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JosephG

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About JosephG

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    Male

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    User of a hearing implant
  • Implanted
    Yes
  • Implant Period
    Under 1 year
  • Implant Type
    Cochlear Implant
  • Hearing Loss Type
    Sensorineural
  • Cause of Hearing Loss
    Unknown / Prefer not to say
  • Pre/post lingual Hearing Loss
    Post lingual Hearing Loss
  • Sudden/Progressive Hearing Loss
    Sudden Hearing Loss
  • Uni/bilateral Implant
    Unilateral implant
  • Country
    United States

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  1. @Julie72 First, I would like to say that you’re doing a fantastic job for your daughter! I wish that when I was at that age that my parents would have put in the same level of effort and care with my SSD. So with that said, here’s a little background on myself as I was in a very similar situation as your daughter. I was single-sided deaf (left ear) with normal hearing in my right ear (though even at that age, at the highest 6-8k Hz frequencies I was still at a mild loss in that right ‘normal’ ear; 100% speech discrimination though). That was about 40yrs ago, so given how poor my left ear was we just did nothing with it (CI’s weren’t as readily adopted then). I went thru my entire secondary education (not to mention college and the beginning decades of a professional career) on one ear alone, and to be honest, quite successfully at that. I bring this up NOT to talk about myself, but to hopefully let you know that you are not alone in this kind of situation and that simply by aiding her deaf ear (to any extent) that it’s likely going to do wonders given her other normal ear. She’s young and with another good ear her brain (and neural plasticity) is very likely to synthesize the sounds and information she hears quite well. And if it’s possible for someone like me to be successful with one ear alone, imagine the possibilities with a little help to make it binaural, even if it’s not absolutely perfect on that side. So keep up the good work and definitely continue monitoring her hearing diligently as she progresses, but at the same time try not to give yourself too hard of a time with the variance (that is bound to happen) and/or stress yourself out too much with some of the weaknesses on that side. And feel free to reach out to me if you have any other questions about my experience and I’ll try my best to lend a helping hand.
  2. @Mary Beth I’ve had a similar experience with my left CI, but as pertains to podcasts instead of audiobooks. Keep in mind, I really hadn’t heard anything out of my left ear for my entire life (but my right ear used to be completely normal) and when I got my CI 10mos ago I couldn’t understand a thing. Now I can listen to podcasts and though the comprehension still isn’t entirely there, but I can now certainly recognize the voices and the accents and know who is speaking, even I don’t understand every word of it all yet. Neil deGrasse Tyson (StarTalk) is very close to the same Neil I hear with my right ear, which is quite fascinating (and he is not alone in that respect)!
  3. I’ve certainly had trouble understanding anyone completely through a face mask using my left CI aided ear only (with a hearing aid on my right ear I can understand most with relative ease). But I wasn’t sure if that difficulty was a unique experience on my end since I only got my left CI activated 10mos ago and I hadn’t heard anything out of that ear for my entire life prior to that (give or take 4 decades). That said, some people with normal hearing have trouble understanding through cloth masks and the like, so I don’t think it’s entirely unique to our community, but it certainly makes understanding a lot more difficult for us in particular. In fact, I read somewhere (unfortunately I don’t recall the source exactly) that something like 20% or so of normal hearing comprehension is accomplished thru lip-reading /facial expressions, so it affects everyone likely to some extent. But if one can hear well through the masks then I think that says a lot about one’s CI aided experience. I never realized how much I relied on lip reading until faces were inaccessible (even a half covered smirk/lip can, surprisingly, make a huge difference IMO).
  4. @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.
  5. @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).
  6. @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)
  7. @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 (?).
  8. 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.
  9. 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).
  10. 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?
  11. 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?
  12. 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!
  13. Just to add my 2 cents, I've been single-sided deaf (left ear) for as long as I can remember, so easily +35yrs (I may have been able to hear in that ear when I was younger, but I'm not entirely certain and the problem was first diagnosed in early elementary school). I recently had CI surgery in August 2019 and was activated Sept 1st, so I've now been using a CI in my left ear for about 6 months. In the beginning things were very difficult to understand. I heard "sound", but conversation was largely like 'morse code' to me and I couldn't much distinguish a constant noise like running water from an array of other sounds. But ... things have gradually improved... I can now hold my own using only my left (CI) ear in conversation and particularly anywhere that I have even modest visual cues (lips, facial expressions, context of some sort). The phone is still quite difficult in that ear and I wouldn't attempt to take a phone call in that ear by itself, but I do try to listen to podcasts and the like exclusively in that ear and things are getting better. I've been streaming Audible books (with the accompanying text) to my CI and I can hear the reader/speakers very clearly and find my place even if I lose the text by just listening to the words. And in general voices (of all kinds) no longer sound robotic or mechanical, I clearly hear language, accents, stylistic differences etc (sometimes I even learn how a word is pronounced by listening to it in that ear .. yeah, crazy, right?). So while it's not perfect by a long shot and I still need a lot of work on that ear, I see vast potential on the cusp. So to try to keep a long story short, in my opinion everyone has a slightly different experience with these devices, but I'd like to believe that if I can make the progress that I've made in my left ear after such an extensive period of dormancy (perhaps since birth?), that anyone with any degree of hearing loss over any period of time can benefit tremendously with the proper mindset and effort applied. It will take work, don't get me wrong, and it's very likely you will not understand a thing in the beginning (personally I'm still uncertain if it will ever be anywhere as good as my right "good" ear in terms of comprehension), but the fact that I now sometimes prefer that side in conversation is frankly amazing to me. So best of luck @Campnorthstar72!
