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Frustrating experience in one ear


gloriousgigahertz
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I'm bilaterally implanted for a bit over a year now and recognize I need to talk about this with my doc, and I will, but I wanted to get some community feedback too. My left ear was the second done and its performance is nowhere near as good as my right ear. I also have irregular but I'd say frequent bouts of pain (not where the physical processor is on my skull but deep in my ear). I also recently lost my audiologist to relocation. I've had a number of mappings and have done all the rehab but my left ear continues to just be meaningless chipmunky nonsense. My right ear is carrying me, but I'm not deriving benefits in noise or in situations with multiple speakers like I'd hoped. Anyone experienced similar? What did you do? I had a several hour drive earlier this week after two days of meetings and honestly thinking about it it was making me pretty frustrated, enough that I created an account here to...I guess vent. Woo. Thanks for coming to my TED Talk.

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  • HearPeers Heroes

Hello and welcome to HearPeers!

 

Have you had imaging done of your left ear AFTER your CI surgery to check on the placement of your electrode array?

 

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1 hour ago, Mary Beth said:

Hello and welcome to HearPeers!

 

Have you had imaging done of your left ear AFTER your CI surgery to check on the placement of your electrode array?

 

Nothing so far. If they did anything during the operation, it wasn't shared with me.

It's a thought I had after reading one person's experience on here about issues and finding from imaging that electrodes had gone outside of their cochlea. I know at not my last mapping but the one before that I had lost the furthest right electrode in the software (it was off the chart and was disabled), and the one next to that, the impedance had gone up a little more than halfway on the display. The time before that they were all "perfect" so something changed and maybe it's continuing to? This is something I expect will be required after I have a consult with my surgeon.

The other thing I forgot to mention in my post that occurs is that occasionally sound just cuts out. It's pretty rare but it actually happened twice this week. It happens with either of my processors in my left ear so I know it's not processor specific. If i take the processor off and reapply it sometimes comes back or sometimes it won't but then if i do it again it's always come back. I know these things are high tech and I know they're complicated and it's impossible to make perfect software so I've just kinda accepted that given my reticence with dealing with people and doctors in general...I suck at self advocacy.

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@gloriousgigahertz

In the US, Med-El has regional reps.

regional CEM (Consumer Engagement Manager) helps us and answers our questions 

regional CAM (Clinical Account Manager) are Med-El audiologists who support our clinical audiologists

regional CSR (customer service reps) help us with orders of parts and repairs

Contact your CEM through this link.  They can be very helpful.

https://web.cvent.com/event/bf4df0f5-e7e8-4282-9a9f-a09de31f4fc2/summary?rp=00000000-0000-0000-0000-000000000000

 

If I was you I would ask my CI surgeon for imaging to check the electrode array placement.  That would be my first request.

 

Definitely consider advocating for yourself.  You know something is not correct compared to your right CI.

Keep us posted.  We will be rooting for you.

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