Do you say "brain tumor" or "acoustic neuroma"?

[Kathleen_Mc]

It all depend on to whom I'm speaking....to children I call it a bump in my ear......way in that they can't see. To adults I use "brain tumor" with an explaination. My 1 st tumor was not confined to the auditory canal, it was displacing the posterior lobe of my brain and within mm of the brain stem so I have difficulty calling it an ear thing. In a sense as they say "a rose by anyother name"
Kathleen

[linnilue]

I always say brain tumor because I love to see the look on people's faces.  I have to find some humor in this nightmare...

[Shrnwldr]

I personally like booger myself .  If I say brain tumor everyone like freaks because immediately it sounds like you have cancer.  If I say acoustic neuroma then I have to be patient and explain (sometimes with diagrams) what this is.  Most haven't quite caught the concept that they remove a nerve and that you can not hear.  There is no renovating the inner ear canal, rebuilding the ear drum etc.   So I usually just leave it alone and deal with the apparent issues like hearing and balance.  People I work with have a real clue and people who don't know oh well.  I know that is harass but there are times that life is better without having to explain it all one more time.  I use various terms... depends on my mood and how much I really want to explain. And, Tony it was first presented to me as an acoustic schwannoma...    So now I named my tumor booger henry vs booger pete and he is no more!  Everyone please have a great evening and enjoy

[GM]

Actually neither...  I tell them I have a non-cancerous tumor on a hearing nerve.  I never talk about it actually, unless it's brought up, or if I engage about it which is hardly ever.

GM

[TP]

When people ask I say brain tumor (they only ask because my glasses have black tape over one side due to double vision). Then usually follow up saying it was Acoustic Neuroma, then follow up with I am deaf on one side and some facial paralysis but always end my conversatoin saying I am doing great (which I am even with the side effects)!   

[Pembo]

Brain tumor - it does emphasize the seriousness of it all.

[tony]

To some degree we forget just how far medical science,
and operational success, has come
(the first surving OP was only 1912 (??))
Yet if you were to say to familly or co-workers
"a bullet the size of a golf ball passed clean through
my lower skull, taking out 2-3 nerves along the way..."
....But I am feeling much better now,  thank you....?
I should like to see the look on their face.....
Best Regards
Tony

[neal r. lyons]

just answer any queries with "vestibular schwanoma" that's as accurate as you can get i believe and will likely elicit a moment of silence  it's got a classy ring to it  neal

[marystro]

I tell people I have a benign brain tumor which started from the hearing nerve.  Most people never heard of acoustic neuroma.  And it seems that as soon as people hear that it's benign, they don't feel that worried...  But I also tell them if it's not treated, it could invade the brain stem and that would be bad!

Mary

[Nancy Drew]

Interesting to hear what all of you had to say.  I guess it just goes to show that we all have to do what we feel makes us comfortable.  I guess since I am a newbie to this, I am just trying to get a grasp of what to think about the whole thing.  This past weekend I was sitting on the patio at my local Starbucks feeling a bit sorry for myself.  I am getting the results of my first annual MRI next week, and I am just a little worried about the whole situation even though my symptoms are minor.  Someone I had met the day before stopped to talk, and she could tell I was troubled.  I took a risk and told her some of the details.  I think I initially said "brain tumor" out of frustration I suppose.  Perhaps "brain tumor" gets more of a response when you need it.  But, I went on to explain what an AN is and that it is a benign tumor.  She was really nice and supportive.  She assured me that there are some people who need some sensitivity training.  You see, the day before a woman yelled at me and said, "What's the matter are you deaf?" when I asked her to repeat herself four times.  So, I think from now on I'm just gonna say please speak up because I have a hard time hearing in my left ear.  If there seems to be some sensitivity on that person's part, and I feel the need to share, then I'm gonna risk it and give more details to educate.  If the word "brain tumor" feels right at the time, then that is what I'm gonna say, I guess.  But, I will always give the fact that it is benign.  No need to have someone wonder.  There are so many others out there with medical issues we don't understand either, and I think since we can relate to their frustration, then maybe we should make a point to listen to them as well.  I really appreciate that woman for listening to me.  I was feeling sorry for myself that day, and I guess that is ok to feel that way sometimes as long as I don't get stuck in it.  Do what you have to do all of you out there.  The most important thing is for us to take care of ourselves physically and mentally.  It's not fun having an AN.  Nancy

[Battyp]

I think for me when you tell someone it was benign they just assume all is well in your world.  For me it is not I am trying to find my way back to work and being able to do the things I did before and enjoyed. When I am frustrated and someone makes a snide comment about not hearing or my drunk walk I say I had a brain tumor.  A lot of times I think I do it for the shock value and to make the person feel stupid for making fun of someone with a handicapping situation. I remember in the beginning trying to minimalize my diagnosis with my family and friends and they just did not understand what I was facing and why I didn't come out the same. Like a few others I had brain stem involvment. I know I will always have side affects from my tumor and will explain only when I have to and depending on how I'm feeling for the day will depend on it I say "brain tumor" or inner ear problems 

[TP]

Since my mom died a few years ago from heart surgery I learned from reading her death certificate her cause of death was associated with diabetes. Before my mom died and I heard someone had diabetes I didn't get that alarmed. However, after having experienced someone very close to me and someone who I loved dearly suffer from side effects and then die from heart surgery I realized suddenly I didn't have a clue about alot of stuff regarding health issues in life!

I was not very sensitive to folks with health problems prior to my AN. I've always and still believe in eating healthy balanced food (although potatoes, bread and dessert are still my favorites), exercising, getting out in the sun and getting plenty of rest. I have not been one to take medications so I've NOT been very understanding of folks when they do. However, the few months before my brain tumor was diagnosed I was suffering from horrible head aches (never had them before) and had to take pain pills. After my AN was removed I was fortunate that I only took a few pills for a few weeks after my surgery. Only recently have I been taking some aspirin in the evening due to some mild head aches. I've learned thru my ignorance that everyone is different, some folks are not as strong as others, some folks experience more pain than the norm, some folks recovery time is shorter or longer than mine and I need to be understanding of folks when they share with me their health issues in life and not be so judgemental. Since my surgery I pray alot more for my friends when they tell me they are not feeling well or have something wrong with them. I know prayers got me thru my recovery process!

So if someone asks me about my situation I believe I should share with them that I've had a brain tumor. I don't go into details unless someone asks and usually they don't. But if they do, they will be in a better position to learn a little more about the seriousness of a brain tumor and yes even if it is benign it is life altering and does change our lives quite a bit...   

[Nancy Drew]

Battyprincess, I feel like I owe you an apology because I think you are right about saying the tumor was/is benign, and then people think it's no big deal.  Indeed it is a big deal especially for those who have had treatment and are suffering bothersome and serious consequences or those who have not had treatment and are experiencing frustrating symptoms also.  I think since I am in watch and wait mode with only minor symptoms, I have also taken the attitude of, "Oh, it's benign. No big deal".  When my ENT told me I had the AN, he told me it was benign and nothing to worry about especially since it is so small (4mm x 5mm).  However these things do grow, and that is a big deal.  Also from what I read here in this forum some people even with small ANs have bothersome problems and do come to the point where watch and wait is really not an option.  So, really "benign" is not a word of relief when I see it from your point of view.  Thanks so much for sharing what you did, and I wish you the best.  Nancy