implant choice and surgery

[Michelle]

Hi, I was just informed that I am a candidate for a cochlear implant in my left ear. I had a sudden hearing loss last year that has progressed on the left. I have asymmetric hearing loss. My right ear is not normal either, but  I can hear most speech with my right ear. I have been researching the different manufactures for implants and am going between cochlear and med-el.  I am wondering if anyone would  speak to why they chose med-el. Also, I am very nervous about the surgery itself. I have tinnitus and when the hearing loss first started it was at times debilitating in volume. The tinnitus is now 24/7 but at a level that I can function with. My concern is will the surgery set that off again? Is tinnitus suppressed when the processor is on? If anyone has experience with these issues, I would appreciate your input. Thank you

[Mary Beth]

@sherls

hello and welcome to HearPeers!

I chose Med-El for their electrode array options as the internal components are very long lasting and are what primarily determines the quality of sound.

I have had tinnitus since my progressive hearing loss began at age 13.  When I lost total hearing in my right ear following a surgery for Ménière’s disease, that tinnitus became very loud and constant.  After 24 years of my right ear being totally deaf, we implanted it.  The tinnitus is sooo much better.  When my processors are on, I do not notice any tinnitus at all.  When I remove the processors at night, tinnitus returns but at a significantly quieter volume than before.

@Jared Charney has shared about his experience with tinnitus before and after getting a CI.

 

Wishing you the very best!

[Michelle]

Thank you for your reply.

I am happy your tinnitus is better! I hope I have a similar outcome.

 

 

 

 

 

 

 

 

[Jason77]

I have some hearing in my non implanted ear as well and that was my preferred hearing ear for years. My implant is now my preferred ear. Beats the pants off the one with a hearing aid.

I chose MedEl for the long electrode. So glad I did. I really have some hard hitting booming base in my implanted ear. Makes me smile every time I hear it. I had tinnitus in my ear for 8 years prior to being implanted. It was slightly worse for the month until I was activated. For the first couple of weeks in went away when I had the implant on but I would wake in the middle of the night to what sounded like electronic jibberish. That quit after a week or so. Will have to listen when I take the processor off tonight but I don’t think I have any tinnitus at all now.

Everyone’s story and journey is different. I don’t regret one moment other than not doing it sooner.

[Michelle]

Thank you for your input Jason, I am leaning towards med-el and just hoping my insurance covers it and I have good outcome.

[AnnetteT]

Hi @sherls,  Welcome to Hearpeers!

On 3/12/2022 at 2:09 PM, sherls said:

Hi, I was just informed that I am a candidate for a cochlear implant in my left ear. I had a sudden hearing loss last year that has progressed on the left. I have asymmetric hearing loss. My right ear is not normal either, but  I can hear most speech with my right ear. I have been researching the different manufactures for implants and am going between cochlear and med-el.  I am wondering if anyone would  speak to why they chose med-el. Also, I am very nervous about the surgery itself. I have tinnitus and when the hearing loss first started it was at times debilitating in volume. The tinnitus is now 24/7 but at a level that I can function with. My concern is will the surgery set that off again? Is tinnitus suppressed when the processor is on? If anyone has experience with these issues, I would appreciate your input. Thank you

I was in a similar situation a couple of years ago with rapidly progressing (though not sudden) hearing loss in one ear while I had adequate hearing in my other ear. I regret now that I waited for my second ear to completely drop before getting my first CI as I've read some of the success stories of people who get the CI while one ear is good. That being said, I've been really happy with the quality of sound that I am experiencing with one CI and will be meeting with my surgeon next month to schedule the second surgery. I was really nervous about the surgery too, but was so surprised at how easy it was. I only took pain medicine for one day. The only downside is that I had vertigo for a couple of weeks, which has since completely resolved (I didn't have any hearing-loss-related vertigo). I was a bit less nervous because I had a lot of confidence in my surgeon,  as he is very experienced (CI surgery is his most frequent surgery) and he's a respected researcher.

