Update on MRI Scan: Hi to everyone who took the... - Tinnitus UK

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Update on MRI Scan

MOLKO1972 profile image
58 Replies

Hi to everyone who took the time to reply to my post regarding MRI Scans.

Well, I have had the scan and it wasn't bad at all. Literally took 10 minutes :). Boy it was loud though and I had ear plugs and headphones on. I dread to think what it would have been like if I hadn't had the ear plugs! My T was spiking before I went into the scan and it's not made it any louder, so the ear plugs and headphones worked.

Thanks to BTAPat for suggesting which ear plugs to get and also thanks to everyone who gave me great advice and a bit of peace of mind.

Still have the spike, which has been with me since just before Christmas. I am hoping it settles down soon...fingers crossed.

Just taking each day as it comes :)

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MOLKO1972 profile image
MOLKO1972
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58 Replies
rabbits65 profile image
rabbits65

Pleased you’ve got the scan over and done with , have you had the results yet ?

MOLKO1972 profile image
MOLKO1972 in reply torabbits65

Hi rabbits65,

Nope, not yet. They didn't say how long it would take, but just to expect to hear from my ENT Consultant.

Hopefully the results will come back as normal, which I'm sure they will. Then it's a case of carrying on and trying to cope with T the best I can. I have good days and bad days. Today is a bad day. T is just whistling like mad...it's tiring :(

rabbits65 profile image
rabbits65 in reply toMOLKO1972

Thanks for replying. Tinnitus is indeed very tiring and stressful if you allow it to be. I find dog walking helps as it’s more noticeable indoors . I don’t use ear plugs or hearing aids as my hearing is ok. However I do have some hyperacussis alongside the tinnitus . Anyway , look you are not alone with this . Let us know when your results come in , sadly ENT do little for tinnitus .

MOLKO1972 profile image
MOLKO1972 in reply torabbits65

ENT was useless! The Consultant didn't even ask me any questions. Didn't even ask how I was coping and if I was coping. Was a total waste of time, but he did send me for the scan, but I'm guessing that is just routine anyway. My doctor wasn't very helpful and I have been to 2 Audiologists. Both Audiologists said I had OK hearing 'for my age'. Yet when I went to see ENT and had a routine hearing test done there, they said I had slight hearing loss in my ear with the T.

I find walking the dog takes my mind off it. It's when I sit down at night to watch a bit of TV it's really noticeable. Watching TV isn't as enjoyable as it used to be. Normally my T is at a manageable level, but this spike is relentless at the moment :(

rabbits65 profile image
rabbits65 in reply toMOLKO1972

I agree with you , I found ENT to be so unhelpful and it is so unkind of them not to even give people some compassion .

Philip6 profile image
Philip6 in reply toMOLKO1972

Sadly ENT are as much use as a chocolate teapot. I think they know there’s nothing they can do, and are embarrassed about it and then, in my experience, end up being rude. The Drs also are unhelpful, I’ve found. I had an MRI over 10 years and they never even told me the results, months later I saw a hearing specialist and she mentioned the MRI was ok, but I never had a letter. My T has spiked since the new year, I did have a cold before Christmas which could have been Covid, I suppose, and I did have a booster jab two weeks before Christmas, so it could be that. I get the odd really good day, but mostly my T is much louder.

MOLKO1972 profile image
MOLKO1972 in reply toPhilip6

Hi Philip6,

I had my booster jab on 14th December and I think I noticed my T had spiked by 22nd December, so maybe this is the reason why I'm suffering now. I was hoping it wasn't anything to do with that, but I can't think of anything else. I too have the odd good day, but I'm the same as you and the T is much louder now.

