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October HearPeers Virtual Coffee Chat


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Hi Mary Beth. Just a quick heads up that unfortunately won’t be able to attend the HearPeers Virtual Coffee Chat next weekend. I had a hearing test and appointment with my otolaryngologist today and t

A fabulous chat today!  We had 10 HP members join in. I love how helpful everyone is sharing their own experiences with CIs and tech and helping each other troubleshoot. Our monthly chats ar

Link to my choir's channel, as discussed...  https://www.youtube.com/channel/UCZY6W1sKj6_s7cFep-ntorg/videos

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Hi Mary Beth!  Thank you for the note and kind thoughts. Yes, actually, things are going a bit better, though it looks like I’ll remain in the hospital through next week. They put me on a course of heavy cortico-steroids and (mostly) bed rest and it seem like that has more or less stopped the damage to my “good side” for the time being. My left-side lower tones (125Hz and 250Hz) had dropped to -70dB and -65db, but have clawed back up to 55db  and 60dB, respectively, since Monday. The mid-tones had not dropped quite so bad, but have leveled off and have climbed up an average 5db. That’s not great, but better than to continue free fall. Luckily, 2000Hz never wavered from -20dB, so I have retained some minimum functional hearing (my new CI is basically still non-functional at this point). My doctors are still stumped as to the cause and/or causes of the recent crash. There are good reasons to believe I have a perilymph fistula, and they are considering surgery. But some of my symptoms don’t fit that diagnosis and I’ve already had two fistula surgeries, with no clear sign of success with either. A competing or.complementary theory is that I developed a steroid deficiency, which kicks in whenever my oral intake of Prednisone drops below 5mg per day, or so. Trouble is, the Prednisone prevents my hearing from worsening, but doesn’t boost it back to a normal level. Sort of like holding the car from sliding over the cliff, but not getting it back on the road. The doctors are pretty sure that the hair cells are all good, because my hearing returned to virtually normal for a long time after my left-side hearing crashed back in 2017. Plus, no one really knows what serious bomb/concussion damage can do to electrical transmission along the auditory nerve, so that might be part of the problem, too. So I’m kind of like a science project. My doctors are considered the best in Japan (one of the younger guys plans to do advanced studies and teaching at Harvard’s MEEI this year if the COVID situation stabilizes), but they say they’ve never run into anything like this or read anything in the medical literature about it. The plan now is to stay in the hospital for another few days or a week, remain on heavy steroids and see what happens. Hopefully, continued slow improvement. Japanese hospitals are pretty comfortable: well-staffed, well-run, low cost. And best of all: Great Japanese food! Best to all, Kirk

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Thanks for the update @Kirk S.. You definitely are a science project! Sounds like you are in good hands. I certainly hope your medical team makes some positive discoveries soon! In the meantime, rest and enjoy that great Japanese food!

Sending lots of positive thoughts and best wishes to you. Will be looking for you on the November coffee chat!

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@Kirk S.

Thank you for the update.  I admire your positive outlook and know that it will help you through all of this.

I had two perilymph fistula repair surgeries after complications from stapendectomy surgeries on my right side.  I didn’t realize you had that experience too.

After things quiet down a bit, let’s chat about my experience with my left ear needing to have thresholds individually set for each electrode.  Have we talked about that yet?  It made a HUGE difference for my left ear.  As it turns out, that ear has very irregular thresholds.  Prior to individually setting each electrode’s threshold , the CI was sending quieter info to that ear which could not be heard.  It’s easy enough to do and worth a try when things quiet down for you.

 

We will miss you on Sunday.

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Oh, that’s exactly the kind of advice I need over here, Mary Beth. Thanks! I have an appointment with my new audiologists next week Friday, assuming I’m out of the hospital and I’ll pass it along. Hopefully they are experienced enough to do that. 

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@Kirk S.

With your processor connected to their computer, they play quiet beeps on an electrode.  You tell them when you hear the quietest beep.  They then set your threshold on that electrode one or two clicks lower.  Thresholds are the loudest beep that we can not hear.  Repeat for each electrode.

That’s my understanding of how we do it.

In fact, we just did that again with my left ear last week.  GREAT tweak to my MAP.

Most people do not need to do this since the default threshold settings in the software work fine.  (They worked fine for my right ear too.)  But my left ear presents irregular thresholds so this made a big difference for me.

 

Good luck!

 

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That’s very helpful, Mary Beth. Thanks! I’ll definitely pass it along to Kubota-san at my next appointment  since the default settings don’t seem to be very effective for me, so far. Of course, I know that everybody’s experience is a little different and I have plenty of patience for my brain to catch up. Even though the sound quality is still pretty yucky for me, the new CI has decreased my tinnitus to a tremendous degree, and that alone has made a tremendous improvement in my quality of life. Also, simply hearing a roughly equivalent level of sound entering both ears in tandem — whether they sound alike or not — provides a sense of “auditory balance” that I hadn’t release was causing a lot of extrr  problems. I see a lot of small kids with hearing problems in my hospital and at the new audiologists so I figure that if they can figure out something from my case that will help one or two kidsthen it will all be worth it. We’ ll see..

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Interesting @Mary Beth. I've had another mapping recently, it's done somewhat differently here!!! From what I've seen I'm asked too loud etc. The specialist wants the sounds to be as similar as possible, similar level if you see what I mean!!! . For example a loud sound played then a soft or lighter sound, I'm asked which is different or best so that she can program it. Have no idea about the range of threshhold that she inputs on the computer.  My hearing at the moment is a bit weird as it now has to get readjust to the new settings.

@Kirk S.Sorry to hear you are having problems, let's hope they will find a solution for you.😕

 

 

 

 

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@Tracey_66

Yes setting most comfortable loudness and balancing loudness is the way most MAPpings are performed here too.

 

The threshold setting I described for Kirk is not routine.  It is something we had to do for my left side which has irregular threshold levels.  Most people in the US do not need to individually have threshold levels set as the default threshold levels work for most.

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Frequency impact with face masks.  This is geared for hearing aid fittings but similar adjustments can be made by our CI audiologists to create special face mask programs.

 

 

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A fabulous chat today!  We had 10 HP members join in.

I love how helpful everyone is sharing their own experiences with CIs and tech and helping each other troubleshoot.

Our monthly chats are the best benefit of social media.  Friendships and connections worldwide.

Stay safe everyone.

As discussed, we will schedule a meeting for November and then skip December due to holidays and start back up in January.

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Thanks for the choir channel, @Kylie

Also, I meant to say when we were talking about the Artone neckloop that I often leave my office and walk to the printer, in another room while on calls.  I can hear, but can't speak, of course, but it's kind of cool to walk into another room and still know what's going on.

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@Mary Featherston

I can leave my phone in the living room and walk down to the basement to change the laundry  and keep hearing.  The range of the Artone is far better than any other connectivity option I have tested.

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