IAmA profoundly deaf teenager who had his second Cochlear Implant surgery almost two years ago. This is an update to my last quite successful post.

My wife got her implant 2 years ago now. She has thought about getting the other but has been told its not much of an improvement. What has your experience been with having the second one. She has a hearing aid for the other ear. I do know she loves the implant though because it allows her to do things she used to not be able to. We went on a cruise recently and she got to swim with the dolphins which are her favorite animal in the world. She had to take the hearing aid out but had a waterproof cover for the implant. The fact that she could hear while being in the water thrilled her so much that you could see it on her face. Anyhow, sorry to digress, was just curious as to your experience with the second implant.

Not sure how much you know about this, but the earlier in life one gets the implant, the faster and better the improvement will be. I don't know if your wife was deaf all her life, or if she only got moderate hearing loss, but assuming worst case, she's just like my mom, who was also born profoundly deaf and didn't get an implant until she was 33. She hasn't gotten a second one because it would definitely not be worth it with the little improvement she got from the first one.

However, for someone like me who got almost everything I could have out of the first one starting at ten months of age, a second one will be, and has been so far, greatly worth it. So depending on where your wife is in that range, you guys will have to make that decision with your audiologist whether a second one is a good idea.

Completely forgot. One of her favorite things is that she can connect her implant to bluetooth and take calls, listen to music, etc. Shes done it at work and sometimes I will see her wandering around not paying attention to me and I will realize shes listening to music. Its really odd not seeing or hearing anything to indicate shes doing that. So sneaky.

I do the same! It's also really fun to lower all background noise entirely if I'm trying not to be bothered by conversations in the car. It's so relaxing too, to only hear music and nothing else. Unfortunately I totally miss it if anyone tries to talk to me so I don't do it often lol

Cochlear implants are really cool. I've listened to a number of examples of what music/sounds sound like for people that have them.

I'm not sure if you can know how things are "supposed to sound" to compare it with... But I'm curious, we've designed music around how normal hearing works for normal people. It seems with cochlear implants that music sounds dramatically different, loss of tonality and pitch.

What do you think of music? Have you been able to identify with any music and find it enjoyable? From what I was to discern about how music likely sounds *to you* it occurred to me that we should probably try to make music for individuals such as yourself and build it around the way you hear - even if it sounds ridiculous to the rest of us.

What are your thoughts on music and your hearing compared to normal biological hearing?

I can recognize pitches and the like in music, but I really enjoy a good beat. As such, my main genre I listen to is various types of rock; from butt rock in Sonic Adventure all the way to the heaviest 80s metal. Similarly, dubstep is a blast to listen to.

I'm curious as to this new type of music you're thinking of experimenting with. Please reach out and if it's good, I'd be glad to promote your music for free!

What’s with the capitalisation of deaf? I have quite severe (and increasing) hearing loss from contant ear infections and I keep being referred to as Deaf which I’d never come across before until v recently. How come I’m Deaf but my brother isn’t Blind?

From what I know, deaf refers to the actual condition of being deaf, and Deaf refers to someone who is part of the Deaf community. I should do more research on why exactly it's capitalized as a difference maker. I don't know enough about the blind community to answer your last question. Who knows, maybe members of that community are also called something slightly different.

It's my understanding that there is a lot of controversy in the deaf community surrounding the implants. I am acquaintances with a deaf woman, and she absolutely HATES the thought of the implants. She is of the opinion that she is not broken and doesn't need to be fixed. She has real issues with people who get them or get them for their kids. Apparently, this is a common belief. Is there really that much controversy with these implants? If so, have you run across it at all?

Generally, I know that there is controversy, but all the deaf people I've met here in New York City don't have a problem with it.

Of course, the view that deaf people are broken and the only way they can be happy is with cochlear implants is absurd and ignorant.

People can do anything they want with cochlear implants, but using them to streamline their deaf children hurts the Deaf community and suppresses the spread of awareness. Even though I wear two CI's and my quality of life is very much improved, I'm still proud of my deafness and maintain a healthy standing in the Deaf community. In my opinion this is the best way to utilize cochlear implants.

the view that deaf people are broken and the only way they can be happy is with cochlear implants is absurd and ignorant.

