Just need a friendly ear......and a patient reader

[Tracie MN]

Hi all,
I've been fretting about a few things for a while, but I'm a bit reluctant to post because I know my concerns are quite trivial compared to most.  I also know that this is the best place to vent and get validation, support and objective advice, so here goes.  I am fairly well-educated and very curious, a bit of an anxious worry wart (doctor translation:  hypochondriac).  I really don't want to embarrass myself by going in to see a doctor only to find out I'm wasting both of our time.  I wish I didn't even know about this little bugger, but that ship has sailed.  So, keeping all that in mind, if you're still reading, here's the thing......

I am 50, with an exceptionally tiny AN (2mm in March 08 - MRI at Mayo, MN).  The main symptom which brought me to the doctor in 9/07 was imbalance and vertigo which, after 8 long months, FINALLY CLEARED!!! 
(Yes it is true what they tell you.  The brain WILL compensate.  Mine was just slow due to vision issues).  I've been annoyingly gleeful since then and enjoying every minute of it!  I have mild bilateral hearing loss in the upper frequencies.  My non-AN ear is slightly worse than the AN ear- possibly noise induced hearing loss from a college concert.  I have had high pitched tinnitus in the non-AN ear since my 20's, and louder, 3-tone tinnitus in my AN ear for a year or so. 

ANYWAY....lately a few symptoms have been troubling me.  I have been experiencing increasing waves of tinnitus in both ears, which I find disconcerting - and increased difficulty understanding people in noisy environments and "mishearing" words frequently.   I am blessed to work at a school equipped with an audiology suite and the audiologist is willing to test my hearing periodically.  We are not seeing any measurable change in my hearing, but I sure feel one.  My AN ear feels "full" most of the time. I am very sensitive to sounds and have to work at following conversation when there is background noise. Lately I will suddenly realize that someone has been repeating my name or talking to me and I haven't noticed.  I also have noticed little balance glitches are happening again, nothing like before though. 

I am very sensitive to the hearing issue because I am a speech-language pathologist who works with hearing impaired students, and I really need my hearing to do my job.  I don't want to run in for the smallest little thing, but also don't want to end up with permanent hearing loss, however small, if it could be prevented.  My thought is, even if I do have some loss going on, what could be done about it anyway?  I am certainly not going to have surgery or radiation for such a small lesion.  I could end up with all kinds of troubles to really worry about.  Wouldn't it have to be 10 times bigger to even be treatable? 

Am I just a menopausal nervous nellie?  Probably.
How do you just "let it be"?
Thanks for reading,
Tracie

[Mark H]

Howdy,
ya sound about like me except I have twins. _both about 2mm)  Our symptoms sound about the same. And as long as mine don't dedide to bother me more I'm willing to leave them alone. I just get MRI's every year or so to keep an eye on them. I'm 55 now so with luck they will never be anything but a built in excuse for my screw-ups at work. "Gee, I would have got that right but I have these darn tumors in my head." It works great. Even the guys I work with use it for me.   
Mark

[Rivergirl]

Hi Tracie, It is hard to watch and wait, many of us are doing it. From what I gather, the position of the AN can produce more or less symptoms than expected. I don't even know what to do with my AN so I am not much for concrete advice but I can validate your symptoms.  Tinnitis, imbalance, ear fullness, hearing loss, and knowing you have a tumor (no matter that it is benign) in your head are all very difficult things to deal with every day, no one understands more than us on this site what that feels like. And about the nervous Nellie, we have a reason for it, you are not a hypochondriac!

[Tisha]

Hi!  I really don't think any suffering of any kind is too trivial to talk about.  I just found out about my AN exactly two weeks ago, however mine is larger.  1.7cm x 1.0cm.  However, my symptoms are very similar to yours right now.  I'm in watch and wait BUT researching everything I can get my  hands on because mine is not teeny.

I also have moderate hearing loss in my non-AN ear, but had perfect hearing in my AN ear.  I decided to go get audiology tests each month (just went last week), to be on top of things.  My hearing is still all in the normal range in AN ear, except for the stuffed up feeling, which sometimes is not bad. 

I'm having problems going to restaurants because I just can't hear well.  This is slightly upsetting to me because my family and I usually go out once on the weekend (kid and DH), and I have a Mom's group that meets everyother month and I like to meet up with friends during the workweek.  I'm not sure how I will balance t his all out.  I don't want to be a hermit, but I do think that I will have to think twice about really wanting to go and where.   I know in the scheme of things, this is trivial, but it is a life I've loved and it's so hard to give it up.  I think we may start entertaining more in our home during the winter.  We entertain ALOT in summer.  To bad we don't live somewhere warm with outdoor restaurants. 

I never had tinnitus in my good ear until a couple of weeks ago and really don't notice it at  all, if it's there, during the day.  Sometimes at night I hear the two-tone belltones and far away running bath water down the drain (that one is kinda of soothing).  I just ordered the MARDAC mask white noice whisper thingy from Amazon.  It got 4.5 out of 5 start reviews.  I'm going to try that on the nights I have problems falling to sleep.  I've been taking Sonata the last two weeks since I found out due to stress and the effects of a steroid I'm on, but that's not a good long-term solution.

I'm much calmer than I was, but I still get very sad about the loss of my "normal" life, hearing, etc.   I know it will get better day by day.  I try to keep reminding myself that this is not a malignant tumor and my life is not at stake. 

Tisha

[wendysig]

Hi Tracie,
Welcome to our group.  I do not think your concerns are trivial or that you are a hypochondriac.  It is possible that you have intrenal swelling that is causing your hearing loss rather than tumor growth of even both.  When was the last time you saw an ENT and had an MRI.  Depending upon where you tumor is located, you can have major symptoms from a small AN.  As you can see from my signature, my AN, while larger than yours, was not considered big    My doc told me that an AN doesn't have to be big or show measurable growth on an MRI to take out your hearing.  Perhaps you should see your ENT again -- if he feels you do have internal swelling he might prescribe a course of steroids to alleviate that problem..

