I had a lot of people in AskReddit asking me to do an AMA about my experience losing and regaining my hearing! Proof is coming, I'm just digging out my case file. (PS - That's definitely supposed to say IAmA sorry :s)

PROOF: My MRI results

Here's my story!

Ever since I was a kid I've had a funny jaw thing; it started with an underbite, then a crossbite, then an open bite. Nobody was really sure what was happening, but it was attributed to growing. No big deal. Everything was peachy until about the 5th grade when I got an ear infection.

The infection cleared up with antibiotics... until I got another infection, and another and another and another. I was pretty much on a constant stream of antibiotics for about 6 months. My ears would ache and I started getting terrible headaches - they were so bad that sometimes I'd just put my head down and zone out. This tendency made it difficult for anyone to pinpoint just when the hearing loss began. A teacher eventually called home to tell my parents I was a daydreamer. While that's partially true ... I just couldn't hear!

Eventually, it got to the point where I was pretty well stone deaf. If you shrieked in my ear I'd potentially hear something, but likely not. My parents took me to an ENT who, for two years, said nothing was wrong and I would grow out of my deafness. I had weekly hearing tests for two years until we got fed up with the madness and sought a second opinion.

Within 10 minutes of my new ENT examining me, he concluded that I needed emergency surgery on my ear drums as they were at risk of bursting. It turns out that massive amounts of fluid from the infections had built up behind my ear drums, preventing them from vibrating... I was in surgery two days later at the age of ~13ish. They punctured my ear drums and inserted drainage tubes that stayed in for 5 years (for most people that get these inserted they stay in for ~6 months). I can now hear again!

In the last year we've discovered that my hearing loss is attributed to Degenerative Joint Disease in my condyles (jaw joints!) As it turns out my bone had been eroding to the point where my jaw joints were pinching off my eustatian tubes in my ears so that they couldn't drain the infected fluid.

My degenerative joint disease has led to other problems such as posture, breathing, etc. All in all my case is very rare as most people in my situation with DJD have excruciating pain whereas I do not... my aesthetic appearance is generally not affected and I'm pain free! I just got the short end of the stick being deaf and all.

Please, AMA!!!!

EDIT I totally forgot about this, but if anyone is interested in my DJD you can visit my blog www.breakmyjaw.blog.com for blow-by-blow action. I haven't updated in about 2 months but it has details of my gum and bone graft on it.

Thanks for the kind thoughts and questions everyone, you're wonderful!

Comments: 445 • Responses: 89  • Date: 

skatefrenzy103 karma

Could you hear in your dreams?

vivereloud61 karma

Yes - I was born able to hear and grew up with sound. The ability to hear in dreams was one of the small reliefs!

FuckingHelenKeller82 karma

I'm glad to hear you can hear again. Congrats! Now I'm going to go sit in a corner and eat chocolate.

vivereloud56 karma

Can I have some??

inte1ati41 karma

Relevant username....

vivereloud70 karma

Holy shit I didn't even see that. I should groped her face I hope I didn't offend her.

KendallBird66 karma

How did going deaf affect your life? Did you become depressed or anything? Just breaking my ankle and being on crutches for a summer had me super miserable, I couldn't imagine living without hearing for two years.

vivereloud128 karma

I like to think it impacted my life in a positive way. It sucked in the aspects that playing music and soccer and dance (which I all continued to do!) were MUCH harder, but it made me a tougher person. I was young and resilient which helped - I'd say the DJD has made me more depressed than the deafness.

Because I had to go through that rough patch I'm very inclined to help out other people whose handicaps are not fixable as mine was. I volunteer to play piano in a nursing home now.

KendallBird28 karma

Thanks for answering, your story is very inspirational and you seem like a really strong individual.

vivereloud25 karma

Thank you :)

crocsalad50 karma

Hey there, so glad you're able to hear again. My question is: what did you do to communicate while you were deaf? Did you learn sign language, learn to read lips, etc?

vivereloud118 karma

I learned how to read lips very quickly. When I first noticed I couldn't quite hear as clearly as everyone else I was embarrassed that I would look silly... so I started staring intensely at people's faces.

