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

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Nancy Drew:
When you tell someone about your AN do you call it a brain tumor?  I have said brain tumor a couple of times, and it freaks me and other people out.  I find myself now just calling it this tumor thing in my ear.  It's not really a brain tumor is it?  But, you hear it called that.  Mostly I just don't talk about it because I don't have any serious symptoms.  My AN is 4mm x 5mm, and I am in watch and wait mode.  I have hearing problems at times, and I usually just tell people to speak up or I just put up with the fact that I'm going to miss out on the conversation.  I think I am still running in the "denial mode".  Probably won't seem real to me unless more serious symptoms show up.  I just keep hoping it will be one of those that doesn't grow.  I had my third MRI today so I think I am a bit more anxious than usual.  Just interested though how you guys tell people about your AN.  Thanks, Nancy

johnsli:
Heh Nancy,

I was just at the dr last week.  He stated that alot of people call them brain tumors.  They are benign tumors in the inner ear canal.
What makes them so much of a PITA is that they are in bone.  Brain tumors usually will grow in the brain and overtake it.  AN are in bone, so there is not much room for them to grow.  That is why they are so bad.  I am also in a wait and watch mode.  My AN is 2cm by 1.7 cm.  I was really surprised that he said to wait.  My next MRI is on 6/20/07.  If my symptoms worsen or something drastically changes within that time or after, I need to contact him right away.  I know what you are saying about hearing.  My 10 year old has a very bad habit of trying to talk to me from the top of the stairs.  I tell her to come down, I can't hear her.  I try to be patient, because she is very scared right now.  Her life is drastically changed right now.  My husband was hurt 7 years ago, and he is just now trying to get back to work.  So she is scared because I am not well, and her dad is going back to work.  She wants to know who will be taking care of her this summer.  I told her not to worry.  She will come with me a couple of days a week to my work and her grammies for some of the time.  Also, her best friends mom will be taking her at least one day a week.  It will all work out.  We will all survive.  My blessings to you.

LOL
Laura

Boppie:
When I was first diagnosed I called my girlfriends together and told them flat out that I had a benign tumor on my hearing nerve in my head, that I was having it surgically removed, and that I was not going to die from the tumor or the surgery.  That was that!  I also, told them they'd probably never have this type of tumor but that one sided hearing loss must be investigated in anyone they loved.

We have a saying...once in a while you run into somebody who deserves to know you have or had a brain tumor.  It works! ;D

Technically it is a brain tumor.  But I agree it is kinder and sometimes self expanatory to most people if you say "benign tumor on the hearing nerve" (acoustic neuroma)

Some patients of the surgical approach say they had 'brain surgery'.

Mark:
Nancy,

If I recall, the board had a lively discussion on this issue many months ago. I had always maintained that an AN is a cranial, not a Brain tumor since it sits in the head but never invades the Brain itself. After many folks offered numerous opinions, I think Dr. Spunberg closed the issue by explaining that in medical school Docs are taught that the cranial nerves are an extension of the Brain, so since the AN is attached to a cranial nerve, it is a brain tumor.

That being said, the consensus of the group was that you could give it any name you want with the favorite if I remember correctly being "booger"  ;D

Mark

Nancy Drew:
Interesting thoughts all.  I think it will work best for me to just say "Can you please speak up? I have problems hearing."  It's true, and maybe that is all the average Joe in my life needs to know.  With my friends and family I guess it is just best to give them more facts so they will be more understanding when I ask them to speak up.  I don't think most people are aware of what an AN is.  I've even had some doctors (like my orthopedist and dentist) say, "What is that?"  So, it is that "thing in my ear" once I tell the friends and family what the AN is.  I guess everyone has to do their own "thing" when it comes to dealing with their AN.  At least we all know what it is (for the most part) in this forum.  Best wishes to all.

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