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Evren

Some concerns before the surgery

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Hey everyone,

I just signed up but I was surfing the forum for a year since I got interested on CI's. Many cool stories here :)

So, my name is Evren and I'm from Turkey. I'm getting my first time surgery on August 21st, along with my mother who also is a first timer. I'm 35 years old and using bilateral hearing aids since my 18. We both decided on Rondo 2.

I do not have many concerns for myself (for now), my concern is for my mother. She's 62, and most of her life she didn't use hearing aid until 4 years ago and she relies heavily on lipreading. She only use HA on one ear.  Our audiogram output is almost the same (av. 90-95db sensorinueral postlingual loss, moderately severe+ in low freq, profound+ on high freq) My mother is slightly better than me on lows.

I'd like to hear your stories -if you have any kind of similar one- to compare "befores and afters" of surgery about lipreading and CI performance. Our main concer is My mother's not getting a decent speech perception much like her HA, so we don't want her surgery to become a a total waste. Though, I still believe that she might start to hear sounds like doorbell, birds chirping etc she never heard since childhood. 

 

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Hello @Evren and welcome to HearPeers! We are a friendly group and look forward to getting to know you.

It’s quite special that you and your mother are sharing this CI journey together.  Are both of your surgeries on August 21?

The Rondo 2 is a beautiful processor.  I still am amazed at how light it feels.  I tried on a demo.  I have Rondo 1 and love it in waterwear.

It’s so difficult to predict how any of us will do with a CI.  Sometimes we end up much better than anyone even hoped.  That happened to me for my first ear.  It had not processed any speech in 24 years after a surgery to deal with meniere’s.  It had heard with a hearing aid before then.  The professionals had guarded hopes for my listening ability with a CI in that ear.  A totally deaf ear for 24 years and a complicated cochlea that presented difficulties for inserting an electrode were valid reasons for everyone’s concerns.  I almost did not have the surgery.  But then I decided it was worth a try.

I hoped for the best.....

-the electrode could be inserted in my complicated cochlea

-at activation I would hear the beeps 

-the 12 beeps would not all sound the same.

I was lucky and all 3 wishes came true.

Then I committed to training my brain every day for several hours. (See our REHAB topic for lots of suggestions and links.)

I was so fortunate that everything worked out so much better than anyone’s wildest hopes.  It is an amazing CI ear.  It hears everything so well.  I am so happy I decided to give it a chance.

I hope your mother is just as fortunate.

Wishing you both the very best!

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Hello @Mary Beth big fan of you in the forum :)

Yes, we both will have the surgery on the same day! Great to hear you progressed well on your CI journey. I'm really excited about how our results will end up. 

Thank you so much, can't wait to share more of my journey with you guys. 

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Hi @Evren

August 21 is a good date! That's the date I had my CI surgery last year! 

There really are no guarantees. I was losing my hearing over about 20 years. Started wearing a HA in my "better" ear in 2009 but hardly ever wore the HAs I bought. I relied on lipreading a lot. My low frequency hearing was enough for me to qualify for the Sonnet EAS prior to surgery but I lost most of that following surgery. 

Years ago I felt that all the birds in my hometown had migrated to the country. Lo and behold I got activated with the CI and was shocked to hear so many birds chirping! 

I had not been able to hear on the phone for several years and now thanks to the CI I don't have to hesitate to answer the phone or make a phone call. 

I hardly ever lipread these days. 

As @Mary Bethsaid we have to put in a lot of work after activation in order to hear again. I immersed myself in sound and did lots of aural rehab. Nowadays I don't do so much rehab but it certainly does help one progress quicker.

I think getting the CI was one of the best decisions I ever made and I trust you and your mom will feel the same. 

Congrats on choosing the Rondo2! I love mine! 

I got the Synchrony with Pin Flex 28 implant. Which one are you and mum getting? 

Please keep us posted about your journey. 

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Wow almost a year already for you @Jewel!

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Yes and what a year it has been! @Mary Beth

Interestingly I saw a little girl wearing CI and a HA today. I asked her mum if it was AB. She said yes. Unfortunately she didn't seem too chatty. I wish I had a local group of CIBorgs here. Good to have local support. 

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@Jewel

We aren’t local but if you ever want to try to schedule a meet up event again, I am in!

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@Mary Beth

Sounds good! We can aim for sometime next year. I'm flexible... Whenever most are available. 

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9 hours ago, Jewel said:

Hi @Evren

August 21 is a good date! That's the date I had my CI surgery last year! 

There really are no guarantees. I was losing my hearing over about 20 years. Started wearing a HA in my "better" ear but hardly ever wore the HAs I bought. I relied on lipreading a lot. My low frequency hearing was enough for me to qualify for the Sonnet EAS prior to surgery but I lost most of that following surgery. 

