I'm torn!

[Itheus]

Hello!

This is my first post, and just wanted to thank the creators of this site.  I keep reading how rare AN's are, so to have a site like this to speak and read others' thoughts make things a little easier.

I'm 31 years old, and about a year ago I experienced moderate to severe hearing loss in my right ear...also with pretty bad tinnitus.  I didn't think much of it at the time - bad hearing has run in my family.  However, I finally went to the ENT to get it checked out.  I got my MRI, and sure enough, I have an AN. 

The doctor is telling me it's very, very small though.  About 2mm x 2mm.  I have no other symptoms other than the hearing loss so far.  I think I want to do the wait & see approach for the time being - but after reading some of the sizes of other posters' tumors, I wouldn't expect to have such severe hearing loss!  So part of my wants to nip it in the rear and get it taken out.  The Doctor discouraged radiation due to my age - he said it would have to be done several times, assuming I live the average life expectancy. 

I'm a bit nervous...somewhat freaked out.  You probably get these sort of posts frequently, but this seems like a supportive community.  I guess more than anything this is more of a rant.  I'm somewhat of a private person when it comes to showing/sharing emotions...

Anyway, I look forward to frequenting this board.

[CHD63]

Hi Itheus and welcome to this forum of caring, supportive friends .....

I did not have radiation, but the fears of young people having radiation treatment for their ANs has largely been thrown out.  Others will chime in here soon about that.

In the meantime, if you have not done so already, send for the free information packet from the ANA.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195  These booklets contain a wealth of information and much reassurance.

Gather up all of your questions and ask away ...... this is not a shy group of people!

Best wishes.  Clarice

[kenneth_k]

Hi Itheus.

Welcome to the forum. I hope you can find answers to your many questions on this site. It is quite understandable to be freaked out at this stage. I trust you move onwards to information gathering and decision making soon. Please remember that these tumors are benign and slow growing. Unfortunately, even small tumors can cause hearing loss. There is no way to tell in advance because each of us is different.

Best regards,

Kenneth

[leapyrtwins]

after reading some of the sizes of other posters' tumors, I wouldn't expect to have such severe hearing loss! 

One of the things about acoustic neuromas that has always puzzled me is how large tumors sometimes cause few and/or small symptoms, while small tumors can cause many and/or big symptoms.  There have been cases of patients who had no idea they had a large AN because they didn't have any symptom that alerted them to it.  On the other side of the coin, there have been patients with tiny ANs that have wrecked havoc in their lives.  Not a lot of rhyme or reason here.

Watching & waiting is generally a good idea with small ANs, since most ANs are slow growing, but when the symptoms start to increase or cause issues in your life, treatment should be considered sooner rather than later.

As far as radiation not being for young people, because "it would have to be done several times" that isn't relevant in the AN world today.  It may have been once, when radiation was commonly given in multiple doses, but these days with options like cyber knife (CK) and gamma knife (GK), it doesn't really apply. 

I echo Clarice's suggestion; if you haven't already, request the free brochures from the ANA.  They are invaluable.

Ranting is perfectly fine on the Forum; lots of us do it all the time - never hesitate 

Jan

[suboo73]

Hi Itheus!

Sorry you have to join our exclusive AN club - but WELCOME - the folks here are FANTASTIC!.

I agree with Jan, not a problem to rant - we all understand, believe me!
----------
I am here with my sister, both going on year 3 of Watch & Wait.
Since all situations are unique, it is ultimately up to you as to how you want to proceed on the AN journey.

It is important to have experienced AN doctors, and multiple opinons can help you decide treatment options.
(Just my two cents.)

We are here for you - keep reading and keep asking questions!
When you get tired of the research, give yourself a break and take a break. 
These are mostly slow-growing and benign tumors.

Prayers all around as you go on your journey!

Sue O.

[Itheus]

Thanks for your responses.  It's just great to know other people know what I'm going through - don't get me wrong, I certainly don't wish anyone to go through this, but it's just nice to have support group!  Social situations have been getting frustrating to me, so I'm trying really hard to keep positive and not go into 'hermit mode'.

[Jim Scott]

Itheus ~

Please accept my slightly belated welcome.  Previous posters have offered you much useful advice that I cannot substantially add to so I'll suffice it to state that your anxiety at this stage is perfectly normal and of course your ranting is, too.  Most of us have done the same at some point.  Because of the relative rareness of acoustic neuroma and the very specific challenges it brings (pre and post-op) our 'community' is understanding and naturally supportive.  We don't second-guess anyone's choices and we try to be as helpful as we can.  We'll be looking for your future posts.

Jim