  14. @Hicksy Thanks for sharing your initial experience! It's good to be able to connect with people who come from somewhat similar starting points, though of course, everyone's path will be a little different. Regarding "wearing an earplug in your 'good' ear", that actually is something my audiologist strongly recommended and as such I have been trying to rely almost exclusively on my left (CI) ear, plugging my right ear to the extent I can and/or wearing noise-canceling headphones on my right ear alone. But to be frank, doing so has been extremely difficult because everything sounds like morse code or just plain horrible (though I've been sticking it out). So in your opinion, do you think it truly helps to improve the acclimation process? @Mary Beth Thank you for all of the extremely helpful aural rehab links/materials, greatly appreciated. Your video was also fantastic and might I say, encouraging. I actually ended up going with the Nucleus 7 sound processor with Kanso (I know, I know, it's not Med-El, which was the alternative that I was leaning towards, but with the recent MRI approval (3T) of the N7 coupled with the direct iPhone/iOS connectivity features and a few other things, I ended up being sold on the former ... though of course the right ear is still open to change ). Just broadly speaking though, everything just sounds so similar right now, lots of pure noise/hums/pitter-patter; and words, even knowing what they are (particularly with similar syllable counts) are very difficult to distinguish from one another, if at all. So in short, it's very easy to be discouraged and question whether the device is even working properly. So knowing that none of our journey's is identical, I still do find it quite helpful to see that we're not quite alone and that others were able to overcome the seemingly insurmountable obstacles that confront the new user. That there might just be light at the end of the distant tunnel ...
  15. Hi all- First a few things about myself ... I've been single-sided deaf (left side) at least since early elementary school (I was not born that way as far as I know, but the precise etiology and dating of the degradation is unknown), so that's roughly 30yrs of very poor hearing on that side. However, my right side has carried me all these years and I'm a very high functioning professional in NYC. However, I recently had a sudden degradation of my hearing on the right side as well (sudden sensorineural hearing loss), but fortunately after several direct intratympanic steroid injections (NY Eye & Ear Infirmary) that ear has recovered sufficiently and functions fine with just a Lyric hearing aid. But after losing my entire ability to hear for a few weeks, I decided I needed to do something more proactive about my weaker left ear to ward off any future difficulties that I might encounter with my dominant right ear going forward. This led me down the path of a cochlear implant which I had surgery for on July 30th and was just recently activated for this past Friday (Aug 30th -- all work done at NYEE). I've been browsing through the various threads here and there's a lot of helpful info, so thanks to all who have contributed. However, there are a few questions that are a bit more specific to my experience that I was hoping somebody could help me with. I know it's been only 3 days, but I do not feel like I'm "hearing" very well out of my left ear implant ... or more to the point, the sounds I do hear are just rocking my brain, for lack of better words. I can hear speech, mainly syllables and/or the separation of words, but very little-to-none of it makes any sense at all, it all sounds like morse code. And some sounds that I would expect to be loud, like the streets or say the subway, aren't really very loud or noticeable at all, while others, particularly music, just rattles my brain nonstop (music I'd have to say is the worst). Also, I am clearly hearing high pitched noises, like keys rattling, as it makes me want to cringe, but at the same time (and this is going to sound odd) I don't feel like I'm really "hearing it" per se, it has more of a blank feeling to it. In the same vein, another item I've noticed has to do with "state changes". For example, if the water is running I can tell as soon it's turned on or when it turns off, but while it's on I probably couldn't say "oh, the water is running" or "the A/C is running". Similarly I can tell the difference between speech and music or say a tool being used, simply by the rhythmic nature of the sound patterns, but it is still just similar sounding 'noise' almost beating into my head. The one thing that does give me optimism though is that if stream a book directly to my processor via Audible, and I follow along with the related physical text, I can "hear" the words/sentences magically begin to form out of the text, I hear the book being read and can follow it (I've done this for 100 pages of a bio). It's a lot of focus though and very easy to lose my place and without the text I'd have no idea what the reader was saying, so I'm not sure what to truly think about this. So I guess my main question is, is this normal, particularly for someone who hasn't heard out of one ear for an extended period of time? Has somebody else with single-sided or double-sided deafness for an extended period of time experienced anything similar upon initial implantation that they could relay? Apologies that this message got a bit long. Many thanks, Joseph
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