With practice and no other option, reading lips is quite easy! I'm still able to do it a little, it's a great party trick.

crocsalad42 karma

I'd always imagined that reading lips is immensely difficult. I think I remember trying it once by plugging my ears and trying to decipher what my Nonna was saying. Mind you, it was Italian so it might have made a difference.

vivereloud71 karma

It would seem that way, but when it's the only thing you can do you pick it up VERY quickly. I guess its just like how when I see someone with no arms using their toes to do stuff we would do with our hands ... it looks crazy difficult, but when it's all you've got to work with it's pretty easy to catch on to.

I'm Italian also! So you can only imagine how much yelling was happening while I was deaf.

LitAFartOnce12 karma

Did you ever have to read the lips of a southerner? I've heard they're difficult to read because they don't move their lips as much.

vivereloud46 karma

Never came in contact with a southerner while I was deaf... I'm in Canada!

Swaggin_2339 karma

What did you do the first time you could hear again? Did you listen to music? Did your taste in music change? Were you surprised to hear voices again and did they sound different (especially your own voice)?

vivereloud119 karma

I started to cry. I was in the recovery room and I could hear a nurse stacking chairs and I just burst into tears. Then, I asked for water and she said no.

My taste in music hasn't changed, I'm still very into piano... in terms of pop music it absolutely has but thats related more to growing up I suppose.

Ah, the voice thing. Put your fingers in your ears and talk... notice how you can hear your own voice but not much else? that's what it sounded like whenever I talked... I could hear ME clear as day and nothing else. I was sick of my own voice by the time surgery came around.

musicguy201321 karma

Why'd she say no???

vivereloud42 karma

Something about it being too soon after the anesthetic or some crap like that. I was damn thirsty.

atsirktop30 karma

1.) When you regained hearing, was it gradual or was it like someone turned the mute button off on a TV?

2.) What was it like to be able to hear again?

3.) Did you learn sign language? If so, how long did it take for you to pick it up?

vivereloud47 karma

I woke up from surgery and it hit me like a ton of bricks ... like standing in a silent room in front of a speaker and then having it suddenly turned on full blast. It hurt, actually.

It was wonderful to hear again! But to me, everyone was yelling.

I learned to read lips very very quickly. I did pick up a few sign language tidbits but communicated with teachers, friends and parents through reading lips. If you wanted to talk to me, you'd have to look at me.

sharkifyification13 karma

Were you ever able to get a hint of what someone was saying if they were facing to the side/profile of you?

vivereloud17 karma

Not really... I'd probably be able to get the gist of a conversation but not much more than that. Reading lips is a combination of facial expressions + tongue movements + lip movements, so only having bits and pieces would be tricky.

cochinoprase8 karma

Amazing story :) I'm wondering, without hearing yourself how were you able to control the level of your own voice? Did a lot of people tell you that you were yelling?

vivereloud26 karma

I guess i just judged by the amount of air I was forcing out? I tried very hard to talk what I thought was quietly and then based my volume out of people's expressions to the volume. But then again, I'm Italian so if I were shrieking it wouldn't have been too strange.


How come it took so long for you to get a second diagnosis? It's ridiculous that the doctors let you stay deaf for so long with an apathetic attitude towards your situation.

Also, I just realized that ENT means ear, nose, and throat doctor.

vivereloud14 karma

The first ENT was adamant I would grow out of it. Ear infections are very, very common in kids, but it was my jaw that made this case so very different. I guess he just wasn't willing to admit that there could be another cause behind it. I hate that doctor, but I suppose he's human.

Ah yes, ENT is an ears nose throat specialist... somebody here made a drug reference and I was confused.

ShenanigansFarva15 karma

Did you go back to the original guy and say "NEEDED EMERGENCY SURGERY. THANKS FOR NOTHING CHAMP!" because I was absolutely furious reading that for you, I can only imagine what you must have felt!

vivereloud16 karma

Haha, I wanted to for awhile. What I've learned through all of this is that doctors can be silly and neglectful, but holding onto the resentment isn't going to a) fix the past or b) fix the problems I'm living with now.

ShenanigansFarva6 karma

That's true! Glad you're healthy now, and you seem to have an awesome attitude about everything. Great AMA :)

vivereloud2 karma

Thanks! I'm healthy within reason, the Degenerative Joint Disease is my battle right now. Currently consulting with a surgeon in Texas to see if they should replace my joints (scary!).

