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SSD - possible CI


MaryGP
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Hello all,

I just lost my hearing in one ear, suddenly 3 months ago. I went to bed hearing, and I awakened profoundly deaf in my left ear.  I have been fitted with a CROS hearing aid, but am interested in CI.  Especially, now that it is approved by FDA and I may be able to get insurance to pay.  I am a positive person (well, lets say that I am grossly optimistic) so at first, I thought, this isn't that big of a deal.  I haven't loss my independence.  I am not stuck in a wheel chair on unable to drive (THank God!).  But, as time progresses I am really effected by the back ground noise and its invasion on conversations, my inability to pick up words in multiperson conversations (did people always talk over eachother like that?) and the exhaustion at the end of the day after working so hard to hear every one at work.  You see, I am a manager in a chemical plant laboratory.  The ventilation is necessary and very loud.  I am constantly straining just to hear my employees.  Oh, and then there is music.  Which is now just flat and noisy.

My audiologist thinks I am a good candidate for CI because I just lost my hearing.  I would love to write/speak with someone who has been through the same thing.  Anyone out there?

Peace,

Mary

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@MaryGP

Welcome to HearPeers!  I see you are in the US.  Med-El USA has regional consumer engagement managers who can help connect you to people and provide info too. Just contact Med-El to be put in touch with the CEM for your region.

 

I am in New York.

I had unilateral complete deafness following a surgery for meniere’s and spent 24 years listening out of just my left ear with a HA. I spent time with a BICROS system as well.  Now I am bilaterally implanted and hearing with 2 ears is so much easier and better than hearing with one ear.

 

Feel free to ask questions. Wishing you the best!

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  • 4 weeks later...

@Mary Beth

Thanks for replying back.  I will take your advice on emailing medel.  The more research I have done on this, the more concerned I am.  What I have read is that the implant is most effective at reducing tinnitis (which I have very little of) and least effective in hearing conversation over loud background noise - which is my biggest issue due to my job.  Oh, and sound localization.  That is very frustrating - especially when auditing equipment use....  But, I have an appointment with a surgeon on 10/3 for an evaluation.  So, I will ask her a lot of questions also.

Sorry I didn't respond back earlier.  I have spent the past few weeks trying to make the CROS hearing aid work and have been utterly exhausted.  (I am annoying my self right now b/c that sounded so whiny).  Anyway, it actually reduces my ability to hear my employees in the lab (think loud ventilation noise being piped directly into your good ear).  But, I am going to keep at it for at least another 2 weeks.  One doesn't get a hole drilled in one's head, without an honest try of the hearing aids.

How do you do with conversation competing with loud back ground noises.  My job has background noise a little less loud than a crowded bar.  But similar.  Are you able to make out conversation?  What about tonal changes in conversation?  Are you able to accurately read other's emotions?  I have always been very empathetic.  That is not a sense I would be willing to loose for better hearing.

Thanks for your time - and I hope you have a nice holiday tomorrow.

Mary

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@MaryGP

Hearing with only one ear after being used to hearing with two ears is quite a difference.  Our brains use loudness and timing differences between ears to identify the location of sound.  With only one ear receiving the input, that info is not there.  A CROS aid is sending sound to the other ear so still one ear is processing all of the sound so again the differences in loudness and timing are not there.  I had no ability to locate sounds when my right ear lost all hearing.  For 24 years I had no ability to tell which direction the ambulance was approaching from.  Frustrating indeed.  I can relate.

 

When our brains get auditory input from two separate pathways it does amazing things.  It makes everything a bit louder.  It recognizes the direction of sound.  It makes hearing in difficult situations easier. And the improvement in music is phenomenal.

 

There is no guarantee of outcomes going into CI surgery.  I approached it this way... except for the surgical risks, I had no hearing to lose since my right ear was not processing any sound at all.  I wanted to give it a try.  I was committed to aural rehab.  I practiced for several hours every day.  Every single day.  It was exciting for me because I could tell the improvements my previously dead ear was making.  It fueled my excitement and made training fun.

We will never know how great our hearing will be with our CI unless we commit to the journey and train our brains to use the auditory input.  I am 4.5 years out and bilateral CI now.  I just attended a family reunion with over 40 loud, excited and loving people.  I heard great.  Conversed with everyone for hours.

I can hear the tonal changes in people’s voices.  I hear if they have a cold, are feeling excited...sad....afraid, if they are playing with their voice to imitate a different accent, etc.

At first all I heard was static and beeps. The journey is life changing.  CI tech and the power of our brains’ neuroplasticity amazes me every single day.

If you decide to go on your own CI journey, I wish you the very best.  HearPeers will be here to help and join in the celebration of your WOW moments.

I’ll post a link to a video Med-El made of my CI experience.  If you have any questions, feel free to ask.

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@Mary Beth!!!  What an amazing video!  Thank you for making and sharing it.  It was very encouraging, and I am so happy for you that you have had such a great result.  It is also great to hear that you don't hear robots, but people.  And, that you can hear emotional changes in voices, and music :).  

