Now I have tinnitus...

[amye]

Hi Everyone;

I haven't posted for awhile, although I've been on the forum quite a few times. I've been trying to W&W peacefully and focus on my everyday life (kids, job, horses). Here's my update: balance nerve issues significantly better - I'm pretty much back to all my former activities albeit with a bit of wonkiness at times. However, over the past 3-4 weeks I've developed tinnitus and its driving me nuts. I'm now second-guessing my W&W decision - could I have prevented this symptom by acting sooner? Anyway, now its here and here are my questions:

1) What does this onset mean? (My MRI was in Mid March - could this thing be growing that fast?)

2) How did you deal with the onset of your tinnitus? Did it fluctuate at first before becoming constant? Does it ever diminish?

3) Do any of the treatments work? I've been reading about TRT and Neuromonics.

4) Will I really reach a point where I don't notice it? I can't imagine living with this for 40 more years...

So here's the next update. Now that my balance is better I'm seriously considering radiosurgery. I've been talking with Dr. Kondziolka (UPMC - GK) and Dr. Chang (Stanford - CK). Both offer very promising results. My primary concern (now that I can walk around) is hearing preservation (I have all now except for high frequency loss). Also stopping further progression of the tinnitus if this is possible. 

What to do what to do...

Thanks for being there,
Amy

[Adrienne]

Hi Amy,

I'm new to all of this still too, but thought I should just tell you that I didn't have tinnitus prior to surgery, but I've had it 24/7 since.  So I wouldn't go into the surgery thinking that will make it go away.  The ENT surgeon said to me after the surgery that it will go away, but since I haven't even had an hour of peace from it since surgery (6 wks ago), I'm doubtful.

Oddly enough, I actually do have times when I'm not 'aware' of it.  Usually when there are other things to focus on (movies, conversations, music, etc).  It's only when I stop and think about it that I realize "yep-still there".  When it's silent, I'm very aware of it.

Sorry.  I remember the 'wondering' all the time when new things popped up and how stressful it all was.  For me, it wasn't an option to watch and wait for that very reason (well, truth be told, it was too big too....LOL). 

Good luck with whatever you decide.
Adrienne

[Mickey]

Hi Amy, As a W+W, I have had tinnitus for 30+ years.  Iv`e know of My AN for 2 years. Over the course of the past two years I tried neuromonics which has helped.  Amy, this is an unkown something that occurs for many for many different reasons. Just take the courses of action for as much as you can and come up with the best answers and treatment which will suit you. Stay healthy  as possible and in the long run you will prevail and have a good life.  God Bless, Prayers are with you, Mickey

[Tisha]

I hate to say that I didn't have tinnitus in my AN ear before CK and now I do.  Anything like that is a bummer, but it really doesn't bother me.  It's relatively quiet, a low soft static.  I don't notice it most of the day.  I also have it in my other ear, which is louder. 

I find at night that sometimes I wish for total silence.  Thankfully it doesn't hinder my falling asleep.

Everyone is totally different, it might not happen to you.  Just one of the the frustrations with deciding what to do, I know...no two people's outcomes are the same.

Tisha

[cindyj]

Hey, Amy!  You know my story and details , just stopping by to say "hi" since we keep playing telephone tag...

I'm sure you'll get some good advice/thoughts from foks...my tinnitus was on overdrive this weekend with all the fireworks!  It really has just become such a part of me that I really don't consciously think about very often...I always know it's there, I just don't acknowledge it very often.

Talk to you later this week, hopefully!

Cindy

[CHD63]

Amy .....

You already have read several valuable experiences related to tinnitus.  I have to be added to those who did not have tinnitus before surgery, but do now ..... and in both ears (happened slowly over the months since surgery).  As others have said, I can tune it out most of the time except when it is quiet ..... and whenever there is much ambient noise (e.g. restaurants, AC running, etc.) it is definitely worse.  The only time it really bothers me is when it gets loud and I am trying to hear conversation ..... then it frustrates me.

It seems like having an AN and tinnitus go hand in hand for many of us.

Clarice

[amye]

Thanks everyone for your input and support. I can't imagine going through this process without this forum!

For some reason I had underestimated the bothersome nature of the tinnitus and it has caught me off guard. I guess because it is so new, I can't seem to stop "listening" to it. It is encouraging to know that there are others out there dealing/coping with it day to day. It's a pretty out of control feeling for me thus far, and the more research I've done the more discouraged I've become. And what a bummer when treatment of the AN makes it worse! 

