New and in the UK

[JJB]

Hi been reading this forum since being told I had AN, been a long process and all I seem to do it wait.

Had my ENT appointment the being of July, my MRI end of August and didn't get a response to my MRI for 3 weeks.  My consultant has pass my referral onto a specialist and have been waiting since the middle of September, been told that non urgent waiting list is 13 weeks.  The wait is worse than being told I have AN.

I don't have any symptoms now did have dizziness, but these have now gone same with the ringing in the ears, my hearing is OK slightly blocked like swimming ears.  This week just feeling off can't quite descripe it just not my self.   Hope this is the norm.   

Would love to hear from anyone in the UK as well as I feel pretty much alone this side of the pond.

The forum has really helped me to understand whats going and what to expect, so thank you very much

JJB

[Lizard]

JJB,
I want to be the first to welcome you to the forum, I'm sorry you're feeling alone but there are many on the forum from outside the US.  I know the wait can be tough, but thankfully an AN is typically a slow growing tumor.  We all go through a broad range of emotions during our AN journeys and hopefully once your wait is up you will have a clearer picture of what is going on.  It does give you some time to research your options and also allows you to go into the appointment well informed.  Do you have the dimensions of your tumor or the MRI CD?  Just curious, because your symptoms seem to be changing.  Sounds like you're describing a "wonky" feeling as we affectionately call it around here, and sounds normal.  I'm not a Dr and I don't know exactly how you are feeling, but generally treatment decisions are a function of how your symptoms are affecting your life and they size and location of your AN.  Even though you are not in the States you can usually get a free consultation from most of the well known treatment centers in the US.  House Ear Institute (HEI) and University of Pittsburg (UPMC) did free consultations for me.  Even if you go with treatment in the UK they can still help you to get some answers in the meantime.
Hang in there,
Liz

[JJB]

Liz thank you very much for your reply my AN is approximately 2cm and my GP told me that it was quite normal for the symptoms to come and go.  Fortunately mine have not been to bad, still have my hearing.  But did stuffer from bad dizziness that last about 3 weeks at a time.  At the moment I just feel wonky as you say, but went though a bad patch were I had every symptom under the sun and everything was affect my left side (AN side) my GP told me I was stressed and offered me Valium or anti depressant refused them both, as I have 2 young child (6 and 10) and need to be alert for them and working on top of that, so probably very stressed.

Thanks for all the advise as I said to my GP all I need to sort out my stress in an appointment with the specialist and then I know what I am dealling with and can face it head on.

Julie (JJB)

[Louise UK]

Hi Julie,

I wanted to welcome you to this fab forum. Im from the UK too, im in Wales. We all can relate to how your feeling, its very normal. All I can say is that I have found this entire journey very emotional and stilll have my moments at times, but it does get better, it just takes time. There is so much information to take in you will probably find it overwhemling, but you will find it easier to deal with as time goes on.

Dont be afraid to ask anything here, there will always be someone more than happy to offer their knowledge and experience. The folk on here are great and have always reassured me and made me feel better about things, no matter what the question is.

Take care,

Louise. x

[CHD63]

Hi Julie and welcome to this forum .....

I think many of us can identify that waiting is one of the worst parts of this whole journey ..... that and making a treatment decision.  Once you see the specialist and have a treatment plan, you will feel much better.

Gather your questions and start asking.  If you have not already done so, you might send for the free Acoustic Neuroma Association's materials.  They are very informative and reassuring.

Best thoughts.  Clarice

[Jim Scott]

Hi, Julie ~

I just wanted to add my welcome and the hope that you'll be able to get some (medical) direction on addressing your AN.  I'm sure that our U.K. members will be posting here soon, as Louise has done, and perhaps they'll have some advice for you as to how to best navigate the NHS.  Meanwhile, I'm pleased that the ANA forums have been helpful and I trust they'll continue to be so as your AN 'journey' moves forward.

Jim

[joebloggs]

Hi Julie,

I remember feeling the same as you when I was first diagnosed, but soon found out there are plenty on here from all over the place, including the UK and you'll find that the whole lot of us are just as helpful as those in your own country!  I'm a dual national Australian/Brit but live in the UK.  I was diagnosed in the UK but had my surgery in Australia (my family are there).  It's not uncommon to have to wait a lot for bits and pieces with AN's, particularly when they're small or medium (not super large, then things move very quickly!!).  I first showed symptoms 2 years before I was diagnosed and was dismissed by my GP, then some more, somewhat worrying symptoms and I popped to A&E to get checked out, that was in May.  The doc I saw at the hospital left the hospital trust and nobody thought to tell me the results of my MRI.  I chased it up and finally got an answer  in September and was told of the diagnosis and had surgery in March - once I was diagnosed, it was almost a relief to know what was causing all the symptoms and that it was treatable.  I found the time after diagnosis went quite quickly and I just cracked on with lots of other bits and pieces in the meantime and went to the gym so I was fit for the surgery!  Hope the time goes quickly for you too.  Have you got a good specialist over here?  What area are you in?

Cheers

JB x

[JJB]

Hi JB, school holidays and kids are driving me mad haven't got any time of my own.  I've been referred to Prof Gleeson at Guy Hospital, London.

How was you after the surgery?, my biggest fear is how my husband will cope with me in hospital and afterwards.  I have my mum and dad in the same street so she will help out but not sure how I or the kids will cope without each other, silly I know.  Also have very supportive friends near by so I know there is lots of help,but not used to asking for it.

Julie x

[joebloggs]

Hi Julie,

Sorry the kids are driving you mad - school holidays are my favourite time because I can get to work without the terrible school run traffic!

Shall send you a PM for the rest!

Cheers

JB x

[moe]

Hi Julie,
Just a friendly welcome and HI- I can't imagine the stress of kids and holidays coming, and working and NOW finding out about your AN. I have empathy craziness for you!

Let us know what your doctor says. You may not even need surgery, depending on the location, presence of any brain stem involvement. Hopefully you can watch this thing and put it on your "new year's" list (I know it's NOT a resolution).

(My symptoms were very subtle over so many years, I ignored them, while I was in that crazy kid raising/ working only part time / military wife mode. I was in for quite the surprise when I finally was diagnosed. I call it my "insidious AN." Turns out it had been in there forever. So I think it is good that you know the bugger is there, and it will be resolved one way or another).
 
Just a lot at once, you have my heartfelt prayers through all this.

(My sister lived in London years back  and lives in the states now. She feels like she so belongs there, and really wants to move back!!!-have visited. It's a lovely city.)
Maureen