only found out last week, surgery 9th Nov 2007

[cheza]

Hi to all,

I'm new on this site, but am I glad I found it!
I'm from England and I was Only disgnosed last thursday, my op is on 9th November my AN is 3ish cm.

I had so many questions, they all seem to have been answered just by reading through some of the topics, I feel like I'm on a rollercoaster I've been told so much in the space of a week, think my head might explode.
On Sunday I broke, I cried uncontrolably, Nothing in particular set me off, just folding some washing, getting the kids school stuff ready and that was it one small tear turned into many, my husband, bless him, thought there was something wrong, you know just one thing, but the problem was there was a hundered things wrong and none I could just pin point, he held me for a while whilst I just fell apart, I love him for being there for me, I just wish everyone else would understand that I don't want to talk about it all the time, I don't want sympathy from people I just want to be treated as normal its hard enough without being reminded that I have a major op coming up in 4 weeks time, plus how insensitive can some people be? I was at work trying to forget whats going on and a woman I hardley ever speak to just waltzed over and said "Oh god Cheryl are you alright someone told me you have a brain tumour"
I mean, Hello! who in there right mind would say that?

Any way getting back to the AN I have symptoms but I had them months before I was diagnosed, I just never thought I had something so serious, I lost some hearing in my left ear, I have persistant headache's, a dry mouth,  a sore tounge and finally some dizzy spells and some very clumsy moments walking into doors, walls etc.....

I just wanted to say all that, not to anyone I know, I just had to say it!
Hope to share my experiences with you, Cheryl XxX 

[Lorenzo]

HI Cheryl

Good that you came here to vent. Might as well, we tend to just be around if needed and listen without making stupid comments. Mostly. Sometime I tend to go off on a tangent...

Glad your husband is the way he is, that's a great starting point, you will need his support most of all. Others, well... let them. You know, the conclusion I came to in the end is that mostly it's their problem, not ours. THEY are the ones that are insensitive, scared to death, insincere, clueless, with no empathy and without a shred of humanity. A lot are like that. Not all mind you, but a big chunk of 'friends' can be. This AN thing has a tendency to show us people in a different light. I stopped a long time ago paying attention or expecting anything from 'friends'. The best I ever did was to come here and find this bunch, never been as close and understood in my life! Also, it must be said, I think most people just don't know what to say! They feel they need to say something, but it would be better to just be quiet and ask simply 'how are you?'.

Now, we'll all be be here to hear how you get on!

Ciao, Lorenzo


PS: I just live across the Irish sea, by the way. Welcome, neighbour! 

[mojo]

Cheryl, please quit peeking through my curtains!

Last night a friend was taking me to a meeting, and we were picking up another friend.  Of course, even though I'd given first friend directions, he either forgot or ignored them, and since I was having an episode of mind-mud, I wasn't much help.

By the time we found second friend, I was on the verge of a crying jag.  Then we hit traffic, which just made it worse.  My only saving grace is that I'd put on some mascara, and didn't want to go into the meeting looking like a deranged clown.

Also, let me second what Lorenzo said.  Too often we're all awkward in scary situations.  I've only been here since Tuesday, but I feel like I've found a home to vent, to breathe sighs of relief and to track my progress without boring the heck out of people. 

Welcome!  Feel free to PM me if you feel the need, want to scream, or laugh.  Are you in England, or a transplant to the US? 

[Boppie]

Welcome Cheryl.  We are all about supporting, sharing, and venting.  Keep on talking into the keyboard.  I have been right where you are.  You and your life will get through and come out strong!

My approach was to become proactive and tell everybody around me about the tumor that I was going to go after.  We told the three year olds I had a boo-boo in my ear.    I took control and others didn't need to do a thing but listen.  We are all the same.  The folks who say clumsy things are just lost for words, and they don't understand the science of an AN.

It helps to get it out here amongst fellow Posties and Newbies.

[Lorenzo]

oh, and another thing, I found I used to tell everybody. By the time I got the fourth glazed look from people, I stopped. Frankly, a lot of them don't want to know. At least not here. Then again, the irish are different than others, ignore and it will go away. Also, young people are far less empathic than older, in generic terms. I know, I know, generalising is a bad thing...

Ciao, Lorenzo

[cheza]

Thanks guys, you are all really understanding and your right this is the best palce to let of that steam, I dont want to bore others with it and it seems on here everyone knows that, plus its really great to find other people with the same point of views and problems no matter how trivial. and by the way I'm English born and bread, My mum is Irish though, shes a Belfast girl.

my op is at Hope hospital in Manchester England with prof Ramsdon and neurologist Doc Rotherford I haven't met my Neurologist yet, but will keep posting updates.
I know it's going to be within the next couple of weeks, Prof Ramsdon wants me in ASAP he's worried about the facial nerve, the tumour is pushing up underneath it and when I saw the scan pics, well, seeing my brain being squished in the way it is, is a sight I don't think I'll ever forget, I just wish I had of Known what the symptoms were when I first experienced them over 18 months ago, I'm not one for complaining or going to the Doctors I'm only 30 I shouldn't be ill or have numerous things wrong with me, thing is I don't have numerous things wrong with me just one I just didn't know it, one thing I'm learning, LISTEN TO YOUR BODY!

I'm feeling alot better each day, the week didn't stat off to well but, I'm coming to terms with my tumour!  That sounds quite good
Could be a new slogan

Take care guy's Cheza XxX
 

[Jim Scott]

Hi, Cheryl/cheza:

Although it unfortunately means that you have an acoustic neuroma tumor, I'm so glad you discovered this website and forum, as it is a 'safe place' where just about everyone that posts has (or had) an AN and has first-hand knowledge of the stress, anxiety and fears of a newly-diagnosed, pre-op AN patient, the rigors of recovery to full function and the challenges we face along the way. 