Have you ever actually met someone who thinks deaf people literally can't be happy without implants? I think the more realistic misunderstanding is people who assume all deaf people would want the implant if they could get it. I doubt anyone actually thinks deaf people can't be happy as long as can't hear.

From my experience with those who get overly apologetic and pitying from hearing of my deafness, it at least sounds like these people think I'm miserable.

I'm still proud of my deafness

I'm not sure I exactly understand this. Would you be able to explain why you are proud to be deaf? It seems a bit like if someone lost their legs, and said they were proud of not having legs. Sure, you can live a decent life without legs, and you don't need fancy prosthesis to get by. But the idea of this person being proud of not having the ability to walk seems so foreign to me.

It seems like if this sense of pride in being deaf is common, then I can see where the shaming might come from towards people who get implants.

Sorry if that's personal or blunt, I've just never heard of this concept of deaf proudness or implant shaming, this thread has been eye opening.

In any case, I'm glad your implants have gone well and improved things for you!

Pride in any disability one has is encouraged in most communities. It's probably foreign to you because you don't have the disability. How else would you find validity in your life? You have to seek out the positives you get from your disability rather than the negatives. And what most don't realize is that CI's don't take away ones deafness. It's just a tool to make life better with it. That's why I continue in my pride. I know an amazing community, an amazing art that is American sign language, and I get to help out all the amazing people by spreading awareness.

I'm glad you've learned a lot from this thread; that's the goal.

What's the difference between regular deaf and profoundly deaf?

Profoundly deaf is simply a way of saying that I have 90-100% hearing loss. Those who are hard of hearing are technically deaf, as they have some extent of hearing loss, but not totally. So most people in the Deaf community may have only one ear that is deaf, or both may have slight hearing loss, but they are still considered Deaf.

What is a sound you were most surprised by? Anything make a noise you really weren’t expecting?

This isn't the answer you may be expecting, since I first started hearing at 10 months of age. Thus, I was not quite understanding enough of the world to "expect" sounds.

However, some things do sound a little different with a second implant. I'm still not used to someone talking on my right side, since that new side can't comprehend speech yet. In fact, if it's too loud on that side, I could almost lose my sense of balance somehow. Couldn't explain it; it's just that weird.

I know that feeling! Like the noise is too “loud” and it’s like you get momentarily stunned?

I physically flinch!

Do you get much hearing benefit from the second implant? Guessing you can hear some sounds from the second side, but do you have much speech recognition if you were to use this side alone?

As of now, I don't have much speech recognition, but it's been very slowly getting better. If I used only my weaker side more often, I'd probably have better results, but it's least of my concerns in times like these.

Do you know how to sign fluently?

My mom raised me in ASL, so I'd like to say I'm fluent, but I don't really communicate with enough Deafies to prove it.

So, how much shade are you getting from the (rest of the?) Deaf community?

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Generally, I know that there is controversy, but all the deaf people I've met here in New York City don't have a problem with it.

Of course, the view that deaf people are broken and the only way they can be happy is with cochlear implants is absurd and ignorant.

People can do anything they want with cochlear implants, but using them to streamline their deaf children hurts the Deaf community and suppresses the spread of awareness. Even though I wear two CI's and my quality of life is very much improved, I'm still proud of my deafness and maintain a healthy standing in the Deaf community. In my opinion this is the best way to utilize cochlear implants.

I see you understandly take the magnet portion off for comfort during sleep. How do you set an alarm to wake up? I've heard of vibrating rings or bracelets but have never seen them or known anyone who has.

I have an old alarm clock that has a disc thingy. If you plug in the disc thingy and put it under your pillow, it will powerfully vibrate at the right time. It also has a lamp function that turns the lamp on at the right time. They both work relatively well for waking me up.

How comfortable are they to wear? I have a bone-anchored hearing aid which causes zero discomfort, and I've had BTE hearing aids in the past which were difficult to wear for more than an hour. How do cochlear implants compare to those?

I don't even think about them being there most of my life. When they get in an uncomfortable position, I subconsciously adjust them, much like one would do with a pair of glasses.

