work dehydrated, you're not going to function at your maximum potential. This has been going on every day, every minute, every second of my life... it's unbearable at times. Adding saline spray is like taking a teaspoon sized sip of water... It helps alleviate the dryness for a few minutes.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby CalvesBrah » Fri Aug 10, 2012 7:14 am

I really feel sorry for u. You didnt deserve this. And you didnt make a bad or an evil decision. You wanted to look better ,like all humans want. Is ENS treatable ? I really feel bad for u ,having a dry nose without mucus. Never knew how important is it till I read ur story.
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Re: My Real-Life Horror Nightmare -- I have: Empty Nose Syndrome

Postby DoYourHomework » Mon Feb 09, 2015 3:55 pm

GodIsHope,

I hope you are well on your path to recovery.
I'm having breathing issues due to a previous over-aggressive rhinoplasty, now looking to have a revision. One Dr has said my turbinates look fine, another has said one is enlarged, another has said both are englarged. Any theories as to why the difference in opinion and what the best course of action is? Def dont want to suffer from Empty Nose Syndrome or any complications so figure I'd ask. If anyone has any knowledge to share, please do.

CalvesBrah wrote:I really feel sorry for u. You didnt deserve this. And you didnt make a bad or an evil decision. You wanted to look better ,like all humans want. Is ENS treatable ? I really feel bad for u ,having a dry nose without mucus. Never knew how important is it till I read ur story.
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