Acoustic Neuroma Hearing Loss

Pkiernan wrote: »

Hi all,

I've had an MRI after reporting timnitis and moderate to sever hearing loss in one ear only.

The MRI didnt show anything such as a neuroma and came back clear.

How were your neuromas diagnosed?
Did they show up on an MRI?

I'm concerned it may have been missed.

Id be surprised it some like an AN would be missed on an MRI. did you consultant offer any other cause of your symptoms

So if the review of the results was no AN then I think you should be confident that didn’t miss anything AN related. Now the question is why you have those symptoms

Hello all. I found this forum a couple of weeks ago and have been reading through it on and off. Firstly I'd like to thank everyone who has chosen to share their stories relating to acoustic neuroma. I was diagnosed with an 8mm intercanalicular AN in October 2020, so it's small and entirely within the ear canal at present but still very worrying. It's been great to read about other people's experience of this condition in Ireland specifically, as most of the forums are inevitably from the US where things are somewhat different! Obviously it sucks to have one of these and I wish none of us did but it's good to feel that you're not on your own. I find that one of the hardest things about it and the sort of self pitying 'why me?' mindset that can take hold.

So briefly, as I said I was diagnosed with AN after having an MRI in October last year. I got tinnitus in my right ear for the first time in my life about a year previous to this. That night was very strange as I had pain on that side of the head and extending into the neck all night and barely slept. Fortunately that had never happened again since! Ever since I've had a feeling of fullness in the ear. My GP was only willing to put me on the waiting list for ENT which was 3/4 years! I went for a hearing test in March 2020 which showed perfect hearing so I kind of stopped worrying about it. Everyone seemed to think it was something sinus related. I persisted with the doctor and my last option was to pay for an MRI myself, which I did, bringing me to where I am now. I have another scan booked at Beaumont for April, then a consultation with neurosurgeons etc in May. It's obviously a worrying time as I've no idea what the follow up scan will reveal or what course of action will be recommended, or even what I want to happen to be honest. I was a real mess on getting the diagnosis, the symptoms suddenly felt very sinister as they reminded me of the cause. My GP prescribed betahistine, otherwise known as Serc, to help with the symptoms. Does anyone else have any experience of this? I got worried at one stage that it might cause the tumour to grow faster as it turns out the medication works by increasing blood flow to the inner ear and is meant for people with Meniere's disease.

Anyway symptoms are feeling of fullness in the ear, mild tinnitus when it's very quiet (have to have background noise to sleep), slight balance issues (feeling a bit unsteady sometimes), vision is a bit wobbly sometimes not like my eyesight has gotten worse but things just not as solid as they used to be if that makes any sense. I'm also a bit shaky which may not be related. They actually had to redo some of my MRI as they said I was shaking which I had no idea I was. Now I notice that I have tremors in my hands but that might be a manifestation of anxiety. I suppose you start thinking all sorts like what if it's nf2 (I'm 37 so that's unlikely I believe) or it's been mis-diagnosed and is something even worse.

I'd be interested to hear if any of these symptoms are in line with what others have experienced and what those who have already been through the mill think might be coming next for me.

All the best

Michael

Hi all

I had an MRI, first one in two years and my tumour is recurring. He never fully took it all out to save some functions on my facial nerve. I’ve to go for cyberknife. Any information or things to be aware of would be great

Thanks