The Reality of Cochlear Implants

4/19/2016

We’ve all seen the viral videos of Cochlear Implant activations all over the Internet. The person or their family breaks down into tears when they realize they’re hearing sounds.

But these “inspiration porn” videos, as I call them, doesn’t show is what happens once the camera turns off.

Picture of a side view of a white cochlear implant on my head

Me with my AB Naida Q70

Here’s the reality of Cochlear Implants that many people, including many in the medical community, don’t realize

It’s not an “Instant Fix”:

We can’t just slap it on our head and instantly hear and understand everything. It takes a lot of time and adjustment for our brains to learn to translate the electronic signals into sounds that we may recognize.

We have to go through a lot of technical adjustments (mappings) to adjust how we’re hearing. Pitches and loudness have to be adjusted every time.

I’ve had one C.I. for 10 years until an internal failure (long story). I was reimplanted with the newest version in November 2015 and even though I’ve learned to hear well with the first one, I’m having to relearn everything all over again.

It’s not a cure for deafness:

Once we take the external part (the Processor) off we are deaf again. We’re deaf when we sleep, shower, swim (unless we have the waterproof case), or any other time we take it off.

We’re also deaf when our battery dies, there are instances where we’ve forgotten our replacement batteries and have had to go without the C.I.

I was born prelingually deaf, so I’ve pretty much missed the window for speech discrimination (0-3 years old). People expect that since I have a C.I., that I’d be able to understand them clearly without lipreading. With my first C.I., I was able to understand my husband and my kids without lipreading….sometimes. Now with the new one, I struggle to hear them even when I’m looking at them straight on, but hey, it’s only been 4 months.

It will never match natural hearing:

It is electronically produced hearing. As great as this technology is and it’s improving all the time, it will never match the complexity and range of natural hearing.

For those of us prelingually deaf, we will never know what true hearing is. For those late deafened, they never will be hearing like they used to again.

Even though it’s electronic hearing, after much training and adjusting, people can get pretty close to how they were hearing before.

It takes a lot of training:

Even some C.I. users wonder why they’re not hearing well. It takes a lot of training to hear.

You don’t need to attend aural therapy sessions by a specialist to train to hear. Play the radio or TV in the background while you go about your normal routine. Get an audiobook and print version of the same book and read along with the voice to learn different speech patterns. You can also turn on Speech option in the Accessibility menu of your tablet or phone and it can read out loud any text you highlight. Have someone read the newspaper or magazine out loud next to you. All in all, the saying “you only get out what you put in” stands true here.

You also need a lot of patience, it may take months and months, or even years before your old brain “clicks” and you finally realize that weird high pitched sound is actually a bird singing outside your window.

So there you have it, the reality of a C.I. It’s the same as any other medical restoration. You don’t expect that patient who just had knee replacement surgery to suddenly jump up and start tap dancing after their stitches are out do you?

To new C.I. users: Be patient; enjoy the little “a-ha” moments; practice listening wherever you are; don’t forget to escape to the quietness of silence when things get overwhelming; and enjoy your “new ear”.

To everyone else: Be patient, help with identifying sounds; have realistic expectations; and enjoy their hearing “progressions”.

If anyone wants to know more, .

Tracy,
"One finds limits by pushing them" ~ Herbert Simon

41 Comments

Alexandra

4/19/2016 09:40:11 pm

Hiya Thank you for putting up this post . It was a joy to read . Im 19 with daughter who will be 3 in may , that is profoundly deaf . She has just had the all clear to recieve Bilateral CI . I have seen many video of people recieving them and being amazed at what they were hearing . I kinda knew that ,that experience was too good to be true . My daughter had progressive hearing loss which started at 18 months old . She knew how to talk and understood everything until she started losing her hearing . I cant wait for the long journey ahead and seeing her rediscover the world of sound . If you have any more tips please let me know . Anything would be much appreciated :)

David

4/21/2016 10:43:31 am

It's not that it's too good to be true. They are true. CI activation experiences vary with each individual so what may be true for one is not for another. Regardless, yes, it is a journey and a rewarding one.

