JosephG Posted June 12, 2020 Report Share Posted June 12, 2020 General question for anyone here who has gone CI bilateral. I already have a CI on my left ear, but now my right (dominant) ear has degraded to the point where it still benefits somewhat from a high powered hearing aid (see attached audiometric test over time), but I can't really hear much of anything if it's unaided anymore and I AM a candidate for a CI. So what I'm wondering is for folks who have gone bilateral, when did you make your decision relative to your pure tone audiometry etc.? In other words, I'm trying to figure out whether getting another CI is the better choice for me with my present situation or whether I should invest in another high powered (albeit a bit expensive) hearing aid. My hearing in that right ear has been getting progressively worse over time, so I am anticipating needing a CI at some point regardless, but I'm just wondering when people who have experienced something similar believe the tradeoff in losing the natural hearing to get the CI is worth it. Thanks! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 12, 2020 HearPeers Heroes Report Share Posted June 12, 2020 @JosephG Getting a second CI was the best decision ever for me. I am so happy to have balanced bilateral hearing. If you are willing to take another CI journey, I highly recommend it. Quote Link to comment Share on other sites More sharing options...
JosephG Posted June 12, 2020 Author Report Share Posted June 12, 2020 Thank you @Mary Beth ! I'm certainly willing to get another CI, I'm just trying to make sure I'm not making a rash decision when potentially giving up the hearing that is still there on my right (however slight). My right ear has been my dominant ear for my entire life, so not necessarily knowing how it will perform with a CI (relative to an HA) is my only concern. But as you can see from my audiometric chart, I'm not giving up a tremendous amount at this point to make the jump, but still relative to where my left ear was at the time, there's a bit more on the right side. So I guess what I'm really trying to get at is whether folks, on average, think they perform better being bilateral CI vs unilateral w/HA (and in what ways) given a certain degree of hearing loss? Quote Link to comment Share on other sites More sharing options...
karenRS Posted June 12, 2020 Report Share Posted June 12, 2020 I'm in exactly the same situation. Get some benefit from a hearing aid in my unimplanted ear but not much benefit and can only hear traffic noise and my dogs barking a hearing aid. Am seeing the doc next month about getting this ear done. What decided me was the thought that if anything happened to my implanted ear, I would be unable to function. I can't hear with just my hearing aid in and no implant. I can't compare audiometry though, just practicalities. And surely hearing will be balanced with two implants. Mary Beth and JosephG 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 12, 2020 HearPeers Heroes Report Share Posted June 12, 2020 @JosephG Possibly it may help you decide if instead of looking at the audiogram, you look at your speech scores while wearing a high powered hearing aid. My first side had been unable to detect any sound at any volume for 24 years before being implanted. I was not risking any additional loss of hearing when we implanted my right side. It turned out to be an amazing CI listening ear! My left side had some hearing and was using a high powered hearing aid. When we implanted my left side, I did lose the remaining hearing in that ear. But I gained an excellent CI listening ear. I am way ahead with two CIs compared to one CI and one high powered hearing aid. Everyone’s experience is unique. For me, best decision ever! JosephG 1 Quote Link to comment Share on other sites More sharing options...
