ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Louise UK on December 07, 2009, 05:27:12 pm
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Hi everyone. Thought it was about time I said hi! Im a member of the Britsh site, but I must say I find myself on here a lot more as there is so much more information to read! I have found reading the posts from you all so comforting and I find myself reading the same posts over and over just for reassurance if im having one of my bad days. I had my AN partially removed in March this year, to save the facial nerve, and had the rest treated with GK about 2 months ago. Im 27 was 26 when I was diagnosed after about 2 years of being fobbed off by my GP. So I insisted to be referred to ENT. I knew by doing my own research I had an AN, but my GP wouldn't listen to me. Anyway, had my MRI which I was expecting to show an AN. Well, the results were sent to my GP who called me to come to the surery ASAP and told me that I bacically I had a cancerous mass!! I was in shock as you can imagine but deep down I knew something wasn't correct. It took 4 hours of waitng for my films to be sent in the neurology department( you can imagine it felt more like 4 days than 4 hours!) then it was corredtly diagnosed as an AN. It took me so long to accept what I was being told as I couldnt understand how the GP could get it so wrong! I still have that feeling even now and get upset quite on times but I am a lot better than I was. Im seeing a councillor tomorrow to see if it helps, hope so. Anyway just wanted to say what a brilliant site this is!
P.S. Denise, I am in Wales, and I had my op in the Heath in Cardiff too!. xx
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Hi, Denise ~
Welcome - and I trust you'll continue to use the ANA site/discussion forums as a resource as you continue your 'AN adventure'.
Jim
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What a story, Louise! I'm glad you stood your ground, but I wish your GP had been more willing to listen to your intuitive reasoning. I'm guessing it was a large tumor?
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Hi Denise,
welcome to the forum. I feel for you. What scary news to tell someone. The word cancerous mass is enough to put me away.
Doctors and their etiquette.........
How are things now since your GK?
I think a counselor is a great idea to help work through those feelings.
Chime in here- we have all sorts of maladies that we probably can relate to so you won't feel so alone. ;)
Maureen
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Hi Louise .....
..... and welcome to the other side of the pond! You certainly made it through some unusually difficult times with your AN diagnosis and treatment. Tell us a little more about the size, location, etc. of your tumor. What a scary time you had. So glad it sounds like you are doing extremely well considering all that happened to you.
Best thoughts.
Clarice
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Hi Louise,
Welcome. What a scare! Since these AN cases are very rare, GPS and ENTs don't see a lot of them. My ENT said to me that he was just sending me for an MRI for precaution but he was more than certain that it was nothing. When I spoke to him on the phone to let him know that I got the results and that it was a tumour, I could sense his surprise on the other side. Maybe these ANS are not as rare as we think. Counselling is good. My GP recommended counselling if I was having a difficult time dealing with it, I thought about it but haven't set up anything yet.
Vivian
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Hello and welcome. Husband's grandmother use to live in Rhyl (not to be confused with my nickname) Wales and his family is now down in Dorset England (yes, married me a bloke!). Actually, I'm 1/2 Yorkie although born 'Merican, so please don't dismiss me for that! :)
Just want to say "welcome" to the UK gang.... good to have you here and looking forward to your participation on the forums as it will help others more than you know. We have a good contingency from the UK that participate here and my next trip over, hope to get together (again) with ANer's from the UK (did so last Christmas holidays... unsure when flying over next. We base in Dorset but travel to C. London and North).
Again, welcome.
Phyl
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Hi Louise!
So glad you found this Forum - the folks are FANTASTIC!
I was misdiagnosed, and would not be here if it were not for my older sister, diagnosed 6 months before me.
When i read her symptoms and heard the results of her MRI, i said, '...that is me, why won't anyone listen!?'
So i switched docs, asked for the MRI, and the rest is history.
You are very, VERY brave going through all these treatments, and so young! [I have a 25 year old daughter!]
Personally, i think it is wonderful that you are seeking counseling...one of my daughter's did this and she said it helped so much!
All my best to you on the other side of 'the pond!'
Please keep us posted on your progress.
Sincerely,
Sue
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Just wanted to say welcome I to was misdiagnosed 2 years ago, but did not pursue it and excepted the symptoms as permanent, then I fainted this year and went to another doctor and was diagnosed as having a 1 cm. AN, I was lucky it was small. But I cannot imagine what you have gone through with the doctor's diagnosis as having a cancerous mass thank goodness he was wrong. If you need information or just to vent you have found the right place.