Black-cat666 profile image
Black-cat666 in reply torabbits65

I have that aswell and also makes me fell very sick at night the last two weeks i havent slept at for months i put up with my tinnitus but it has got worse 🙃

Black-cat666 profile image
Black-cat666 in reply toBlack-cat666

The same.with me sickness got sick ess tablets no good so tired during the day and tinnitus louder and feel so sick at night and hate any noise which makes me.jumpy

doglover1973 profile image
doglover1973

Nice work MOLKO1972 Hope you get the all clear. I've yet to go for a scan as I dipped out earlier this month .. I didn't have the courage to go as my T was spiking. You're obvs braver than me. That's all we can do. Take each day as it comes - as you say 🙂

MOLKO1972 profile image
MOLKO1972 in reply todoglover1973

Hi doglover1973,

Ahhh thank you. I'm sure I will get the all clear. Make sure you go for the scan. I went with a spike and it's not made any difference to mine at all. Just make sure you wear good ear plugs and wear the headphones they should offer you.

Is your T still spiking now? Mine is just relentless at the moment :(

doglover1973 profile image
doglover1973 in reply toMOLKO1972

Yes I'll go. It's a must really - with single sided deafness . Sorry to hear your T is relentless at the moment. Can you identify any triggers? Mine's been spiking thru January with a brief respite in the middle . It's unpredictable isn't it .. You just think you've got on top of it and it spikes again .

MOLKO1972 profile image
MOLKO1972 in reply todoglover1973

The only thing I can think of is down to the booster jab, which I had just before Christmas. My T spiked around a week later. I just can't think of anything else that could have affected it.

surreycccfan profile image
surreycccfan

Glad you got through it ok :-D

Leehawkins3 profile image
Leehawkins3

Hi there, I too went for an MRI. Whilst I’m happy they didn’t find anything it does compound the fact I have tinnitus and I have to talk my brain into ignoring it, or to stop making it in the first place. I went to audiology too and I have some high frequency loss. I was told a hearing aid should even me out. I get vertigo too, so I’m left feeling quite wobbly, especially in groups. The problem is I don’t feel at all deaf, and nobody I know thinks I’m hard of hearing. Has anyone with some relatively minor hearing loss used an aid to treat T? I doubt I’d be self conscious about wearing it, but I don’t want to waste nhs money either.

I hope you all have a quiet day. I’ll be in my home office with 10 hours of YouTube tinnitus noises playing on my speaker 😀

Yogachamp profile image
Yogachamp

HiI had the scan and was pleased no tumor was found but they thought something showed up in my brain that was similar to people developing MS have but then said very unlikely it is MS so offered me a lumbar puncture which I’m quite reluctant to have as I have no other symptoms of MS . I just wanted to know if it was linked to this loud Tinnitus I have had for 9 months now but as usual he dismissed this like all doctors seem to as if it’s nothing & quickly changed the subject . So like you I just try to manage it best I can by keeping busy tiring myself out so I can sleep at nights , I have days when it’s quieter which are much easier then the days where I wake up to loud ringing in my head which stays all day .

I really wish we had the answer as to what causes it to fluctuate so much .

Good luck with your results

Laney

MOLKO1972 profile image
MOLKO1972 in reply toYogachamp

Hi Yogachamp,

Ahhh thank you. Hopefully the results will come back clear.

We've both had T for around about the same time. Mine started in May of last year and it was annoying to begin with, but then I was managing it quite well and didn't really bother me too much. It's this spike I've had since before Christmas and It's really starting to bother me now. It just seems relentless and so tiring :(

All we can do is manage it the best way we can. There is always someone out there who is worse off than yourself...that's what I keep telling myself anyway.

Take care of yourself :)

Parrcj profile image
Parrcj in reply toYogachamp

Hi Yogachamp your experience is similar to mine had MRI scan nothing found which is good !

After 2 years I finally see:

ENT who said let's see you in 6 months time see how you are . Slight hearing loss. Ask lots of questions relating how I am coping. Awaiting appointment.

