
A constant loud clicking or crunching noise in her head stumped doctors - dankohn1
https://www.washingtonpost.com/national/health-science/she-had-a-loud-nonstop-crunching-noise-in-her-head-that-doctors-couldnt-quiet/2018/08/17/7afdc19c-852d-11e8-8f6c-46cb43e3f306_story.html
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ilaksh
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.

~~~
colechristensen
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.

~~~
ohazi
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)

~~~
kup0
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...

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user982
I’m relieved that it wasn’t a cockroach this time.

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

~~~
vatys
_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!

~~~
m-i-l
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.

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Codesane
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.

~~~
bagsvaerd70
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.

~~~
spdustin
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.

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

~~~
riahi
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](https://en.wikipedia.org/wiki/HLA-B27)

Specifically, check out the section on disease associations.

And

[https://en.wikipedia.org/wiki/Human_leukocyte_antigen](https://en.wikipedia.org/wiki/Human_leukocyte_antigen)

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BrandoElFollito
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.

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21
The bright side: next time someone googles the symptoms they'll find these
articles about it

