Facial Pain - Empty Nose Syndrome

Hi,
I hope I am not too wordy…
I had turbinate reduction done a year ago. I have congestion on right side, dryness, repeated sinus infections, and pain. The “congestion” causes a snoring sound when exhaling lying down to sleep. The noise/vibration and disrupted airflow has led to extreme sleep deprivation. It also impairs my ability to inhale the Nebulizer mist on that side. The airflow is just too messed up. After consults with two different ENTs, they explained that way too much turbinate had been removed. They explained the irony of how wide open that right side is! But it is very congested.

I am so angry with myself. Usually I research things so much. I went to the first (surgical) ENT to get treatment for collapsing nostrils when I inhaled. He told me turbinate reduction would help to improve breathing too…so I said, “OK,” not knowing how critical the turbinates’ function is. After having these “noninvasive” outpatient procedures done in about 60 minutes, my life has been shockingly disrupted. I am very run down and desperate to get help.

Jump to this post

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!

Jump to this post

@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.

Jump to this post

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!

Jump to this post

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.

Jump to this post

May I ask what the spray was that was antibacterial/antifungal?

Jump to this post