Hearing loss

Hello Tonebase community,

My name is Francois, and I’m a lifelong music lover and passionate amateur pianist. Earlier this year, I experienced a sudden and complete hearing loss in my right ear due to sudden sensorineural hearing loss (SSNHL). This has deeply affected my relationship with music and the way I experience sound.

I’m now preparing for cochlear implant (CI) surgery and would love to connect with musicians or music enthusiasts who also lost their hearing as adults and later received a CI. I’m especially interested in understanding how CI rehabilitation affected their music perception, enjoyment, and emotional connection to sound.

I’d also be grateful to learn from musicians who are navigating hearing loss in any form and have found ways to appreciate and engage with music again.

I look forward to learning from you all.

Many thanks,
Francois

6 replies

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    • Angela_French
    • 2 mths ago
    • Reported - view

    A friend of mine who is a singer and pianist had her CI turned on just 2 weeks ago. I don't know how she is doing today., but before her surgery, she told me, she may never be able to hear music again. She was able to understand words right away though, So we are keeping our fingers crossed. I'd have a serious discussion with your audiologist about your concerns. Each person is different.

      • Tomoko
      • 2 mths ago
      • Reported - view

       I am interested in the update of your friend. I hope she is doing well!

      • fogrisel
      • 2 mths ago
      • Reported - view

       I'd love to connect with your friend if she's willing to share her experience. I understand from the CI audiologists at Stanford and UCSF that I talked to that a good number of their SSD patients regain a good level of music appreciation a couple of months after activation, with one example of patient to whom it took 4 years, but now feels that music sounds great! Each person is different indeed. 

    • Tomoko
    • 2 mths ago
    • Reported - view

    Hi Francois,

    I hope you studied and researched enough for the decision to take cochlear implant surgery. My father-in-law had the surgery. What I heard is the sound he hears after surgery and before surgery is completely different, the new sound is like the sound of metal hitting.

     

    You may have already watched “Sound of Metal”, movie about a drummer who lost hearing and got cochlear implant. My mother-in-law describes that the sound they hear is the one in the movie.

     

    He had to learn to get used to hearing the new sound. It has been years since he had surgery, but he is still having difficulty recognizing words.  Sometimes he takes off the device when music is on. I assume it is emotionally hard for him to listen to music with the device. A doctor said about 70 % of people get good results. So, it is possible that he did not get good results.

     

    This website has the sound to simulate cochlear implant processing.

    https://cochlearimplant.lab.uconn.edu/cochlear-implant-information/sounds/

     

    I am afraid that you may be very disappointed with the sound you hear after the surgery. I imagine using one good ear and another ear with cochlear implant at the same time is very frustrating. I am not opposing your decision, but please prepare your mind for the bad scenario.

      • fogrisel
      • 2 mths ago
      • Reported - view

      thank you for sharing the experience of your father-in-law. I've done a lot of research into cochlear implant surgery and particularly into the work of Dr Charles Limb: https://nihrecord.nih.gov/2022/07/08/making-music-enjoyable-cochlear-implant-users

      My understanding is that outcomes are highly individual and dependent on 2 factors: (1) duration of deafness (the shorter the better) and (2) the amount of work put into re-training the ear after implantation. 

      Single-sided deafness is a surprisingly frustrating situation for musicians. Most people will say "well you still have one ear". Spatial depth is gone, color is gone, speech recognition has collapsed, and I've got tinnitus covering all this. CI surgery is unfortunately my next best option.

    • fogrisel
    • Yesterday
    • Reported - view

    I wanted to share an update now that I have completed my research and my surgery is scheduled for February 26.

    Based on conversations with adult musicians who have cochlear implants, as well as clinicians and researchers, it is clear that the technology is, for many, far preferable to remaining deaf. While cochlear implants have real and well documented limitations, especially for music, common vocoder simulations and movie portrayals do not accurately reflect how a cochlear implant is perceived by users over time, particularly in cases of single sided deafness.

    Outcomes vary widely, but the evidence consistently points to two important factors, early implantation and sustained rehabilitation. Even with today’s technological constraints, early intervention appears preferable to allowing auditory pathways to further degrade.

    My hope is not a perfect restoration of sound, but the gradual recovery of some degree of fine grained music appreciation and spatial hearing. For those interested in digging deeper into the research rather than anecdotal impressions, I am sharing two references that I found especially helpful:

    I hope this context is helpful for others navigating similar decisions, now or in the future.

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