Has your cochlear implant experience differed from what is commonly reported?

[Mary Beth]

I like reading research about cochlear implants and also enjoy attending workshops/conferences/virtual meetings about CIs.  Sometimes I am taken back when what is reported differs greatly from my personal experience with CIs.

Has your CI experience differed from what is commonly reported?  If yes, in which ways ?

[Mary Beth]

Here are some differences from my CI experience

 

1.  My right ear had not processed any sound at all for 24 years prior to being implanted yet it is an amazing CI ear.  Common reports state that length of deafness without amplification leads to poor CI outcomes.

2.  My hearing with CIs has continued to improve over each of the years since activation.  I am presently in year 9.  Common reports are CI progress caps out at one year post activation.

3.  I hear best in omni mic setting.  Common reports are users do best in settings that manage and dampen background noise.

4.  Music sounds amazing with my CIs and I enjoy brand new music a lot.  Common reports are limited music enjoyment with CIs and that familiar music is best.

[Lauren]

1. I used HAs for about 25 years with steadily declining hearing during that time. The amplification I was getting steadily decreased with more powerful HAs. 

2. I haven’t capped yet. Had some bumps in the road with my left ear but just over 3 years with my left and approaching the 2 year mark with my right. 

3. I have to constantly adjust my settings to fit the listening environment I am in. My brain has never been able to filter out noises and still hasn’t figured it out so I have to do what I can with technology to help it out. I’ve made progress though and will continue to make progress.

4. I’m still working at music. Mostly have to remember to be in an Omni mic setting when listening otherwise music might sound a little off. When I remember to have my processors in Omni it sounds amazing. 

[Michael Shipman]

I have been unable to hear anything in my right ear for the past fifty years. In April, it was activated, so I have only been using it for five months. I still have a long way to go, but I am already surpassing my audiologist's expectations. Now, I can hear sounds and voices. I can even engage in conversation by lipreading with just my right ear. Mary Beth mentioned that her hearing with her cochlear implants has continued to improve over the years. I hope the same happens for me.

[Michael Shipman]

I should add: For someone who hasn't heard anything in one ear for fifty years, getting a cochlear implant is strongly discouraged among professionals. I am very fortunate that my audiologist, my surgeon, and MED-EL representatives were not hesitant to give me a chance. I greatly appreciate the support from my exceptional team. Every day, I am so amazed and thankful to actually hear in that ear. I'm looking forward to becoming bilateral next week.

[Mary Beth]

@Michael Shipman

looking forward to following your bilateral story!

[Tim]

Interesting topic.

I am about 20 months post activation.  LMy experience and outcomes seem to match the commonly reported outcomes and expectations. 

I started to lose hearing in my bad ear 16 before implantation and still got good results. I had heard occasionally about the ten year rule for hearing loss that the brain would not use the nerves input and that after this time, a CI was not a good idea. Glad to hear that @Michael Shipman has had such good outcomes despite exceeding that guidance by a factor of 5.

Based on discussion in Hearpeers and elsewhere, it seems like exceeding the 10 year rule is the commonly reported outcome.

Unlike @Mary Beth, music is still far from good for me but like she said, I think mine is the more typical case.  I wonder if part of the problem for me is being SSD, I can't help but compare it to my good ear and it will never be as good as that. I have some songs that sound okay and some that sound good/recognizable favorited in Spotify.  It is now up to about 160 songs combined.  I am sure I would be happier with music quality on my CI if I was not constantly reminded of what it should sound like.  I'm still working on practicing music.

I guess one thing that isn't commonly talked about is vertigo.  BPPV gets talked about vestibular hypofunction isn't a commonly reported outcome.  I've had a few episodes and had vestibular rehab.  Seems to be well controlled now. 

Other than that, it seems to line up very well with commonly reported outcomes and expectations set by my clinic. 

 

[Michael Shipman]

 

I've told my friends that one advantage I have is that I don't know what normal hearing sounds like. Unlike @Tim, who has single-sided deafness (SSD), I can only compare my deaf ear with my other ear, which has severe hearing loss. I have a friend who has been deaf in one ear for over 60 years. If she were to get a cochlear implant, I'm worried that she wouldn't like it because it might sound too different and inferior compared to her other normal hearing ear.    Getting a CI for her would be discouraged.