Years ago I felt that all the birds in my hometown had migrated to the country. Lo and behold I got activated with the CI and was shocked to hear so many birds chirping! 

I had not been able to hear on the phone for several years and now thanks to the CI I don't have to hesitate to answer the phone or make a phone call. 

I hardly ever lipread these days. 

As @Mary Bethsaid we have to put in a lot of work after activation in order to hear again. I immersed myself in sound and did lots of aural rehab. Nowadays I don't do so much rehab but it certainly does help one progress quicker.

I think getting the CI was one of the best decisions I ever made and I trust you and your mom will feel the same. 

Congrats on choosing the Rondo2! I love mine! 

I got the Synchrony with Pin Flex 28 implant. Which one are you and mum getting? 

Please keep us posted about your journey. 

Hi @Jewel nice to meet you!

I know we'll get the latest Synchrony implant with 3.0 Tesla MRI safety and flex electrodes, should ask the professionals about further details though, thanks for reminding me :)

I don't rely on lipreading most of the time, actually when I take of my HA's my lipreading success rate is 0% so I guess my journey will be a different one. Really feeling optimistic now, especially for my mum. I will keep you posted more and more. Thanks!

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@Evren - age isn't a thing to be nervous about.  I was 60 when I received my implants last year and I'm continually amazed at what I'm hearing now!  My best to you and to your mother!

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Hey again I got some updates,

My audi told me that we will get Synchrony ST model with standart arrays. I was shocked as I was expecting flex. Then, she had a call with my doctor and they decided on Flex28! I don't know how to feel now. I was told that the standart model is lenghty with 31,5mm and the flex is 28 and atravmatic. I'm very confused tbh. Do you think 3,5mm difference worth the hassle?

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@Evren

I have medium (24 mm) and flex 28 (28 mm).  Both work great.  It’s important that the electrode array matches each individual cochlea.

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@Mary Beth

Your cochleas have different sizes or that was a personal choice to go with 24mm in one? I know flex is slightly thinner for residual hearing but I wonder if that make  big difference with bass tones. 

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@Evren

I let the surgeons select the most appropriate electrode array for each cochlea.  They used cochlea size, ossification levels, etc.

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Update!

The operation (on August 21) went fine (both me and mother)

No dizziness, mild pain night after the surgery which is gone now. My implanted ear developed loud tinnitus about 30 hours after the op. I never had serious tinnitus problems as I always wear my HA's since I started using them 17 years ago. 2nd night I slept well but tinnitus is still there. Can't really say anything about residual hearing at the moment, but when I clear my throat I might hearing things. For now, the ear feels like it's filled with liquid. This is the story so far :)

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Thanks for the update @Evren!  When are your activation dates?  Rondo 2 for you and your mother?  Exciting times ahead.

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Hi @Mary Beth yes, Rondo 2 for both of us. Still negotiating activation date, shouldn't take long. I have newly developed 24h tinnitus, something I was not expecting at all. hope it goes away after I put on the processor.

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@Evren

post CI surgery tinnitus is quite common.  It is also common to experience strange tinnitus in the beginning when you remove your processors for the night.

My tinnitus is so much better with CIs.

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@Mary Beth did you have tinnitus before the surgery?  I've had it since, oh, about 1973, and it didn't change in either nature or volume after my implantations.  I wish it had, but I'm so used to it by now it's not a big deal.  I don't notice it much when I'm talking to people but it's always there, just more noticeable when there's no sound coming to my auditory nerve via the CIs.

@Evren - sounds like you and your mother are doing great!  I'm glad to hear it, we'll be interested to hear about your activations!

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@Mary Featherston

Yup.  Tinnitus has been my companion since my early teens.  It went crazy after activation when I removed the processor before bed.  That all resolved itself.

I don’t notice my tinnitus at all while my processors are on.  At night, I notice it but it is much, much quieter than before CIs.

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@Mary Beth Actually I do have tinnitus after taking off my HA's by night, but it sounds like very low buzzing of an air conditioner but post-op one is infinite ringing in my ear. It's slightly decreased now and it doesn't affect my sleeping quality, so I'm OK with that.

@Mary Featherston thank you, yes we both doing fine. better than expected! can't really wait for the activation :)

 

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I also found that my tinnitus, which was very loud, is not at all noticeable when wearing my processor. I can still sense it when I go to bed but it's fading, I forget it's there some nights. 

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Interesting tip, although I would not recommend as I'm not sure if it's safe in any way but when I put my hearing aid on my implanted ear and it immediately cut down tinnitus.(4th day post surgery) I wore it for a min, took it off and the ringing improved for a while. I can hear the activation beeps of my HA, the feedback and some of the high frequency sounds. I can't hear any low freq with or without HA, despite the Flex28. Feels weird as I thought it was more likely to keep my low freq.

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@Evren

I am glad your recovery from surgery is going so well.  The wait between surgery and activation can seem really long!

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