Newbie !

[ChristianGuitarist]

Hi

So yesterday I’d never even heard of Acoustic Neuroma Now I know I have the condition and also that there is this support group for which I’m very thankful. I had an MRI about 6 weeks ago following a bad ear infection in January that left me slightly deaf. Yesterday I saw the head consultant at my local hospital and he explained that my tumour was 5mm dia which I understand is small. He explained a lot about the condition and what the possibilites are, I’l have another scan in 6 months to see if it’s changed

I was so taken aback that of course I didn’t ask half the questions I should have (note to self, take someone with you next time ) so I’ve decided to be proactive and that’s how I found this group. Questions I now have are,

how long might I have had this, I’m 65 and otherwise healthy.

Could it be related to the bad case of shingles I had in my head last Sept and still have some recurring issues including sight problem?

Could the ear infection have started it?

Might I have had this for years and never known?

He was very reassuring and although I was supprised I’m quite peaceful about it all

Should I write back to my consultant and ask these questions (not sure if I’m allowed to have follow ups on NHS) ?

If anyone has direct knowledge or experience of these scenarios I’d be grateful to hear your thoughts. Thanks everyone, whoever you are !

[Karbob]

HiFrom what most people say it is common to wake up not being able to hear well,, for some they wake up hearing nothing.

I like may others have poor hearing and constant tinnitus.

I have never thought about how long I have had the Neuro ma for, but thinking back it could be 10years before I got a diagnosis.

I have found that if you join BANA (British Acoustic Neurons Association), someone will know the answer. Also if you have a consultant you should have a specialist nurse,you could email them questions.

I hope you keep well and take care. Karen

[ChristianGuitarist in reply to Karbob]

thanks Karen. That’s really helpful. I’ll look into BANA and specialist nurse thought.

My hearing loss is minimal atm and tinnitus is almost non existent so praying it stays that way!

Thanks for taking the time to reply

Dave

[whitefishbay]

Snap. I was diagnosed two years ago. Mine is 5mm and I am on watch and wait. They don't think it has grown. I get MRIs every year at least. I am a bit deaf now (60% deaf in AN ear) so I wear NHS hearing aids. They help but are far from perfect. I work in two secondary schools and I am always saying 'I'm deaf - what?".

I really appreciate books and subtitles!

Have a look at the Acoustic Neuroma Association website. It is in the USA and even if you are not a member you can go and listen/watch videos in their library. Really useful with lots of good info. I find in the UK the NHS gives you scant info but in the USA there is lots more info given to patients. Just the system. anausa.org/

Good luck.

[ChristianGuitarist in reply to whitefishbay]

thanks for taking the time to reply, really appreciate the advice and reassurance 🙂

[flappers]

HI Christian, As Karen says, if you have a specialist nurse they will be able to answer your questions, and British Association of Acoustic Neuroma (BANA) are a helpful little charity for those of is with an AN (or sometimes called a Vestibular Schwannoma (same thing, but renamed after it was discovered AN's arise from Schwann cells which wrap around and support nerve fibres. There is no known cause to how these cells start behaving differently, nothing you did or had has caused it, they are almost always extremely slow growing, 40% do not grow more after discovery and most don't need treatment at all., even up to to a couple of cms unless they are causing terrible problems with balance etc. Most they will not even consider any treatment until over 15mm, but it is all about the impact the squatter is having. In most cases they are best left alone. It is possible you have had this for many many years. They are benign and will not kill you. They will monitor you firstly over 6 months to see if it is growing, then yearly and maybe even every two years if no growth seen, moving to 5 yearly. Ask as many questions as you need to, there is also great support group on facebook called british acoustic support group where you can ever question you can imagine and someone will help! It a loely group, one you didn't want to be part of, but I promise it really is totally livible with., The shock is the worst and make sure you talk to people and look after yourself whilst you get your head around it all. x Lin

[ChristianGuitarist in reply to flappers]

thanks Lin. Lots af reassurance coming from everyone. Dave

[flappers in reply to ChristianGuitarist]

Glad to see this. As someone who did need treatment on a 25mm AN, I can say that was totally manageable too! Lin

[ChristianGuitarist in reply to flappers]

thanks Lin. Very reassuring 🙂

[Bad1]

Hi, I too was diagnosed following an ear infection and unilateral hearing loss. I did ask the question to the consultant “ are the two things related?” and was advised no they are not in fact other than NF2. Which is rare and responsible for a small amount of AN cases, there appears to be no known cause at this time although prior head MRI scan has been looked at in the research that I have read

Growth is individual but usually slow which is why it is monitored initially and treatment very much depends on age, growth , position , size preservation of hearing .reading up on international case studies and treatment plans can be useful

It’s a lot to process and the emotional/ psychological aspect will impact one way or another - in my case this and fatigue is the main issue as adapting to any symptoms has been straightforward. I remain eternally grateful that I have an AN - a benign condition

[ChristianGuitarist in reply to Bad1]

thats very helpful. Thank you

[DDwyer1]

Hi, I was diagnosed over 6 years ago with an acoustic neuroma. It was 9mm when discovered and hasn't grown in the first 5 years. I am awaiting on results on the 6 year mri. I have been on watch and wait for this time with no treatment. I have high sensory hear loss on the AN side and tinnitus. I tend to forget about it between scans but think more during the annual MRI. Mine was probably there for a number of years before diagnosis. Hope this helps.

[ChristianGuitarist in reply to DDwyer1]

thank you, very helpful

[Whitneyhouston]

you can email your consultant direct as I did the same had questions I didn’t ask at the time. It has taken 2weeks for consultant to reply but his secretary did respond immediately to say she had received it and would pass it on this was all on nhs.