This CIICA conversation was led by Robert Mandara (Vice-President, EURO-CIU), with Maggie Whittmore, a late-deafened bilateral CI user in Los Angeles, California and Kelly  Assouly a researcher from the Netherlands.

Kelly is a researcher investigating the effect of cochlear implants on tinnitus, who wishes to build a strong tinnitus community that can empower new tinnitus treatment in research and care.

Maggie emailed: Great –  I enjoyed the last conversation and would love to help!

We heard if and how your tinnitus changed before and during your CI journey. For example:

If you have or had tinnitus, did it improve, worsen, change or stay the same following implantation?

  • If unilaterally implanted, has the un-implanted ear exhibited tinnitus changes?
  • How about when your processor(s) is/are turned off?
  • Do you have any reasons for why your tinnitus changed if it did?
  • Was tinnitus discussed during assessment or after CI?

Robert Mandara showed a really useful way of illustrating changes in tinnitus experience: have a look and find out if you are a Tom, Dick or Harry – or a lucky Linda! Kelly Assouly shared up to date research, and Brian Clearly shared his evolving blog. Have a look at the summary of the conversation available here

People really valued being able to share their experiences.

A lot of what has been said resonates with me and my experience.