Advice for someone who had sudden single sided hearing loss and is considering a CI

[Mary Beth]

@Kylie will you share your experience here

@Jared Charney will you also share your experience here

I met someone today and want to give her a link to this topic.

 

Thanks

[Kylie]

I am happy to post some thoughts if they might be helpful. I am 3 years post activation now, wow that's gone fast! 

Of course it is possible to be be SSD long-term and many people choose to live with it, but there are also so many benefits to stereo hearing. Here are some of the changes I have experienced since becoming stereo again, after 1 year being deaf on that side:

I can locate sound and orient to it. Useful for safety like crossing roads, and people calling me, and my kids creeping up from behind, and playing hide and seek, and being able to track objects that aren't in my vision. My sound booth testing for sound orientation went from 0 to perfect in 6 months and I really notice it in daily life.

I can hear and understand things behind me, like conversation, quiet noises and music. My favourite use for this is when I'm driving - I can now hear my kids talking to me and hold a conversation, but when SSD I could not at all understand what they were saying - too quiet and distorted and no facial expression/lips to help. Now we can chat and sing like before!

I can sit anywhere, instead of manipulating the room to sit people on my good hearing side. And my friends and family and colleagues can sit anywhere too, instead of having to ask me 'is this the right side? can you hear me here?' Also I can sit further away - instead of having to sit at the front row of every meeting and concert.  

I can hear in noisy environments, that I was otherwise avoiding. I struggled at restaurants, weddings, funerals, parties, pubs, quiz nights - pretty much tried not to go out because I could hear soft babble but not understand it. I started to feel very isolated and disengaged from group settings, either not attending or sitting quietly out of the way. Now I can go anywhere and hear (nearly) anything over the din.

I can sing! I mean, I could still sing but I couldn't be sure what I was singing - not sure about volume and tone especially. Pitch was OK interestingly. As I sing in a small choir, the whole package is very important. I spent the time pre-CI constantly checking with my singing buddies how I sounded - am I too loud? can you hear me? did I get that expression right? Now I can tell for myself. However this remains the hardest aspect of my hearing - I do still struggle a bit to hear myself clearly (my voice sounds different to before) and my buddies on my CI side sound different to my 'normal' side. But I'm still getting used to that and hoping it continues to improve.

I can talk to people at a pleasant volume. Everyone tells me I tended to talk too loudly pre-CI, but I only found out after my activation - they were all too polite to mention it before that!

Overall everything is brighter and richer in sound. I am also happier. Just all the time. I guess a cumulative effect of all the above! My husband says even when I was newly activated and frustrated, I was still happier than pre-CI. 

This is all NOW. At the very start  I heard beeps and very electronic sounds. I could quickly discern (within hours/days) certain obvious noises and some words, but they all sounded like MIDI files. I could understand some speech but it wasn't very clear, then by few weeks in I could get soooooo much more speech correct. Of course my good ear was doing all the work in normal life, so I had to do all my rehab practice cabled or bluetoothed to a device, where I did specific hearing exercises or listened to audiobooks/documentaries/TED talks etc to practise speech. In the very early days I loved the immediate increase in hearing volume that the CI gave - I could really tell there were inputs from both side.  

The mixed sound I get from 2 different "ears" was better than expected. It did sound electronic vs natural at first but I quickly got used to the blended sound. It also initially sounded like 2 different sounds (slight echo) but that also quickly resolved as my brain adapted.  It now is just one beautiful rich stereo sound!

 

[Mary Beth]

@Kylie this is perfect!  Thank you so much!

@MED-EL Moderator I LOVE Kylie’s real life examples of the benefits of getting a CI for SSD!

[Mary Beth]

@JuliannM

nice to see you here!  Scroll up to read @Kylie’s experiences as single sided deaf with a CI.  We are a friendly group.  Post any questions you have by typing in the reply box!

[Jared Charney]

@JuliannM @Kylie @Mary Beth I can't even articulate the benefits I've reaped since my surgery but I'll say that every single day (about 1.5 years later) I'm beyond grateful as for me it has restored quite literally my sanity. In addition to greatly improving my hearing the fact that I personally no longer suffer from tinnitus was worth the surgery all on its own. The only time I hear it now is when I shower as although it took a long time to practice I now wear my Rondo 3 at night while I sleep to side step the ringing. It really is crucial to hear in stereo and have sound localization. I love being able to stream directly to my processor. My health has improved dramatically since implantation.