My prayers are with you,
Pat
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Thanks everyone so much for your quick responses. Ive definately been through it over the last 10 months, as everyone who is dealing with an AN has. As I mentioned mt AN was over 4cm, im not sure what location it was, I didnt know an AN could be in different area's?? My symptoms were quite suttle, I initially went to my GP complaining about facial numbness, but the more research I did on the internet I was thinking, "yeah, my balance isn't great" and "i cant hear as well in my right ear". I just put it all together and I just KNEW I had an AN, and as my face was slightly numb, I knew it was large.Unfortunatey I understand that being misdiagnosed for years, as many have mentioned, is a very common accurance.
I had my first councilling session today. I went well, although I did end up crying, (I knew I would). I always get teary whenever im telling someone new the whole story of my diagnosis, etc. This is why I thought I needed to see someone, as I still get my days, even 10 months down the line. I keep reliving that day I was told that awful news, over and over. Even though I know it was completely WRONG!, I cant seem to shake this feeling. Ive always got my guard up now, like im preparing myself to be told some other bad news, it exhauasting! And all because of that uneducated, ignorant, stupid GP!! Sorry, had a bit of a rant there.
Phyl, did you say that you have visited wales?? Weather's not great here, as my huband constantly moans about! He would move to live it some other country in a heartbeat!
My GK treated was a breeze compared to my op, I felt a bit nauseus after but nothing major at all. Just wish you didnt have to wait so long to see any results! Thanks again for ALL your responses, really means a lot to me. xx
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Hi Louise .....
So glad you went for a counseling session today. It really helps to have someone help us put things into perspective.
By the way, my husband and I visited North Wales 7 years ago and we were enchanted with the beautiful scenery and castles. Maybe we hit it just right but the weather was lovely ..... cool but mostly sunny. I'd love to go back again and hear more Welsh singing!!
Best thoughts.
Clarice
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Hello Clarice,
Your right, talking about it does help. My sister and my mother, who have been there for me all the way through all this, always know when Im having a bad day, even if i haven't said anything. They get me to talk about it, even if Ive gone over the same ground before. They tell me its good to talk about things and the more I do, the easier it will get. I hope there comes a time when all my thoughts aren't completely consumed by this.
So glad you have visited Wales! It is a pretty place. Dont get me wrong, we do get some fine weather, but the last few summers, we've had maybe a week of sunshine and thats it! Nevermind, im not one for the sun anyway, but my husband loves it!
Take care,
Louise. x
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Hi Lousie, its anne C. from the UK site, i seen another lady on here yesterday from wales maybe she will see it and you can get in touch with her, many stories in the uk are similar too yours as they dont seem to want to scan you in the uk for some reason (MONEY), i was misdiagnoise for many many years, i was really young when my hearing started getting duller i was only a kid and they said it was conductive hearing loss. take carex
ps. lousie i still get days when i cry and think why me, its not as bad now 3 years down the line, like you i keep waiting to hear more bad news i feel like i cant get too happy as something will come along to put me back down again.
It all started when i was pregnant with my ist i was so happy beaming from cheek to cheek then the phone rang and my mum had died, from then on i just feel i cant be too happy as something bad will come along i know its CRAZY its just how i feel at times.
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Hi Anne c,
Yeah I saw a post from Denise who said she had her op in the Heath in Cardiff, the same as me. I know, it's really bad that so many people like us have been misdiagnosed for years. I think your right that money is the main factor in their reluctance to send you for an MRI. Sorry to hear about your mum. I know exactly what you mean about not letting yourself get too happy. Its a self protection thing. I know I cant live the rest of my of my life thinking like that, thats why I thought Id better see someone, to try and change my way of thinking. Do you ever feel you would benefit from seeing a councillor? x
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Hi Louise, ive never really thought about it, but i cant see how a person talking to me could make me feel any different, i do talk about my AN alot, but its just build into me now to feel the way i do.
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I felt like that too, but my sister kept saying that I should speak to someone who is qualified to listen and hopefully help. I find myself talking about my AN everyday nearly! I think im going on about it too much on times though, but I cant help it. Hopefully this will become less as time goes on...
Take care,
Louise. x
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Louise & Anne,
My heart goes out to you, both so brave and you have been through so much at such a young age... :(
It does sound like you have very supportive families, i believe this is really important to the healing process.
And when you need us, we are here to listen, too. :)
My thoughts and prayers are with you to find peace in the coming days.
Sincerely,
Sue
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thanks suex