Isabel Posted December 30, 2021 Report Share Posted December 30, 2021 Hi guys Thank you for giving me the opportunity to be part of this community. I have some questions about my hearing situation. I have suffered from otosclerosis for 7 years. In my left ear this lead to a complete deafness (it seems the hearing nerve is also affected and a CI therefore not an option), as it was detected too late, I didn't undergo any surgery at the time. Now, it seems to be starting in the right ear as well. My hearing curve is between 20 and 40 dB in the right ear, while 2 years ago it was between 0 and 10. My doctor says, that might just be the variation which naturally occurs between different tests and he needs to do some more in order to know what's going on, but I am really worried about this and can actually feel that I am having more hearing problems in social situations. 3 things mainly: 1. What can I do to prevent complete deafness in the worst case scenario (as the operation isn't an option) 2. Which hearing aid would be the best one for me 3. How likely is it that I actually become deaf Regarding 1: My doctor also says, that it case it gets worse, he doesn't recommend an operation, as it bears risks and I shouldn't take them because I only "have one ear". Is this the usual recommendation? Are there any other options? Regarding 2: Currently, I am using a CROSS System. It has always been limited, however, it was better than nothing. But now, that I hear less on my right ear, it is getting more difficult. I had a PONTO bone anchored hearing aid before. The sound was good, but it was constantly infected and unpractical for outdoor activities and it would fall off sometimes and I would always be worried about loosing it. What my doctor is suggesting now is the following: I use a normal hearing aid in my right ear, which would be ok for me, but I am aware, this isn't a solution to the problem, as the hearing loss might still progress and then I need to find a new solution. And then he suggests to try a bone anchored hearing aid on my left ear again. As mentioned, I was happy with the sound, but found it very unpractical. I heard about this new ADHEAR hearing aid, which seems very interesting. Any experiences with this? Regarding the CI: It doesn't seem to be an option for my left ear, maybe in the future for the right one. I heard it takes a lot of training and a long time until you can understand everything again. Regarding 3: My doctor says that I have otosclerose and this might affect both of my ears. However, it only lead to deafness in my left ear in combination with an infection. But I read that otosclerose by itself can lead to deafness, so I am confused about this. Also, I don't understand why my ear was infected twice during the last year (when the hearing loss started), I still have this weird pressure on my ear, but my doctor doesn't see any connection there. Maybe someone here has experience with otosclerosis or some of these symptoms (I also have a strong tinnitus on both sides, no nausea) Thank you so much! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted December 30, 2021 HearPeers Heroes Report Share Posted December 30, 2021 @Isabel I have bilateral otosclerosis that led to deafness. I told my story in these 2 links if you are interested. Getting cochlear implants (even in the ear I thought was dead) was the best decision ever. I’m happy to answer any questions. https://cochlearimplantbasics.com/2021/06/mary-beth-napoli/ Quote Link to comment Share on other sites More sharing options...
Isabel Posted January 5, 2022 Author Report Share Posted January 5, 2022 Thank you Mary Beth! In the meantime, I had a closer look at this forum and found a lot of interesting information. I am still hesitant regarding the CI, but I guess it's good to be informed in case the situation gets worse and it will be necessary. For now, I wanna try with a bone conducted hearing aid or the CROSS I am using. Actually, I have one more question: Does it make sense to use Angel Sound to improve my hearing skills with a CROSS or an ADHEAR or even without any hearing aid or is it really specifically and exclusively for people with a CI? Angel Sound was mentioned in one of the posts in this forum and it seems to be very interesting! Also, I am curious, if there is anyone in this forum who has had good experiences with alternative/ holistic therapies for otosclerosis/hearing loss/tinnitus such as Chinese medicine, Ayurveda, acupuncture etc. I am considering a few options and am curious to hear about other people's experiences. Maybe you can tag this in the right section, I am still a bit lost here ; - ) And just one last question: I heard that the CI can also significantly decrease tinnitus. Is this true? Thanks again, Isabel Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 5, 2022 HearPeers Heroes Report Share Posted January 5, 2022 @Isabel Aural rehab is good for everyone, not just cochlear implant users. My CIs have made my tinnitus much better. It is not noticeable while wearing my processors and at night it is so much quieter than before. Here is a video that helps members get more comfortable on HearPeers. Quote Link to comment Share on other sites More sharing options...
Isabel Posted January 6, 2022 Author Report Share Posted January 6, 2022 Thanks so much! This forum is great🙂 Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
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