Husband diagnosed on monday - Acoustic Neuroma ...

Acoustic Neuroma Support

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Husband diagnosed on monday

Koala01 profile image

Hi. I’m new. My husband was diagnosed with a 2.4 x1.8cm AN on Monday. Any advice for me to help him de stress would be appreciated.

20 Replies

Sorry to hear that it's really hard to give any advice as we all have different way to cope, me I had a 20second cry then snapped out of it has I started to joke about it just so it helped my partner and parents, when I got my results of my scan back in 2009 I had my partner and dad with me during my little cry I saw my dad who was white, shaking and in disbelief then saw my partner in bit crying sobbing shaking, it was then I cracked a joke and have done ever since as a way to cope.As u can c in my profile pic it was huge had two choices op or dead in six months so I was really lucky after op then radiotherapy I ended up with all the side effects possible and had depression and anxiety for quite awhile, sorry it's not really helpful but hopefully give u a little insight to what I went through but all cases are not the same.

He can try meditating which is what am doing now there are vidz on YouTube, Spotify have some wellbeing pods on there as well hopefully these help him, any other questions just ask...

in reply to Ga131078

Had mine 40 years..not Dead yet...yes its hard!

Ga131078 profile image
Ga131078 in reply to

Think it effects us all differently in my case had no choice it was op or dead within 6months, I was told we have a hole like at top of the Brain 🧠 for it to breath my was practically gone my specialist told me.

Two pieces of advice. (1) don't panic - Easier said than done, but once the initial panic is over, you and he will realise that this is not likely to be life threatening in any way and in some cases may not even need treatment. (2) Make sure you and he get all the information you can. A problem can be finding sensible unbiased information on treatment options. In most cases people are told that the best treatment for them is whatever the first specialist does! This may not be the case, so investigate ALL options and insist on seeing both a surgeon and a radio-surgeon so you know about both of them. And there are variations on each treatment you might need to know about Here is my story from over 20 years ago. Things have moved on now but the basic principles are still the same anarchive.org/chris.htm

Stucoo profile image
Stucoo in reply to bypass

Hi bypass. I have read your story many times, but often wonder how you are now 20 years later!

bypass profile image
bypass in reply to Stucoo

Pretty fit for 73 years old thanks! Even fit enough to speak at an event (socially distance naturally!) on Monday at which Princess Anne should have been the guest of honour. Sadly and for obvious reasons she had to cancel at the last minute. Still here's a picture to prove that there is "life 23 years after acoustic neuroma treatment by FSR"!

Chris reading at the dedication of the new Long Ashton War Memorial April 2021
Stucoo profile image
Stucoo in reply to bypass

Glad to hear you doing well! Can I ask how your hearing/balance is after the 23 years?

bypass profile image
bypass in reply to Stucoo

My balance remains pretty well perfect in most situations having recovered to normal within about 6 months of treatment. My hearing on the AN side remained at pre-treatment levels for over 10 years but then worsened. I think that was simply from normal age related hearing loss on top of the original AN loss. All in all I am very happy with my AN situation.

🤗

Stucoo profile image
Stucoo in reply to bypass

Thanks bypass. Really good to read that you're doing well.

Jcandoit profile image
Jcandoit in reply to bypass

I was diagnosed in 2019 with a 3mm AN, advice anyone ?

PLTM profile image
PLTM in reply to bypass

Thanks for sharing, well done you 😁

in reply to Stucoo

Ask me had mine 40 Years am now 74..

Stucoo profile image
Stucoo in reply to

That's interesting, how are you 34 years after radiosurgery?

Try not to stress it accelerates symptoms and worry. We are all here to tell the tale and it will not be as bad as we anticipated. Start asking the Neuro surgeons and the ones who do the STRS and be thinking about your treatment options. Good luckx

It's a very difficult time as the future can feel so uncertain, Rest assured your husband will be in good hands with regular scans. If he does need treatment, take time to consider what is the best option and make an informed choice.

I know exactly how your husband feels, as I felt the same 6 months ago when I was diagnosed. But after tons of research you start to realise that the condition is benign and not going to kill you. The treatments available will sort the problem out. Bypass has given you excellent advise. I got a second opinion which made me feel a whole lot better, and then I got a third opinion which confirmed the second and made me feel even better. Try to be positive, it’s not easy at times, especially in the early days of diagnosis, but over time you will start to realise that it’s not the end of the world.

Thank you everyone. We will know the plan of action on Monday. The MDT are meeting then and we are calling after 4pm. Once we get that I think we will both be a bit calmer x

in reply to Koala01

Wot put me off the op was watching a TV program, a merchant banker had private op..it went terribly wrong, they cut the wrong nerve and he ended up a cabbage in a hammock being fed by tubes..that made me decide wait and see that was 40 yrs ago, its not easy, wife has to put up with me as it can be very stressful..presently going thru another phase now of sudden hissing noise..there are many phases of the AN as they will all tell you. Often u can get an infection on the ear drum and blame it on the AN..so keep ur ears clean at all times.

Hi sorry to hear that your husband got diagnosed with AN. I got diagnosed back in November it was such a shock as I did’t really have any symptoms apart from numbness in my face on the right side and three months before I got diagnosed I felt that hearing on that side has reduced.

The doctors told me that the only way to get rid of it is the surgery, I was really hoping that a gamma knife treatment will be suitable . As it not invasive and if it work the timer shrinks.

I decided to get a second opinion and they confirmed that the surgery the only way.

So I had my surgery on the 31st of March And feeling great , I have no problem with my balance and my face hasn’t been affected.

So my word of advice get a second opinion, do your research on gamma knife treatment as with your husband’s size of the tumour it could be suitable depends if the tumour pushes on other vital parts of the brain. Even if he has to have an operation most people recover well and go back to their normal life style. Good luck. Take care and I’m sure everything will be fine . Xxx

Hi there, so sorry you are going through this. It's no fun. I was diagnosed in 2019 and had Cyber knife radiotherapy last month. Doing ok so far🙂. I think the start of the journey can be the worst bit as there are so many unknowns and symptoms twist and change. It's hard for partners, my husband gets very stressed so I tend to hide most things from him. I would urge your husband to start using the BRIAN app to record how he feels, it's a great tool. Also have a look at BANA . This is the British Acoustic Neuroma Assoc. They are brilliant and have lots of info as do the Brain Tumour Charity. Treat his AN like a new hobby by that I mean learn as much as you can about the condition and treatment options. If you become a BANA member you can join the support groups. There's one on 30th April by Zoom. They are really useful. It's so good to speak to others in the same boat and partners can join too. I'll be there on 30th under my real name Ann and I'd be happy to chat to you guys. Whatever you decide, stay positive. I walk 8km a day and run twice a week so you can live well with these blighters. Take care, hope this helps a bit x

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