Author Topic: Strange reaction to loud noise  (Read 5224 times)

suz

  • Jr. Member
  • **
  • Posts: 76
Strange reaction to loud noise
« on: March 29, 2009, 09:26:41 pm »
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? 
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

EJTampa

  • Hero Member
  • *****
  • Posts: 604
  • Rays Vs Red Sox Game 2 ALCS (Isabel and Ernie)
Re: Strange reaction to loud noise
« Reply #1 on: March 30, 2009, 06:38:09 am »
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
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

pauline

  • New Member
  • *
  • Posts: 24
Re: Strange reaction to loud noise
« Reply #2 on: March 30, 2009, 07:00:57 am »
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
Pianist & Piano Teacher
Diagnosed 6/27/08
Watch and Wait

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: Strange reaction to loud noise
« Reply #3 on: March 30, 2009, 08:21:04 am »
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

  • Jr. Member
  • **
  • Posts: 76
Re: Strange reaction to loud noise
« Reply #4 on: March 30, 2009, 08:56:10 am »
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.
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Strange reaction to loud noise
« Reply #5 on: March 30, 2009, 09:05:04 am »
THis is way better than FACEBOOK.

I'm happy to hear that.  ;D

The general term for increased sensitivity to sound is hyperacusis, if you feel like Googling it. There are various strange ways it can happen.

I'm glad you decided to post. Welcome to the forum.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: Strange reaction to loud noise
« Reply #6 on: March 30, 2009, 11:39:44 am »
It sure is good to know I am not just hypersensitive ..... as in "You are sure jumpy!" when I wince from loud noises.  Initially, right after surgery, it was so bad I could not stand to attend even a symphony concert.  It has gradually gotten better ..... or I have learned to adapt better ..... but some days even rattling a paper bag on my AN side makes me jump.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Strange reaction to loud noise
« Reply #7 on: March 30, 2009, 11:47:05 am »
Suz -

I haven't had this issue, but I wanted to say hi and welcome to the forum  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Esperanza

  • Full Member
  • ***
  • Posts: 147
Re: Strange reaction to loud noise
« Reply #8 on: March 30, 2009, 01:45:48 pm »
Hello there,

I am SSD on my AN side but still have some strange reactions to noise as sometimes my good ear is sensitive and it distorts my tinnitus.  Not been able to get a reasonable explanation so far.... 

I have to say I am a little confused by W & W with mild hearing loss  what is the waiting for if hearing is fluctuating wouldn't it be better to have it treated? Individual choice I know but profound hearing loss was part of my first 'proper' symptom and I don't think I would have waited to have the AN treated if I had any chance of saving the hearing.   Although I cope well, it's most definately harder and it's not something that's easy to relay the experience of (if that makes sense?!)    Give me tinnitus with hearing rather than tinnitus and SSD anytime and I would plum for the chance of hearing preservation surgery too.

Personally I know a few people in my profession with hearing related problems - 1 with  AN (removed), 2 with Cholesteatoma and I was at a small wedding party a few years ago with someone (female) who subseqently was diagnosed with an AN - neither of us knew we had them at the time... also had a lady through my previous ward placement who was treated for one 10 years ago...


What are the chances of that...   :)

Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Strange reaction to loud noise
« Reply #9 on: March 30, 2009, 04:03:40 pm »
Hello Suz - and welcome ~

We wish you had posted sooner, too, but even though it would be best if you didn't have an acoustic neuroma, you do, so we're glad you're here, now, and that we can offer you our support. 

Prior to my diagnosis and surgery, I never experienced the bilateral sound intensification you described but, apparently, it is not uncommon.  Unfortunately, watching-and-waiting may occasionally impose some level of discomfort at times and it remains a possibility that you'll have to address the tumor at some point in the future.  Meanwhile, I trust you'll not suffer from any more train conductors with piercing voices.  Meanwhile, choosing to enjoy today with all it's sounds, mellifluous or otherwise, is a smart choice.  :)

Jim   
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Lilan

  • Sr. Member
  • ****
  • Posts: 372
Re: Strange reaction to loud noise
« Reply #10 on: March 30, 2009, 04:48:32 pm »
Loud sounds definitely bother me. When an ambulance goes by, I cover my ears. I passed a street musician=drummer a few days ago and was too kind to do so, but it was all I could do not to then, also!

I also started wearing earplugs when I blowdry my hair!


Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!