Study finds typical patient related factors are NOT indicative of CI success

[Mary Beth]

I am glad this is getting attention.  There are too many of us (me included) that end up performing way better than the patient related factors would suggest prior to surgery.  It is time to stop using patient factors that no longer are indicative of CI success.  
 

It is time to identify patient factors that are indicative.

 

Many people do not seek CIs because of...

-number of years the ear was not processing sound 

etc.

 

Best quote I have seen from a CI surgeon in a PPT professional presentation (sorry I do not recall his name)....

”The only way we know we have implanted the better ear, is to implant both ears.”

 

https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/2765789?guestAccessKey=5a717407-1528-4571-9279-a02eb69b48fe&utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jamaotolaryngology&utm_content=olf&utm_term=051420

 

[Kylie]

Hmmm so what IS most predictive? Or is that unclear?

[Mary Beth]

@Kylie

Exactly!  Clear as mud.

[Mary Featherston]

That confirms what I'd been thinking too.  Both my ears perform really well with CIs, though the worst one hardly got any sound for the last ten years prior to implantation.

[Mary Beth]

@Mary Featherston

Since so many of us are being called “exceptions”, it made me question the validity of those parameters too.  With modern day CIs, they no longer seem accurate indicators of success.

My right side had not processed any sound for 24 years and scored 0% on speech testing prior to being implanted.  And the electrode array is medium 24 mm and they had to drill through my cochlea because the round window was obstructed.

My right CI is awesome.

[Jewel]

I'm curious how it would be if I was able to get my other ear implanted. That ear has been profoundly deaf for over 10 years. I was losing my hearing from about 10 years before. I never used a HA in it. 

I remember at my activation they told me I probably wouldn't be able to make out speech for a year! That was scary! Fortunately I surprised the audi the following week! 

It's funny now.. I've lost most of my residual hearing in my implanted ear but I'm still able to hear a bit with my nonimplanted ear. Not much but if I snap my fingers by that ear I can hear it.

So I agree that you can't make a full assessment as to which ear was better unless they are both implanted. 

[Mary Beth]

@Jewel

They would not implant my right ear (the first side) unless I would be happy to just have that implanted ear help me speechread.  They expected no ability to understand speech with that implanted ear ever.  It had a lot going against it.  We almost decided not to have the surgery.  
 

And this was a conversation with a well respected and published CI surgeon at a renowned CI center.

 

I am so happy my right ear beat the odds.  
so many of us do beat the odds.  
 

There is still a lot to learn about predicting success with CIs.

[Jewel]

@Mary Beth

It was at the preop appointment that my surgeon decided to do my "better" ear. Since I was self pay and could only afford to do one ear, he said better to do the one with the better chance of success. Even he was surprised at how quickly I was able to make out speech after activation. 

I have read about people who even after months or years after implantation, the CI is not much help to them. I can't figure out why theirs didn't work well. 

Do you know of anyone who was deaf for 40 years and their CI implantation was a success? 

[Mary Beth]

@Jewel

So many variables.....

40 years .....no hearing prior to that?......then a CI......

the other ear deaf too with no hearing prior to deafness?  I ask this because our auditory pathways actually stimulate both auditory regions.  One side receives a lot more of the stimulation but there is a cross over.

I will have to think on this.

Definitely have read reports from happy CI users whose ear had been deaf for 20-25 years.  I’m not sure if I have seen a report after deafness for 40 years.

[Jewel]

@Mary Beth

No I was thinking born with normal hearing, then hearing loss in teens or early adulthood then profoundly deaf for 40 years then CI. 

Scenario 1 - HA in one ear.

Scenario 2 - Never worn a HA. 

[Mary Beth]

@Jewel

have you seen this?

