Arielle511 Posted July 15, 2016 Report Share Posted July 15, 2016 Is anyone on here bilateral? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 15, 2016 HearPeers Heroes Report Share Posted July 15, 2016 Hello Arielle - welcome to the Hearpeers! Yes - Mary Beth is here and she will soon drop in. Do you have any question related that issue? Quote Link to comment Share on other sites More sharing options...
Arielle511 Posted July 15, 2016 Author Report Share Posted July 15, 2016 I'm debating if I should get bilateral but I have 85db in my good ear and I'm scared to lose the rest of the hearing. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 15, 2016 HearPeers Heroes Report Share Posted July 15, 2016 85dB through whole frequency range? How fast is it getting worse? Quote Link to comment Share on other sites More sharing options...
Arielle511 Posted July 15, 2016 Author Report Share Posted July 15, 2016 It's pretty fast to me. I have sudden hearing loss from an brain injury. It started when I was 20 and I'm 27 now. My right ear went from normal hearing to 100db in that time but my left is a little slower. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 15, 2016 HearPeers Heroes Report Share Posted July 15, 2016 Presently, there is no unique decision when to implant. If something is inevitable - it is inevitable... Sooner the process of active and meaningful hearing starts - the shorter will be aural rehabilitation. Also, what should have in mind in your case - getting hearing loss as the consequence of brain injury results with fulminant ossifying of cochlea which can result with unsuccesful implantation.... Quote Link to comment Share on other sites More sharing options...
Arielle511 Posted July 15, 2016 Author Report Share Posted July 15, 2016 I have thought about that but I have tried a hearing aid it worked for awhile. I have thought about the CI for 2 years and just think what would it hurt. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 15, 2016 HearPeers Heroes Report Share Posted July 15, 2016 Hi, I am bilateral. My first implanted ear was no risk as far as losing hearing because it heard nothing with the most powerful HAs out there. It had a speech discrimination score of 0%. It was and still is the most amazing thing that my "dead ear" is hearing so well with a CI. It amazes me everyday. I'm a Teacher of the Deaf and my students used to assume that my unaided ear heard fine. I always told them that my right ear was only good for holding up my eyeglasses. Smile. Well not anymore! I peaked at bimodal (using one CI and one HA) functioning at the 3 month point post activation. After that, my CI ear just was so far ahead of what I heard in my HA ear that the HA ear was of no benefit. By 5 months, it was a distraction. I performed better with my one CI alone. I want to be clear about one thing. The hearing in my HA ear did not change during these 5 months. It's just that my brain was so good at understanding the CI signal, it no longer wanted to sort out the messy, incomplete signal from my HA. I did have a progressive hearing loss, but it did not change during those 5 months. It had the same exact results on my audiogram. I was ready for a second CI by 6 months so I started the process and was implanted with my second CI and activated at 8 months. I had qualified for CIs in both ears at my initial testing so I knew I would qualify for a CI in my left ear. For me, I'm glad that my CI surgeries were sequential. My right ear needed that dedicated rehab time since it had not heard anything for 24 years. My left ear has progressed much faster (although it did have a slower initial start). I was balanced by 5 months. My CIs test out almost exactly the same. I can do everything with either one solo (phone, podcast, music, etc) but together everything sounds so much better and listening is so much easier. If you are interested in bilateral CIs, just talk with your CI team. Sometimes adults get simultaneous bilateral CIs. It seems more common for adults to get sequential CIs. Best of luck, Mary Beth Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 16, 2016 HearPeers Heroes Report Share Posted July 16, 2016 Mary Beth, I am amazed each time so I really have to ask you - although your surgeon was not convinced at all, how did you finally made up your mind to actually go through the process of implantation? Would you proceed with other ear if your results on 100% deaf ear was not so good? Quote Link to comment Share on other sites More sharing options...