Neurology, virtually insisted I take the drugs which I had reported to them I could not tolerate, it made my T worse. They said until you give these a go for 3 months are hands their are tied. I cried when she said this!!! Not often I am reduced to tears . Well I tried and after 1 month took myself off them T went through the wall . Have another appointment in June 2022

My experience with ENT and Neurology has been disappointinv but I was looking for a solution. They are such lovely people but have no idea how much this effects your life and how to treat . I was looking for a miracle cure.

Also I find its not worth discussing with anyone who has experienced T as they have no idea the trauma you go through.

I am listening to this as I type it calms my T down considerably.

lightningprocess.co.uk/help...

Regards

V

Yogachamp profile image
Yogachamp in reply toParrcj

Hi ParrcjThank you for your reply , yes I feel for you & like you say it’s so hard to make other people understand if they never had it . I feel sorry for my partner as before I had this I was so fun loving & happy & now I think I have turned into a quiet person and obviously not happy .

I live in hope that one day I will habituate & it will just not bother me anymore like some other people I know who this has happened too . Some days though it’s so hard especially when it’s loud

Thank you so much for this link I just listened to it & it really helped so guess I will be using this again .

Good luck on dealing with this & let’s pray we wake up one day & it’s gone or at least we don’t hear it anymore .

Laney

Parrcj profile image
Parrcj in reply toYogachamp

So agree with this

before I had this I was so fun loving & happy & now I think I have turned into a quiet person and obviously not happy

Had messages from friends saying I have turned into a recluse!! Maybe that's true cannot handle to much noise and achol anymore 👍

Yogachamp profile image
Yogachamp in reply toParrcj

Oh no how sad , let’s hope things improve How long have you had it ?

My noise is in more in my head than my ears & drives me mad sometimes .

Parrcj profile image
Parrcj in reply toYogachamp

In my head and ears cannot tell from day to day where it might be.

It my 3rd year and I can keep myself busy during the day and forget its there. I play golf which has been an enormous help during the day. But socialising in the evening in large bars or load music is not enjoyable.

I have to be positive and try and win this battle.

Today in my ears I am sure being out in the wind golfing makes it worse the next day? ⛳. It could be anything 🙃

Not many people say its in the head also, sorry to hear you are suffering.

Regards

V

Yogachamp profile image
Yogachamp in reply toParrcj

Yes we have try stay positive even though it’s hard at times A few people I know say it’s more in the head but sometimes feels like it goes all around my ears & head it’s like alarm bells ringing

I find when I’m out socialising I can forget about it but avoid noisy bars

Mine bothers me during the day more & at night I’m so tired I fall asleep .

Laney

Parrcj profile image
Parrcj in reply toYogachamp

Keep in touch we can swap notes , let off steam, or just be a listening ear 🤗

Yogachamp profile image
Yogachamp in reply toParrcj

Yes will do 😀Take care

Luxjim profile image
Luxjim

Pleased all went well.

Lulu_Lollipop profile image
Lulu_Lollipop

Pleased it all went well. Was it only 10 minutes? I was in for a lot longer. Something like 20 mins and then done again with something injected into me. Glad to say the scan didn't worry me at all, I almost dozed off. That scan was to investigate my tinnitus. ENT man spotted a large brain aneurysm and passed the scan on to a Neurosurgeon, but it got lost and it was only my chasing up that found out the bad news. It was a big old faff for me to get to the right neurovascular surgeon and eventually my aneurysm was clipped about 6 months later. I'm hugely grateful to the ENT man for having me scanned as I'd never have found out until it was too late. I still have the tinnitus, btw, it's just with me all the time. Not related to the brain aneurysm or the stroke (2 years after surgery). I hope you get good news when you get your results. Do please let us know xx

MOLKO1972 profile image
MOLKO1972 in reply toLulu_Lollipop

Hi Lulu_Lollipop,

Yes, was just 10 minutes long, which I was pleased about.

Sounds like you've had a bit of a journey. ENT did you a good service by the sounds of things, which is good :). I've not been impressed with ENT to be honest. I know there is no cure for T, but I wasn't offered any help in coping with it. I was literally told I needed a routine MRI Scan and if that comes back clear, then there's nothing more can be done. That is exactly what I was told. I'll wait for the results and then I'll have to see what my options are regarding self help.

