acoustic neuroma ? : Hi . I am having... - Anxiety Support

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acoustic neuroma ?

lynstone60 profile image
32 Replies

Hi .

I am having tinnitus in one ear only and my doc has referred me for a MRI scan to rule out acoustic neuroma. As you can probably understand my HA has now gone through the roof ,i cant eat i cant sleep and i am scared to death of having the MRI ,i have a wait of around 6 weeks before i even get the scan so i really do not know how i am going to cope with this anxiety . Has anyone on here had a MRI to rule out acoustic neuroma ? if so can you tell me what to expect? will i need that dye they put in you ? will it be a scan of my brain ? I should of asked all these questions but my appointment was over the telephone due to the current situation . i am a 61 year old female and scared out of my wits here .Thank you for reading .x

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lynstone60
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32 Replies
Natsteveo profile image
Natsteveo

hi there sweetie

It really frustrates me that drs say these things I know what you are going to go through until your mri appointment. The fear and anxiety we go through until we get our mri and results is pure torture...i know they have to say worst case scenario but only worry us if we have to be worried i find this totally cruel for us who suffer with HA.

I've had the same for 4 weeks I have a small sore on my head ive had it 2 years and my dr told me it could be early stages of basal cell carcinoma which is a type of skin cancer...but like you I haven't eaten hardly slept i cant function just torture myself... my sore has almost gone and is healing 😌 I'm back Friday half a stone lighter and a nervous wreck my husband is coming with me to speak to the dr about this because like he said why would you put someone through that for weeks without any evidence 🤔

I lnow its not easy but say to yourself "

I've had no tests yet so I will deal with it when the time comes ..im positive if he thoight this was anything serious he would of had you in the same day..but it doesn't stop our fears does it...maybe you should ring your drs and explain to them the mental emotion its putting you through

Nat xx

lynstone60 profile image
lynstone60 in reply toNatsteveo

Hi NAT .thank you for your reply ..I am speaking with the doctor today hopefully .I am going to ask if I can be seen earlier than 6 weeks .I don't think I can take 6 weeks of waiting my anxiety is sky high x

Miniwheats profile image
Miniwheats in reply toNatsteveo

Nat.. I've had basal cell carcinoma 5 times it is absolutely nothing to worry about! They remove it or you can treat it with a cream. It is not the type of skin cancer that kills nor does it convert into the kind that kills (didn't your doc explain this?) Ask to use Aldara or Zyclara cream and you won't even have a scar left behind!

Natsteveo profile image
Natsteveo in reply toMiniwheats

Hi sweetie thanks so much for this. no!!! Dr never explained anything just let me be frightened out my worst for 4 weeks this has reassured me though thanks for this miniwheats

Nat xx

Miniwheats profile image
Miniwheats in reply toNatsteveo

You are welcome. Another thing to point out (because I know how anxiety works and you may still worry despite my reassurances) is that your sore is already two years old. If it were melanoma or squamous cell (the dangerous ones) you wouldn't have survived two years!

Hope you sleep like a rock tonight! 🙂

Natsteveo profile image
Natsteveo in reply toMiniwheats

thanks so much for this ❤

I slept better last night bedt nights sleep ive had in ages thankyou

Nat xx

Xene profile image
Xene

Hi lynstone60

Just to try and help put your mind at ease a little, hundreds if not more have tinnitus and the majority of them do not have an acoustic neuroma. It is usually a formality to be sent for an MRI just to rule out any possible underlying causes. I would imagine they would scan all of your head depending on what the Dr. has requested, as for the contrast I'm not sure. As for the scan itself, they can be very noisy but it shouldn't take long approx 15-20 mins. You may find more helpful info on the BTA forum on HU. I know it's hard not to worry even though it doesn't help, especially as you've got six weeks to wait.

Best Wishes

Xene

Walt46 profile image
Walt46

Hi,

Sorry you are going through this.

I lost 40% hearing in my right ear and and have raging tinnitus. I had 2 MRI’s in the space of 4 weeks ( head only) which will be the same for you. Will take about 20 mins. Just lie there and a machine will scan your head. there is a little window where you can see the nurses and You will also have a button to press if you want a quick exit but there will be no need! Really, the only thing to be concerned with It makes some loud noises that just sound like operating machinery, even with the noise reducing headphones they give you. And, because you are having a scan for something that is of significance, it obviously makes the noises, the look of the scanner look more sinister when all it doing is scanning you. - You relate all the noises and visuals to the acoustic neuroma. Maybe look at some videos on YouTube of people having an MRI scan so you know what to expect. I just closed my eyes and thought about happy things, counted to 500 in my head, just anything other than what I was there for.