SharonC link

5/13/2016 08:29:56 am

Please do not discourage it is not too good to be true. Some people are discouraged because they thought it was a quick fix yes. But with time and visiting with many friends on social media they were able to work through things. Your experience with your child will not be the same as any other child. I have seen some amazing things with children Who now speak fluently after being implanted as a child. We have to weigh in on what the mothers expectation why was before the implant. Please hang in there the situation Will get better

Katie

4/23/2016 09:45:36 am

I work with Deaf children; some that have CI's and some that do not. My biggest recommendation is to learn sign language and sign all the time. You can sign and talk at the same time (it's not pure ASL because ASL has its own grammar structure) but make sure you are doing both, as it will help facilitate comprehension and understanding.

As you raise your child, remember that the ULTIMATE goal should be effective communication. Whether your child gravitates towards spoken language or sign language, whatever makes them most proficient in communication is what you should go with. It can be both in her case, or there might be one communication mode that she prefers.

Spoken language should not be the goal: communication should be. Spoken language may be the byproduct, or sign language may be. Respect your daughter's individuality.

Susan Fuhrman

4/19/2016 10:36:34 pm

Thank you, our grandaughter being evaluated for at least one, this makes it real and makes me nervous. Are we doing the right thing for her, will she adjust, she doing great with her aides and is very verbal, will this set her back? Very scared

Vernice Meade

4/20/2016 08:41:59 am

Hearing aids simply amplify sound. If she continues with her hearing aid at this point when she has been qualified for a cochlear implant, she will not continue to hear well. A cochlear implant will help her so much more. A cochlear implant mimics natural hearing and the sounds she hears are sent by electrical impulses through the processor she will wear on her ear to her brain.brains are so much more adaptable than ears. She will do great and be able to do so much more with an implant. She will be able to answer the phone, watch tv, listen to music, hear her teacher much better than wearing a hearing aid. I love mine and would never go back to hearing aids. Your granddaughter will live life much better being able to effectively communicate. Cochlear implants do that for people.

Elizabeth

5/7/2016 07:31:06 pm

"A cochlear implant mimics natural hearing" No, that is a common misconception. Sounds heard through cochlear implants do not resemble natural hearing at all.

Marlene

4/20/2016 02:46:56 pm

One thing they don't often tell you is that ALL of the residual hearing is destroyed in the ear with the implant. If your granddaughter is successful with her hearing aids, by all means leave her alone. I am an interpreter and have seen many deaf and hard-of-hearing children with cochlear implants. Some do well, most do not. I routinely interpret for people with implants that can't understand spoken language after having implants for years. While a deaf child with profound hearing loss really has nothing to lose, people with a lot of residual hearing have a lot to lose. Think long and hard before you do it. Don't listen to people that say this is such a miracle. If they don't have implants themselves, they don't know. Ask Vernice if she has them.

Mother of 2 year old with implants

4/21/2016 07:41:01 am

Very negative! Not the case in our area. Implants are successful and my son's team of doctors and therapists have told us EVERYTHING and more. It's upsetting to read your post

4/21/2016 10:53:36 am

You are not educated on the topic of cochlear implants or hearing and need to refrain from doling out harmful "advice." You see deaf and hard-of-hearing children that have implants that require your help. You don't see those that do not as they are nowhere near your world. CI surgery does not necessarily destroy residual hearing. Implants today are designed to preserve hearing. Additionally, a patient that has been deemed suitable for a cochlear implant rarely has suitable residual hearing worth saving, though they may think they do. Candidates are screened by audiologists and will not have a CI recommended if they have "too much hearing."

Almost universally, no CI recipient will tell you, "I never should have given up that 'residual' hearing." They'll tell you, "Holy shit! I was so deaf and didn't know it! Getting my CI was the best thing I ever did!"

CIs can be a miracle. I went from hating the phone to being able to use the phone again after more than 2 decades. I went from having to look at my passenger while driving to being able to drive and keep my eyes on the road. My music library is overflowing and I go to concerts all the time. None of this would be possible without my CI.

Kwai San

4/21/2016 12:45:50 pm

So NOT true Marlene - so sad to read your comments - I have been implanted for coming up on 2 years - it is a world of difference - I didn't have a rock star activation it took work - hard work but I am 100 times better off with my CI than without.

You do not know of what you speak - do YOU Have an implant? No I didn't think so.

