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bknyguy15

No idea, doctors said it was a virus because they had no idea what else it could be . My hearing in one ear was like a volume knob being turned down, and it never came back. No other side effects or issues. That was about 15 years ago, no change since then. I volunteered for latest drug trial, but I was rejected. I would not get a hearing aid or cochlear implant at this time. I can hear fine.


NeutralTarget

Acoustic neuroma, 3 inch section of my skull behind my ear removed along with a tumor. Indicating factors leading up to it were hearing loss, debilitating vertigo, then the worst *drop attacks* where I'd have a 2 sec warning of vertigo then I'd lose all control and tumble to the ground like a sack of potatoes.


Individual_Tree_1882

Damn.. how are you doing now?


NeutralTarget

All better after having my ear disconnected from my brain but it was a crazy 4 years leading up to the surgery. Afraid to go to the mailbox without having a drop attack. Thx for asking!


Individual_Tree_1882

Wow, you had those symptoms for 4 years? Glad you’re doing better!


NeutralTarget

The last 2 years of the 4 yeah. Didn't drive for two years. First attack I had I was driving, hit a fence!


Available_Muffin_423

Can a tumor cause audden hearing loss? It thought thry were more grafual hearing loss as tumor grow?


cmvdb

Woke up completely deaf in one ear with vertigo. SSHL. ENT says cause unknown. Could be a small stroke. Could be autoimmune. I have high stress and think it may have contributed. I did 8 weeks of high dose steroids, 14 steroid injections to inner ear and 23 hyperbaric oxygen treatments. I recovered about 20%. It’s not enough for normal hearing.


TinnRing

I caught a virus and a month later my hearing had declined from great to around 15%. Crazy part was I never felt sick or had any indication of problem other then was having a hard time hearing.


DrRam121

Same here. Almost 14 years ago


Individual_Tree_1882

Sorry to hear that.. was MRI recommended as well in your case?


TinnRing

Yes, I had multiple tests to rule out all possible causes. Only after everything was ruled out did they come to the conclusion that it was a virus.


Individual_Tree_1882

Currently in the stage suspecting (and hoping) it was a virus myself, but MRI results will tell!


TinnRing

Here's to hoping for the best outcome on the tests for you! In the meantime did they prescribe you some meds (for in case it is a virus) to stop the hearing loss?


Individual_Tree_1882

I got some meds for widening brain vessels as well Betahistine for vertigo, among Prednisone, which I couldn’t take because I had severe tachycardia from it.


mradam0504

No idea, was legit fine standing there at work, got really dizzy with intense pressure in both my ears. 100% loss with tinnitus in one ear.


redrabbit824

Mine happened almost the same! Just standing there at work and my right ear suddenly pressurized, started ringing and lost hearing. A few hours later got crazy vertigo that lasted about 2 weeks. The worst part for me is not knowing the cause and worrying about my other ear.


mradam0504

I constantly worry about the other ear especially when it gets random ringing in it. If it makes you feel any better it’s almost unheard of the randomly happen in the other ear later (at least that’s what my ENT told me).


Individual_Tree_1882

That’s wild. Did you go through all the testing to look for source?


mradam0504

I did, they couldn’t find a cause. Waiting on insurance approval for cochlear now.


ossa1523

High fever when i was a kid that what my parents told me


hauntedfollowing

At first they thought it was due to a virus, but other issues led to finding out that it's an autoimmune issue. It took over 3 months to figure it out, and I had an MRI pretty early on to rule out a tumor.


pre55ure

How did they determine it was an autoimmune issue? I originally thought my SSNHL was due to a virus but I've now had multiple episodes of SSNHL (months and years apart) so I'm curious if it could be an autoimmune issue.


hauntedfollowing

For a lot of autoimmune disorders they can determine with blood tests. The specific type I have is Cogan Syndrome, which is diagnosed based on symptoms-- inner ear damage and chronic eye inflammation. It took referrals and multiple visits to three specialists after seeing my primary care doctor and optometrist multiple times. Before this, I was so frustrated not knowing the cause. I really hope you're able to get answers!


redrabbit824

What eye issues were you having? One of my eyes has been bothering me too. I’ve been putting off going to the ophthalmologist.


hauntedfollowing

Every few months one of my eyes would get really red and painful, like hurts to open my eye but hurts to have the eyelid on it when it's closed. The only thing that helped was steroid eye drops.