I had strong tinnitus in both ears (I think) prior to my CI surgery (mostly of the "air conditioning" variety, but also high pitches and twingey feelings). All of this now disappears every morning when I put on my CI. Oddly, I don't even notice the tinnitus in my non-implanted ear during the day (making me wonder if maybe that ear only seemed to have tinnitus due to how loud the other one was). After a night of sleep without my CI, I do revert back to my new "normal" levels of tinnitus every morning, which is actually a bit better than my pre-surgery normal. One thing to note: I did have a strong wave of tinnitus for a few days after the surgery where it got quite a bit worse, but that went back down to my normal levels over a few days/weeks as I healed (perhaps due to temporary inflammation related to the surgery?).  One form of tinnitus (the twingey feelings) almost never recurs (from being an every day thing).

I think that Med-EL's biggest differentiator is in the area of music appreciation and internal components. I think that Cochlear's biggest differentiator is usability and external components. All of the brands offer really good products, but each has a different focus for research and development.

As a musician, I chose Med-EL because internal components need to last a lifetime so I want the longer electrodes to fully appreciate deep base tones and don't want to worry about backwards compatibility as I'm relatively young (early/mid 40s).

I also appreciate the focus on music appreciation in both private Med-EL studies and external academic studies (I was even able to meet with their musicologist/researcher who has offered to provide music rehab tips after I have acclimated for a month or so and I'm participating in a UCSF study for image-based custom mapping/programming to improve music appreciation that is only open to Med-EL recipients). Med-El emphasizes MRI-safety/compatibility, electrode features for different anatomies and increased safety during surgery, backwards compatibility, and really innovative research on less-traumatic robot-powered surgery). I think that other brands all do a good job and even do a better job with usability (more convenient streaming, more convenient swimming covers, etc.), but I'm OK with taking time to adjust to my external tech as my priority is for more "real" and natural sound quality. I was already enjoying music just a couple of weeks after my activation. It isn't perfect and some types of music sound better than others, but the fact that I'm enjoying it at all after losing 100% of my hearing is the big thing for me--even songs with the deep bass voice of Leonard Cohen sound good  to me (though the backup singers sound off to me for now, so early in my CI journey). 

Please feel free to ask if you have more questions about my experience. ☺️

[Michelle]

H Annette,

Thank you for all the information! I think I should have described my hearing loss a bit differently. I had a viral infection at age 49..hearing loss in both ears, mild tinnitus in the left, but very functional for conversation. I am now age 58 and last year hearing in my left ear took a sudden nose dive with increasing tinnitus. I am at a point where my 3/4 working right ear isn't enough. I am only really OK one on one, even then I miss things.  I am working, so that is not my day to day reality. I am pleased to know your tinnitus is suppress when the device is on! This gives me hope for that. I am concerned about vertigo too. I don't have it with the hearing loss, but I am sensitive to movement, sometimes briefly dizzy so I would guess I will be hit with it post op. I have just started this process so I am guessing I am looking at the fall for implantation if my insurance will cover it. I have a few of questions. Is there medication they give to help with the vertigo or do you just have to power though it? Are you a working musician? If so then your answer may be different. I am wondering how much time people take off from work for the procedure. Some posts have been saying 1 week which would be great, but I am concerned about tinnitus and vertigo, so I'm not sure if 2 weeks would be enough for that to resolve. Also, you said you were able to enjoy some music a couple weeks after activation, how long after the procedure were you activated, and how long was it until you could understand some speech?  At this point I have been reading and reading about different devices, and I think I am going with med-el. I agree with your point about how the external components can catch up. 

[Mary Beth]

@sherls

I was working as a Teacher of the Deaf when I was implanted each time. I took off a week.  My recoveries were very easy.  No dizziness at all.  I only took Tylenol for a couple of days.

Everyone’s recoveries are unique so there is no way to know ahead of time.

Wishing you the very best!

