How do I look??

[mrgarlic]

Greetngs to all and to      CWOOD,,,,,,,Amen Amen and Amen.     I didn't expect this much response. Some post's were all about what to call "our condidion" And I for one try to go for rhe easiest to describe. A tumor is a tumor, weather it is in or on my brain. Why get legalistic?
I am a guy, so gory is OK. My scar's are my measure of my life. Maybe I should have said   "How should  I look?" It is our attitude that is throwing people for a loop. I for one am very positive about this surgery. I may lose good use of my eye, I may have a numb face, BUT guess what ? I am going to live and I will make the most of what I end up with. Are we expected to go around looking sad and teary eyed? I refuse to do that. Jesus lives in heart and he ain't sad.    Larry

[lori67]

Larry,

If you really want to freak people out, maybe you can hit up the Halloween stores (everything's half price now) and get some gory costume pieces, some fake blood - maybe a brain in a jar....then maybe they'd believe you when you said you had a brain tumor!     I didn't know there was a certain way we were supposed to look - someone should have told us!

And Wendy, technically, AN's are not brain tumors because they do not arise from brain cells, they arise from the Schwann cells that "insulate" the Cranial neves, and since these are found in the brain, that's where the brain tumor description came from.  It's probably a lot easier to tell people you have a benign brain tumor than telling them you have a benign Schwann cell tumor.  I'm guessing you might have to go into a little more detail on that.  And since they sawed my skull open and dug around in my brain, I have no problem referring to it as a brain tumor!   

Lori

[Pembo]

Wait until after your surgery and people ask how you are and you say you're doing just ok and they tell you you look good. My face was half frozen, I don't know who they were looking at it, but I wouldn't say I looked good, different maybe, not good.

[wendysig]

Hi Lori,
Yes, I did know that ANs arise from the schwann cells, and actually  I believe the technically correct name is vestibular schwannoma  .  I have no problem calling my AN a benign brain tumor for the very reasons as you and everyone else.  Also after I wrote my last post, just out of curiosity I looked at the statements I got from Aetna regarding my surgery and the doctors' percertification.  My neurosurgeon called my AN a brain tumor and my neurotologist called it a brain lesion (same thing really) so if they call them brain tumors apparently, although it is technically incorrect, it is commonly referred to as a brain tumor, even by most of the experts.

As for how I look, yes, I look  fine and for the most part, I am  -- I am very thankful that I don't have facial paralysis and I feel very fortunate.  Because of that people assume everything will be " normal" again for me.  My balance issues are improving but are still here -- but I am deaf in one ear now, like many of you.  BAHA will help that but not cure it.  Sometimes, it annoys me that other people don't see that.  Being SSD is not nothing -- I usually have a very positive outlook, but this has changed my life, in some ways for the better, but being SSD is not something I would choose.  So yes, I look fine but I have a new "normal" to adjust to.

Wendy

[vjgfamily]

Yep, it's bad juju to have a brain tumor (or whatever you want to call the invader).  I can't say the last 20 years have been fun.  How could you, with the inconvenient aftermath?  But, I know that I'm alive, and I'm living a life that I wouldn't trade for anything.  You can, too.   

Live it.

Verl

[hannie]

My ENT first told me about my AN by saying 'do you mind if i use the term brain tumour?' !! this came as a bit of a shock after being reassured that it was highly unlikely that my MRI would show anything abnormal.

Brain tumour is the easiest term to use by far. I've found that the people i've told about my AN tend to say 'why are you still working? you should be resting.'  I wish!!  I think i'm trying to act as normal and not let the AN interfere in my life too much. Taking time off would only let me dwell on it and get me down i think. I'm working on getting the 'half full' attitude, i think i have it most of the time but sometimes its easy to focus on the negative.

Hannie

[tenai98]

Hannie
I hear what you mean when you say if not kept busy one tends to dwell on the fact that a tumor resides in our brain...I know that when I'm not working and my mind is idle, it tends to wonder over to Booger.  Day in and day out.  And because of this, I have decided to have it removed.  I'm hoping sometime in the spring.  After my vacations...
JO

[hannie]

Hey Jo

Looks like we have exactly the same plan then. I'm hoping to have my tumour removed in the spring too. I've got to wait for the NHS thought so who knows when i'll actually wave goodbye to the booger. Hopefully it'll give me some peace of mind when i do!
I'm inspired by how positive everyone here is despite experiencing considerable pain and changes to your life.

Anne-Marie I hope the headaches get better with time

Hannie

[robynabc]

These are interesting reactions.  Before my son had his surgery we only told a few people because I didn't want any pity.  It affected my ability to stay positive.  But, ,Eric had a very large one on his brainstem and it was serious.  We were sober and told people it was serious, it was because of the size. 

After surgery Eric doesn't like telling people unless he has to.  He will tell people if they need to know about his hearing or because he has those coughing fits,  which are getting better.  When he had no voice we had to tell everyone and it wasn't pleasant for him. 

[cherrypiper]

i heard an eye surgeon say at out local ANA meeting

"AN's are one of those you dont need to do it surgeries. You can always wait another year or two"

whew........ the truth is i got the data. there was something in my head, hearing was gone, age wasnt getting younger, insurance was helpful,

when i explained what was going on most were supportive and helpful. those that werent well so be it.....

i told my coworkers because i would be off last week of school and a replacement teacher was needed.....

[kmancini]

WhenI went to the ENT doctor after I was diagnosed with AN he didn't say anything about brain surgery.  Wo I was very calm and a little scared about it.  Then I had to go see the neaurosurgen that worked with that doctor and he said he was not going to surgar coat it this is major brain surgery.  That did me in after that.  The surgery went better then I expected except I have had 4 surgeries after for CSF leaks  because of my porous anatomy up there.

Karen