Is Empty Nose Syndrome Real? If Not, Why Are People Killing Themselves Over It
buzzfeed.com
buzzfeed.com
A week after the surgery when the splints came out it felt like a draft through the center of my head. Maybe people who have always been able to breathe through their nose are accustomed to this, but for me it was entirely foreign. On top of this, the inside of my head felt cold; headache inducing cold. I can imagine this could get interpreted a variety of ways, especially for people who have never had those senses developed at all.
It doesn't make his suffering, or the suffering of patients with similar ailments, any less real or traumatizing. Its effects aren't any less tragic. However, fundamentally, there isn't really a great model of care for people who won't or can't believe that their ailment is psychological and requires psychological treatment ("But he didn’t stick with them or the psychologist. He felt like no one was listening to him. His head wasn’t the problem — someone needed to fix his nose!")It doesn't help anyone to keep making up new diagnoses for every manifestation of depression and anxiety, just so people can feel "acknowledged" - and validated in not treating the underlying issue. So many of these emerging conditions ultimately show little response to their supposed underlying mechanisms, and normal responses (for depression and anxiety) to anti-depressants and cognitive behavioral therapy. (" He spent most of his time alone in his bedroom with a humidifier. After doctors treated him with cognitive therapy and an antidepressant, many of his symptoms cleared up.")
Of more interest to me, personally, is the frequency of post-surgical anxiety. I've seen it in enough patients to know that it's not restricted to turbinate reductions, it doesn't always correlate to pre-existing mental health problems, and that it can often resolve when the surgery is "fixed" (e.g., removing lap-bands). This is a general phenomenon that receives little attention, causes a lot of suffering, and would help a lot of patients if we understood it better. Chasing down rabit-holes by pretending the anxiety is something /else/ doesn't help anyone.
How do you explain the fact that this only appears to manifest when turbinates are reduced, and not as a result of any other surgical interventions on the nose?
Would you similarly dismiss phantom pain and prescribe anti-depressants and CBT? https://en.wikipedia.org/wiki/Phantom_pain
The parent comment wasn't dismissing it. Quite the contrary. You, however, do seem to be dismissing it, by saying "nothing but anxiety". Anxiety is very real.
>Would you similarly dismiss phantom pain and prescribe anti-depressants and CBT?
Pain can quite often be caused/exacerbated by psychological factors. Perhaps you should google "central sensitization". The parts of the brain that registers pain (the insular cortex and ACC) are also responsible for attaching emotional feelings to pain. In some cases (e.g. fibromyalgia) the pain persists in the absence of any physical pain signal.
More specifically, if the physical sensation is caused by something physical, then this is really quite dismissive (from grandparent):
> there isn't really a great model of care for people who won't or can't believe that their ailment is psychological and requires psychological treatment
Maybe it's your problem that you won't or can't believe that the ailment might not be psychological.
> You, however, do seem to be dismissing it, by saying "nothing but anxiety". Anxiety is very real.
I am not dismissing anxiety in the least. I know more about it than I would like to, and yes it is very real.
If you think diagnosing something as anxiety is the same as dismissing that person's experience and suffering and need for help, you're part of the problem.
Your entire argument only works if you accept the premise that this condition stems from anxiety alone. Since you have accepted this with what appears to be near certainty, then of course the rest of your argument makes sense to you, and your diagnosis of anxiety probably feels compassionate and sensitive.
To a person who does not share your confidence that anxiety is the only factor in play here, your dismissal of other possible factors is crazy-making.
Just acknowledging that there might be a factor here we don't fully understand would be enough. It's fine if anxiety is the best diagnosis and treatment plan given what we know right now. But the certainty that it's the entire story is off-putting.
You said yourself that depression/anxiety for physical symptoms are "diagnoses of exclusion, coming long after everything else has been exhausted." They are a fallback when you don't have another explanation. So why do you present a fallback diagnosis with certainty?
Nobody is saying that at all. The physical causes should be investigated, obviously. Suggesting to the patient that it might be psychological is not "dismissing" anything. Of course, it is true that most patients are vehemently opposed to the idea of psychosomatic pain, as well as many/most doctors. John Sarno's books are a fascinating read.
In this case there doesn't appear to be any pain, or physical sensation at all. You can't sense a "hole", any more than you can sense inflammation or the like.
