Acoustic Neuroma?

Hello, I'm new here . . .

Just been referred to neurology by my GP, but appointment doesn't come through until March - so therefore driving myself mad on google in the meantime!

GP didn't mention any possible conditions to me, so have been trying to do my own research (not always the most sensible thing to do I know!) - my question is whether, from your own experiences before you were diagnosed, do my symptoms sound like possible acoustic neuroma to you, or something else?

My main symptoms are head pain (excruciating when bending over, coughing, straining, turning over in bed etc.) and tinnitus, both on left side only. Also have some cognitive issues - short term memory, and frequently substituting the wrong word in a sentence. No problems with balance etc., although I do tilt my head to compensate for the pain when bending over etc. (which was what first prompted me to seek help, as I realised it had become habitual, if that makes sense . . .) I have an overwhelming feeling that I can feel 'something there' slightly above/behind my left ear (inside my head, obviously), but I realise this makes me sound bonkers, so didn't mention this to the GP! Some visual disturbances too, and occasional 'twitches', but this may just be coincidental.

Would really appreciate any thoughts anyone has - it was the unilateral tinnitus which led me to think it could possibly be acoustic neuroma, but I was curious as to whether the other symptoms might support that, or point towards a different diagnosis entirely?

Thank you for taking the time to read this post :)

13 Replies

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  • Hi You're symtoms seem very different to mine l was diagnosed with an acoustic nuroma 18 mths ago and l had balance issues,tinnitus in one ear,hearing loss and a feeling of my ear being blocked but we are all different it's horrible having to wait mine was eventually diagnosed after an MRI .

  • Thank you for replying - I hope you're well, and receiving the treatment you need now.

  • Hi Abrahamh,

    From my experience I would say that your condition is not an acoustic neuroma. I had no pain, coughing, straining, etc. My symptoms (and that of others that I have read about) were: over a number of years increasing deafness in one ear accompanied by the realization that I was no longer walking quite straight (balance). I was told by experts (??) that it was most likely the onset of old age.

    My tongue began to feel numb on one side and I investigated on the Internet and found that the symptoms fitted an acoustic neuroma. I insisted on a scan which proved it.

    Therefore I would not agree that looking on the Internet for help is a bad thing.

    Good luck,

    Freddd

  • Try not to te a lot of notice at this time of the internet, until diagnosed. I however had facial twitches and bad balance probs, plus a blocked feeling in my ear. Take care and hope all goes well. It your GP thinks it needed he can expedite your apptd.

  • Hi abrahamh,

    From my reading and experience, it would seem unusual for an acoustic neuroma to present with a headache of this type, and an acoustic neuroma would not directly cause cognitive changes. Is your tinnitus continuous or pulsatile?

    I also think that your GP would have referred you to ENT rather than neurology if an AN was suspected.

    My own one presented with long-standing left ear deafness, tinnitus and a deep heavy numb feeling in that ear. I decided to swallow my pride and admit that maybe I needed a hearing aid, as I was having difficulties hearing what my children were saying. Over the few months prior to diagnosis, I had noticed a tendency to bump into door posts (and was even worse than usual at cycling in a straight line), twitching of the muscles around that eye, tingling at the top of my head, and an odd effect from my soft palate when I tried to blow my nose. And...very peculiar...tingling in my opposite buttock! (that would seem to be related to where my tumour presses on the medial lemniscus in my pons, but I don't mention it much, as that is more neuranatomy detail than most remember, and certainly not in the textbooks as a symptom of AN!)

    A lot of that isn't conventional wisdom about AN'S, but does fit.

    My visual symptoms are migraine, and I don't think that's generally considered to be linked to AN, though it would be nice to tie everything in together.

    I hope things go well. Try not to drive yourself too mad before your appointment (I think most of us have done that before you!!!) It might be better to talk to your GP again, rather than spend too much time on the internet. A lot of the stuff on the internet can be very unhelpful indeed.

    Let us know how you get on?

  • Thank you - you are so right about the internet! My tinnitus is continuous, but only in my left ear - fortunately, it is not too troubling in itself (once I know there is nothing too much wrong with me, I'm pretty sure I'll be able to live with it quite easily). I think my hearing might be slightly impaired, but I haven't had a hearing test. It's interesting what you say about the tingling as, before I had any other symptoms, I started getting what I can only describe as a shivering kind of sensation inside my head (but, again, only on the left side). Sometimes I still get this, especially when the pain is bad and radiating. But it could just be migraine and, like you say, it's easy to find links when you are looking for them . . . I hope you are well now, and you got the treatment you needed for your AN?

  • Apart from deafness on my left side I had no other symptoms so my GP sent me away saying "It's just your age Keith". I wasn't happy with that so went private (BUPA) and when I was operated on found three neuromas. 29 years have passed. Post op symptoms were quite severe but gradually over the years have subsided. Balance still not too good and thumping in my right ear especially at night in bed - But I'm still here aged 80. Best of luck with your diagnosis. K

  • Crikey - three! Glad to hear it worked out ok for you in the end though, and thank you for taking the time to reply :)

  • i don't recognise some of your symptoms being typical of an a.n. but I'm not an expert. Without the essential MRI scan your doctors won't guess at what's wrong and neither should you and nor should we. I feel for you having to wait but March isn't too far away and I hope you get a diagnosis you can live with.

  • Mine was diognosed around two years ago, it is 13mm and they are very slow growing and sometimes just stop growing altogether, I have tinnitus and deafness in left ear but no other symptoms until few weeks ago when I suffered balance problems, I was given another scan on Saturday and am waiting for results. I would not scan google for information it will not help, and you must try not to be concerned, just go for your appointment and I'm sure it will be fine.

  • Thank you - I hope things are going ok for you following your scan?

  • Yes, all fine, its stopped growing for the time being, scans every two years now, just left with the tinnitus and the deafness, but you learn to live with that, thanks for asking.

  • Thank you so much to all who took the time to respond to my query last month. From what everyone has said, it does seem unlikely I have an AN. I went for my neurology appt. this week, and now have an MRI scheduled for next week. The only condition the neurologist mentioned that it could be (apart from saying it could just be an evolution of existing migraine type symptoms) was chiari malformation. However, I have noticed that he has requested 'mri internal auditory meatus both' as well as 'mri head' on my appt. letter for next week - so I'm assuming this is to also rule out AN? Hopefully soon I will know for sure what is causing my symptoms. Logically, the most likely thing is that it's all just migraine related - as some of my symptoms match chiari, and some match AN, but I don't seem to have an exact fit for either. I am obvs. hoping it is just some kind of migraine, but I will update again when I know for sure - just in case anyone else is ever searching on here with similar symptoms to mine in the future. Wishing you all the very best of luck with your future health, and thank you again for sharing your expertise with me.

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