Newly Diagnosed

[Alison_L]

Hello everyone! I've been on Health Unlocked for a few years now, but on the British Heart Foundation pages, as I had a heart attack in 2018. Last week I was diagnosed with an Acoustic Neuroma, having gone suddenly deaf in my right ear 16 months ago, and eventually having an MRI 2 weeks ago.

Apparently the tumour is 2.1cm x 5cm. I've been referred to a Skull Base surgeon, but who knows when I'll get an appointment with them. Could anyone tell me if this is regarded as a large tumour, and if so, is surgery more likely than radiotherapy or W&W? I'm 60 years old.

[Wounded101]

Hi Alison, sorry to hear about this, acoustic neuroma are pretty slow growers, and are benign. Surgery is usually the common choice for tumours of this type but it also depends where its positioned if its nearer to nerves it more difficult to get to.

All goes best

[Alison_L in reply to Wounded101]

Thanks Wounded. I have an appointment with the Audiological Medicine consultant on 25th April (and I suspect this will be before any appt with the Skull Base surgeon comes through), so I will ask him where the AN is. I imagine he will be able to tell me how accessible it is.

[Daisymeadow]

Hi Alison. So sorry to hear you have had this diagnosis. The wait for an appointment can take up to 6 weeks, but try not to worry as these benign tumours are generally slow growing.

This is just a general guide, as each is considered individually dependant on size and location and the patient’s age/symptoms.

Small up to 1.5 is likely to be watch and wait. 1.5 - 3 is choice between radiotherapy, surgery or watch and wait. Above that size surgery is the most likely option.

I’m trying to prepare myself after the news I need surgery. Its for the best though. Trust that your consultant will be looking for the best option for you.

Wishing you all the best xx

[Alison_L in reply to Daisymeadow]

Thanks, Daisy. When I had my heart attack, there was a high possibility that I would need surgery, and that terrified me. Fortunately, the surgeon thought it best to try medicine first, and that worked. Four years later, it looks as though surgery might be back on the cards, but this time in my brain.

Good luck with your surgery, when it happens xx

[Daisymeadow in reply to Alison_L]

I’ve done my best to avoid it, but I’m 9 months after diagnosis and it’s not something I can escape any longer 😩 we just have to hope and pray for the best possible outcome x

[Margyr in reply to Alison_L]

It’s so scary and very little information

[Pinkrose1]

Hi Alison, sorry to hear you have had so many health problems and worries. I'm 58 and also lost almost all my hearing in the right side from the tumour. It was classed as large at 3 cm and they said it needed removing. I had the operation 5 months ago, it stopped the tinnitus, ( it's a different kind now that isn't noticeable any more ) and i haven't lost my vision again since, it must have been pressing on the optical nerve as i was losing my vision almost every day. Hope all goes well with you. The surgeons are marvelous what they can do. I was terrified of having the op but it wasn't anywhere near as bad.

[Alison_L in reply to Pinkrose1]

Thanks, Pinkrose. Coincidentally, I've had my standard annual eyesight test today, and the optician got VERY serious when I said I'd just been diagnosed with a large AN. At least my eyes seem fine for the moment.. My tinnitus is a background white noise that doesn't really bother me. The NHS website is a bit scary when it comes to what can go wrong with an op. Glad to hear it seems to have gone well for you xx