New and Anxious About Potential Acoustic Neuroma

[DSF767]

Hi all,

I'm sure you have read posts like this 1,000 times by now but at this point I'm very anxious that I have an Acoustic Neuroma.

For a couple years I've had single sided hearing loss with occasional Tinnitus no other symptoms of note except I do have very occasional vertigo that lasts seconds if I wake up and move quickly but other then that no balance issue or facial issues.

When I noticed the hearing loss I did see an ENT but i was younger then and when he told me I should get a hearing test I kinda blew it off. I know that was a mistake but at the time I was busy and well honestly not sure what I was thinking.

Fast forward until now and I finally made the decision to follow up on the situation even though in the 2 years since this all started I haven't got worse but I recently had my daughter so thought it was about time to start looking after myself for my family's sake. So I had my appointment with my ENT today and they confirmed I had mild to moderate hearing loss in my left ear.

The results of my hearing test on my left ear were SRT 40 Discrimination 76% 75dB MCL.

Basically my doctor said there was distortion in my left ear which he was concerned about so ordered an MRI in the research I've done I always knew an AN was possible but it was not until tonight when I was finished with my appointment that it really hit me. I have an MRI scheduled in a couple week and know I will be worried until then and have basically convinced myself that I already have an AN from endless searching about the topic.

I am the type of person to plan and look at everything so I know it's going to have me going crazy until I find out one way or another so I figured I'd join here share my story in case in the event I do have an AN I will be ready to hopefully be in a better place to deal with it.

 

[billie48]

Probably best to wait till the result of your MRI is out before you suffer too much anxiety for the possibility of AN. Even if you have it, it may not be malignant and there are treatments for it. So try to be positive so you don't suffer unnecessarily. If necessary, try to use some natural herbs such as lemon balm, valerian or chamomile to help calm the anxiety. One day at a time. Take care. God bless.

 

[dingaling]

Not much you can do until you get MRI results. AN's are extremely rare but are treatable these days.

 

[glynis]

Acoustc Neuroma are slow growing non cancerous tumours and just a yearly check up is needed to keep an eye on it and it does not mean that is the cause still.
They can be removed if needed so please don't worry yourself and let ENT look after you checking things out.
Relax and take care...
Love glynis

 

[Hazel]

Hi there, I'm in the same situation, except that my tinnitus only started 4 weeks ago. Hearing test confirmed one-sided hearing loss of about 20 dB across all frequencies. I'm having my MRI next week and getting the results the week after. I know the waiting can be excruciating, but nothing to be done about it except try to distract yourself.

From what I understand AN is very rare indeed, and the MRI is really only just in case. There are many other possible causes for one-sided hearing loss + T. I read somewhere that in most cases no explanation is ever found.

Sounds like our cases are very similar, so let's keep each other posted.

 

[DSF767]

Hi there, I'm in the same situation, except that my tinnitus only started 4 weeks ago. Hearing test confirmed one-sided hearing loss of about 20 dB across all frequencies. I'm having my MRI next week and getting the results the week after. I know the waiting can be excruciating, but nothing to be done about it except try to distract yourself.

From what I understand AN is very rare indeed, and the MRI is really only just in case. There are many other possible causes for one-sided hearing loss + T. I read somewhere that in most cases no explanation is ever found.

Sounds ;/llike our cases are very similar, so let's keep each other posted.

Thanks Haz I am hoping thats not what this is.

At this point I can live with my hearing in its current state. My tinnitus is very minor the hearing loss is worse but like you its about a 25 Db loss.

I am holding out hope that because this has been an issue with me for awhile and had always been kinda what it has been and not got any worse its one of those unexplained reasons why it happened which is funny to say but I can live with that its going to be hard to accept if it is an AN (which like I said I have convinced myself that's what it is)

 

[Hazel]

I feel the same way - at this point I'd rather have unexplained hearing loss than AN. But to stay positive, probably neither of us have AN. And even if we do, it's not all doom and gloom. I've read a few stories of people who've either recovered well from it or at least didn't get progressively worse. It's a very slow growing tumor, and sometimes just monitoring it over the years to make sure it stays small is enough. Anyway, let's not get ahead of ourselves...

