A constant loud clicking or crunching noise in her head stumped doctors | Hacker News Reader

A constant loud clicking or crunching noise in her head stumped doctors

washingtonpost.com

32 pointsdankohn130 comments

To me the moral of the story is that you may not be able to rely on your normal doctor or specialist to give the best diagnosis and now that we have the internet it may be necessary in some circumstances to be self-informed and even find our own specialist in a certain area.

Your doctor doesn't know everything just because they are a doctor.

You don't know everything just because you found something on the Internet.

Most patients seem to either doubt themselves or doubt their doctors but rarely, it seems, both. There's a delicate balance there.

But also, there are a lot of asshole doctors who will doubt you even after you've done your homework and have a compelling argument.

Source: Was one of the ~140 people who caught whooping cough in California in 2008. I figured it out, four doctors didn't believe me.

(Yes, I was vaccinated. Turns out the effectiveness of some of the newer combined vaccines (DTaP vs DTP?) dropped off more quickly, but they didn't update the booster schedules, leading to the most recent outbreak)

And a lot of well-meaning doctors that apparently don't take the time to do things right. Have a family member with RA that was almost given an injection for another condition that is contraindicated in people with RA, and it would have happened had we not done the research online and spoken up ourselves.

Multiple times we have found ourselves being more well-informed than the doctors, and it seems things are only caught if we bring them up...

In my limited experience I've come to the conclusion that you can only trust a doctor to diagnose the most common diseases. Most GPs aren't even well versed in cancer incidence, and will dismiss cancer symptoms as something else, unless the evidence is overwhelming. But it's understandable that, when presented with a few symptoms, a doctor will be biased towards common affectations.

That leaves the burden of proof on yourself. If you feel that something is not right with your body, pester your doctor until you get a satisfactory solution. Unless you're a hypochondriac, that is.

I’m relieved that it wasn’t a cockroach this time.

What was it? I can’t read Washington post.

To Stankovic, chief of the division of otology and neuro-otology, the problem did not sound idiopathic; she suspected that Behforouz had inadvertently fractured a tiny delicate bone in her middle ear called the malleus.
When she examined the records of Behforouz’s previous hearing tests, Stankovic realized that the results had been misinterpreted. Behforouz didn’t have sensorineural hearing loss — damage to the nerve. Instead, she had conductive hearing loss, a problem with the way sound is transmitted. The difference is important because some forms of conductive hearing loss can be fixed through surgery.
Malleus fractures, which prevent sound from being properly delivered to the middle ear, are rare, Stankovic said, and probably underdiagnosed. She said researchers at Mass Eye and Ear have studied 13 patients with the fracture and “every one had the same story”: sudden hearing loss after what doctors call “digital manipulation.”

Moisture “provides the perfect pressure seal,” Stankovic said, and force can result in fractures to the bones in the ear, which are the smallest in the body. Behforouz had an additional risk factor: osteoporosis, the bone-thinning disease.

The lesson: keep your fingers out of your ears!

Thanks for clarifying. I was skim reading and assumed "digital manipulation" was something to do with digital data, maybe listening to mp3s too loud or something, but putting fingers in your ears makes much more sense in this context.

A fractured bone because she was fucking around with the pressure in her ear. I don't know why anyone would do that.

You can read the story here: https://outline.com/ZZNsFC

Possibly because she didn’t know it was possible to break a bone in your freaking ear canal by doing that.

Typical result (it is called barotrauma) is a ruptured eardrum, not bone breakage, but osteoporosis changes that.

Exactly. I was advised since I was a kid eardrums are easy to puncture so don't go manually fucking around with your ears. If I have water in an ear I'd lay on one side and let it drain.

Same here! I don't think I would have read it if not for your comment.

For others skittish about that sort of thing: she fractured a bone in her inner ear.

Very interesting article. I suffer from sudden hearing loss and tinnitus, I've visited the doctor's office and they said that there was nothing they could do about it. This was during summer and I was dealt with by a summer intern. I suspect she was not fully capable of diagnosing me properly and that I should return and try to elaborate more clearly what and how the issue did arise along with what I have read recently about this issue.

