VRobles Posted November 3, 2021 Report Share Posted November 3, 2021 44 year old male. I have lost my hearing in my left ear one month ago did the steroids orally but has not worked ear doctor didn’t think injections would help. My other ear is ok. So I’m thinking of a CI but don’t know much about them. I read people talk about how they hear sounds but my concern is words that is what I want. Does it sound different than the good ear or do they blind together? I’m so upset now seems like there’s not much that can be done. Asked if I could do the steroids again they said it’s for only two weeks Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 3, 2021 HearPeers Heroes Report Share Posted November 3, 2021 @VRobles Welcome to HearPeers. We are a friendly group. Feel free to ask questions. I will tag @Kylie and @Jared Charney as they both have single sided deafness with a CI. Wishing you the best! Quote Link to comment Share on other sites More sharing options...
VRobles Posted November 3, 2021 Author Report Share Posted November 3, 2021 Thank you it would be great to talk to someone about this don’t know if I should see another ENT and see if they will give me the steroids. I had a very small stroke that caused me ear to loose hearing October 1. My family Dr. didn’t think it’s a good idea to take the steroids again having had a stroke. The ENT said he advised not to do the injections because if I get the CI you don’t want to take the risk of the injection holes not closing and getting infections. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kylie Posted November 3, 2021 HearPeers Heroes Report Share Posted November 3, 2021 I also had a sudden hearing loss with an inner ear infection and only a brief course of steroids. I was then told i was left with whatever heading I had, though give it a few weeks to see if it will resolve further (it didn't). I had lost it all though my other ear was still normal in luckily. After getting used to the CI, which does sound strange at first, I now have just 1 'sound' with the 2 sides together. I don't even remember I'm wearing it most of the time, it feels natural. I have had it for 2 years. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
VRobles Posted November 3, 2021 Author Report Share Posted November 3, 2021 How is music, TV and Movies Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 3, 2021 HearPeers Heroes Report Share Posted November 3, 2021 @VRobles Music, TV and movies sound great with my bilateral CIs. Music took its own journey after activation and took longer than speech to sound good but now everything sounds very natural. Quote Link to comment Share on other sites More sharing options...
VRobles Posted November 4, 2021 Author Report Share Posted November 4, 2021 Kylie how does yours sound with TV, movies and music? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kylie Posted November 4, 2021 HearPeers Heroes Report Share Posted November 4, 2021 Listening with both ears (hearing ear + CI) = normal and amazing for TV, movies, live entertainment music. Love everything I hear. Just CI (blocking other ear) = 'pretty good' for TV and movies, 'quite good' for music but still improving. I only use just CI side when I am doing purposeful practise to make sure it keeps improving. Day to day when I'm at work or with my family etc I use both sides together. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
VRobles Posted November 4, 2021 Author Report Share Posted November 4, 2021 Are there any other single sided people with examples of their stories Quote Link to comment Share on other sites More sharing options...
Sgent Posted November 4, 2021 Report Share Posted November 4, 2021 I'm imd 40's and have had chronic ear infections my entire life. I got Meniure's disease and went deaf in my L ear over about 8 months ending right before COVID (still have tinnitus though!). Unfortunately about six months ago my balance system also started going haywire and my neurotologist and neurologist are fighting about whether its Meniure's or migraines. I'm having a estuation tube dialation + metal ear tube surgery done in a few weeks, and then will schedule a combo cochlear implant and labyrinthectomy (combo) after that heals. I must say that reading all of the reports, post surgical situations, etc. on this site is really encouraging. Thank you everyone for sharing. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 4, 2021 HearPeers Heroes Report Share Posted November 4, 2021 @Sgent Welcome to HearPeers. I had a labrynthectomy on my right side to stop the Ménière’s vertigo issues. Then that ear stayed completely deaf, processing no sound at all, for 24 years before being implanted. It is an amazing CI ear. It is great that surgeons are now doing simultaneous transcanal labrynthectomy and CI implant surgeries. Which CI center do you go to? I go to New York Eye & Ear in NYC. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 4, 2021 HearPeers Heroes Report Share Posted November 4, 2021 @VRobles Yes we have other single sided deaf with CI members. Hopefully you will hear from more soon. Maybe @VeroNika and @Gemmawill have time to chime in? Have you connected yet with your regional Med-El rep? They will be able to put you in contact with other single sided deaf with CI users. Have you seen these? https://blog.medel.com/a-hearing-therapist-chose-med-el-for-single-sided-deafness-ssd/ https://blog.medel.com/10-things-that-may-surprise-you-when-you-get-a-cochlear-implant/ Quote Link to comment Share on other sites More sharing options...
Sgent Posted November 4, 2021 Report Share Posted November 4, 2021 6 hours ago, Mary Beth said: @Sgent Welcome to HearPeers. I had a labrynthectomy on my right side to stop the Ménière’s vertigo issues. Then that ear stayed completely deaf, processing no sound at all, for 24 years before being implanted. It is an amazing CI ear. It is great that surgeons are now doing simultaneous transcanal labrynthectomy and CI implant surgeries. Which CI center do you go to? I go to New York Eye & Ear in NYC. The otologist I have been seeing is out of Ochsner in New Orleans, and I like him. He does a mix of cases, whereas the LSU otologists mostly work out of the children's hospital. I still want to talk to him about his / the centers numbers before scheduling the surgery, but will probably go with him unless I see red flags. I know they are are on the list for all three implant makers. Sgent Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
VRobles Posted November 6, 2021 Author Report Share Posted November 6, 2021 It says you can have MRI but what if you need one of your head is this possible? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 6, 2021 HearPeers Heroes Report Share Posted November 6, 2021 @VRobles https://blog.medel.com/the-complete-guide-to-mri-with-a-cochlear-implant/ Quote Link to comment Share on other sites More sharing options...
Kevin B. Posted May 10, 2022 Report Share Posted May 10, 2022 Hello, My name is Kevin, 43 years old. I was given a Meniere's Syndrome diagnosis in the left ear at age 19 after waking up with loud tinnitus (which went away), then fluctuating hearing loss "attacks" in the lower frequencies plus progressive loss in the upper frequencies. Fortunately, I do not experience vertigo. Attacks were intermittent over the year, and I was able to complete my music degree and enjoy playing and performing for many years despite loss of high frequency hearing in the left ear. On March 26th of this year, I lost all hearing in the left ear suddenly. I could feel that this "attack" was different. I went to the ENT and was prescribed oral steroid which had no effect and was given direct injections of steroid also to no effect. Now that I am single sided deaf with zero speech recognition on the left side, I am strongly considering a BAHA. My hearing in the right ear is excellent and I am still able to enjoy playing piano (my saxophone days are done I think), so BAHA would allow my good ear to experience the sounds from my dead side with high quality of sound. I don't know if I'm ready for a cochlear implant on the left side but would like to hear from any single-sided deaf people with CI to understand what the benefits and drawbacks are. It is a remarkable technology. I just don't know if I'm ready to make the commitment to adapting to it. Quote Link to comment Share on other sites More sharing options...
Kevin B. Posted May 10, 2022 Report Share Posted May 10, 2022 @VRobles RE: MRI. After sudden deafness in the left ear I was given an MRI of my brain and ear canals so yes it is possible. Quote Link to comment Share on other sites More sharing options...
Dianna Posted June 13, 2022 Report Share Posted June 13, 2022 I believe mri are possible with current med el implants. Please correct if i am wrong. Quote Link to comment Share on other sites More sharing options...
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