Educate yourself a little better when you words have SO much of an impact - you are very naive with your comments. The comments here would be best if they were from implanted folks - not you Marlene - please go away with your negativity and false statements.

Sarah

4/22/2016 01:51:45 am

Please consider carefully before posting as some information is out of date. With new soft surgery techniques residual hearing is usually preserved. Often the implant only stimulates the frequencies that require 'electronic stimulation' and the person still uses traditional type hearing aids to hear the rest.
I feel that pre implant signing is a real benefit because any child deserves a language they can express themselves in. I don't care what mode that language is so long as they can communicate. This can be a real help in cases like the poor little mite who was experiencing facial twitching and possible pain. Had she has BSL she would have been able to explain her experience. I think there are still too many professionals out there that are in either a signing or oral camp when both systems are valid.

Sherri link

4/22/2016 07:44:17 am

Hello to all on this site.
I am a bilateral CI recipient. Great article! This journey is certainly much more of a Marathon rather than a sprint, but so worth the training.
I would like to make a statement concerning residual hearing. I had normal low frequency hearing but was profound in the mid and high frequency!
The new technology of shorter flexible arrays allowed me to keep most of my residual. I can't say enough about all the advancement being made in this area.
I am living proof that It is possible to keep residual hearing in the low frequencies while enjoying the benefit of electronic hearing in all frequencies I had no hearing.
Best of luck to those considering surgery. I have never looked back, and my life has changed for the best.

clara

4/22/2016 11:32:35 am

i totally agree with this, my daughter was born deaf and offered implants, i needed to hold off, i couldnt agree , and then after many months my daughters hearing loss began to change, she went from profound in both ears, to severe profound in one and mild-moderate in the other, we can have a conversation unaided.... if i had agreed to that implant, we would never have had these conversations, my instinct was working for us. even with a profound loss she uses phonak sky she is 6 in mainstream school, and has a reading age one year above her hearing peers. i look back now and thank my lucky stars i did not allow my daughter to have ci, but if her hearing deteriorated, it would be something we would consider.... i am just glad we did not lose my daughters residual hearing, that at the time of birth was not recognised or picked up on. it is worth holding of until they child is old enough to have a full hearing test, a new born screening does not cover all levels of hearing!

Anonymous

4/24/2016 10:54:26 am

About 15 years ago I was diagnosed with pendred syndrome so my hearing is going down and I used to wear hearing aids and I can talk and hear aswell but only problem is my hearing is going down...so I had CI 5 years ago and so far...my hearing haven't drop since and I can hear so much more and I'm currently touring with the band and I'm a vocalist. so not all deaf people have success to CI or hearing aids...most of them like to get on with life without hearing and they use sign language to communicate...let them decide what's best for them...

Nancy Beisbier

4/21/2016 07:22:56 pm

If your gdaughter is doing great with hearing aides, leave it that way! My daughter has been implanted and reimplanted. The CI community insisted we didn't sign. Implanting a device into a little girl that was causing her electrical stimulation to her face was no treat. Worse, she had NO language or the ability to tell us the device was hurting her. Finally after noticeable bruising/discoloration and eyelid twitching, I discovered the problem. The audiologist at my daughter's "turn-on" date, said she had more success with autistic children and couldn't understand why she was being difficult at mapping. I was told "she" needed to learn how to listen. The device was so low, she COULDN'T. It took multiple attempts, but I found a surgeon to remove the device. Med-el flew in for the surgery (with a million dollars of product) for re-implantation. They immediately took the device. I despise this company. Not to mention, technology is gaining strides....if you implant, you'll destroy any residual hearing your gdaughter has. Allow her to have amplified hearing. If you have any questions, please feel free to contact me.

Lauren Pearson

4/20/2016 08:19:35 am

This is really insightful, and I think true of many CI users. That said, the experience really varies. My daughter was born profoundly deaf and had a CI at 9 months, a second at 14. Though she had some wonderful speech therapy, she said her first word at 11 months and had 'graduated' from therapy by age 2. She was bopping her head to music within four weeks of having a CI, having heard nothing before in her life. She now lives a very normal life, needs no help in school, swims with the Cochlear swim kit. All I read about when we were considering cochlear implants was how they aren't a 'miracle' cure, but in our case they certainly fit that description. Our daughter is still deaf (and proud of it) but it doesn't really affect her life. How well a CI works and how easily one adapts to it depends on quite a large number of factors and that is very important to note.

