Severe tinnitus and fullness

[Patti2007]

This is my first post.  I am in Newport, RI and was diagnosed in October 2004 with 8mm x 4mm AN and had already lost my hearing completely in that side.  I have been in wait and watch mode since.  It continues to grow and I am ready to address this.  My biggest concern is the noise in my head.  It is so loud all of the time that I can't even think straight anymore.  I was told that radiosurgery would increase the noise while I have a better chance with surgery of possibly reducing the noise.  Does anyone have any input on the outcomes after surgery with severe tinnitus?

Also, I still have not made up my mind - but I am 90% sure I will go to House.

Thanks for your help!

Patti

[nancyann]

Hi Patti:  Nice to meet you.  I had constant tinnitus for years pre-op.  Had retrosigmoid 6/06 - almost 1 year out; the tinnitus remained constant, sometimes louder, sometimes I get 'double; tinnitus - the usual in the AN ear & then straight down the center back of my head.  Once in a great while (maybe 3 or 4 times since surgery), it stopped for about 5 minutes (relief !), but then started right back up again.   I've learned to ignore it for the most part.  I have bigger issues to deal with: facial paralysis, eye issues, balance issues,  so the tinnitus takes a back seat.   The docs won't know what condition your facial nerve is in until they get in there, I was one of the unfortunate ones.   House has a great reputation - if you decide on surgery & can go there, that's excellent.  I wish you all the best on your journey.     Nancy

[Catflower]

This is my first post.  I am in Newport, RI and was diagnosed in October 2004 with 8mm x 4mm AN and had already lost my hearing completely in that side.  I have been in wait and watch mode since.  It continues to grow and I am ready to address this.  My biggest concern is the noise in my head.  It is so loud all of the time that I can't even think straight anymore.  I was told that radiosurgery would increase the noise while I have a better chance with surgery of possibly reducing the noise.  Does anyone have any input on the outcomes after surgery with severe tinnitus?

Also, I still have not made up my mind - but I am 90% sure I will go to House.

Thanks for your help!

Patti

My tinnitus has remained the same since my surgery on April 17 of this year.  It is my understanding that surgery won't make it go away.

[ppearl214]

Hi Patty and welcome. There are many of us based in New England (I'm just outside of Boston) and many of us can relate to the "buzzing" or the "crickets" that live in our heads.....

As Bruce has noted, for me.....I have learned to ignore it at times. I find, for me, that if I keep myself busy and focused on something (ie: like typing this post, etc), it tends to lessen in my head..... my hope is that someday, drs/scientists will discover a way to combat tinnitus.... boy, they will make lots of money off of us!

Please consider the NE ANA Brunches that are held in Worcester, MA. This is a great opportunity to meet others in the local area that have had surgery, radiation and watch/wait.  If you look in the "AN Community" forum, there is a thread there for our next upcoming brunch on Sunday, August 5 at Maxwell's in Worcester.  Meeting other AN'ers face to face really does help make this journey easier.... just a thought.

Again, welcome.
Phyl

[Joef]

Yes.. please go to a lunch with us! 

and I agree with the others... chances are very high the "T" will stay the same after surgery .. there is a small chance it could get worse -- there is a small chance it could get better .. everyone is different ..... talk to the doctors at house about it, they will tell you the same... (becase thats where I went!) and my T is the same since surgery...

[Betsy]

Hi Patti,

You've got a big decision to make, but you've come to the right place to talk it out.  Just about everyone here has either been in the same position, or will be soon.

Tinnitus...from what I've read it's not likely to change after treatment.  But it could.  The degree of AN symptoms and treatment results are different for everyone.  So far, I'm with Phyl and Bruce in that tinnitis is easier to take when focusing on something else.  Ask your ENT about tinnitis retraining therapy.  I don't know much about it, but here's a site that has more info:  http://www.tinnitus-pjj.com/

When you say "fullness", what exactly does that mean?  I've always answered no when the docs ask me about it, going on the assumption that it meant feeling as if there's water in the ear.  But having misunderstood the whole millimeter/centimeter thing, I'm starting to wonder if that's what it really means.  Everyone else, please feel free to chime in.

Betsy

[Patti2007]

Thanks for the feedback.  The brunch sounds good, I will sign up.  I have been researching, reading, silently making sense of things.  I am leaning toward surgery at House.  I go for my annual MRI on Friday and will see what results that brings.  As for the fullness, it feels like water in the ear and popping noises.  I had the tinnitus for 10 years, but the drs. never diagnosed the acoustic neuroma until I completely lost my hearing and the ringing was so loud I could not take it anymore.

[Jim Scott]

Hi, Patti:

A belated post I wanted to send to concur with Bruce and others that AN-related tinnitus rarely, if ever, diminishes following surgery.  Mine didn't, even though I had an otherwise successful operation.  Perhaps yours will.  In my case, I've learned to simply 'absorb' the noise and basically ignore it, most of the time.  We all cope in different ways..

As you probably know by now, there is a fair amount of misinformation floating around - especially on the intrrnet - regarding acoustic neuromas and the desirability and effects of both radiation and surgery.  This site remains a dependable source of factual information.  I urge anyone diagnosed with an acoustic neuroma tumor to explore all of the ANA website and by doing so, increase your factual knowledge of this rare but serious condition most of us that post here have to deal with. 

I hope your upcoming decision on surgery gives you some relief, both physical and emotional.  House is always a good choice.

Jim   

[linnilue]

I too have constant tinnitus, it has never gone away although now I don't even notice it now unless the "volume" gets turned up or the tone changes.  I know it's not a pleasant thought for you but like the rest who have responded truthfully, it hasn't gone away, it is a consequence of these darn tumors.  Best of luck and I wish you quiet times... 

[Static]

I first would like to say that I am not a doctor, just a patient.  That being said, my experience with tinnitus is that I had very little, almost none, prior to my AN surgery.  The tinnitus I now experience is so loud, at times, I can hardly hear much with my good ear which I have been told I am hearing with at 100%.  I wouldn't rely on whoever told you the fact that surgery will help diminish tinnitus.  That has not been my experience.  Good luck with your decision.
~Karen