I had SSNHL 2-1/2 yrs ago. Need help please

[Farshad]

Hello, thank you so much for reading.  The last 2-1/2 years has been so life changing for me, it is hard to know where to begin.  I have many questions, so I'll try to be brief with the history:

2-1/2 yrs ago, I felt totally fine, then all of a sudden had vertigo.  First time ever.  It stopped after 30 seconds, then again, then stopped, then again and didn’t stop.  I am a physician, and I was in the hospital.  I hobbled to the ER, CT and MRI were negative for a stroke, everything was negative.  However I also noticed my right ear was muffled.  They said I had BPPV (wrong), and sent me home.  My ENT friend saw me the next day and confirmed SSNHL.  He started me on Prednisone.  Only thing I did wrong was to take 20 mg three times a day, rather than 60 mg once daily, but of course they say it wouldn’t have made a difference.  I had 5 or 6 injections in the ear with steroids, and I did 20 sessions of Hyperbaric Oxygen Therapy.  Nonetheless, the hearing didn’t improve.  I lost about 80-90% of the hearing in my right ear.  Whatever I still hear sounds distorted and tension producing.  And the night it all happened, I developed a white noise in the same ear.  I have had it every since, it is a shrill background white noise, piercing.  And for some reason, it gets LOUDER when I hear sounds.  Like instead of me hearing a sound, I just hear the white noise get louder, and then softer when the sound stops.  I can hear the cadence of someone’s speech, except I only hear white noise.  

And to top it all off, I also have the typical tinnitus in my good ear, and it seems to be getting worse and more persistent.

I meditate all the time, do breathing exercises, stay present.  I eat relatively well, I exercise occasionally but I am not sedentary.  I do have a stressful job, but I am the least stressed in this job than I have ever been.

I tried 4 different hearing aids, they all just amplify the distorted sound, and I hated it.  They increased my stress, which worsens tinnitus.  And whenever I wear a mask (I am a surgeon), the mask would rub against the microphone, and I would hear the interference.  

 

Sorry for the long history, here are some questions I have, and I am very grateful for any responses:

 

1.        I hear my tinnitus may go down with a CI.  If so, does it just get quieter?  And also importantly, is it only down with I have the outer piece on?  When it is charging, does the tinnitus go back to its current volume?

2.       Are dinners in loud restaurants better?  Are group conversations better?  I can only listen to one person at a time right now.  I will hear other people talking around me, but have absolutely no idea what they are saying.  This is very isolating for me.  

3.       I am now very sensitive to loud noises, bangs, and bumps in the road that reverberate in my head.  It is extremely distressing when it is repetitive.  Will a CI help my sensitivity to loud noises?

4.       How do you use headphones while having a CI?  Will music stream to your CI, as well as to your headphones?  So that you hear it in stereo?

I have more questions, but this is (already too much) for now.  I will read the forums, and research on my own, but I do greatly appreciate any and all advice.  

 

Thanks so much,

Farshad

 

 

[Mary Beth]

Hello @Farshad and welcome to HearPeers.  We are a helpful and friendly group.

Much of what you describe sounds similar to my experience with Ménière’s disease in my right ear.  It was horrible.

1. Tinnitus- I have had tinnitus for decades.  When I was implanted 8 years ago, my tinnitus changed.  Now I only notice it when my processors are off and it is much much quieter than before.  (During the time around activation, it was very noticeable each night when I removed the processor but that subsided in time.)

2.  Loud restaurants and groups- Before I received my CI I could only function by speech reading one person at a time and group settings were impossible.  After getting implanted, activated and adjusting to my CI that all changed.  I hear fine in loud restaurants and hear very well in groups.  At the holidays we are in loud, busy groups for an entire week and I love it.  Smile

3.  Sensitivity to loud sounds- This is an area I can not help.  I was sensitive to loud sounds with my power hearing aids before being implanted but not sensitive to loud sounds when the HAs were off and I was never sensitive to bumps in the road.

4.  Headphones are very easy to use with the Sonnet2/Sonnet behind the ear processor.  We just need to ensure the headphone cup is large enough for the Sonnet2 to fit inside.  I use BOSE QC35 headphones and they sound and fit great.  It is wonderful to listen to music in true left/right separate audio.  Yes we can stream all audio from our phones directly to the Sonnet2 by using the AudioStream Sonnet2 battery cover which has a built in BTLE receiver.  Med-El’s website lists compatible phones/tablets/TV streamers here:

https://www.medel.com/en-us/hearing-solutions/accessories/connectivity/audiostream
 

I hope this helps.  Have you been connected with a Med-El representative in your region?  If you need help getting connected, @MED-EL Moderator can assist you.

 

Feel free to ask more questions.

 

My CIs have changed my life.  They are life changing tech.  Wishing you the best.

[Dianna]

Hi farshad,

I understand the hearing aids extra loudnes. I have worn ha's for most of my life for slowly decreasing hearing. I have one now on one side and it amplifies and does make me hear parts of my body like bones cracking, breathing, etc. I much prefer my ci side sound over the ha. I had tinnitus on both sides, like constant bird sounds. After being implanted i did not hear bird sounds as often, and as i trained the ci ear, i had blessed quiet when removed for sleep. So for my experience, adding sound through ci much improved tinnitus. 

[Kylie]

Hi @Farshad

I also had a sudden hearing loss with tinnitus. I have had great success with a CI so I hope the same for you.

1.        Tinnitus - mine does reduce to almost nothing when I am wearing my processor. I often do not notice it at all now.  When my processor (outer piece) is off, it does return partially but now that I'm several years post surgery, I don't notice it as much as earlier.   Just after surgery, yes it did go back to original volume every time I took it off. But I think since then my brain adjusted and filters it out better.

2.       Crowds - yes!!!! Loud rooms like restaurants and other places with crowds are soooooo much better.   I can hear people in any environment as before.   

3.       Sensitivity to loud noises -  sorry I also have not experienced this myself. 

4.       I also use either the same Bose headphones that fit nicely over my ear and processor microphone for best stereo sound, or Audiostream to get just the CI, or an ear bud to get just my acoustic ear. Depending on what suits my situation at the time.

[Farshad]

Wow guys, thank you SOOO much. I really appreciate the long responses, and hitting all my questions. 
I am still hesitant, but it really sounds like I would get a lot of quality of life back!

and thanks, I do have many more questions to ask. You guys are amazing. Like how wet can they get. Splashes in the rain are ok?

[Mary Beth]

@Farshad

Yes they have water resistance for that kind of event but they also have waterwear covers so we can hear while swimming.  I love riding waves in the ocean with Rondos in waterwear.

[Tim]

@Farshad  I developed SSD about 15 years ago.  Had surgery and activation in January.  All in all, glad I had it done. 

My responses would be similar to that of @Kylie.  I like that my Rondo 3 has pretty good water/dust resistance.  I don't feel a need to be too protective for the Rondo.  The Sonnet 2 isn't as water/dust resistant so I'm a more protective with it in drizzle. 

Happy to help if you have questions.