Mickey, can you tell me more about Neuromonics?

Amy

[suz]

Hi Amy,
I can understand your feeling like you couldn't possibly live with the tinnitus forever...When I first met with my neurotologist(Dr. Wilcox at  Thomes Jefferson Hosp. in Philly) i fully expected that he would be able to suggest SOMETHING to make the persistent ringing go away. But he instead said that "most people just get used to it and don't notice it after awhile". I truly felt like slapping him at that moment! But  he was right. When I think about it, I hear the ringing loudly - and if I am exposed to a loud noise the tinnitus will be even louder for a period of time - but mostly I don't think about it at all.  I hope this happens for you soon.   I just had a crazy thought - but when I hear tinnitus I can think of you and all of the AN community and know this is a song that only WE get to hear!
Suz

[moe]

Hi Amy,
Tinnitus and I go WAY back! Before I was diagnosed with AN, I had it for about 20 years  and just learned to live with it.
Started with an ear infection. I would have my ears/hearing checked every couple of years. I don't think it started with the AN but who knows.

Even the slightest change in the shape or character of the AN may affect the tinnitus. IMO it doesn't necessarily mean the AN is growing way "faster" but the MRI will tell.

So yea, even my neurotologist suffers from tinnitus. Maybe it's why he went into the field!

Basically, staying busy helps me, and being outdoors helps tremendously.
Masking the tinnitus with ZEN type music helps too.
I'm SSD with tinnitus so it  is even worse now. What do do?? Like you said....


Since your AN is small, but the tinnitus is bothering you, maybe look into options, surgery being the last.

Tinnitus is tough. It sucks What does yours sound like?
Just gotta learn to live with it, and since it is worse for you, it is a new sound that you can't ignore. Once you get used to it, maybe it won't be so bad. (gotta have something positive to say!)
Maureen
And no I wouldn't sweat the W and W in terms of making the tinnitus worse. That hearing nerve is just that- a very sensitive nerve.
Good luck and keep us posted.
Maureen

[foodsmarts]

Hi Amye. I'm so sorry to hear that you're experiencing tinnitus. It was tinnitus that sent me to my doctor and ultimately led to my diagnosis. Over time, as everyone has said, it sort of fades off into the background. When I get into a particularly noisy environment
it bothers me more...at home, I can manage it. You might try some of the tinnitus masking sounds that are available online. I have a rain CD that I play when it's really bad...or I watch TV or try any kind of distraction. Physical exertion helps me, but some people on this forum report that it exaggerates the tinnitus.

I too am scheduling radio surgery with Dr. Chang. My AN doubled in size over an eight month period so even though they are usually slow growing, some are not. I experienced almost overnight severe hearing loss ("profound rising to severe") in the AN ear. The hearing loss was sudden - I heard some clicking sounds and then nothing.   

I guess these things are unpredictable. I expected to sit with my AN (.5 x .3 cm at diagnosis) and hopefully do nothing - I'm 66 and hoped intervention wouldn't be necessary. Eight months later my AN measures 1.1 cm x .5 cm. I had no idea symptoms could appear so fast and had I known, I would have opted for radio surgery immediately - before all the symptoms -vertigo, pain behind the ear,
distorted taste perception - and deafness. If it weren't me it was happening to, the taste perception would be more than interesting -
it changes daily - but mostly I can't perceive sweetness or on days that I can, it's at about 20% of normal. Now I'm training myself to enjoy and savor the "aroma only" pleasure of my nightly glass of wine, learning to ignore the distorted taste messages and concentrate on the nose. A challenging exercise and another distraction from the alarm clock ringing in the brain. 

Bottom line is that I think you are making a good choice to move forward quickly and have it treated.

Helen

[CHD63]

Helen .....

I know that Amy started this thread on tinnitus, but I want to comment on your rapidly growing AN.  I, as well, had the unusually fast-growing type of AN ..... from no evidence on an MRI of any tumor to 13 months later having a 2.0 cm AN.

My hearing loss was also sudden, although it was only a 20% loss prior to surgery ..... ended up losing 80%.  I did not have the taste issues and no tinnitus issues prior to surgery ..... constant tinnitus since AN removal.

I am curious if your radio surgery has been scheduled yet ...... I hope so if you have a rapidly growing AN.  Let us know.

Clarice