Tinnitus and Hearing Loss from Cisplatin — Any Fellow Sufferers with Same Experience?

[jessica_rt]

Hi everyone. I'm new here.

I had Cisplatin as part of chemotherapy treatment in 2008 when I was 18 years old. One month after my first dose, I began experiencing tinnitus and mild hearing loss. My hearing has deteriorated through the years but my tinnitus has fluctuated.

Sometimes it is worse, sometimes it is better. I have bilateral tinnitus, and from what I can make out, about 3 different buzzing noises AT ALL TIMES.

I received my first cochlear implant in 2015 and my second in 2018. My CI's do not help mask the tinnitus at all.

I did have one single moment of relief in 11 years. In the hearing booth, while doing the testing for eligibility for my second cochlear implant, the audiologist wanted to run through a simple hearing test with my left cochlear implant in and an earplug in the right ear. When she put the earplug in, I felt immediate silence. Only for a few moments, and when the test was over, it returned.

I've tried earplugs at home with no relief.

I know that Cisplatin is very damaging. I am just looking for anyone who has had any success, no matter how small, for relief. I am at my wits' end here. It's a struggle to get through most days.

 

[FGG]

Hi, @jessica_rt , I'm so sorry to hear of your hearing ordeals. CIs reportedly help most people with tinnitus but I think they only go up to 8500 Hz (maybe you could clarify if that's true). Is your tinnitus higher pitched?

I know Cisplatin is a bit unique in how it affects the cochlea, too. No doubt that is a factor.

As far as relief... have you heard of Lenire/Neuromod? I believe it can be used with CIs if I'm not mistaken. If you aren't familiar with it, it's a device meant to reverse the maladaptive plasticity in your brain giving you tinnitus by sending a competing nerve signal through the tongue.

There is a Lenire thread here and it is very hit or miss as far as results go but some people report great, even excellent results (and others neutral and I believe 2 people had worsening). There are other bimodal devices being developed (e.g. Dr. Susan Shore's device) that seem to have a better efficacy profile and apparently without the risk of worsening. I believe they will still work with high frequency hearing loss and tinnitus above the range of your CIs but I'm not totally sure. I haven't been following bimodal research as well as I should (though I'm extremely interested in a third device from U of Minnesota but that's probably years away).

Other than that, look for the "TinnitusPlay" app here. Seems to be well designed to help with masking.

Apart from that, I just wanted to offer my sympathy.