So a more practical question.  How did you manage all the rehab and work?  I am so tired after straining to hear all day, the thought of coming home and doing rehab for 2 hours sounds like a significant challenge of endurance.  There is no way I would get the surgery without committing complete to rehab.  I'm an engineer, and we don't do things without thinking through it and planning for all the ramifications.  So, did you take time off work?  Did you just power through it?  Did you have a rehab plan going in?  if so, can you share?  Sorry, I may be "geeking out" a bit now...  Next thing you know, I will build a rehab spreadsheet....

It sounds like your spouse was really helpful.  I live alone, but i think I could manage the training using videos and Angel sound.  I am currently downloading Angel Sound so that I may get a preview of what rehab looks like.

Thanks again.

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@MaryGP

I’m glad you liked the video.  My CIs have been life changing.  I am so thankful to those who came before me and participated in research etc so that the CI tech advanced to this level.  I am trying my best to pay it forward by helping others.

Absolute total exhaustion defined the many months preceding my first CI.  And total frustration.  I came home from work and turned off my barely functioning left HA (my right side was completely deaf by then) and spent the evenings reading and trying to recover from the exhausting day.  

Then my first CI was activated.  I only heard static and beeps at first but I was soooo encouraged.  I wore my CI from wake up to bedtime.  I trained in the morning before work (I woke up earlier to do this.).  I trained during my lunch break.  I trained when I returned home from work.  I had a terrific rehab plan and I am happy to share it with you.  I posted the most helpful activities here already so I will tag you but if you want more detailed info, I am happy to answer questions.

Aural rehab was motivating.  Seeing my CI ear advanced and do things it could not do the day before was incredibly motivating.

Do you have an iPad?  I did apps and online training via iPad and in person training with my spouse.

You are in North Carolina right?  Are you going to UNC?  They did studies on single sided deaf people with CIs.

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@Mary Beth

WOW - Gosh, why can't these things happen when we are in our 20's and energetic?.  Pushing 50 is not the time for this type of endurance challenge (whats the emoji for nervous laugh?)😁

Yes, please tag me on your plan.  I don't want to re-invent the wheel.  I don't currently have an ipad, but if that is better for training than a PC, I am not opposed to buying one.  If I decide to do this, I will completely commit and not spare anything that will help success.

I am in Greensboro NC.  Which is closer to Wake Forest Baptist Hospital (research and teaching).  I am currently going there but not opposed to changing locations to UNC - I am going to have my evaluation with my Dr in October.  She seems quite bright but is young.  However, i don't have the complications that you did.  My MRI test showed an "unremarkable cerebellum" which my family and colleagues (especially employees)  have enjoyed immensely.  My CT scan was also normal.

One of my colleagues at work, his wife also has had meniere's since she was relatively young.   It is my understanding that is quite rare.  Anyway, she goes to UNC, so I could ask them for a Dr suggestion.  She still uses a BAHA - and has not done a CI.

BTW - I have emailed medel.  Its a holiday so I don't expect to hear back from them immediately.

You are loads of help, I can't tell you how much I appreciate it!

 

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I have a recent CI (4 months since activation) after suffering sudden hearing loss last year, with an inner ear infection. I'm 39 years old. I went straight to CI and didn't do the other surgical options because they seemed inferior for the overall hearing experience. So while I can't compare them I do think I'm getting a realistic type of sound (the quality of which is improving daily). My brain is learning to filter environmental sound, music is getting better, multiple conversations are possible etc. 

I choose to do my rehab after dinner when the kids are in bed, or occasionally while they are at school if I have some free time on a non-work day.  I am not as committed as @Mary Beth to do multiple sessions per day! But I'm getting fantastic results with 20mins per day. I predominantly use the angel sounds software on my Surface, which works great. Also I've started listening to documentaries and TED talks with and without captions. I don't have an iPad either but there's bunches of good stuff available still. If you go down this path there are great recommendations on this forum on the rehab pages. Whatever devices you have, there will be programs you can use.

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Kylie,

Thanks for the information.  It sounds like CI is working very well for you!  Such good news for you and your family.  

 I have been a little overwhelmed at the level of rehab necessary to make this successful.  It is encouraging that you are getting results with only 20 minutes a day.  I am so tired at the end of the work day (mentally tired - from work+straining to hear), that I am concerned about my ability to be successful.  I don't know how you do it with kids!!!! :).  I can definitely commit to 20 minutes.

Hope you have a great week.  Thanks again!

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@MaryGP  usually, the more rehab you do, the better you'll hear.  As Kylie mentioned, some people do loads of structured rehab - like Mary Beth.  But keep in mind that every conversation you have, every meeting you go to, every commute spent listening to music - those are all helpful too.  Just not structured and without a specific goal.

 

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@MaryGP

@Kylie and @Mary Featherston have great points.  Everyone approaches training our brains differently.  You will figure out what works best for you and fits best in your schedule.  Aural rehab helps our brains learn how to use the new auditory input.  As we improve in listening with our CIs, we spend much less effort throughout the day trying to hear. 

I’m sorry if my fondness for aural rehab made you anxious.

CIs have changed my life and I am thankful every single day when I put on my processors.

Wishing you the best.

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