You can receive lots of information from the various areas of the ANA website and practical advice here, as well as empathy and a place to 'vent', when necessary...and it will occasionally be necessary to do that. 

Your husband sounds like a good guy and I trust he'll remain your stalwart advocate through this experience.  You'll need him.  Having an AN isn't necessarily life-threatening (it could be if not addressed) but it is life-altering.  How much so depends on a variety of factors, including placement and size of the tumor, your surgeon's skill, your overall health and mental attitude and how your body reacts to the surgery.   From what you've posted, I believe you'll do fine, even if you encounter some post-op challenges, which may not happen.  Every AN case and surgery is a bit different.  One size does not fit all.

Insensitive friends, acquaintances and co-workers asking stupid questions and/or making dumb remarks is all too common.  They just don't know any better.  I was fortunate in that most of my friends just kept asking me 'how are you?'  A few were curious about what kind of brain tumor I had but when I explained that it was benign, they seemed to accept that and simply remarked about how well I seemed, post-op. I let it go at that . 16 months later, my AN is almost forgotten by most of my friends, if not by me or my family.  I trust that you'll have the same experience.

Feel free to post, to vent, to ask questions.  That is the point and purpose of this forum, Cheryl.  I'm sorry you have to be here but, that understood, its nice to have you with us.  Come back often.

Jim

[Yvette]

Welcome Cheyrl, we're here for you! Your hubby is the most important though. Stay close to him. You are the new kid on the block and we want to know how everything goes-keep us posted! We've all gone before you and are here to answer questions or just listen, so sign in often. I had my 3cm AN removed translab style at the Mayo Clinic last January. I'm doin' great, have SSD and some mild symptoms that get better every month, but life is good. God bless, Yvette

[cheza]

hi yevett

tell me what is ssd

[Yvette]

Hey girl! SSD stands for single-sided deafness. It is an unfortunate necessity with the translab surgery. They had to go through my inner ear to get to the tumor. The doctors said they could pretty much promise me no facial paralysis with this type of surgery, but I'd lose my hearing. A different approach (middle fossa, I think) might have saved some hearing, but they felt that my facial nerves might be more at risk using this procedure. In the way that you need two eyes for depth perception, you need two ears to tell where sounds are coming from, so SSD has taken some getting used to. Doing better every month though! I use my eyes more, have night lights everywhere, but still jump when someone walks up to me. I can't hear the approach until they're right next to me. It's like being on the Bewitched show! hahaha Yvette

[kat]

Hi Cheryl

Welcome to the club but sorry that you had to join . You will find plenty of support and understanding on this site from persons who know exactly what you are going through . Allthough my choice was GK due to the fact that my AN was only  2.2cm my first appointment was with Prof Ramsdens team in Manchester and at the time I thought that if I ever needed surgery Prof Ramsden
would be my first choice because he is one of the most experienced AN surgeons in the UK . I am sure that you will be in good hands.

Have you visited the Uk site www.bana-uk.com where you will find many British people who have had surgery in the UK .

Wishing you the very best of luck with your OP

Regards Kat


 

[cheza]

Hi Kat,

Thanks for your kind words and yes I agree Prof Ramsden is one of the best or so I have been told quite a few times now, not only that but he's scottish and a scottish acsent seems to calm a situation down stright away, he seems very kind, he and his team really seem to care.

I recived my addmission letter from Hope hospital today, just makes things all the more real each time something comes through the post or I recive a phone call, mind you with all the strikes I'm suprised anything is coming through the post, ha ha.

I must admit I am starting to feel better and stronger everyday, everyone on here seem so posivte and that really helps, so thank you to everyone with all your words of hope encougement and faith.

Speak soon Cheza. XxX   

[ppearl214]

Hi cheza and welcome. Got me a bloke from SE London (Herne Hill) with family in Shaftesbury-Dorset!  Haven't been to Manchester yet as my next trip over, I hope to do Leeds to find member's of my grandmother's family!

Good to see you here and glad you found us... as you can see, everyone is warm and inviting, knowledgeable and filled with heart.  if you have any questions about the site, just let me or JoeF (or anyone else) know... we're glad to help.

Again, welcome!

Cheers!
Phyl

[Joef]

Welcome cheza     

* seems like we are getting a lot of new people lately ! glad people are finding thier way here.. its a great and friendly place to learn all the in's and out's of what AN means *

I known what you mean Lorenzo ... I started to tell people it was a tumor behind the ear.. I never whould say Brain and Tumor in the same sentence 

[Charlotte Lady]

Cheryl,
It's funny how different people handle things differently.  I"m big on denial.  I refused to take this as a serious situation/operation.  I focused on my future expensive and bad haircut.  The people I worked with helped by kidding around about what sort of hair cut I could get post op, various hats, caps, etc.  That got me safely through the two months of waiting for surgery without much thought of the surgery itself.  Like you, I did have some boo hoo days.  It's normal.  It's no fun having to have surgery no matter what it's for. 
When I started discussing it at work I told the people they were free to talk about it to others; it was no big secret, but that I didn't really want others to bring it up to me.  Almost everyone respected that.

I"m five weeks post op, doing well.  I'm deaf in one ear but my balance is coming back and although I have some facial paralysis, it's not too bad.   I mostly just make fun of it and my limitations.  No one expects you to be Superwoman.

Donna