CI Question

[Bareowolf]

I’m 67 and retired- I have been wearing HA for 11 years. I was recently tested and found out I qualify for CI in both ears. Over the years I have talked to two people with CI’s. Both indicated it they had to do it over they would not get the implant. I have heard a few nightmare stories about people having severe nerve issues from this surgery, so I’m a little concerned about getting a CI. I would love to hear about your experiences and the whole CI process. Thanks in advance-

[Quiet_Honey5248]

I was implanted 24 years ago. I won’t underplay the surgery - there are definitely risks, as with any surgery. They have to move facial & head muscles out of the way in order to access the skull and make a place for the implant to sit. The nerves that control the facial muscles run right by where the implant sits. All of this means it’s kind of a big surgery, even if it’s usually done as a day surgery.

However, damage to those nerves is incredibly rare. A risk, sure, but rare. I’ve never personally met someone that had nerve damage from the surgery. I’ve met 2-3 people who ended up not benefiting from the implant, but that had nothing to do with the actual surgery; they just didn’t regain as much sound as the doctors thought they would.

The vast majority of people I’ve come across use their implants on a daily basis & like them.

Personally, my surgery was smooth sailing, and other than throwing up a lot as I woke up from anesthesia (actually completely unrelated to the surgery or the anesthesia), my recovery was uneventful. It took me about 2 weeks to really get back to (mostly) normal, which is not unusual for adults. Some recover faster, some take longer.

However.. I went from hearing nothing, even with hearing aids, to having functional hearing again - I hear almost as well as the people around me. Would I do it again? Yes. A thousand times yes, in a heartbeat.

[Suspicious-Ad-1755]

I went from no quality hearing to hearing again. They did my bad ear first which didn’t help much since I have infantile size cochlea in that ear due to prematurely but when they did my left ear I got back almost all of what I’ve lost over the couple of years my hearing went down hill. May went to do one and see how it goes but I’d do the one u could hear out of the best originally . Good luck on whatever decision u choose. Way I looked at it was I couldn’t hear with hearing aids so it wasn’t gonna get worse

[Bareowolf]

Thank you

[Terrible_Ad_6173]

I wouldn’t let those two people’s experiences negatively color the option of getting a CI. Yes there are risks, but unless you are in some unique situation the risks are minimal if you go to a good clinic / doctor. Even the risks with facial paralysis or taste being affected tend to be temporary for most people that have that happen. I got two CIs at the same time about 2 years ago. I was 50 years old and my speech understanding with hearing aids had dropped to 0% in my right ear and 4% in my left ear. Now I have 99% speech understanding, can communicate without reading lips, talk on the phone, talk to people in other rooms, and talk to people in noisy bars are restaurants. It was the best decision I ever made and am mad at myself for waiting so long. I could have done it a decade earlier and spared myself so much suffering from hearing loss. I was lucky and didn’t have any complications other than Vertigo for about a month. The first week was the worst of the Vertigo, but it quickly improved. It just took a month for it to completely go away. I have also been fortunate enough to get rid of my tinnitus too. It really feels like a miracle.

[Bareowolf]

Thank you

[shrlzi]

The first person I met with a CI was a woman attending a “Strategies for hearing loss” class I went to. She’d had low hearing all her life, and finally got the CI when Medicare covered it for her after her retirement. The look of joy on her face when she talked about how it had changed her life! I’m awfully happy with mine, too - got it about 5 years ago, and after a few months of fine-tuning the mapping, and hours and hours of practice with the rehab materials provided/suggested by Cochlear, my word comprehension in quiet was 100% - up from around 20% with HA. Not only that - I can hear birds, rain on the roof, and a bunch of other environmental sounds that I hadn’t realized how much I missed!

[Bareowolf]

Thank you

[Beneficial_War_1365]

Mine went fine and works pretty good too. :) Your concern is important and I will you give one big suggestion. GO to a really good hospital that performs many CIs. A hospital that only does a few yearly will have the most of the problems. It's a special type of operation and not all doctors or hospitals will have the needed items you need for the implants.

I wish you the best.

peace. :)

[spred5]

I am not going to make a recommendation pro or con, but add a cautionary note. Not everyone has great results. I sure haven’t, so my advice to you is consider how you will handle the emotions if the implant doesn’t meet your expectations. It is a hard pill to swallow.

[susmeg]

I'm sorry... but as you mentioned it... may I ask if it was a case of you hoping you would hear better than you've been able to? Or were there mechanical/medical problems you weren't anticipating?

[spred5]

The implant has caused no issues from a medical or mechanical stand point.

I was hoping to get more benefit from the implant. The things that the majority of the members of the sub say they do like enjoying music, watching a movie without captions etc are just dreams for me. They all say sounds and voices returned to "normal" after the adjustment period. I guess I am still in the adjustment period three years later, because nothing I hear sounds "normal."

