Facial Pain - Empty Nose Syndrome

Posted by Bellatrac @bellatrac, Nov 9, 2011

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?

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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).

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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.”
https://en.wikipedia.org/w/index.php?title=Empty_nose_syndrome#Treatment
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.
http://www.entsurgery.net/what-is-ent-surgery.html

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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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@joannemaisey

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.

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Has anyone actually seen a Mayo Clinic doctor for this condition? Live in Madison, Wisconsin and am in search of help.

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@ashleyhall

Has anyone actually seen a Mayo Clinic doctor for this condition? Live in Madison, Wisconsin and am in search of help.

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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?

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@lisalucier

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?

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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

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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?

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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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@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"

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@barbarn

@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"

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Hi @barbarn
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.
Colleen

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