Best wishes,
Wendy

[lori67]

Hi Tracie.

I'll gladly lend you a friendly ear (but I only have one, so I hope that's enough!).

I am a nurse, and believe me, I've seen my share of hypochondriacs.  I don't think you qualify.  Your job depends on your hearing so you have every reason to be more vigilant about it than those of us who don't specifically rely on our ears for our income.  I would certainly be keeping a very close watch on it, because if something does seem to be getting worse, you can act on it right away and hopefully minimize the damage.  I don't think it would be a waste of time to run it past the doctor and let him know your concerns.

If these are new symptoms, then I don't think you can "let it be" until you know why you're experiencing them all of a sudden.  Besides, when it comes to your own head, you're allowed to be a nervous Nellie!   

Lori

[Nancy Drew]

Tracie, Just thought I would pass this on.  My AN doc said he has seen ANs as small as 2mm cause problems and larger ones cause no problems.  In fact, there is someone here on the board whose AN was found by accident, and it was 2.5 cm.  She had absolutely no symptoms.  However, her MRI showed that the AN was in a dangerous area, and she ended up having surgery.  She did lose all of her hearing, but she said she is doing well otherwise.  My AN was found by accident and as you can see from my signature below, it was small.  I wasn't having any symptoms at the time.  In fact , the hearing in my AN ear was better than my nonAN ear.  I was in W&W mode for several years with the annual MRIs to monitor.  My last MRI in May showed slight growth, and I was beginning to have some symptoms.  I saw many doctors, and they said W&W was still an option.  But, most of the doctors said ANs are generally easier to treat when they are small.  I had decided upon my initial diagnosis that I would most likely go ahead with treatment if the AN started growing or if at any time I started having symptoms.  My AN finally met that criteria.  After much soul searching and researching the types of treatments, I decided to go with GK (just a personal decision regarding GK).  I also found a doctor and a facility that I felt comfortable with.  I had GK on Oct. 21st so I am a "newbie postie".  I have experience a few bumps in the road, and I am now on a short course of steroids for some swelling.  Otherwise, I am doing OK, and I have my hearing which was a real concern for me.  I won't know if I have lost any hearing until I have my hearing test in Dec.  The tinnitus is a little louder at times, and I am dealing with some fatigue.  I have fears about what lies ahead down the road, but all in all, I feel like I made the right decision.  Plus, I can't turn back.

I don't think you are a hypochondriac at all.  You use your ears as a means of making your living so it is only natural in my opinion that you would be "super aware" about symptoms.  I think checking with your doctor is a good idea any time something new comes up or if symptoms are bothersome.  My suggestion is to find a doctor you feel comfortable with, and one who is experienced in treating ANs.  The AN journey is a difficult one.  People on this board told me you will get to a "gut" feeling about what to do, and it is true.  I wish you the best on your journey.

Nancy 

[beancounter]

Hi Tracie, welcome.  I feel a little odd welcoming anyone, as I am not here much and certainly don't have the credentials to be Norman the Doorman.  I, too, have a small AN and am in watch and wait status as well as mental pause (where the fun never begins...lol).  How to let it be.....I have focused most of my attention since my diagnosis on an injury I received late last year, for which I am still in physical therapy.  I haven't even had a follow-up appointment since my diagnostic MRI.  Ironically, my injury has helped me learn to let it be.  Being one who has always been in control, I have learned that any sense of control I think I may have is simply an illusion. There is a wide variety of people here with various and sundry problems related to their AN, and because of this wonderful group of caring people, we know we aren't alone.  "And when the night is cloudy, there is still a light that shines on me, shine until tomorrow, let it be".

[Rivergirl]

"Whisper words of wisdom, Let it be"


Not that I am advising you to do nothing, just had to chime in on the song.  You must research your options and find your comfort zone somehow with it.  Best of luck with your watching and waiting from a  W & W.

[ZigZagGal]

THANK YOU ALL  for the support, validation, inspiration and advice!  Thanks for sharing your stories, thoughts and song.  It is so comforting to feel not so alone and not so crazy after all.  It helps to get it all of those circling worries out of my head (sorry for the pun), give them some air and find out they really aren't self-indulgent, foolish or unjustified.   I now have all of your helpful posts to read  whenever I feel unsure of my perceptions.  What a gift! 

I feel more empowered to call my doctor whenever I think it is necessary. A few days ago I received a notice in the mail from Mayo that my next MRI and audiology workup is scheduled for mid January.  That was a relief.  I thought I would have to wait until March again, and that I would have to schedule it.  It is a comfort knowing that an appointment is out there in the not too distant future.  I also know I call there if I have urgent concerns and I will be treated with respect.  It is a great place, and I'm lucky to live so close and to have decent health insurance that will cover it. 
Shine until tomorrow....Let it be.
Tracie

[Jim Scott]

Tracie or ZigZag Girl, whichever you prefer ~

I apologize for somehow missing your original message.   I don't have a lot to add to the cogent comments already posted to you except that I also believe your concerns are valid and that you are hardly a hypochondriac for noticing changes in your equilibrium and hearing.  The January MRI certainly comes at a good time.  With the results, your doctor will be able to tell if your AN has grown and if you need to address it sooner rather than later.  As you probably knew, small acoustic neuromas can be just as problematic as large tumors.  It depends on the placement and the rate of growth.  I hope your AN does not present a problem but whatever happens, you'll certainly be justified in your concern and of course, you'll have the support of the many folks here that share your situation and want the best for you. 

Jim