JosephG Posted June 12, 2020 Author Report Share Posted June 12, 2020 Thanks @karenRS and @Mary Beth So as background, I hadn't heard anything out of my left ear for practically my entire life (or as long as I can remember, so easily over 30yrs at least), so when I implanted that ear (Aug 2019) I didn't have anything to lose. Now with the CI I can hear 'noise' very well out of that ear and with context (visuals, lipreading, etc) I can function with that ear alone (though these N95 masks have been a real detriment). That said, my speech discrimination is still very poor on that left side, close to 0% word recognition ... I can hear the words but I can't understand/comprehend with just the sound alone (this might have to do with the pathways in my brain still being relatively rough from not using that ear for +3-4 decades; as I can listen to Audible books with this left ear alone and 'hear' the words w/the book, but when I remove the text it's much more difficult to follow, though I can find my place eventually from just listening). Now on my right ear, with a high powered HA (the high functioning ear I've used my entire life before it degraded), my CNC word comprehension is about 50-60%, sentences can be higher 75-85% (at 50 dBHL). So there's something there, but the question becomes can I do better (or hope to do better) with a CI instead? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 12, 2020 HearPeers Heroes Report Share Posted June 12, 2020 @JosephG I understand your dilemma much better now. I was not in your situation. My first side (which had not processed any sound for 24 years before being implanted BUT had heard prior to that) responded very well to aural rehab after being activated. I worked on aural rehab 2-3 hours every day (spread out over the day). It was hearing very well when I implanted my second side. In a way your dilemma is similar to people who can only get 1 side implanted and the surgeon wants to implant their better ear. Kind of like the difficult decision @Jewel shared with us. JosephG 1 Quote Link to comment Share on other sites More sharing options...
karenRS Posted June 12, 2020 Report Share Posted June 12, 2020 That's a difficult one. I had my left ear implanted. Speech recognition was only 12%. With the implant, it's 93%. My right ear which has the hearing aid is only 32% That test was over a year ago and I feel it is worse than that now. So I have really nothing to lose by getting the right ear done. It sounds like you have fairly good speech recognition with your hearing aid. Mary Beth and JosephG 2 Quote Link to comment Share on other sites More sharing options...
Dave in Pittsburgh Posted June 13, 2020 Report Share Posted June 13, 2020 @JosephGI am bilateral my first implant was 2016 and second implant 2018 best decision I’ve ever made you will hear sounds that you haven’t hear before how exciteding Best of Luck Mary Beth and JosephG 2 Quote Link to comment Share on other sites More sharing options...
JosephG Posted June 13, 2020 Author Report Share Posted June 13, 2020 Thanks @Dave in Pittsburgh! Glad to hear you had such a fantastic outcome. If you don’t mind me asking, how was your hearing/speech recognition just prior to going bilateral? Was it in anyway similar to mine (above)? I think my pure tone in the right ear is getting quite low, but my word recognition w/a high powered HA (that I’d have to purchase) is around 50-60%, with sentence comprehension a bit higher 75-85% (at 50dBH). The latter is probably more neuro related rather than just sound/hearing (i.e. brain strings it together). Quote Link to comment Share on other sites More sharing options...
Dave in Pittsburgh Posted June 13, 2020 Report Share Posted June 13, 2020 Actually I was at near or a tab below I no longer have my audio grams. I have a saying I am___years old and I want to live till I am 95(in good health) I want to hear what is going on. JosephG 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jewel Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 Hi @JosephG Each person has to make the decision that's right for him. My dominant ear was implanted and I have no regrets. I did lose most of my residual hearing and I now hear better from the unaided ear than the implanted ear when I'm not wearing the audio processor. What I have lost pales in comparison with what I have gained with the CI. The most powerful HA couldn't improve my word recognition score. It was 0-1% with the HA. The amount of money I wasted on powerful HAs over the years would have been better spent on my CI. If you're satisfied with what you are getting from your HA then go right ahead but honestly it doesn't sound like you're getting much from it. So you can tell what I would do 🙂. Mary Beth and JosephG 2 Quote Link to comment Share on other sites More sharing options...
JosephG Posted June 13, 2020 Author Report Share Posted June 13, 2020 Thank you @Jewel! The high powered HA that I was tested with is not even my own, I’d still have to purchase that one (+3k) which is why I’m debating whether it’s even worth it given how my pure tone audiometry has been degrading over time. And as you mentioned, whether that incremental cost would be better applied towards a CI. I do think I will eventually need a CI in that right ear (maybe <5yrs) regardless. My only hesitation is that my current speech comprehension is still about 70-85% (with that new, need-to-purchase HA), though my word comprehension is more like 50-60% aided (and my pure tone is 90db or higher across the board). So without an aid I can’t hear much of anything. That said, I just don’t have a good way of knowing whether the CI would result in higher scores, a more effective solution, though I suspect it might. So just trying to gauge the experience of folks who have gone thru such a process with their dominant ear. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 @JosephG So many of us, me included, end up buying new even more powerful hearing aids and then deciding to get a CI. It is great you are considering all of your options before purchasing new hearing aids. Have you already gone through the appts and testing to see if you qualify for a CI? Quote Link to comment Share on other sites More sharing options...