Muna

4/20/2016 09:13:45 am

My 20 month son has profound hearing loss and was implanted with bilateral cochlear implants 2 months ago and is just starting the long journey of hearing im so over joyed but as a mother all i can do is worry about his future and this has been a big help hearing from someone who is going through what he will always be going through thank you

Richelle

4/20/2016 09:36:21 am

My daughter was bilaterally implanted at age 1. She is now 7 years old and still doesn't speak. I get upset reading stories about how wonderful everyone's else is doing while she still has no language. We do therapy after therapy and frequent mapping. All I can do is hope and pray that she will speak one day. It's a very long road.

Talia

4/20/2016 12:20:58 pm

I'm curious, no language? Or no English. My son is soon to be 2. Not implanted yet. We've been signing since his diagnosis. He is a language appropriate in that he knows enough words. And grammatically he's advanced in that he now signs in full sentences. So while my son does not speak in English, the happiness in my heart when he signed mom to me for the first time was not limited because it was in a different language.

Jason

4/21/2016 01:25:41 am

Keep signing to your child, my son is so advanced in language thanks to his access to sign language. He does not have an implant but has access to sign language and this has helped so much with his English. As I mentioned in other comment above that my son is a year advance in his reading and written English. This is because of his access to language and he has not missed the window of language development of age 0-7 years. Keep signing and your child will develop language when he can communicate with you. The worse thing you can have is being unable to communicate with your own child. You already are communicating with your child and that will only continue to develop.

Carrie

4/20/2016 12:25:33 pm

Have you been exposed to the world of Sign Language and that beautiful community? The world will open up to her as a place she can fully communicate, come alive, become creative, and be a part of a community where she is seen and known for her talents and many abilities instead of her one inability. There is a life where she can thrive and have full access to communication. While using sign she will tell beautiful stories with her hands, she will produce ABC poems with utmost creativity (a way if 'rhyming' by the shape in your hands instead of the sound it makes) and create complex renditions in ASL, and through full access to that language, it will be easier for her to learn English, as well as easier to learn math and science, etc. It is a beautiful community that I have gotten to become a part of over the last several years. I encourage you to open that door for your daughter and your family aswell.

4/21/2016 01:21:21 am

With due respect, do you think it is time to learn BSL (British Sign Language) and give your child a language? My son who is profoundly deaf and does not have CI. He use BSL and have done so well in school. He is able to communicate and has language, he use an interpreter in school. Thanks to his access to language, he is one year ahead with his reading and written English. He attends mainstream school and he does same as other hearing children. I have heard in some cases that sign language help other children to understand language before they learn to speak. In my experience, the priority is to give language to communicate, not waiting for the child to learn to speak. I know some 'professional' will tell parents not to teach children sign language and that have several damaged the child's future because they have missed the window of language development from age 0-7 years old. Best of luck.

5/7/2016 07:39:02 pm

Your experiences aren't unusual. The public doesn't get to hear these stories as they are swept under the carpet, but they are out there. For that reason, sign language is recommended so the deaf children wearing cochlear implants have an accessible language as learning a language through listening and speaking isn't guaranteed This way no deaf children end being linguistic deprived

Grammar Police

5/7/2016 08:28:14 pm

The phrase is "under the rug." Carpets are secured to the floor.

"So that deaf children.."

Add a period after guaranteed.

"Linguistically deprived."

CIs do, in fact, mimic natural hearing. That is a medical fact. You help no one by professing to know more than actual CI users and medical professionals.

Daphne

4/21/2016 07:50:25 am

Our baby-boy was also bilateral implanted at nine months, we love to see he can hear end started to speak. You can never tell what your child will do, give it the chance to hear, try it! We didn't know what to expect and our son is doing great! He signs and speaks! He is five now and is doing great, if I had the choice again I would do the same and give him the opportunity to hear. Please do that for your child! Give the chance!

Tracy

4/21/2016 08:21:01 am

Thanks everyone for your comments!

Learning Sign Language with or without a C.I. will certainly boost their language skills no doubt about that. The visual language helps with communication (and ease frustrations) now & sets up a foundation from where learning English writing & speaking can follow. I wrote a previous post about that.

