Is deafness inevitable

I am new to this group, waiting for referral to audiology dept so may or may not have an AN. So been reading loads of posts which honestly have scared me. Is it inevitable that deafness results from treatment. My hearing is fine at the moment but significant tinnitus.

[Wounded101]

Hello, not a health professional so can't say for sure. But in it my own exoerience I had already lost hearing (gradually) so if you get diagnosed prior to losing hearing there is a good chance your doc will do their best to retain it.

All the best

[Stucoo]

Hi, It will depend on any proposed treatment if you do have a AN. I have had radio surgery and still have useful hearing but have been advised that it will more than likely diminish over time. Remember everyone is different.

[Birdwatchers]

HiThis group has been so helpful to me but everyone is at different stages and we don’t all experience the same symptoms.

AN’s are more common than I thought but are slow growing.

I know a few people with AN’s, most have normal hearing, one has a hearing aid and their AN’s have stopped growing. All their diagnoses have been overs the past 10 years.

My AN grew at an accelerated rate in 18 months from diagnosis and I was borderline for surgery but had Steriotactic radiotherapy on 2cm tumour in Dec 2020. I have lost 60% hearing.

However, I look at it being life changing and not life threatening so feel blessed.

Take care and best wishes

[Gardener21]

Hi.. having an acoustic neuroma is such a personal & individual experience. It seems no two cases are the same. I had mine, 21mm, surgically removed two months ago but had already lost most of the hearing in the affected ear anyway. I think it can depend on the position of the AN & what surgical approach is used. I don’t know about radiotherapy as I didn’t have this at all. I’m now totally deaf in my right ear but am coping well. The only thing I have difficulty with is knowing what direction sound is coming from especially if someone calls me. A large group of people can be bewildering but it’s early days still for me so for now I avoid big groups. Just happy to still be here to tell the tale..! Good luck with your consultations..

[bypass]

In a word NO! BUT it is highly likely if it is confirmed that you have an AN. It may be avoided if you have an AN which doesn't grow OR if you have an AN and have it treated by certain types of Fractionated Radiosurgery. There is however no guarantee that either will stop eventual deafness.

[Kobegeorge]

HiIt’s a worrying time but try not to worry

I don’t think a hearing test alone will diagnose an AN you will need an MRI too

Total hearing loss can occur when you have surgery I think.

I have some hearing loss on the side of my AN and I am waiting an appointment for a hearing aid I haven’t had any treatment yet still on yearly MRI

Has your GP mentioned an AN my GP thought mine was Ménière’s so had hearing test then MRI

that’s when I was diagnosed

So try not to worry until you know for definite

And if it is an AN you can get support on here

Kim

[Martin-mtig]

Short answer: No. It varies, can come and go. ASK LOTS OF QUESTIONS. Keep records. Find out what size your tumour is, if you have one. The MRI's have com e along way - nothing to fear - just make sure you ask for soft music on the headphones or they'll blast you with techno music. (I had c. 10 MRI's, you learn the drill).

I've had Cyberknife and, fingers crossed, at the moment some of my hearing seems to have come back, and the tinnitus is less (!).

Best advice: don't fret and worry. It does not help. Get the Headspace app or similar and do the meditation on being well, and overcoming worry. Do yoga. Do exercise. Change your life so you aren't sitting with this. Just my 2p.

Remember: these things are slow-growing, and BENIGN. A spcialist told me if you're gonna have a tumour, this i sthe one to have. I know this is all cheesey, but just offering perspective.

Big hugs.