Waiting for surgery to remove Acoustic Neuroma don't know what to expect

[5141]

I have had my tumour for 7 years and been on a watch and wait with MRI scans every year but now it has got to the stage it needs treatment I thought I was going to have Radiotherapy but when I went to the consultant he explains it is too big so needs to be removed by surgery could do with some feedback from anyone who has had surgery please ask am terrified

[Ellafen]

Hello, sorry to hear your news. My husband had his removed 2 years ago. It was a very large one due to medical negligence. His operation due to the size was 15 hours, you know in your heart it's not going to be easy. However you will get through it like he did, he went back to work 4 months later. All I can say from watching him is do not give up when your recovering. Be determined to do things when your able and take time when your not feeling so good. You will need support from your family but this will get better. Take help and dont fight it, it's a time for people to look after you as I'm sure you have done for them. It's ok to be scared but the surgeons are bloody amazing and it's a days work to them, another day at the office. Please keep talking to this group it helps. I joined when Jason became ill and even though I wasnt the patient I got lots of support from just reading let alone replies.

Good luck.

Lisa

[SJa2020 in reply to Ellafen]

All the v. Best. But will echo that this forum is great with lots of helpful info & tips.

If you are ok with info just ask away, I will let those with more experience answer.

[Sarah_TBTC Partner]

Hi 5141,

It must have been a shock to hear that not only had your tumour grown after being stable for so long and then be told that you need surgery so it's understandable you are so worried about what to expect. We have some information on our website that you might find helpful which you can find here thebraintumourcharity.org/b...

If you would find it helpful to talk to someone you can call our support line on 0808 800 0004 Monday - Friday 9am - 5pm.

[Bad1]

Hi, it must have been a shock to hear that it had grown so quickly over the space of one year. It’s clear from these posts that some people have different experiences in the NHS, depending on where they live.Therefore it may be helpful to have a second opinion from an entirely different trust before you commit. At the very least it will put your mind at rest that you are not missing out on other available treatment options.

I wish you well for a full recovery