I had my MRI this morning, will get the results next week Wednesday. Tip: An MRI is very noisy. They'll likely provide foam earbuds + a noise cancelling headphone (at least that's what happened for me), but you could also bring your own ear buds, i.e. better quality than the foam ones. As long as they don't contain metal - no metal objects allowed in an MRI machine.

 

[DSF767]

I feel the same way - at this point I'd rather have unexplained hearing loss than AN. But to stay positive, probably neither of us have AN. And even if we do, it's not all doom and gloom. I've read a few stories of people who've either recovered well from it or at least didn't get progressively worse. It's a very slow growing tumor, and sometimes just monitoring it over the years to make sure it stays small is enough. Anyway, let's not get ahead of ourselves...

I had my MRI this morning, will get the results next week Wednesday. Tip: An MRI is very noisy. They'll likely provide foam earbuds + a noise cancelling headphone (at least that's what happened for me), but you could also bring your own ear buds, i.e. better quality than the foam ones. As long as they don't contain metal - no metal objects allowed in an MRI machine.

My MRI is next week question did they put you in head or feet first because I have a plate and some metal screws in my ankle from a break that I suffered

My ENT only asked if I had metal in my head or my shoulders.

You should have your results before my MRI so I hope the results are good my MRI is scheduled for a week from this Saturday.

 

[DSF767]

So my MRI is scheduled for Saturday and day by day as that gets closer I keep researching more and more and and the more I'm convinced I have an AN. with my Mixed Hearing loss and Mild Tinnitus I feel like my symptoms are very Classic AN and that's what worries me most.

Alot of others I have heard have just tinnitus or hearing loss that isn't mixed but with my exact symptoms I feel like its highly likely at this point.

 

[Hazel]

So my MRI is scheduled for Saturday and day by day as that gets closer I keep researching more and more and and the more I'm convinced I have an AN. with my Mixed Hearing loss and Mild Tinnitus I feel like my symptoms are very Classic AN and that's what worries me most.

Alot of others I have heard have just tinnitus or hearing loss that isn't mixed but with my exact symptoms I feel like its highly likely at this point.

Don't jump to conclusions! I read somewhere that even in case of one sided hearing loss and tinnitus, the odds of it being caused by AN is only between 1% to 10%. In most cases, the hearing loss remains unexplained. Sorry, I tried to find the link for you where I found this info, but wasn't able to track it down.

My MRI is next week question did they put you in head or feet first because I have a plate and some metal screws in my ankle from a break that I suffered

My ENT only asked if I had metal in my head or my shoulders.

You should have your results before my MRI so I hope the results are good my MRI is scheduled for a week from this Saturday.

They put me in head first, i.e. only my head and shoulders entered the machine.

I get my results tomorrow, will let you know!

 

[CCsMom14]

@DSF767 - I think if you read enough on the Internet, you'll be overwelmed - I finally had to stop researching, and am seeking a second opinion. I know I have scoured the internet looking for "cases like mine" - but remember, we're all unique - good luck - I've taken up some old hobbies like sewing to keep me distracted in the evening - when I am tempted to "research some more" on the web - please let us know how you do!

 

[Hazel]

Hey there, I got my MRI results and I'm all clear! Quite a relief. I fully expect the same for you @DSF767!

I found some stats that indicate how unlikely AN actually is, to hopefully help ease your mind. Here are the stats I mentioned earlier; in a blog by an ENT, he refers to several studies that indicate a likelihood of at most 10% that one sided hearing loss is caused by AN: https://fauquierent.blogspot.nl/2012/07/what-is-asymmetric-nerve-hearing-loss.html

Also, you might want to take a look at these survey results from a survey conducted among about 5,000 TT users: https://www.tinnitustalk.com/attachments/hub-survey-report-pdf.9777/ If you take a look at Q15, you'll see that of the group that has (some) hearing loss, about one-third has hearing loss in only one ear. Surely, the vast majority of those people do NOT have AN. To me, this shows that asymmetric hearing loss is quite common and can have many causes.