ShenanigansFarva1 karma

Geez what would that even entail do you know? Have you been able to talk to someone with this same disease?

vivereloud1 karma

It is a very uncommon procedure only done in the last 20 years. Luckily I've found someone who's had her procedure done by the same surgeon. Essentially it entails removing the "ball and socket" of your jaw joint and replacing it with a metal prosthesis. Obviously this is a huge surgery as they're removing a chunk of bone that is vital to, well, keeping your face on.

This girl I talked to recommended holding off the surgery until if/when I start to develop severe, life altering symptoms - she was unable to eat, talk normally, live without headaches, etc. Because I am able to have a completely normal life, I'm not about to put myself through a hellish 14 hour operation + 6 months recovery. If the time comes that I cannot live a normal life without it, then I will have the surgery. Until that day, my joints can breathe easy.

sherideswildhorses2 karma

Have you considered suing the original doctor?

vivereloud2 karma

Technically wasn't malpractice, and I didn't really suffer a loss... I mean I did regain my hearing eventually. Had my ear drums ruptured or cause irreparable damage I likely would have taken action. I'm in Canada so our legal system is slightly different.

gingerohs2 karma

Audiology student here - Ear infections are incredibly common for young kids, not really 12 year olds though and DEFINITELY not to the point of complete hearing loss. That ENT should have been more proactive.

Question: did they ever run immitance tests on your ears? Put in a probe that puts a little puff of air in to test your ear drum movement? That would give instant insight on if there was lots of fluid

vivereloud2 karma

Yes, I had immitance tests done almost weekly. I had the "push the button when you hear the noise" tests, and lots of tests on my ear drum movement. They were all well aware of the amount of fluid I had built up behind my ear drum... unfortunately the just didn't take action on it until I switched ENTs.

oxyfukincodone17 karma

How exactly were able to distinguish between different notes when playing piano based on feel alone? Could you feel when you made a mistake?

vivereloud44 karma

I've been playing piano since I was 4 or 5 years old, so I had been playing about 8 years by the time I went deaf... I knew the sounds of the notes and played mostly by muscle memory and singing in my head, much like Beethoven did (yep its a real thing!) As long as you can hear it in your head, you can play it!

I still play like this to this day :)

Waterrat12 karma

As long as you can hear it in your head, you can play it!

This is true...And I used to tell this to people when i ran a dulcimer club.

vivereloud12 karma

I can't say I've ever met anyone who could play the dulcimer.

Fellatio_Del_Torro15 karma

Do you look at music and sounds in general in a new light, so to speak, now that you can hear again?

vivereloud28 karma

I would say I've learned to appreciate classical music much more than I previously had - the intricacies of the composition stood out to me much more because I was so hungry for sounds.

Similarly, when I listen to modern music, I like to listen to it 10 times over so I can focus on each individual aspect of the song - the vocals, the drums, the bass, the guitars, etc.

Ganthrithor14 karma

Did your four other senses improve noticeably as a result?

vivereloud16 karma

I didn't need my glasses during that time, but I didn't have horrid vision (maybe a -1.5) at the time. I'm now a -2.5, boo hoo.

Pa12513 karma

Very interesting to discover that your deafness was partially attributed to the pinching of your eustachian tubes! The only reason I'm familiar with this kind of knowledge is because I'm a SCUBA diver.

But, anyways. Here's my question(s). How will your degenerative joint disease affect you in the future? Will you be affected by this for the rest of your life? Will it prevent you from maybe doing certain things in the future?

My parents took me to an ENT

Totally thought you meant a stoner when I first read this, made me chuckle. :)

vivereloud10 karma

Its tough to say how my DJD will affect me because my case is so abnormal... I have none of the big symptoms, like pain, aside from the flattening of my condyles. Its taken them almost 5 years to diagnose me. I could potentially be in extreme pain in the future, requiring a total jaw joint replacement, but I will cross that bridge when I come to it!

A joint replacement would affect diet, ability to go out in the cold, etc etc. but so far I am free to do as I please, pain free, thankfully.

Putnum11 karma

Did it hurt?

vivereloud4 karma

The surgery or being deaf? No to both.

