Today, we'd like to hear how your acoustic neuroma has impacted your social life.

[Jane_TBTC]

Has there been an impact on your partner? Parents? Children? Friends? Or other extended family members?

[904newton]

I am relatively lucky In that I have a tiny AN and it is affecting my hearing only in my right ear. I do find I get tired and maybe that is owing to having to strain to hear people and now when out I cannot lip read at all because of masks. If there are a lot of people talking or other noise such as music it is much more difficult to hear conversation. I hope this is helpful Jane.

[Shannon_TBTC Partner in reply to 904newton]

Thanks for sharing 904newton. It is really interesting to hear about the impact wearing masks must have, and it not something a lot of people are aware of!

[Basco77 in reply to 904newton]

I can relate to the tiredness but also the facemasks.

Its starting to really frustrate me when I have to say I can't hear someone speak because of the mask and yet they continue to speak low. Today I felt like crying in a shop which i will put down to being tired. I guess people just don't get it in the same way we don't get what others go through

[Pinklady111]

Hi Jane,

I have had a lot of ear pain going through my head and up into my eye although the surgeon said he thinks it may be more to do with TMJ. I have definately been struggling with social things over the years as i have severe hearing loss in the one ear and i miss so much of what is said in a group. it has made me lack a lot of confidence in social settings. my husband and i like to walk but i've been getting very unsteady and giddy on my feet and that also makes me feel vulnerable if i'm walking on a narrow path next to the road.

Just recently i have found i'm getting confused and forgetful and that can be frustrating too but i know so many others are worse off than me so trying to appreciate the things i can do

[Shannon_TBTC Partner in reply to Pinklady111]

Thanks for sharing Pinklady111, I can imagine it is difficult in social settings with lots of crowd noise as it can be hard to focus on one conversation. Hopefully your friends and family understand how your hearing has been affected.

Hopefully walks with your husband makes you feel a little more at ease that he is there if you do feel unsteady.

I am sorry to hear you have been experiencing confusion and forgetfulness. The charity is always here if you want to talk and you can contact us on 0808 800 0004 (Monday-Friday, 9-5) or email us at [e-mail]

Best wishes, Shannon

[Margyr in reply to Pinklady111]

I feel much the same and I wonder is the forgetting things part of this the noise is driving me mad

[Teashop]

Answer to your question.yes the AN has had a big impact on my social life.l hardly socialise at all away from home as although l am almost deaf the tinnitus causes it to be unbearable in environments were there are more then one or two people .my head buzzes and it is exhausting .also my balance is not 100 per cent so bash in to things

[Margyr in reply to Teashop]

I find the same in a group it’s very hard

[louise60693]

Hi, yes, definitely feel tired by the end of the day, I struggle to hear conversation too and psychologically do not feel like long sessions of chatting. I hope this is helpful

[HK104]

I was diagnosed about 6 years ago & my family & friends were greatly upset at the time.

However, it has caused very little difference to my life apart from some difficulty in hearing on that side. Luckily the hearing in my other ear is excellent.

It was good for the neurosurgeon to explain some of the difficulties of the hearing loss though. It explained why my husband and I totally misunderstood each other a lot of the time! I now accept it's my fault, sometimes!

I do worry when I get tinnitus, vertigo & blurred vision or anything that could be linked to my AN.

I currently tend to let it go rather than speak to my GP. I don't know if that's the right thing to do.

[Shannon_TBTC Partner in reply to HK104]

Hi HK104, thanks for sharing this with us. It is great to hear that your AN has caused little impact socially.

It can always be worrying when you notice new or changing symptoms. We would always reccomened reaching out to your GP with any concerns, as it can often make you feel much more at ease. Moreover, if you ever want to speak to a member of our support and information team, you can call us on 0808 800 0004 (Monday-Friday, 9-5) or email us on [e-mail].

With best wishes, Shannon

[Jmerlin]

Hi

I had a 2cm AN removed from my RH side 7 years ago. The main effect was that I was unable to teach full classes of children any more because of lack of directional hearing, imbalance walking around a crowded classroom, and simply not being able to hear them. I was lucky and my employer adapted my timetable and role to compensate for this.

Socially, I do go to big events (eg weddings) when they were allowed (!), but I wear out pretty quickly and often have to go outside for a bit to recover from the noise. In smaller settings I make sure I sit so that people are on my good side, or so that I can clearly read their lips (sorry about the itals!). Difficult with masks now. I keep walking, cycling and swimming and working and just announce to everyone near me in a work setting or meeting that I am not ignoring them if they talk to my RHS. It seems to work!

