Acoustic neuromas

[Tiggerakafidgity]

Hi all

Ive not really been on this community before.

Mainly on the adhd forum.

ummm any way as the title says.

Acoustic neuromas is what I was diagnosed with this afternoon.

I had an mri scan on my brain about 4 weeks ago and then middle of last week I get a phone call for another mri scan but with a dye in my head this time.

Then I get another bloody call asking me to go in today.

I met the same audiologist as last time.

I will say the specialist I saw was of the very few specialist that’s actually listened to my cause and that I actually got on with.

So any way I was with my wife when he called me in.

His words were “I guess you know why your hear”nope I said.

Well “good news we’ve actually found something,this is what you have,a 5mm x 4.8mm none cancerous piece of some lump on the edge of your inner ear”

Few I thought,so I wasn’t imagining hearing noises etc.

So I’ve next month to go to see some one else and then have another scan.

Then a scan every 6 months just to keep an eye on the size.

And also possible ideas of removing it as this is what’s causing the tinnitus and slight hearing loss as pressing on a nerve.

As any body would with having adult ADHD,I was more concerned about how my wife was taking it.

I mean life’s not exactly been easy what with two cancer scares and being diagnosed with somet new every year.

Not sunk in yet but I’m sure will be ok

Thanks for listening just needed to chat about what was in my mind ha ha

[NicBTA Partner]

Hello and welcome to the British Tinnitus Association forum. Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

We have some resources that you might like to check out in addition to our home here:

tinnitus.org.uk

takeontinnitus.co.uk

Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call [phone])

The British Acoustic Neuroma Association have an excellent website, helpline and Facebook group so I'd also suggest you reach out to them. You can find them at bana-uk.com/

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

[JohnJopp]

Hi fidgity. Your situation sounds pretty much identical to mine. My T started in August 2013. ENT sent me for an MRI scan and they called me back for another one with dye. Very worrying time waiting for the results but the ENT consultant told me I had an acoustic neuroma measuring 4mm on my acoustic nerve on the left side (my T side). They are slow growing and I have been having annual MRI scans since then and it is still only 5mm at the last scan. I have another one scheduled soon. ENT told me that at this stage it's not worth doing anything but they wouldn't want it to get much above 10mm. I was told that any treatment wouldn't mean my T would go away. Treatment wouldn't involve removal by surgery (unless it was really big and physically pressing against other bits). They zap it with radiotherapy or something to stop it growing. From memory there are two options. I think one was called gamma knife and I can't remember the other one. I'm sure they will come up if you just google acoustic neuroma treatment. The thing is yours is still very small and likely to stay that way for years so just don't worry about it for now.

John

[Tiggerakafidgity in reply to JohnJopp]

Hi John

Wow what an incredibly moving story you have written right from the beginning.

So very honest and wonderful to share your story.

Ive only just read it and already it’s helped my emotions in a good way🤗.

I’m having some down time as my wonderful wife has popped out for a few hrs.

I don’t play the Xbox often,certainly through the day during the week.

Ive a passion for cars so I’ll be having a little fun with the Le Mans update.

Of course with my headphones on.

As having adhd I can let my self out of the box for a few hrs.just letting my brain have a little fun by a small dose of hyper focus and that will relieve me of some tinnitus for a while.

John.ive done so much research in to various forms of ADHD and the other wonderful issues good and bad that come with it.it kinda tires you out when you then have to self teach your self another strategy for self help on another diagnosis.

I did pick up a few tips and did actually discover how to re align my ears to help with balance when I had an awful 2 week episode of not being able to get out of bed.being on anti psychotic meds I’m not able to take anything for balance vertigo etc so had to learn the hard way,great for character building lol.

Ive promised my self some own time today.

If I manage to discover where I stored the info on tinnitus and ear balance etc I’ll pm you later if that’s ok.

Thanks for the reply

Regards