How is your T? Are you able to manage it OK? xx

Lulu_Lollipop profile image
Lulu_Lollipop in reply toMOLKO1972

My tinnitus is always with me, sometimes louder than usual - stress etc - but it doesn't bother me in the way it did in the early days. I think my other issues overtook it on my worries list :D My sister has tinnitus too and she has some sort of hearing aid thing to try to block it out. My nephew has it too since he went sky-diving. One thing I know is that I never sit in silence. I always have music on. Also, when I clench my teeth the T quietens down. Dentist told me to stop doing that though :D xx

NaiveGreen profile image
NaiveGreen in reply toLulu_Lollipop

Can I ask you to try (but please be careful) tense your muscles around neck/head. I'm no doctor so I can't describe it better.

When I do this my head shakes (because of tension) but T changes tone noticeably. Clenching works for me as well but in lesser degree.

This one of mine (I can separate sometimes three different ones in me) is not pure tone (one sine pitch) but more like hissing - is this somewhat similar to yours ?

Sorry, maybe I'm being rude and too straightforward with those questions - but learning about world was always my biggest drive in life. As scary as it seems I'm curious about T. This is the only thing what I can be about it - curious haha :) - but make no mistake, i would probably trade a leg for silence.

Lulu_Lollipop profile image
Lulu_Lollipop in reply toNaiveGreen

Yes, mine's sort of hissing. Hard to describe. If I sit in a silent room it sounds as if I've left "something" on, something electrical.

That's really good you've had the scan and managed ok. Well done ❤️

MOLKO1972 profile image
MOLKO1972 in reply to

Ahhh thank you :)

Suz_2 profile image
Suz_2

I have severe reactive tinnitus which goes up with noise and i was only offered ear plugs and i didnt know then that there are special headphones for MRI. did they have already the special headphones at the MRI dept - or did u have to request those ?

MOLKO1972 profile image
MOLKO1972 in reply toSuz_2

Hi Suz26,

They were already there and I could have taken my own music for them to play for me if I wanted. I didn't as it only took 10 minutes.

How's your T at the moment? Mine is terrible and starting to get me down a bit :(

I used to have just a quiet hissing noise, which was manageable. It has now ramped up to a high pitched hissing and a lot louder. It gets so tiring :(

Suz_2 profile image
Suz_2

my T started last Aug out of the blue ( after a head bump) and has got louder over past 4 wks - it changes tone as well. Getting enough sleep is the biggest problem now as I have come off Zopiclone that i took for 2 months. I am not on any other meds but GP has suggested Mirtazapine (helps with anxiety and sleep) which can be taken for longer -not sure about meds though as they can make tinnitus worse in the long term but sometimes they are absol necessary. I would recommend to you the OTO App for yr phone - it is THE BEST app with CBT & Pyschological therapies specifically for tinnitus sufferers - there are a lot of modules which cover everything and u just work through these gradually . Does yr tinnitus go up with background noise?

MOLKO1972 profile image
MOLKO1972 in reply toSuz_2

My T does all kinds of different things. It can be loud and then go quiet and then go loud again. It can just be a hissing noise and then another high pitched noise adds on. It's relentless at the moment. It does go up with background noise, but I feel I need background noise to try and take my mind off it. I'm stuck in a bit of a rut with it all now. The louder it gets the more I focus on it and the more I focus on it the louder it gets...and so on :(

Suz_2 profile image
Suz_2

are u able to sleep reasonably well through yr tinnitus - do u find it difficult to drop off to sleep ? there are particular routines to wind down before bed that can be effective - these are on OTO app and online info as well - because lack of sleep and daytime tiredness can push up the T as well

MOLKO1972 profile image
MOLKO1972 in reply toSuz_2

Sleeping doesn't seem to be much of a problem. I'm finding that I must relax once in bed and my T quietens right down. I can wake up with hardly any noise at all, but as soon as I get going it starts up again :(

Suz_2 profile image
Suz_2 in reply toMOLKO1972

Thats good that you can sleep - I hope that you have more improvement soon with the T

Travelrid13 profile image
Travelrid13

So pleased the earplugs made a difference to your MRI scan I am due to have an MRI scan this next week so would be very interested to ask please which ear plugs you used.

