HearPeers Heroes Mary Featherston Posted March 19, 2018 HearPeers Heroes Report Share Posted March 19, 2018 Hello all, I'm in the process of getting my first CI. I have had a progressively worse hearing impairment pretty much since birth, first diagnosed as a child and had my first hearing aid when I was 14. For most of the last 30 years I've worn two hearing aids, but they are helping less and less and I can't speak on the phone anymore (or hear voice mail at all). I can occasionally hear on speakerphone, but the handset not at all. This winter I was identified as a candidate for CIs when we learned that my word comprehension score is 19 (!!). Right now I'm waiting on my insurance company to authorize the CIs. I've had my hearing tests, I've had my CT scan - once I get the authorization it's just a question of OR room schedules. I'm lucky in that there are several good CIs clinics in my area; I was referred to the University of Minnesota medical center and it's only 45 minutes from home and so far I feel as though I'm in good hands. Right now my left ear has more hearing than my right but I know I want to go bilateral. My problem now is do I go bilateral all at once, or one at a time? The surgeon offered me all at once and she doesn't seem to think that there's much risk involved. My fear is that with the loss of my residual hearing, that if the CIs don't help, I'm left completely deaf. The surgeon said that she's never seen anyone who isn't helped to some degree. The worst results she's seen are better than my measly 19 word comprehension score. And my CT scan showed no abnormalities of the inner ear that would indicate there's something that won't work. And yet......what if? What are your experiences? Would you go bilateral all at once? Am I afraid of something that's very unlikely to happen? I've gone back and forth from "bilateral" to "right ear only to start" about fourteen times now. Any input at all would be gratefully received. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 19, 2018 HearPeers Heroes Report Share Posted March 19, 2018 Welcome @Mary Featherston! I have friends who did simultaneous bilateral CIs and they loved having to only go through surgery once and training both sides together. They have no regrets. I did my bilateral CIs sequentially 8 months apart. That worked out great for me. Either way you do it, bilateral CIs are amazing! Wishing you the best! Jdashiell 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted March 19, 2018 Author HearPeers Heroes Report Share Posted March 19, 2018 Have you ever heard of someone who was diagnosed and identified as a CI candidate and was not helped by the devices? That's my fear. Quote Link to comment Share on other sites More sharing options...
AliU83 Posted March 19, 2018 Report Share Posted March 19, 2018 Hi Mary, I recently got my first implant turned on October 2017. I wanted to write back because I had similar concerns as you. First of all, I was born hearing, but developed a severe loss at 7 years old. So, I have been hard of hearing my entire life. I went a good 25+ years this way, and was told in 2015 I was a CI candidate. My speech score was also always awful (mine was a high of 10%! In addition, it was never higher since my loss occurred), which is why I never wore hearing aids. I went by with lipreading and using the sound i had left and did pretty good! All in all, I was really nervous about the CI damaging my hearing and not working. My doctor and audiologist were very honest with me--that i was a good candidate, having been able to hear sound as a child and still a decent amount even though my loss was so profound. I was never deaf. They didn't guarantee any sort of success with the CI. in 2015, I came to terms that my hearing was not doing much anymore, and the consequences of losing my hearing or having the CI not work were not severe, since I had barely any hearing left. After getting the CI turned on, I realized how amazing the brain is... my brain remembered ALL the sounds it had been able to hear before. it was unbelievable how quickly sounds came in. The sounds that my brain could never hear well (low pitches), took longer to come in. But I can say that for me, the CI was helpful as soon as the week it was turned on. Not everyone can say that. 4 months after my switch on, my speech score was 40% of full words and 66% of partial--which is insane, considering it was never higher than 10% since the age of 7. That test was in January--I have to go back in April for another, and I am already positive it's increased beyond that. After my experience, I really believe that you have take the words and advice of your doctor to heart. I trusted my team at Mass Eye and Ear, and believed them when they told me I was a good candidate. They were absolutely right, and I can see now that my past ability to hear (both up until I was 7, and all the partial hearing I had after that) is a huge reason for my success with the CI. I would never have gone bilateral without seeing the success of one first. In my research of CI's, I talked to about 15 people of their experiences. I never met with quite the same history as me. Not one of them regretted the CI. I have also heard once or twice that people know others who were not helped by the CI, but I don't know the history behind those stories. I realized from reading their accounts, and experiencing my own, that the adaption period ranges vastly from person to person. I was lucky that I adapted so quickly. Hope this helps, and happy to talk further if you want! Jewel and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted March 19, 2018 Author HearPeers Heroes Report Share Posted March 19, 2018 Thanks very much, Ali, your story is pretty similar to mine! I just got an email from my audiologist saying much the same thing - the CIs *will* work. It's just a question of how much hearing I'll regain. But like you, I've been hearing all along - just badly. :-) Basically, hearing that my audiologist agrees with my surgeon is making me lean back towards going bilateral all at once. I believe that the rehab will go better because I won't have another ear to rely on. But I guarantee you that I will be nervous the entire time between surgery and the activation! Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
