Awaiting AN treatment

[DVC2021]

I had noticed progressive hearing loss and tinnitus in right ear and had put it down to noise exposure. I was fitted with a hearing aid in July 2020 and was referred for MRI as a precautionary measure.

I had confirmation of 1.5 cm AN in November (COVID delays).

It was suggested to wait 12 month for 2nd MRI July 2021- which has confirmed growth, but still below 2cm, referred to consultant in October and have the option of surgery or Gamma Knife.

I have opted for Non invasive option and am awaiting appointment.

Does not seem to be much of a rush compared to some of the posts I have read.

Little worried maybe a coincidence but have noticed more headaches on right side since confirmation of growth.

I initially noticed some balance problems but I seem to have adjusted to these also.

Fingers crossed my symptoms do not deteriorate after the surgery.

[Bob36]

Good luck with your Gamma a knife treatment when it comes. I have a similar story, headaches, balance issues and hearing loss with a small AN that grew over a 5 year period of watch and wait. Am now 7 years post gamma knife and all seems well. Scans every 2 years still.

[DVC2021 in reply to Bob36]

Thanks for the reply, did or do you have any ongoing symptoms post treatment.I suppose it’s one of those things, the treatment affects everyone differently and the prognosis could be worse.

One of my worries is having balance issues and not being able to drive. Or even facial paralysis.

Thanks

[Bob36 in reply to DVC2021]

I’ve had some facial pain that started last year, but came after a very bad cold…? Neurologist said it could be to do with my AN, but as it hasn’t grown since gamma knife treatment I really can’t be sure. My balance issues (loss of 70% in my AN side) have not been much of an issue - self rectifying mostly. But I can’t do heights very well or walk through narrow areas without noticing - whereas this had never been an issue. I had headaches and a bit of pain post gamma knife, but generally speaking I haven’t had any debilitating issues. Gamma knife is so very precise that I opted for it over surgery. My hearing loss has stayed the same which I’m pleased about as I was told gradual loss was inevitable. All in all, pretty good so far. Worries are understandable, but as an anxious person - health anxiety especially, I can tell you that it’s been a good choice for me. Everyone is different though and I went on the recommendation of my neurologist. Speak to them, they were brilliant with me. I’d say don’t worry - but you will, but the great thing for me was finally finding out something was wrong and catching it before it grew bigger. Take care.

[Happy-Singer in reply to Bob36]

Bob36, how are all of your symptoms now. I had gamma knife last Thurs 11 Nov, still got all symptoms at mo, dizziness worse at mo. My schwannoma 1.1cms but was getting a lot of symptoms

[Bob36 in reply to Happy-Singer]

My symptoms are all stable. Post gamma knife there wasn’t much change. You can expect the AN to swell at first and then settle over time. I used to have head pain which I occasionally still get, deafness stable. Tinnitus worse. No dizziness, but a few balance issues. Will they scan you in 6 months? Keep on top of your appointments. I always have to chase for check ups and I am 7 years post gamma knife now. Take care.

[flappers]

Hi! I have had a very similar trajectory to yourself, 1.5cm in Sept 20, 1.6 in Feb 21, opted for watch and wait and rescan Feb 22, as my only (!) symptoms are SS hearing loss and crazy tinnitus, the odd lip and face twitch and possibly a bit of balance issue but think I’m just clumsy! All things I can easily live with and that wouldn’t be resolved by treatment, in fact treatment likely to make those things worse. Do no harm is my approach, for now. I did start to get some head pain around the back of the ear recently but had been suffering from terrible headaches when first diagnosed, acupuncture helped sort those out…I do believe they must have been stress related. It is probably a good idea to go for radiotherapy whilst it is still an option, be aware it can cause swelling and increased symptoms after a few months ( even 6 months later) but then stop the growth and hopefully prevent need for surgery… many people seem to have this very successfully. We all have different tolerances and feelings around having intervention or waiting, I would say read so the info the hospital and BANA produce, ask re aftercare and what you’ll need to be aware of to help your own progress, and know you’re not alone, this is a good forum for asking questions!! Good luck 🤞

[Kristyll]

Hopefully you hear sooner rather than later Inthink on the main, although we are often left with various symptoms Inthink the pre op ones usually decline somewhat. Good luck and take care x