13 Year Old, 8cm AN

[MacMill]

Hi all, thought I’d share my story.

I was suddenly diagnosed with a 8cm AN when I was 13. I was experiencing a few symptoms, dizziness, nausea when going upside down, deftness in 1 ear. (The doctors were stunned how I didn’t have much worse symptoms.) I didn’t think much of it being a 13 year old!

3 days later after getting a MRI, I had 2 surgery’s 2 weeks apart. I was very lucky after the surgery to have minimal side effects, numbness in half my face, (still to this day) and a wonky eye that I had fixed a few year later.

the tumour was gone but the doctors mentioned they might have left some residual tumour due to protecting my nerves.

13 years later (I am now 26), it has been a slow growth coming back from the residual tumour that was left there. I have had follow up MRI’s every year to keep a close eye it it’s growth.

In 2021 It had grown to around 18mm, so I had the gamma knife radiation to try stunts it growth. In November 2022, I had another scan. The scan shows still more growth of 25mm now, they have suggested while I’m still young, to try remove the tumour by surgery again, which will happen sometime in the next month or so.

Definitely scary as i am older and have time to ponder on the fact that I need surgery again, and I now know what is to come, but it has to happen. I believe I will be fine, but main concern would be the side effect that can come after surgery.

Also, does anyone have any suggestions / medicine that can help be beneficial when preparing for the surgery. E.g anti inflammatory stuff or any other things that may make things easier.

Thank you 😊

[Maybaby61]

I am also waiting for surgery for a 5cm AN and am feeling rather nervous. I was due to have surgery on 20th December but unfortunately tested positive for covid so have had to wait 7 weeks for a new date. The left side of my face has numbness, I am almost totally deaf in my left ear, my balance is now very dodgy and I think it is starting to affect my throat. I am quite a few years later on in life than you. I hope everything goes well for you. Take care

[MacMill in reply to Maybaby61]

thanks for your reply.

Once I had surgery the first time when I was 13, I noticed I got some of my hearing back and also noticed my balance got better again.

Hopefully once they remove your tumour it relieves pressure and you gain some of this back.

Hope all goes well for you too!