How were you diagnosed?: Hi, brand new... - Acoustic Neuroma ...

Acoustic Neuroma Support

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How were you diagnosed?

Palimpsest
Palimpsest

Hi, brand new to this site. Been suffering with dizziness and vertigo for a while on and off now. This got worse over Christmas, where I’ve now developed intermittent tinnitus (pulsatile and, erm, ‘regular!’), headaches and deafness. More worryingly, left side of face under eye been numb and tingly. Been so hard to talk to a doctor. First one I spoke to back in August suggested ‘hypochondria’ but one I spoke to last week suggested AN, Ménière’s disease or something similar. She referred me to audiology department at hospital and for MRI but I can’t be seen for at least 6 weeks. Last week though, my mum was diagnosed with terminal cancer and the stress and upset of that may well have exacerbated symptoms and I want a diagnosis a lot quicker so I can be helpful to my family. Add Covid to the mix and I can safely say this is the most stressful time of my life so far. I’ve booked a private MRI for next week but they rang me today asking if it was ears or head I wanted to be imaged (‘both,’ was my initial answer) I’ll ask my doctor tomorrow but I was wondering how any of you were diagnosed-I’m guessing it was through MRI-and if it was your head or ears they were looking at. I was also wondering what happened after your diagnosis.

I’m beyond worried about this. Surgery terrifies me and I don’t really want to lose my hearing. Feel in limbo really. Any words of advice (or comfort) gratefully received

10 Replies

Hi. I have just had my MRI last week. The scanned both my ears and head. I am awaiting results...its hard as the stress makes it worse and easier said than done but try to relax it helps. I've downloaded some relaxing music so I can get to sleep. That is helping.. with everything thing going on around us at the moment it's hard to relax. Hope this helps.

Hi. What a really stressful worrying time for you. I'll try answer your questions. Yes, diagnosed through MRI, on 26.09.20 after being referred by GP due to sudden onset of persistent and very loud one sided tinnitus. Within days has an MRI scan which showed a clear Acoustic Neuroma.( Was called to advise two days after scan. Within a week had a further MRI with contrast dye as this soaks into the tumor so can see measurements ( mine is 15mm) . Had audiology apt which showed some hearing loss, fitted for a hearing aid and tinnitus masker. Had two consultations with team at Guys hospital and am on watch and wait, rescan in about February/March to see if it's grown much. If it has they have suggested radiotherapy. The NHS has been amazing and there is support out there. I have apt at end of this month with the specialist nurse to talk through scan and treatment options/questions. I feel truely looked after. I hope you will get some answers. Good luck.

Hi Had my MRI yesterday. Was diagnosed in July 2019, am on watch and wait and this was my yearly scan. Scan both ears on my letter it said ‘auditory meatus both’ not sure if that helps.

Welcome Palimpsest

To answer your question - six years ago I was working as a teacher and as we came to the end of the year I caught the 'lurgy' that was doing the rounds - all the staff were going down with it. Both my ears and nose were blocked, running a slight temperature, really sore throat etc.

I kept going 'til the end of term and then went to see my GP. She gave me a course of anti-biotics as she suspected a throat infection and I felt much better, but my ears were still blocked. The doctor gave me a second course of anti-biotics, but only the left ear cleared. She prescribed a nasal spray and as we were flying to Mallorca (remember those days) she thought the change of air pressure during the flight might do the trick.

When I got back from holiday my right ear was still blocked, so my GP referred me to the ENT department at my local hospital. At the beginning of September 2014 I was given a thorough examination by the consultant (including a nasal endoscopy) and he sent me for an MRI head scan just to rule anything sinister out. I had that at the same hospital (without contrast) and it showed I had a tumour growing in the right side of my head in the internal auditory canal, which was pressing on my auditory nerve. The consultant referred me to the skull base team at Leeds and they confirmed I had an acoustic neuroma.

I was also given an appointment at the Audiology Clinic and now I wear a hearing aid. The consultants at Leeds put me on watch and wait for four years, but as the tumour grew year on year I chose to have Gamma Knife Surgery in 2018. I have had two MRIs since then, which both showed the tumour has stopped growing.

Hope you get a diagnosis soon.

Tabby

Hi I had gamma in 2007 several slight balance probsOver the last 14 years constant tinnitus

THIS episode started 2018 with sharp pain to scull opposite side to AN

Tinnitus doubling in volume / no sleep / face drop in shower due to facel nerve problem

You must persist with your doctor I've had doctors look at me with / and just pass me up the food chain

I'm now waiting for a phone call from radiotherapy

for an appointment to see if I can have gamma again

As AN is apparently 1mm from brain stem

Hi Palimpsest so sorry to hear you're having such a tough time. I had dizziness, headaches, loss of hearing and Tinnitus like marching soldiers in my head which then changed to beeps and tinkling glasses. After many Dr visits I was offered an MRI for 'Head' and for 'Internal Auditory Meatus' with contrast dye. This is the golden test and will clearly show if you have an AN. The symptoms could be other things though so try not to panic. If it is an AN it's not the end of the world just something you have to learn to manage. I was diagnosed with an AN in March 2019 but the tumour hasn't behaved as they expected and I have an appointment next week (brought forward) to start my radiotherapy journey. I appreciate how hard it is for you but in time you can accept and learn techniques to improve your quality of life. The Brain Tumour Charity and BANA (British Acoustic Neuroma Assoc) both have some fantastic info and people to support you. The BTC BRIAN app is very very useful. Depending on the size of your AN if you have one, treatment varies and surgery is the very last thing suggested. Many people are just monitored. After your MRI you should get referred to a Balance and/or Hearing Clinic and they are absolute life savers but there are some good Tinnitus and Balance websites in the meantime that teach you to cope. Also try 'Mindfulness' and remembering the positives in life. Try to find one thing each day to make you smile. You're not alone. This network shows you that so hang in there and stay strong. Hope this helps. Let me know how you get on with everything. Good Luck.👍

Head1050
Head1050 in reply to PLTM

Don't panic it's unusual for the an to grow again I've been told . I did get good relief for some years as for the tinnitus it comes and goes read Bad 1 below seams to have a better handle on it

Hi, it’s easy to understand your anxiety, especially with all the other stress in your life right now, however the problem with AN is that the symptoms are often vague, so they can go undiagnosed. Alternatively, many people worry a lot as they have all the symptoms but when they have the MRI ,it comes back negative. If you scroll through this site you will hear many people’s stories and their fears ,which come to nothing after mri is clear. The only way you can know for sure is with the MRI scan, and worrying about this will not change that result, but I can re assure you that an AN is benign and slow growing and very many people with this condition do not have surgery. So please try to relax, distraction helps!

Bless you, sorry you are having such a difficult time. My neuroma was found through MRI. There are other treatments if you have an AN and the big hospitals are used to them as a matter of routine. There is nothing worse than not knowing and information is power. Keep strong and find a more sympathetic GP. Xx

When I had my MRI I think the Prof requested "sub fossa" spelling may be wrong.Good luck & hope all goes well.

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