On the other hand, if you want a really mind-expanding read about the fuzzier edges of medicine, you might want to read Daniel Moerman's "Meaning, Medicine, and the 'Placebo Effect'." Don't let down your skeptical guard, but it's worth a read.
But there's some truth to that idea, just because you think you know what's happening to another person doesn't mean you actually do.
By all fairness if you haven't had turbinate reduction it's going to be very hard to think you're suffering from a condition that is said to be caused by turbinate reduction.
In all fairness, did you read the article? The patient suffered the symptoms first (before ever hearing of the syndrome), then went looking for an explanation, then found a syndrome exactly matching his symptoms linked to turbinate reduction, thought that was weird because he didn't think he'd had that, and only then saw "turbinate reduction" in the records from his surgery.
I had anxiety with panic attacks that had came with (for me) real physical (pain) experience for a few years. so I think that those people really need help, but not in the form of creating new disease-names for them. They need psychological treatment and maybe some physical 'placebo' treatment/surgery to cure them.
I got cured by telling myself over and over everything is okay, which felt like lying to myself.
Additionally, more anecdotally, have you ever visited the "alt med" internet? It's literally swarms of people with anxiety and depression obsessing over how random medical minutiae (related to their dental work, their lap-choli, etc.) explain their set-of-symptoms-that-are-typical-anxiety.
These "similar sets of cases" aren't hidden. They're ubiquitous. They just set themselves as opposed to (1) the idea that they might have a psychological illness, and (2) anything that smacks of "establishment" medical care (which they both view with anxiety and with disdain and hurt, because it was that establishment that does not take their complaints at face value.)
And to be perfectly clear:
>> he didn't think he'd had that, and only then saw "turbinate reduction" in the records
So what? That's just something that was in the article. Who knows what really happened. Maybe the guy knew and he forgot about it (it's called cryptomnesia). Maybe the article misreports it. Maybe, who knows what. You can't draw firm conclusions by something someone said once.
Now can I check with you whether you read what you wrote? Because it didn't make any sense at all. How can anyone who hasn't had turbinate reduction think they have a condition that is caused by turbinate reduction? That does not compute.
The only people in this thread who are drawing firm conclusions are the ones expressing the firm conclusion that Empty Nose Syndrome is 100% attributable to anxiety.
I certainly don't claim to know what is going on. But I am not at all convinced by the people who are confidently dismissing the possibility of any other causes.
> So what? That's just something that was in the article. Who knows what really happened.
Even if I grant you that he might have unknowingly remembered that his surgery included turbinate reduction, that doesn't matter unless he knew about Empty Nose Syndrome before he experienced the symptoms.
> Now can I check with you whether you read what you wrote? Because it didn't make any sense at all. How can anyone who hasn't had turbinate reduction think they have a condition that is caused by turbinate reduction? That does not compute.
Here is why it computes. Empty Nose Syndrome, as described from various sources, has a common set of symptoms and is linked to one specific surgical procedure. Now let us suppose your theory is correct and it is caused solely by anxiety focused on the surgical intervention. If that were the case, you would expect many people to express this same set of symptoms from other nose-related surgeries. You would expect that the description of Empty Nose Syndrome would then expand to be linked to a number of different nasal surgeries. After all, if these patients are hypochondriacs whose anxiety causes physical discomfort, why would this anxiety be limited to only turbinate reduction?
Now maybe your theory is that awareness of the syndrome itself creates the power of suggestion that causes the patient to feel these symptoms. And without that and the intellectual link to turbinate reduction, they will not experience the symptoms. Now that theory is completely contrary to the story given in the article. But besides that, how under your theory did the syndrome begin? If it takes the power of suggestion to create the sensation, how did the first people experience it?
Anything that created this syndrome out of thin air for turbinate reduction should be able to create it out of thin air for other nose surgeries. And yet for 15 years it has continued to be linked specifically to turbinate reduction. Why?
> Here is why it computes. Empty Nose Syndrome, as described from various sources, has a common set of symptoms and is linked to one specific surgical procedure. Now let us suppose your theory is correct and it is caused solely by anxiety focused on the surgical intervention. If that were the case, you would expect many people to express this same set of symptoms from other nose-related surgeries. You would expect that the description of Empty Nose Syndrome would then expand to be linked to a number of different nasal surgeries. After all, if these patients are hypochondriacs whose anxiety causes physical discomfort, why would this anxiety be limited to only turbinate reduction?
