Surgery postponed

[Bullpenn]

I recently got diagnosed with a large acoustic neuroma of 2x2.7 cm.

I spoke to my consultant yesterday via the phone and she said surgery is the next step. The only problem is because of the Coronavirus it won’t be till we’ll over 6 months. I’m on the waiting list but it’s all very scary.

I am 33 with three young children 5 and under. I’m glad it’s not the C word and feel very fortunate but I worry about my face.

For the people that have had surgery on here, did you get facial paralysis? If so what is the next steps after that?

I have lost hearing in my left ear I have tinnitus and my balance is beginning to be effected.

Any advise would be brilliant.

Also I spoke to the neurologist consultant and she said we don’t classify at high risk but I’m staying in anyway.

[Lizbav]

Hi

I’m sorry your surgery has been cancelled. I had surgery about 3 years ago. My surgeon always planned NOT to remove it all due to the risk of facial paralysis and luckily I didn’t have any.

I have got facial numbness but had this pre surgery.

I had the translab type of op so hearing was destroyed as this approach reduces the risk of facial paralysis. I did have gamna knife radiotherapy a year after as they had to leave more of the tumour than they wanted.

I had mild balance issues pre op but post op that took about 6-8 weeks to recover and would say it’s about 90% back to normal.

So I now have a bone anchored hearing aid (BAHA) which is good.

Hope this helps let me know if you want to know anything else.

Stay well

[Bullpenn in reply to Lizbav]

Thank you so much for replying and telling me your story. It’s so nice to hear what is in store. Xx

[Teashop]

I in similar position l was meant to have surgery on 19 march to remove large Acustic neuroma but surgery has been cancelled l to have tinnitus and balance prob and numbness on face and lips the tumour is pushing into my brain stem l am quite concerned .we just have to wait .2 other people were cancelled at the same time as me so we are all the same boat. Fortunately this is not cancer and it is slow growing .try not worry as l feel that will only make things worse for us.x

[Purplemonkeys in reply to Teashop]

Hi, I was just wondering how much notice they gave you when they cancelled your operation? My husband is due to have his tumor removed on 6th April and we are assuming it will be cancelled also. Although we haven’t had that confirmed as yet. Thank you and stay safe x

[Teashop in reply to Purplemonkeys]

8 days notice for me but only 1 day notice for the patient who was having op before me.my surgeon had been in contact with an other surgeon who had coronavirus.l haven't had any notice of another date and don't expect one as they have now stop cancer ops and chemotherapy for two weeks.l am a little concerned as to when l may have op.maybe yours won't be cancelled.peace be with you.

[Bullpenn in reply to Teashop]

Hello thank you for replying, I didn’t even get a surgery date I only got diagnosed at the beginning of March right before this outbreak so I have a very long wait. I wish you all the best with your surgery xx

[KatIng]

Hi, I had my AN diagnosed last March and in July I had to get my blighter out. It was over 3cm. Im now 37 and also have 3 kids now they are 10, 8 & 6 two are on the autistic spectrum. I was in hospital for ten days over 2hr away. Tbh the surgery is not that bad, the bit after when your bored out of your brains and a bit weird with all the medication is the worst, but then it doesn't last. It's a slow growing tumour so you'll be fine for a while re surgery, otherwise they'd be getting it out now. I have now since surgery ballance problems worse than before but I'm seeing a physio to combat this, I'm totally deaf in one ear, I have aids for this and I have a bit of palsy to, not too noticeable though. My AN is now only 1cm. However, the bit you don't realise is the fatigue, I still have nanna naps now. I build myself up to going for meals or a night with friends and I know the next day or even after that I'm going to be resting. My legs for example can walk miles, but my head with all the concentration of speech, looking at things, balance and general concentration can be too much. Anyway hope this helps someone,

[Bullpenn in reply to KatIng]

Thank you for replying to me, how do you find it all with the kids? You really have your hands full.

I haven’t explained it yet to them I got all that to come.

I only have mild symptoms at the moment so it’s all a bit of a shock that I’m trying to ignore. I just want it out too tbh too but I completely understand why they can’t schedule it.

That is good they can combat your balance with physio I thought once it was gone it was gone. What have they said about your facial palsy is that something physio can help with?

Sorry for a million questions it’s just nice to be able to ask people who have been through it. Xxx

[Silversmith2000]

Hi, I am almost 1 year post op, my hearing is gone in that ear but it is not so noticeable, my facial palsy is virtually gone, my balance is now excellent (all being taken care of quite happily by the other side), that only took about 4 days after the op to get sorted. I have no tinnitus, I barely even remember I had this tumour (before the op I had balance problems, tinnitus, numb face, strange taste).

I have written full posts on here if you want to read them.

Try not to worry, as others have said it is a slow grower so you should have time enough for this.

Best wishes for you at this difficult time.

[Hzw1994]

Hi, I am 25 with 6 kids and I have a 4cm AN due to be removed in August. Fingers crossed this is all over by then and it goes ahead. I am deaf in my left ear, pins and needles and numbness in my left side, balance issues and it is massively pushing into my brain stem.

I am distracting myself with the kids at the moment otherwise everything would get too much. Good luck

[handmaid]

It may be worth checking out Gamma Knife, Royal Hallamshire Hospital Sheffield has a great site packed with information. This is a non surgical option........... its really worth a look.