awaiting diagnosis from MRI suspected AN - Acoustic Neuroma ...

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awaiting diagnosis from MRI suspected AN

meggiemog
meggiemog

I will find out tomorrow if I have AN - had MRI done just over 2 weeks ago - no contrast - had no follow up appointment booked - but that has come through fairly fast. I did call ENT department just on the 2 week point expecting them to say it would be a couple of weeks - and they told me appointment had been sent out already - and it was the 'first appointment' they could give me - I'm actually going to another place for these results - so I am a little wary.

I have been losing hearing for a couple of years now - finding it harder and harder to hear in noisy places - and balance issues, incredible fatigue and occasional dizzy spells which make me sit still and stare at a wall to calm down. Christmas brought a constant white noise like tinnitus in 1 ear that I could not get rid off - I thought I had wax build up - tried otex - no good - saw nurse practitioner at GP's who did simple hearing test - and referred me to ENT. A week later I went for a hearing test at Specsavers as I saw the ENT waiting time was quite long (and I wanted to make sure this was not my imagination) The test lasted over an hour - was very thorough and the audiologist told me I had a problem that she could not help me with - said I needed ENT to look into as I had lost a large range of hearing in my right ear (ski slope audiogram) - my left one was fine. Fast forward to now - AN was mentioned at hospital consult - hearing test result similar to one from Specsavers- again I saw a nurse practitioner. She did a few more balance tests said I would have an MRI with contrast - but when it came to my MRI - they had put me into a 'mobile' MRI - where they 'don't do contrast'.

I am now just a few hours away from finding out what is going on. In a way I will be relieved if it does reveal an AN - but I also know they are as rare as a hen's tooth! Just wondering how other people found out - and how long after their MRI scan.

Sorry for the long post!!!

23 Replies
oldestnewest

I had my MRI on the Sunday morning and was phoned at home on the Monday with an appointment for the very next morning. I’m sure that you will be fine if you hadn’t heard within a day or so.

As the saying goes no news is good news

Best of luck to you

meggiemog
meggiemog
in reply to LisaBod

Thanks for the reply Lisabod - you are more than likely right and it will be nothing. Only a couple of hours now. I do find it strange that they are making me go to a totally different site for the results though! I could have gone from work if it was where I had the MRI done and initial consult (and no - this isn't a specialist centre either) - I've had to take the day off! At least the sun is shining and I can enjoy the afternoon!

LisaBod
LisaBod
in reply to meggiemog

I wish you the best of luck with your appointment, and whatever the outcome, there are others in the same boat , who are here to support you. My fingers are crossed for you. Enjoy the sunshine.

meggiemog
meggiemog
in reply to LisaBod

Yes I was all clear. Have no idea why I was sent 25 miles out of my way to essentially have the same appointment I had had 7 weeks before! Bizarre!!!! He hadn't even looked at MRI til I was sat there- didn't even know I had the MRI or hearing test - and he was the consultant. Next stop neurology

Hi mine took about 6 months . My A/N is 20mm . Im on watch and wait. But will have g/k at some point. Let me know how u get on. Gd luck.

Hello, I also had loss of hearing and after my MRI the call was the following morning and appointment given the same day... so you shouldn't be too worried .

All clear no AN. But being reffered to neurology as I have bad balance issues as well as one sided hearing loss. Hearing aid for my bad ear! Good luck guys!

Sorry to read about your troubles but glad to hear that you’ve not got an AN 😀

Good luck with the rest of your investigations, hope you find the cause and can easily treat it.

Just a passing thought but have you tried the Eply manoeuvre?

All the best!

Tried a few things! I am looking down other avenues now - I have one ear age appropriate (50) and one that's where I should be at 80!!! It's been subtle decline but with a constant hiss tinnitus now I have a fairly useless ear! Beginning to think shoving an ear plug in there might help! I am glad I do not have an AN but do wonder what has happened!

Good luck, hope all is well as I presume you know the result now. I had a 23.5 mm AN and had it treated by Gamma Knife. That was in 2014 and I have been fine. I have lost most of the useful hearing on one side and have had to work on my balance. As I say good luck and I would love to know how you go on.

meggiemog
meggiemog
in reply to dogandcat

Thanks dogandcat every one here has been lovely. I don't have an AN and I don't have any answers! Hopeful neurology will get to the bottom of it! Nothing I can do except try a hearing aid which I am waiting for.

dogandcat
dogandcat
in reply to meggiemog

Good luck, I hope you soon find out what is wrong and get it sorted. Take care and let us know how you are going on

Let us know the outcome. Gd luck.

Thanks Jerrycat. It was clear being referred to neurology now. So the quest goes on!

If there is any dispute they will re scan you with contrast. Good luck x

meggiemog
meggiemog
in reply to Kristyll

I might look at getting a second opinion - but for now I have a couple more tests I am going to take before I go down that route. I have seen that small AN can be missed on non contract MRI - but I will see neurology and have thyroid checked too before I go down that route. I can access private healthcare if I have to.

Hi I too was suffering with your symptoms I went for me I scan and was recalled so they could re scan using contrast...then was told I had a AN .I was then referred 40 miles away to Newcastle I saw consultant and was told that they may be able to use gamma knife which ment no surgery but in the end they couldn't because of size 28mm and I would need surgery. Which had to be done because of where the AN was ..so surgery it was I was petrified they didn't remove the whole thing they debulked it it now is bout 10mm in size .I lost my hearing in right ear also had some facial issues it's 3 years now since opp and I'm just learning to live with it..hope yours goes ok

meggiemog
meggiemog
in reply to 6625

Thanks 6625. I think I've been too fixated on the symptoms of AN as I was told I was showing a few of the red flags. Hats off to all of you who have truly had this diagnosis - I have not. I just have to wait (again) to see what is going on. It's definitely auditory nerve damage and only in 1 ear. It's so frustrating- I've been in the system since the end of January and I still have no clue!

It was Oct 2015 when I saw consultant op was June 2016 was bit of a worry playing the waiting game ...keep you chin up

Kind of identical process to me....good luck

meggiemog
meggiemog
in reply to Klatu

Hi Klatu

I was told mine was not an AN - I am still waiting to see a neurologist. My unilateral hearing loss has got worse as has my balance. In the end I have had to go private as I would have had to wait at least another 3 months to see anyone in NHS and that's with an urgent referral! Hope my appointment on Monday sheds some light. I hope you have an MRI with contrast.

Klatu
Klatu
in reply to meggiemog

Please research contrast gadolinium is poison ...not to scare you but its not a good idea ....hope this helps too 😊

meggiemog
meggiemog
in reply to Klatu

Perhaps - but think this way - what if an acoustic neuroma is missed because of no contrast ? It could potentially grow and cause so much more trouble - to be honest you could be poisoned by a cup of coffee or a peanut if your body doesn't like it. Its weighing up pros and cons.

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