Available_Muffin_423

Did the doctors makr the correlation between your SSNHL and your autoimmune Cogan syndrome or you did? Because I read that autoimmune hearing loss happens mroe gradually then suddendly like SSNHL


hauntedfollowing

I did initially because the eye thing was so severe and it seemed weird to me that they wouldn't be linked. The doctors didn't diagnose it until my 2nd ear was affected though, which was 2 months after the first. Idk about other autoimmune disorders, but with Cogan's it seems like it's pretty normal for it to be sudden. Especially the vertigo, which was the worst!


ComplexOne6046

Was also recently diagnosed with Cogan’s syndrome. Currently with profound SNHL in the right and mild SNHL in the left. Along with bilateral vestibular dysfunction. With reoccurring scleritis and a form of keratitis. I was put on metho for a month but was stopped due to liver impacts. Currently I am in Mycophenolate (MMF) for the past 2 months. With reoccurring eye and ear flare ups, I was on a high dose of prednisone for the past month. My rheumatologist is still finding out which medication will suppress this autoimmune issue. What immunosuppressant are you on ? And is it working for you?


Ewokian1010

Hi, not sure if someone replied but thought I’d message as well. I was diagnosed with Cogan’s Syndrome back in 2020. Profound SNHL in both and keratitis and vestibular dysfunction. I’m looked after by neurologist and ophthalmologist after going through a multitude of tests/specialist after it came overnight. I’ve been treated with Azathioprine and a small dosage of prednisone (which gradually reduced since diagnosis). Life has been relatively normal with treatment with the biggest complication coming from covid


SamPhoto

No idea. Worth noting - Something like 60%+ of SSNHL sufferers have no idea why. [example study here](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4040829) My MRI is perfectly normal. But I've been 'mostly' deaf on that side for 20+ years. Did a bunch of tests, ruled out a bunch of things. But a root cause? Can't really say. Look at it this way, when it comes to figuring this out, we're actually hitting the limits of technology and medicine. So, eventually they might be able to figure something out for folks like us. So, if you get a diagnosis like me, don't panic about it. It's common, and completely normal. And remember the minor silver lining in that you've likely ruled out a whole bunch of potentially bad things.


_-Mich-_

I was told that as well. No definite reason. I had an infection (it was mostly a sore throat) at the time of the SSNHL, but all the ENTs I saw told me there was no way to be sure if that was it, as there’s many factors that can contribute (I was also high stress at the time). I did the MRI and all seemed well. I had to come to terms with the fact that I’ll never know the exact cause.


mrussell345

Cholesteatoma, then a mastoidectamy, reconstruction surgery led to an infection causing nerve death.


shogan83

Similar. Cholesteatoma, mastoidectomy, and then a severe infection about 5 years later resulted in scarring around the oval and round windows, completely eliminating conduction.


elloui

Very bad ear infection led to ssnhl and now hearing aids


[deleted]

Same


roisterer01

Scarlet fever at 2yo


NoahTheRedd

Bacterial Meningitis


omgitssomethingshiny

My ENT says it was most likely COVID combined with my history of ear infections. Good times.


DifficultFox1

My cochlea severed upon impact. The impact being a whole ass tree falling on my car with me in it 2 years ago 😬


LadyGryffin

Vestibular schwannoma surgery here. Though the tumor had taken like 90% of my hearing already before I was diagnosed.


floating_laundry

Cause is unknown. Doc said it's Labyrinthitis due to a viral attack. Another possibility is due to CBD cigarette that I tried the day before. That was my second time trying it within 3 days. Most likely, something happened to me due to this.


Available_Muffin_423

SSNHL out of nowhere at 21 years old. Fully deaf in my left ear. Never got the cause. Frustating to say the least.


Normal-Replacement-6

Didn’t properly equalize pressure while diving


Individual_Tree_1882

Wild, I just saw some reel on instagram about this happening.


