Amy Leach Posted May 3 Report Share Posted May 3 I feel very good 3 weeks post-op. I still have a change in my tastebuds in a narrow strip on the left part of my tongue. I do hope it resolves and is not permanent. I wore a HA for about 10 years but then it was determined my loss was profound and the HA was not helping so no HA for the past 10 years. In 2015 I was told a CI would not help me but recently my PCP said to go back to the ENT clinic to see if things had changed. I was surprised in January when they said I was a candidate for a CI. I was implanted on April 9th and I will be activated on May 9th. I am keeping my expectations low. Is there anything I should keep in mind for activation day next week? 57 y/o female, left SSD, meniere's, cleft lip & palate, California, USA Joan, Sahib and Tim 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted May 3 HearPeers Heroes Report Share Posted May 3 Hi @Amy Leach wishing you the best at activation! That’s when the fun begins. We have several active HearPeers members from California. @Joan @Anne N @Deanne @Sahib Quote Link to comment Share on other sites More sharing options...
Sahib Posted May 3 Report Share Posted May 3 Hi Amy, Hello from San Diego, CA! I had my activation done when i was 5 and 8 years old, I’m 21 now so I don't remember anything. But I am profoundly deaf in both ears and cochlear implants have been such a life changing device for me. I haven't even realized that until recently. But I think you'll come to enjoy the one you will have the more you spend time with it. Take it slow and easy, give yourself “hearing breaks”, and be proud of how far you come. Wishing you all the best in your journey! Mary Beth, Amy Leach and Joan 3 Quote Link to comment Share on other sites More sharing options...
Members Tim Posted May 3 Members Report Share Posted May 3 Welcome @Amy Leach Mary Beth left me off the list but as an Oregonian, I'm at least "California-Adjacent", just 930 miles up the road on I-5 from @Sahib. 🙂 I'm SSD & similar age. I was activated in January 2023 so a little further down the road. Took me about 16 years of declining hearing on the bad side before I got my CI. Length of time without hearing might increase the time it takes to make progress in recovery. Like others have said, go into activation with low expectations. It took me several days or a week before I was able to start recognizing sounds and words on my CI. After two months, I was streaming audiobooks directly to the CI. Having a positive attitude and willingness to do troubleshooting, experimenting makes the hearing journey a lot more fun. Think of it as an adventure. The Hearpeers community is great. Feel free to ask questions. Amy Leach and Joan 2 Quote Link to comment Share on other sites More sharing options...
Joan Posted May 3 Report Share Posted May 3 Welcome @Amy Leach! As @Mary Beth said, your fun is about to begin! But, as the others also have said, that fun comes with work, determination, and tons of patience on your part.😊 I’ve been active for ten years and, without a doubt, it’s the single best thing I’ve ever done for myself. I agree with what both @Sahib and @Tim said. Go in with low expectations and a positive attitude and prepare to be impressed with your progress. Keep us updated on your progress and, as Tim said, feel free to ask questions. Best of luck to you!! Mary Beth and Amy Leach 2 Quote Link to comment Share on other sites More sharing options...
Deanne Posted May 4 Report Share Posted May 4 Welcome @Amy Leach, I am quite new to this having been implanted and activated in January. It totally exceeded my expectations. I was diagnosed is 2015 with bilateral acoustic neuromas (AN). After having cyberknife on both sides to inhibit further growth, my hearing deteriorated to 0% word comprehension on my left and around 20% in my right. A CI was suggested around 2020, but I wasn’t ready. When my right ear dropped in 2023, I decided it was time. I truly thought I would have little success, I found minimal information on AN and CI, but figured I could only improve. I heard voices at my activation and it has only gotten better. I got my life back. The best thing to do is expect nothing and hope for something. Be diligent in your rehab, it’s work, but well worth it. the technology is amazing, enjoy! Deanne Joan and Amy Leach 2 Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted May 4 Author Report Share Posted May 4 Thank you all for the tips and encouragement. I was hesitant to post initially but so glad that I did. Your posts have given me great comfort as I approach the unknown. I will let you know how it goes on Thursday. I am very fortunate because I live a few blocks away from the Otolaryngology Clinic at UC Davis Medical Center in Sacramento. Mary Beth, Joan, Deanne and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted May 9 Author Report Share Posted May 9 I got activated a few hours ago. Things are going very well. I got 100 percent on word recognition with the written sentence follow along test and 86 and 80 percent on the open word test. When I went in January for evaluation I basically got zero percent correct. I am hearing a kind of metallic hiss with sounds but it is already less noticeable than a few hours ago. I am a little overwhelmed with all the equipment and boxes. It is definitely more than I even expected. I am going to take a break and go sit with my dogs and watch some tv, then come back to the pile of user manuals. I have a feeling I will be asking the group some questions tomorrow. BTW I can’t stop smiling! Anthony Canada, Tim, Joan and 1 other 4 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted May 9 HearPeers Heroes Report Share Posted May 9 Excellent start @Amy Leach! We welcome your questions! And you may also want to sign up for the free Med-El Mondays that are aimed at helping new users get comfortable with everything in their kits. https://www.medel.com/en-us/about-medel/usa/us-events#Mondays Quote Link to comment Share on other sites More sharing options...
JosephL Posted May 9 Report Share Posted May 9 Congrats Amy, especially with such great scores on day one. It is such a long wait between surgery and activation but well worth it…...now the fun and rediscovery begins. Mary Beth’s suggestion of MED-El Mondays and the MED-EL 1:1 are great recommendations. I found it to be very helpful. All the best, Joe Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Anthony Canada Posted May 9 Report Share Posted May 9 100% on words is incredible! Congratulations. Quote Link to comment Share on other sites More sharing options...