But these things tend to self limit. Ann says she has chronic fatigue. She undergoes some psychological therapy. She gets some relief from her symptoms. A bunch of people in the CFS organisation now shun Ann, and tell her that she didn't have real CFS.
Don't get me wrong, I understand if investigating the direct symptoms might not be practical under some circumstances. But saying it's useless and "pretending" goes too far IMO.
> But these things tend to self limit. Ann says she has chronic fatigue. She undergoes some psychological therapy. She gets some relief from her symptoms. A bunch of people in the CFS organisation now shun Ann, and tell her that she didn't have real CFS.
I don't see how this scenario answers my question. Your story suggests that their is social pressure to resist the idea that the condition is treatable. It doesn't explain what would prevent an expanding scope for where the condition is identified.
I'll give you an example. Where I come from, people believe in the Evil Eye: that if you stare at someone or something with a bad intention, if you're jealous etc, you can cause real, physical harm to that person, thing etc.
I've been accused of it a couple of times (I got scary eyes). Once a friend got a headache and then called her mom and asked her to say a special prayer people say that supposedly banishes the Evil Eye, then made a big todo about how a certain person always gave her the Evil Eye (it didn't take rocket science to figure out she was talking about me).
So, my friend obviously had an ailment, if you like: her head hurt. She felt bad, she blamed it on me. It helps that we were having an argument at the time it happened. We often had arguments. She often had headaches. She believed I was giving her the Evil Eye.
You can take the events themselves and try to reason about them. Did I give my friend the Evil Eye? Was the headache unrelated? Which happened first? What tells us they were cause-and-effect? What tells us they weren't?
Except, there is no such thing as the Evil Eye and you're basing your whole reasoning process on empty air- and convincing yourself that you're on firm ground.
The thing to ask is not "did I give my friend the Evil Eye?". The thing to ask is "is there such a thing as the Evil Eye?". Equally, you should be asking whether ENS is real in the first place. But you jump immediately in discussions of cause-and-effect, symptoms and accounts. If you're already convinced that ENS is real, those are not that important. But you have to ask yourself: why do you think it's real? Just because people say they have it? There doesn't seem to be anything else at the moment.
Like others say, I don't doubt for a moment that people suffer from - something. But I'm not convinced that it's what they say it is. I don't blame people for going mad about it, I do blame their doctors for not listening to them, but I don't blame ENS, because it sounds like the Evil Eye, or Morgellon's or whatever similar crazy thing people latch on to in their desperation.
And of course the worse thing is: by latching onto ENS (or whatever), people deprive themselves of the chance to have what ails them treated.
I don't know how many times I have to say it. I don't claim positively to know it is real.
I'm going to write it just once more so that hopefully you don't miss it this time: I don't claim to positively know that ENS is real.
Here is what I do know. Nobody on this thread has presented enough information to categorically deny that it exists. So if I see people who appear to be doing that, I'm going to call them on it.
That's not how it works. The side that makes a claim has to show that it's real. Everyone else has every right to doubt the veracity of the claim until that time. Otherwise we'd all be endlessly bogged down in pointless conversations.
Anyone can come up with a wild, fantastical idea. That doesn't mean everyone else has to waste their time trying to disprove it.
Btw, if you've made such a big todo just because you don't get that, I'll be a bit upset 'cause I've been wasting my time here.
The idea that a person's physical symptoms might have a physical cause is not wild or fantastical. By Occam's Razor it is (absent other information) the most likely explanation.
This doesn't mean nothing is there, of course, but mystery illness is rare and anxiety is very common. It would be bad medicine to overlook the prevalent condition that explains your symptoms.
Second, post-surgical anxiety is quite common for a variety of conditions. I actually addressed it at the end of the post I suspect you didn't read. You presume this is somehow unique to turbinate reduction; that is an untrue assumption.
Are all medical professionals (which I presume you are) this condescending, or just the ones on this thread?