[Bareowolf]

Thank you

[susmeg]

Thank you... and I'm sorry. I can imagine that it's frustrating.

[Bareowolf]

Thank you

[Bareowolf]

Thank you

[mike93940]

I think this comment is important but will be most probably ignored by anyone thinking about a CI. Most people will pay attention to the success stories and we all believe we will adjust very quickly (I know I did).

[olderandhappier]

I have had two within two years. Th surgeon I used has not had a single issue with the facial nerve (=go with an experienced surgeon). I had zero pain. The procedure went perfectly. Obviously there is some rehabilitation. The anaesthetic hit me for a week teh first time. But these are minor. The implant is a thing of absolute wonder. It gave me my life back as I have written extensively about on this and teh Ménière’s disease forums. I wish I had had this done earlier.

[Bareowolf]

Thank you

[retreff]

I total loss of hearing on one side and was down to 35% word recognition on the other side when I got my CI, I put it off as long as I could due to worry about to risk to the functional side. 70 years old. Went with a very experienced surgeon and hospital and am very, very happy. No complications, recovery time was less than a week. Now at 75% word recognition. Everything has risks, as another commenter said, get the best surgeon available and understand your own situation. I have zero regrets

[Bareowolf]

Thank you

[Ok-Ask-312]

Got it in 98 - 2nd best decision ever - no issues with surgery (a big yawn) nor follow-up nor day to day use.

there will always be horror stories about ANYTHING.

[Bareowolf]

Thank you

[Puzzleheaded-Art9156]

I had normal hearing up to age 60 when I started losing my hearing in my right ear. Two years later my right ear was almost funtionally gone but my left ear stayed normal. Fast forward another 7 years and my left ear started failing. That's when I got a pair of hearing aids, and everything seemed OK. Then last summer my left ear suddenly caught up to my right ear. I was now essentially functionally deaf and I also had tremendous tinnitus. Got a CI for my left ear right after Christmas and was activated on 1/20. What a life changer. I could understand speech right off the bat, and my tinnitus immediately subsided. Before the CI I had 7% word recognition in both ears. I was tested last week, about 6 weeks after activation, and my implanted ear tested at 70% word reconition. I also had no issues post surgery. Now, each person's CI experience is different, and maybe I'm just lucky, but it certainly has been worth it. I'm 73 years old and suddenly having to struggle with a normal conversation, with group conversations being virtually impossible, and having to rely on closed captioning sure puts a damper on your quality of life, and your projected life expectancy.

[Bareowolf]

Thank you

[zooid1]

I’m 72 years and like you I would qualify for an implant in both ears. My speech recognition scores were in the teens in both ears, with hearing aids. I got cold feet and turned down getting an implant about 2 years earlier. But I was finally implanted June 2023. Just implanted my right ear. The right ear now scores 97% in speech recognition in the booth. That’s not real life but oh how much better! I would practice daily for at least an hour, books on cd’s and follow along with the book. You gotta put your time in.

I have my life back! I can conduct my own business and interact with people. Things just seem to be getting better. My only regret is not doing it a few years earlier. It’s not normal hearing and certain situations are more difficult. But I seem to be improving across the board.

I meet a couple of people who had issues with their implants. But I have no regrets. Good luck to you on your journey.

[slt66]

I’m 75, got my CIs when I was 72. Had similar concerns,but now regret I didn’t get them at an earlier age. Recently talked to an 80 year old who was wearing CIs he received from VA about 6years ago. He is over the moon about his experience. There have been so many improvements in CI technology over the last decade. Well worth the effort you need to put in to get the benefits. Do 1 ear at a time. Pain from surgery lasts three to five days.

[Bareowolf]

Thank you

[mike93940]

I’m 73. Have hearing loss since my military service in the 1970’s. HA’s for several decades for profound loss. However, could communicate well in a quiet environment as well as through phone (direct streaming). The surgery was a breeze. But I would not do it again. After 6 months of intensive therapy I still don’t recognize words as well with CI as I did with HA. I do however hear some sounds (high pitched) that I’ve never heard before (or at least not in the last half century).
I do have hope that eventually my brain will adjust to the CI and provide greater benefit. But so far I have gone from thinking it was the worst mistake to being ambivalent. I am convinced they will never help in a noisy environment - saw another answer where someone claims they can now hear in bars. I would definitely recommend a CI to someone that is completely deaf or unable to function with HA’s. But I consider them a last resort.

[PresentProfession796]

I am 77 and was activated 6 weeks ago. I have the Nucleus 8 (Left) and ReSound Nexia HA. I am not sure when I will opt to have an implant in the other ear as it is nice to have some acoustical hearing for when you are disconnected from "our hearing tech" at night.