To Susan F., if your granddaughter is doing great with her hearing aids & is communicating & understanding, I suggest holding off on the C.i., as it does destroy residual hearing & just wait until if her hearing worsens to where communication is failing.

To "Mother of 2 year old with implants", yes my C.I. Doctor told me everything beforehand too, I was addressing everyone outside of the C.I. Community. I visit my primary care doctor & he expected me to be "fixed" & understanding him by now.

To Richelle, how is she communicating her needs to you? If you are signing & communicating & chatting about her day at school & the like then you're doing great already. Don't be so focused on the speech process. Not being able to talk hasn't stopped many people from being successful in life.

Roberto

4/21/2016 09:41:12 am

Bittersweet.
Yet thanks for posting this, It gave me a better understanding as to what my mother goes through daily with her CI implant and what I will experience after my surgery the 28th of this month.

Martina

4/21/2016 09:49:18 am

Thank you got posting this. My daughter's CI surgery is in a couple of weeks and I think I'm losing my hair about it. I truly want her to understand everything about her surgery, but I know it's going to take some time. My baby is so nervous and starts crying about it. I wish she had someone near her and around her age to just assure her she will be fine.

Martine

4/27/2016 03:50:41 am

Hello Martina, tell you're daughter not to be afraid, this surgery will change her life. Letting her emotions go is great, she will be emotional when she receives the inplant and start hearing again!!!! Tell her when i can do this, she can do it to, many greetings from Belgium ( i got my inplant when i was 47) Martine

James

4/21/2016 11:31:32 am

To mother of 2 year old. I don't care even if it did cured your daugther. You just wait till she older eought she gonna wish that you let her learn sign language not by forcing her into take it. You judge on her life control her. You re the one should have learn sign language! You have no rights to making decisions on your daugther. It is for her to decide! I am 100% against it. You belive doctor than you don't understands how deaf life like. You think they are low people? You re wrong. She will have learned very fast if you stop wasting her times on listening and speaking she won't make it to college or university it will be on you! You taken her natural life as deaf person you took that away from her.! Understood! You piss me off over note you wrote on this lists! You start listens to deaf people! We knows a lot more than Hearing people they don't know what to do with deaf childs playing their life more risk.

Betty Jo Lill

4/21/2016 12:00:26 pm

My daughter has 2 cochlear implants and I agree totally with your blog. The first time her first was turned on, it was a disaster. Not at all what she was hoping for and such an emotional let down. Several years have passed and she is still learning new sounds. It took a lot of patience and fortitude and hard work. She benefits greatly but it took a long span of time to get where she is today.

4/21/2016 05:36:18 pm

Going through this now. "You only get out what you put in" was never truer.
"So there you have it, the reality of a C.I. It’s the same as any other medical restoration. You don’t expect that patient who just had knee replacement surgery to suddenly jump up and start tap dancing after their stitches are out do you?"
I shattered my elbow a couple of months ago (second time; the first time was in 1987 and I never took PT seriously enough to get full range of movement back). Only recently started to enjoy (mostly) pain-free living. Then I said to my therapist "Can I get full extension?" and now I have a splint that is definitely NOT pain-free. But if I don't put in that effort now I won't have another chance to get that full restoration. Your positive thoughts are helping me to keep working--thank you!

Sharon Crouch Edmondson

4/22/2016 08:12:17 am

I was so sorry to hear your experience. But I do know this is not the norm. Especially with children we have had moms with children and dads with children share their experiences With our HLA Ft. Worth chapter these children have done so well and have been mainstreamed into public school. Also the children have spoke and you would never know by their speech that they are wearing a a Cochlear implant. Also the children have spoke and you would never know by their speech that they are wearing a Cochlear Implant. I was suddenly different at 60 years of age. My implants were very successful in only a few days as my auditory nerve was still very much alive . Some do have to work harder than others but that most all have a success story to tell. It is unfortunate that it cannot be a 100% device. But it has brought many of us to a place where he where he would never turn back the clock to hearing aids.

Leigh Ann

4/22/2016 02:02:09 pm

Hearing aids are more safe then C.I.
My friend who Deaf with C.I. She died 6 year ago. Cause from baterica inside of C.I. I thought C.I. was safe but not. Now, I lost my good friend. I heard there are more happen in USA, and Asia
I don't want to see lost your love one.