 

https://pubmed.ncbi.nlm.nih.gov/24286130/

[Tommy C]

I think that some audiologist want you to have low expectations going in. I know that in my case their pestomistic expectations at the first surgery center that I went to caused me to back out. My daughter wanted me to try a different surgery center and got me an appointment. That audiologist was just as negative as the first. I was about to cancel out there too but the Doctor was more positive. I had 0% speech understanding on the test, the Doctor told me that he thought he could get me 65 % . I also met with a ci recipient that was very positive and had great results, just so happened to used the same Doctor. I went through with it and was assigned a different audiologist . At 3 months after activation my speech understanding was above 80% and is probably better now. I think they are doing a great disservice to their patients by giving low expectations. Just my opinion.

[Jewel]

23 hours ago, Mary Beth said:

@Jewel

have you seen this?

 

https://pubmed.ncbi.nlm.nih.gov/24286130/

Interesting. Thanks for sharing @Mary Beth

[pdk]

If you are deaf and can afford it, why would it matter what any one thinks. It can only get better. 

During my assement everyone was positive. 

[JosephG]

@Jewel @Mary Beth 

Was reading this thread and I pretty much meet the conditions in my left ear for what you were discussing ("...born with normal hearing, then hearing loss in teens or early adulthood, then profoundly deaf for 40 years, then CI") . So I figure I'll share my experience...

The only thing I'm uncertain about is whether I was born deaf in my left ear or whether it progressed rapidly during early childhood (my parents have said there was no mention of hearing problems at my birth). However, I do know with certainty that I was already profoundly deaf in that ear by early elementary school (normal hearing in my right ear though) and I have auditory tests from as early as 9yrs old to attest to that. As such, I never wore an HA in that left ear (it wouldn't have helped), and it's been just shy of 40yrs before I got a CI in that left ear. 

So fast forward now and it's been about 10mos since my activation and my ability to distinguish sound with my left implanted ear is now fantastic. I can hear birds (different trills, pigeon mating calls, etc), cars, the creaking of wood panels on staircases or floors, water dripping, etc. I can listen to music that I've previously heard and hear both the lyrics and instrumentals quite well, certainly to the extent that I can enjoy it in that ear alone (streaming). Newer (unknown) music still presents a challenge though. 

Now...pure speech comprehension is another thing. With context/visuals/lipreading I can get by doing basic things and conversations with my left (40yrs deaf) ear alone. But I cannot talk on the phone with that ear and when someone covers their mouth (like with a face mask) it's very difficult for me understand anything at all. My masked word comprehension and sentence recognition would reflect this reality, still being very low-to-nonexistent scores. The reality is that words still sound a little bit too similar (dull?) to one another ... it's not easy for me to distinguish monosyllabic words, for example, and speech can be too 'fast' for that ear. But the ability is by no means completely absent. I can listen to Audible books and "hear" the sentences and find my place in the text (though it's not always the easiest thing). Podcasts similarly, I get words here and there and some sentences, I know who is talking (male/female etc), but it's not yet clear what they are saying at all times.

All that said, this is leaps and bounds beyond what this ear has ever been able to do, and I think with time it will continue to improve in terms of comprehension. But do I think it will ever be anything like my right ear in terms of capabilities? Likely NOT. About 40yrs of not hearing and possibly little linguistic development on that side (though excellent linguistic development on the right ear) probably has left the pathways there a little rough for the taking and I'm not entirely sure the grooves will ever fill out properly. But I'm hopeful and I've seen fantastic progress in this ear in only 10 months already.

To wrap up this long story, if anyone profoundly deaf asked me whether they should consider a CI given long-lead times of deafness I would without hesitation say they that they should jump at the opportunity. Merely getting sound recognition capabilities alone is itself a huge improvement. But those individuals should also have realistic expectations, particularly if their deafness preceded linguistic development, even if only on one side. Complete language rehabilitation might possibly be out of reach, physically speaking, though by no means appears to me to be a certainty or guaranteed insurmountable obstacle, in my humble opinion. So I hope these thoughts help some folks.