Hearing loss and tinnitus soon after CK

[Clairetaylor]

Hi Members

Diagnosed around 2 years ago - this forum and website has been an amazing resource - grateful and thank you!  I had no hearing loss whatsoever, but I was feeling dizzy and that’s what prompted me to ask for an MRI after eliminating various possible and common causes for vertigo.

I had CK at Stanford at the end of Jan 2021. I sailed through it and although I lost my hearing around 3 weeks later with loud tinnitus, a course of steroids got it back for me. I had very good hearing on my AN side before treatment.  I was feeling incredibly lucky as I felt fine until 4 months after that episode when I noticed my tinnitus was worse and I lost hearing again.  My 6 month follow up MRI was bought forward a month and it showed swelling from radiation and necrosis, which was great news as the tumor is showing signs of dying off.  2 courses of steroids this time have not helped get it back. I’m now struggling with the hearing loss and tinnitus but hoping somehow it will return even though the steroids have failed to help.  I’ve been told by Stanford this is now my new baseline.

Has anyone had a similar experience following CK and if so, have you got your hearing back? If you haven’t, what type of hearing aids have helped you?

Thank you in advance!

[gbly]

Clairetaylor,
Great news that the tumor is dying!  What we all want and hope for each other.

Sorry to hear about your hearing.  Funny you say your AN side was your better hearing side, mine was too.  Well until it wasn't...but I am okay with the lose knowing that the tumor is dying. 

I hope you are able to get your hearing back.  When mine went it was actually before the radiation, it was actually what made me realize something was wrong.   I was not surprising it didn't come back, and have accepted the new normal.  I will say it can be challenging when someone is standing on my left side, but I will take the win that the tumor is dying and embrace the future!

Good luck and celebrate the wins!  You got a great one.
Gretchen

[Clairetaylor]

Thanks Gretchen, for your reply!  Yes, good news so far

[mwatto]

I had CK two and a half years ago...I dont have much tinnitus and my hearing seems to be ok - though I am very sensitive to noise. I have to wear earplugs at concerts as sound is magnified since CK - though I have had hyperacusis since I was a child. Seem to have less hearing in some frequencies but very gradual loss. UPDATE - tinnitus and some hearing loss after Pfizer jab one. I joined a forum for this - many experiencing the same. Ugh!

[hal2700]

Sorry not to give you a better story - I had hearing loss after CK as well and didn't get it back   Mine was good prior to radiation and I had been hoping for better hearing preservation. Steroids didn't help much. I have not gone with hearing aids yet. I am accepting that this is likely my new normal.

[SP]

Hi Claire,

I had CK @ Stanford in 2015. Both my hearing and balance were fine before my treatment , given my tumor size this was considered unusual.
Since CK my hearing on the treatment side (left) has diminished by about 50%, I wear a hearing aid when out and about and although its not perfect (what is?), it helps- I have a Hansaton SHD 9, it sits behind the ear and is almost unnoticeable to most people.
I find my tinnitus comes and goes depending on stress levels, although this has indeed improved over the years, it used to keep me awake at night and now most days its hardly noticeable.

All the best in your healing journey,
Stella