Hi all - thanks for your words and thoughts!!! Also some questions....

[Monie]

  Hi everyone (especially those of you who replied to my first post - much appreciated!!!)
I hope you all had a great Christmas and New Year - 2007 is sure to better!!!
I have a few more questions (reading your words REALLY HELPS to keep my nerves and anxiety (and depression I must confess) at bay...
I am wondering what it is that we all might have in common on a physiological or lifestyle level that makes us the lucky ones to get ANs??? So I thought I would ask the following:
Did/do any of you:
1. Smoke
2. Drink
3. Have experience with other benign tumors? (I for example have had one removed from inside the bone of my ring finger and also from my thyroid)
4. Experience high level stress on a daily basis (prior to diagnosis) which was work related
5. Do a lot of flying ( I have done many flights over the last 5 years for work)

I know this may be a bit intrusive but I figured it was worth asking - I really want to get a picture in my mind that is it just bad luck and not my fault. My family has had a really crappy time for the past two years...my father-in-law died from a glioma (type of brain tumor), I had half my thyroid removed (had a tumor), each of my two children broke their wrists (would you believe!!!) on each of their birthdays (odds on that?), my dog died last Christmas morning, my daughter swallowed a dollar coin at school and had to have emergency surgery to remove it, my husband had two surgeries on his mouth to remove very scary cancer, and then, just when I thought everything was getting better, I start to go deaf, get roaring tinnitus and find out I have an AN - which I tell my supposedly sympathetic boss only to be made redundant TWO WEEKS LATER (surely a coincidence...LOL!!!! )PHEW - makes me tired just thinking about it all!!!!
ANYHOW, I am SURE SURE SURE that 2007 will be infinitely better 
You know, my computer has been down for a while and I haven't been reading all your posts (just picked you up again yesterday) and it is really is amazing the effect you guys have on my psyche - from helping me to realise that the world is not over to forcing me to accept this situation and try to get on with it as best as possible.
Love to hear from you guys - I will hang around the computer and wait!!!
Cheers all - here's to a brighter day soon!
Monie

[matti]

Monie - Reading through the past few years of your life, felt like a chapter from my own. We went through a 3 year stretch where one thing after another happened to us from 3 deaths in the family to my husband having several major surgery's in a year and half (almost losing him) and then just as he is fully recovered, I was diagnosed with an AN and had surgery 6 days later. It got so that I was scared to get out of bed every morning in fear of what would be happening next :(   We, like you got through it, but YIKES what a journey. 

To answer your questions:

Smoke: No
Drink: on occasion
Benign tumors:  Breast, foot and uterine
Stress: YES!!!
Flying: no

Hang in there Monie, it will get better...I promise :) 

hugs,
Cheryl

[Boppie]

Monie, I have a benign hemangioma inside my liver which we have been monitoring for 10 years.  It is golf ball size and just resides there occupying a space with its own blood vessels.  I wait and watch.  Doctor says there is not a relationship between this tumor and the AN.  In particular the mass "could be related to HRT" which I used for 8 years.  My fault?  Well, I guess, if I choose to worry about it.  But I don't.

Yes, it will be okay for you.  Even though our AN's are rare, we are lucky to have so much information to plug into. 

Wait and watch seems reasonable especially in light of a small tumor size and the presence of some hearing.  Any hearing at all is worth using for now, especially for finding direction of sound.  I am sure you are busy with bringing and fetching your children for daily activity.  Your hearing is worth keeping for now even though it will become more compromised until you have to do something.  Just remember, you will be alright.  Eventually, you can get treatment and will return to your mom duties.

[Monie]

Thank you Boppie and Cheryl - once again I have come to the computer in tears (this machine is steadily becoming my rock) and your words have given me comfort. I am having a particularly bad afternoon - had been having a little nap for 20 mins or so and came to with thte dreaded spins - you know, like the whole world is moving and I can't get my eyes to make sense of it all...I find this particular 'side-effect' of the AN most distressing. It has been happening with more frequency these past few days...I wonder whether this will ultimately force me to have the surgery sooner rather than later... I just want, more than anything in this worl, to be me again - I have always been a 'go go go' type of person...when everyone else is sleeping I am busy doing, so to speak. Now I am finding it difficult to play with my kids, stay on top of things, etc etc... It is not for lack of will - I force myself everyday to keep going but I ache for the freedom of good health and mental happiness that I took for granted just a short few months ago. And no matter how hard I push I always end my day in tears wishing and wishing that I could 'come back' from wherever it is I have gone (if that makes sense)
I am very fortunate that my husband, mum and stepdad are all so lovely and care so much - I truly would give up without them. My husband's family are another question...I guess with all they went through last year with Pete's dad dying has toughened them a little - they don't really seem to care about what is happening with me. In fact, Pete's sister said to me (and I quote), 'Well, if Dad could go through what he went through then we can all do it." Not so nice but there you go!
Anyhow, enough miseries - thanks so much for listening and being just the right kind of friends - I really appreciate it 

[Lorenzo]

Hi Monie,

I feel for you, I stilll remmemmber what it was like for the first months after diagnosis. For me the first three months were the worst. Frantic in fact. Not knowing was the worst aspect of it all. But things settle, they really do. Hard to imagine right now I'm sure, but they will.

