Facial Pain - Empty Nose Syndrome

Posted by Bellatrac @bellatrac, Nov 9, 2011

Looking to discuss coping mechanisms/treatment options for atypical facial pain/empty nose syndrome - mine is a result of sinus surgery

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

@rachaelmw72

Thank you 🙂
I'm curious - who... Who are you? Are you a provider? Or just someone who has looked into this a lot?

Jump to this post

@rachaelmw72-

You’re welcome.

I have been through an ENT procedure. Was 100% healthy before my experience.

I have had to learn many things after my experience and if I see someone mention something that I know to be a common side effect that is not throughly explained or often ignored/downplayed, is when try to help.

There is another site called RealSelf. It is sponsored by Plastic Surgeons and they are the ones whom actually respond to the patients questions. So it is not a forum where strangers chime in. It only patient/provider Q&A.

There are many people who share this same complaint on that site. Some providers respond w/ follow up with your original surgeon, others provide with honest opinions and possible things that would help.

What I share is from the ENTs I have spoken with first hand or clinical research. ENTs know very very little about airflow and all of the mechanics around it. Breathing is a subjective experience. It is very hard to explain to a surgeon sensations, when airflow and the sensation of airflow is invisible.

I work in the medical field so I have access to different types of knowledge and my understanding and perception is probably different than most.

Stay positive and really look for adaptations and ways to calm to hyper awareness and sensitivity.

REPLY

Hello I also have facial pain due to Laryngeal sensory neuropathy and a specialist does Nerve block injections into both sides of the nerves to help with the nerve sensory pain. Are any type of nerve blocks available I know they have them for facial pain just not sure the exact name.

REPLY

I would like to join this support group.

REPLY
@pupperspeanutbucky

I would like to join this support group.

Jump to this post

Hi @pupperspeanutbucky, Welcome to Connect. By posting you should automatically get email notifications from this discussion. To check scroll to the top and look at the notification bell at the bottom right (see picture below). If you see a bell with an mail icon inside, you will receive email notifications when anyone posts to the discussion. You can also click on the bell to change whether or not and how to receive notifications.

Have you been diagnosed with empty nose syndrome?

REPLY
@rachaelmw72

How can I find one of the ENTs you're referring to? I currently have a follow-up with the ENT who did my turbinate reduction, but I'm assuming he's not one of those that you mentioned.

Jump to this post

Have you found specialists for ENS? I need treatment/surgery asap. My case is beyond treatment with humidification, irrigation, etc. My life is being tremendously affected. I hope you have gotten help, Rachael.

REPLY
@bailey20

Ok, I had sinus surgery in dec 2020 to clear out my sinuses and he didn't touch the turbinates and I was fine afterwards for months. I then had a copy of botox called botulax injected in my face and the bunny lines this past July and that is when I started having problems! I think I have ENS! Isn't there any medications out there to help with this like gabapentin for neuralgia? I don't don't have any stuffiness, I have pressure and swelling and pain in my nose burning and swelling around my nose. The cold air blowing gives me a headache and has increased my pain. It's constantly bothering me. The esthetician still thinks it's from the botox. She said give it another month but I think I have some nerve damage going on. I sleep fine and I don't feel like I can't breathe so IDK what this is. My nose is tight and swollen inside and outside. My ENT who did my surgery said he sees swelling in my nose and wants me to see a rheumatologist. I just saw a neurologist and did a brain MRI and saw nothing wrong and I'm having an MRA tomorrow. I'm having more blood work done and I'm talking to a rheumatologist tomorrow. I think I did this to myself!! If my turbinates are untouched then what is this?!!! I've been like this over 2 months already! I can't function!

Jump to this post

@bailey20 Have you found a physician who specializes in treating ENS? I hope you have found help and gotten relief. If you have the name of any specialists I would appreciate them so much. Thank you!

REPLY
@julo43

Have you found specialists for ENS? I need treatment/surgery asap. My case is beyond treatment with humidification, irrigation, etc. My life is being tremendously affected. I hope you have gotten help, Rachael.

Jump to this post

@julo43

What are your symptoms?
What was your surgery?

REPLY

Hi,
I hope I am not too wordy…
I had turbinate reduction done a year ago. I have congestion on right side, dryness, repeated sinus infections, and pain. The “congestion” causes a snoring sound when exhaling lying down to sleep. The noise/vibration and disrupted airflow has led to extreme sleep deprivation. It also impairs my ability to inhale the Nebulizer mist on that side. The airflow is just too messed up. After consults with two different ENTs, they explained that way too much turbinate had been removed. They explained the irony of how wide open that right side is! But it is very congested.

I am so angry with myself. Usually I research things so much. I went to the first (surgical) ENT to get treatment for collapsing nostrils when I inhaled. He told me turbinate reduction would help to improve breathing too…so I said, “OK,” not knowing how critical the turbinates’ function is. After having these “noninvasive” outpatient procedures done in about 60 minutes, my life has been shockingly disrupted. I am very run down and desperate to get help.

REPLY
@julo43

Hi,
I hope I am not too wordy…
I had turbinate reduction done a year ago. I have congestion on right side, dryness, repeated sinus infections, and pain. The “congestion” causes a snoring sound when exhaling lying down to sleep. The noise/vibration and disrupted airflow has led to extreme sleep deprivation. It also impairs my ability to inhale the Nebulizer mist on that side. The airflow is just too messed up. After consults with two different ENTs, they explained that way too much turbinate had been removed. They explained the irony of how wide open that right side is! But it is very congested.

I am so angry with myself. Usually I research things so much. I went to the first (surgical) ENT to get treatment for collapsing nostrils when I inhaled. He told me turbinate reduction would help to improve breathing too…so I said, “OK,” not knowing how critical the turbinates’ function is. After having these “noninvasive” outpatient procedures done in about 60 minutes, my life has been shockingly disrupted. I am very run down and desperate to get help.

Jump to this post

Let me clarify that the symptoms described in my first paragraph have begun since the surgery.

REPLY
@julo43

Hi,
I hope I am not too wordy…
I had turbinate reduction done a year ago. I have congestion on right side, dryness, repeated sinus infections, and pain. The “congestion” causes a snoring sound when exhaling lying down to sleep. The noise/vibration and disrupted airflow has led to extreme sleep deprivation. It also impairs my ability to inhale the Nebulizer mist on that side. The airflow is just too messed up. After consults with two different ENTs, they explained that way too much turbinate had been removed. They explained the irony of how wide open that right side is! But it is very congested.

I am so angry with myself. Usually I research things so much. I went to the first (surgical) ENT to get treatment for collapsing nostrils when I inhaled. He told me turbinate reduction would help to improve breathing too…so I said, “OK,” not knowing how critical the turbinates’ function is. After having these “noninvasive” outpatient procedures done in about 60 minutes, my life has been shockingly disrupted. I am very run down and desperate to get help.

Jump to this post

@julo43

Sorry to hear this. Don’t be angry with yourself.

It’s hard to believe there are surgeons out there who really don’t know what they are doing. Unfortunately this is common in the ENT specialty.
This is actually way more common than they like to admit. But no one’s cases are documented. Your case is not documented anywhere so imagine all of the others. You are not alone.

The positive for you is that you’ve had 2 ENTs confirm your condition. Instead of being told otherwise.

You can see Dr. Nayak at Stanford who tries to help patients with this issue.

What are all of your current symptoms?
Are your sinus infections from the dryness?

REPLY
Please sign in or register to post a reply.