I didn't have any surgery.
I was 34 when diagnosed, I am now 74. I wud not take the chance, too many mistakes surgeons make, cut wrong nerve and ur a cabbage for life. I suffer with tinnitus now, have gone thru many stages, vertigo sickness etc..be certain u can't live with AN before u go under that knife..once dun there's no turning back.
Can you advise what the size of your AN was and growth over the years? Thanks
I’m quite shocked by your post. To me it seems very irresponsible. Lots of people have no choice but to have surgery and reading your message will not help those who are already worried and nervous. Also a lot has changed medically in the last 30 years and surgery is safe!
I am one of those nervous people. I was first diagnosed in 2011 had gamma knife in 2012. Unfortunately my neuroma started growing again and now surgery is my only option. My operation in 21/05! Please think before you post!
Hi I am nervous of surgery and hope to avoid it but on BANA there are many folk who have had surgery and live a fine life afterwards. There is risk with any surgery but this surgery saves lives and if it is your only option it's the thing to do. Some people have some facial difficulties afterwards but there are exercises to help with this. Have a look at BANA British Acoustic Neuroma Assoc for peoples success stories. I wish you all the very best. Don't let silly stories get you down, we're stronger than that. Much love x
Had my neuroma operation just over 5 years ago now it was quite large one I can’t quite remember the size but it was at the limit that they set for removal , it was a long procedure as there was also a cyst along with it to be removed which showed up in the scans, I was obviously very concerned about going through this as any one would be but it’s now over and been a complete success I would not have any hesitation to say I’m happy I went through with it
Hello, I have just had surgery, in Kings London, 23rd April, to remove my AN that was 22mm in size & pressing on my brain stem. This was indeed the only option for me as it was unsuitable for radiotherapy & too big. Of course the thought of such major surgery caused me massive anxiety but I didn’t want this thing growing in my head gradually debilitating me. I got very lucky indeed & only had a four week wait from talking to the consultant to having the op. The whole experience at Kings was amazing, every single member of staff involved were professional, supportive, reassuring & comforting. My op was one of the longest, 12 hours, which was worse for the family having to wait to hear that I was ok. My surgeon said it was a text book scenario & everything went according to plan. 93-95% of it was removed, confirmed benign, with the smallest piece left to preserve my facial nerve. The first 3 days afterwards in recovery were, I’m afraid, horrendous. It may be that I had a bad reaction to the anaesthetic, but I’ve never had it before so have no idea. The head pain was the most indescribable I have ever experienced. Try not to set your expectations too high! That said, I was constantly monitored, all medicines to help me were promptly given & our NHS staff were/are incredible. End of day 3 I had the catheter out, end of day 4 I was finally eating, only a cold fruit salad, but I was keeping it down. 7 days post op, as they predicted, I was at home. I felt quite vulnerable being away from the full support of the hospital but I have been ok, take it slowly & listen to your body. Post op I have facial weakness where the nerve is bruised so have to be careful eating & drinking (like a dentist injection) & my balance is slightly worse. I’ve been assured this will improved & I have facial exercise to do. Yesterday I walked round the block where I live which gave me a big boost. I have no regrets at all about elective surgery, but be prepared to feel pretty ill for a few days afterwards. Hope this is of use. B x x
Hi B,
Thank you for your email. You were lucky to get your op so quickly. I'm at The John Radcliffe in Oxford. My AN is, or rather was in December 24mm x 15mm and is also pressing on my brainstem.
My journey has been a bit longer, lol. AN was discovered in 2011 and I was watch and wait with yearly scans. First scan 6 months later showed significant growth and I was treated with gamma knife at Sheffield 3 months later.
Yearly scans followed and then after my 6 year post GK scan, I was informed that it was growing again. 
It has been steadily growing and so surgery was advised last November with surgery to be booked in December. I requested the op after Christmas and so it was booked for 22nd January 2021. Covid got bad again and op was cancelled and I was told I should hear from hospital in 4-6 weeks.
It was then booked for 30th April but cancelled as both consultants weren't free. I am now (fingers crossed) booked in for 21st May.
The hardest part has been getting myself mentally prepared and then having op postponed. I understand that it can't be helped but it is so frustrating and my symptoms are slowly getting worse.
I have just started reading Sickbed to summit by Sara Crosland. She mentions the first few days being horrendous, so the book and your email are preparing me as much as possible.
Well done for walking around the block, I'm sure before you know it you'll be walking much further.
Please keep me updated on your progress.
Take care and all the best
Lisa x
Everyone is entitled to take there own path, but a lot comes down to its size, growth rate and position of the tumour. Any brainstem compression can lead to you being cabbaged or dead. So weighing up pros vs cons is a big consideration.
If anyone can stomach it, it’s worth watching edge of life season 3 episode 2 at the 30 minute mark and the 43 minute mark.
I also think this post is irresponsible. I am having surgery in three weeks and this sort of negative ill-informed comment is on here to provoke.
After many years following surgery I guess it depends on the symptoms an I would say balance is very important. Mine is still bad. Hope things get easier for you x
Surgery 1st April 2019
Regrowth after gamma-knife?
Odd metallic taste in mouth & shudders in head