The success in being able to hear in my deaf ear with a CI comes from being able to have a long conversation by lipreading. Since I recently had CI surgery on my left ear, I have to rely on my right ear for hearing until my left is activated. It's not easy, but I am surprised at how well I am doing and actually enjoying it.    Music doesn't sound good, but I still listen to Bach daily.  But, my microphone is on an adaptive setting. The next time I see my audiologist, she will create an omni setting program.

I believe there are many factors involved in commonly reported outcomes and expectations, as well as the level of success in a particular situation.

[Michael Shipman]

Also, what is commonly reported is that cochlear implants sound like Mickey Mouse. I wouldn't describe what I am hearing as Mickey Mouse. Is that an advantage with MED-EL's longer electrode array? What is your experience?

[Mary Beth]

@Michael Shipman

There is a wide range of what speech sounds like to new CI users.  A few people report natural sounding speech right away or very soon after activation but that is rare.  Most describe speech as sounding “off”.

robotic 

Darth vader 

Mickey mouse

R2D2

 

[Lauren]

@Michael Shipman

I didn’t get Mickey Mouse either. I got more Darth Vader and lower/flat voices with almost no intonation at the beginning. I described it as I could understand people just fine but if I couldn’t see my own relatives speaking I would have no clue who I was talking to (eg parents, sister, and so on).

With aural rehab and additional mappings everyone’s voices is normal now and everyone sounds natural/individual. 

[jcech344]

Prior to deciding to get a CI, my word recognition was down to 10% or less.  I survived primarily by coping strategies (lip reading, avoidance of large groups or noisy environments, use of LIve Transcribe). But this was becoming too unreliable and difficult, so I made the decision to have 1 ear implanted.

In researching CIs and CI companies, 2 benefits stuck out to me - significant improvement of word recognition and residual hearing preservation.  On the later ME stood out with their array design and emphasis on longer array for more frequency coverage. On word recognition I would read how people went from 20-30% to 70-80%.

After implantation and activation I could tell that my word recognition clearly improved as measured in apps like Hearoes or Amptify, Within a few months I was hitting 80% or better often, but I felt I was still struggling in live situations understanding some speech, esp when the speaker was not facing me.  Phone conversation were marginally better.  I came to the realization that I was not measuring my performance in these apps the same way it was pre-CI.  An audiogram is taken in a sound booth with words (usually single syllable) spoken in 1 ear at 50 Dbl.  I would then have to repeat what I heard.  The word tests in most of these apps provide visual clues.  I was picking the word from a group that I would read, so I was able to limit the universe of words to 2 or 3.  A much easier task.

To provide a better comparison I took these tests over a week without looking at the word choices saying I thought I heard first, then looking and selecting the best one.  What I discovered was that my correct word identification dropped to 30-35% without visual clues, but were 95% with those clues. This is in a quite environment. I have attached an excel spreadsheet that shows this. So basically the CI has brought me from 10% to 30-35%, an improvement, but not as much as I was expecting.  I felt I was struggling with certain letters (M, N, P, V, G).

All this prompted my to question how I was doing my rehab using only these online apps and now I started seeing a speech therapist recommended by my audiologist who specializes in CI rehab.  My goal is improvement beyond what I have experience over the past 9 months.

Hearing therapy (word recognition).xlsx

[John F]

Yes but I blame my medical team for not telling me key findings which would’ve impacted any decisions.

[Mary Featherston]

On 9/12/2024 at 1:31 PM, Mary Beth said:

Here are some differences from my CI experience

 

1.  My right ear had not processed any sound at all for 24 years prior to being implanted yet it is an amazing CI ear.  Common reports state that length of deafness without amplification leads to poor CI outcomes.

2.  My hearing with CIs has continued to improve over each of the years since activation.  I am presently in year 9.  Common reports are CI progress caps out at one year post activation.

3.  I hear best in omni mic setting.  Common reports are users do best in settings that manage and dampen background noise.

4.  Music sounds amazing with my CIs and I enjoy brand new music a lot.  Common reports are limited music enjoyment with CIs and that familiar music is best.

Hi Mary Beth!  I need to come to the forum more often.  But I'm with you, I continue to see improvement, in my sixth year.  And like you, I prefer the omni setting, and will use the directional dampening settings only in noisy surroundings (mostly restaurants).  And yes, music is great and continues to get better.  I've been listening to new (to me) music too, and enjoying it.

[Mary Beth]

@Mary Featherston

Always great to see you here!