Watch and Wait > For those in the 'watch and wait' status

Now I have tinnitus...

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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

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