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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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?
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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.
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.
@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
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.
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.
I attribute these symptoms as being related to ENS, having anxiety and a nervous disorder. I find myself shaking my legs or just having to constantly move and flex. It is hard to relax with ENS. I watch YouTube videos for relaxation, sleep meditation, healing and try and use lots of homeopathic remedies, essential oils, multi vitamins, PH water with electrolytes. I know that my body is compensating and it is hard to pinpoint everything that is going on but I can tell you that my body is in stress mode/ fight or flight constantly which is why more rest is required for repair. I also believe that the head pain in the back of my head at the base of my skull is so prominent that it minimizes some of the other symptoms of ENS. I have the dry nose, dry eyes, air intake oxygen problem too along with vertigo, ears ringing and popping. It is becoming the norm for me. Trying to survive and cope. I found a support group on Facebook, it really helps to talk to others going through these changes from ENS. I'm sure there are other diagnosis related to it but hard to get proper diagnosis and cause. With the skull base pain, I was told by ENT that it is not related to my sinus surgery and I should see my primary dr, who told me to go back to ENT who told me to go back to primary. Finally result from X ray indicated I have spondlylosis of the neck. I'm going really, I have never had any problem like that with my neck before the surgery.
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?
Hi @healthiswealth1 you may have noticed I moved your post to this discussion on empty nose syndrome in order for you to interact with others who have similar experiences. Simply click VIEW & REPLY in order to see your post.
I'm tagging a few other members who have Empty Nose Syndrome or Atrophic Rhinitis, like @joannemaisey @ashleyhall @jrsigurl @stephenjohn @warpedtrekker
Here's a list of related discussions on Connect.
– Vivaer nasal valve remodeling and Empty Nose Syndrome? https://connect.mayoclinic.org/discussion/vivaer-nasal-valve-remodeling-and-empty-nose-syndrome/
– Where did my snot go? Atropic Rhinitus mystery case https://connect.mayoclinic.org/discussion/where-did-my-snot-go-atropic-rhinitus-mystery-case/
In your search for advances in regenerative medicine, you may wish to search for clinical trials here: https://www.mayo.edu/research/centers-programs/center-regenerative-medicine
Have you had a chance to talk to your ENT about treatment options?
Thank you for the response. There are very minimal treatment options as only 6 ent worldwide attempt to treat ens. Treatments are also out of pocket unfortunatley and results tend to be short lived as others have mentioned. It would be great it mayo clinic could conduct a clinical trial or engage in more research as this condition a long with atrophic rhinitis have limited exploration in in regards to treatments and someday cures. It would be groundbreaking if more stem cell or regenerative measures can be undertaken for a community that has no formal trearment protocol to begin with a long with very devastating bodily and autonomic health issues that progressively worsen.
Thank you for reading.
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.
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 !
I also have information in left ear more than right, and besides the surgery I had left occipital nerve blocks and PRP in same places . A doctor with a compassionate heart might be able to help. Where there is a will there is a way . Thank you !
Hi, @marinelastef – the severe dryness, burning, stinging in your ears, throat and chest, plus difficulty breathing, dizziness and lethargy sound very challenging. I've moved your posts here so that you can connect with others who have been there.
Hoping others like @nrd1 @healthiswealth1 @joannemaisey @ashleyhall @jrsigurl will return to this discussion and share what has helped them with their potential or confirmed empty nose syndrome. @lioness @jenniferhunter and @sirgalahad also may have some input.
Is there anything you've found so far that brings any relief to these symptoms, marinelastef? Are you planning to get another opinion from another physician on your condition?
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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