Tinnitus after CK

[marystro]

Hate that Tinnitus.  It's been loud lately but still tolerable.  It's the constant eeeeeeeeeeeeee sound like Denise and Obita's.  Learning to cope with it.  Hoping it's just temporary and won't get worse.  Since I am only close to 6 month post CK, may be it's the swelling?  Keeping my fingers crossed.  Sometimes I even put my finger on the AN ear hoping to block it out (of course, it does not work)...

Mark, Lorenzo, Phyl, Shoegirk, other CK posties, what are your experiences on this?

P.S. At least it does not bother me when I am sleeping.  Once I fall asleep, I don't hear anything.

[ppearl214]

Hi Mary,

IMO, I think it happens, regardless of process.  When I wake up in the morning, I definately notice "white noise" in my left (AN) ear, but disappears rather quickly. There are times mine flares up out of the blue with high, pitched monitone ring. There are those times, for me, when I am overly stressed and I get the "pulsating" tinnitus, mostly at night, after a brutal day.

Since my CK, I do find that mine has eased over time (almost 10 mos post CK now), definately after the 6 mos post treatment milestone.  Mine really doesn't bother me too much as it really wasn't too bad prior to treatment. For me, the worst of it was the first month post CK... after that, definately not often at all... but when it does flare up, I just curse it, actually put my eyes on something to focus (like reading or work or computer or whatever). I find that if I can visualize on something else when it flares up, it seems to lessen.

But, hey.. that's just me.

Hang in there Mary
xo
Phyl

[Mark]

Mary,

My tinnitus was fairly mild before treatment in that if I focus on it I hear it, but it generally fades in the background otherwise. After treatment I would have periods where it would spike up at various times but usually only for an hour or two in duration and then return to normal. That went on probably for the first year to 18 months with a diminishing frequency. Otherwise, it pretty much is at pre-treatment low levels today unless I do something to agigitate it such as go to noisey environment ( loud restuarant, concert, etc). I would suspect that at various periods after treatment when radiation irritation occurs it may aggravate it temporarily. However, in general, I've always read that Tinnitus is really driven by the brain hearing "phantom sounds" from the damaged nerve, so I would expect it would gravitate back to the pre-treatment levels but I wouldn't expect it to improve as a result of treatment either. But I'm guessing about that, might be a good question to pose to Dr. Chang and see what his thoughts / expereince on Tinnitus are. Hang in there, I'm sure it will get better in time.

Mark

[Lorenzo]

Hi Mary,

I had the same thing, louder tinnitus, and also some decrease in my hearing. I asked Stanford about it and the response I got was that it most likley was due to some swelling of the tumour after CK. Next MRI will tell you if that is the case. In my case, it was. The MRI showed an increase of 10 - 15% in size. They decided not to give me any steroids to control it, as the swelling was within the normal parameters.

maybe this is the case for you too. Have you spoken to your docs?

Ciao, Lorenzo

[marystro]

Thanks for all the great advice.  I have not talked to Dr Chang yet but am pretty sure it's the irritation and swelling side effect of CK.  It's so tolerable and I should not be complaining.  Just wanted to whine once a while  .  Hope it's ok.  You guys are such good listeners!!

Lorenzo - love your website and graphics.  Wish I had some artistic talents like yours.  It's a gift!!!  They are terrific!  Anytime you want to move to the states, we may have some other job opportunities for you.  Graphic artists are highly sought after in our field now - cell phones and websites are constantly looking for artistic directors to design better user interface.  I am serious.

Mary

[Lorenzo]

Mark,

I did ask the question about tinnitus decreassing after treatment (hopeing it would, but not really thinking it would) and no, it doesn't. This said, my periods of louder tinnitus are now limited to ones casued by exposure to loud noise, lke you! My advice? use ear plugs, foam ones for not so loud places, wax for LOUD places. It's the only way to protect our ears. Oh, nad by the way, I'm talking about protecting BOTH ears, the 'bad' one because of the discomfort, the 'good' one becasue it's the only good oe we have left!

And yes, tinnitus is caused by the brain, not the hearing aparatus in itself. But, noise and fatigue aggravate it for some reason. they for me anyway.

Mary, I will get back to you on that... Interesting!

Ciao, Lorenzo

[redgrl]

I have it also. It is hard to ignore. Mine gets louder when TV is loud or loud noise stuff like that. I keep wishing it to go away but i am sure it won't. 

[Sue]

This was one of my "bargaining" prayers.  I would take everything else, if the d--- tinnitus would just go away.  If it is any consolation to anyone, I have this story.  One of our local TV anchors out of Portland, Kathy Smith had a horrible misshap with the ear thingies that they wear in their ears during the newscast. She was the victim of a terrific feedback and it caused severe damage to her ear and she is no longer able to work.  There was an article in the paper about her. Coincidently when I was reading that article, back in the fall of 2004, I thought...Hmmm, I have a little bit of a buzzing in my ear. Hmm, must be wax build-up. Wow, was I wrong. Anyway, the article explained why she was no longer on the air and what all she has had to go through to try to live with it.  Our local big hospital, OHSU, who has a tinnitus center, said she had the worst case of tinnitus that they'd ever seen.  They explained it like this:  Think of yourself on the front porch of your quiet neighborhood reading a book and three fire trucks arrive right in front of your house, with blaring sirens, and they never go away.  :'(This is kind of what she is going through.  It's probably three or four times louder that what most of us are hearing.  At least that is what I got from that article. It's so bad that she can't work in broadcasting anymore.  I have since tried to find that article on the Internet, but I can't find it.  It was in The Oregonian. BUT, poor Kathy Smith had many stories to tell and she should write a book.  Many years ago, when she was still on TV, her daughter gave birth to a baby who was born with only a brain stem.  She took a leave of absence to be with her daughter and grandchild until the baby died and then there was a story about that in the paper.  I imagine the pain and suffering of her tinnitus pales in comparison to what they went through with her grandchild.

So now my bargaining prayer is this:  I'll do such and so, if ONLY IT DOESN'T GET WORSE.

Hang in there, kids.

Sue in Vancouver USA

[Obita]

Thanks Sue, what a story.  Makes me hang my head.  My tinnitus is annoying, not life changing.

Kathy

[Sue]

Didn't mean to make anyone feel bad!  I just remember reading that article because it was just at the time when I first started to notice a little buzzing going on in my head.  And I've thought of Kathy Smith more than once since the Fall of '04, believe me.  And I think,  her's must be louder than mine. So, then, mine must be manageable, because it's not as bad as Kathy Smith's.  Some logic, huh?

Sue

[pearchica]

Sue- I think it's great that you shared that story with us- No apologies needed.  When I have been at Stanford this week, I am surrounded by cancer patients who have it REALLY BAD! No wonder the CK crowd is happy to see me in comparision.  One of the Doctors' even commented, "it's nice to work with a healthy patient".  So I do worry that we all get a little self-absorbed with our issues but then again, that's what this website is for.  I just feel really lucky overall. It could be so much worse!  Thanks for sharing the information- I think it's a healthy reminder that we all need on occassion.

Take care- Annie