Thankfully  the vertigo I had was only short lived and a few years before the diagnosis. Thing  about it it'll settle, or it should anyway. Once your brain adjust to the impaired balance, all will return to 'normal'. Sure  hope so, it isn't a nice t to have from the AN.

As for support, yes, it isn't easy to realise that people that should be close and caring, are either careless, or just as scared, or find it hard to think of a right thing to say. My entire family offered no support at all, friends vanished... Only support I got was from my partner and from friends on AN boards. One thing I would say about this, it is very difficult for anybody to understand. I know that people should be supportive anyway, unconditionally. But often the easiest option for them is to say 'get on with it'. I'm not sure how you can deal with that, other than finding support where you can get it and rely on that.

It is difficult to be yourself with something like this on your mind all the time. The best you can do right now is go with it, think about it as much as you need to, think about yourself, ask for help with everything else, find out as much as you need to find out. Soon you'll find that the 'frantic' stage will give way to a more relaxed pace, things will be a bit more 'normal'. If you're a  go go person, that'll serve you well with this. It's the kind of attitude to have with this kind of situation. I have no doubt whatsoever that you will find your way of being again, just give yourself the time to do it.

Now, for your questions:
1. Smoke: Never, not my own smoke anyway, other people's yes.
2. Drink: glass of wine most days
3. Have experience with other benign tumors? No.
4. Experience high level stress on a daily basis: yes. particularly 15 years ago when this AN started to grow I would think.
5. Do a lot of flying: No, maybe once or twice a year

I hope any of this helps. Know that you're not alone in this, we all had our own sets of fears and worries and panics. We may be all different, but at least we know what we all have to go through.

Keep your go go attitude, it is still there! By being here it shows me that you have the initiative!

Ciao,

Lorenzo

[Monie]

Lorenzo - it is just amazing how I feel that I can know you although we've not met...in fact that goes for so many of you!!!! I think it must be our unique situation and the fact that at the start you believe yourself to be so incredibly alone...lo and behold you find this special place where so many of your own fears are echoed and there are beautiful (and most importantly REAL) people with the same problems, hopes, disappointments and triumphs 
I truly, truly hope that one day I can be one of the people who can allay the fears of someone else when they feel all is lost - that I might provide that little gem of comfort that makes the day more bearable. In the meantime, I thank you for taking the time and effort to speak with me - it means more than I can say 
Ciao to you, Lorenzo

[Lorenzo]

HI Monie,  In fact, you are already are helping others now by being here and talking about your situation! This is a great community and we all have something to contribute. I'm glad I can share my experience with others and if it helps somebody, like you, then it makes all this saga worth while. I'm glad I can speak with you and others, helps me too.
Ciao, Lorenzo

[Boppie]

Monie, No guilt can be associated with the AN in your head.  As you have read in this thread, the "why me?" question looms into our minds whenever bad things happen.  But none of us plans nor expects illness from living ordinary lives.  ANs just happen. 

I found that praying for courage and strength gets me through my days.  In fact, my own strenths spill over onto family members and friends.  You are getting stronger already by just researching and sharing your thoughts about the tumor. 

You will find one strong advice line here...find a caring, and experienced doctor.  If you already have chosen one, you are on your way.  Wait and watch is not so dangerous as we imagine.  Remember, it is a benign, space occupying mass. 

Nay sayers and critiques will be amazed at how well you are handling yourself.  You can control how and when you get treatment.  All AN patients are heroes.

My son and his wife brought four year old twins to the hospital for a visit after my surgery.  The four of them were curious and impressed with the idea that Boppie just had her "owie" fixed.  I was so thrilled that they understood I was safe and only temporarily down.

[Jim Scott]

I believe that AN's are genetic and have little relation to 'lifestyle' as they were first diagnosed over 100 years ago, when the world was a different place and much less complicated and stressful than it is for most of us, today. 

However, I'm game to answer questions if it may help you in some way.  Here goes:

Did/do any of you:

1. Smoke
2. Drink
3. Have experience with other benign tumors? (I for example have had one removed from inside the bone of my ring finger and also from my thyroid)
4. Experience high level stress on a daily basis (prior to diagnosis) which was work related
5. Do a lot of flying ( I have done many flights over the last 5 years for work)

1. Quit a 30-year habit in 1989.  Never looked back.  It was relatively easy, but I was extremely determined.

2. Very little - and not very often.

3. No other benign tumors that I am aware of.

4. Used to have stress but I've 'mellowed' in recent years and I'm retired.  That helps a lot.

5.  Minimal flying - except as a passenger in my friends light plane once in awhile.  I only fly commercially on rare occasions.

While I personally doubt any of the above issues (smoking, drinking, flying, stress or other benign tumors) have any relation to our Acoustic Neuroma tumors, it doesn't hurt to do some ad hoc online  research.  Finding a provable cause for AN's (and using that knowledge to prevent them from forming) would be wonderful.  I am not overly optimistic that will happen - but it may.  Good luck.


Jim[/color]

[mellowrama]

Hello all,

I recall someone else posted something similair to this earlier this year...so it may be worth seeing those results.  To me, there doesn't seem to be any obvious connection as to why someone gets an AN...in fact, it seems like a lot of ANers are above average in athletics, etc.  I kinda think it has to do with growth hormones in foods, and perhaps a combination of head trauma...but I'm no doctor!

Yes, I've smoked in the past
2.Yes to drink
3. No problems with tumors, but seem to have agressive scarring...
4. yes to stress
5. average flying.

melinda