Putnum20 karma

No. When you fell from heaven?

vivereloud7 karma

HAHA, unexpected - thanks for the laugh! :)

fedora_swag_4_jesus9 karma

Would you rather listen to 100 duck sized horses or 1 horse sized duck?

vivereloud54 karma

I'd like to hear the sound a horse sized duck makes. I imagine it has quite a deep quack.

kiaderp7 karma

May we please hear more funny stories like the soccer coach if you can remember any? Any substitute teacher pranks/mishaps?

vivereloud26 karma

A teacher called me up to her desk one day, in the early stages of my hearing loss. It was in the middle of silent reading time, so she was speaking softly and I had no idea what she said. She repeated herself several times, to the point it looked like she was yelling... but I still had no idea what she was saying. So I just shrugged repeatedly.

When I got home that night my mom informed me that the teacher called and told her about the incident in class that day. Apparently the teacher had been asking "are you having trouble hearing?". Whoops

buttons3012 karma

That's like when my fifth grade teacher told me to go get my eyes checked in a sassy way. I did, and I needed glasses!

vivereloud4 karma

I swear, teachers have a sixth sense. But I'm still confused as to why she would orally ask me if I were having hearing problems... huh.

ShotgunLagoon7 karma

How did you feel when you could hear again? I imagine you were kind of shocked at how much there is to hear, like the feeling when you first get glasses and learn there is so much detail to the world.

vivereloud20 karma

Glorious!! I wasn't so much shocked at how much there was to hear but just at how LOUD it all was. It's very easy to forget the intensity of someone's laughter when you haven't heard it in years. There was lots of shushing people for a good while afterwards.

dogs_love_bones7 karma

Was there an aspect to being deaf that you enjoyed? Perhaps one that you miss now.

What do you appreciate most now that you have your hearing back?

vivereloud35 karma

Once at soccer practice I was chatting with my friend. The coach started getting mad at us because I kept talking over him (he was standing behind me so I couldn't 'see' him talking). He said "why do you keep talking!!" and I said "I'm sorry, I'm deaf." He started laughing in my face and said "don't give me excuses!". The whole team gave him a blank look and said "no.... she's actually deaf." that was priceless.

I appreciate classical music much more (especially Beethoven as he was a deaf composer). I also love to just lie in a field and listen to the wind, as all I hear for two years was my heatbeat in my ears. It was nasty

dogs_love_bones3 karma

Haha, bet he didn't expect that. i can imagine you get sick of hearing your own heartbeat pretty quickly,

what sort of music were you into before you went deaf? what are you like when you are in complete silence now, do you like it or do you hate it?

vivereloud27 karma

I enjoy the sound of silence now. Hearing silence and deaf silence are two different things - deaf silence is sad and lonely as you're almost trapped in your head; it's lonely. Hearing silence is full of hums from distant cars and buzzing of the lights and drumming of the furnace. The hearing-silence is a beautiful thing that you can't appreciate until you've heard what absolute, lonely deaf silence sounds like.

ThatIrishGobshite7 karma

How did going deaf impact on your relationships with friends?

Family will always stick by you but as a teen I don't know how I would handle a friend going deaf (I'd like to think well, but you never know).

vivereloud27 karma

I lost a few friends. Some thought it was hilarious to stand across the playground and make fun of me, not understanding that even though I couldn't HEAR, I could still see their dumbass gestures and read their lips. Kids are mean.

My friends now are awesome and have supported me throughout my DJD journey, they're phenomenal. They enjoy my deaf surgeries and like to joke with me when I don't hear things ("what are you, deaf!? ha.")

brian_diener7 karma

I must ask... What was farting like while deaf?

vivereloud48 karma

Like a big yelp of freedom flying out your ass. I mean you can totally feel them but when people know you're deaf they're like "oh no don't make it weird she doesn't know!"

Fuck it, it was great

graaahh3 karma

...how is that the assumption anyone comes to? You can still feel yourself farting.

vivereloud7 karma

Because people are too scared about being politically correct and not offending the handicapped.

Swaggin_236 karma

So how is your jaw now? Is it still degenerating? Do you take treatment to restore it/prevent further degeneration? And is there a risk of anything similar happening again?

vivereloud11 karma

The degeneration is still active in my left condyle but it is mild. I am not receiving treatment (at the request of my jaw surgeon) because it could aggravate the condition. I am consulting with a surgeon in Texas to see if I need to have my jaw joints replaced unfortunately. Waiting on the news.

