Looking for advice

[JDWYER1980]

My husband has recently been diagnosed with a small AN. He has taken this news very badly and is currently looking constantly at stories on line and worst case scenarios. He has mild tinnitus at the moment but no other symptoms.

We are yet to see a consultant. This is due at the end of the month.

I am writing on here to see if anyone has any words of advice/encouragement that I can pass on to him. It is difficult to find cases online where the AN has been small. Any experiences will be greatly appreciated.

[Michyford]

Hi, I was diagnosed in September 2015, mine measures 16mm, think this is medium size. I have joint BANA British acoustic neuroma association. You have to pay to join but it so worth it, there are some really information sheets and forums on there. Also a magazine that comes out about 4 times a year. They also have a Facebook page which people ask questions on. They also have support meetings in different areas. I am under Addenbrookes in Cambridge and went to a meet in November is was really good.

I am on watch and wait, they waiting to see if it continues to grow because a lot of them don't. If it does then they will look at the options for treatment. I have lost most of my hearing that side and have the tinnitus. We have to keep positive, they are benign so that positive.

But I would recommend joining BANA, they do a joint membership so you can both use it too.

[Peta2407 in reply to Michyford]

Hi ,l know how he feels l was diagnosed with AN 25mm very near the brain stem and it is a huge shock and also found myself researching on the internet l ended up having Cyberknife radiation 15 mths ago and at my last MRI it had decreased in size l think the tinnitus is the worst thing but have also lost hearing on the AN side we all have good and bad days but lots of support and understanding is really important good luck on the AN journey it helps to chat and ask questions on here take care x

[Kristyll]

waiting is one of the worst things but please be assured there are hundreds f us here who are either on watch and wait or have had the op and are here to tell the tale, I am sure things will turn out fine

[bypass]

Hi, I remember being scared witless 20 years ago when the consultant told me about my AN. However, there is no need to panic. You and your husband both need education and today it is readily available. Here are two links; one is to my story and the other is to a web-site with excellent patient-centric information on acoustic neuroma. read it all several times then come back with any questions! Good luck. Link 1 anarchive.org/chris.htm

Link 2 anworld.com/

[sclb]

Hmm... that's maybe a more tricky one than you think. I'm not sure if the good stories will be exactly what is helpful to your husband just at the moment. I suspect his need might be different, and there might be taboos to confront.

Often acoustic neuromata fail to grow, and some get smaller over time. If it's small, there is usually a strong case for "watch and wait", as it may not need treatment for a long time, and perhaps it never will. But reaching a peace with it is not easy, especially at first. (And when it is small or not doing anything much, I suspect people prefer not to think about it or post on-line and get back to getting on with the rest of life).

However, your husband's need might be different. Some people will need to address the worst possible scenario before they can allow themselves peace and hope. That might involve all sorts of frank discussions, drawing up a will (though I don't believe that an AN ever killed anyone) and sorting out power of attorney, finances and responsibilities.... maybe other things too.

And then after that there can be more realistic discussion, and hope... and peace... can creep back in... and one can start to entertain the thought that one MIGHT not experience the worst possible outcome... and then life goes on, and is often better for having confronted one's own mortality for the first time. There's nothing like that for learning to appreciate life, and health in the current moment!

Does that make sense?

[maggieL]

Hi, I can understand the feeling of shock and panic he is probably feeling. We have all been there. I can only echo the words of MIchyford, Join Bana, the facebook page is brilliant and other members stories make good reading and there is always someone you can call on for help and advice if you need it. My AN is a small one 12mm x 4mm in the ear canal and has been stable with no growth since I was diagnosed 2 years ago. I am on watch & wait with annual MRI scans and hearing tests. I think I have probably had it for many years as first noticed hearing loss about 16 years ago I have moderate hearing loss in both ears so, not just related to the AN, and wear hearing aids which help with both the hearing and the annoying tinnitus. I live a normal life and am 67 years old. Any treatment choices he has to make do not have to be made hurriedly as they are usually slow growing and many do not grow at all. The waiting is the worst part. Hope this helps.

[JDWYER1980 in reply to maggieL]

Hi, I have had my mri results after watch and wait for 12 months and the AN is still 9mm x 4mm in the ear canal. My consultant has now scheduled an mri for two years time. Many thanks for your support. Damian

[JDWYER1980]

Thanks all for your comments. We will definitely look at the BANA site. Hopefully once the next appointment date arrives he will know what direction he will be moving in. Will keep you posted.

[Anglina]

I I first realised I had hearing loss 40 yrs ago at a school hearing test, this was confirmed 24 years ago when I had a proper test at the local hospital.

MRI’s weren’t readily available then and the consultant said he would have to operate to find out what was wrong. I decided to leave it as at the time my left ear was compensating. 6 months ago I decided to try and get hearing aids as I felt my hearing had gotten worse, (actually thought my left ear was failing). And was diagnosed with the AN. Researching this, I felt after 40 years, matched with the sever migraines I suffer with I believed I was going to be told I had a big neuroma….. Imaging my surprise and delight to find it was only 13mm long.

You never can tell with these tumours, whether they will shrink, stop growing or grow. I do know, treatment is much better than it was all those y ears ago and the outcomes so much better.