Operate or not. No win situation.

[Delgirl1]

I was diagnosed in 2015 with a smallish A.N. and have been on a watch and wait programme since then.I was diagnosed as bilaterally deaf.

This year I was called in by the consultant and told it has now grown to an operable size.

My problem is that I am also profoundly deaf in other ear, my hearing aide for that ear

Only balances out with the side on my affected side.

If I have to have the operation , I will be without any hearing at all.

cochlear implant is not an option.

I am 82 years old and I am sole carer for my disabled husband (dementia, diabetes, rheumatoid arthritis multiple joint, prostate cancer)

Has anyone else been in this position and what did they. do.

Can I have some feedback please.

[Bob36]

Hello, can you ask whether it’s possible to be considered for Gamma Knife? It’s a day in hospital with (for me) few side effects. I have also managed to maintain the hearing in that ear, it’s slightly worse than it was, but not gone. I did not opt for surgery as I had young children and couldn’t afford the recovery time and was told that there was a possibility of my hearing being preserved - but not guaranteed. I would also consider some more watch and wait and ask if surgery was necessary - is the growth rate significant etc? Do you have to have the surgery - I was given the option of either surgery or gamma knife. Please ask the consultant more questions. Best wishes.

[Delgirl1 in reply to Bob36]

Hi Bob, I was told that surgery was my only option. Gamma knife was not even mentionedWhether this was because I have no hearing to save .

Waiting now for my last scan results to judge the rate of growth.

At my age any procedure can be fraught with risk and I am willing to try to cope with the pressure on my brain stem , hoping it won't be as bad as predicted.

Thank you for you suggestion

Cheers Del

[GGourmet]

I’m a little uncertain why they waited for it to become an operable size. Do you know its current size? It may just be they needed to be certain it was growing. If it isn’t growing they will not operate.

Hearing loss from the surgery is slightly worse than the hearing loss from the tumour. This can be corrected with a hearing aid so, I think you perhaps should not be concerned on that point - your hearing will deteriorate without surgery anyway to a point where it will be much worse than what the surgery will do.

You may not be fitted with a hearing aid until 12 months after surgery as this is when your hearing in the tumour impacted ear is likely to be at its worse.

If they are offering surgery now, I’m sure they have taken account of your age being 82 and the impact that leaving the tumour may have, if you don’t have surgery.

You will need support from family to help with your husband both during surgery and the recovery period thereafter. You are better for your husband alive rather than let this kill you. I hope that’s a positive message.