Is there anyone else who have experienced the same issue? It struck me after a (very bad) night sleep combined with too much caffeine. I became almost deaf in my left ear when I woke up and was replaced by the tinnitus after about a week and has plagued me ever since.

Working with interns at hospitals is so frustrating, when you have a real problem. W were assigned one that added zero value, and in fact caused harm by waking my kid up to do meaningless checks in the middle of the night. I snapped and told him (and his friend who was attached at the hip) to fuck off, and we didn't see him again. I know interns need to learn, but there's got to be a better way than this, seriously.

I'd appreciate replies for perspective instead of down votes

What about him was "zero value"? Why did you find the checks "meaningless"? You criticized him without explaining why you concluded the behaviour was unhelpful (and if you really did tell him to eff off, I'd say that was really unhelpful). As you say, they have to learn somehow.

I'm not sure if you've spent any serious time in the hospital, but most of the night shift seems to be glorified babysitting. The nighttime hospitalist isn't going to do shit, so if you don't have a diagnosis and treatment plan yet, you aren't going to get anything done. He want taking any notes in the exam, just disrupting sleep for nothing.

I suffer from pretty strong tinnitus.

I have also had episodes of extreme eye dryness. Furthermore, I got floaters whose onset matches my tinnitus onset. Additionally I have very mild sporadic joint pain. I'm HLA-B27+.

Altogether, this is quite obvious evidence for autoimmune arthritis or some related autoimmunity. I know this because I do autoimmune genetics research in a top lab. I've gone to a few doctors and they never even suggested the possibility of me suffering from autoimmune disease, which is scary.

I'm in the process of being diagnosed only because I explicitly decided to go to a rheumatologist myself. The rheumatologist facepalmed when he heard the whole story.

I suspect a significant proportion of tinnitus phenotypes are mild autoimmune ones.

I'm also HLA-B27+ and have psoriatic arthritis, psoriasis, occasional iritis, and fairly constant tinnitus.

I'll be curious to see what you learn.

If you wouldn’t mind, what is “HLA-B27+”?

The Human Leukocyte Antigen complex is a protein complex that immune cells use to determine self from non-self cells. There are many many many possible alleles, some of which are thought to be defective and contribute to auto-immune disorders. The most notorious (for medical students studying for standardized tests) is HLA-B27.

https://en.wikipedia.org/wiki/HLA-B27

Specifically, check out the section on disease associations.

And

https://en.wikipedia.org/wiki/Human_leukocyte_antigen

I've heard from my doctor and from other patients about cases where some steroids helped or even resolved tinnitus completely. I'm currently investigating this option.

In my case, years before my tinnitus onset, I started having a lot of discomfort on my right ear (my tinnitus is mostly one-sided, just like my floaters).

Firstly, my right ear started getting clogged with wax really frequently. Then, I developed extreme sensitivity to cold. So, cold air would give me acute ear pain.

Immediately before and after my tinnitus onset I had mild vertigo quite frequently.

Ever since I developed tinnitus, my ear feels full and clogged.

Yeah, my brother has this too for like ~10 years and the docs say the same thing, nothing you can do.

Why do you assume the medical provider you saw was a "summer intern?"

Because she said she was

I had a dislodged neck vertebrae which caused tinnitus-like symptoms.

edit: if this was recent, you should see an audiologist immediately. Google SSNHL.

it happened to me last month. Hearing hasnt returned after 6 weeks, so it's looking like permanent deafness.

The clinic I went to thought it might be an ear infection and gave me antibiotics. Didn't start the steroids until 8 days in. The audiologist said the effective treatment period for SSNHL is 2-4 weeks, with best results within 48 hours.

This is why I advocate for computer aided diagnosis. It is not useful in the vast, vast majority of the cases but when you hit the wall it is time to look at the remaining few percents.

A set of questions can help to pin point the unlikely case, like here where the link to the database of the 13 patients could have been a hint.

Now, since this is not done at scale means that there are (good or bad) reasons. I am obviously not an MD.

The bright side: next time someone googles the symptoms they'll find these articles about it

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