Upcoming hospital appointment - Acoustic Neuroma ...

Acoustic Neuroma Support

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Upcoming hospital appointment

EssEmBee profile image
4 Replies

I was diagnosed with a 25mm AN last October. It totally came out of the blue. I'd been suffering from Long Covid for over a year and I started to have dizziness and body veer to the left when walking. I was also struggling with being in a room where multiple conversations were happening, as I couldn't filter the noise. I assumed it was just a symptom of Long Covid until the ENT referral and subsequent MRI. Getting the results over the phone was a real gut punch.

I just been waiting since then. I had a few calls with ENT at the local hospital after chasing them and while waiting for an appointment. I've pretty much got over Long Covid, so my AN symptoms are a bit clearer. At one point late last year I developed a stammer, which I was told wasn't a recognised symptom of Long Covid or AN, but presumably my brain couldn't cope with both! Thankfully the stammer has gone, though when stressed, I can stumble my words.

I've got a hospital appointment later in May, and have to say that I'm more than a bit nervous. I've read so much on the internet about post treatment symptoms and have resigned myself to the fact that things may be worse than now after treatment. I keep reminding myself that treatment is better than the eventual outcome of ignoring the growing tumour.

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EssEmBee
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Karbob profile image
Karbob

Hi sorry to hear about your symptoms. Most AN's give symptoms with varying degrees. However not everyone is operated on. Most are just monitored every year to see if is likely to cause a problem. Hopefully you will be amongst those and only Mri scan will be required. Hope all goes well. Try to stay calm as that seems to make symptoms worse. Karen

Ukulele21 profile image
Ukulele21

hello sorry to hear about your symptoms. We all have varying degrees of symptoms. Do as folks say and try to stay calm. COVID was a real 🤬 but if you are coming out of it. That is a plus.

Wishing you well and you get the outcome that makes you feel better.

Regards

flappers profile image
flappers

What a rubbish time you’ve been having! I just want to say though, that although symptoms can increase for a bit post treatment, that absolutely isn’t always the case. Hopefully the team will give you advice on the best course of action for you. Symptoms are often worse early on until our brains start to adapt… I had fractionated radiotherapy on my 25mm squatter… ( in three sessions over 5 days, 19.5 grays total) and whilst I’ve had a few wobbles, and had times where I felt like I was wading through treacle, overall WAY WAY WAY better than I feared! Remember you’ll not see much posted on support groups etc from those who had treatment and didn’t have any problems at all, as they are just very busy enjoying life and not thinking about their ANs. Many don’t have treatment either, as no growth occurs after discovery. Whatever it is you need, you’ll find great support from Brainstrust, BANA and the British Acoustic Neuroma support group on Facebook, if you seek it out. You’re definitely in the worst scary bIt stage, but you will adapt to the ‘gifts’ of living alongside these little squatters! Let us know how you get on… Lin 💐

bypass profile image
bypass

First rule is "Don't panic"! Firstly it's not Cancer, secondly they are slow growing. As for treatment, yours is the perfect size for fractionated radio-surgery which is usually given using a Cyber-Knife machine these days. This usually results in no additional symptoms or issues and has little to know recovery time. However, you will probably need to ask to see TWO specialists, a microsurgeon AND a Radio-surgeon as in most circumstances both will say that their treatment is best for you! You need to listen to what each says about his/her own treatment and then decide for yourself. Good luck

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