The MRIs and CTs have said there is little if any risk of it happening again thankfully :)

MeinFuhrerICanStand6 karma

After reading your story I must say you have quite a resilient soul to be able to deal with it in such a good way. I have Tinnitus and when I got it (after going to a bar - music was real loud and I didn't think I would need ear plugs at a bar) I basically cried like a little baby for about 4 days before getting my composure back and getting on with my life. I could not imagine life without sound. Seems like you dealt with it quite well.

vivereloud3 karma

I had some Tinnitus before I went completely deaf. After the ringing it moved on to silence and the sound of my hearbeat in my ears which was horrible. I could barely sleep at night because of the WUB WUB WUB.

I try to stay strong, and my family helps. If I didn't have their support I would have lost it a long time ago. They've taught me to roll with the punches and accept the cards I've been dealt - I've got them, and it's up to me to make something with them :)

MeinFuhrerICanStand5 karma

Cool - I think I always have had the WUB WUB WUB as long as I remember - but it was only if one ear was completely covered by my pillow. The Tinnitus was real bad though. Thought I was going insane. I now sleep with a loop recording of raindrops on a window to get to sleep, otherwise - its NO sleep. 0_0. Its real nice that you have your family supporting you. Haven't had much here so I tend to keep it to myself.

vivereloud9 karma

That's funny - after I regained my hearing I started having trouble hearing, and I listen to music or nature sounds at night now. I guess I almost felt lonely without my heartbeat keeping me company.

If you ever need somebody to talk to or some moral support, shoot me a pm. I am beyond glad to talk things out with people and help or give support where I can. Don't settle for suffering through it alone!

mustard_on_all6 karma


vivereloud4 karma

Yes and no. Because I'd been playing for 8 years at that point, i knew the sounds of the notes and would sing them in my head as I played them. It was wonderful to hear the real tones again... I'm extremely thankful to have gotten a second chance at experiencing music.

musicguy20133 karma

May I tag you as "Female Beethoven?" :)

vivereloud7 karma

It would be an honour!!

shadowinplainsight6 karma

Could you tell the difference between someone yawning and someone screaming? I've always wondered that.

vivereloud4 karma

Oh yes. Facial expressions are different, mouth movement is different, and the straining in the neck muscles is different - if you look at someone yawn theres tell tale cues (mouth moving more to one side than the other) same as when people yell (your veins start to bulge out)

BarbecuedBarbie5 karma

What was the first song you listened to after regaining your hearing?

vivereloud8 karma

The sound of chairs being stacked in the recovery room - it was brutal.

Actual songs? Probably a piano song. I do love me some piano.

nickling2474 karma


vivereloud4 karma

The joints pinched my eustatian tubes causing fluid to build up and preventing my eardrums from vibrating.

I could hear like a cat after surgery.

JimmyTheChimp4 karma

Did you every go back to the other doctor to tell him/her what actually was wrong that seems like a HUGE mistake for a doctor who specialises in ears to make, that's not a mistake I'd wan't that doctor making with anyone else.

vivereloud6 karma

I've never been back to see him. It was a huge mistake on his part, and people need to be very, very aware of their own bodies and their own symptoms. Sometimes doctors are wrong, that's life... but if something is wrong, you can't just let it slide because a doctor said so... if you aren't going to fight for yourself who will!

snackerel3 karma

Was there any reason that the fluid in your middle ear wasn't detected by your first ENT, or were they just incompetent? Or did they just think it would drain on its own eventually? It seems crazy to me that an ENT wouldn't try harder to fix your hearing problems when they persisted for so long, especially when Eustachian tube issues are so common (I have some right now cause of the flu!) and PE tubes are a pretty easy way to solve your type of problem.

vivereloud9 karma

The fluid build up was evident, but the ENT thought it would release itself naturally. Temporary fluid build up is common in children, but it usually releases shortly after. I think that he just wasn't wanting to look at the case as being more difficult than what it was - he was lazy I think. Didn't want to trouble himself with the diagnosis process.

The second ENT was an amazing guy and saw me right away. I was extremely lucky that the deafness was solved by such a simple surgery. I just wish that the joint problem could be solved as easily.