Deborah

4/30/2016 10:28:18 pm

Marlene, With you being an educator you should know that they do implants with hearing preservation. It is a longer procedure but has a 90-95% success rate. Our granddaughter was just implanted at Stanford University Hospital and is doing amazing. Please be cautious with what you post being in the field that you are. Please, Please do your homework. Blessings

5/7/2016 08:57:12 pm

Grammar Police,
Have you considered that English may not be that person's first language?
They could be Deaf like me & had oralism forced on us & denied sign language in the beginning. This deprived us from understanding English fully.
Secondly I AM a CI user & am speaking of my experiences as well as from those who've expressed this in various forums.

ruth mills link

5/12/2016 10:07:10 am

my son just had his cochlear turned on yesterday may 11th. he did hear beeps.. he is 23 and heard until last july.. I was a bit disappointed he only heard beeps.. and so was he..my question is how long before the beeps turn into words.. he is blind also so it will be even harder to help him understand. He is blind and deaf from a terrible disease called IH which is too much fluid on your brain. it kills your nerves cells. its so frustrating as a parent not being able to help since we are so new to this.. any suggestions would be helpful.. and appreciated..

Sharon Crouch

5/12/2016 12:13:28 pm

I really wish I could come here and tell you a definite answer. But as you know things do differ. Having said that with him being so young I would think that would be on his side. The other thing I really believe in is prayer. Which I am going to be doing as you read this. Just hang on he did hear beeps that is saying he can hear sounds. And for him at this time in the sound will make him more aware of his surroundings. Many of us will be pulling for you and your son please keep us informed I am believing for The best. SharonC

5/12/2016 02:41:47 pm

Hi,
It will take some time for the brain to start translating the beeps into actual sounds. Could be weeks or months.
You said he was hearing until last July, then the process might be faster for him with "hearing memory".
Just keep playing background music or the TV for the simulation and both have patience.
Tracy

5/12/2016 06:37:56 pm

Told you so. None of you parents listening us deaf people we already warned you all for years! Now see what a waste money and other who has it will have holes back their head rest their life thank you all parent for ruined their life by your own decisions made for those child we keep tell you not to. You all think ci is a cure for deaf people this all lies. I don't understands why none of you listening us. Now is too late. Your child life been ruined now who I am gonna blames on? The doctor? Ahh nope. I blame both doctor and parents for not follow us refuse taken us as warning serious. Over 300,000 has ci now. This is big times mess up! Now I think that every person who has ci by you parents they can an rights to sue you for ruined their life never let them learn sign language. Sad. I will give my full supports to anyone who got ci unexpected by parent decision. They all should sue all parents for made decision without talk them first see if they want ci or not. Child can sue their own parents than parent can sue doctor to pay all their child for ruined their life for money. To all parent please remove ci all child now! We will make sure your own child will get to learn their own sign language without your permission. All childen should have learn signs not damn speak listening this will not heal us. If some you don't agree with me I understands. This what I see my veiws. I remember once I went store somehow met little boy he only like 4 year old had ci the parent walk with him I asked this little boy do you know signs? He act like huh? Had no idea what I am said than who I looked at of coruse parents. I asked them why he not learn signs they said no we don't want to we want him to speak and listen get me very very angry I yell at them I said this not who he is. He is deaf. He has rights to learn sign language not by speaking listening angry all people at store went whooa! Relex! I walked out the parent said nothing realized what they have done. If I see any one of you walk with child whose had ci. I will walk to you I am gonna talk you front everyone. I am gonna make you look so shupid! That a promises! If any of you said ohh I didn't know to me this is an excuse all parents always do double check before made decide. Should have came to us first we know a lot more what he best for your child not by doctor they also hearing they just don't get it. They call it as cure. To us that not. Sign language is cure for deaf child all of them ! To speak listen you just making their life even harder life. Losing a lot their ed. So once all childen become full growing. I promise you I will make sure they will be all taught to sue all their own parents for made decision put ci on their back head without ask them first. This a promises! This for you for refuse listen us don't belives us. Than you are the most dumb parents I ever see! I am so suprise that we as deaf parents are even more smarter than you. We always made right choices for our child you all seems cant. Fool!

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