Diane Posted August 3, 2020 Report Share Posted August 3, 2020 Hello - I am new to this forum. I suffered sudden hearing loss from an ear infection while pregnant back in June 2019 at age 35. I had steroids, injections, tried hyperbaric...nothing improved the loss. I waited the recommended year to see if there would be any recovery, which there wasn’t and am not looking into an implant. I have terrible tinnitus, hyperacusis, profound loss in the high frequencies and normal low frequency hearing. A few questions i wanted to send out to this forum... Did anyone have a doctor tell them that an implant would not help due to normal hearing in the other ear? I had one say this as well as one say it would be beneficial. Is it strange to have electronic hearing in one ear when the other is normal? Is it noticeable for a long time - totally understand everyone’s experience is different, but I am quite nervous about this unknown. Will an implant improve my ability to be in noisy environments? This is completely intolerable at this point and definitely no way to live. Did anyone have bad sensitivity to loud sounds and then have it improve post implant? Thanks so much for any feedback on experiences. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 3, 2020 HearPeers Heroes Report Share Posted August 3, 2020 @Diane welcome to HearPeers. I am sorry about your sudden hearing loss. @Kylie is single sided deaf with a cochlear implant. Yesterday during our monthly virtual coffee chat she shared a great story. Maybe she will repeat it here. Wishing you the best! Kylie 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kylie Posted August 4, 2020 HearPeers Heroes Report Share Posted August 4, 2020 @Diane hello! These are very similar to questions I was pondering before my own surgery. I became deaf in one ear very suddenly at the age of 37. Also tinnitus. My other ear is excellent. I saw an audiologist and ENT who both told me that a CI would be the ideal solution. I have now had it for 1 year and it is fabulous! Having a hearing side is very helpful, and in a brief time the brain clearly adapted to the mixed inputs and sorted it into one coherent sound. Earlier in the process it did sound electronic overall but that fades with time and rehab practise. Single sided hearing also means that practise is done in a particular way (to isolate the CI side) but that is merely logistical and there are a few threads where that is discussed. There is no cause for a doctor to tell you that single sided deafness is not a good reason for CI, there is so much evidence to the contrary all around the world. The nuances of your individual hearing loss is important though. Make sure you are getting advice from specialists who work with single sided deafness (like audiologists, ENTs, rather than just general practitioners.) 1 year in - I have great functional hearing, I score normal on some hearing tests! I can hear pretty well in busy environments though I don't have your extra sensitivity so I can't speak to that. But it also dulls the tinnitus so that I forget it's there. Most days I completely forget I have any hearing impairment because the world sounds normal in 90% of scenarios. I mostly remember when I take it off at night! I am glad every day and have no regrets. There are quite a few pages here where people discuss single sided deafness so I recommend reading through them. Plus the whole internet! I read and read before I made my decision. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Diane Posted August 4, 2020 Author Report Share Posted August 4, 2020 @Kylie Thanks so much for sharing your experiences! The doctor that told me I wouldn’t like the implant didn’t seem to have much experience with single-sided deafness....the other surgeon and audiologist from Columbia definitely did, so I just wanted to throw that question out there on this forum. Which implant/processor do you have? I am reading through all the different information on the different types trying to figure out what would be best for me... its a bit overwhelming. Kylie 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kylie Posted August 4, 2020 HearPeers Heroes Report Share Posted August 4, 2020 I have the sonnet 1. Don't know about the inside bit. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 4, 2020 HearPeers Heroes Report Share Posted August 4, 2020 @Kylie chances are you have either the internal Synchrony or internal Synchrony 2. Med-El has been using Synchrony/Synchrony 2 in most regions for awhile. @Diane Are you in the NYC region? My CI center is in NYC. Quote Link to comment Share on other sites More sharing options...
Diane Posted August 4, 2020 Author Report Share Posted August 4, 2020 @Mary Beth Yes, I am in NYC region. I was evaluated at Columbia and met with a surgeon/audiologist there. What center do you use? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 4, 2020 HearPeers Heroes Report Share Posted August 4, 2020 @Diane I go to New York Eye & Ear Institute of Mount Sinai (NYEE). Love them! Quote Link to comment Share on other sites More sharing options...
Diane Posted August 6, 2020 Author Report Share Posted August 6, 2020 @Mary Beth Thanks for the info...i think I’ll reach out for a second/third/fourth (ugh) opinion. Who was your surgeon and audiologist there? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 6, 2020 HearPeers Heroes Report Share Posted August 6, 2020 @Diane I will send you a HearPeers mail message. In a few moments check the top near the envelope icon. Quote Link to comment Share on other sites More sharing options...
Lori m Posted August 11, 2020 Report Share Posted August 11, 2020 Diane, I am sorry for your hearing loss and all that follows. i also had sudden hearing loss, and like you I retained some hearing in lower frequencies. When I got CI, I did in fact lose that remaining hearing on the left. i still have my nagging tinnitus and the Hyperacusis, 5 months after activation. I wear my CI everyday, and I feel better with it than without it, but because of tinnitus I’m really never comfortable. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jewel Posted August 13, 2020 HearPeers Heroes Report Share Posted August 13, 2020 (edited) Hi @Diane I had recruitment for several years. I would go to work and other places and the central AC would sound extremely loud. When I got my CI, the recruitment disappeared. All the places I frequented before the CI were now so quiet now that I had the CI. I'm wondering whether the same thing could happen with hyperacusis. But given @Lori m experience, there are no guarantees that the hyperacusis will disappear. Hopefully others who had hyperacusis will chime in. I wish you well with your hearing journey. Keep us posted. Edited August 13, 2020 by Jewel Made an error Quote Link to comment Share on other sites More sharing options...
