Tinnitus Getting Really Bad — Vestibular Schwannoma

[Amy Zing]

Hi hi

I am here as I am struggling with my tinnitus at the moment.

I have a Vestibular Schwanomma. I have always had tinnitus, however lately it is becoming insane. I actually think I know why what's his face artist wanted to cut his ear off for!

I have had radiotherapy (FSR), and that stopped the trigeminal neuralgia - but this bloody thing is still going. Surgery is next step, but my surgeon is giving me a few years reprieve as I will almost certainly get facial palsy and go totally deaf. I mean, I'm kinda deaf already, so that doesn't bother me. And I have no balance - but I mean, I'm used to that - I just have to be careful. Not looking forward to facial palsy tho (shallow I know). Anyhow, my tumour can safely get bigger apparently - will need surgery in a few years.

But this freaking tinnitus is off the hook. I always had the scary movie high pitched stuff. Now though, I have this really ominous bass rumble that is suffusing everything. It is still present - even in a loud movie - background sound doesn't block it out unless really really loud. I am getting distracted when talking with people and I can't hear people over the bass rumble. My life has turned into an evil horror movie soundtrack. I like horror movies, but, gah!

Anyhow - anyone in a similar boat found treatment that works? I take lorazipam and that can sometimes take a slight edge off it but yeah, I feel helpless. Apparently even if they re-section my nerves and cut them out, I will still have tinnitus.

Is there anything that can work? Anyone been in a similar boat and found relief?

Thanks! And hi hi I'm a noob and I'm Amy.

>^.^<

 

[glynis]

Hi Amy,

Do you wear hearing aids, as they can help? Some of them also have a white noise setting.

Hope your tumour is slow growing and regular MRI can monitor it.

 

[Amy Zing]

Hi Glynis. Thanks for the reply. Yeah, tumour is slow growing, so good on that front. My neurosurgeon told me i will almost certainly loose some face as I have had radiotherapy already which makes surgery difficult.

I do have hearing aids. They have little bell sounds which work on the top frequencies - they are the one's I've become accustomed to tho - I mean, always there but I can block them out. Hopefully will be able to block out the bass. It is quite new - only been getting worse over the last month or two. It seems so loud, and I guess I am scared because of my tumour and get anxious so it gets worse lol!

I had an MRI two months ago, and the tumour is growing slowly. Yeah, am on regular monitoring.

Wondered if any of these drugs people talk about here could help - bit scared of epilepsy medication tho.

 

[undecided]

Your neurosurgeon is waiting until the tumor gets big enough... and in the mean time you have to endure tinnitus that gets progressively louder? That sucks.

And if it gets large enough and start causing facial issues and other stuff...? Shouldn't such tumors be removed as soon as possible? I am no doctor, just curious.

 

[Amy Zing]

I know - sounds backwards. The tumour is slow growing and not malignant. The surgery is what will cause the palsy - it can get to twice the size apparently and will still be fine - surgery will be no different. It is just about preserving quality of life for a few years. And the surgery won't stop tinnitus - it may make it worse.

 

[Tweaker]

A neighbour of mine had his acoustic neuroma removed after about 12 years from diagnosis. He is deaf on one side but it didn't make his tinnitus worse. He seems to be coping better now than before he had the operation.

I also have a friend at church who had the same thing, except he didn't have tinnitus before or after the surgery, which seems unusual.

You sound like a positive person, even with your problems which are worse than mine. I hope you find some relief.

 

[Brain Tumor Dave]

I have a Vestibular Schwanomma. I have always had tinnitus, however lately it is becoming insane.

Hi, Amy, I'm Dave.

Curious; what size is your Schwannoma? And how often do you MRI?

 

[Amy Zing]

Hi.

it is about 2cm round now. I get 2 yearly MRI's.

thanks,

Amy