I was 100% certain I had acoustic neuroma and though they didn’t say, I could see they were concerned it was that too and gave me an MRI same day. Both scan have come back clear, doesn’t solve my problem but I’m ok on that front at least.

Try not to worry (easy to say) and keep busy or your mind will always show you worse case scenario! The amount of scans they do for acoustic neuroma for it to come back as nothing is very common.

Good luck!

Andy

lynstone60 profile image
lynstone60 in reply toWalt46

Thank you all for your kind words of comfort ,i am going to ask if i can be seen sooner than 6 weeks because of HA .they probably wont see me sooner but its worth the ask if they do .

So when you say a head scan only ,this is the brain right ? why does it have to be the brain if the neuroma is on the ear ? .One thing i am praying for is that this tinnitus stops because the doc did say if it settles within the 6 weeks of waiting then i can cancel the scan as i wont need it ,but i am so focused on this dam noise in my ear right now that i cant seem to do anything else or think of anything else but an acoustic neuroma ...does anyone know if i will have the contrast dye to have the head scan ?

best wishes x

Walt46 profile image
Walt46 in reply tolynstone60

I had 2 scans and no due required either time. I’ve had an MRI on my body too and due was required but it had no effect on me whatsoever and if it did I doubt it would be anything to worry about to much.

acoustic neuroma Is a non-cancerous tumour on the brain, so it will be a brain scan. Don’t let the scan concern you that it’s on the brain, it makes no difference whether it was your ears or brain being scanned in terms of what happens when having an MRI. I also had the inner ear scanned second time around, it was no difference from the first scan.

The outcome is likely to be you just have tinnitus through ageing. It could last weeks, months, and forever but as annoying as it is, it’s not dangerous. I’ve had dining in right side of head now for 6 months 24/7 and white noise doesn’t even drown it out for me. Maybe have a look at Tinitus forums on here in the meantime as you can probably relate to a lot more of the stories. Are you having major balance issues?

lynstone60 profile image
lynstone60 in reply toWalt46

Hi .no balance issues but a little kind of vertigo .it's not a room spinning type it's like when I turn my head to the side and bring it back again it's like my eyes take a second to catch back up ..really weird

Walt46 profile image
Walt46 in reply tolynstone60

That’s what I have, it takes my brain a couple of second to compute sound and what I’m seeing, like there is a lag in my brain receiving information. Not fun at all but nothing showing in scans.

lynstone60 profile image
lynstone60 in reply toWalt46

Do you get this often ? I have a couple of episodes a month .been on and off since 2015

Walt46 profile image
Walt46 in reply tolynstone60

I had it so bad for a month I ended up in hospital for a week, I thought I was losing my mind. It’s eased off and I get it now and then and even more so when I’m tired.

lynstone60 profile image
lynstone60 in reply toWalt46

Yes me 2 .when I'm tired iv noticed it happens ..have you ever woken in the morning with it ? I have that's when the doc says it's most likely BPPV but I don't get any spinning ..mine can last a few min or a few hours scares the crap out of me .now this ringing I'm so tired of all this .

Walt46 profile image
Walt46 in reply tolynstone60

I am struggling and sleeping is very difficult. I’m trying to keep busy and active to drown at the noises. Therapy is the rout I’m going to take, I didn’t believe in it too much out I’ve heard many good things. I’m only 40 so to think I’m stuck with this for ever gets me down.

lynstone60 profile image
lynstone60 in reply toWalt46

So have you been diagnosed with anything ? .my husband says I should have the scan to put my mind at rest but I'm seriously thinking I can not go through with it the worry of the results will be a knightmare ..do you get results straight away .I hope you don't mind me asking you all these questions .thank you so much for trying to help me

Walt46 profile image
Walt46 in reply tolynstone60

I have been diagnosed with nothing which in one hand is good, and the other a nightmare. I was in the same position as you and was panicking despite everyone telling me what I’m telling you. Initially, they said they found something on my brain and my heart sunk and was so worried. They sent it to a consultant who came back and said it was fine and it was not significant enough to cause the symptoms I’m having. I have to question that still because of how I’m feeling, but to have another can and tell me that’s ok and I’m signed off from them does give me some assurance.

You won’t get results straight away, your doctor or the hospital will write to you which will be a few days, or sooner if urgent. your husband is right, you should have a scan to put your mind at rest or in your mind will become a bigger problem than the issue itself! Don’t spend too much time googling it. You have tinnitus, it’s super common and so are the funny heads that come with it. My bets are you won’t have an acoustic Neuroma - I’m not promising, but very unlikely. 1 in 100k develop it and usually before 60 too, plus if you did have one the treatment is very advanced. Put it this way, your not going to die!

