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Facial Pain - Empty Nose Syndrome

Ear, Nose & Throat (ENT) | Last Active: Sep 4, 2023 | Replies (93)

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@healthiswealth1

Good morning,

I have been formally diagnosed with empty nose syndrome due to suspected nerve damage, lack of nasal mucosa, and apparent scarring on my epithiliam that apparently did not heal correctly. The functions in my nasal turbinates progressivley got worse after my surgery that occured a few years ago(ens can occur after surgery, months, or a few years after) according to Subinoy Das of the sinus institute in Colombus Ohio. Fortunatley I still have my nasal turbinates, though the functionality as stated above is what has caused a number of issues. My lack of air sensation has thrown a constant discord in my autonomic nervous system as far as symptoms of dysautonomia/pots(constant chronic muscle tension, swallowing issues, frequent urination, excessive sweating ect.) which is theorized to be associated with many individuals who have Ens. My question is if there is currently any regenerative therapies outside of using stem cell injections to better recooperate affected nasal organ and surrounding nerves? Also if there are any sprays or techniques to re epithilialize damaged nasal mucosa?
Lastly, is there any modern technology that can detect damage on my nasal turbinate sensory nerves that are supposedly assosiated with the trigenial nerve?

Thank you.

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Replies to "Good morning, I have been formally diagnosed with empty nose syndrome due to suspected nerve damage,..."

Hello,
I am new to this forum.
Could you tell me more about how you were formally diagnosed with ENS? Were you seen in person by Dr. Das? Or was it just a phone consult?
I had FESS surgery a year and half ago and have been on a journey for the last year to understand what has been going on.
I have been told, I do have scarring, but that shouldn’t be causing my pain. I have seen 4 different ENTs. I have been told by all, that they see inflammation and blockages and their only solution is a revision surgery. I tried the saline/budesonide rinse, but can not make it that long as it causes more pain and dryness.
Could you tell me more about your journey with this so I could get a better understanding of what I am experiencing is ENS, or if I should go another route for healing.

Thank you