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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Hello. I stumbled upon this page while searching the web for help with chronic sinus pain. I have the symptoms of ENS but I have never had surgery on sinuses or Turbinates. I am writing here to ask if it's possible to have ENS without ever having surgery? I have had symptoms like the ones I've read about on this group for thirty years and they are getting worse. I've also tried all the treatments I see talked about: a humidifier at night and saline nasal sprays throughout the day and night. I stuff moistened wads of toilet paper inside my right nostril to stop air flow because the pain caused by air going through is more than I can take. The right side of my face around the eye, nose and lips feel tingling and numb most of the time – it feels like when Novocain is wearing off from a dental procedure. (I had Bell's Palsy about 7 years ago on that side of my face – so this could be residual effects of that.) But the biggest issue is that breathing through my right nostril is excruciating and the accompanying headache is debilitating. When it's severe I cannot drive or leave the house. The pain is accompanied by nausea, intestinal distress and occasional dry heaves as well. Recently I've experience night sweats and then chills. (At first, I thought I might have the humidifier set too high but it's on the lowest setting.) Still I wake up with pain in my sinus area and a headache every day. I've taken so much OTC pain medication that my stomach is upset and painful too. If I can't find some way to eliminated or even manage the pain I'm afraid I'll lose my job. Not to mention that I can't live a normal life or make any plans to do anything for fear I'll be incapacitated with pain on any given day.
I saw a Youtube video of Megan Kelly on the Today show (2018) talking about ENS. A Dr. Subinoy Das was on the show and talked about regenerative tissue therapy for this condition. Has anyone had experience with that? If anyone has any information on a permanent solution for this, I would be so grateful if for any suggestions to offer me some hope.
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@denisec526-Hi. I’m very sorry to hear you are/have been experiencing this feeling for so long.
-Has it been a slow progression over time of the 30 years?
-Do not lose hope. In fact to provide you with hope and to calm your anxiety, know that you would not have “ENS” if you have never had surgery. However when we are under distress it is easy to google symptoms and read the worst case scenario.
To put your mind at ease, you could schedule a 30 min phone consult with Dr. Das. He is kind and spends time explaining/answering questions.
The nasal cavity is so complex and gets its communication from the parasympathetic nervous system. The nervous system plays a key role in hyper responsiveness in the nasal cavity, sometimes causing what normally wouldn’t be a painful stimuli to be perceived as painful.
Have you seen someone to look into your nasal cavity and health of your nasal mucosa? To see if this could be an airflow issue causing the burning feeling?
Dry nasal mucosa can cause a lot of irritation to the nerves. I know you said you’ve tried all the recommendations and have found no relief. Are you a smoker or around anyone who smokes? What is your daily environmental climate like? Do you stay hydrated? Those are all questions an ENT would ask.
You also mentioned Bells Palsey, I’m not sure what the cause of it was. I’m assuming you now have an understanding of cranial nerves. Those same cranial
nerves also innervate the nasal cavity and can easily be activated. Have you talked to the Neurologist about the burning pain you are having in the nose?
A good Neuro can explain how all of the nerves get overly activated.
In the mean time while you are trying to find relief, I recommend anything that can reduce nerve inflammation. Healthy diet, hydration, sleep, and stress reduction activities.
@nrd1 I appreciate you taking the time to reply. I really can't say that I find any relief or peace of mind in assurances that I can't have ENS since I've never had nasal surgery. Regardless of what label I give it, I share all the same symptoms and life-limiting pain as others in this community describe so at least I know those in this group understand what I'm going through. And honestly, "Empty Nose" perfectly describes the way it feels in my right sinus area. When I breath in I can feel the air flooding into a large empty space and causing pain that is sometimes excruciating and other times just tires me out. I do understand about nerve damage – it was explained to me when I had Bell's Palsey – which is an infection of a cranial nerve. The doctor told me it could take years for it to completely go away and some symptom's never go away.
To answer your questions: Yes I've had sinus problems for over 30 years and they have gotten progressively worse. I'm not and never have been a smoker — or been around any smokers. I am almost 60 and have suffered from frequent sinus stuffiness and infections since I was in my 20's. I started using decongestant sinus sprays a lot while I was in college. I kept that up for close to a decade until they stopped working — meaning they no longer relieved congestion and actually caused more pain. I saw an ENT when I was about 28 for chronic sinus infections and he told me I should not use sprays because they could cause permanent damage to my sinuses. (Of course I had already stopped, but it was too late. For another 6 – 8 years I continued with infections, saw doctors when it lasted more than 5 days, took every type of antibiotic they offered and used OTC oral decongestant and pain pills.
