Post Surgical Nasal Sinus Dysfunction/ENS

@bride-thank you for adding in your comments. And it is great to hear that you had met with someone who was honest.
• The only way people or perspective surgical patients will get this information is by sharing it.

Many patients are unaware that when they get a referral or ask for a referral to an ENT that they are meeting with a surgeon. And that by the time you end up there, they are prepared for you to be ready to elect for a surgery.
•There is a code of silence in medicine. Especially in the ENT community, as the procedures that they offer make them a lot of money in a small amount of time. With little to know evidence that they actually work.
•Just to shed some light to help understand. Take a septoplasty for example. If you look at the “risks” that John provided from Mayo. Perhaps it would help to understand how a “hole” in the septum happens and how bad that can be. The skin is cut and lifted away from the septal cartilage. From there, the cartilage is shaved and cut in a chisel like way. The ENT has no way of telling if your cartilage is thick enough to withstand the chiseling and rocking back and forth of this cartilage, which is what shapes and holds your entire nasal cavity. If a hole is punctured through, which is very common, this is very hard to repair. Their are only a handful of doctors who are comfortable truly repairing this. So now you are left to find someone who can help with a new issue that you never had.
•I have spoken with a very reputable ENT at Stanford whom admits that half of the time, they do not even know how or why these procedures work. He also informed me that ENTs do not fully understand how the nose even works/functions. They are trained to “remove” things that look like they shouldn’t be there. They are not educated on the inflammatory/immune response, nor the cross over of the cranial nerve innervation to the neck and face. And the last thing their are equipt to assess is facial pain.
90% of the time the only doctors that should assess/address issues associated from the neck up should be a GP/Neurologist/Allergist/Dermatologis

This selection of doctors will help get to the root cause which is systemic and not driven by anatomy.

Much of this is genetic predisposition and how your body responds systemically. It has to be addressed from the inside.

Thank you for your post. I had a horrific sinus surgery I did not even sign up for, along came alot of nerve pain and empty nose syndrome. Rinopenia may help with dryness. I'm in low light laser therapy now. There is help by stem cells but mainly out of the US. There is much research being done and Ukraine is leading at their clinic.

I had a cyst...he said 20 min. Drain it, No problem. In&out. Tiny incision.
He butchered my turbinate, and did a maxillary Antrostomy @2.5cm wide open, effecting my eye. Exposing nerves and creating chronic pain.

@emptynose-thank you for sharing. I am so sorry to hear this. These outcomes are very common but not talked about.

What were your original symptoms that took you to the ENT?
How long have you been dealing with this?

I am assuming since you know the opening down to the cm, that you must have met with a second ENT whom told you this.

In many of these cases ENTs target one thing, and do not tell you the vital areas that will be removed to get to that supposed “problem” With little regard for the outcome.

Have you’ve been referred to Neuro or Pain Management?

I had bad left ear pain that radiated.
I was at dentist office they seen a retention cyst on cbct scan, dentist said i should see a ENT. I went for multiple opinions. I now know it should have never been done in the first place. I did not have any breathing problems. He told me he did not touch my turbinate or go near my eye. Unfortunately he did in the most awful way. He used that dental CBCT scan and did not order his own. Gosh I just did not know enough, but he should have.😞

I had bad left ear pain that radiated.
I was at dentist office they seen a retention cyst on cbct scan, dentist said i should see a ENT. I went for multiple opinions. I now know it should have never been done in the first place. I did not have any breathing problems. He told me he did not touch my turbinate or go near my eye. Unfortunately he did in the most awful way. He used that dental CBCT scan and did not order his own. Gosh I just did not know enough, but he should have.😞

@johnbishop-you are very fortunate you had an honest ENT whom told you it could make your situation worse.

Knowing what I know now, and hearing from so many people who’ve suffered bad outcomes, I can’t believe these surgeries are still offered.
They should be saved only if someone has been in an accident and has broken their nose and require reconstruction.

Yes. I have experienced irreversible damage. Neurologically, functionally and systemically now.

I should mention that I only found this forum when trying to find answers online, as how to cope and manage effectively. When I reached out to Mayo Clinic and explained the issues. I was accepted through Neurology first, as the ENTs knew nothing they had do offer could help. Patients can not trust the statistics that ENTs provide as “rare” occurrences as most surgical damage or “failed” surgery is never truly captured. I know my surgeon did not acknowledge my post surgical condition and started referring me out to other specialty’s. I am just one of many cases not included in the “rare” statistics. Which is why more awareness needs to be brought to the public when looking for advice before surgery. Surgeons only report the happy outcomes to their stat sheet.

I think the ENTs at Mayo, over the years have probably seen so many cases of people from all over looking for answers from unnecessary surgeries, that they most likely do their best to persuade people as they know medical management/therapy is truly the only thing can help nasal/sinus issues. Years and years of mis-information is now catching up with the ENT community. They are just now admitting that they need to be better at understanding how immunology plays a role in the nose and that these are systemic issues and not anatomical issues. Hence all the “failed” or need for “revision” surgeries.

Neurologist is what I need. I have nerve damage that is literally killing me slowly. I don't know what to do. I come from Rochester, MN but live in Texas. As far as I know they won't help