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Facial Pain - Empty Nose Syndrome

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

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@jrsigurl

This is my first post to a forum. I have been in constant pain and discomfort that seems to be getting worse when I can't sleep. I had a septoplasty and turbinate reduction in 2017 to correct stuffiness and inability to breathe through my nose.Recovery for me took longer than I was told, I had to stay overnight instead on the outpatient surgery that I was told I'd have. After going home, I went to ER because I had sharp pains in my arm and heart palipitations. I complained to my ENT about my symptoms, dry mouth, eyes burning, body temperature changes, dryness in my nose, lack of mucus and when I do have it, it is extremely thick like the slime kids play with. It takes forever to get anything out. My complaints began with feeling like I had a big hollow in my nasal area, sense of suffocating and since I already have sleep apnea I didn't think much of it but it was a different kind of feeling, which occurred when I would dose off to sleep or just randomly feeling like I wasn't getting enough air, even though I could take a deep breath and my nasal passage seemed clear. I was on antibiotics during recovery as a normal procedure and I did the rinsing with budesanide, mupirocin and saline. I thought I was supposed to get stents removed but when I went for my appointment, I was told, that they didn't have to remove them because they were dissolvable packing. I didn't get a whole lot of drainage and I thought maybe something was left up there but I continued my rinses as much as 3 times a day. I have recurrent sinus infections, more than I have ever had and a feeling like my left ear was infected. I feel like all of my protection in my nose is gone. I hack/snort all day trying to clear mucus which mostly falls to the back of my throat. Long story short, I researched my symptoms and asked my Dr about ENS, he said oh you don't have that if you did you would know, everything looks fine and he suggested another surgery. I was hesitant and said I'd consider it. Before doing so, I decided I would get a second opinion which I did. I randomly selected another ENT and he said everything looked fine he didn't think I needed another surgery. In the meantime, I continued to experience the symptoms mentioned and even more. I was having stiffness in my neck and pain in the back of my head. After seeing the 2nd Dr for a while, he was now suggesting surgery, I asked for CT scan again and MRI and he said the results look fine. I declined surgery because I am afraid that they'll take what's left of my nose and he said he can't do much for me then and referred me to neurologist and another ENT at my request. I can't seem to find anyone who can give me a diagnosis. I feel like I have ENS and possible other surgery induced conditions. By the way, I almost forgot to mention that I get maybe 2-3 sometimes 4-5 hours of sleep if I'm lucky. Some nights I get a good night sleep and when I do I sleep at least 10-12 hours and feel somewhat refreshed. Lately it's been less sleep though.

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Replies to "This is my first post to a forum. I have been in constant pain and discomfort..."

you sound like you have ens. caused by removal of too much turbinate tissue; can occur during septoplasty. You have all the symptoms - go to facebook ENS support group (the main group). Will meet others and get advice from them. Most doctors won't recognize ENS. There are a few here and there that do.