[Andrew42]

@sherlsJust to give you another perspective. I was implanted in a hospital where I stayed two nights, one prior to the surgery and one after. I took almost no pain medication at all as I had almost no pain, just a slight discomfort behind the ear where the incision was made. I suffered from slight vertigo issues for about a week and for that reason did not drive a car: (My decision, not that of the doctors). Also for about a week I could not lie at night on the side of the implant. I also found it beneficial to raise my head a little during the night. I am lucky enough to have an electric bed but a pillow or bolster under the mattress would have worked just as well. I am retired but would have had no problem going back to work at least part time after about three days and full time after a week. I lost all residual hearing in the implanted ear. Post activation I immediately had good recognition of sounds, clicks, bangs, scrapes etc. My understanding of words was slight. Music is another issue for me. I lost all ability to hear music some years ago. With the implant it has not come back although now, 120 days after activation, I think it is improving. I have no problem with beat, my issue is 100% with pitch. Finally, Tinnitus. It is better. Immediately after implantation it was actually worse and different. That was a stage that passesd very quickly. After activation my tinnitus has not totally disappeared but is much better both when the processor is on but also when it is off.

My choice of Med-El was deliberate after meeting with representatives from both Cochlear and Med-El and based on their arrays. Going in I knew that Med-Els accessories for streaming were almost certainly not as good as Cochlear's. If this is important for you be warned that, in my experience,  Med-El's streaming accessories are a generation at least behind the times. From correspondence I have had with Med-El Austria directly I have a hunch that they are aware of this but I have no clue as to the time scale for any changes nor of the priroirty they put on this aspect.

I hope this helps.

[Michelle]

Thank you for your replies Mary Beth and Andrew, I am hoping things go well. I really appreciate this forum. It certainly seems that everyone had a slightly different outcome, but so far those that have replied to me seem happy they have had the implant. Andrew, if you have a moment could you let me know what speech was like for you in the beginning and what is is like now 120 days after activation? Thank you

[AnnetteT]

On 3/19/2022 at 6:30 AM, sherls said:

Thank you for all the information! I think I should have described my hearing loss a bit differently. I had a viral infection at age 49..hearing loss in both ears, mild tinnitus in the left, but very functional for conversation. I am now age 58 and last year hearing in my left ear took a sudden nose dive with increasing tinnitus. I am at a point where my 3/4 working right ear isn't enough. I am only really OK one on one, even then I miss things.  I am working, so that is not my day to day reality. I am pleased to know your tinnitus is suppress when the device is on! This gives me hope for that. I am concerned about vertigo too. I don't have it with the hearing loss, but I am sensitive to movement, sometimes briefly dizzy so I would guess I will be hit with it post op. I have just started this process so I am guessing I am looking at the fall for implantation if my insurance will cover it. I have a few of questions. Is there medication they give to help with the vertigo or do you just have to power though it? Are you a working musician? If so then your answer may be different. I am wondering how much time people take off from work for the procedure. Some posts have been saying 1 week which would be great, but I am concerned about tinnitus and vertigo, so I'm not sure if 2 weeks would be enough for that to resolve. Also, you said you were able to enjoy some music a couple weeks after activation, how long after the procedure were you activated, and how long was it until you could understand some speech?  At this point I have been reading and reading about different devices, and I think I am going with med-el. I agree with your point about how the external components can catch up. 

Hi @sherls,

While we have different causes of hearing loss, it appears that the pattern was functionally similar (though I lost my hearing over 5 years, I did have a long period where I had just enough hearing in my single semi-working ear to understand simple 1:1 conversations). I was really lucky that my company converted to work from home right when I was losing that last bit of functional hearing as then I could perform my job over Zoom with captions (which I realize is a luxury and am grateful). 

My doctor did give me some medication for vertigo and another for nausea, but I didn't take either. I didn't have any nausea (which my doctor said some people get after anesthesia unrelated to the CI). Maybe I would have recovered from the vertigo earlier if I had taken the medication, but to be honest, I actually forgot that I had the anti-vertigo mediation until after I was completely recovered and found it while cleaning.