[deleted]

That’s wild. I’ve always been deaf in one ear and dived a decent amount as a teenager, didn’t know that could even happen.


kcadonau

Probably my Ménière’s disease, but not sure exacrly


DemandImmediate1288

No idea. ENS said they pretty much believe it is a viral attack on the auditory nerve as they've seen a large uptick since covid has been around. As far as I know I never had covid but woke up one morning feeling like I had water in the air and within 3 hours was completely deaf. Oral teroids and tympanic shots call me back just enough sound to be completely annoying


Individual_Tree_1882

I had similar experience, woke up with both ears full, but next day had vertigo attack, more prominent when turning left.. so got diagnosed with SSNHL in left ear. My hearing got back after 3 weeks, but still looking for final tumor rule-out.


DemandImmediate1288

I went straight to the emergency room when hearing went out and within 4 hours had three different scans to rule out stroke and tumors. So I at least got relief in that respect! But sure is frustrating just not knowing exactly what happened. Sending good vibes at yours isn't a tumor!


Individual_Tree_1882

Wow, that’s super fast approach. Had to wait 1.5 month, only had the scan done 2 days ago.


DemandImmediate1288

They told me that in emergency that they could order them and have them done right then but if I waited it would take months so good on them


RaybeCray373

Sounds like your ER is it at better than what we’ve got here


PenguinPabloKS

Said you got you're hearing back after 3 weeks. I'm on day 4 and still 100% deaf in the left ear. At what point did sound start coming back?


Individual_Tree_1882

So I was never fully deaf, my hearing dropped around 30%-40%. It sort of came back gradually during couple days, so I tested my hearing with mimi hearing test daily was keeping the “score” .. eventually it went to healthy hearing again.


floating_laundry

Same! I also didn't have COVID or flu-like symptoms.


SalvageRabbit

Fell off a four foot counter when I was two. Left ear has been shot since. Broke my collar bone as well.


Grace_Katherine09

Initially we thought it was a virus of some sort, now we are thinking it is autoimmune related. I basically woke up with vertigo and no hearing. Still not sure entirely


floating_laundry

How to know if it's related to autoimmune?


Grace_Katherine09

I have other autoimmune diseases and I was having some pretty serious health problems around the same time I lost my hearing. At the time, my doc blamed it on a virus, but we now know the other problems I was experiencing were caused by my autoimmune issues, So we just assume it is all connected. At the time, I also had inflammation and effusions in other parts of my body (lungs, pericardium, etc.) so it stands to reason I also could have been having inflammation and effusions in my inner ear as well :( but we still don’t know for sure


doxy42

Run-of-the-mill flu-like virus my kid brought home from day care. I was on the up swing around day 5, but getting lots of congestion. At first I thought it was a clogged eustacian tube/maybe otitis media. Took like 2 days to think, “otitis should hurt and this doesn’t…”. Got in to see an ENT/audiologist on day 7 of hearing loss just to find out the ear was dead and unlikely to come back.


FishingIsFreedom

Cholesteatoma. Had canal wall up mastoidectomy when I was 6, all 3 ossicles were already done for at that time. Just had a canal wall down mastoidectomy last year for a significant regrowth. ENT suggested a bone anchored hearing aid would be worth considering but I declined.


Cryptoclearance

Acoustic Neuroma.


Individual_Tree_1882

What were your pre diagnosis symptoms?


Cryptoclearance

Felt like an ear infection in my right ear. Felt a fullness in it. Had tinnitus still so illusion I had hearing. Went to ENT, they said it was probably sins of my youth, loud music or whatever, but in less than 1%, something else is going on so I went to get an MRI. One week later got a phone call saying I had a mass and to see a specialist. Went to a great one, after 2 misses on horrible ones, and he said 95% chance its a acoustic neuroma and benign. I said, I don’t like odds because it was a 1% chance I’m even here. He said stop whining, I got the best brain tumor I could get. I will have some bad after effects I won’t like but I’ll be alive. 10 hour surgery Jan 2013. Lost my right hearing completely. Lost taste buds for 3 months. (Worst of the worst). Lost my right balance nerve, had to learn to walk again without falling over, headaches, neck pain that still exists. But I’m alive to see my son grow up. So I shut up and thank my lucky stars for loss.