Then in my later 30's I notice my sinuses stopped getting blocked up or stuffy when I had a cold. I felt the usual sinus pain & pressure in my face, got fevers sometimes and had a runny nose — but my nasal passage felt clear and I could breath in and out even while lying down to sleep at night. (At least on my right side. The left still sometimes got partially blocked.) I thought that was good sign – like maybe my sinuses were getting better despite the sinus headaches and facial pain and I could control those symptoms fairly well with Advil or Tylenol. If pain persisted more than 5 days and got worse, I'd see a doctor like I always did. I'd go in with no stuffy nose or cough, just pink cheeks that were warm to the touch and even seemed puffy to me. The doctor usually diagnosed it as "deep sinus infection", prescribed antibiotics and recommended saline sprays and oral decongestants. After some years of seeing me for sinus problems, my primary care doctor referred me to an ENT. This one did a scan and told me that there were no blockages or abnormalities found. He suggested my symptoms could be allergies. So I started taking Claritin (or similar) on a regular basis and that seemed to help at first. Reduced the severity of pain if not the frequency.
By my mid 50's the condition began to impact my day to day life and ability to work. The frequency and severity of my "sinus headaches" increased. They went from a few days once a month, to episodes that lasted 3-4 days at least twice a month. And this unpleasant and painful "empty sinus" sensation started. For a while it was just uncomfortable pain, but it gradually increased to unbearable making the simple act of breathing so painful that I unconsciously stop breathing and find myself gasping for breath. And I began to experience severe sharp pain whenever I breathed in cool air. (I recall this happening when I was kid and went outdoors in 10 degree temperatures.) But now it happens for temperatures below 50 degrees — and if I stand too close when I open my freezer and accidentally breath in.) The pain and stress associated with it is also triggering migraine-like headaches that send me to bed in a darkened for room for an entire day at a time. I do humidifiers in my bedroom and in my home office space. I drink at least 3 quarts of water a day, and have an insulated tumbler by my bed that I drink at night because I'm doing so much mouth breathing that my tongue & throat get dried out. Needless to say, waking every 90 minutes or so to drink water and then having to use the bathroom a couple times at night means I never feel well rested.
If I can't have ENS because it's a result of surgery-induced nerve damage, then I still have to wonder if the same nerve damage can happen as a result of nasal spray abuse and decades of chronic sinus infections. Either way, I do appreciate being able to tell someone about all this who has had similar chronic pain and understands what I'm going through. Thank you for listening.
@denisec526– you’re very welcome and your detailed reply & information is very helpful. You sound very knowledgeable of your own body which is good, so you can be your own advocate.
-With the additional information you provided I can share with you what I have learned from ENTs themselves and other medical professionals.
-If you experienced hypersensitivity in this area as a child, as you explained in the cold weather in which you noticed it and can remember, then it sounds like this area for you was prone to sensitivity, congestion from the elements and activation from your nervous system. Perhaps a more thin mucosal lining.
-QUESTION-do you have any other body sensitivity issues? Tight neck or shoulders?
-We all start out with a mucosal lining throughout the body. The same lining in your nose, runs through your throat, gi tract, gut etc…Some people suffer gi upset, while some people suffer nasal issues. It’s all the same nervous system function. Stress can activate in different ways in different areas of the body. This is what sets of “disease” or “itis”. Cold temperature is a stress response to the body. Some people’s scalps tighten when they feel cold. Other people’s noses constrict more than others. It’s all an example of “stress response”
-It is very important to care for lining inside of the nose as it is prone to dryness from so many things and overtime it gets a little more dry as we age.
-Unfortunately nasal steroid sprays, antihistamines, and many OTC medications we reach for out of desperation have so many drying affects and they do not warn people of these affects over time. They are just trying to stop the issue in the present moment.
It’s a band aid for a systemic issue and naturally that bandaid is going to wear off.
-ENTs are very behind in understanding the why’s and how’s of the nasal function itself. They leave out the major systemic/internal component and treat every patient the same. Most patients would never need an antibiotic for a sinus inflammation issue. Most are viral. And people prone to congestion tend to get viral infections more often. If not diagnosed correctly from the beginning, this can actually set the patient up for more harm down the road.
-ENTs are very unhelpful with describing the objective of pain. They will only look for an objective cause for the pain. Being a blockage or infection/inflammation.
