Acoustic Neuroma: I have tinitus in... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Acoustic Neuroma

lut123 profile image

I have tinitus in both ears have had it for over 2 years following a viral infection where I had fluid behind the left ear was referred to the hospital but because of covid has taken 2 years for appointment

I have no hearing loss it was checked at hospital and no other symptoms except the tinitus Dr has said tinitus can be caused by a Acoustic Neuroma so I needed to have a MRI scan I am having this on Thursday I am really worried as just recovering from a eye operation

The hospital has confirmed they give every one with tinitus a MRI and it's just a tick box exercise but it has freaked me out any help much appreciated

29 Replies

It sounds very unlikely to be an AN, sounds like they are just being prudent. It’s always hard not to worry when going through investigations but it does just sound routine so try and be reassured by what they’ve said and keep busy if you can.

lut123 profile image
lut123 in reply to Avhorton1

Thank you for taking the time to come back to me The consultant didn't give me much info at all just to say she was not worried

unfortunately I have had the eye op which has gone well and a car accident plus this in the space of 6 weeks

Iam goingfor a open scan as I would not be able to cope with the normal MRI which has meant its sooner than the 3 month wait for the normal one it's just freaked me out iam sorry to say so thank you for the positive reply the hospital did also say it's to cover them

Avhorton1 profile image
Avhorton1 in reply to lut123

You poor thing. Sounds like you’ve had a really difficult time of things. You are probably feeling a bit vulnerable at the moment with the op and accident so it’s natural to feel worried. But what the consultants have said sounds reassuring and given that your symptoms started after a viral infection years ago I’d be very surprised if anything shows up. Just remember is 1/100,000 chance and the are lots more common less worrying causes of tinnitus. That’s great to hear you can get your mri sooner, just keep busy as best you can until then. Sending lots of good vibes your way !

lut123 profile image
lut123 in reply to Avhorton1

Thank you I will update when I get results thank you for the support

Hi, Try not to worry if it is something they do for tinnitus as routine

You have been through a lot lately and you will naturally be worried but doesn’t sound like you have had any of the symptoms of an AN

Your consultant doesn’t seem concerned so take that positivity

Take care and remember this support group is always here

Kim

lut123 profile image
lut123 in reply to Kobegeorge

Thank you for replying to me and your support the MRI is Thursday and should know by next monday My tinitus has got worse at minute due to the stress

My eye op was for a masetic hole so I have had gas in my eye which has meant I have been unable to do much but that is going now so at least I can do things which helps to take my mind off

So glad I found this group

thank you again

Sewtastic profile image
Sewtastic in reply to lut123

I’ve just replied to your post but then seen about your eye op. We’re in a similar pathway - I already had the tinnitus then developed three separate retinal tears in May this year three lots of surgery to seal them, my vision is now about 80% recovered. Agreed stress definitely increases the tinnitus.

lut123 profile image
lut123 in reply to Sewtastic

Thank you that is encouraging to know The eye surgery was well worth it had mine done 4 weeks ago

An MRI is routine to look for acoustic neuroma if you have one sided tinnitus. I have had constant right sided tinnitus every day for 15 months now like you following an infection. The infection has left me with hearing loss and subsequently the tinnitus am told. My scan was all normal try not to worry too much, easier said than done I know, really hope all is good.

Thank you for taking the time to respond to me I have no hearing loss just the tinitus so fingers crossedHope you are ok now

Try not to worry, as others have said you would have some hearing loss along with the tinnitus and both ears affected is more rare than one sided so hopefully it isn't AN. All the best for the future

lut123 profile image
lut123 in reply to Pinkrose1

To be honest that's what everyone has said that I would have had hearing loss as well which I dont haveI am so grateful for all the responses as I have been so depressed over this and my eye op i also have glaucoma which is ok and is treated by drops

Just be glad to get the results

I have acoustic neuroma in left ear tiny so annoying Dix said even if removed ringing might not stop. The best for me has been taking lamictal it definitely quiets the ear maybe by quieting the nerves? I did psychedelics one one of those spiritual retreats wish never had as never ever did drugs. Doc said it seemed to excite my brain and nerves in my ears. I would never have known but ringing got so bad I ended up going to ent and they found neuroma. Getting it removed is very risky so have to find ways to ignore it.

lut123 profile image
lut123 in reply to Kellyc

Did you have other systoms at all

Kellyc profile image
Kellyc in reply to lut123

No just very loud ringing in my left ear something got stirred up enough to send me to ent. Then mri found neuroma. The bad part if is it grows because then may need surgery. If doesn’t they leave it alone. Supposedly doesn’t damage hearing but taking it out could. I barely noticed until I did that experience and nerve got stirred up after that and Covid vaccine.

