Introducing myself...

[Angie UK]

Good morning/afternoon/evening everyone.

I am Angie, I am 42 & l am from the UK.  I was diagnosed last May, & have been on the waiting list for surgery since August 2010. My AN isnt huge (10mm x 10mm ) - apologies - I originally posted 1mm x 1mm, but its 10mm x 10 mm- not used to metric!!!) but it is enormously troublesome!  

My symptoms started very suddenly, on one Saturday in January 2010.  I woke up one morning & very simply, had no balance!  Overnight, it had gone.  After staggering about, "drunk" for a couple of weeks, I saw my GP, who thought it was related to a chill I'd caught a few days before, & told me she was certain it had no neurological basis.  Hmmm.

Fast forward 3 months, during which other symptoms appeared, (muffled ear, like a pillow was clamped to it, fullness, numbness of cheek, burning pain, & sharp stabbing pains in the ear) & I had an ENT appointment, hearing tests & finally an MRI scan.

During all this time I thought I was going mad.  I questioned every symptom - did I REALLY struggle to balance, was I REALLY hard of hearing or was I imagining it all?  I rang the consultant for the results, & when he told me I had a swelling/growth in the brain on the auditory/vestibular nerve, an "Acoustic Neuroma",  I cheered!!!!  I was just so relieved they'd FOUND something!  I wasnt going mad, there really, truly was something wrong with me...  Needless to say sanity kicked in in the next few days & I had a bit of a meltdown.  

Now I have had 10 months to get used to it.  I find my day to day life is affected in varying degrees, my hearing isnt good, & my balance is rubbish!  I am desperate for the operation to be done, at the moment I feel I'm in a kind of limbo - I cant get better until what's making me unwell has been removed.  I have a very understanding husband, & a 5 year old son, who needs his mum.  

So still I wait.  As we have NHS here, I have to keep waiting until there is a slot available for me.  Waiting is hard, but I count my blessings every day, I know things could be much worse.

So that's a potted history of me!  Hello to everyone & I wish everyone all the best.

[CHD63]

Hi Angie and welcome to this forum .....

Sorry the unwelcome guest in your head is causing you such misery.  That is quite unusual for a 1 mm x 1 mm AN to cause this much trouble so I can understand your frustration.  As we always say, the specific location where it starts growing has a big connection to your symptoms.

It is unfortunate that you are having to wait for relief, but so glad you have an understanding family.

Let us know how you continue to do.

Clarice

[JJB]

Sorry you have to go through this I too am in the UK and my consultant is operating on my 2cm AN obviously topical NHS the date he has given me is April/May.  The reason for operation was because of my age (38).  I too have 2 children 10 and 6 and the waiting is driving me mad.  I find out in September and have been having symtoms since Jan 2010.  What I would really like is for him to ring and tell me he has a cancellation for this week (not going to happen).  Ct scan tomorrow at Guys in London so he can see which way to go in.

Good luck and good to talk to someone else in the UK.
Julie

[Mark241]

Welcome Angie!  Hang in there!

[kenneth_k]

Hi Angie.

Welcome to the forum. I'm sorry to hear about your "limbo"-sensation. It is truly frustrating.
Embrace positive moments and try to remeber that

a) the tumor is benign
b) it is usually very slow growing or not showing any signs of growth
c) it won't kill you
d) it can be cured

This forum is great for getting information and sharing feelings and thoughts.

I wish you all the best.

Kenneth

[moe]

Hi  Angie,
A belated welcome!
Hang in there. We all can relate to the "limbo" state or as in my case "surreal."
Keep posting!
Maureen

[mattsmum]

hello angie - i am in uk too (west mids).
i too wondered if i was going mad with all my odd symptoms. i am 45 and put my balance issues down to menopause, and my hearing loss, ear fullness and tinnitus to firstly wax and then glue ear when it did not go with the wax, and headaches down to stress. i even thought my facial numbness was stress!
i was not really given the option of surgery - i was just told i did not want that and should have radio so i did. my post radio course has not been exactly smooth so far and at times i wondered if i should have pursued surgery but i was not keen on the idea at the time so was happy not to question the advice. were you given the option of radiation?
i hope your wait for your op is not too long, and that you can keep cheerful!
best wishes,

vikki

[Suu]

Hi from me too.

While waiting for your op please call in here and tell us anything you are feeling?  It helped me to see things a lot more clearly knowing that I wasn't alone.

Hugs,
Suu

[Angie UK]

Hello everyone!  What a welcome, that's so lovely.  I am not alone!!!!

Mattsmum (vikki)  hello to you too.  I am fairly close to you - I'm in Worcestershire, so I suppose you are the QE B'Ham too? I wasn't offered GK as my balance is so poor, it was decided that, as it was likely the tumour would swell after GK & cause further balance issues, I would be better off getting it out.

Hi to you Suu, where are you based?  Are you UK too?

(OK, note to self - read other posts before asking daft questions!  Found your "Australia calling" post...  x)

[ppearl214]

daft questions occassionally allowed here!

Hi Angie and welcome.  Spouse is from Darlington area (my inlaws now in Dorset area) and my mum's family from Leeds/Sheffield (yep, part Yorkie here) but live in the Metro Boston, Mass area now.

Your physicians are correct in noting that "potential" swelling can occur with radiation but usually prescribed anti-inflammatories/steroids are given to help keep it in check. My AN was same size as your's and now, almost 5 yrs later, with close monitoring, post-radiation, by my team, we were able to curb the swelling and now doing fine.  As we know, "individual results may vary" but with additional homework, you may see that GK and even CK (which is now offered in London.... ) could be an option if that is a route you decide to choose.

Again, welcome. Good to have you here.

Cheers!
Phyl

[lauralynn]

Hello Angie,

Welcome to the forum!  You have come to a wonderful and very informative forum, absolutely awesome people here.  Please keep us informed on updates.  Take care and you are in my prayers.

God Bless,

Laura Lynn

[grega]

Hi Angie,

Ken's post says all the basics, and the others should give you the strong impression that you're not alone, and many people hold you up in thought and prayer!

So I offer a big virtual hug .... and hey, don't forget the words of fellow Brit .... Mick J ..... Angie, you're beautiful!

We all have a strong feeling that you'll make it!
 

[mattsmum]

hi angie - yes i am at QEB'ham too (prof cruickshank).
i find it interesting that you were advised against radiation due to your balance probs. i was not told it might worsen and i am struggling with much worse balance now
i don't think it would have changed what i did- but it would have been helpful to have been warned!
but hey - ho; i know there are lots with much bigger tumours who have had to deal with a lot worse stuff. it is good yours too has been found when still fairly small (mine was 1.6cm).
keep cheerful while you wait (especially when lurching around...),

vikki

[Melinda_australia]

Hi Angie,

Welcome to the forum..
Hang in there love,

Time will pass quickly..
Take one day at a time!

You have a beautiful family, with love, hugs and kisses everyday, and that is your strength to help you through.

So keep chatting!!
Keep your chin up..
Your not alone..
We are all here for you too!!

Keep smiling.
Melinda 

[Suu]

Hello everyone!  What a welcome, that's so lovely.  I am not alone!!!!

Hi to you Suu, where are you based?  Are you UK too?

(OK, note to self - read other posts before asking daft questions!  Found your "Australia calling" post...  x)