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Hi from Pacific Northwest


Cara Mia
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Hi Everyone,

 

I have a severe to profound sensorineural progressive hearing loss on my left side. My right side didn't hear at all for about 10 years. Not sure about the reason. More likely it is a result of meningitis I had at the age of 5. But I noticed the first signs of hearing loss when I was 18 (couldn't hear whisper from 6 meters behind me with my bad ear).

 

Everything was pretty manageable for me until 5 years ago. At the age of 47 I have started using my hearing aid for my better side as my right side didn't work at all by that time (which didn't bother me much). Despite HA I progressed struggling to speak over the phone and understand people without lip reading. Last fall I was approved for bilateral CI but, at the beginning, I decided to go with my deaf (right) ear using the residual hearing with HA from my left side as long as possible.

 

Now I am looking forward (with some degree of impatience :) towards my surgery which was scheduled on February 10th with the activation setup one week later. I have chosen the Sonnet CI. Would like to try Rondo too, but unfortunately, "2 ways to hear" promotion has not extended for this year. Anyway, reading your forum and other sources I am sure I will be happy with my Sonnet. Having no any tinnitus, headache issue, or balance problems and considering myself as a flexible person, I am pretty sure that my brain is flexible enough to adapt to a new way of sound processing quickly. Even if I am unable to get back some of my hearing ability? I will be glad to get something extra to what I have at the present moment.

 

I like my surgeon and audi.... I'd even say I trust them.... so, with a little bit of luck I should be fine soon.

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Hi Cara,

Welcome. I also went with my worse ear first. It hadn't heard in 24 years. It did great with auditory training and by 3 months was able to hear on the phone etc. My previously "dead ear" did so well that I had my other ear implanted in October (8 months later). That CI is also doing great. It's been life changing.

I hope your hearing journey is awesome as well. Feel free to ask as many questions as you want. There are lots of helpful people here.

Mary Beth

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Hello Cara,

Welcome to the Hearpeers.

Glad to read your story - sometimes hearing loss come without any reasonable cause.

Regarding your hopes - there is a good chance to regain your hearing capabilities due to the ever-changing process of the brain neuroplasticity. As well when the brain is not stimulated, neural pathways weakens; similarly, when brain started to gain new inputs - it starts to "rewire" or adapt to new posibilities of hearing. Results are very good now. ;)

Just: practice, persevere ... Hard but rewarding process...:)

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Mary Beth and Ivana thanks for your warm greetings. I read this forum for a while and did find a lot of useful information. So, thanks to all of you, hear peers.

I definitely will ask questions to get the answers from the first hands.

I am going to spend a lot of my time on this forum before my activation to get more information on auditory training. And I am sure I will have practical questions about that.

 

I also fascinated with our brain plasticity and adaptability. And I believe our brain can do even more than we expect from it. I promised to be patient, perseverant, and a good scholar doing my homework each day :)  Especially I am waiting when I can use my CI rehabilitation as an excuse to watch TV and listening to audio books endlessly :)

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Welcome Cara! Nice to meet you. With regards to rehab as we call it we have a forum just for this. Remember it's a marathon not a sprint and we all need to take breaks during rehab as not to overstimulate ourselves. But of course this point where we need to take a break is very individual. It's a wild ride though!! I have no regrets for doing this I can hear better than before!!! Good luck and ask many questions!! I look forward to your input on the forums as well. I have learned so much here and made some new friends!!

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Hi Cara and welcome to Hearpeers. We are here to support you in this awesome journey. Ask any questions, one or all of us will try to answer them. The 3 Ps are our mantra - Practice, Perseverance and Patience. We look forward to hearing from you.

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Thank you Kara. I will try to be reasonable and keep the balance during my rehab between the training and time off. I actually believe that break time during training is also the part of the work as during that time our brain not actually just resting - during that time it processes a new info in some special way.

I read your story here and I wish you to resolve all your issue with healing after surgery and feel absolutely well soon.

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Hi Sandy,

 

Thank you for welcoming me. I got this forum mantra. Will use this words in my audio training. I am sure that the sounds P, T, C, and S will need my special attention at the beginning :)

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Thanks Cara. We will get there. It's a minor setback. That's all. Slow and steady.

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Thank you Kara. I will try to be reasonable and keep the balance during my rehab between the training and time off. I actually believe that break time during training is also the part of the work as during that time our brain not actually just resting - during that time it processes a new info in some special way.

I read your story here and I wish you to resolve all your issue with healing after surgery and feel absolutely well soon.

Of course - good balance is the key of progression. The brain will ask on its own how much and what it needs - just remember to listen it ;) and stay interested :)

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Hi Cara,

Welcome to Hearpeers!

I had my CI surgery on 12/22; activated on 1/14/16. I was a little concerned about getting the CI surgery but I am glad I did. Training is a marathon like Kara said. I am hearing a little better than I did last week, so I am excited.

Good luck on your journey. This is a great forum. These members helped me tremendously and we will do the same for you!

Elaine

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Glad you found us Cara

Welcome to hear peers. I am bilateral and will be coming up on 5 years this April. I went with my "better" ear first. I am bilateral sequential which means I had one surgery then had to wait a little while until my second. It was a hospital rule.

