Facial Pain - Empty Nose Syndrome
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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may i ask if you found relief to your congestion issue ? I have similar problem everytime i lay down the same nosril side blocks , its very annoying and i am desperate to find somekind of solution. Ive done 2 conservative turbinate reductions in the past 2 years but always the same , all the sprays dont work no more... everytime during the night i wake up and one side nostril is comoletely blocked , only way to unblock is to stand back up for a few minutes... thank you
I am so very sorry you are suffering. Yes, it does sound very similar to my symptoms. I WISH I had some great news to share on my progress, but unfortunately, I have not found relief yet. One ENT suggested I check into having the two holes in my septum repaired, as that may help my issues greatly. He said that may be more the source of the snoring upon exhale, which is disrupting my sleep.
I am interested in exploring stem cell injections and possibly an implant. However, it is so hard to find a doctor to do this. It is understandable people are disappointed when these procedures don’t provide them with relief, but I think people need to understand these treatments are experimental, and for a physician to have the courage to at least try is a blessing! All the negative social media posts ripping on docs who are “crooks” because the procedure wasn’t successful is driving doctors AWAY from trying to help us!! There are so few who even try. For me, my life is so disrupted that I am willing to try something if there is a chance it will help.
I have tried all the “easy” at home treatments like sinus rinses and moisturizing nasal sprays, but it has not helped. One ENT prescribed an inhaled antibiotic/anti-fungal, which is somewhat helpful for the recurring sinus infections, but to me that is only a temporary fix.
I called Mayo Clinic in Rochester, and I was told none of their ENTs truant ENS. That as shocking and demoralizing. I always though Mayo Clinic could fix anything!
Are you having any troublesome accumulation of muses at the back of your throat? I did find a helpful exercise for that. Also, one reason my snoring when I exhale is bad is that the airflow in my nose is so disrupted, that mucus is moved along and distributed like usual. Instead it sits in pockets in my sinuses. Removing that mucus is helpful.
I am not sure if any of this is helpful to you. I just want to encourage you — keep looking for a specialist, keep trying anything suggested ( if safe) and don’t give up!
Mucus
@julo43 -
Thank you for returning and sharing your experience.
If you do have 2 large holes in your septum that could possibly help to get those fixed. At least the ENT was able to point those out for you.
The reason why Mayo Clinic has stopped treating/accepting patients based off ENS symptoms is that they are an institution that is measured on outcomes.
The ENT department there, ONLY does surgeries and with the conclusion that a new or revision surgery would improve QOL.
I do agree with you about the experimental type procedures for poor surgical outcomes. They are experimental and without patients to try them on, there is no way they would ever know if they worked for others. Every patient entering an experimental based only procedure should typically be aware of that and it is completely up to them if they are willing to proceed based off of trying and failing all other things.
Stanford ENT group is good place to start if you live close or can access.
And yes, I do believe these original surgeries can completely mess up the mucous flow pattern through the nose, causing things to be stagnant rather than get through easily as the original natural physiology allowed.
Wish you all the best on your journey.
Thank you!
May I ask what the spray was that was antibacterial/antifungal?
It is a rx compounded capsule that I mix with distilled water. Originally the plan was to deliver the liquid via nebulizer, but my airflow is so disrupted that I was unable to successfully inhale the mist, so I spray it into my nose from a bottle.
I checked the bottle for the name of the med and here is what it says “NN GENT 20 MG BUD 0.6 MG AMP B 10 MG”
Tbh I don’t know what those things are. Maybe it will make sense to you.
@julo43
That’s;
Gentamicin
Budesonide
And I’m not sure what the AMP is.
But as patients we’ve got to do a better job with this. You must know what is prescribed to you and what you are putting in your nose.
I’m sorry, but this is how many of these ENTs even get people into surgery, lack of questions.
So at least after the fact please be your own advocate and ask the questions of what they are prescribing and why.
Has any of the topicals helped you?
No need to educate me. I am surviving. Please focus on how your participation helps or hinders the group. Negative criticism of those trying to assist squelches participation.
Hi Wendy,
I hope you found my reply helpful. I am sorry I didn't take time to research the ingredients, but I thought that providing you at least the overview would allow you to look it up. 🙂
I got scolded for my shorthand approach by someone who thought they knew what I should be doing, but I have a medical expert by my side, so my knowledge of the chemical ingredients isn't necessary. 😉 Some people never miss a chance to feel superior through criticism of others. I say, "Eyes on your own paper." (Ha! I am sure I will get scolded for this reply also. I am barely surviving each day, so if people have enough time & energy to do that, I applaud them.)
Janis