why did I not go sooner

[Jayme48]

hi, I have a large (3cm) acoustic neuroma diagnosed this week. I will find out the recommendation in 2 weeks. I always put my loss of hearing and tinnitus down to stress. But then I started getting a fullness feeling in my ear and had a hearing test and MRI. It worries me about surgery and the not so good stories.

It’s been one stressful situation after another for years and I never thought it could be something more serious but I’m annoyed with myself that I never went sooner as maybe I would have more options.

[Colejoe1]

I also had a 3cm AN with very few symptoms. I had surgery in 2019 they removed most of the tumour leaving a small remnant on the facial nerve.

I am so grateful to my surgeon and his team for the normal life I continue you live

It’s amazing what they can do

You will come through this the worst part is the wait

[Jayme48 in reply to Colejoe1]

thank you for your comment. I really hope for the same outcome too.

[SD115 in reply to Colejoe1]

I'm so glad you have had a fantastic outcome. Can I just ask how long was your recovery after surgery, in terms of being back to 'normal', going back to work etc ?

[Colejoe1 in reply to SD115]

I returned to work 3 months after surgery I walked daily and did yoga to help regain balance along with lots of rest full sleeping although the first couple of weeks after surgery I did very little.

It was a slow process with a little improvement each day

[whitefishbay]

The wait is hard. At least you can ask fellow sufferers about their experiences. I too am waiting for my ENT apt and their plan for my growing AN. Best of luck.

[Freddy1000]

Hiya , so sorry to hear of your bad news, i very much doubt that going earlier would have been any different outcome, they are extremely slow growing tumours so don't beat yourself up about it , mine was 45mm and left me with facial palsy and other problems but this was back in 1988 aged21 , technology has moved on a great deal since then and many more options will be available to you and the outcome will be much better for you.

I had a similar scenario in ‘why’. Because 3 years before my diagnosis i was a pedestrian in a car accident and hit my head on a tree , they never scanned me and for a while i thought if only they had and the tumour was found things would have been different for me, I eventually asked my neurosurgeon this question and he told me this was unlikely as to the slow growing nature of the tumour.

I hope this helps a little for you and wish you all the very best, please re-post of how your journey goes on ads its good to talk and share especially in these moments .

[Jayme48 in reply to Freddy1000]

thank you for your reply. How did you cope with the facial palsy and has technology been able to help you with that ?

[Freddy1000 in reply to Jayme48]

i couldnt come to terms with the facial palsy and still struggle with it however im more used to it now and accepted it, ive had many facial ops since to improve symmetry and this has helped, many ppl say to me you look ok and dont know why i keep going down that route, i think in the back of my mind im going to get perfection , but it aint gonna happen lol there are techniques all the time coming up and i make myself a guinea pig for it i guess and my plastic surgeon is understanding, 1 bonus is im 55 and get face lifts and botox regularly 😊

Im still under monitoring with scans every 2 years as the surgeon was unable to take all the tumour out due to the close proximity to the spinal chord and it has regrown twice more in 34 years , im an unusual case according to them lol,

Anyway be positive and you will come out the other end with that positiveness.

[Pinkrose1]

What a shock for you! Mine was the same too, it was thought to be TMJ symptoms for years until I had the MRI scan and showed large AN. I had my surgery 2021. The thought of surgery was terrifying to me but I was overly anxious about things, you will be fine and in safe hands.

[Jayme48 in reply to Pinkrose1]

how was your surgery? I hear it’s hard and comes with potential problems after surgery.

[Pinkrose1 in reply to Jayme48]

It was nothing like how traumatic i was imagining it. I thought i was going to wake up in absolute agony with head pain but hardly had any. The worst for me was the sickness. On coming home i had facial paralysis set in but it wasn't permanent and i have the use of that side of my face again now, no one would ever know i had had that happen. The only problem left from that is dry eye so i have to have drops every day/night. My balance is still off but hopefully that will keep improving. I go walking every day and don't use aids.

[MimiJay]

I had surgery on a similar sized AN in December 2022 at Addenbrooke’s. The surgeon managed to remove all of the tumour thankfully. I had double vision for a couple of days post-op and facial palsy that lasted for many weeks, but the facial exercises helped enormously and it’s now undetectable. I was up and walking (very slowly) by day 4. My balance is still off but going out walking every day helps and I’ve recently taken up tai chi which was recommended by my physio. I use eye drops/ointment day and night for my dry eyes and I still have numbness and tingling on the left side of my face but it’s early days so this should improve. I still get very fatigued so have to try and pace myself, but overall I’ve recovered much better and quicker than I’d ever hoped.

Stay strong - the waiting is the hardest bit - and good luck.

[Jayme48 in reply to MimiJay]

are you able to go back to work and drive? I am at Addenbrooks too. Who was your consultant (only if you don’t mind saying)?

[MimiJay in reply to Jayme48]

I don’t drive and I haven’t gone back to work yet (because of the fatigue) Matthew Guilfoyle was my consultant - would highly recommend him

[SD115 in reply to MimiJay]

You do sound like you are tackling this with a very positive mindset. Good for you! I am wondering if you have an idea how soon you will be able to drive and work again? I'm just at the beginning of my journey and have no idea what's to come, but my work life in the future is already worrying me.

[MimiJay in reply to SD115]

I don’t drive and I’ve decided to retire from work so I can’t really give you an answer you I’m afraid. I get tired very easily and wouldn’t be able to do my usual commute and a full day’s work at present. Also, doing a lot of talking makes the facial numbness/tingling worse and my eye gets very dry if I spend too long looking at a screen.

Do you know yet if you’ll need surgery or if other options are available to you? Good luck

[Robbo2023]

Patience, it's hard. Find your way.