Looking to discuss coping mechanisms/treatment options for atypical facial pain/empty nose syndrome – mine is a result of sinus surgery
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Thank you for the help Lisa !! I got to a point where nothing really helps, except a body temperature shower once in a while , and my left turbine is constantly burning, inflamed, stinging, swollen and sensitive to cold wind air conditioning, dust smell, you name it . I feel my respiratory system weak, stiff and compromised a lot . If anyone has any suggestions I’ll be very thankful !
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Hi. Have you seen a doctor who specifically assesses empty nose syndrome? Have you been seen by your original surgeon? Have you had these symptoms progressively over the past from your surgery or sudden onset? I have had similar symptoms that I am trying to currently get addressed 1.5 years post surgery.
I have not heard of the Stanford group. What is it? I have constant pain which has now expanded to the entire left side of my head. I’ve been taking Vimpat for several years and it has provided much relief. I have found relief from congestion with sinucleanse rinses – I now use the squeeze bottle instead of the teapot which is much easier.
I think they are referring to Stanford University, California. There is a doctor who is familiar with ENS there.
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.
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.
Anyone in this group have any new tips or advice for the pain portion or dryness?
I was diagnosed with possible empty nose syndrome, please, please please, I need help for the condition worsens with severe dryness burning stinging in ears throat chest , can’t breath fully because it causes unbearable inhuman symptoms. Dizziness and lethargy, inflammation non stop, thickening of mucosa is also present . I beg, for the sake of my daughter and family, help me . Thank you sooo much !
You might want to check out the following website: http://buteykoclinic.com/ for your breathing. It offered some help for me. Also: https://youtu.be/FtMLN9i9cdE. Above all keep your nose moisturized with saline spray or Ayr saline gel. Nasal rinses also help. By the way, how can a doctor do this to us? Surely they know the functions of the nasal turbinates. Unbelievable. P.S. I apply the saline gel to inside of my nose at night with a Q-tip. It helps. Good luck…Jim s
@drumline7860 -would you mind sharing your experience or type of surgery?
I’ve tried many things. Can not figure out if it’s ENS or not. The name of the syndrome is misleading as it should be post surgical nasal dysfunction. ENTs have given me mixed follow up assessments/consultations.
It was supposed to fix a deviated septum and remove excess tissue. However the doctor removed most of the turbinates on one side and part of the other side. This was confirmed by another ENT doctor. I now suffer with dry nose, thick nasal discharge down the throat, fatigue, feel like I'm not getting enough oxygen in my lungs, and among other things, and overall BADASS ATTITUDE! Sorry 'bout that , but there should be some sort of restitution.
@drumline7860 Thank you for explaining. Mine was septum/ left middle turbinate resection, apparently changed and moved just to gain access to sinus area.
Do you experience airflow dynamic issues, causing head pressure and dizziness? Have you experienced different muscular tightness, over compensating for inhalation and exhalation?
The dizziness has pretty much gone away along with some of the other issues i.e. headache etc. The breathing problems are still there but practicing the breathing exercises have definitely helped with that. My suggestion to you: Check out the two sites that I sent earlier and google "breathing exercises for empty nose syndrome". I wish I had the silver bullet for this, but I'm still struggling with it myself. P.S. A submucosal resection of the turbinate is removal of bone from the lower turbinates and in some cases can cause complications like what you are experiencing. Just hang in there.
@drumline7860-thank you for your help. Due to my inferior turbinates not being touched, I believe some of the ENTs aren’t understanding some of what I am describing as they so narrowly understand how disruption of any kind to the nasal/sinus cavity can cause all kinds of symptoms of distress regardless of what their text books taught them.
I never cared to have an exact diagnosis, i just knew something was not right immediately after. Weather or not officially “ENS”or not, there is dysfunction. I will look up the links you suggested. And I appreciate your honest support/reply.
I didn't know that mine were cut either until I had a follow up CT scan.
@drumline7860 -I’ve had multiple post surgical CTs.
You can clearly see my Middle Turbinate resection, deviated septal change and sinus changes. Inferior turbinates actually appear to look bigger now, assuming overcompensating for increased airflow.
Constant wind tunnel sound, dryness, headaches, total disruption of smooth airflow sensation. Didn’t know what ENS was. Kept explaining all these symptoms. I do believe “ENS” or whatever name they want to coin it, is so much more than just disrupting the inferior turbinates. Airflow disruption can happen anywhere in the nasal cavity. Too much airflow, too fast also equals dryness, even in a healthy nasal cavity. I know my responses are long. I’ve just done so much research. ENTs don’t even know how the nose works.
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