Arielle511 Posted July 16, 2016 Author Report Share Posted July 16, 2016 It took me 2 years to decide. I think that I'm more scared not to try than trying and it failing. I haven't talked to too many people that have had it but all the ones I have spoken with say they are very happy with it even going bilateral all at once. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 17, 2016 HearPeers Heroes Report Share Posted July 17, 2016 Ivana, We almost left that appointment deciding not to get the implant. It was a somber, overwhelming appointment for sure. I made the decision to go ahead and try it, even knowing the chances of inserting an electrode were iffy and that open set speech understanding was not anticipated, because I was desperate. I was no longer able to function with the limited hearing in my other ear. My life was shrinking so fast. I wasn't sure I would be able to stay effective at my job. I could only converse 1:1 due to the need to speech read. I was constantly saying either "I can't hear you." or "Don't yell at me." because my dynamic range was only 15 dB so basically people had to walk a tightrope to stay in a comfortable range for me. I was so frustrated. I didn't want to have a bad experience with my first CI so I hesitated about getting it after hearing the prognosis. That's the honest truth. I was desperate to hear better so I could function in my life. I was willing to try and hope for the best. I approached it in stages. First hurdle- Can my surgeon insert an electrode at all? Which electrode? When my surgeon was successful in implanting the medium 24 electrode array I was overjoyed. That was his first choice based on my cochlea. First hurdle crossed! Second hurdle- Will I hear anything at activation? I was hoping for 12 beeps which hopefully did not sound the same. When my audiologist activated me, I heard twelve beeps. Some sounded better than others but they all sounded different. Second hurdle crossed! Third hurdle- Can my brain break this code and understand speech? We started training right away on the 5 hour car ride home. Smile. Green, yellow, magenta. Listen and count syllables and see if I can do it. Grape, Apple, banana. Repeat. I had my first open set speech understanding on that car ride home when Jill said WOW. I said, "Did you just say WOW?". She said she did and we laughed and laughed. Then I heard her say "Far out!". I said, "Did you just say FAR OUT?" And that's how it all began. Smile. I trained my right CI for 2-3 hours daily. I was dedicated and I was lucky that everything worked out so well. That's the story about the start of my CI journey, my friend. It's been amazing! I am still in awe every morning when my dead ear hears! Mary Beth Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 17, 2016 HearPeers Heroes Report Share Posted July 17, 2016 Amazing and extraordinary story, Mary Beth... It's interesting how many of us reached the level of total despair and then tried to parlay into somethiing meaningful... Investing not much except our hope, yet reaching stars just with so little we have - our brain and heart. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 17, 2016 HearPeers Heroes Report Share Posted July 17, 2016 It took me 2 years to decide. I think that I'm more scared not to try than trying and it failing. I haven't talked to too many people that have had it but all the ones I have spoken with say they are very happy with it even going bilateral all at once. It is a good start Arielle... Good long and thorough rethink of the situation give you a perspective. Each path is individual but can excell into parlay... I guess this is enough for trying...? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 17, 2016 HearPeers Heroes Report Share Posted July 17, 2016 Thank goodness for the plasticity of our brains! Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 17, 2016 HearPeers Heroes Report Share Posted July 17, 2016 Thank goodness for the plasticity of our brains! Yes - Practice, be Patient - Persevere... Quote Link to comment Share on other sites More sharing options...
Ms_D Posted July 18, 2016 Report Share Posted July 18, 2016 I'm bilateral. :-) Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted July 18, 2016 HearPeers Heroes Report Share Posted July 18, 2016 I'm bilateral. :-) Ms_D 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 19, 2016 HearPeers Heroes Report Share Posted July 19, 2016 Donna...YEAH, Ms_D 1 Quote Link to comment Share on other sites More sharing options...
Arielle511 Posted July 21, 2016 Author Report Share Posted July 21, 2016 So I decided to just get my right ear implanted and get a HA for my left. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 21, 2016 HearPeers Heroes Report Share Posted July 21, 2016 Best of luck to you. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jdashiell Posted January 30, 2017 HearPeers Heroes Report Share Posted January 30, 2017 I am scheduled for my second (left ear) surgery in two months, March 23, exactly one year apart from my first surgery. I am and have been happy and excited about this new chapter. I cannot even hear my own voice without my CI and HA. I am uncertain as to the dB level of my current left ear residual hearing but know it is basically nill - for all practical purposes. This leads me to want this second CI My doubts and second-thoughts are I can hear with my left ear HA, although it is nearly 4 years old, and will need some service soon (battery door cracked). Am I rushing this? There is some residual hearing in that ear. My wife says yes, because she can tell me something without the HA in - she has to speak into the ear canal. I say big deal! there is nothing there, not doorbell or for knock, no TV, no Telephone - zip This not much of a doubt in my mind. Therefore I am convinced this is the way to go and have the surgery scheduled, and the CI ordered - Rondo and Sonnet just like right side. My question to the group is: Does or did anyone else have second thoughts on getting their second CI? Why? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 30, 2017 HearPeers Heroes Report Share Posted January 30, 2017 It's a big step for those of us who have no residual hearing post surgery. It requires a bit of an adjustment (mostly mindset, smile). It was an awesome decision for me. I love hearing with bilateral CIs. No regrets at all. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted January 31, 2017 HearPeers Heroes Report Share Posted January 31, 2017 Arielle511 can you update us on how you are doing? My story is similar to Marybeth. I was bilateral sequential. I really had no speech discrimination in either ear. I originally wanted to go bilateral but my hospital only does bilateral sequential. I am kind of glad it worked out that way. Quote Link to comment Share on other sites More sharing options...
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