Ballantyne56 profile image
Ballantyne56 in reply to Kellyc

Hi Kelly my Neuroma is 12cm I have tinnitus is both ear and at the moment it is actually driving me crazy I feel suicidal with the noise especially when trying to sleep. I am just thinking after reading about your tinnitus I am now thinking that perhaps it might have been made worse with the vaccine I wonder if anyone else has noticed this.

Kellyc profile image
Kellyc in reply to Ballantyne56

Yes! I did notice that and go see a doctor for medication to help lamictal helping me. My doctor told me cbt therapy also. It sucks honestly but distract yourself. If vaccine did do it we cannot change that but it could get better. Surgery very risky but I may do it even though no Guarantees helps T at all. I think somehow our brains will adjust at some point. Mine has been few months I have to hope will get better!

Hi There - a lot has been said - but I would encourage you to have the normal MRI if you can. This may be more definitive that the 'open scan' which you mentioned - but I don;t know the facts on that scan. I say this after having at least 10 or more MRIs. You can request sedation if you need it - I just simply got used to it.

The thing to remember is, if you are at this stage, you are at the top level and getting good care. It's very good that you are not stuck at some GP practice with them guessing.

If I were you also, I would put the hearing loss out of mind for now. If in fact you have an AN, now called 'Vestibular Schwannomma' as well, there will be some loss. I've been dealing with this for several years-ish. I have slight tinnitus and yes, on/off hearing loss. The specialists will test your hearing more, and help you.

Also: I hear and understand your anxiety - who wouldn't be anxious? However, what I learned in my journey is just that: it will be a journey. First they will want to map out the rate of growth, and then plan how to proceed. Again, you will be at top level, and my experience is/was that these specialists are very interested in this rare condition.

Things ot consider being grateful for:

-AN's are BENIGN. repeat this to yourself regularly. I was humbled during my treatment with Cyber Knife to be in waiting areas with people dealing with hardcore cancers. I remain grateful for this.

-you have good care

-you can request second opinions

-you can use the fantastic telelphone lines here at the charity who are saints walking among men and will stick with you all the way

Things to do:

-Make good notes or take a chaperon with you to appointments to do so.

As informed questions - one of which will absolutely be "what size is it" if you indeed have one.

-Request copies of ALL paperwork, lab reports, and scan results - keep a tidy file. If they will make you an actual copy of the scan on CD - get one.

Things to consider dropping, in my experience:

-Get initial information, then STOP GOOGLING. Until you have facts, from the tests in hand for your individual case - it's an exercise in needless worry.

Chill out. Let it happen. You are not alone.

Big hugs

Martin

lut123 profile image
lut123 in reply to Martin-mtig

I suffer badly with closdaphobia which is why I am having the open scan my hearing was checked at the hospital and it was fine I also had the ear pressure check which was again fine I had no tinitus until I had the viral infection over 2 years ago I was referred by my doctor then but due to covid i have only just seen the consultant who said she was not worried, it has been confirmed by the hospital that this is routine for any one with tinitus and is to cover them so it is a wait and see thank you

A lot of people get T so don't worry. I have it in one ear only one crackling all day gets loader up and down all day .

lut123 profile image
lut123 in reply to Highwycombe

thank you for that

Good luck for your scan on Thursday. You have been through a lot and are probably worried sick about this but honestly the best way is to remain calm and positive. Like Martin-mtig said its benign and that is a huge blessing. My tinnitus sometimes drives me nuts and other times I don't notice it but there is a lot of information out there to help you deal with it. My husband swears by breathing exercises to calm the mind perhaps that may help. Take care xx

lut123 profile image
lut123 in reply to Debra1963

Thank you for your kind words you are right I am worried sick and it's getting worse the nearer it gets to the scan

Hi had my scan done at the European Scanning centre lovely staff so kind a I was a mess when I got in thereResults will be 2 to 3 days so just need to wait for that

Avhorton1 profile image
Avhorton1 in reply to lut123

Any news on your results???

lut123 profile image
lut123 in reply to Avhorton1

The results got to the hospital to day and the consultant was going to look at them I asked if the consultant could ring me to let me know but nothing yet Stress levels are well up !!!

Hope you are ok

lut123 profile image
lut123 in reply to lut123

Just had phone call from hospital scan was all normal thank you for all your support

Avhorton1 profile image
Avhorton1 in reply to lut123

Great news!! Very pleased for you 😀

lut123 profile image
lut123 in reply to Avhorton1

Thank you and my best wishes to you xxx

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