Symptoms/side effects : What symptoms... - Acoustic Neuroma ...

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Symptoms/side effects

Jane_TBTC profile image
Jane_TBTCVolunteer
6 Replies

What symptoms/side effects are troubling you most and how do you manage them?

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Jane_TBTC profile image
Jane_TBTC
Volunteer
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6 Replies
Teashop profile image
Teashop

I am very wobbly when walking.leftvside of face numb.inside. Mouth numb and freezing cold.swallowing difficult.deaf on left side and tinnitus on both sides very loud never stops.get depressed and dispondant due to operation being cancelled twice due to covid.

Avarose2010 profile image
Avarose2010

Hi , my balance is now getting worse and I keep getting a feeling of pressure in my head and a funny taste in my mouth and my left ear sometimes feels full of cotton wool . My hearing was already compromised due to bilateral meniers so really very deaf now with little hearing on my left side at all .Thank goodness for my hearing aids as they also help with the tinnitus . Avarose2010

alberte profile image
alberte

I have a RH AN for which I received radiotherapy back in January. My worst side effect is imbalance when walking, I use a stick now but I still swerve like I'm drunk sometimes. I also have loud tinnitus, a numb-ish feeling on the RH side of my face (noticeable when shaving), tingling in my tongue (RH side again), and more recently sometimes I feel that my right eyelid is drooping over the eyeball (especially when I'm tired). Twice I physically overexerted myself and experienced a few seconds of bad spasms on the RH side of my face.

I manage the imbalance by stubbornly going for daily walks, just today I did a 7 mile walk over the Downs and it went fine. I think it is much better to keep plugging on rather than just to sit on a chair.

The other symptoms I manage by basically ignoring them. What else can you do?

Jmerlin profile image
Jmerlin

hi

I had a RH AN removed 7 years ago. I am completely deaf on that side now. I manage this by dancing around everyone so that they are on my RH! I also have got pretty good at lip reading to fill in the gaps (damn those masks!!). Poor balance, especially in the dark I manage with regular Pilates classes (really helps), andkeeping going for walks/cycles. If you stop, it gets worse. Recognise that you will get tired (because of all the above) and rest appropriately. Tinnitus you just have to ignore (or play the radio in the background if you are home alone or somewhere v quiet to cancel it out). Continuous pain in the ear and scar and muscle cramps in shoulder and neck - live with these by keeping active and interested to keep from thinking about it - and cease the day because they have saved my life by removing the tumour (all the above is a LOT better than being dead or v disabled). Hope all goes well.

MR42 profile image
MR42 in reply to Jmerlin

Hi,

Do you still get all them symptoms even though you had it removed 7 years ago?

PLTM profile image
PLTM

Hi Jane, is there a problem with BRIAN? I cannot see the pages properly now to check in. All was ok until yesterday. Now I can't get off Navigator and the check ins are all scrambled. I have logged out and back in with no change. Any ideas?🤪

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