I am not a professional musician, but have played instruments and sung since I was a child and had a college minor in music (performing in my college's choir and chamber chorale and taking solo piano and voice training throughout college). I'm acutely aware that my CI hearing is not exactly to pitch, but it keeps improving and is so much better now than it was. I was activated 17 days after my surgery (delayed a bit in order to accommodate getting a flat panel CT scan and for the research study team to calculate the custom programming). I don't remember when the tinnitus resolved, but the whooshing tinnitus that started right after surgery (similar to what @Andrew42described) got better after a week or so. I'm lucky not to notice tinnitus (I can detect just a bit on the non-implanted ear if I concentrate on it)when wearing the device, but do notice that the levels are reduced even when the device is not off (worst when waking up in the morning). 

Answering your question about when I started to understand speech, I had hoped against hope that I'd be one of those people who understood speech when we turned on the device. That wasn't to be. All voices sounded like a vacuum cleaner. However, during my 90 minute drive home (which should have been an hour, but traffic...), I listened to a song on repeat in the car (Sound of Silence cover by Disturbed, which is bass heavy compared to the original but contains a wide range of pitches). It continued to sound like I was listening to a vacuum cleaner for the whole time, but I'm wondering if it didn't wake up my brain or something as I started to understand very simple speech within an hour of that (with voices sounding like Arnold in The Terminator lol). Just yesterday (a month later) I was listening to an audiobook via streaming (with my audiolink plugged into my iPhone and wirelessly connected to my Rondo) in a silent room. I was really excited that I only had to reference the Kindle words maybe once every few minutes instead of reading along and the voice was sounding more like how I remembered (I picked a series of audiobooks where the actress's voice was familiar to me). In less optimal sound conditions I do still need captions, but I'm trying to not look at them except as much as possible. I also expose my CI hearing to complex music that sounds awful (e.g. Beethoven's 7th symphony) and it's gradually starting to sound musical. I have also been doing ear training with my electric piano and the Meludia program (both the iPhone/iPad app and the computer version, which is more challenging). Music distortion is definitely getting better. Mid tones are best for me (vocals) with low and high notes needing some work (low better than high).  It's still not great, but after 2 years of not having any music, it's wonderful. My goto apps for speech practice have been WordSuccess (iPhone/iPad version) and Angelsounds (PC version). I also try to run youtube music in the background while listening to speech to simulate being in a noisy environment. 

 

 

[Andrew42]

@sherlsI was activated about six weeks after implant. During that session some tests were run. Some were just ordinary noises, clicks, bangs scratches etc. These I had no difficulty with. I was then put in a sound booth and words were said to me in english but in either an American or a Swiss German accent. I got less than 50% and felt a bit down but was assured I did quite well. At home I was a bit bloody minded and refused to put my hearing aid in my other ear. My understanding of one on one conversations at close distance and facing was really quite good. Listening to two people chatting away and not facing me: forget it. Within ten days my wife was back to her old game of telling me I was only understanding what I wanted  to hear. I will not say that she was entirely wrong but she was less right than she thought. I watch a lot of TV with subtitles in French and English and now at 120 days from activation my understanding is light years ahead of where it was: but still not brilliant. I use Angel as a training guide but I do not use it enough: my bad. Music is stll a problem but I get moments when I think it is getting slightly better. We are all on a journey and our paths are necessarily different. Over here there is no post implant help for people of my age Children and working people get assistance. We old fogies are reckoned to be past help!! Finally I use Audiolink. Initially I could not take phone calls direct to my implant it was better on the speakerphone. Now I can take and make calls using my Rondo.

I do hope all this helps. Ask specific questions if you like. Good luck.

[AnnetteT]

On 3/20/2022 at 4:40 PM, Andrew42 said:

Over here there is no post implant help for people of my age Children and working people get assistance.

