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

Strange reaction to loud noise

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suz:
Hello, I am new to this discussion forum. I have been a W&W patient for two years now with a 1.5 cm AN that has thankfully not changed one bit since diagnosis. I have avoided reaching out for support from other AN-er's because I really haven't wanted to face some of the scary possibilities of this tumor. I read the newsletter I get every month and mostly it depresses me. Since my symptoms come and go, I am able to put it on the margins of my life which I am grateful for. But recently I had an abrupt change and this led me to look at the website again for info. When I found this discussion forum and read some of the posts I felt so relleived to hear fellow AN-er's similar worries and hopes. I know you probably know how healing it is to connect this way. I am sorry I haven't done this sooner!  Anyway, here is the strange thing that happenned: I was on the train coming home from work and the conductor was announcing the stops. It seemed to me that the announcements were overwhelmingly loud; her voice literally hurt my ears. Oddly, I looked around at the other passengers and no one seemed  bothered by the noise. But me, I was holding my ears as we approached each stop. By the time I got home, both ears were ringing so loudly I could barely hear anything. That subsided a bit, but my AN side was almost completely deaf for about a week with a profound increase in tinnitus. (Prior to that my hearing loss was mild and I am pretty much used to a certain level of tinnitus.) Luckily, it seems to have recovered, and I am almost back to the way I was before that awful train ride. Has anyone experienced this before? 

EJTampa:
Hi Suz,
 
First, welcome to our fun little group!  I'm glad you decided to come on over and post.  You will find us both serious and humorous, depending on the situation at hand.
 
Your AN is similar in size to what mine was before I had surgery.  Tinnitus is what eventually convinced me to see an ENT, and then the MRI for comfirmation.  Your experience on the train is a little strange to me only because you say both ears were affected.  For me, it was in church when the organ was playing.  My AN ear would "play" the organ sounds just like a broken speaker would, with a sort of vibration and distortion.  The tinnitus in my AN ear would remain louder with more unique sounds for several hours after leaving church.  By the following day, I would be back to normal.
 
So I guess the answer to your question is Yes, I have experienced something like that before :).
 
It's great that your tumor has not grown and you have been able to keep watching and waiting.  I was having fairly rapid changes in my hearing over the course of a few months, so I opted to get it taken care of sooner than later.
 
I'm sure there will be others with similar hearing experiences willing to share their experiences as well.
 
Ernie

pauline:
I get the distortion and heavier tinnitus everytime I play the piano or teach - which is everyday.
There are many times that I feel like it travels to my good ear and then I get the ringing in the good ear also
at a different pitch.  It has been frustrating, annoying and emotionally draining.  I do not play the piano as often
as I used to and have had to accept playing pieces that did not have so much sound.  I am trying other creative things to do.
I have also accepted that I have to teach beginners and have to refer my more advanced students
go to other teachers.  After all that though - LIFE IS GOOD!  My problems are just a change of lifestyle.
Looking forward to cyberknife soon!  Much luck to you! 

Paula

Mickey:
Hi Suz! I am in a similar situation all around. W+W for 2 years 1.2x.06 no change in size hearing good with tinnitus my main problem.  I`ve gone for neuromonics which has helped but every once in a while something out of the ordinary happens. Sometimes my tinnitus does get very loud and hearing does get a little distorted. It usually takes about a week to settle back where it was. So far this has been the extent of it. I guess as a W+W there are somethings we are going to have to put up with as long as they don`t get to bad or become permanent. I guess where as good as our next MRI ha ha. To be honest with you, if any treatment would get rid of tinnitus and preserve my hearing I wouldn`t hesitate! By the way I used to work for transit and once was the guy who made those announcements (conductor) before taking another position. Now retired..  Lets keep the faith!  Mickey

suz:
Thanks for three reponses so quickly. I can't tell you how good it feels to connect with others having this same expereince. While it seems like there are so many others out there with AN's, I have never met anyone personally - and I am a nurse! Even my RN mom doesn't really understand what this is like. Many caring folks in my life see it as an "ear tumor" and just don't get the consequences. I have survived metastatic cancer as well, and see my AN as potentially affecting my life more. Hopefully not - my intention is to NEVER have to have surgery or gamma knife at all. But will go with the flow and appreciate TODAY and hearing the beautiful sounds of my son's playing guitar, piano, violin and trombone!
THANKS< THANKS, THANKS for responding. THis is way better than FACEBOOK.

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