Tbone8203 karma

did your level of appreciation for music increase?

ever listen to classical music?

vivereloud3 karma

Exponentially. I've loved music since I was born and it increased tenfold after I was truly able to hear it again. It's like... you had a Kinder Egg once and it was awesome, but you went to America and then couldn't have one anymore... You're super fond of the memories of the chocolately goodness, but you're tasting based on a memory. Then you come back to Canada and just indulge in all the wonderful Kinder Eggs you want and they're SO GOOD

I am trained in classical and jazz piano. I'm working on a Mozart Sonata and a Chopin Waltz currently!

walkinglucid3 karma

What was your favorite part of being deaf? (thinking positive)

vivereloud12 karma

When I brought up, mid conversation, that I was deaf. The looks on their faces were priceless. It was like "bu...but how are you speaking!?" sort of thing. Hah

kazneus3 karma

I'm 25, and I have degenerative disc disease. No deafness, but I've had one fusion surgery in my cervical spine, and I might need another soon.

No question.. just wanted to post up some solidarity! I'm hesitant to say chin up.. but anyways, you seem like a cool girl and I'm sure it's hard sometimes to deal with all this stuff, but you're doing awesome, so keep doing awesome!

vivereloud3 karma

I think that the DJD is much harder to deal with than the deafness was. It felt like with the deafness there was hope that I would get better that just isn't there with the DJD... I'm not bad enough to require a prosthetic joint but not good enough that everything is perfect with my bones. Sometimes I do get upset and angry with my diagnosis, but I recollect and look at my disease on the grand scheme of things, just to keep my moodiness in check.

It's a tough situation for me to come to terms with, and I really appreciate you reaching out. It's nice to know I'm not alone, thank you.

Raven9613 karma

As someone studying to be an Audiologist, it's ridiculous that your ENT didn't do something sooner about your hearing loss! Saying that you can grow out of deafness is about the biggest load of crap I've ever heard. As an ENT, he definitely should have known that PE tubes were necessary.

Someone else may have asked this already, but I was just wondering if you had any residual hearing loss as a result of all the fluid buildup. Also, when you had your hearing loss could you hear anything at all?

vivereloud9 karma

We were also surprised at how urgent the situation was once we switched ENTs. Had I not switched when it did, it is likely my eardrums would have ruptured... but they caught it just in time that my hearing was restored completely. I'm very fortunate.

I'd also like to say thank you and all the other audiologists out there... I spent many a day in sound booths with you guys!

V2Quiet3 karma

how did your family treat you those two years?

vivereloud6 karma

I was treated no differently than I was when I was able to hear - I was still grounded and scolded like every other kid.

They really focused on letting me know that just because I had a problem, it didn't mean I was any different than anyone else. I was still capable!

pauloh1102 karma

Did you cry when you heard sound? I hear that from some people and its a beautiful thought.

vivereloud7 karma

Yeah, because the bitch of a nurse was stacking chairs in the recovery room. It was loud :(

zexez2 karma

How did you regain your hearing back?

vivereloud3 karma

Surgery on my ear drums to drain the fluid build up! Lots of blood and puss.

Runorun2 karma

So would you rather go deaf again or blind?

vivereloud8 karma

I'd much rather go deaf again than lose my sight.

Nov3mberist2 karma

do you like piano?

vivereloud4 karma

I adore it.

Nov3mberist5 karma

Thanks for humoring my smartness comment :) what's your favorite piano piece? My personal favorite is Clair de lune

vivereloud5 karma

Les Adieux for me!

cjdavda2 karma

What was your favorite type of music before you went deaf, and what was your favorite type of music after you regained your hearing? Did your tastes change as a result?

vivereloud19 karma

Hah, as a 13 year old girl I loved Avril Lavigne (I thought I was so badass). After the hearing loss I was kind of clueless about the current music since I truly hadn't heard anything... so back to Avril Lavigne.

Currently I'm into Modest Mouse, Fleet Foxes, Black Keys, that type of thing... along with jaaaaazz!

gaj72 karma

They punctured my ear drums and inserted drainage tubes that stayed in for 5 years (for most people that get these inserted they stay in for ~6 months). I can now hear again!

How long was it before you could hear again? Was it immediately after the surgery or did it take some time?

vivereloud5 karma

I could hear immediately after surgery... the lady stacking chairs in the recovery room was surprised too. However, they kept the tubes in to prevent the problem from recurring later on. Eventually they just fell out and my life is dandy.