> Anxiety is well known for significantly reducing the threshold for attention to stimulus: someone having an anxiety attack can feel things without somatic prompt, or they can feel something horrible with an underlying somatic prompt that, if they weren't having an anxiety attack, they'd never have even noticed.
Right. So how do you know that this isn't the result of a real physical stimulus that manifests primarily in anxious people because they are more sensitive to that stimulus?
How do you know that anxiety/depression are the "underlying issue", and not merely something that surfaces/amplifies the true underlying issue?
Well, there is good evidence that both antidepressants and CBT work for phantom limb pain, so yes...
Phantom Limb Pain: Mechanisms and Treatment Approaches, Subedi et. al., 2011
I'm not saying it's an unreasonable hypothesis, but how can one have enough confidence in it to abandon the search for organic causes? -- Particularly when, if there were an organic cause that therefore got overlooked, the cost to the patient would be very high.
But though the article doesn't go into this, it's hard to imagine that the doctors who consider ENS to be probably psychogenic haven't attempted to treat it with antidepressants etc. If that had worked in all cases, Dr. Houser wouldn't have had to develop an implant to mimic the lost turbinate, and indeed, this article wouldn't have been written at all.
So we have more than a little reason to think that ENS doesn't always respond to psychiatric treatment -- I'm sure there's more written about this if we cared to dig it up -- and proves resistant often enough to make at least a few doctors think there's something else going on. And then arkades waltzes in here and dismisses all of that.
Beyond that, this is an obscure condition; this article may in fact be the most substantive thing ever written on it for a non-medical audience.
2) Anxiety is difficult to treat even in people who believe they have it and are committed to treatment; it's not meaningful to say "doctors who consider ENS to be probably psychogenic haven't attempted to treat it with antidepressants." The article itself leads with a number of ENTs saying it's psych and not seeing the patient - because he needed to go to see a psych, not an ENT, and he /refused/ to go. He eventually got brief treatment, and bailed, because he was never actually convinced it was anxiety. There was only one other example of a patient in the article who was treated for psych., and that patient's symptoms resolved.
You're assuming that these patients get regularly treated for psych disorders, and that therefore the persistence of this meme indicates it's not psychogenic. That, despite the fact that many of these patients refuse to believe they have a psychological disorder, and thus refuse to seek or continue treatment for that disorder. You, in fact, make this assumption despite just having read an article that stated repeatedly that he had pre-existing and untreated anxiety; that he went to multiple ENTs and got told "it's psych" but avoided going to a psych for it; and when ultimately he admitted himself for psych care, he bailed after literally a couple of days because he was convinced the problem was his nose, not his mind.
Somehow, despite literally reading an entire biography of "man with anxiety gets surgery, blames anxiety symptoms on surgery, avoids all psych care," you can still make an argument based on the assumption that these patients are getting adequate psych care, and thus we ought to rule it out.
But, hey, no. Let's ignore the disease that has an 18% prevalence among US adults and accounts for all his symptoms, of which he has a history of even pre-dating the surgery, and instead suggest that it's some rare new disease that just happens to overlap completely with anxiety symptoms.
You're overstating my position. I'm saying the question deserves further investigation. You seem to be claiming that it's settled.
My mistake.
> You seem to be claiming that it's settled.
No. There are doubtless many rare variants of human ailment we haven't understood or discovered yet. Literally, you could come up with at least one ailment for every enzyme and cell-surface molecule on the human body, at least.
My issue is that every few years there comes up a new anxiety/depression fad: some subset of folks with anxiety and depression with attribute it to some new undiagnosed condition (almost always musculoskeletal), and whip up a frenzy.
Is it possible that there are these large numbers of usually-musculoskeletal rare disease variants that all happen to look like anxiety and depression?
Well, yes, there could be. But considering how woefully under-diagnosed and under-treated mental health is in this country, and that between anxiety disorder and MDD you have a twelve-month prevalence in the US of >20%, you are far, far, far more likely finding people with anxiety/depression and a dollop of either denial or misunderstanding[1].
All of medicine comes down to the Bayesian discipline of figuring out what the most likely cause of an issue is, and collecting evidence to support/disprove that until it's no longer the most likely cause, or until the ordering stops changing. That's it. Jumping down the list is medically irresponsible. Every treatment, at that point, is unethical: you can't justify cost vs. benefit of treatment benefits and side-effects when there's every likelihood the patient doesn't have that rare thing.
