Hello everyone, has anyone else exper... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Hello everyone, has anyone else experienced tingling and numbness in their lips and tip of their tongue? Had it for weeks now . Many thanks

Avarose2010 profile image
12 Replies

Is this down to my AN ?

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Avarose2010 profile image
Avarose2010
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12 Replies

Hi! Yes I’ve had similar symptoms and my surgeon said it was linked to my AN as it was on the side of my AN. I think it’s linked to the trigeminal nerve. I found this fact sheet which was informative so check it out nervetumours.org.uk/images/...

Avarose2010 profile image
Avarose2010 in reply to

Many thanks for that , I will take a look. Kind regards.

bluebird567 profile image
bluebird567 in reply to

Hi Avhortin1, Thank you for sharing the link for the Nerve tumour site. It was the most informative article I have read so far for the Vestibular Schwannoma. Wishing you continued good health.

in reply to bluebird567

I’m glad you found it useful it really helped me to understand all those little niggles that you don’t necessarily have time to ask your GP or consultant about. Take care xx

touring profile image
touring in reply to

What a good explanation of what goes on! Thanks for that link.I am 12 months post operation and still having some symptoms. I have also had gamma knife radio surgery to hopefully seal off/maybe even shrink the bit of tumour that was left. Everything is gradually getting better - I am at the older end for dealing with all this so it takes a little longer.

in reply to touring

I’m glad you found it useful! I had my surgery in May and they left a bit, I’m wondering if I’ll have to have radio surgery. Hoping that your symptoms continue to reduce and that you can get on with your life as you were before 🙂 x

touring profile image
touring in reply to

I was advised to have the gamma knife as the original tumour was very fast growing. I have had a follow-up scan and the results are really positive. So, onwards and upwards! - looks as though I only need annual checks now. Take care x

in reply to touring

That’s interesting to know. They have no idea if mine is fast growing as it was large when it was found so they removed it within about 3 weeks so I guess “time will tell” as my surgeon keeps saying. Sounds really promising for you. Long May it continue xx

Martin-mtig profile image
Martin-mtig

Have you flagged this up with your consultant? I'd push it - so they can assess whether it's time to move you up the treatment ladder.

Avarose2010 profile image
Avarose2010 in reply to Martin-mtig

Thank you for your reply, had my last MRI 1st of July and still waiting for my appointment, to see the skull base team. Been told when I emailed and phoned that it had grown but all options were open to me as increase was not aggressive.

touring profile image
touring

Yes, I had these symptoms on the l.h . side - sometimes it felt as though I had put a fizzy tablet in my mouth! All this is gradually disappearing since the op. Hope you get your appointment soon - keep pushing; I found it worked a treat (even contacted PALS ). All the best.

Avarose2010 profile image
Avarose2010 in reply to touring

Hello , Thank you for your reply. Yes that’s a good way of describing it . Have just been contacted today with an appointment at last , so we shall see what they say . Kindest regards.