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

[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!

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" 

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.

[Jim Scott]

Outside of this forum, I don't advertise the fact that I had an acoustic neuroma tumor because my friends already know about it and it's no longer relevant to 'new' people I meet.  My 'AN experience' will always be a part of my medical and personal history, for sure, but it isn't necessarily a part of my daily conversation.  If the subject comes up, yes, I always refer to my AN as a 'brain tumor' as I believe that is an accurate term.  To those who care, I explain the details, later.  Few ask.  Works for me. 

Jim

[krbonner]

As a post-op patient with SSD, I often need to tell people I'm "deaf on one side" and could they please speak up/move to the other side/etc.  I rarely offer an explanation to people who don't know by now.  Most are too polite to ask how/why I'm partially deaf.  For the few times I need to say more but don't want to offer details, I just say I had a benign tumor and it took my hearing on that side. 

When discussing my surgery, I usually call it "skull surgery".  That doesn't seem to have the same dire connotations that "brain surgery" has.  Yes, they cut open my skull; but no, they didn't really mess around inside my brain.     I think I still freak a little when thinking about "brain surgery" so I feel better if that's not how I label what I had done to me!  LOL!

(If that made any sense at all...)

Katie

[Derek]

I am very happy to say that I do NOT have a brain tumour as my insurance cover does not include treatment of brain tumours but does include all treatment options for acoustic neuromas!

Derek

[amymeri]

I say Brain Tumor because people don't understand Acoustic Neuroma.  I do end up explaining relatively frequently because of my facial paralysis.

I also say it as a joke to get someone  to do something or excuse something silly I have done.  I think a little humor lightens the mood a bit.

I believe it is a brain tumor (medically speaking) and that is certainly affects my brain in many ways.  My surgery was also brain surgery that required cutting out parts of my brain and pushing my brain around quite a bit.  Yuck.

Having said that...in general I prefer not to talk about it because I am tired of this experience and I have to live with it all the time...so talking about it just makes it worse.

[ppearl214]

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" 

Mark, you stole my term!  I like the name of my AN!

Regarding the "booger" in my head, as amymeri notes, when I try to explain that I have an AN, folks don't understand and I have to go into an elaborate explanation as to what it is.  Sometimes it is easier to just note it as a brain tumor.  I understand Dr. Spunberg's explanation (as Mark noted) as to what it is and thus, use that when explaning to others.  Since it's inside the skull yet, it doesn't penetrate the brain itself, for me, I still deem it as a brain tumor as it can still affect critical structures affilliated with the brain (ie: if it grows to big and it's affect on the brainstem, how treatments can affect functions such as hearing/facial function, etc).  As my "booger" has become a daily part of my life (being a moderator here on this site, brain tumor fundraising, organizing brunches and having had a sister that died of brain cancer, etc), I don't let it rule it.  I have no issue sharing with others that I have a brain booger but, in my case, I do the best I can living with it and sharing with those around me. 

I didn't have enough coffee yet.... sorry if that all sounded confusing.

Phyl

[tony]

Sorry to muddy the waters here
- its also known as a "lower skull base tumour"
and sometimes a " pain in the a--- ?"
best regards
tony

[RED in Palacios]

As a "newbie" who doesn't have any other excuse, I refer to mine as an acoustic neuroma.  If anyone asks, I usually offer: it is a type of benign brain tumor that originated in or on my auditory nerve.  I have actually had a few sincere folks who really did want to know more and I tried to share with them as much as they could handle.  I have tried to select a name for my AN since we are going to be so close for the forseeable future but nothing I have come up wth has seemed to work.  I'm still working on it and am sure I will come up with something. 

Richard   

[Betsy]

It was first explained to me as an overproduction of cells surrounding the nerves that affect hearing and balance, and that's what I told my 78 year old mother.  I try not to use the T word around her.

At work, it's a brain tumor.  I find the FMLA and workplace accomodation folks are a bit more cooperative when I don't try to minimize it.

When I'm in the grocery store and I feel a little off balance...enough for people to notice and think I'm drunk....I say I've got an inner ear problem.

When I'm alone and freaking out, it's brain tumor.  But when I'm in control, it's a bump in the road.

I thought about naming my AN too, but I don't want to give it any more power than it already has!

Betsy

[kss4luck]

I've wondered the same thing, I'm just grateful it's gone. Still miss my hearing though

[Crazycat]

I see it this way:

 I had an enormous growth that not only deafened me in my left ear, but wrought other collateral damge within my cranium. The growth was so big it blocked the flow of CSF in my cranium, causing "hydrocephalus and compounding my equilibrium problems; it was so big that it impinged on the cerebellum, causing brain compression or what is referred to as "cerebellar retraction", causing stroke-like symptoms on my left-side. I had written about this in an earlier post entitled "Cerebellar Retraction and Handwriting Difficulties". I'm walking aroung with a shunt embedded in my cranium and a titanium mesh in the backside of my skull. Granted, the growth is located at the skull base but the skull had to be drilled through for it to be accessed. I had a brain tumor. It could have been worse no doubt but a brain tumor it was nonetheless.

    Paul