Do you have any pain from either surgery? That spot behind my ear where they drill still hurts sometimes

I get a weird itchiness once in a while behind my ear and where the magnet is but that's about it. Could that be what you're talking about?

I’m not sure if the surgery is done in more than one way but they drilled right behind my ear to feed the electrodes into my cochlea. The magnet is a little higher up than that but I guess I’m talking about the very bottom part of the disc portion surrounding the magnet combined with the drill spot.

That might very well be a different way. I have a linear scar across my ear that used to have stitches on it.

How was recovery from surgery?

The first two nights were AWFUL in trying to sleep; it got exponentially better from then on.

I don’t know much about those implants. Do they need to be switched out every so often or do they last a fairly long time? How does it affect daily life for you, like washing your hair or sleeping?

The implant itself was inserted into my cochlea (hearing organ) through surgery. That is supposed to last a lifetime, otherwise we'd have to pay for a surgery too much.

The hearing processor, which is what you see on the outside, has a magnet that sticks to the implant inside my head. It also contains microphones that take in the audio that is transferred all the way to my brain through the implant. This processor is upgraded every five years or so, while continuing to be compatible with the old implant I have inside me.

I take off the processors when I do anything that involves me getting soaked (they're water resistant, but not waterproof just yet) and when I go to sleep for comfort reasons. So yes, I don't hear a single thing when I take a shower or go to sleep. Also, since the magnets aren't necessarily super strong (for health reasons) when I do things like riding a roller coaster I have to take them off so I don't lose them forever. The rechargeable batteries also sometimes don't last the whole day, so I have to carry extras.

Very interesting. Have you ever had a situation where you felt glad to have a personal world mute button?

I don't even know what it's like to have a hard time sleeping. It makes me feel bad sometimes, hearing about everyone else's difficulties. So I don't take that for granted.

At the end of a long day, it is a marvelous stress reliever to simply take them off and breathe for a little bit before doing some of my hobbies. I guess it's kind of like meditating! That's probably the best way I've experiences the "world mute button."

My son had bacterial Meningitis and as a result, became profoundly deaf unilaterally. A (potential) side effect of this disease is ossification of the cochlea, and we were given a very limited time-frame (10 days?) to which the procedure could even be attempted with no guarantee of success. He was 10 months old.

We opted to try, and it was successful. I have read that some in the Deaf community may ostracize him for having an implant, but at the same time, non-deaf kids will likely ostracize him to some extent for also, ironically, having an implant.

What is your opinion of some of the Deaf community's responses (the negative ones) to kids like mine and people like you? They didn't ask to be implanted, and they can always choose to never wear their processor if they feel like it. I don't know, but I don't see how I could have made the choice to give my son no option at all.

Maybe I was lucky having been homeschooled, but I haven't really had any bad run-ins because of my implants. There's a whole community of deaf parents with implanted kids. And most hearing kids I've spoken to have just been like "that's cool" and moved on.

If you do see someone who is hostile towards that, I'd definitely ignore them and stay away. They have zero reason to try to control your decisions, and they're just obsessed imo. They have good intentions, of course, but there are ways to have the CI and also be a part of the Deaf community.

First off, I just want to say thank you for spreading awareness. People like you make me a lot less terrified about where I may be headed and I’m sure it helps a lot of other people as well. (Sorry this is so long)

A few years ago, I started having very loud bilateral tinnitus (ringing in the ears). They say it was from sound damage but I’ve always been cautious about how loud things are around me, so I’m not sure. Because of the tinnitus, I had a few hearing tests done and another test that was supposed to determine the pitch of the tinnitus (I guess). It turns out, I have upper register hearing loss and my ears ring in two different pitches. I also experience a bit of muffling in most cases but especially with deeper voices and the tinnitus makes it so sounds have to be quite loud for me to hear them over it. Like, I still hear the sounds, there’s just a high pitched squeal on top of them so I can’t interpret them. Idk. I haven’t been technically diagnosed as hard of hearing but I watch all television with captions and I often have to look to friends and family when someone in public is trying to speak with me because I didn’t understand what was said. I don’t often hear the oven timer and I usually can’t hear ambulance sirens until they’re right next to me. I also do a sort of lip-reading where I can hear some sounds and make out some of the sounds from lip movements and then I put it all together. I tend to get annoyed when people talk with their hands in front of their mouth. I never understood how frustrating it could be until I starting having hearing difficulty. I know I still have a lot of hearing though as I can usually make it through a drive through with no issue and I participate in conference calls at work with only a few issues.

