Susan

[Healthcare23]

My husband has been diagnosed with an acoustic neuroma , he has to have surgery because it’s too big for radio therapy .I’m so worried about how he’ll be after the operation and whether he’ll return to full health? His consultant has already told him that he’ll be off work for at least 6 months.Is anyone going through the same or been in this position?

[MattBusby]

I would recommend you join B A N A. British Acustic Neuroma Association. Regards Mike

[Healthcare23 in reply to MattBusby]

I will MattBusby , thanks .

[Daisymeadow]

Hi Susan.

I’m sorry to hear this. It’s a difficult one to answer as everyone seems to have their own individual journey through this. I can share my own. I had surgery in November and am recovering very well. In my opinion 6 months is about right. I know some people return to work earlier but there is so much to adjust to and fatigue is a real problem. I am only part time at the moment. I also had to change career. Your husband will find things different after surgery with the loss of his hearing. I find certain situations a lot harder to cope with than others. Crowded noisy places are very hard for me. So life is a little more challenging. Things are different and I’ve had to make a some adjustments, but life is still good. I consider that my surgery was very successful. I’m still having physio to help with my balance but feel that I’m improving- slowly. That’s the key to coping with this process. Accept that recovery is very slow and celebrate each milestone success. Happy to answer any questions. Sending all my love your way.

[Healthcare23 in reply to Daisymeadow]

Thank you for sharing your experience Daisymeadow . He is already deaf in one ear and has been for roughly 8 years so I guess that won’t change for him after surgery. That is the only symptom he suffers with as a result of the tumour .

[Frizby]

Had a large Neuroma removed 2 years ago, was off work 6 weeks and got board. Persuaded my employer to ease myself back into work going back first part time and back full time over a period of 9 weeks. Fatigue was a big problem as Daisymeadow says. I was fortunate that I was already working from home due to lockdown and performing desk based tasks, manual work may need considerably longer rehabilitation.

My advice is go at your own pace. I am totally deaf in my right ear and find it difficult to follow conversations in meetings and have found CROS hearing aids a help (don’t go buying them as you should be able to get them on the NHS (bit of a wait though)) .

Hope all goes well.

[Healthcare23 in reply to Frizby]

Thank you for the advice,Frisby. He’s actually in the process of getting a hearing aid , sounds like your hearing is exactly like his , I have to sit on the side of his good ear , otherwise I’m constantly repeating myself. He’s a team leader in the steel industry and his job is very physical so I’m hoping his fitness will aid in his recovery , just know he’s going to struggle with not being able to do much because he’s always on the go but he’ll have to be patient, judging by what you’ve said .

[MimiJay]

Hi Susan, as Daisymeadow says everyone’s experience is unique, but here’s mine.

I had surgery in December, the surgeon managed to remove all of the AN and I am progressing much better than I ever hoped. Although I am making a good recovery I have decided to retire as I don’t think I would be able to cope with my job (which is pretty stressful) and the daily commute. As the others have said, fatigue is my main problem, it takes so much more energy now to do things I took for granted before. I, too, struggle with noisy/crowded environments; I used to love going to concerts but find it very difficult now listening in mono rather than stereo! It doesn’t stop me going though.

In the early days post-surgery, I tried to focus on what I was able to do, rather than what I couldn't do and every week I could see some improvement. I started going out for daily walks as soon as I was able (holding onto someone initially until I was able to walk by myself) and this helped enormously. My husband used to time our walks so I could track my progress. I am still attending physio for my balance and facial palsy. My balance is still off, especially when I’m tired, but better some days than others. I have started going to tai chi classes which helps. Although the palsy has improved significantly I have now developed synkinesis (unwanted eye movements when I move my mouth) which my physio said is a very common occurrence 4-6 months after surgery, so I am doing facial exercises to try and counteract this.

Look after yourselves, it’s a worrying time for you both. I hope your husband doesn’t have to wait too long for his surgery, the waiting is the hardest part. Feel free to ask me any questions. Best wishes.

[Healthcare23 in reply to MimiJay]

Thanks for telling me your experience MimiJay . You’re right, it is a very worrying time . I think it’s just fear of the unknown !The consultant told us on Tuesday that it will be July for the op so we’re just waiting for confirmation now . We were going to Greece on the 7th so we’ve had to put that on hold . He’s just frustrated because he feels fit as a fiddle ! .

