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New! Nervous CI candidate


Leanne

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Hello! I am very excited to find this forum and look forward to communicating with everyone!

I experienced SSD (left ear) at the age of 37 (5 years ago) after surgical failure. I had a successful tympanoplasty (should have stopped there, a decision I will regret forever) followed by a failed stapedectomy. Despite calling my surgeon’s office several times to convey my fear something was wrong, they assured me everything I was experiencing was normal. 4 weeks later, at post op, my surgeon exclaims, “Something’s wrong!” You can imagine my dismay at being right (the one time I did not want to be right). One emergency revision stapedectomy later, which failed, I was now completely deaf in the left ear. My surgeon stated that resulting scar tissue from the first surgery was unrepairable. I was devastated. 
 

Fast forward 3 years, I finally felt brave enough to go through Baha implant surgery (different surgeon!). This was successful and has been a tremendous help to me, especially during meetings but not so much in louder social settings.

My good ear has now begun to experience significant hearing loss due to a retracted eardrum. When asking about solutions, my local surgeon declined to explore options due to not wanting to operate on my only hearing ear. I traveled to Shands in Gainesville, FL for a second opinion. The experienced surgeon there said he would absolutely do a tympanoplasty to correct the eardrum issue in my right ear and restore the hearing loss I was experiencing. Then he threw me a curveball; urging me to consider a cochlear implant for my left ear. I did not expect an option for my left ear so I’m trying to learn as much as I can. 

I am quite nervous to consider surgeries (both the potential CI on the left and the tympanoplasty on the right). Luckily, I have lived through one successful tympanoplasty but there is still some risk so that terrifies me. For the left ear, I do have some concerns:

Is anyone familiar with the interference of scar tissue with a CI? I wonder how much of an issue that might be.

Secondly, music is a part of my soul and extremely important to my psychological well-being. I realize that listening to music is very different with a CI. If music will be drastically impaired, I might consider sticking with my Baha, which would have to be removed if I chose the the CI.

Thanks for reading this long post! 5 years of hearing impairment and the first forum I have joined - so excited to connect with others. ☺️

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@Leanne

Welcome to HearPeers!

Although for different reasons, I too experienced failed stapendectomy surgeries which ultimately resulted in a dead ear for 24 years before it was implanted with a CI.  It was a complicated ear to implant so I chose Med-El for their extensive electrode array options for my surgeon.  I am happy to report that it is an amazing CI ear.  I have shared my CI journey online, including my CI & music journey.   I will tag you in that link.  Wishing you the very best.

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@Mary BethThank you so much! I have noticed your helpful posts and will certainly delve into those as well as the link. I appreciate it!

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I have 1 CI and 1 regular hearing ear. I hear music beautifully and fully with that combination. This is very important to me as I perform as a singer in 2 choirs.

With the CI alone (blocking my other ear) it sounds a little strange still but I'm only 2 years in and others like @Mary Beth report great music listening with CIs alone given sufficient time and practice. 

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2 hours ago, Kylie said:

I have 1 CI and 1 regular hearing ear. I hear music beautifully and fully with that combination. This is very important to me as I perform as a singer in 2 choirs.

With the CI alone (blocking my other ear) it sounds a little strange still but I'm only 2 years in and others like @Mary Beth report great music listening with CIs alone given sufficient time and practice. 

Thanks so much for the feedback, Kylie! This is super helpful to know. Music is so important to me for a variety of reasons including stress relief and emotional well-being. It frightened me when I heard examples online of what music could sound like with a CI. I wondered if my hearing ear would be able to control the sound of the music so it would not sound warped. Thanks again!

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@Leanne

Those CI simulations online for speech and music are what made me delay getting a CI.  I am happy to report that my CIs do not sound anything like those simulations.  These CIs are WAY better!  

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17 minutes ago, Mary Beth said:

@Leanne

Those CI simulations online for speech and music are what made me delay getting a CI.  I am happy to report that my CIs do not sound anything like those simulations.  These CIs are WAY better!  

That is a huge relief! When I heard the simulations, I immediately felt disappointed. They sounded terrible. I am fully aware of the work, practice, and rehab required but when I heard that, I definitely felt like delaying. 

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