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Hi Elaine and Adam,

 

I also glad I found this forum while was looking for some more assurance to support my decision to go with Med El. My hospital/insurance allows to do bilateral implantation but I would like to keep my residual hearing as long as it has some sense. I still have some speech recognition when I can see people, know the context of conversation, and my vis-à-vis has the right voice for me :)

To be honest, I need more time to get comfortable with the idea to be in complete silence when without CI. Logically I understand that it is not a big deal, but psychologically I still feel uncomfortable to imagine that.

 

Thanks everybody for your support!

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Cara

For me it was a no brainer. Any residual hearing did not do me any good anyway. The good news is that the electrodes Medel uses are very flexible and allow for more preservation of any residual hearing that might be be left. I hop this eases your mind a bit. It is a big decision that only you can make. Whatever you decide is the right way to go. I am bilateral and haven't regretted it for one second.

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I was implanted almosmt three months ago. I had a hearing test at one month post activation and I could hear in my implanted ear!! I was shocked to hear without my processor!! So I retained my residual. Hearing which my Audi explain as I would hear a jet engine if I stood beside it. But the benefit of the processor/implant far out ways the residual hearing.

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Hi Elaine and Adam,

I also glad I found this forum while was looking for some more assurance to support my decision to go with Med El. My hospital/insurance allows to do bilateral implantation but I would like to keep my residual hearing as long as it has some sense. I still have some speech recognition when I can see people, know the context of conversation, and my vis-à-vis has the right voice for me :)

To be honest, I need more time to get comfortable with the idea to be in complete silence when without CI. Logically I understand that it is not a big deal, but psychologically I still feel uncomfortable to imagine that.

Thanks everybody for your support!

Cara,

as Adam and Kara told already, not every CI implantation ruin residual hearing cells: except atraumatic electrode there are technics of atraumatic insertion. On the other side, there are lots of studies which concluded that better rehabilitation can be expected if stimulation starts earlier. That's why even indications for the implantation today include residual hearing. :)

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Cara,

I truly understand your concern regarding keeping the residual hearing you have and not wanting the possibility of losing those hair cells with the surgery. I felt the same way you do now. I was distraught just thinking about that. However, much to my surprise I did not lose my low frequencies hair cells! About a week after the surgery, I heard the iPhone alerts going off on my phone WITHOUT the hearing aid in the other ear; I heard the phone ringing; the doorbell, etc. I have to admit, my Surgeon told me that there was a very good chance that They would not be damaged but I had reservations until I actually heard those iPhone alerts.

Take your time and research, research, ask and research.

Hope this helps

Elaine

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Cara,

I did not have enough residual hearing to worry about saving for my second implant and absolutely no residual hearing for my first implant. I did lose the little remaining hearing I had in my left ear when it was implanted. I do not hear anything when the processors are off. However it's not a quiet time as when the processors are off my tinnitus comes back or is noticeable (quieter than before surgery but still there when the processors are off). It takes a little getting used to- not hearing anything at all when the processors are off but it is a small price to pay for everything the CIs have given me.

You will know when you are ready. Wait until you are ready and then it will be fine.

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Hi Cara,

Welcome from the southern hemisphere contingent!

As all the CI questions have been asked I'll ask where in the magnificent PNW are you? I rode my motorbike through there 14 months ago and absolutely loved it.

Good luck for February,

Matt

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Hi Matt the Globetrotter (if I understood it right from what I read in your posts on this forum). I live in Snoqualmie - 25 minutes from Seattle. Perhaps you have seen our Snoqualmie falls. I like this place crazily - mountains, a lot of lakes and rivers, evergreen forests with a lot of hiking trails...

 

Adam, just like you said, when my residual hearing does no any goods to me, I will no doubts to go bilateral. Sure it will happen pretty soon considering how much my hearing loss progressed during the last year. Med El flexible atraumatic electrode was one of the reason I decided to go with this brand. But I also understand this is no guarantee to relay on it. I would think about myself as a very lucky person if I could preserve some of my residual hearing after surgery like it happened to Kara and Elaine. But I need to be ready to stay just with myself for some part of the day  and be fine with it like you and Mary Beth.

 

Need to revise my comfort zone to advance in my life adventure :)

 

But it is important for me that I can share my uncertainty here and be heard. Thank you guys!

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We'll it is all in your perspective. That is key. If your an optimist or a pessimist. ( I see optimism in you with hesitation.) I look at it like if this is going to help in going to dive in and go for the ride!! I totally understand people's hesitation but once I make up my mind I go for it!! There is always a complication in anything for me I am a special case. So I look at things from the positive side. That is what keeps me going.

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Bottom line, you have to be 100% comfortable with your decision to move forward. If not, I would wait. Having the confidence and calmness that you made the right decision will be a big factor in how you handle things after the surgery.

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Yes Cara - there is no promise but there is at least hope...;)

But of course, no one is trying to convince you until you don't decide it.

I know it from my personal story - I was not prepare to change my hearimg aid which was my best friend simce my childhood. I used to even sleep with it!

But, changes in life inevitably change your personal horizon so a shift from analog to a digital technology was absolutly unbearable to me. I couldn't adapt myeslf since my kind of hearing loss is not so often so, in the beginning - we were completely forgotten.

But... This is history - adaptations are here...

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Bottom line, you have to be 100% comfortable with your decision to move forward. If not, I would wait. Having the confidence and calmness that you made the right decision will be a big factor in how you handle things after the surgery.

More than million % - right :D

This definitely help in coping with various challenges.

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