@eboch9 Welcome to Mayo Clinic Connect, a place to give and get support. It sounds like the Vivaer procedure greatly improved your quality of life. May I ask what you found to be the most important factors when weighing the pros/cons and risks/benefits?

Hi group I’m suffering from empty nose syndrome has anyone had any relief from this syndrome

@123d-Hi. What was your surgery? And what are your symptoms?

I had an endoscopy by ENT dr and neuro surgeon b9 tumor the size of a pea on my right optic nerve in stead of getting my head cut they went through my nose. After surgery I went to my follow up appointments ent said it takes time because I was having awful symptoms finally I went to another ent he ordered cat scan that’s when I found out from the surgery ens he couldn’t believe they completely took everything out of my nose . Plus I have other compilations due to it

What was your surgery

@123d-did the ENT diagnose you with ENS? Did he tell you which areas were removed? Can you explain your symptoms?

The ent diagnosed it not the one that did it . He said and showed me the picture of the cat scan I started to cry there is nothing there he wouldn’t be able to repair cause there’s nothing to work with left. It affected my right ear which I have tube in now. Cant breathe, headache, dry nose can’t blow my nose or smell lots of pain can’t sleep

@123d-I am so sorry you are experiencing this. These are the typical symptoms of it. The only reason I am on this site is due to this. It is very common in the ENT world. They are surgeons, first and foremost. On my journey I have learned that ENTs have very little understanding of how the nose functions and that the inside of the nose is an entire organ system.
There are 2 ENTs in the country who are kind enough to acknowledge this is an issue. I am not sure where you are located, but one is at Stanford and one is in Ohio. Moisture and humidification is recommended. Try to retain as much moisture as you can in your nose. Try to find someone who is understanding and compassionate towards the condition.
Acupuncture for the headaches.
There are many different reasons for the pain. Most of the the pain is Neuropathic, so that’s why NSAIDS do not work.
Did you sign a detailed consent?

No I was never told this before the surgery or after the surgery by the one that did this. What is wrong with your nose

You can private message me if you would like. I will explain more there.

Ok I thought I did

I live in Vista (North San Diego). My son had a doctor reduce his turbinates during jaw surgery. He has Empty Nose Syndrome. What you describe sounds like ENS. We wasted a lot of time on cardiologists, pulmonology, etc. I am not medical professional so this is disclaimer re medical advice. But it has been 2 years of hell since jaw surgeon cut his turbinates. He gets episodes of suffocation and breathlessness, extremely dry nose, sore throat from air rushing into throat and not being warmed by turbs, cough from air not being conditioned and warmed prior to entering lungs. ENS due to cutting off the inferior turbinates (my son had heads, tails, and bottoms cut off by surgeon who said he would not touch them). There is an Empty Nose Forum on facebook. Try to find them. Some had rib implanted into remaining turbinate remnant to enlarge them and slow air flow (main doctor who does it is in Italy-Dr. Piazza-3 year wait and no travel now with Covid). The shortness of breath and suffocation in my son's case are because turbinates/nerves damaged and brain can't sense air flowing in. ENT doctors cover up for jaw surgeon and each other. My son has seen the U.S. doctors (Dr. Subinoy Das in Ohio does stem cell therapy-didn't work; Dr. Jakar Nayak in Stanford (he may not still be doing implants but he may inject a solution that creates volume so you can tell if implants would help). Dr. Steven Houser is pioneer who discovered cause of ENS and moderates the ENS forum (believe has suspended the alloderm implants he was doing). It has to do with airflow and turbinates not sensing airflow. Also, turbinates may grow back somewhat but may also atrophy. Try to find the Empty Nose Forum on Facebook. The people there have suffered a long time and are best source of info. Some report feeling better in humid environments. We wasted a lot of time and money on pulmonology & cardiology experts who found nothing wrong. Find Empty Nose Forum. They are all praying for advances in stem cells or organ regrowth/transplant. My son has almost fainted on several occasions when the suffocation comes on.