Try and stay calm, stress will make the ringing worse and so will the lack of sleep. Eat healthy, do exercises and stay positive - it will help. Don’t be counting down the days to your scan, it’s not worth the hassle or worry. X

lynstone60 profile image
lynstone60 in reply toWalt46

Thank you for sharing and caring .I hope you get yourself sorted out aswell .I wish you all the best and I will let you know what happens .my husband says we should have it done privately .not sure of the cost tho .thank you once again x

Walt46 profile image
Walt46 in reply tolynstone60

Thank you. Scan will cost a few hundred and will have to wait a week or so for results overall. I really would just wait it out, unless money is no l next of course! Let me k ow how you get on!

MollyStark profile image
MollyStark

Hi, just to say the dye (iodine) is used with a CT scan so they won't need to inject that. x

lynstone60 profile image
lynstone60

hi .thank you for your reply x

Jeff1943 profile image
Jeff1943

I had this years ago, it's just a formality to rule out anything bad. The scanner only covers your head, I think they play music to relax you. I was so relaxed I fell asleep during the scan. You have nothing to worry about.

lynstone60 profile image
lynstone60 in reply toJeff1943

Hi .that's what worries me ,to rule out anything bad is so scary .I am convinced it will be bad

Jeff1943 profile image
Jeff1943 in reply tolynstone60

You're only convinced it will be bad because you have health anxiety. They are doing this test to confirm you don't have a tumour NOT to confirm that you do have one. Big difference. It will be fine.

Hallyhooyou profile image
Hallyhooyou

I went through this. I also had the test for minnear’s disease for my tinnitus. That was less fun. The doctors just like to rule everything out, especially with people who suffer HA. Tinnitusis is a difficult thing to live with, and stress and anxiety make it worse. My tinnitus was so bad at one point I would just cry, and I also saw 3 different ENT’s just looking for any kind of answer. Eventually I got used to having tinnitus and don’t notice the sound anymore. But weather changes and stress can cause it to rear it’s ugly head.

Acoustic neuromas are rare . The test will be a breeze. I’ve had the dye for tests in lots of other places in my body. It just feels a bit weird and lasts only long enough to do the test. It’s a warm sensation for a couple of minutes. Then it dissipates.

I strongly suggest reading about relaxation techniques and how to learn to live with tinnitus. Easier said than it sounds I know.

Best of luck with your test. I’m sure it will come up with nothing just like mine did.

lynstone60 profile image
lynstone60 in reply toHallyhooyou

hi .thank you for your reply . did you get diagnosed with anything ? somebody on here said they only use the dye on a CT scan and not MRI,did you have a brain scan ? x

Miniwheats profile image
Miniwheats in reply tolynstone60

Lyn, the way it's been explained to me is that dye is used in an MRI to provide more details on a tumor that has been found on an initial MRI for purposes of getting a clearer picture of what they will be dealing with once surgery has been decided on. They will not use dye for your MRI but to put your mind at ease you can always speak with the receptionist at the MRI clinic and ask. Remember that there are windows into diagnosing brain tumors that are done at bedside BEFORE they get you into the MRI .. the MRI is to confirm you DON'T have a tumor. Remember that docs must use whatever means necessary to avoid litigation. No doc will ever say "oh you have tinnitus and some infrequent dizziness? Ah... don't worry we won't do an MRI I think you're fine because these bedside tests show nothing significant". No. They will ALWAYS do a CT or MRI to cover their butts. This is standard procedure which is the waitlist for MRI is so darn long...

Hallyhooyou profile image
Hallyhooyou

I had a CT scan because my insurance wanted to go that route. They found nada.

Miniwheats profile image
Miniwheats

Hi. Yes I've had an MRI to rule out acoustic neuroma because of tinnitus and some weird and wonderful dizziness/vertigo. The ENT can do bedside neurological tests and be pretty confident whether or not you have it but they do the MRI because it's at their disposal. If I were you I'd ask to be put on the waitlist for cancellation or call up other MRI centers in smaller towns where they may not even be busy.

That's what I did and got in the next morning otherwise I would have had to wait 6 months for the original appointment 😳

Miniwheats profile image
Miniwheats in reply toMiniwheats

And no I didn't have it the MRI came back normal despite my crazy symptoms!

lynstone60 profile image
lynstone60 in reply toMiniwheats

That's great news and thank you for your reply .I will ask to go on call up list .

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