Really scared.: I have had a feeling of... - Acoustic Neuroma ...

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Really scared.

reallyscared profile image
13 Replies

I have had a feeling of fullness in my left ear for 6months with sometimes pulsate tinnitus and other times a ringing tinnitus. If I blow down my nose it clears then when I swallow it's back. My GP referred me to an ENT consultant who says I probably have a form of ETD and some slight hearing loss but then mentioned the word tumour and has referred me for an MRI. I have never even had a blood test before and now the fear that I have an AN has taken over my life. We are off on holiday in a few weeks but neither me or my husband are sure we should go and I am a carer for my mother as well as working full time so I am terrified about how she will cope and how it will affect my job. I'm 49 and need to work.

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reallyscared
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13 Replies
anan88 profile image
anan88

Hello! Go on holiday, you deserve it and it won't make a jot of difference to the MRI, but you'll be better for it. Then take it all a step at a time. As my consultant said to me at the time "If you're going to bother having a brain tumour, an AN is a really good one to have". 6 years later I tend to agree. Honestly. But a holiday is always a good idea.

reallyscared profile image
reallyscared in reply to anan88

Hi, thanks for taking the time to reply. The whole experience is exhausting and I don't even have a date for the MRI yet. For someone who has never even had a blood test before to be told in a casual manner by the ENT that I may have a tumour is terrifying. I am spending pretty much all the time I have spare, which is mostly through the night, reading about my symptoms and scaring myself even more. The full feeling is something I am getting used to but the pulsate tinnitus is horrible and gets worse the more I think about it. My husband is brilliant but doesn't know what to do. Coincidentaly my uncle was diagnosed with a cancerous brain tumour the same day as my ENT appointment.

anan88 profile image
anan88 in reply to reallyscared

It's always good to be in touch with people who know how you're feeling, especially as your sense of humour develops, which it will. My husband has been brilliant too, always wishes he could do something.

It may seem unthinkable from where you are now that you'll feel stable emotionally again, but you will. Look how many of us there are who are absolutely fine even if it is an AN.

Kristyll profile image
Kristyll

If it shows to be an A N, we are all still here to tell the tale and I doubt many of us are invalids due to the treatment. You should be able to get back to work when you are recovered and life is mainly normal with maybe a little disruption. You sound like you need a good holiday not just for yourself, before whatever happens, but being a carer is also demanding so go away and enjoy until you know definitely what is happening. We are all here still, to tell the tale.

smithy1313 profile image
smithy1313

Ah dont cancel your holiday. Only 8 in a million people are diagnosed with AN so it is very unlikely. Wait until the results of your scan so you know what you are dealing with. I was diagnosed at 40. Watched & waited for 1 year then had the op. That was 8 years ago & I'm fine. Think when someone says the word tumour you think the worst but these tumours are very slow growing and benign. Please dont worry x

reallyscared profile image
reallyscared in reply to smithy1313

Thanks so much for the reply. Definitely going on our holiday, we really need it and hopefully by the time we go I'll have the MRI results. Still worried but calmer.

JDWYER1980 profile image
JDWYER1980 in reply to smithy1313

Hi, I was diagnosed with 9mm AN back in February and I am on watch and wait with another mri scheduled for next February. Did you have surgery or radio therapy after 1 year? If you don't mind me asking was your AN small? Regards

smithy1313 profile image
smithy1313 in reply to JDWYER1980

Hi, I had surgery after 1 year. My tumour did grow a little faster than expected. Think the average is normally 1mm a year. Mine was reaching 3cm by the time I had my operation. That was a really difficult year - waiting to see. But as I said, all fine now. Struggle sometimes with the deafness but its ok. Linda

JDWYER1980 profile image
JDWYER1980 in reply to smithy1313

Thanks for your reply. Really glad you are doing well. I am just a little anxious waiting. Damian

day52 profile image
day52 in reply to smithy1313

Hi I also struggle with hearing..in crowded places worst of all.....but my husband and i quite often laugh when we are out in the outdoors and he calls me .... as you know it's hopeless to establish the direction sound is coming from...lol..but I'm still here and adapting and getting on with life..like an old one was teddy lol

reallyscared profile image
reallyscared

Hi everyone, I finally have my MRI results and there is no AN. Thank you all for your support, it's really helped and good luck to you all.

smithy1313 profile image
smithy1313 in reply to reallyscared

Thats great news ! Pleased for you xx

day52 profile image
day52 in reply to smithy1313

Just seen this...excellent news

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