The tubes were gross though, sometimes I'd wake up and have nastiness on my pillow.

axtang2 karma

Did you take some kind of action against your previous ENT? It's a bit ridiculous that you were deaf for 2 years due to his/her failure to spot the problem.

vivereloud6 karma

I did not take any action against him. Technically he did spot the problem (the plugged eustatian tubes) but he didn't want to look into what caused THAT problem (the jaw). To be fair, nobody found the jaw problem until this year... he just assumed that it was an easy case that would solve itself and was too lazy to look into it further.

slick-lily1 karma

I'm wondering if it was not laziness but more like he hadn't seen something like your case before? Maybe he figured, like most kids, it would just alleviate on its own?

vivereloud1 karma

This is true, but most cases in children alleviate within about 6 months. After that, they go in and put drainage tubes in the kids ears. The fact that my hearing loss lasted well over that point should have been the biggest heads up to him.

ferd23182 karma


As of a hard of hearing individual who lost my hearing at birth and re-gained several years later.

Did you ever wear hearing aids or were you deaf enough to have cochlear implant?

Did you ever use your deafness for your own benefits? ex: annoying kids in public. xD

Congrats on the recovery and good luck in your future.

vivereloud4 karma

I tried hearing aids but they just felt so unnatural and bothered me... it didn't make the heartbeat-ears go away and they buzzed. I didn't need a cochlear implant because my hearing loss was in my ear drum/eustatian tube and not due to nerve conduction.

I would use it to be sassy if people were rude to me ... "oh sorry, I'm deaf," and that would throw them into an "omgI'msosososorry" panic

maaang2 karma

what did you do during your deaf period to communicate with people?

vivereloud6 karma

Reading lips. It comes very quickly when it's all you can do. I was able to speak clearly as always though, since I went deaf later in life.

myfourthHIGHaccount1 karma

You have said this several times..

i knew the sounds of the notes and would sing them in my head as I played them

How hard was learning new songs? Or improvising?

vivereloud6 karma

I didn't start improvising until after I had regained my hearing. I've only recently started toying with it in the last few years.

It's more like when you read, you can see the word and hear the word in your head. You don't need to hear it out loud to know what it sounds like. When I see a 'G' written in the treble clef I can immediately hear what it sounds like in my head. So, when I see music, I 'read' it in my head, just as you would read a book in your head.

Jose_Monteverde1 karma

What type of complication?

Was it a gradual recovery or did you gain it all back after one procedure?

Did you know it was temporary?

vivereloud1 karma

Degenerative joint disease, my jaw is sitting in a strange position now.

I had one surgery to drain everything, and the drains were kept in for 5 years to prevent relapse.

I was initially told it was temporary, but after two years I started to wonder. Switched docs and he fixed it within 48 hours!

Sebaman1241 karma

Well congrats to start off. But my question is, is there a chance this will ever happen? Do you have to take certain precautions from now on?

vivereloud3 karma

Thanks! Based on my MRI and CT reports, I'm not in any danger of this happening again. The infections are what made it really bad, and I haven't had an infection in years. I've had some treatments done to advance my jaw which took the pressure off the eustatian tubes as well.

Specialkaye951 karma

Being deaf did you ever just play music you heard before in your head? Like when you were playing the piano could you hear the music even though physically you were unable to? This AMA is really interesting thanks for taking the time to do it, and I'm glad you can hear again!

vivereloud1 karma

Yes, all the time! Being deaf absolutely didn't stop me from learning new pieces. It's a lot like reading in your head - you can hear how the words sound in your head. Because I played piano 8 years at the point I went deaf, I could look at a song and hear how it sounded in my head.

mszaz1 karma

Hello! What sound did you "miss" the most?

vivereloud3 karma

Laughter, cats purring, voices of my family, the true sounds of piano... What I really got sick of fast was the sound of my own voice!

GammaGrace1 karma

As someone that has severe and moderate hearing loss that can't be fixed, I'm really happy to hear(har har) your story. I too had a ENT that was horrible. I like to think of him as the Butcher. From age 5-14 I went to this doctor and all he did was recommend surgeries for tubes. Sure, that got rid of the infections for awhile, but I had a lot of scar tissue built up and my ear drums are practically transparent these days. It wasn't until I was 22 that I had a good audiologist who explained that I have nerve damage too. So, I'm enjoying all the music, laughter and sounds of life that I can now :)

Did you come across a lot of people that seemed to "forget" you were deaf? It probably happens more with people like me. I get so annoyed when people go back to talking soft and facing away from me.

vivereloud3 karma

I'm sorry to hear you also had a bad experience with an ENT... it seems like some of them are all about quick fixes and waiting games without diagnosing the actual issue. Its frustrating. Do you use any technology to enhance your hearing? I tried hearing aids for a bit but they drove me bananas.