My initial hearing test was about six years ago and I haven’t been back since, although I know things have been worsening. I know I can’t afford the specialist bills and I don’t want to pay several hundred dollars for someone to tell my my hearing sucks and not be able to do anything. I’m waiting until I’m financially better off or my hearing drastically decreases.

I guess my question is, would it be wrong for me to tell people in some situations that I’m hard of hearing since I have no actual diagnosis? Like, would that be considered taboo in the Deaf community? I want to be respectful to the community but I want to get my point across to people in less words when I need them to speak up or face me when they talk. “Hey, I’m hard of hearing. Can you speak up?” Is a lot quicker than some of the other explanations I’ve tried.

Plenty of people in the community are there because of their tinnitus. I have no doubt you are a part of us, especially with your descriptions about your daily life.

I relate with them so much, especially the dependence on reading people's lips! I've been getting better at it lately but I hadn't even realized how much I depended on it until I got the second CI.

I've heard that CIs cure tinnitus for some people, btw. Don't quote me on that, because a lot still have complaints, but I know a guy whose tinnitus was almost completely abolished after getting a CI. just something to consider for the future.

Thank you for that. I’m not sure why but your validation made me tear up. I look forward to being a part of the community.

If you ever need anything, shoot me a dm. Same goes for everyone else, as I'm always open.

Are there magnets in your head? I knew a deaf wrestler who had magnets in his head when we were in high school. I never knew what type of surgery that was though.

That sounds like a cochlear implant surgery. Whether he decided to wear the outside processors so he could actually hear was up to him, I guess.

How do they measure how well you can hear? They must have some kind of hearing test to measure the success of the surgeries? Also how did they test your hearing post surgery while you were a baby?

To put it as simply as possible...

There are two speakers, one on each side of me. I'm in a soundproofed room by myself. In the room across from me separated by a window, is an audiologist controlling what pitch and decibel noise comes out of those speakers, and I raise my hand if I hear something or not. The test results are measured in how many decibels of hearing loss I have, before and after (without the implants, I believe I have 100-something dB of hearing loss.)

As for when I was a baby, I'll get back to you on that.

They do the same thing for babies and little kids but usually on mom or dads lap in the booth or audiologists office and watch to see if the child looks at the speaker. You’ve probably seen those dramatic videos were the child hears for the first time and their face lights up. Source: father of child that received double cochlear implants at 12 months.

Yep, those videos can be called inspiration porn, and use those children as tools to cause inspiration in ignorant viewers solely for their disability. I wouldn't call it the greatest form of art, but it's there and frankly looked down upon by the Deaf community.

Here's a weird question, I'm super loud. Like, by a wide margin, I am naturally the loudest person I know. I'm also a teacher. One day, another teacher wanted to see how loud I was, so they got a decibel reader thing. And apparently during lessons I sit around 100dB. (Thankfully I don't lecture too long)!

Does that mean that you'd be able to hear me when I hit that threshold, or is it more complex than that, and my guess would be, very dependent on things like pitch?

I think I'd be able to hear you if you broke the threshold (I don't think you would), but I wouldn't be able to comprehend your speech without the implants. I also think the pitch is a factor. Lower is better I believe, as I'm more likely to hear a jet engine than any higher pitched sound.

What myths about Deaf people do you find to be most persistent? Funniest? Most harmful?

I have a coworker who is Deaf and I asked him about one I had seen recently on reddit : that many young Deaf people are surprised to learn that the sun doesn't make noise. He said he never thought the sun made noise and had never heard of anyone who had.

One I really don't like is the assumption that deaf people are also mute; my mom is very self-aware of her voice so she doesn't vocalize when she is communicating as much as other deaf people do. It may seem like a harmless myth. But when they get shocked and weirded out hearing the vocalizations of another deafie, that's when it becomes a little ableist.

What happens when you are texting someone and they do a voice text?