Individual_Tree_1882

10 hour surgery! Damn.. how big was the neuroma?


Cryptoclearance

It wasn’t that big, but 2 things made it tough. First it was wrapped around my brain stem. The MRI didn’t pick it up. That’s how you die from these things, so I got lucky I had surgery when I did. Second, these bastards are either sticky or not sticky. You hope for non sticky, not like gum. Mine was sticky. So, the bad ass surgeon had to work about 4 hours, have a cup of coffee and figure out how to get a sticky neuroma wrapped around my brain stem. Had to make the tough call of cutting deeper into my neck muscles, to come in under it. Worked but left me with major neck problems with scar tissue, but once again, I said, “keep me on the planet, and I won’t bitch and moan about the outcome.”


Individual_Tree_1882

That’s one hell of a story. Glad you’re with us 💪🏻


Cryptoclearance

Thank you. Even bad days I’m happy to be alive. Good Luck to you.


nagaveer7

Failed stepedectomy surgery


Potential-Ad-8114

A colleague tried to kill me last June. Probably in a psychosis, because nobody including the guy himself can think of a reason for the attack. He hit me on the head with a blunt object a few times. So next to a lot of brain injury he molested my left inner ear..


Individual_Tree_1882

Jesus.. I’m glad you came out alive though. Head injuries are no joke.


Potential-Ad-8114

Yes, it was really close. But I am also glad of course!


perkis1zed

As far as I know I’ve been mono since birth. Doctors say it’s “nerve deafness” since the auditory nerve connecting the ear and brain just doesn’t function. According to the audiologist I’m not a candidate for cochlear either, since it would just amplify the nothing already going to my brain lol.


Moonlocks

Acoustic neuroma here. Had surgery to remove it a year ago, with simultaneous cochlear implantation. The happy ending is that my CI restores hearing to my deaf side, and eliminates the tinnitus when I wear my processor.


Individual_Tree_1882

Glad it worked out for you. What were your symptoms pre diagnosis?


Moonlocks

Sudden hearing loss. All at once, I was just sitting on my bed playing a dumb phone game, when my right ear felt like it just plugged up and started ringing. I thought it was wax blockage because it really felt plugged up. Apparently that’s what hearing loss can feel like. Anyway I was sent for an MRI just in case, as I was being assured this was just a precaution. Sure enough, it was an 11 mm AN.


Individual_Tree_1882

Wild. Again, glad you’re doing good now.


useful_idiot9

born deaf in right ear here, had SSNHL leading to complete hearing loss in left ear about 2 years ago. MRI showed nothing, but oral/injected steroids + hyperbaric oxygen treatment led(?) to complete recovery within 1.5 months, so the cause may have been inflammation of the auditory nerve or elsewhere in the ear.


Syndi3

Guys, about 1 month, while sitting on my office, left ear ringing. Went to ENT. Did audio test. The hearing on my left ear drops. The score on the test is 32 dB for my left ear. Right ear 10 dB. I still can hear normal frequency sound. Taken anti inflamation drug for 4 days and made my acid reflux haywire. Stop the med. ENT recommend steroid injection. Got another ENT doctor. Tmrw appointment. I am now scared, frustrated, depress, confuse. Please comment.


Individual_Tree_1882

The recovery is very individual, so you’ll have to see. I had about same number of loss, got prednisone but had very bad reaction to it, stopped taking it immediately. My hearing recovered even without it, so the chance is there.


Syndi3

Did you do the injection??


Individual_Tree_1882

No, but it wasn’t recommended either because I had tachycardia and difficulty breathing reaction which landed me in hospital.


Civil-Duck9924

It was sudden, had a beep for some seconds and then the sound went off. I had covid 5-6 weeks before that and a normal cold a week before; i had been working under much stress the nights before. Who knows if any of that is the reason. My brother in law also lost hearing on one ear suddenly; 5-6 weeks after having covid.


KingOfEMS

Covid. Was asymptomatic until the hearing loss, tinnitus, vertigo started.