Has anyone had surgery on a small AN

[JDN57]

Recently diagnosed with 11mm AN after losing hearing overnight and getting balance problems a few days later. Still waiting to speak to a consultant but wonder if my AN is too small for surgery.

[Leodo]

Hi, It may not feel like it but you are lucky, they have caught it early. Maybe prepare yourself as they may suggest watch and wait to see if it is growing fast, or maybe not at all? The position is a big factor as is size. If they do offer the choice invasive surgery would probably be the final option. My wife had gamma knife on a 20mm+ AN four years ago now and is doing fine. The procedure can have an initial reaction of a slight increase and an increase in csf but this can all be handled. Keep a close eye on any side effects, facial palsy, eye operation, etc and flag anything immediately. Hope this helps and good luck

[flappers in reply to Leodo]

Hi, it’s a horrible time and I remember well after diagnosis of a 15mm just wanting it out of my head! Symptoms of screaming Tinnitus and hearing loss, the odd twitchy lip and now some pain in the mastoid area… balance okay other than I do notice walking home at night I do struggle a bit keeping to a straight line. Could be the Prosecco though!! So, after a year and a bit on watch and wait, tiny growth to 17mm I am happy to carry on without surgery or radiotherapy as long as possible. It may stop growing, the impact of treatment can be worse than the symptoms I get now so all in all think for me the ‘do no harm’ approach is best. The surgeon Rupert at Kings said’ while it’s safer to leave it we do, when it’s safer to remove, we’ll do that’ I know others that asked for surgery early on. I’m happy to wait, in the Hope maybe intervention isn’t needed, but when/if it is, then I’ll be more accepting and well informed of the impact and outcomes. It’s not a magic solution but there is treatment when we need it. And it’s benign so it’ll not kill us! Give yourself time, join BANA. Read about other experiences ( via BANA or other British support groups like this) Try not to panic. Find the things that help you. Good luck! Lin

[Margyr in reply to flappers]

Great advice it’s the noise kills me

[flappers in reply to Margyr]

It’s hard for that not to dominate out every living moment. I had some hypnotherapy for the tinnitus and it helped me somehow be more zen about it. It never ever quietens but bothers me less and less, most of the time. I hope you find ways to live alongside it. It’s pants x

[flappers]

Hi, it’s a horrible time and I remember well after diagnosis of a 15mm just wanting it out of my head! Symptoms of screaming Tinnitus and hearing loss, the odd twitchy lip and now some pain in the mastoid area… balance okay other than I do notice walking home at night I do struggle a bit keeping to a straight line. Could be the Prosecco though!! So, after a year and a bit on watch and wait, tiny growth to 17mm I am happy to carry on without surgery or radiotherapy as long as possible. It may stop growing, the impact of treatment can be worse than the symptoms I get now so all in all think for me the ‘do no harm’ approach is best. The surgeon Rupert at Kings said’ while it’s safer to leave it we do, when it’s safer to remove, we’ll do that’ I know others that asked for surgery early on. I’m happy to wait, in the Hope maybe intervention isn’t needed, but when/if it is, then I’ll be more accepting and well informed of the impact and outcomes. It’s not a magic solution but there is treatment when we need it. And it’s benign so it’ll not kill us! Give yourself time, join BANA. Read about other experiences ( via BANA or other British support groups like this) Try not to panic. Find the things that help you. Good luck! Lin

[Gardener21]

Hello… you have found out about it early, as others have said in the replies, so you have options & the time to come to terms with it.. I opted for immediate surgery, personal choice, mine was 22mm & surgery would have eventually been inevitable as it was just starting to press on my brain stem. Ask questions, gets answers & hopefully you will find a way through.. it’s a horrible tumour to have, it’s rarity is difficult enough, but usually they are benign. Good luck! Xx

[JDN57]

Thanks everyone for their replies, it's good to know others who have been in the same situation. I have my first telephone appointment with ENT consultant on 17th January. My major problem is the balance and motion sickness. I am having trouble functioning day to day to carry out normal tasks. I'm covered in bruises from walking into things and fallen over several times. The only good thing is the motion sickness helps with the diet!!! I've been told they won't look at my hearing loss - almost all of it overnight - until a decision has been made about treatment. I don't have any facial weakness but within days of the hearing loss I also lost quite a lot of vision in the right eye - coincidence but still worrying when its on the same side. Again ophthalmics won't do anything including new prescription until treatment decision has been made. I will just have to wait and see.

[rcunliffe in reply to JDN57]

Exactly a week post op from 12 hours to remove a 24x28mm VN that was partly cystic. I can text already! Who knew that it was so hard to walk and move you head and eyes at the same time!! Going home today. Worst thing apart from that is the horrible pre and post op taste. Diagnosed late with facial numbness but no deafness until post op took it out.

[NewBoy]

Just seen my specialist and my AN has grown from 15mm to 18mm and it is a wait and watch policy as it may stay at that or increase slowly, but until you start showing signs of side effects they are very reluctant to do anything. Hope this helps and good luck

[JDN57]

Just a quick update. I had a call from a consultant today to say that I was put on the watch and wait list. MRI in October to see growth rate would be done. I was told my balance should improve and that I could now be fitted for an hearing aid. Slightly miffed that he questioned if my hearing loss was as sudden as I said. he asked if I had worked in a noisy environment or to lots of load music. Emphatically assured him I never put back ground noise on and as a PA all my life I wasn't exposed to high noise levels. He said it was unusual.

I feel better than at least I now know there is a plan in place.

[Daisymeadow in reply to JDN57]

I was told that hearing loss could happen over night or very gradually but that it’s inevitable.

[Myangel95-12]

Hi there, I had hearing loss over night and balance issues so not uncommon side affects I was also 36 weeks pregnant at the time… I had mri at local hospital then was sent to addenbrookes where I had hearing test and aids, relaxation pillow with therapy sounds to help tinnitus and they obliterated my balance stem to straighten me up and I could walk unaided again..that was 10 years ago I was 34… I had my routine mri in December 21 and have just been recalled to see the neurosurgeon next week as my AN has finally grown and they need to discuss the future treatment/plan, I’m not sure what mm it is now and as I suffer memory issues I will have to wait until I go so they can tell me what it was and what it is now.. try not to worry too much, I e lived with it 11 years I do have to be aware when walking etc but there is hope and relatively lead a normal life apart from the tiredness I do t handle too well. Hope this helps and good luck with everything… I will update this after I have been for my appointment and let u know the outcome x

[Rogerthedodger]

Hi, after many years of wearing hearing aids with gently deteriorating hearing loss in both ears I had a sudden and drastic loss in my left ear last year, unfortunately this was previously my best ear by quite a big margin. It took nearly a year during Covid to get a diagnosis by way of an MRI in October last year. I was informed of the presence of the AN by letter but still await my clinic appointment which is currently scheduled for 25th Feb so at the moment I've no idea how big it is or what the treatment options might be. I now realise that this may well have been the cause of balance issues that I have had for quite a few years so I'm wondering just how long the little blighter might have been working it's evil ways in there! I have also had a lot of problems with vision on and off for a few months and getting much worse recently.

I'm pleased to see that they are now dealing with a hearing aid for you - this was the first thing that they did for me.

I strongly suspect that even if my appointment takes place on the 25th (they don't sound too confident about that), it will be watch and wait for another six months.

Trying to stay positive but it's hard in my seventies!

Good luck with your 'journey' through all this !

[Margyr]

Iam in Ireland and nobody seems to know much about AN don’t know any one that had surgery