DO's and DONT's with having an Acoutsic Neuroma (newbie)

[Migoi]

Steve...thanks, for the kind words and for clarifying the correct title. Those words were probably in my brain somewhere but for some reason I just couldn't find them. They were apparently well hidden in some far corner.

Clarice.. thanks for the kind words.

As I hear and read about more and more AN stories, two things stand out.... one is the huge percent of people that seemed to be misdiagnosed for a long period of time before the AN is found to be the true cause of their symptoms. The other is often incredibly insensitive ways that folks find out they have something growing on the edge of their brain.

You would think that more ENT's would understand that being told you have a brain tumor kind be just a tiny bit upsetting.

..take care... tim b

[leapyrtwins]

Great list of do's and don'ts, Tim.

Very helpful.

Jan

[kenneth_k]

Hi Mark.

A whole lot of insight and advice has been offered allready. I simply want welcome you to the forum, offer my sympathy, and perhaps later try to chime in and answer any additional questions. There are no silly questions, just insensitive answers

Regards, Kenneth

[MissMolly]

I welcome you as well, Kenneth.  I never did like roller coasters and always got carsick as a kid.  Making me wonder if this AN has been in my head for the past 45-50 years.     Good luck and keep in touch with this group.  It's extremely helpful.

Miss Molly

[shameless_stud]

Can I just say that I'm really touched with everyone's kind words and support. First of all, most forums online treat newbies like...well, not very nice at all! And second of all, I didn't think so many people were in the same boat as me. It's re-assuring to know that I can lead a normal life (albeit a hard and painful journey) bit I suppose life would be boring otherwise!

Thanks again everyone, I'll think of you all when I'm up in the air going 100 mph on Saturday! haha.

Cheers,
Mark x

[ppearl214]

I'll think of you all when I'm up in the air going 100 mph on Saturday! haha.

Just scream REAL LOUD in my honour, ok?   Have a terrific time!
Phyl

[Jim Scott]

Mark~

FWIW: I visited Disney World® at Orlando, Florida last year with family members.  I rode Space Mountain, Test Track (3 times) and some other fast rides - with no problem (and no screaming).  I also walked what seemed like about 10 miles a day in the heat and humidity of Florida in the summer.  I was 65 at the time and 2 years post op/post radiation.  Although I'm fit, I'm not exactly the athletic type.  I'm sure you'll be fine.  Enjoy! 

Jim

[leapyrtwins]

I didn't think so many people were in the same boat as me. It's re-assuring to know that I can lead a normal life (albeit a hard and painful journey) bit I suppose life would be boring otherwise!

It's a fairly big boat - and seems to get bigger every day   

I can't speak for everyone, but personally I love newbies and wish I had found this forum while I still was one.  There's just something about being able to connect with others who've "been there, done that" before you.  By the time I found the ANA and the forum, I'd already had my surgery and I was a postie.

Everyone's AN journey is different, and while mine was hard at times, it wasn't really painful.  No headaches pre or post-op, no post-op pain, etc.   Not bragging; just wanted to point out that your journey will be unique, but not necessarily full of pain.  So don't stress about it.  Just take things as they come and you'll be fine.

Jan

[Lainie181818]

Hi Mark, welcome to the club. as a fellow Brit I just wanted to say hi. I was actually staying at the Palace hotel in Manchester a few months ago, and was born in Ormskirk. I had AN surgery 3 years ago so I am pretty used to life post AN. I was devastated too after my diagnosis, I think that is pretty normal. Thanks to my sense of humour [I'm spelling it the English way] I got through it. Northerners are known for their humour so you will be fine. If you find yourself in LA you will find a great support system waiting for you. Nancy is our wonderful tour operator, david is our Hollywood star, and I am just your transplanted Brit. So keep the questions coming.
Lainie.
PS My Dad was a pro soccer player for Everton, so I will forgive you if you support Man United.

[Keeping Up]

One more welcome

I am a 6 month old newbie, 37 years old (so somewhat young) with a tiny asymptomatic tumor (OK - my hearing is diminished (hearing update tomorrow with the ENT), it rings constantly and I have these truly weird balance issues intermittently).  I am thankful the tumor is so small and asymptomatic, and don't need treatment.  I am thankful my ENT is a guru in conservative management (and also my age).  I am thankful I have four little children - my eldest turned 7 in May, and my baby turned 2 yesterday.  I am truly thankful this tumor is benign. 

As you might have guessed, I am a bit-over-the-top positive.  I would go to Disney in a heartbeat and ride on any roller coaster possible.  My daughter hates the tea cups so maybe I would avoid that one. 

In my opinion, on the whole spectrum of devastating, this isn't it.  This is a minor bump in the road.  I will have the tumor treated as required, when recommended by the medical team.  I have settled on surgery because I trust my ENT more than I trust the radiation oncologist (that 'gut' feeling).  My anti-radiation feelings feelings have diminished a lot over the past few months - just think I know where I am more comfortable with the long-term consequences of either treatment option.  However, I freely reserve the right to change my mind at any time. 

In the mean time, I am living a darn near perfect life and I won't let one moment of that pass me by.

Ann