Acoustic Neuroma

[Pinklady111]

Hi All, I'm 56 and 2 weeks ago had the diagnosis of acoustic neuroma and am seeing a neurosurgeon tomorrow for surgery/radiotherapy. My letter says its 27 mm tumour. I have severe hearing loss as a result in one ear. I am terrified of the surgery/treatment and really looking for some encouragement and support in success stories/recovery. Thank you to anyone who can help.

[Lois_Howell]

Hi,

I had a 3.5 tumour surgically removed 15 years ago, my left ear drum was sacrificed too. It was no use to me because I had, like you, already lost all useful hearing in that year. Apart from being deaf on left side, significant tinnitus and a numb, tingling sensation around my ear I'm just fine! My life was back to normal within 6 weeks of surgery. Don't allow yourself to be a victim. Looking forward to 70th birthday in a few months. Good luck x

[Pinklady111 in reply to Lois_Howell]

Thank you, that was a good recovery time. How do you cope with the tinnitus? I have only mild at the moment and didn't realise it could be made worse by the surgery.

[Lois_Howell in reply to Pinklady111]

You just get used to the tinnitus, I can't say I'm unaware of it, people live with all kinds of conditions which I'm sure are worse.

It helps if your frame of mind is 'just get on with it!' Rather one of being a drama queen.

[keithzx12r]

Hi Pink Lady. I, like you had my AN diagnosed in my early fifties. I had my own small business at the time which caused me a lot of worry about what will happen to it should I not be able to manage it after the op. Post surgery I lost my hearing on the tumour side but I have a cross hearing aid which helps with conversations. So now I will be 84 next month an my diamond wedding anni is next week. These events I would not have reached without the surgery. Just try and keep positive and know that this is something you have to go through for you and your families sake. Best wishes. Keith

[Pinklady111 in reply to keithzx12r]

Thank you for your positiveness. Also I was told today that I would lose all hearing on that side so cross hearing aid sounds a good option. Congratulations on your diamond wedding anniversary

[904newton]

I have a much smaller AN which was discovered after a sudden hearing loss I am in a watch and wait 🙏 I have had major surgery in 2019 which lasted 10 hours I was terrified and all went well I had rectal cancer which has all been removed 🙏 the surgery went well I would say get yourself as fit as possible and write down all questions and worries so you can discuss them 😘

[Pinklady111 in reply to 904newton]

Thank you and glad you are free of your cancer now too

[bypass]

And make sure you get the opinion of a Radio Surgeon as well. Without ALL the information you cannot make an informed decision. I was treated 22 years ago and you can read my story here anarchive.org/chris.htm

[Pinklady111 in reply to bypass]

Thank you bypass

[Tabbycat]

Dear Pinklady

I am a retired primary school teacher. I had a right side acoustic neuroma diagnosed in 2014 when I was 61. I was on wait and watch for 4 years with annual MRI scans. Each year the tumour grew, so I had Gamma Knife Surgery in 2018. I have had two MRI scans since which showed my tumour has stopped growing.

You can do this! Write down all your questions for the neurosurgeon. If at all possible take someone with you, they give you a lot of information at these appointments so it's helpful to have someone to talk to afterwards and to give you some support.

Try to stay fit - good diet, plenty of sleep and exercise - so you can cope with whatever happens next.

Let us know how you get on.

I will be thinking of you,

Tabby

[Pinklady111 in reply to Tabbycat]

Thank you Tabby for your advice

[Soxyboy]

Hi there.

I have had a similar experience to you, in that I that I had a hearing problem, tinitus, and was diagnosed with acoustic neuroma fairly quickly. Mine was 21mm at my first scan. It was quite a shock as, "I don't get sick"

It was decided, for me that I should have radiotherepy/ gamma knife , about a year ago, which so far has been ok. At the time I didn't want to know.

Really it's not too bad.. I have lost most of the hearing in my left ear, but overall I feel that I'm lucky for 'early' diagnosis as I could have radiotherepy rather than surgery.

A lot depends on the position of your AN and what symptoms you are experiencing, but I would say that modern medicine/treatments are superb.

Try not to worry.

I am going for my check up next week.

Good luck to you.

[Pinklady111 in reply to Soxyboy]

Hope all is well with your check up. I have been given just the option of surgery as tumor is too large for radiotherapy. Hopefully it will all go well, thank you

[SJa2020]

All the v best. Be positive & take care we are all praying for you. We can all do this!

Did you get a date for your procedure? All the best once again

[ism20]

Sending you lots of strength and well wishes - you will be absolutely fine, I am sure. Whatever treatment option you choose, see it as marking the beginning of the next (and better) chapter of your life - AN free (yay!).

All the best x