So, before inventing new diseases every handful of years, we need to stop and say "is there any good evidence that this is a 1/1,000,000 new illness, vs. the anxiety/depression for which there's a >20% chance it is?" In this case, the sum total of evidence for novel disease amounts to the possibility of "possible injury to nasal sensory neurons creates a little numbness in the nose; subject of anxious obsession by pts w/ anxiety."
I don't argue this because it amuses me to say "no, silly rabbit, you're not allowed to have your own new disease." It's because these people are suffering terribly, in dire need of help, and when we expend our resources chasing new diagnoses (in the absence of good reason to believe there's a new illness), we're "validating" them at the expense of actually helping them.
[1](Yes, patients with anxiety can just genuinely not understand they have it. Anxiety can come on as strictly somatic symptoms, and the common layperson can rationally say "I don't feel anxious or panicked at all; I'm just having trouble breathing. Non-sense!" It's a poorly named disease.)
Can you see the difference between the two?
The first I would paraphrase as: "The patient refuses to accept that his condition is psychological, and we do him a disservice by validating the idea that it might not be."
The second I would paraphrase as: "While there is always the possibility that this is a new condition we don't yet understand, statistically speaking it is far more likely to be psychological. Given finite resources, diagnosis and treatment for depression/anxiety is by far the best bet for giving the patient real relief."
To me the certainty of exclusion in the first message just immediately sets off alarm bells.
"This person has X" most of the time means "X has a strong statistical advantage in explaining this patient's symptoms, so we're going to pursue treatment for X until accruing evidence suggests we shouldn't." I guess that's not always true, given a few things that exist by definition, but it's mostly true.
And that's generally good enough, since... well, statistical masses tend to obey statistical properties.
I don't know if I agree with this, though:
> [T]hese people are suffering terribly, in dire need of help, and when we expend our resources chasing new diagnoses (in the absence of good reason to believe there's a new illness), we're "validating" them at the expense of actually helping them.
Was trying out nasal implants on ENS patients "validating them at the expense of actually helping them"? Because the implants apparently turned out to help in many cases.
And: what constitutes good reason to believe there's a new illness? That's a hard question, which I'm sure can and will be debated forever. But I think that the condition turning out to respond to a novel treatment -- like nasal implants, in this case -- has to be considered some degree of evidence that there's a novel illness.
If I broke my leg I'm sure I'd appreciate an Ativan but I'd really need a splint.
With enough morphine you wouldn't even care about a broken leg.
To quote from the article:
> “We detected a statistically significant central location in the nasal airway that swells in the CT scans of ENS patients, but not in any control patients,” Nayak says of the soon-to-be-published study.
That doesn't sound psychological to me.
If the ailment is exclusively psychological, then presumably you believe this would hold even for a sham surgical intervention. E.g. you tell/convince the patient it's been removed but it's still there, and they get better. Is that the case? Otherwise it sounds like a mixture of physical and psychological, and you are being overly reductive.
I feel like I need to blow my nose all the time and it drives me crazy sometimes. It gets worse when I have a flu. Sometimes it even bleeds a little, like it's irritated.
My family thinks I'm crazy so I stopped mentioning a long time ago, and one of the doctors even laughed at me.
With a Face and Jaw CT they would be able to walk you through it all visually (ask how much it will cost up front though, it varies a lot).
I also checked my lungs and everything was fine.
It might be related to a mental disorder or something. I have anxiety and maybe other stuff that I never bothered to fix.
> No one knows for sure why some turbinate reductions result in ENS and others don’t, but there are currently two prevailing theories. Houser’s theory argues that for ENS to occur, turbinate tissue must be removed or damaged, and then the sensory nerves in that area must regenerate poorly. Some methods of turbinate surgery can damage the nerve-rich mucosal layer more than others.
And regardless of the physical situation, this guy most definitely had serious psychological problems.
To be clear, for > 6 months and 4 appointments I was told I was fine. I finally think what I have was an auto-immune disease which was what the 2nd ER doctor I saw thought my symptoms were, and her tentative diagnosis. Obviously, she could only run preliinary tests because if she ran the confirmation panels...well...she would have to follow up with me and that isn't her job.