Waiting for MRI -possible acoustic neuroma - advice please!
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Hi- I'll be quick with this. I have lost hearing on one side, have tinnitus, unsteady sometimes too, woolly head often. Had ears tested etc at ENT - they have referred me for a non-urgent MRI brain scan - and told me If it is a acoustic neuroma it grows really slowly and not to panic. I should get an appointment by 6 weeks from initial hearing test. How can I not worry???? How long has anyone else had to wait?
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beehoyal Glennie68
Posted
They ordered mine for the next day. That was March 2nd of 2018. I had same symptoms plus acute vertigo for the first few days. If it was me, I would get it changed to urgent. This is what was explained to me: it's already caused damage to the 8th cranial nerve. If it grows and damages the 7th cranial nerve that could cause facial palsy and hurt the ability for facial control. I was not as worried about the "saggy face" thing as I was about the prospects of trying to sleep with my eyes open the rest of my life. So, after it showed the size of the AN, etc. - I made an appointment to consult with a neurosurgeon ASAP. And then a different one not long after, for a second opinion. Also went to an ENT/audiologist to have a hearing test and see if there was any chance to salvage the hearing on my left side which was totally gone. That was around April or May. Late June, I had Gamma Knife radiation at a top hospital to kill the tumor. Late December follow-up MRI showed zero growth and now I am in the phase it should start shrinking and going away. I will send your inbox some links that will be of interest. By the way, I'm starting to feel lots better. Hope you will get medical care as good as what I got. I also hope you have medical insurance!
Glennie68 beehoyal
Posted
It's waiting for NHS appointment in UK - so you are only classed as urgent with severe symptoms or cancer. A friend of mine suggested I should go to A&E and say I have a blinding headache - but I can't do that - there are people in much greater need than me. My hearing loss has been fairly gradual - I didn't really notice it until around Christmas - but I have been feeling very fatigued for over a year - and all other tests didn't come up with anything. The tinnitus I have in my right ear is constant now - but not so bad as it's like a fizzing noise like you get between radio stations on am radio. I just want to know what I am dealing with and having an idea of the waiting time would be good! The hearing in that ear is also distorted - I know - I am quite musical and the tone difference between my 2 ears is quite freaky!
Glennie68 beehoyal
Posted
Hi Beehoyal,
Just an update - and saying thanks for replying when I was so anxious! I have an MRI follow up on Tuesday - so hopefully I will find out what is going on! We have a different system in UK to US - so lucky I don't have to rely on insurance (I'd be totally broke by now if I did - 2 fairly major ops in 5 years). Apparently there are only 6 UK NHS hospitals that have a gamma knife - not sure where the nearest one would be - but then again I actually don't know if I have an AN or not yet! All will be revealed very soon!
Glad that things are improving for you!