Suspected Acoustic Neuroma

[Lana95]

Hello, I’ve been referred to see a specialist with suspected Acoustic Neuroma. I was curious as to how long everyone waited to be seen for initial appointment for scans etc?

[Bullpenn]

Hello Lana, mine was diagnosed in A&E due to a really bad migraine and I received a CT scan and was confirmed 3 days later with an MRI.

I know everything is a bit slower now but it should be as soon as you get an MRI.

Ring the administrator number on your letter and ask for advice from them as each hospital trust is different.

If there isn’t a number ring the number for outpatients and then ask for the neurological teams secretary number.

[Bullpenn in reply to Bullpenn]

Fingers crossed it’s not for you xxxx

[Lana95 in reply to Bullpenn]

Hello,

Thank you. I got a letter through to say they’ve received my referral and told to wait and they’ll call me for an appointment but it did seem pretty vague. Waiting is really hard for me to do as I’m sure with everyone. It was all super daunting as it started with tinnitus, dizziness, headaches, and had progressively gotten worse over the past year I’d say. So I was thinking bug in my ear or built up wax and was so shocked to hear potentially AN. I’m 24 and just didn’t expect that all. I’ve found it super helpful listening to all your stories so thank you.

[Bullpenn in reply to Lana95]

It is so hard waiting, Strangely when I was a little younger than you I thought I had a bug in my ear for a year and my friends thought I was crazy 😝

You might not have it and could be something else. If it is I always look at it that we have the Ferrari of tumours and it is benign so not as sinister as it could be. Plus your young so can bounce back super quick. I’m 33 so not old but I know it is rarer with our age group. Xxxx take care we are all here xxx

[Lana95 in reply to Bullpenn]

Hi Bullpenn, I’m trying to stay positive and hope for the best, hopefully I’ll find out soon. Thank you, it’s really helped finding this group and I wish you all the best xxx

[Kristyll in reply to Bullpenn]

Hi it varies with every authority and with this pandemic makes things even slower. I reckon if it was confirmed, and dangerously large you would be rushed through. Good luck x

[Lana95 in reply to Kristyll]

Thank you

[Smiffy65]

Hi Lana. As per previous reply mine was diagnosed as soon as I had an MRI scan (contacted the day after the scan). My specialist appointments and scan appointments are separate though so not sure if your specialist appointment will then require another appointment for an MRI or if they do both the same day. Worth asking when you get your appointment through. Also it was my GP who arranged my MRI ahead of my specialist appointment so again may be worth a chat with your GP. Good luck

[Lana95 in reply to Smiffy65]

Hi smiffy65,

I called just now and they said that it’s an urgent appointment with the consultant so should hear hopefully soon. There probably working whose going to see me and when. Thank you

[Tabbycat]

Hi Lana

I had a right side acoustic neuroma diagnosed in 2014. I had been ill with a cold virus and both ears had been feeling blocked up. After two courses of anti-biotics to clear up what my GP thought was an ear infection, my left ear was clear but the right one still felt blocked-up.

I was referred to ENT at my local Hospital in the September and they sent me for an MRI scan to 'rule out anything sinister'.

The consultant there gave me the result in November - I had a tumour growing on the right side and he thought it was an acoustic neuroma. He referred me to the nearest skull base team which for me is in Leeds. I eventually had a letter and I had to wait until the end of January for an appointment. To me that seemed an awful long time to wait - my head was full of questions, no-one I knew had ever heard of it - we had a very subdued Christmas.

At that time I found the entry under Acoustic Neuromas on the NHS website really helpful. I also found BANA - the British Acoustic Neuroma Association - website and meetings a great support.

Hope all goes well with you,

Tabby

[Lana95 in reply to Tabbycat]

Hi Tabbycat,

Thanks for reply. That must of been hard waiting. I’m in the same boat of the doctor thought I had an infection and no antibiotics worked and when he said potentially AN I had no clue what is was so was pretty daunting. I hope to hear soon. Wishing you the best.

[keithzx12r]

T

[keithzx12r]

Things were very different when I was diagnosed in 1987.. I was 50 and the GP's response to my hearing loss was "Its your age Keith" I was not happy with that so managed to get a private appt with an A and E consutant. He sent me for a scan and bingo an AN!!! When I went back to the gp he was quite appologetic!!

[Lana95 in reply to keithzx12r]

Hi! That’s the tricky thing isn’t it because the symptoms are so variable. I was originally told it was possibly just fluid stuck in my ENT region which was giving me tinnitus but got worse and grateful my recent gp was being cautious and sending my for tests cause of the symptoms matching AN.

[rogthepoge]

Hi Lana - this is a scary thing when you are awaiting diagnosis. However, people have varying symptoms, some less serious than others and there are different treatments available. I am one of the more fortunate cases. I went deaf in my left ear 4 years ago and had a 17mm growth. I was told that it was a benign tumour and possibly stable, but it would be measured again after 6 months. The main problem I had was dizziness and loss of balance when getting out of bed/chair or turning sharply. Since then I have been monitored regularly and there has been no growth and I am now on a 2 year recall. I am still deaf but my balance has totally recovered and when I asked about this I was told that the brain is capable of re-adjusting. I appreciate that not everyone is as fortunate as me. I wish you well and hope that you soon get the attention you need.

[Lana95 in reply to rogthepoge]

Thank you for message! My understanding is that as things are slowly opening back to normal that they’ve had to re prioritise appointments. That’s very true I’m beginning to lose hearing in my left ear and my overall symptoms have progressed over approx 9 months. So here’s hoping it’s soon.

[SJa2020]

Hi Lana hope things are well with you. Did you get any initial scan through ? And how long did it take for appt. date?

I’ve had an ear thing that in last few days has deteriorated rapidly . I went to A&E hoping that scans maybe possible. Dr said AN & sent me home with v v strong steroids! Normally this use would be clinically supervised & other checks done to see your body ok to have it. Told to wait for their letter/ call re scan appt in 8-10days. If not to come back to them.

Worried if this is the rapid growth one then will affect brain stem etc.

Any comments on how to speed it?