Anyone here with a Cochlear implant regretted it?

Firstly: They don’t recommend getting CI for the profoundly Deaf with no hearing language skills. It is one of the contraindication for getting CI…

Secondly: Medical community learned to not implant people who that have no hearing language skills and those who not have realistic expectation or the willpower to go through the process of rehab…

Thirdly: we have like 50 years of experience with CI since they were introduced.

First off I’m not sure what profoundly deaf means. Second of all have had a profound loss for 15 years and have been recommended to getting an implant more times than I can remember. Last but not least what is hearing skills?

Individuals who have been profoundly deaf since birth and have never worn hearing aids will not have good outcomes with a cochlear implant. The auditory system simply doesn’t develop and other systems in the brain start to move in and take over that area for other things.

Similarly, even for someone who is post-lingually deafened if they go for long enough without hearing aids (auditory deprivation) other systems in the brain will start to move in to make use of what was previously used for hearing. So the longer you go (years and years) without auditory input the poorer your outcomes will be.

And then. . . anyone for whom a cochlear implant actually FAILS will be unhappy with the results. This is a small but present group.

Speaking of doing it sooner than later My audiologist recommended me to get CI eval 1 year before I was implanted. I took the eval, my case was borderline, high chance of denial by insurance co , and I knew about the brain plasticity changes so i went ahead and did it so my odd are in my favor…

Hello, new to the forum here. However, Neville’s post should be somewhat disregarded. I have been deaf since birth, got my first cochlear implant at age one, and today I hear and understand sound on a completely normal level. The result that a CI recipient experiences is largely going to depend on how aggressive they are with follow up rehab/therapy. We pushed my follow up rehab/therap hard, and it brought awesome results. Go for it, but be agressive with your therapy.

@user250 said:

I have been deaf since birth, got my first cochlear implant at age one, and today I hear and understand sound on a completely normal level.

Key point is you were 1 year old thus you were well in the developmental language milestone of your life and we are talking about older people, who are well past the developmental language milestone.

@user250 said:

However, Neville’s post should be somewhat disregarded. I have been deaf since birth, got my first cochlear implant at age one, and today I hear and understand sound on a completely normal level

This is not correct in my reading from those getting CI.
I tend to agree and disagree with how long a person has lost their hearing and CI working well. I have read both good and bad. It still floors me to read about someone who has been deaf from birth and gets a CI many many years later and learns to hear. It typically takes time and lots of effort.

It’s all about how bad you want to hear and understand speech.

2yrs ago I received a CI for single sided deafness. Do I regret it yes but not for the reasons others think. I made it clear to the Audiologist before making my decision that I wanted something simple as I am not tech savvy. I originally wanted something to equalize sound but the ENT suggested this would be better.I was never informed about the need for auditory rehab and how vital it was for success. I was told all I had to do was wear it and I did 12hrs/7days a week. After 8 months my score were still very low and after going on this forum I realized what I wasn’t doing was the rehab. I approached my audiologist about auditory rehab. She showed me sights to use to help. I went and purchased a tablet. I don’t even own a cell phone. I felt very frustrated and I tried on my own.I was continually told that she had other CI patients that did very well just by wearing it. After 2 yrs my word recognition is 25%. ENT suggested removing it. I had numerous side effects after implant. loss of taste,ringing in the ear and numbness of the ear so I will not have it removed. I don’t know your age but if you are willing to do the work, and there is alot of it you will find many benefits to having it . just make sure you ask alot of ques and and have them go over what YOU need to do to make this work. I was ignorant going into it and shame on me. I needed to be honest with myself of what I was willing to do. This is why I said it was not for me. There are so many people on this forum that have wonderful advice and suggestions but in the end it comes down to what you are willing and able to do. I wish you luck and I hope it all goes the way you want.

Couldn’t agree with you more @Raudrive - well said!

Great thread and sorry so late to the conversation. I have been evaluated for a cochlear and am somewhat hesitant about it. I still have good hearing in my right year but left is just noise. I have seen the negatives on the web and agree that some of these people are just plain negative and not interested in the rehab. It’s interesting that’s for sure. I’m leaning away from it. I’m kind of a loner who steers away from group meetings and outings, things like that. If a person has any accent on the phone I just apologize and hang up. I can’t hear them at all. Very interesting group of people you all are…

I think almost everyone gets some benefit from a CI. The biggest thing to consider when you're doing this is whether you're ready to give up whatever residual hearing you have remaining with no guarantee that you'll like the new reality much better. I thought the old guideline of 40% to qualify for insurance coverage for CI surgery was a lot. 60% is a ridiculous amount. I was sort of railroaded along when I scored 28% with my poorer ear, in noise. A good bit better than that quiet. If I had known 5 years ago when I did this that my CI was not going to understand music and my tinnitus on that side would still manage to make it garbled and very difficult to use without my HA ear I might not have done it yet. This is becoming a very popular solution they're selling to people who are somehow not educated enough before they're implanted and then suddenly upset when it's not what they'd hoped. I thought I was ready to try this, but I didn't realize the surgeon didn't automatically attempt to preserve residual and hadn't considered what I had worth trying. I could use that back now. I'm not completely sorry I did it, but a little. It does help in some ways. But my Phonak aids would probably still be almost as good if I had just learned how to stream phone and TV then. Good luck to all!

@ruthi67 said:

I thought the old guideline of 40% to qualify for insurance coverage for CI surgery was a lot. 60% is a ridiculous amount.

This is a preliminary criterion, not something set in stone and definitive.

The 60/60 criterion is not used for final qualification for CI, but for a quick and efficient assessment of which patients are highly likely to undergo CI evaluation and get benefits from CI implantation with high probability (but not with absolute certainty, because it is impossible to obtain in biological and medical sciences).

So please don't make authoritative statements, because qualification for CI is more nuanced than 60/60 rule, which also It has a good foundation, apparently better than the old 40%.

Not providing patients with information that rehabilitation is needed is a separate problem that needs to be fixed in a specific clinical center.

@Bimodal_user said:

Not providing patients with information that rehabilitation is needed is a separate problem that needs to be fixed in a specific clinical center.

Old thread but relevant.

This is so true. Failure to teach CI rehabilitation falls into the audiologist domain. Maybe new procedures for rehabilitation throughout the CI audiology sustem.

Something I can add to this is everyone learns differently. The typical CI rehabilitation from modern audiologist uses reading and listening as rehab. This is not at all good for many who do not like to read. Other rehab practices need to be brought into the CI rehabilitation. Another needed tool for rehabilitation is to separate the CI from the other ear for rehabilitation.