Yeah there was a lot of those, mostly teachers. They were told that they needed to face me for the lesson, which often was forgotten about or wasn't feasible with the nature of the lesson. I had some pretty cool friends who would help explain things to me when stuff wasn't clear.

xKySon1 karma

Did you talk to people when you were deaf? Like would you read lips and then respond in speech back to them?

vivereloud5 karma

Oh yes, I functioned totally normal in society... well, for the most part. Sometimes I seemed like a bit of an airhead, not coming when called sort of thing. But as far as ordering food, going to the movies, talking to strangers face to face ... all of that was handled with lip reading!

QuotesYourComments1 karma

How do you say "Live loud" in Italian?

vivereloud1 karma

It all makes sense now doesn't it? ;)

Aonpyro1 karma

Can you describe what it was like to hear again for the first time after 2 years of being deaf?

vivereloud5 karma

Picture yourself sleeping in a dead silent room. In front of you is an enormous movie theatre speaker. You open your eyes to wake up one day and .... BOOM suddenly the speaker is on and it is horrendously loud.

Pretty much like that. I woke up after surgery and it was like someone had finally unmuted my life, but left the volume at 500

bisphosphatase1 karma

Hey I just wanted to say I'm inspired by your story....I also was diagnosed with a degenerative disease a few years back, but mine is auto-immune and affects my eyes. I suffer a lot of vision damage and could potentially go blind, but your upbeat attitude reminds me a lot of how I approach my condition! It's inspiring to see someone else who has been through something very life-affecting, who is on the other side and still so optimistic. Congrats on getting your hearing back, and best of luck to you in the future!

vivereloud3 karma

Thank you so much, that really means a lot to me.

Degenerative diseases are brutal and unpredictable, especially when it flirts with taking away such vital functions like sight, or speech or hearing. Right after I was diagnosed I just sat around in a complete slump for about a month until I realized that just because it's there doesn't mean it has to overpower all the other aspects of my life.

We weren't dealt a great hand, but hell, if even one card in my hand allows me to inspire or comfort or help someone because of what I've been through, so be it. Nobody should go through something like this alone.

Stay strong friend :)

DanDrimba1 karma

Did you other senses heighten? Did you fight crime with said heightened senses? Now that you can hear again, are you 2x better with said heightened senses?

vivereloud3 karma

I didn't need my glasses at the time, but my vision wasn't exceptionally terrible (it was like -1.5 or something). Now that I can hear again my vision is at a -2 or -2.5 ish. So it's a real thing!

arcanition1 karma

How would you describe sound to a person who's been deaf their whole life?

(also that typo in the title is bothering me)

vivereloud1 karma

Hmm.. It's like if you put cotton in your ears, push your ears shut with your fingers and then go underwater.

I was able to hear myself speak but nothing else (similar to how if you plug your ears you can hear your voice in your head). At night when I tried to sleep I would hear my blood pulsing in my ears very loud.

xwarborn26x1 karma

What happened with the first doctor who misdiagnosed you? Did a lawsuit come out of it?

vivereloud3 karma

No lawsuit came out of it. Had my eardrums ruptured (like they were about to) we likely would have sued for malpractice.

NanniLP1 karma

What was the first song you put on/played upon fully regaining your hearing?

vivereloud1 karma

Probably a piano song, but I can't quite remember. It was incredible to re-experience piano music though.

thegreatshark1 karma

Thanks for the so much AMA, what sound did you miss the most when you were deaf? and what about now, is there anything you miss about being deaf?

vivereloud7 karma

I missed piano, I missed hearing everyone's voices and laughter, I missed hearing my cat's meows... all of it!

It was hilarious to mess with people ... saying things like "oh sorry, I'm deaf" and they'd do a double take. Ah, the good ol days.

HeatherBeam1 karma

How was the sensation when you were able to hear again? Was it a slow transition?

vivereloud3 karma

It was like getting smacked in the face. Immediately after surgery I was able to hear and holy hell was it ever loud. Wear ear plugs for a full day and the relief you'll experience when you take them out is heavenly.. then multiply that by 730 days and its... unreal. absolutely unreal.