MOLKO1972 profile image
MOLKO1972 in reply toTravelrid13

If you go on Puretone website and the ear plugs I got are the ER-20 Music Ear plugs. Item No ER20S :)

Good luck at your scan :)

Travelrid13 profile image
Travelrid13

Thank you for your help I will look those out on the web site. Much appreciated👍

Travelrid13 profile image
Travelrid13

I have just ordered them fingers crossed they arrive in time now. Thank you so much would not have known about these

MOLKO1972 profile image
MOLKO1972 in reply toTravelrid13

You're welcome. All the best :)

Travelrid13 profile image
Travelrid13

Thank you MRI is Monday evening I am very nervous 😔

MOLKO1972 profile image
MOLKO1972 in reply toTravelrid13

You'll be fine. I felt the same as you, but there really is nothing to be nervous about. Just make sure they offer you their headphones as well, as the machine is really loud!

oldskir profile image
oldskir

Hello MOLKO,

i'm glad the scan went well.

Please could you tell me which ear plugs you used? Thanks.

MOLKO1972 profile image
MOLKO1972 in reply tooldskir

Hi oldskir,

If you just scroll up you will see that I replied to Travelrid13 regarding ear plugs.

All the best :)

Travelrid13 profile image
Travelrid13

Hi my ear plugs arrived yesterday so in plenty of time for my MRI scan which is on Tuesday I was thinking it was Monday! Thank you so much for your understanding.

MOLKO1972 profile image
MOLKO1972 in reply toTravelrid13

Hi, you're welcome :). Please let me know how you get on tomorrow, although I'm sure you will be fine :).

Travelrid13 profile image
Travelrid13

Yes I will do thank you fingers crossed

Travelrid13 profile image
Travelrid13

Well I did it! I was lucky it was an open ended MRI scanner but I had to have my head raised a little or I go dizzy so my face was quite near the inside of tunnel.Its not helpful either is it to have to wear a face mask in there.Your advise was great thank you earplugs and headphones the answer as the sound would have been awful I guess.When do you get your results I? and how are you feeling.? expect I will be waiting for quite a bit now.x

MOLKO1972 profile image
MOLKO1972

Ahhh glad it all went well. I knew you'd be fine :) It's loud isn't it?...even with ear plugs and headphones. I'm not sure when I will get the results. They just said they should go to my ENT Consultant.

I've been having a rough time with my T at the moment. I've had a spike since before Christmas and it's just not calming down. I've even been having trouble sleeping some nights because it has been so loud. I'm normally OK at night as it tends to quieten down a little, but some nights it's been awful.

How are you getting on? x

Travelrid13 profile image
Travelrid13

Oh dear sorry to hear you are not having a good time .Yes definitely would have been too loud to bear. Perhaps chase your ENT consultant up speak with his Secretary maybe. I must be patient now for a little while but my dizziness not good.

Travelrid13 profile image
Travelrid13

Hi I havnt spoken for a while had my results of MRI I have 3 very badly worn discs in my neck and also 3 trapped nerves, I spoke to consultant for results but am due to see him later this month. Have you had your results yet?

MOLKO1972 profile image
MOLKO1972

Hi, you'll have to keep me informed as to what they plan on doing for you. Could the worn discs and trapped nerves be contributing to the T?I've not heard anything with regard to my results, but I'm guessing no news is good news!

Travelrid13 profile image
Travelrid13

Don't know about the T when I see consultant may know more ,,Yes do hope you find something soon but its true no news is certainly good news so fingers crossed for you. Keep in touch.

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