Oooooh that secretly ticks me off to no end! I have to go grab my special CI headphones and plug them in and connect them to my implants and it's such a drag to be able to hear those! Sometimes I just leave them on read because it's such a drag lol

Do you use any accessibility services in school, or do you find that to be unnecessary with the implant? Before you had the implant, what services did you use?

As I was homeschooled all the way through high school, I was pretty okay with one implant. Now that I'm in college, I really only make sure I'm in the front row. If I'm too far back, I'll definitely have trouble hearing.

I’m sure you know this, but just a heads up that if you ever wanted real-time transcription services, your school would arrange it and pay for it at no cost to you. The transcriber could be located remotely, so not in the class with you, but listening via Google Meet. As class progresses, you’d see what’s being said as it’s being said. Then you get the transcript emailed to you, which is often very useful to have (really would be for any student!)

Let me know if you have any questions about it. This is what I do for work. :)

Really? My college's disability center has made no mention whatsoever of this service. Can I dm about where I am?

Do your parents yell at you more to do chores like clean the dishes or take out the trash now that you can hear?

Joke or not, I can boast in their extremely good parenting as they treat me with respect.

Favorite type of music or singer?

Rock and roll! Dubstep is also a bonus for having the sick beats

My husband is totally deaf in one ear from birth. He has significant hearing loss in the other. He complains about headphones to listen to music since he only hears one channel in stereo and if he converts a sound file to mono it sounds flat. Since you now have 2 working implants, do you perceive a more enhanced stereo sound as I assume you plug into each implant for headphones? My husband is very skilled at faking hearing. So much so, that his total deafness on the left wasn't discovered until he was 10 or 11. At age 35, I took him to a specialist that treated my son at Boystown Hearing Institute who diagnosed my husband with missing bones in the middle ear and assured him that he was deaf from birth. My heart aches for him because as a child he was branded as a bad kid who didn't listen in school. His mom will still get snarky and say he never listens. He works in a loud environment and wears hearing protection and the method of communication is by radio. When he properly wears protection he can't hear the radio and then his boss gets pissy. He has to remind them that he is deaf because he speaks normally and has become skilled at mentally filling in the blanks in conversation. Sometimes he gets it wrong and answers totally inappropriately and then someone will have to interpret ala Saturday Night Live Garrett Morris. Do you think an implant would help with any of these issues, especially his problems understanding speech in loud environments?

An adult with deafness from birth will see improvement with a CI, but I can't guarantee resolvement of many issues. During my life with 1 (ONE) implant, I had many difficulties in loud environments and could really only hear in mono. Only now that I have two, I'm seeing improvements with said issues. Not sure if you know about this, but the longer someone goes being deaf without an implant, the harder it will be for their brain to recover and understand speech. It's different for everyone, but imo it's unlikely you'll be successful unless you work really hard to make it happen (via hearing therapy on cochlear.com).

How do you think? Do you think in letters or sign language?

I was raised in sign language but I don't think in that anymore since I speak english thanks to the CI.

What color is your toothbrush?

My favorite color; green :) How about yours?

Ohhhh I have so many questions that have been circling in my head for weeks since we covered cochlear implants in our medical ethics class.

Do you think deaf-ness is a disability or should be thought of as a different culture which is valid in and of itself and shouldn’t be “fixed”?

Do you feel like you have missed out on deaf culture? Are you considered an outsider of deaf culture?

If you had deaf children and a cochlear implant was an option, would you give it to them?

Do you have any other opinions on the topic?

Edit: a word

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Generally, I know that there is controversy, but all the deaf people I've met here in New York City don't have a problem with it.

Of course, the view that deaf people are broken and the only way they can be happy is with cochlear implants is absurd and ignorant.

People can do anything they want with cochlear implants, but using them to streamline their deaf children hurts the Deaf community and suppresses the spread of awareness. Even though I wear two CI's and my quality of life is very much improved, I'm still proud of my deafness and maintain a healthy standing in the Deaf community. In my opinion this is the best way to utilize cochlear implants.

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With this in mind, as long as I have a long term plan to keep them in the deaf community, I'd give my kids CI's because they've greatly improved my life and I'm sure they'd be grateful.