AliU83 Posted March 19, 2018 Report Share Posted March 19, 2018 I was very nervous for the surgery... I actually had bad luck and had an allergic reaction to my antibiotic. I had never had surgery before, and had no known allergies.... I ended up not being able to get the implant the first time around because my reaction was so severe. It had nothing to do with the implant itself! I had a series of allergy testing done after my first try, and they successfully pinpointed what went wrong. When I went in the 2nd time, everything went smoothly. I was so lucky that Boston has such great hospitals. My recovery was as expected, I was at work less than a week later. Take your time to recover! I felt that I had to wait forever for activation! I was accident scheduled under the wrong audiologist, and didn't notice until close to the appointment. At that point, I had to wait a bit longer to get scheduled with the right person. i went about 6-7 weeks between surgery and activation... I was definitely eager, but not nervous. Ali Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted March 19, 2018 HearPeers Heroes Report Share Posted March 19, 2018 Hi Mary! Welcome to the group! Yes I was just as worried as you when I began my journey. But I am about to go bilateral next week! I love my first CI. It has helped me get my indepence back. I can use the phone and listen to music. Plus I can hear in crowds too. With program adjustments of course. We’ll teach you about that later. First off you will need to do extensive rehab to get good results. Look at our aural rehab forum for great tips and apps etc for triaining. I would say do what works for you. Can you take time off work while you wait for things to get working or not. It is true that doing two at once is one surgery better than two. Plus two devices to start with instead of one. But it’s up to you. Keep us posted and best of luck!! Kara? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 19, 2018 HearPeers Heroes Report Share Posted March 19, 2018 @Mary Featherston, which processors are you selecting? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted March 20, 2018 Author HearPeers Heroes Report Share Posted March 20, 2018 Mary Beth: Sonnets, but I am taking advantage of the PlusRondo offer as well. I like the idea of not having a processor behind my ears - I have glasses too. I will be interested to learn the differences between types. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted March 20, 2018 Author HearPeers Heroes Report Share Posted March 20, 2018 Yikes, Ali, that antibiotic allergy sounds scary. I'm glad you got past it. Kara, thank you! I really appreciate the support offered by the users group here. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 20, 2018 HearPeers Heroes Report Share Posted March 20, 2018 @Mary Featherston I love my Rondos, especially for waterwear use. In my opinion, nothing beats Rondos in waterwear. The waterwear cover is skin tight so you do not even know it is on. Everything sounds wonderful! I don’t know about the Rondo 2 but the Rondo sinks like a stone in water if it gets knocked off so secure it well. I swim with my Rondos in the ocean and pool. They are fabulous! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted March 20, 2018 Author HearPeers Heroes Report Share Posted March 20, 2018 Sounds great! It's been a while since I've been swimming. So Mary Beth, I see in your sig that you had your implants about seven months apart. If I don't go bilateral all at once I do want to try to get the second surgery in this year. I'm so looking forward to directional hearing! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 20, 2018 HearPeers Heroes Report Share Posted March 20, 2018 @Mary Featherston I had a completely deaf ear, unable to process any auditory info, for 24 years before receiving my first CI so I had not been able to hear from two sides for a long long time. Being bilateral with balanced CI sides has been awesome! I can locate the direction of sounds, enjoy different left and right musical info with headphones and so much more. I love being bilateral. When do you have to decide about simultaneous versus sequential CIs? Is your CI center a two processor center? 2 Sonnets and the plus Rondo 2? That is a great way to start. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted March 20, 2018 Author HearPeers Heroes Report Share Posted March 20, 2018 My surgeon submitted me for bilateral to the insurance company, but I can step it back to one at a time. I have to decide before we schedule the surgery because if I do bilateral it makes the procedure take longer than they can schedule in the surgery center so I'll be in the regular hospital. Yes, the audiologist said that I'd get 2 Sonnets and the Rondo 2s because of the offer. The timing is great for me. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 20, 2018 HearPeers Heroes Report Share Posted March 20, 2018 Sounds terrific! Let us know what you decide. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jdashiell Posted March 21, 2018 HearPeers Heroes Report Share Posted March 21, 2018 Everyone has a unique etiology or hearing loss history. That and many other factors determine whether one is bilaterally implanted at once, it also determines how well you adapt to hearing with a CI in any case the outcome is predominantly great compared to those who do not succeed . Those few likely have unique issues that result in performance failure. Jewel 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Featherston Posted March 21, 2018 Author HearPeers Heroes Report Share Posted March 21, 2018 @Jdashiell - yes, my challenge now is whether I can be confident enough in the outcome to go bilateral all at once and not drive myself completely crazy during the period between the surgery and activation. I am unaware of any anomalous issues with my ears or my hearing that would prevent success; but I don't imagine the few who experience less than productive outcomes did either. Jdashiell 1 Quote Link to comment Share on other sites More sharing options...
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