Mayo Clinic Connect
Looking to discuss coping mechanisms/treatment options for atypical facial pain/empty nose syndrome – mine is a result of sinus surgery
Yes I had a deviated septum. On the left side. The doctor left a obvious bump on thr right side.Which left me in constant pain. With no answer why I was sent to a neurologist. He said to take the bump off not the turbinators. Therefore I am left with all the symptoms of Ens.They will not admit it. It keeps getting worse. Do you have an answer?
Welcome to Connect @dilkmanuel. Thank you for reactivating this discussion thread. I hope @bellatrac will return to share with you. In the meantime, can you tell us a bit more about you and how you are coping with Empty Nose Syndrome (ENS).
From Wikipedia, “In some people, surgery to restore missing or reduced turbinates may be beneficial. … About 21% of the people had no or marginal improvement but the rest reported significant relief of their symptoms. Since none of the studies used placebo or blinding there may be a strong placebo effect or bias in reporting.”
A patient suffering from Empty Nose Syndrome might consult the nearest ENT surgeon and get a recommendation for a specialist who performs turbinate reconstruction surgery — such specialists seem to be few in number so that there might be considerable difficulty in having the turbinate reconstruction performed.
Liked by vl13
I have constant infraorbital pain on the left side and have been told I have ENS with a feeling of chronic congestion . Putting Q-tips soaked in menthol inside my nostrils helps a bit. Have you any other suggestions? What do you know about the Stanford group?
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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.
Has anyone actually seen a Mayo Clinic doctor for this condition? Live in Madison, Wisconsin and am in search of help.
Hi, @ashleyhall, and
welcome to Mayo Clinic Connect. I apologize for the delayed response. Hoping @joannemaisey and @bellatrac will return and add any input on whether they may have been treated at Mayo Clinic for Empty Nose Syndrome.
Will you share a bit about what your symptoms are like currently, @ashleyhall?
You ask what my symptoms are like currently. Here are the most troublesome:
Nearly constant dizziness/lightheadedness and fullness in my ears – MOST Problematic.
Pressure/discomfort over eyes (eyebrow area) and forehead
Sense of pressure behind eyes and eye burning. Frequently squeeze blink
At times, it feels like nothing stops ice cold air from hitting the interior of my sinus cavities despite the fact I sitting in my house
Occasional pressure on the left side of the bridge of my nose
Occasions of phantom smells, sometime worse than others, but hypersensitivity to volatile compounds such as perfume
Liked by Lisa Lucier, Connect Moderator
Hi, @ashleyhall – with these troublesome symptoms you are experiencing, have you found anything that helps? What does your primary care doctor say about them?
@luky2girls – have you also experienced empty nose syndrome? If so, will you tell us more about your symptoms?
Primary Care Internist has sent me to two allergy doctors, and an ENT with no resolution. The ENT doctors here do not recognize ENS and are unwilling to address the possibility that is my problem. I have had a CT scan of my sinuses and an MRI of my head with no resolution. A second MRI/MRA was done 12/20 and I have no results for yet. Beyond that, my primary care doctor is as frustrated as I am at this point. The possibility of ENS was something that I found while researching my symptoms and he feels its a strong possibility. The problem is, there are few doctors that recognize ENS which brings us to why I was reaching out to Mayo Clinic. Can I assume that you can not refer me to a Mayo doctor that recognizes ENS?
@colleenyoung – how do we find a "thread" – or is that something you (as director) just do when you see a post re; something discussed at sometime previously. I am interested in RLS/PLMD, but not sure how to find the "thread"
Threads are called "discussions" on Connect. Connect is organized by groups. See all the groups in the Group Directory: https://connect.mayoclinic.org/groups/
In each group are multiple Discussions on various topics.
Discussions related to RLS/PLMD can be found in the Sleep Health group and other groups. Here are a few to get you started:
– Restless Leg Syndrome https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/
– restless legs syndrome (RLS) and mirtazapine https://connect.mayoclinic.org/discussion/facial-pain-empty-nose-syndrome/
– Is this RLS (restless leg syndrome) https://connect.mayoclinic.org/discussion/is-this-rls-restless-leg-syndrome/
And of course, you started this great discussion:
– Peripheral neuropathy, RLS and PLMD https://connect.mayoclinic.org/discussion/peripheral-neuropathy-rls-and-plmd/
I found these discussion by using the Search function. Learn more how:
– Search – It can help you! https://connect.mayoclinic.org/discussion/search-it-can-help-you/
Hope this helps.
Hi, @ashleyhall – I can imagine that would be truly frustrating to see multiple doctors with no resolution. What I'd suggest is to contact Mayo Clinic appointments http://mayocl.in/1mtmR63 to inquire about appropriate specialization and the potential of being seen at Mayo.
@davidwhitehurstbrown Thank you for posting this information. Was just diagnosed with ENS 2 months ago after moved to Northern Utah from West Texas. The dryer climate caused me to seek out an ENT. Thought my chronic sinusitis was returning. Have had 5 endoscopic sinus surgeries. Cat scan showed ENS. Older ENT said it was the most severe case he had seen. Great! Now I constantly have drainage in my throat, feel nauseous.
Caught a cold yesterday & my frontal sinuses are very painful. Icing my face to help with pain.
The ENT did not offer any soulutions besides returning in a year for allergy tests. Shots could help with the ENS side effects. I have other health issues, so this is just another one to deal with.
Luckily I have a great Husband, Daughter & family. It is hard sometimes tho.
@joannemaisey, @colleenyoung @bellatrac
Interested in discussing symptoms further with anyone who had posted here. Hope you don’t mind that I tagged you. No worries if you if you do not want to respond. Thanks
Liked by Colleen Young, Connect Director
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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