Mayo Clinic Connect
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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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/
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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.
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