Treatment Options > Radiation / Radiosurgery

Hearing preservation CK and GK experiences

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gbly:
Ivana,
Sorry for the delay.  I am like richcooks in not going with GK.  I did 3 doses of proton therapy over a week, with the mask.   I had lost approx 50-60% of my hearing before, that is why I figured out something was wrong.  I woke up one morning and had lost all of the hearing, scared me like nothing I had ever experienced.  I was originally in a WW, but at the year mark, it had turned into a rapid growing AN.

After the radiation, I have lost some more hearing, I would say I have very little left, I do have a hearing aid and when it is in, I hear some, but once out, nothing.  Might be somewhat dependent on the hearing aid, but not sure.  I had some vertigo before the treatment, but none after.  My face was fine, but about a month or so after, my nerve might have gotten stretched when the tumor swelled and then shrank.  It is getting better with time, Sept. will be a year. 

My 6 month MRI showed that the radiation worked and the tumor was dying.  Dr. said come back in Feb for another.  Steroids help with the face, and I know with time will get better and better.  I look at is as a small price to pay.  My blinking is the most obvious of something wrong, my eye's shutting in not synched.  I do facial exercises to get it better or keep everything to kick in and work...

I hope that helps and keep us posted on what you are thinking.  We are hear to listen and let you know what happened with us.

Left ear AN
.4 cm - April 2019
.7 cm - Aug 2019
1.7 cm AN - Aug 2020
Sept 2020 start 3 rounds of Proton Therapy
Total dose of 2100 cGy (centigray) in three separate doses of 700 cGy each.

mwatto:
My hearing loss is minimal (maybe in some frequencies?)  and no tinnitus (or so faint I am not aware of it) I had CK 3 x fractionated two and a half years ago. No issues - testing hearing this year in a months time for my specialist as  do every year and next MRI will be at 3 years in Feb next year. No issues to date.

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