JosephG Posted June 13, 2020 Author Report Share Posted June 13, 2020 @Mary Beth Yes, I met with my audiologist last week and did all the requisite testing and I DO qualify as a CI candidate on the right side. I’m also meeting with my surgeon (NYEE Mt Sinai) on Tues morning to discuss possibilities. When I implanted my left ear, a hearing aid wasn’t even a question, I was basically deaf in that ear my entire life. My right ear though has always been my dominant (only) ear and I’ve been quite a high achiever on that ear alone. So the degradation impacts me greatly because while I can hear out of my left ear now, my speech comprehension is nowhere even close to my right ear (it’s been about 10mos since activation). The progressive loss in my right means a CI is very likely in my near future for that ear (unless some highly unlikely gene therapy solution comes to fruition), it’s just a matter of whether now is that time or whether I should again invest in another HA and prolong it for possibly another 1-5yrs or so (?). Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 @JosephG That is my CI center too! Which surgeon are you meeting with? Which CI audiologist? Small world. One day we may run into each other in the waiting room like @Jewel and @Jdashiell did! @Kylie did you also meet someone face to face? Quote Link to comment Share on other sites More sharing options...
JosephG Posted June 13, 2020 Author Report Share Posted June 13, 2020 @Mary Beth Small world indeed! Surgeon is Dr. George Wanna (he already did my left CI in July 2019) Audiologist is Lisa Goldin (Mt Sinai, 380 Second Ave location) Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 @JosephG Small world. Same location. (Exciting now that Ralph’s Italian Ice is right next store!) Dr George Wanna is my CI doctor now too. He did not perform my surgeries as my surgeries happened before he joined NYEE. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 @JosephG How did your appt go with everyone wearing masks? Any different routines in place now due to COVID? Quote Link to comment Share on other sites More sharing options...
JosephG Posted June 13, 2020 Author Report Share Posted June 13, 2020 @Mary Beth There's certainly a different routine. At the NYEE audiologist center they are checking everyone's temperature before they walk into the waiting area (where no one is waiting), they are asking the usual symptomatic questions, followed by a Purell squirt and then they are giving anyone who comes in a new surgical mask to wear (they don't want you wearing anything from outside). I have to admit, the masks have made it quite difficult to communicate for someone with a disability like mine. Some nurses/doctors are being a bit more accomodating (risk taking) and will actually remove their masks as long as the patient continues to wear theirs and is not showing any obvious COVID-like symptoms, but most are not doing so. There has been more usage of apps like Otter to do speech-to-text translation though, and that can help in certain instances. Personally I encountered this app at my recent NYEE audiologist visit. Fortunately though, once she put the demo hearing aid on my right side I had no difficulty at all understanding her through the mask. But with my left CI alone I can't really understand anyone without visual cues. Someone with greater speech comprehension in their CI's might not have a problem though (I'm not sure I ever developed/heard language on my left side prior to the CI). Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 @JosephG good to know. Thanks Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 @JosephG If you have an Android phone, download the free speech to text app called LiveTranscribe. If you have an iPhone, download otter.ai (free for the first 10 hours every month, no subscription required). JosephG 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jewel Posted June 13, 2020 HearPeers Heroes Report Share Posted June 13, 2020 @JosephG For my dominant ear I went from word recognition score of 0-1% (with HA) to 79-85% (depending on processor). JosephG 1 Quote Link to comment Share on other sites More sharing options...
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