Mystery a.n?

[FatBenny]

Hello, I have a mystery brain tumour! It was diagnosed in January as an A/N, however , rapid growth with odd symptoms have now put the diagnosis in question… does anyone have any suggestions as to what it may be? I have eye problems, near total deafness, balance problems, facial tremors all on the right hand side.

[Jig54]

Hi I had all those symptoms with my A/N and I also had a cyst grow on one of my nerves and I had them both removed nearly four years ago.

[flappers]

Hey, it’s such a stressful discombobulating time. However ( but I’m not a doctor) I would say the scan and the symptoms indicate exactly an acoustic neuroma, from all I know from having one ( diagnosed 2020) and having read and discussed others experiences via BANA support groups and on here. Tell my why you feel the diagnosis is now in question? Is that your worry/feeling or been said by the consultant? Do you have a skull based nurse assigned to you? Which hospital are you under? It’s so tricky not to worry about these little guests we have but try to hold in mind they will NOT kill us, they can offer treatment if they carry on growing and we learn to live with the little treats they offer, with the right support from audiology for the hearing/tinnitus, as well as retraining ourselves around the balance using vestibular physio exercises. I think eye issues are connected to where yours sits on particular nerves, not something I’ve experienced but have read others issues with this. Join BANA and carry on asking questions, you’re not alone. Lin

[DizzyLizzyYorkshire in reply to flappers]

Thank you for this comment Lin - sensible, objective, practical, caring and reassuring - much appreciated xx

[Bizzyhazel]

Hi fat benny . Sorry to hear you’ve a AN too .

I’ve all your symptoms but on my left hand side .

Face and tongue 👅 are numb all day long . I get a really dry mouth too so drinking loads of water .

Just try and listen to your body and have a kip if needed I find it helps a little .

Last balance injection on 25 April then 2/3 month wait for surgery .

Take care fat benny and everyone else out there 🌸😘

[2bedivorced in reply to Bizzyhazel]

You are the first person I've heard that has a dry mouth. I've had one for many years. I also have like a metallic taste and numbness in the mouth too. Thought it might be new medication but was being told it wasn't. I was then diagnosed with AN and had surgery last May 2021. I still have dry mouth and can only presume it's related to the AN since I have about 10% of the tumor which they left behind. Any advice on how to relieve dry mouth? I drink loads of water but that doesn't seem to do much.

[Bizzyhazel in reply to 2bedivorced]

Mybe have chewing gum to hand . Your ahead of me on the surgery front . Hope your feeling good today in the beautiful sunshine . 👍🤔🌸

[Blappers]

Hi FatBenny,

Sorry to hear about your conditions. I also had all your symptoms and is now totally deaf after my first surgery in 2019. My first surgery was not very successful in removing much of my tumour however it did relieve myself of the symptoms I had. Now I have them again in 2022 because it started growing again. I am awaiting my surgery date. From your scan, it looks like your tumour is not that big and generally AN is quite slow growing. Mine is about 4cm in size and has pushed a lot of my cerebrum to one side, so I am a little worried about the surgery date.

Anyway in short, all your symptoms seems typical of an AN. I think it will also vary depending on the position of the tumour and where all it touches, apart from its size. Having vision problems can be a real bummer and may affect your day to day life, hope they sort you out quickly.