Joan Posted May 10 Report Share Posted May 10 @Amy Leach your CI journey is off to a terrific start! Congratulations!😊🎉 Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted May 10 Author Report Share Posted May 10 It can be challenging to explain to people that I am not fully hearing clear distinct words yet but on that test with the script with one word missing that the audiologist filled in and i had to say that word from two word choices that sounded similar I got 100 percent correct. I think the free word test where she just talked i got between 80 and 85 percent which is still awesome. We worried that since it had been over 10 years I might not get anything. In January I got zero words in that ear. I’m definitely going to do the Med El Monday thing and I can see why that is necessary. Is there a list of a simply explained “if you want to stream the iPad exercises from the various training Apps into the CI without my spouse having to hear it then you need to use X equipment and this is how it works”? I got the phone call directly into the CI and that was easy. And this was strange. In bed I use the Calm App with a regular Apple earphone only in my good ear. I listened to a sleep story that I have heard about 10 times but last night I could hear all kinds of background effects in the story that I never heard before. Did the CI activation also kind of wake up my brain for my good ear too. I was astounded at what I was hearing. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted May 10 HearPeers Heroes Report Share Posted May 10 @Amy Leach you can use the AudioStream battery cover with your Sonnet2 to stream all audio from a phone or tablet to your processor without anyone else hearing anything so that would be an easy way to stream audio for training Amy Leach 1 Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted May 10 Author Report Share Posted May 10 Thank you Mary Beth, I don’t think I have the AudioStream cover on my Sonnet 2. It looks like a regular cover. I will go through my boxes and see if I can find that piece. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted May 10 HearPeers Heroes Report Share Posted May 10 @Amy Leach How did you stream the phone call to your processor? Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted May 10 Author Report Share Posted May 10 Mary Beth I used the AudioLink Bluetooth feature. Thanks for the tip earlier about the AudioStream battery cover. It worked with my IPad very easily. I have been using the Hearoes App this morning. I’m better on the high tones than the low ones. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted May 10 HearPeers Heroes Report Share Posted May 10 You are welcome AudioStream will work on both your iPad and your iPhone but can be connected to only one at a time AudioLink will stream audio that is not a phone call ONLY when you run Audio2Ear free app in the background. I much prefer the sound quality of AudioStream but AudioLink does give you control over the mixing ratios. Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted May 10 Author Report Share Posted May 10 Mary Beth, Thanks so much for the help. So do you leave the AudioStream on all the time or just put it on as needed? I am using it for training by streaming audiobooks and using the Hearoes App. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted May 10 HearPeers Heroes Report Share Posted May 10 Many people use the AudioStream cover as their everyday cover and just always have it on. Quote Link to comment Share on other sites More sharing options...
Members Tim Posted May 10 Members Report Share Posted May 10 @Amy Leach On the Sonnet 2, I'm an audiostream 99% of the time user. The only time I switch to the standard cover is when I want to wear it under headphones for yardwork or plane travel. I can go weeks without pulling out the standard cover. I use the max cover much less than that. (If only they had included an audiostream for the Max. Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted Monday at 09:01 PM Author Report Share Posted Monday at 09:01 PM Today is day 5 since activation and it is still going very well! I took a FaceTime call yesterday directly into the CI and I felt like I was able to get 90% or more of the conversation with the visual cues necessary as assistance. During the call I would test how long I could close my eyes and just rely on the CI. When using both the CI and my good ear without a plug, I get fairly normal hearing. Taps and clicks are definitely more pronounced. My dog was enjoying her chewy and her bites on the chewy sounded like a loud crack of a whip. When I only have the CI fed directly I hear the robotic and Mickey Mouse voices. I have hardly said "what" in 5 days. I tried some music yesterday just for fun. I don't hear much of the instruments except for the drums. I could follow lyrics if I really knew the song. I was using Apple's 80;s Playlist for familiar songs. I am still working on learning the technology. I can stream my audiobook from my iPad but haven't been successful with the iPhone yet. I was able to stream a phone call from the iPhone though. I have more reading to do and I will sign up for a Med-El Monday. I was derailed a bit this weekend as my neck got totally locked up (old break plus I think I am sleeping differently to avoid the implant side). I looked at a timeline for milestones for speech recognition for CI's and at day 5 I am doing 3-6 months for word and sentence recognition. Is it like normal hearing?....No but already it really helps me follow conversations. Things will only improve from here. Thankyou everyone who have helped answer my technical questions. Amy Kylie and Tim 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted Monday at 09:28 PM HearPeers Heroes Report Share Posted Monday at 09:28 PM @Amy Leach such a wonderful start! Quote Link to comment Share on other sites More sharing options...
Amy Leach Posted Tuesday at 06:55 PM Author Report Share Posted Tuesday at 06:55 PM Was in the car and had on an old Billy Joel album. I could hear the general back beat which made the song recognizable but not many words came through. All of a sudden a guitar riff was very clear. This is all so amazing. I am sitting outside doing my homework and I was able to hear the mailman was across the street on my CI side. I would not have heard him before with just the bad ear. Kylie, NathalieM and Mary Beth 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted Tuesday at 07:00 PM HearPeers Heroes Report Share Posted Tuesday at 07:00 PM @Amy Leach I call these WOW moments. Keep a journal of them. It’s fun to look back from time to time! Quote Link to comment Share on other sites More sharing options...
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