u/Impressive-Coat-2739

Hi everyone,

I have ENS-type symptoms after nasal surgery and a few questions for ens type patients.

Neuromodulators (gabapentin, pregabalin etc.)

Has anyone tried them? What were the results, dosage and side effects?

PRP

Has anyone tried PRP? How many sessions, results and how long did benefits last?

Cotton test & Lidocaine test

Was it worth doing? Did positive results help confirm ENS and guide treatment?

How to know if it's ENS-type
How can I tell if my symptoms are true ENS-type versus neuropathy, dysesthesia, or other conditions with similar symptoms?

Any experiences appreciated. Thanks.

Hello everyone,

There is something fundamentally wrong in how surgical decisions are made in many contexts.

I am not only referring to clear cases of malpractice or obvious gross errors, and that should not be downplayed. I am also referring to something broader: a system in which the decision to operate can move forward with a level of scrutiny that is simply not proportional to the fact that we are dealing with irreversible interventions on the human body.

What should be one of the most critical and protected moments in medicine — the decision to operate — is often not treated with the weight it deserves. There is a lack of truly independent scrutiny. There is insufficient serious and structured comparison with well-evaluated non-surgical options. There is no effective external “brake” that prevents the decision from depending almost entirely on a single clinical decision pathway.

And this is not naive. There are incentives. There are conflicts of interest. There is economic, institutional, and cultural pressure that pushes the system towards intervention. Not in a simplistic or caricatured way, but in a normalised, silent, almost invisible way.

The result is this: surgical decisions that may appear acceptable at the time, but are made within a structurally biased environment that makes operating easier than should be acceptable given the permanence of the outcome.

At the same time, there are situations where this is not only structural: there are cases of individual clinical negligence, clearly imprudent decisions, or poorly justified surgical indications that cannot simply be diluted into “clinical variability” or “complications.” In some cases, there is direct responsibility that needs to be acknowledged as such.

And this coexists with a more subtle reality: even when the decision appears defensible on paper, the framework, the level of caution, and the individual clinician’s judgement make a major difference. Depending on the doctor and how risk is interpreted, the same clinical situation can lead to very different decisions — and this fundamentally changes how the outcome is experienced.

In the end, what remains is a difficult combination: structural failures, normalised grey zones, and in some cases individual negligence that should not have occurred.

This is not a series of isolated failures. It is a structural problem of accountability.

And it is becoming increasingly difficult not to feel anger about this — both towards the system and towards individual decisions that have directly contributed to avoidable outcomes.

If anyone is aware of initiatives, campaigns, or petitions trying to expose or change these structural mechanisms, I would appreciate if you could share them.

I wanted to ask this community something that has been on my mind.

For those living with Empty Nose Syndrome, has anyone here ever pursued legal action (or seriously considered it) against the surgeon, clinic, or hospital involved?

If you did:

• What was the process like?
• Was it worth it?
• Did it help in any way (financially, emotionally, or in terms of accountability)?
• What effects did it have on you mentally and emotionally?

And for those who considered it but didn’t:

• Why not?

I’m also curious whether anyone has spoken to journalists, media outlets, or documentary makers to bring more public awareness to ENS.

Part of why I’m asking is because I sometimes feel like I’m not doing enough. I’ll be honest: I do carry frustration, and at times anger, about what happened and how life changed afterward. Those feelings are real.

But if I ever considered more serious steps like legal action or media exposure, I would not want to act from revenge or anger alone. I would want it to come from a place of accountability, awareness, and hopefully preventing others from going through the same.

That’s why I’m asking about the effects it had on you — not just the legal outcome, but what it cost you emotionally and mentally, and whether it actually helped you heal or find closure.

I’m also wondering whether to talk directly to the doctor first, but I also recognize that it would probably be very difficult for me to remain composed in that conversation because of the emotions involved.

For those who have done that, did it help, or did it make things harder?

Do you think pursuing legal action or media exposure is worth it, or can it end up causing more stress than change?

I’d really appreciate hearing your perspectives.