Making final decision to get cochlear implant for single sided deafness

[Lynn Agnes]

I had sudden onset of single sided deafness three and a half years ago in my left ear.  It was diagnosed as sensorineuro hearing loss. My right ear has normal hearing but has had one recent surgery to remove inflammatory tissue from my middle ear.  Since the onset of hearing loss, I have had great difficulty localizing sound and also hearing in noisy environments.  I am hoping that the cochlear implant will help me with these.  Localizing sound is a safety issue for me as I do a lot of walking and bicycling in the community.  I would love to hear from others with single sided deafness with normal hearing in one ear.  I am wondering if anyone in my situation experienced music differently after the CI was in place.  My insurance recently approved the cochlear implant and so I need to make a final decision in the next few weeks.  One of my biggest fears is not being able to appreciate music as well after the surgery.

[Mary Beth]

@Lynn Agnes

Welcone to Hear Peers!

Our friend @VeroNika has single sided deafness and is a superb pianist.  

Wishing you the very best!

[VeroNika]

17 hours ago, Lynn Agnes said:

I had sudden onset of single sided deafness three and a half years ago in my left ear.  It was diagnosed as sensorineuro hearing loss. My right ear has normal hearing but has had one recent surgery to remove inflammatory tissue from my middle ear.  Since the onset of hearing loss, I have had great difficulty localizing sound and also hearing in noisy environments.  I am hoping that the cochlear implant will help me with these.  Localizing sound is a safety issue for me as I do a lot of walking and bicycling in the community.  I would love to hear from others with single sided deafness with normal hearing in one ear.  I am wondering if anyone in my situation experienced music differently after the CI was in place.  My insurance recently approved the cochlear implant and so I need to make a final decision in the next few weeks.  One of my biggest fears is not being able to appreciate music as well after the surgery.

Hi there @Lynn Agnes and welcome.to hear peers! 🤗

Like @Mary Beth mentioned, I am also deaf one one ear - my left, just like you - and hearing on my right ear. Just to give you a little background as to my experience with ssd and the ci: I was born with regular hearing, turned deaf due to an unknown virus at three and got my implant aged 21- rather late, it was believed that the hearing nerve is damaged so I had no hearing aids, at 20 doctors found out my auditory nerve actually is working so - yaaaay - I could get a ci and have been a very happy user since 2011! 

You mentioned sound localization:

- without the ci: only possible through some compensating strategies which help in known indoor surroundings, outdoors not possible (no idea where a car is coming from if I don't see it)

- with the ci: I can - mostly - tell were noises (cars, music,...) come from - hurrray! 😃

In regards to music:

I started playing instruments and singing without the ci and can also enjoy  and appreciate music without the ci.but - for me - it was like a whole new music-world opened when I got the CI - I will never ever forget the first time I sang in the choir with the ci, playing the piano to me sounds a lot better with the CI and also I appreciate live concerts more with the ci.at the beginning of my ci hearing journey we had to fiddle with different settings but the Medel technicians were and are awesome about it and we found great settings - and when at concerts I use the fine tuner (a remote for different settings of your ci) to adjust to the type of music that I am listening too. also oit of curiosity at concerts I even tried turning the ci off/on again and with the ci to me music is a lot more enjoyable! 😊 So personally: yes, I do experience music differently, that is: better.

If there's anything else you'd like to know like strategies for noisy environments or anything else that comes to your mind: just let me know - also I wish you all the best for your decision! 😊

 

[Mary Beth]

Your story is amazing @VeroNika!  Thank you for sharing.  I’m so happy your CI has worked so well for you even after all those years of deafness!

My right ear was completely deaf and unaided for 24 years.  I am so amazed at how it hears with a CI.

[Lori Martin]

Hi I am new here

I lost my right hearing completely about a year ago.

I have meant with a Cochlear Implant Manager whom is very nice out of Boston,  we went over different devices to best fit myself. (I choice MED EL) I am also currently working witth a Psychiatrists and med Psychiatrist in Boston to help with anxiety and depression. For they say I am not Mind, Body, Heatly at this time, but getting closer to the surgery date. I have also started a Journal about (Self) which has helped me along the way.

My question would be to you what was the process?

What  was the journey?

I am mosrt certiantly nervous with all.

Thank you for reading

[Mary Beth]

@Lori Martin

Hello and welcome to HearPeers.

Everyone’s journey is unique.  Basically we need to help our brains interpret the CI input.  As a single sided deaf person, your acoustic ear will be a great training buddy to your CI ear.

I will tag @VeroNika who is a dear friend with single sided deafness and a CI.

 

Which CI center are you using?  I am in northern NY and go to NYEE in NYC.

 

[Lori Martin]

Hi Mary Beth

My choice of Cochlear Implant Is MED EL. I am having my surgery in the State of Boston. Alos in place is a  wonderful team aboard.

[Mary Beth]

I am glad you have a great CI team @Lori Martin!  Wishing you the best!

[Lynn Agnes]

Thanks so much MaryBeth and VeroNika for your feedback.  I find this forum very helpful for the questions I've had!  @Lori Martin:  My process for deciding to get this surgery was that I wanted to feel like I was doing everything I could for my hearing.  It was a great loss to lose my hearing in that ear.  I want to have the best quality of life I can with the time I have left on this earth and improved hearing would be part of this.  Also if I can insure myself against total deafness, should anything happen to my right ear, that is an added benefit.  Best wishes to you!