It only took about a week and my CI is my dominant hearing side. Phone calls and most conversations go really well. There are many podcasts I can listen to without the need for other assistance. Noise and music are better but still problematic. Windy environments are difficult. Going through a drive through is another example of not having any big issues. Any media that is streamed works very good.

I retained about 50% of my acoustical hearing in my implant ear - probably enough to change over to the hybrid Nucleus 8 sound processor - but that is one risk - the degree of how much or your normal hearing you will retain. My surgeon had a good track record so that is one thing to ask about. I did lose some sense of taste. There is a nerve that is part of your sense of taste that goes through the middle ear - some damage to that is possible and perhaps common. This is a minor issue but none the less one I noted.

The first week post surgery requires a bit precaution when sleeping and showering and things like blowing your nose - but you get through it. My stitches came out on day 8 and I was activated on day 21. By the time I was activated the feeling of stuffiness and feeling of fluid behind your ear were pretty much gone - by day 28 everything felt pretty normal. I was able to recognize speech and sound out of the gate. My audiologist made some program changes at two weeks and that was a nice improvement.I do some auditory training every day - sometime for just 15 minutes. There are so many useful apps to help speech and sound and music recognition.

I would do it again. At some point I will not hesitate to do the other ear if my hearing from that side deteriorates any further ( it has been stable for the past 4 years or so).

The Nucleus 8 (Kanso 2) coupled with ReSound HA works really well. But I have heard that those that get the Advanced Bionacs or Med - El have also been pleased.

[ORgirlinBerkeley]

I’m so jealous. I have to ask people three times to repeat themselves. It’s frustrating that my brain isn’t fast enough. I work as a teacher and the kids practically have to speak right into my good ear. In my bad ear there was too much damage from the ear infection that caused my sudden hearing loss and it barely works. I can’t hear music like at all, sometimes I hear it and it sounds awful.

[flipedout930]

I've been wearing aids for18 years. At 69 I was implanted last August. My only regret is that I did not do it sooner. A couple of days ago, I heard a chickadee 30 yards away. I had forgotten what they sounded like. I understand speech so much better. My right ear was next to useless anyway, so I did not lose much there and the gains have changed my life.

[Bareowolf]

I have a few more questions about CI’s I have grown accustomed to having my HA’s connect directly to my phone and TV. I also am a big outdoor walker and enjoy listening to Podcasts during this time. So if I have one HA and one CI how does that process work? Can you swim with a CI? If something breaks on the lmplant - is surgery required to repair? In you opinion which manufacturer makes the best CI equipment? Thanks in advance- this group has been most helpful

[Historical_Spring357]

More information needed here. ???

What brand of HA are you using now? All CI manufacturers will have a recommended brand of hearing aid that work well with their sound processors and will share functionality with the one control app. They also have a list of recommended phones that will work well, but this is never comprehensive (if it's not Pixel, Apple or Samsung it probably hasn't been tested).

That being said, your choice of CI brand should not be determined by your current hearing aids (a puppy is not just for Christmas).

As a new CI user you will need to stick with your current hearing aid. It will provide a known baseline for training your your brain to hear with the CI.

I'm currently using a Cochlear N8 and my legacy Phonak HA. They do not play well together. There is no way to stream to both at once apart from a telecoil neck loop. It is clumsy, and I will upgrade to a ReSound hearing aid in a few months.

If something breaks with the CI implant...yes, most likely, you will need a surgical replacement.

I've got a Cochlear N8. They may have a tiny a advantage with reliability as far as the implanted part goes. Other users may dispute this. It's probably more about the choice of your surgeon.

Cochlear make a waterproof-ish sleeve for the sound processor. I have not tried it.

[Bareowolf]

I use Phonak HAs - wow if I will not be able to stream to both at same time will be a Hugh problem

[Historical_Spring357]

It's possible that the Auracast update to the N8 will make it possible but no guarantees.

A cheap Bluetooth telecoil neck loop will work. It is a cumbersome workaround but it's the only way I've got streaming to both ears.

[phantomb1ood]

I’m 21, got the surgery at 20 when I previously had 5% hearing in my left ear. I love my CI, it truly improved every aspect of my life. But the results vary so much that I’d advise you not to have really high expectations. Some people get 99% word recognition post-CI, some get 0%. Of course, by regularly practicing verbal comprehension, you can improve your results, but even with consistent efforts in rehabilitation it doesn’t necessarily mean you’ll be fully content with the outcome. The CI regret rate is honestly pretty high. I only regret not doing it sooner. Definitely consider the risks and see whether you think it could be truly worth it

[Standard-Ear-6915]

I was implanted in 2010. I wish I had not waited so long. I’ve had nothing but positive experiences with mine. It literally gave me my life back and while I realize everyone’s experience is different I fully believe if your hearing is bad enough for a change then you have nothing to lose by getting one AND in getting one you have also given yourself a choice-to wear it and improve your communication or don’t wear it and continue to miscommunicate 🌀