Diane Posted August 13, 2020 Author Report Share Posted August 13, 2020 @Jewel @Lori m Thank you both for sharing your experiences. Do you mind sharing what electrode type length and processors you use? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jewel Posted August 13, 2020 HearPeers Heroes Report Share Posted August 13, 2020 @Diane I have Synchrony Pin Flex 28 and use Sonnet and Rondo2 on the same ear. Quote Link to comment Share on other sites More sharing options...
Diane Posted August 13, 2020 Author Report Share Posted August 13, 2020 @Jewel do you notice a difference in sound quality between the sonnet and rondo2? Which do u prefer? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jewel Posted August 13, 2020 HearPeers Heroes Report Share Posted August 13, 2020 @Diane Yes there is a marked difference for me. I prefer Rondo2 and when I was tested with both, I scored higher with Rondo2. However, in very noisy environments I prefer Sonnet. The sound settings possible with Sonnet are different from Rondo2. Rondo2 only offers omnidirectional mic settings whereas Sonnet offers more mic options. However since Rondo3 has two mics and Rondo2 has two I'm expecting the sound from Rondo3 to be different from Rondo2. I also prefer Rondo2 now that we have to wear masks. Quote Link to comment Share on other sites More sharing options...
KennyW Posted November 19, 2020 Report Share Posted November 19, 2020 Hi all. I'm about to schedule my surgery for a CI for my left ear. Nervous, but not sure I see any downside. The commitment to therapy to make it all work seems like a lot, but I'm motivated - it would certainly be nice to hear again in my left ear! I think this is a Med-El site so I'm not sure if I'm allowed to say that I'm leaning toward the Advanced Bionics CI. Picking between vendors might be the hardest part of this. How did you guys go about it? Thanks. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 19, 2020 HearPeers Heroes Report Share Posted November 19, 2020 @KennyW Wishing you the very best on your journey! My right ear was implanted first. It had heard when I was younger but then spent 24 years not processing any sound following a surgery for Meniere’s. I used to call it my dead ear. Smile I chose Med-El for their electrode array options. The factor that impacts our hearing with CIs the most is the internal component of a cochlear implant. The external processors and accessories change very rapidly. Whichever brand you choose, I wish you the best. Here is a link to a video of my CI journey in case you are interested. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kylie Posted November 22, 2020 HearPeers Heroes Report Share Posted November 22, 2020 On 11/20/2020 at 2:55 AM, KennyW said: Hi all. I'm about to schedule my surgery for a CI for my left ear. Nervous, but not sure I see any downside. The commitment to therapy to make it all work seems like a lot, but I'm motivated - it would certainly be nice to hear again in my left ear! I think this is a Med-El site so I'm not sure if I'm allowed to say that I'm leaning toward the Advanced Bionics CI. Picking between vendors might be the hardest part of this. How did you guys go about it? Thanks. Kenny you can choose what suits you best! Do all the research you can. I myself did not have a choice, my clinic only implants medel. Which I am very happy with. Quote Link to comment Share on other sites More sharing options...
KennyW Posted November 22, 2020 Report Share Posted November 22, 2020 2 hours ago, Kylie said: Kenny you can choose what suits you best! Do all the research you can. I myself did not have a choice, my clinic only implants medel. Which I am very happy with. Thanks. I am going to speak to company reps this week and get more info. It seems like a “no-brainer” for me to get a CI since I’m dead in my left ear, but it is also obviously a big decision. Hard to believe I completely lost hearing in September and am scheduled for surgery in 3 weeks! Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 22, 2020 HearPeers Heroes Report Share Posted November 22, 2020 @KennyW You sure have been through a lot in a short time. Keep us posted on your CI journey. Wishing you the best. Quote Link to comment Share on other sites More sharing options...
MIKE js Posted November 29, 2020 Report Share Posted November 29, 2020 HELLO, SSD SINCE JANUARY 2020 IN LEFT EAR. MY ISSUE IS A UNILATERAL COCHLEAR IN NOT A MEDICALLY NECESSARY PROCEDURE FOR COMMERCIAL INSURANCE AND IS ALSO NOT COVERED BY MEDICARE WHICH I WILL BE ON IN 6 MONTHS. HAVE A BAHA ON THE LEFT SIDE BUT I WOULD REALLY LIKE TO GET MY HEARING BACK ON THE LEFT TO HELP WITH SOUND DIRECTION. DOES ANYONE HAVE ANY SUGGESTIONS? ANY CLINICAL TRIALS AVAILABLE OR A SURGEON WHO WILL DO THE PROCEDURE FOR SELF PAY( IN THE MEDICARE FEE RANGE)? MIKE FROM FLORIDA Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 29, 2020 HearPeers Heroes Report Share Posted November 29, 2020 @MIKE js here are some links to clinical trials https://clinicaltrials.gov/ct2/show/NCT04506853?term=Med-el&draw=3&rank=14 https://clinicaltrials.gov/ct2/show/NCT02203305?term=Med-el&draw=4&rank=22 It seems some single sided deaf children (age 5+) and adults are getting CIs approved in the US. It may depend on insurance or the CI center. Wishing you the best. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 29, 2020 HearPeers Heroes Report Share Posted November 29, 2020 https://www.audiologyonline.com/interviews/recent-fda-approval-of-cis-for-ssd-26040 Quote Link to comment Share on other sites More sharing options...
Gloria B. Posted November 30, 2020 Report Share Posted November 30, 2020 I have a question on SSD. My left ear is worse than my right ear, but I have hearing aids in both. I'm considering CI in my left ear, while continuing to use a hearing aid in my right ear. I've seen that Med-El has the Synchrony implant for SSD, but would that not be something I would consider if I use a hearing aid in my right ear? Do I have to have regular hearing without a hearing aid in my right ear to be considered for a Synchrony implant? Quote Link to comment Share on other sites More sharing options...
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