Tinnitus, hyperacousia and GK?

[frenchjoey]

Hi everybody!
As some of you may know from other posts I am now one month post GK. My tinnitus and hypersensitivity to noise are starting to get worse and of course I don't like the prospect of things getting totally out of hand. I know these symptoms are to be expected in the months post treatment but I was wondering if someone somewhere on this forum has experienced some sort of improvement later on. In fact I'm HOPING someone will reply and say that after a couple of years things finally quietened down (if I may say so ) for them and they are now able to go to the restaurant without having to wear ear plugs!
I know that a lot of people finally get used to constant buzzing, ringing, humming and so on but surely the possibility for real ... actual .... definite ... undeniable improvement is not totally out of the question! ... Or is it?
Please say yes! I desperately need some (slight) encouragement 
Cheers from France
Joey

[ppearl214]

Joey

Although I had CK, not GK.... short answer:  yes.

I am now 5-1/2 yrs post CK.... and for me, yes, things calmed down. I kept my radio-onc and neuro-onc updated in case they had to make any recommendations (ie: temp use of steroids, etc) to help the cause.

Yes, over time, as you note, I have learned to deal with the times that the tinnitus and such enhances (for me, usually when I am over-stressed or over tired, etc) but, what you are noting.... yes, I can report that years down the road, for me..... yes.

As you know, "individual results may vary" and this does not apply to everyone..... but you requested words of encouragement... and I can report.... many years down the road..... "yes"

J'espère que ceci aide. Etre bien
Phyl

[Seamar]

Hi, Joey,

I'm so sorry that you're having so much trouble with the dratted noises.  My tinnitus is worse too, but I don't have hyperacousia; at least, not yet.  I can see that it's giving you a really bad time.  Phyl does offer some hope, however.  Perhaps others will come along and echo her experience.

May the volume of the noises in your ear be turned down soon.
                                                                                           

[mattsmum]

hi there - i had hyperacusis, both before and much worse after radiation. i had desensitisation treatment with white noise generators for about 3 months - and although i was sceptical at the beginning it did work. i no longer have hyperacusis.
i also have tinnitus - that has not decreased for me but i have 'habituated' and it only bothers me at times now (usually towards the end of the day). i am 17 months post radiation.
do you have a hearing therapist? that is who treated my hyperacusis following referral by my ent.
best wishes,
vikki

[PaulW]

I had hyperacusis before CK treatment, and it got worse after CK.
From 2 weeks to 2 months was the worst of it, after 3 months it had improved a lot
Was making great friends with the children, turning down the TV, telling them to be quiet all the time.
Walking away from their violin practice...
It did slowly get better, much better.

After 6 months I went back to my first Night Club, and coped....just..
Everyone is different but for me at 16 months Post CK, hyperacusis is pretty much gone, and the stereo in the car gets cranked up again when I drive to work.

[frenchjoey]

Thanks so much everyone for your positive feedback! I am aware that everybody reacts differently but at least now I know it can happen. I had hypersensitivity to noise before GK but not as much and I never thought I would one day say that I would be happy to go back to the pre-GK level.
Since my tinnitus is noise-induced it's a bit of a vicious circle. Even the lightest noise (including my own voice) will set off a loud continuous woushhhhh sound accompanied by beeeeeeps that might only very slightly recede (if I'm lucky) after a few hours in complete silence (i.e.only at night). It's a bit scary to think it will get louder and louder as time goes by and that I will end up ..... (can't even think of how to end my sentence)
So I'll stop moaning and instead will keep thinking of your encouraging experience.
Take care!
Joey
Mind you the positive aspect of all this is that I've had to tell my students to be extra quiet because of an inner ear problem and ...... it works!! They're extra careful so much so that sometimes I can't even hear the question they're whispering