[DazMac]

It has not really impacted on my life.

I am trying to carry on as normal. I have tinnitus in my right ear from the 16mm x 8mm AN (last Novemeber's MRI). I am due my MRI now. May have to have treatment (Referal to Oncologist from ENT Specialist).

I still go out though, I go to the gym, I go running, I still play football. I am 50 now and was diagnosed in July 2018. AN is growing around 1mm per year.

I do take comfort in the treatment success rates from the NHS website.

Although I am currently buying a house and half the insurance companies have refused to insure me. This has got me down. They are so fickle.

Also, I was insured previously with a company called Bright Grey. I was diagnosed with the AN when I was with them for life insurance. I cancelled the insurance by mistake February 2021 and thought, should I have claimed? I was with them since 2014! Before diagnosis.

Anyway, prior to thinking this, I tried to restart the insurance (you can do this provided your request is within 6 weeks). The customer service was so poor that I just finally gave up.

Kept telling me re-apply on their portal. It is the worst.

But apart from that, I lead a normal life. I think the more happier and healthier I am, the better I am. I find the AN more of a pain in the arse, than in the ear...

Thanks.

Darren.

[Lois_Howell in reply to DazMac]

Loved your final comment Daz!

My AN was removed 18 years ago. My critical illness cover paid out £80k, it was almost worth having the hole in the head.

I just ignore the side effects (as io do anyone who speaks in my left ear!!!) Very handy when it's my husband. come to mention him, he's more of a pain in the arse than the AN.

Keep smiling, don't let the f*****s get you down!

[DazMac in reply to Lois_Howell]

Ahh thank you! Yeah I had another MRI in November and will probably be referred next year as it’s pretty close to the brain stem now. That worried me but it’s another year and trying to carry on as usual.

Ahh I’m so pleased you are doing okay!

18 years ago! Wow! I think we just have to adapt as best we can. I love your attitude to it too! Inspiration!!

Regards,

Daz.

[Lois_Howell in reply to DazMac]

You're welome.How old are you?I was 54 when I had the op, pushing 72 now, still choosing to work (self employed tutor).

Getting my diagnosis was traumatic; GP tried to fob me off with steroids and anti depresants, told him I wasn't depressed but would be if i got fat on steroids. Neurologist also told me I had 'nothing sinister'. Wasnt until i totally lost hearing in left ear that I saw a good ENT man who then referred me to a mate of his (I call him my God) who'd pioneered the removal technique. I was a vis aid for his skills when a bunch of German surgeons were researching and he was off on a work/leisure seminar on a cruise ship off Canadian coast. I offered my services to accompany him as proof of his work, sadly he declined.

There were multiple side effects for a couple of months after op, most serious was that taste buds were affected and wine tasted like cat's P (not that I've tasted the latter), I did lots of practising and got that fixed pdq!

Stay positive, don't be a victim, be prepared to kick arse if you need to.

[Lois_Howell]

I had a 3.5cm AN removed 18 years ago. Total success, minor side effects which no one is aware of unless they speak into my left ear. I did retire from full time classroom teaching but was able to access my full pension on grounds of ill health, win/win.l love teaching and have built a successful tuition business which I'm still doing at 72 years old.

I'm happy to speak to anyone who needs a shoulder/pep talk, whatever.... 07790427185

[Moorside89]

I had my AN removed in 2003. Thankfully I have been able to continue my social life with only a few modifications. I have to ensure I am seated so I can hear with my good ear. I tell people that if it is a very loud occasion I won’t be able to hear them so don’t think I am ignoring them!

As far as balance is concerned I have to concentrate more in certain situations but I haven’t let it stop me from doing things I enjoy like skiing

I have tried a CROS hearing aid. This is useful for small social gatherings but doesn’t help at a noisy event.

I was determined to continue enjoying my life after the AN op and thankfully I have been able to do that.

[Whitneyhouston]

Hi I have an AN and at the moment it is impacting most parts of my life I’m really struggling in social situations because of the deafness and tinnitus, also my balance or lack of has become a problem. I feel disconnected and disoriented all the time.

[PiedCrow]

Hello. My AN was treated by Gamma Knife 2018 but my balance is very poor (compounded by a long ago head injury) which makes socialising hard. I use BI-CROS hearing aids and have found Phonak’s Roger On brilliant in noisy environments like restaurants. It is a sophisticated radio microphone which connects to a receiver on my hearing aid. Quite expensive but worth every penny