QUESTION: If you have been to an ENT and they’ve told you they don’t see any structural abnormalities (which is a good thing) then I’m sure they have then told you it is inflammation?
-The nasal mucosa is extremely delicate and not like any other skin externally. It is epithelial tissue, meant to expand and contract. It follows a very fine and unique system to expand and contract throughout the day. This system also expands contracts during “concentration” “reading” and “fight or flight”.
-If over time this tissue has atrophied you might not be experiencing the congestion that you had been used to. Causing you to feel the emptiness sensation.
If on your right side the mucosa is not sensing the air appropriately, it is also not moisturizing or humidifying
If you have less nasal secretions on the right side, this can cause you to feel a burning sensation as well.
A few recommendations to add as options:
-I would recommend scheduling a phone consult with Dr. Das as he could explain this better and ask better questions from a medical professional. He possibly has helped non surgical patients with this issue.
-There is a reflex arc that travels along the trigeminal nucleus when the nerve is irritated in the nose. This reflex arc can cause migraine symptoms or vice versa.
Many people diagnosed with migraine only get symptoms in the nose. So it is worth describing this entire feeling to a Neuro.
-Work with a Somatic body therapist to help with the pain response. Pain brings anxiety and anxiety brings pain. The nerves will be more activated in the nose when the nervous system is stressed.
-Research Ayurvedic ways you bring healing back to the nasal mucosa.
-With much of your antibiotic and OTC pain med use. Try to restore your gut lining as much as possible. Disruption to the gut lowers the stress/anxiety pain tolerance response. (This is a while other area of gut-brain axis, which I won’t go into) But it ALL matters.
I hope my additional points can help you.
May I ask who is Dr Das? Is this a physician in the midwest?
@bride-he is located in Ohio
is empty nose syndrome real thing?
Hello @minakh, welcome to Mayo Connect. I’d never heard of this before so I did some sleuthing. I found some past discussions on Empty Nose Syndrome for you and a link to a youtube video with one of the Mayo experts discussing this syndrome and treatment.
Were you diagnosed with ENS?
Hi minakh, I add my welcome. I've moved your question to this existing discussion about empty nose syndrome. I did this so you can meet others who live with ENS, like @denisec526 @nrd1 @chris77 @123d @bride @marychickadee and others
You may also be interested in these discussions:
– Empty Nose Syndrome (ENS): Does enlarging turbinates help?: https://connect.mayoclinic.org/discussion/ens-1/
– Vivaer nasal valve remodeling and Empty Nose Syndrome?: https://connect.mayoclinic.org/discussion/vivaer-nasal-valve-remodeling-and-empty-nose-syndrome/
Do you and your doctor suspect you may have empty nose syndrome?
@minakh-the name “empty nose syndrome” is misleading. It has to be thought of more as post surgical nasal dysfunction. But yes, it does exist, just as any other post surgical pain syndrome exists. The reason why this is more bothersome to people than in any other area of the body, is because it is located in your center that you need 24/7 and it is located in the complex cranial nerves, rather than the spinal nerves. It is not rare. It is only “rare” because many ENTs will not acknowledge that they cause any harm and will often send patients who complain, post surgically, to a Neurologist. Without ever acknowledging that the patient has an issue post surgery. So if post surgical complications on not truly reported/tracked then they will always be “rare”. But yes this condition exists just as any other person who undergoes an unnecessary elective surgery and ends up with dysfunction and pain.
I had a polyp in my sinus track, this was removes and I had nerve damage on left side of face. I used CBD salve to control the pain. Took about a year or more before it healed. The surgery affects the eye tooth with infection, root canal. Every thing is good now. About 3 years, The ENT Mad never mentioned the issue on nerve damage or what caused it or what to do.
@farmer0233-thank you for sharing.
Most ENTs deal with patient complaints of “pain” pre surgery, so they are able to brush off patients whom have an entirely different type of pain complaint post surgery. I would advise any person whom sees and ENT and are recommended a surgery, to have them walk you through the anatomy of the cranial nerves and explain neuropathies of the cranial nerves. Most will not be able to do this. So seek out a Neurologist whom is not affiliated with that ENT, have them tell you how many patients they see post sinus/nasal surgeries due to complications. Cranial neuropathies and scarring are entirely different than other places on the body post surgery.
There are 100 different muscles in the face. All richly innervated by nerves embedded into the skull and brain. Be very cautious.
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