[Lori Martin]

Hi Lynn Agnes

I was introduced to this forum by my Cochlear Implant Manager. I do agree with you on the loss of hearing, (Myseslf just Dumbfounded) this took a toll on myself. Not knowing where your sound is coming from makes this a challenge, and most certianly has it's fair of struggles. I'm also battling a balance disorder and using my eyes as my (conpensatiion.) I have read so much material for the Cochlear Implant. The tears that I carry within just to know that iIhave a fantastic team working with myself. I realize this is a process and everyone has thier own journey to tell.

Thank you

Lori

[Lori Martin]

Hi Lynn Agnes

I am currently in psychiatry and med psychiatry to perpare me for this, I do as well have two more appointments with them to see if I'm Mind, Body, Heathly ready. In the beginning stage my team mentioned that I wasn't ready. I am doing better since they had helped me with the depression and anxiety of this. They have seen a great imnprovemnent within mysself. Its been allot of hard work.

Thank you

Lori

[Mary Beth]

Wishing you the best @Lori Martin!

[VeroNika]

Like @Mary Beth I want to wish you, @Lynn Agnes and @Lori Martin all the best!! : )

[Lori Martin]

Hi

Thank you!

[Monte]

Hi Lynn, I have single sided complete deafness and just got my implant on February 4th. They activated on February 21st and I am now about 1 month into my new hearing journey.

Prior to my CI in my right ear, I couldn't listen to music anymore due to extensive distortion in my "good" (left) ear. I am approved for bilateral implants, but haven't made a decision yet if I am going to get the other side done. My left ear started to improve, so I am going through the excitement of learning to hear again with my right ear. Everything is so much better already, I'm not sure if I want to risk giving up what residual hearing I have remaining in my left ear. I had not heard a sound out of that ear for over 18 years, so the improvement is really remarkable and has been life changing so far.

On the day of my activation, I went home and played every note on the piano. It sounded very poor, and I only heard 12 distinct notes from one end of the piano to the other. Not doe, ray, me, fa, so...rather a distorted doe, doe, doe, doe, doe, doe, doe, doe, ray, ray, ray, ray, ray, ray.... It was as if each pair of electrodes could only "hear" one note for a range of notes. And it sounded terrible. Now, a month later, I can hear all of the notes differently from one another. Last week, I was on a road trip and was listing to an oldies station using only my CI. I put an ear plug in my left ear to force myself to learn to hear through my CI. Anyway, I started listening to bye bye miss American pie, and it sounded pretty good. I was so happy to hear the melody and understand all of the words. Picture some middle aged dude singing at the top of his lungs as he drives down the highway! haha.

Anyway, I can tell my CI is getting better day by day. My Audi says my results are remarkable and that although they do the fewest Medel devices of all of their implants, they think the best results initially have come from Medel. I know I am thrilled anyway.

I'm not sure how long it is going to take for me to really enjoy the finer nuances of music again, but I am encouraged with my early results. Good luck on your surgery and let me know how it goes!

Oh yeah, the other day a bird was singing on a lamp post behind me. I had both my CI on and my hearing aid turned on in my other ear. When I heard the bird, I felt like I knew the sound was behind me and I turned and looked. There she was, serenading me!! Not sure if this was a fluke or not, but something told me that she was behind me. It was a good day.

Monte

[Mary Featherston]

@Monte that's great progress for just a month into your rehab!  And I'm amazed - and happy for you - that your left ear is doing better too.

[Mary Beth]

Excellent WOW moments @Monte!

[pdk]

Go for it.

I have cochlear cli and switched on a month ago. 

I have hearing with an aid in my left ear. 

I have listened to 2 audio books. My guitar sounds odd but I could hear a semitone the same day as switch on

After my second mapping I could listen to Beethoven's 5th piano concerto on a minimike, full orchestra sounds squelchy, but piano good. 

A lot of music is far from perfect but add the left ear and that helps tremendously. 

Peter  

 

[Mary Beth]

@MED-EL Moderator

SSD folder please

thanks

[Pinky]

Hi,

My friend is waiting for CI surgery, I am interested in your experiences.
One of his ears is good, the other is deaf since January.
He would get Cochlear now or Medel's new model in February.
Which is better and why?
Is it bad to wait until February?
He is a music producer so music is important for CI's choice.

Is there someone with 1 CI and 1 good ear?

Thanks for your help!

[Pinky]

Hi,

My friend is waiting for CI surgery, I am interested in your experiences.
One of his ears is good, the other is deaf since January.
He would get Cochlear now or Medel's new model in February.
Which is better and why?
Is it bad to wait until February?
He is a music producer so music is important for CI's choice.

Is there someone with 1 CI and 1 good ear?

Thanks for your help!

[Mary Beth]

Hi @Pinky

Great to see you here!

@VeroNika is single sided deaf with a Med-El CI and a pianist.

[Mary Beth]

@Pinky

https://blog.medel.com/tag/veronika/

And she participated in the international music festival called Beats of Cochlea

https://blog.medel.com/talented-deaf-musicians-from-around-the-world-beats-of-cochlea-2017/

[Mary Beth]

@Pinky

Here is a link to my music journey with bilateral Med-El CIs.  In fact, tonight we are going to a Broadway musical!  I LOVE music with my CIs!

 

https://blog.medel.com/3-steps-to-rediscovering-music-with-a-cochlear-implant/

[Mary Beth]

@Pinky

Johanna is single sided deaf with a Med-El CI.  She works for Med-El and specializes in music.

https://blog.medel.com/a-singer-with-single-sided-deafness-losing-music/