That's unfortunate. Also unfortunately, over here (the US), I believe that only children (with maybe a few exceptions) tend to get rehab assistance beyond getting a list of apps.  I have found this forum extremely helpful in bridging that gap!

[Rubella]

All, this is so helpful to hear your stories.  I was evaluated and am borderline and it will be up to me whether to pursue or not.  Hearing only gets worse with time, so maybe sooner than later is the way to go.  I'm worried about functioning well at work while things ramp up.  I don't have a sense of if I will be going backwards for a while before moving forward, and if so, for about how long would I be at a deficite?  

I realize this is a Med El forum.  In my research, I am aware of the longer array claims of advantage and it seems to make sense.  How does one know it is not more of a marketing angle to differentiate the product.  My background is marketing...so I am always on the lookout based on what I hear in the meetings I have attended over the years.  I worked at a research university as well and know that funding availability can create research projects, so having a major university choose to do a study doesn't necessarily mean it is because of advantage.  Call me a skeptic, or call me a wary consumer.  If it was a proven advantage, why haven't competitors followed suit.  

I don't mean to be contrary at all, just working through the thinking process and trying to be objective. I appreciate any insights.  My other company choice is Advanced Bionics.

[Mary Beth]

@Rubella

it is extremely difficult to find completely objective information comparing the 4 FDA approved CI brands.  If not impossible to find.

 

I can only share my personal experience.  I have two different electrode array lengths as my right ear had to use a stiffer electrode due to ossification and blockages.  Both ears hear well.  But the left ear with the longer electrode array has a much improved quality to deep bass tones- especially noticeable in music and deep male voices.

 

Wishing you the best on your journey.

[AnnetteT]

On 3/23/2022 at 6:44 PM, Rubella said:

All, this is so helpful to hear your stories.  I was evaluated and am borderline and it will be up to me whether to pursue or not.  Hearing only gets worse with time, so maybe sooner than later is the way to go.  I'm worried about functioning well at work while things ramp up.  I don't have a sense of if I will be going backwards for a while before moving forward, and if so, for about how long would I be at a deficite?  

I realize this is a Med El forum.  In my research, I am aware of the longer array claims of advantage and it seems to make sense.  How does one know it is not more of a marketing angle to differentiate the product.  My background is marketing...so I am always on the lookout based on what I hear in the meetings I have attended over the years.  I worked at a research university as well and know that funding availability can create research projects, so having a major university choose to do a study doesn't necessarily mean it is because of advantage.  Call me a skeptic, or call me a wary consumer.  If it was a proven advantage, why haven't competitors followed suit.  

I don't mean to be contrary at all, just working through the thinking process and trying to be objective. I appreciate any insights.  My other company choice is Advanced Bionics.

Hi @Rubella, 

I think that your decisions is so much harder to make than mine was because I didn't have any residual hearing to save by the time that I finally scheduled my surgery (my decision was delayed both by the pandemic and last-ditch attempts to save my hearing with medications). Because of this, I didn't have to consider hearing aid compatibility or residual hearing loss. These are very important factors that I can't speak to at all. 

I agree with you about and also distrust marketing materials. I didn't really spend much time with any of the companies' marketing materials. I spent more time reading academic research papers (mostly peer-reviewed academic papers). I also found that the https://www.medel.pro/ site seemed less marketing-heavy and actually cited research rather than simply making unsupported assertions. (This article [EDIT: fixed incorrect ilnk] cites 18 research papers to support their claims while this article cites 51 research papers). That being said, I still trusted the published studies that I found on my own more than the "pro" site (as any manufacturer will have selection bias toward papers that agree with their claims in cases where research results are mixed. For example, there is a 2015 study that shows that long electrodes have a higher likelihood than shorter for not being fully inserted (18-32% in the study of ~35 people) and there is some concern that longer electrodes may be associated with reduced residual hearing. But then, I read another more recent study (2019) that said the that there was no significant difference and that the deciding factor for residual hearing loss is traumatic vs atraumatic insertion. Based on these two studies, I was very happy to be working with a surgeon who had a lot of experience with long electrodes and was more likely to have full insertion and atraumatic insertion. 

