What acoustic neuroma? 5 years after.....

[anan88]

Hello-My diagnosis was 5 years ago now - a 3-cm. AN against my brain stem (and I wondered why I had been feeling so dizzy and sick....!). Had surgery 2 weeks later, Gamma knife 3 months later, another surgery 2 months later...... And I am doing so well now I forget about it most of the time. At the time it was such a huge blow and disrupted my life totally, but now, 5 years on, I feel fine, am still improving, and am so grateful for all the expertise, experience and care from the surgeons and staff who dealt with me. Funniest parts: got my 1st hearing aid 2 years after the ops., and veered into walls on my good side for a few weeks because I could now hear all the traffic coming up behind me and kept thinking I was going to get run over. Haven't been run over yet. Also, went to a really loud concert at Wembley Arena last week. OK, I wore ear plugs all the way through, but I did it! I was so proud of myself!

The fear goes, your AN will go, you get through it all and come out so much stronger. And the technology is improving the whole time, and with it, the recovery rates get better and better.

[Kristyll]

Its hard to say, I think there are only the doctors that can either re scan you or give you the reassurance you require. It may be just disturbance or even a virus like I had. take care and all the best x

[anan88 in reply to Kristyll]

The consultant initially thought it may be labyrinthitis, but MRS scans showed it to be an acoustic neuroma, which was why I underwent the surgeries and Gamma treatment. My post was intended to give reassurance to people diagnosed with AN, and who are at a vulnerable time of their lives, when perhaps the testimony of people who have lived through exactly the same thing might help them.

If you are lucky enough to have had "a virus", which has now cleared up, you are very fortunate.

[ellenkane in reply to anan88]

Can I ask, how long you had symptoms before they finally checked you for AN? I have suffered on and off for over 20 years with labrynthitis. However last October I was diagnosed with a cervical spine schwannoma which is a benign tumor growing round a nerve sheath. I had pain for over 3 years down my arm and had several dizzy episodes as well. However 6 months post surgery I am off work today as I went into meltdown yesterday at work with extreme dizziness. Because I've had a schwannoma I'm beginning to wonder if I could also have an AN? I get occasional piercing pain in left ear, it doesn't last long. Occasional high pitched noise. Slight tingling in left cheek. The dizziness and spaced out feeling has always been the worst thing. Symptoms are few and far between but still over 20 years worth.

[anan88 in reply to ellenkane]

Hello - I only noticed (or acknowledged!) the strong symptoms for several months before diagnosis, but had been feeling ill a lot longer, although still only maybe just over a year (although on hindsight I was probably just ignoring it for longer than a year). The dizziness (ie balance gone haywire) only got bad enough for me to actually fall over once perhaps 5-6 months before diagnosis. The vision problems, with ceiling beams swinging around when I looked to the right, and feeling sick from it, got worse in the last few months before diagnosis. I also got quite a shooting pain in my ear occasionally, like an extreme earache deep inside. I thought my tinnitus started only after surgery, but my husband says it started before diagnosis. Also, the back of my skulI behind my ear ached quite badly. I think by then I was feeling so tired, I can't remember clearly the progression of events. I know the twitching around my eye and lips was the last thing to start.

I think the only way to find out definitively is the MRI scan, which is arranged by the consultant after your GP has referred you (which you know all about having done it all for your spinal schwannoma). It's almost more worrying not knowing what's going on than just finding out, especially when it's literally all inside your head. I didn't do any research on whether an AN is more likely if you've already had one schwannoma, but you're clearly doing your research to have come up with the idea of an AN.

I'm afraid I can't be any more help, as everybody's so different, but if you have any more questions, feel free to ask. Don't go on worrying and fretting, ask your GP - it might be nothing except your old "friend" labyrinthitis getting more extreme.

[ellenkane in reply to anan88]

Thank you. I'll see my GP next week and I also see consultant who operated on me in June so will go armed with all my questions. Thanks again

[anan88 in reply to ellenkane]

Yes, have your list of questions with you and make sure you get answers! Good luck and best wishes.

[anan88 in reply to Kristyll]

Sorry Kristyll-my response to your post was because I had misunderstood. I, too, hope Margaret's symptoms may be something other than a neuroma, and no treatment will be necessary. Either way, the doctors will cope with it fine! And I hope your virus has cleared up.

[Cluster_Head]

I love your attitude. It has given me great comfort.

[KimmiP]

Thank you for your encouraging words. Much needed today. I am one year & 7 month’s post surgery. For a busy body like myself, the recovery was difficult, but I charged forward & got through it, like I do most things. The emotional part of it & the frustration of ‘being a bit different’ now was greater than expected. I wasn’t ready for that. But hearing your positive attitude 5 years out gives me hope that it will continue to get better. Thank you!

[anan88 in reply to KimmiP]

I know, the emotional part needs watching out for, doesn't it?! If occasionally you remember to be nice to yourself with little treats, even silly ones, and allow yourself to feel as if you're indulging what you want to do, not what "needs doing", I find it helps a lot. Otherwise you can start to blame yourself for not doing everything, when in reality you are still doing more than most people even attempt. Don't be hard on yourself! I even use it as an excuse sometimes for not doing something, or not seeing people I secretly don't really want to see. Is that horrible of me? Probably, but so what. We all need our little strategies!

[Hipporanabella in reply to anan88]

Your attitude is very inspiring

My sister has just been diagnosed with 1.8cm AN following an MRI sand she is being really pragmatic about it thankfully ( she is 45 ) so I have been doing some research and found this forum

I hope that you are continuing on your road to recovery with your positive energy

[anan88 in reply to Hipporanabella]

I'm getting better and better, thank you. Presumably you've found the Headway and BANA charities? I found Headway particularly inspiring as there are so many who've had very long paths back to "normal" following brain issues, it makes us ANs seem positively lucky. Please reassure your sister she'll be fine, and she's lucky you are doing research for her - well done! X

[Hipporanabella in reply to anan88]

No not found bana or headway yet but I will check them out.

I am so glad that you are still on your recovery journey and as you say.... there is always something or someone worse off...

As Jung said “ it’s how one looks at things rather that what they are in themselves” that is important and I can see from this forum how sharing positive stories and just getting on with the situation with stoicism and acceptance is so much better for the self than wallowing.... of course there must be many bleak days when the fearovercomes one ..... that’s completely normal... But then having family friends and these forums gives one someone to turn to for comfort and guidance. And as you say the alternative is death.... so live to fight another day....

Good luck with your continued journey of recovery.... and I am so glad that this forum seems to be helping so many people.