Only place to go is down…

I’ve often said that if this is the best my hearing gets, I’m happy with it.  Well, we have definitely reached “the best” in one sense.  In another sense, it’s back to terrible.  Had my one year mapping yesterday, with a new audiologist, and as with every mapping, today I hate it.  The good news is that my speech recognition scores came in at 100%.

So we’ll start with the good.  Speech recognition of 100% is unbelievable.  Fairly unheard of really.  The goal for a cochlear implant is 70%.  I’ve been past 70% since my first mapping.  My 6-months was at 98%.  This is awesome.  It really is the best it gets.  The audiogram itself was down slightly from the goal, but we had just adjusted the volume overall and I was distracted with emails on my phone during the test.  So I suspect it’s not as bad as it might look on paper – even then, it’s not “bad” at all.  It’s still above zero, which is where it was before activation.

I went in knowing what things I wanted changed.  Every day I found myself turning the volume on the CI down 1-2 spots, no matter what.  So I wanted the overall volume turned down.  In doing this, we tweaked certain electrodes as well (I still have electrode #16 turned off entirely, because it caused the tin can effect I’d been having, maybe next time we’ll turn it on).  I did not want to change too much, because I have a conference I’ll be at next week and I need to be on top of my game, which means hearing as best as possible.  Originally this mapping was scheduled for the end of September, so I would have had plenty of time for adjustments, but it kept getting rescheduled and rescheduled.  Hence seeing a new audiologist.

Cathy was the person who convinced me to go for the initial evaluation, and she was wonderful and amazing and got me this far.  Unfortunately, she is extremely booked and is difficult to get an appointment with.  So they finally added another CI audiologist at their office two days a week – Amanda.  Everything is new for Amanda, she’s pretty fresh out of school and this is her first job working with CI programming at all (she’s only done hearing aids in the past).  This is fun for me, because she’s still excited about everything.  We made tweaks to my music program, and to test I played whatever song was next on my phone – and it happened to be my recording of myself singing “I’m Not That Girl” from Wicked.  She loved it and was blown away that it was me.  That was cool.  She was very friendly and we had lovely conversations.  I think I’ll keep her.

The results of our tweaking, however, I’m not happy with today.  I know my brain will adjust and it will all be good again, but right now I want to cry.  Things sounded good, why did I change them?  Right now I’m using headphones and listening to my tried and true Debbie Gibson playlist and everything sounds like mushy crap again(*).  Two days ago, it all sounded great.  I’ll give it until Monday and will see if I need another quick change before I go off to the conference.

It’s incredibly frustrating not knowing if the changes will end up making things better in the long run or if they will remain worse.  Or if music will continue to suck but speech will stay awesome.  Do we keep trying and trying to get things to both music and speech are great or do I go back to “both are okay”?  I hate having to do listening exercises to train my brain after each mapping.  It means having to listen to things that don’t sound good and having to do it all day long. And it’s exhausting. Auditory fatigue is ridiculously real.

In the meantime, my hearing aid has also been having some issues because my earmold is cracked. My own fault for not getting it taken care of sooner – I could have gotten an appointment with any audiologist for this particular needed fix. Now at least the ball is rolling, so I hope it can hang on for a few more weeks until the new one is back. I think maybe somewhere I have an old one if this one does falls apart, but an old one is not going to fit right and I’ll end up with feedback (which annoys the people around me far more than me). But hey, with 100% speech recognition with just my CI that means I should be fine without my hearing aid right? HAHAHAHA. No. Doesn’t work that way in real life.

So while the news is good and I still hear amazingly well, I still want better. Unfortunately with this type of thing, you have to go through worse to get better.

*I’m seeing Deb in concert at the end of this month, so I really want my music to be spot on for this. It’s been 10 years since I last saw her!

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