The factors that mattered the most to me were mostly related to music. My UCSF research team are only accepting Med-EL recipients in the CT-guided custom mapping for musical appreciation study that I have joined (single biggest factor).  I also  found more studies being done (and papers written on) using Med-EL to study and try to improve music appreciation and other non-speech-discernment (e.g. detecting emotion, etc.) than for the other two companies (I found a lot of great studies being done on speech discernment for all 3). Med-EL also has a dedicated musicologist who is a CI recipient and musician who took the time to meet with me and is providing me aural rehab tips to improve music appreciation ability. They also created software to enable researchers and clinicians to adopt Anatomy Based Fitting (which is similar to what the UCSF study is doing and should improve tonotopic placement/accurate pitch perception) and invite some users to spend a week at Med-EL's US HQ to participate in studies. I did find it interesting that AB is doing research to try to improve low frequency perception with shorter electrodes, but didn't find the research compelling enough to change my decision about using the longer electrodes. 

I'll admit that at first, I was strongly considering Cochlear company because of the ease of use since I was so mentally exhausted trying to live without being able to hear (hassle-free streaming, great swimming accessories, etc.). However, after reading posts in FB forums from all 3 brands, I was disappointed to read that more than one musician reported in these forums how they were disappointed with missing out on the bass tones that are out of reach with the shorter electrodes, saying that music sounded "tinny" (though they were very happy with how well they could understand speech ). Obviously, these are anecdotes from a forum, so not really scientific evidence--but they were not inconsistent with the science that I'd read. I also read about a couple of long-time users from other brands who were affected by a lack of backwards compatibility and were disappointed about not being able to upgrade their processor without having to have another surgery (which could result in trauma affecting sound quality). Med-EL advertises  that they currently support all electrodes for more than 20 years (24 if I recall correctly). This emphasis on backwards compatibility is important to me because I'm relatively young. 

While I can't compare the performance of both a long and short electrode, as I only have the long one (28mm flex), I do know that I had access to low tones on day 1 of activation. When voices started coming into focus for me a few hours after activation, they sounded like the deep bass sound of Arnold Schwarzenegger in The Terminator, not like the higher pitched Alvin and the Chipmunks that I've heard mentioned in multiple forums. As I mentioned in another post, I initially had issues with the sound of a very deep-voiced actor during my first week of CI activation, but over the last month, that actor's voice has gotten closer and closer to how I remember it with no more jumping to higher pitches. I since learned that my MCB levels show that both my high tones and my low tones are weaker, perhaps due to auditory nerve health since I lost my high and low frequencies years before I lost my final ability to hear speech (unlike many who have ski slope audiograms, I had an inverted U until I flatlined). I've been intentionally exercising my high (with opera) and low tones (with Leanord Cohen and others) for hours and hours, and am seeing improvement in both. I'm also starting to hear musicality in complex music like Beethoven's 7th symphony. 

All in all, I'm happy with my decision based on my rapid improvement in music perception in just over a month after activation and my improving ability to understand speech in an ear that has been deaf for almost two years (my other ear can't hear anything quieter than a garbage disposal). I also realize that I'm probably like almost all CI users with a confirmation bias for my brand for psychological, and not just objective, reasons . I've noticed that all happy CI users seem to be happy with their company.

I am wishing you the best no matter what you choose! This is such an individual decision that really depends on your individual situation and priorities. ❤️ 

Annette

[Rubella]

Annette - very helpful.  Thank you for some great links.  I will take some time to review.  

 

[AnnetteT]

2 hours ago, Rubella said:

Annette - very helpful.  Thank you for some great links.  I will take some time to review.  

 

 I just updated one of the links where I had failed in my attempt to copy and paste.