[Trainmad134]

Hi susan,My husband is waiting for his op scheduled for late September, his tumour is too large for radiotherapy alone, so the op will remove/reducevthe tumor, they said they are unlikely to be able to remove the entire tumor so a dose of radiotherapy will be zapped in to stop it regrowing. The op is, im afraid up to ten hours, but performed by the best liverpool/uk has to offer, he has been told recovery times vary, he'll be tired a lot of the time, but will gradually improve with the help of exercise, good diet, support etc. I know its scary, we are both very anxious, but all we can do is face it, accept it has to be done and make plans for the future. I hope it helps that he's not the only one and we all wanna get through it. Love Trish

[Healthcare23 in reply to Trainmad134]

Hi Trish .Sounds like you’re in the same position as us . My husband was also told they weren’t removing all of the tumour. It is a very worrying time , let’s hope everything goes well for us all .

[GrandmaAnn]

Hi love, i had surgery in 2014, and was out of action for about 3 months. I am deaf in one ear, loose balance when tired and have annual Mri scan as a small piece of tumour was left, to preserve my facial nerve. Other than that, life is completely back to normal, I'm 55 yrs old now. Try not to worry, the surgeons are very clever skilled people. Mine was Mr Deniz, he recently appeared in the BBC series about Leeds General Infirmary (Lgi)I have to say i felt very well looked after before and after my surgery.

Sending you both good luck and best wishes x

[Healthcare23 in reply to GrandmaAnn]

Thank you GrandmaAnn , pleased everything went well for you and you’ve made a good recovery. Best wishes to you .

[Maybaby61]

I am 62 and had a large acoustic neuroma removed on 2 May. I ha e learned how yo walk again, just take things one day at a time.

[Healthcare23 in reply to Maybaby61]

Thanks Maybaby61 . Did you have the whole tumour removed . How long were you in hospital ?

[Maybaby61]

They had to leave a small bit. I was in hospital 6 weeks but 4 weeks was for physio

[Healthcare23 in reply to Maybaby61]

did you have facial palsy ?

[Maybaby61 in reply to Healthcare23]

I did have some facial numbness still do but nothing visible

[Healthcare23 in reply to Maybaby61]

thanks for the info 😊

[Ruscomber]

Hi - it depends on the extent of the op but speaking from personal experience 6 months seems about right. I had surgery last year for a 4.5cm tumour which was pressing on my brain stem as well as interfering with nerves - I had to take a heavy dose of steroids for 3 months leading up to the op due to the effects the tumour was having on me which greatly impacted my recovery. I had to have two ops - 15 hours for the tumour removal, and unfortunately due to a CSF leak another 6 hour surgery 10 days later. For 3 months after the ops I could barely function and was made worse by having bad double vision. But then suddenly thing improved markedly, my eyesight, strength and balance improved a lot, and I started work again after just over 5 months - but it is completely home and computer based. As other have mentioned, fatigue is an issue and I still suffer from it 9 month on, as well as finding noisy environments very uncomfortable, my head spins a bit when having to concentrate hard or do physical activity for more than about 45mins and I still have bad tinnitus in my deaf ear. On the plus side, I don’t have hardly any other side effects - no facial palsy, no physio required any more and now back in the gym 4 or 5 times a week. I really hope it goes well for you and speaking from my personal experience you can expect good recovery but just take it easy on yourself if it isn’t as quick as you hope.

All the best.

[Healthcare23 in reply to Ruscomber]

I think it’s going to be a case of waiting until the op is over because everyone has different experiences, just a very worrying time !

[Ruscomber in reply to Healthcare23]

You probably find the time leading up to the op is more worrying than when you get into hospital - once you are there you just want it done and get home! To be honest, my tumour, it’s size, position and side effects were as problematic as you can get (even my brother in law who is an orthopaedic surgeon confessed to me recently that he was really worried about the surgery given these issues). I have made a pretty full recovery with only a few side effects now so keep positive - and just be easy on yourself in those couple of months after the surgery.

[Healthcare23 in reply to Ruscomber]

Thanks for the advice , it’s actually my husband who is having the surgery, not myself but it is helpful hearing everyone’s experiences .I think it’s just fear of the unknown, like you say , once the surgery is over we can then get a better idea of what we’re up against !