My ENT says we'll probably never know what caused mine, and I'm ok with that. Monitoring for any further hearing loss if of course paramount, so I'll have another audiogram in 3 months.

Best of luck, and stay positive!

 

[DSF767]

Hey there, I got my MRI results and I'm all clear! Quite a relief. I fully expect the same for you @DSF767!

I found some stats that indicate how unlikely AN actually is, to hopefully help ease your mind. Here are the stats I mentioned earlier; in a blog by an ENT, he refers to several studies that indicate a likelihood of at most 10% that one sided hearing loss is caused by AN: https://fauquierent.blogspot.nl/2012/07/what-is-asymmetric-nerve-hearing-loss.html

Also, you might want to take a look at these survey results from a survey conducted among about 5,000 TT users: https://www.tinnitustalk.com/attachments/hub-survey-report-pdf.9777/ If you take a look at Q15, you'll see that of the group that has (some) hearing loss, about one-third has hearing loss in only one ear. Surely, the vast majority of those people do NOT have AN. To me, this shows that asymmetric hearing loss is quite common and can have many causes.

My ENT says we'll probably never know what caused mine, and I'm ok with that. Monitoring for any further hearing loss if of course paramount, so I'll have another audiogram in 3 months.

Best of luck, and stay positive!

Thats great news Haz I hope my results come out the same! Your hearing loss was it mixed (both bone and air hearing loss do you have any idea what your speech discrimination percentage was?)

Thanks for that article I hadn't come across that one yet.

I will let you know when I have my results next week Happy Thanksgiving to you!

 

[CCsMom14]

Awesome sauce @Hazel - I actually got a second opinion yesterday - new ENT - who thinks I have/had a viral infection of my inner ear!!

 

[Hazel]

Thats great news Haz I hope my results come out the same! Your hearing loss was it mixed (both bone and air hearing loss do you have any idea what your speech discrimination percentage was?)

Hi there, well my results were a bit inconclusive wrt to the conductive versus sensoneurial hearing loss. The audiogram seemed to indicate mostly conductive loss, but the ENT was convinced that this was a false result (this can happen when the sound travels through the bone of your head to your other - good - ear). The reason he thought this was because another test - the one where they hold a tuning fork behind your ear and then next to your ear - did not show conductive loss. So unclear results. I guess this also demonstrates how tricky measuring hearing loss accurately is.

Sorry, I don't know my speech discrimination percentage, not sure if they tested that. I can post my audiogram results if you like...

Awesome sauce @Hazel - I actually got a second opinion yesterday - new ENT - who thinks I have/had a viral infection of my inner ear!!

Yeah, I'm thinking this is probably the most likely cause for me as well, since most other things have been ruled out. Did he also mention whether this can be diagnosed or not? My understanding was not...

 

[DSF767]

Hi there, well my results were a bit inconclusive wrt to the conductive versus sensoneurial hearing loss. The audiogram seemed to indicate mostly conductive loss, but the ENT was convinced that this was a false result (this can happen when the sound travels through the bone of your head to your other - good - ear). The reason he thought this was because another test - the one where they hold a tuning fork behind your ear and then next to your ear - did not show conductive loss. So unclear results. I guess this also demonstrates how tricky measuring hearing loss accurately is.

Sorry, I don't know my speech discrimination percentage, not sure if they tested that. I can post my audiogram results if you like...



Yeah, I'm thinking this is probably the most likely cause for me as well, since most other things have been ruled out. Did he also mention whether this can be diagnosed or not? My understanding was not...

Thanks here is my Audiogram don't know if yours looked similar to this:

I think you have less hearing look then me but it does not seem to effect me day to day for the most part I am very glad you came out clear and I am hoping I am the same still very nervous though as I am sure you can imagine

 

[CCsMom14]

Hi there, well my results were a bit inconclusive wrt to the conductive versus sensoneurial hearing loss. The audiogram seemed to indicate mostly conductive loss, but the ENT was convinced that this was a false result (this can happen when the sound travels through the bone of your head to your other - good - ear). The reason he thought this was because another test - the one where they hold a tuning fork behind your ear and then next to your ear - did not show conductive loss. So unclear results. I guess this also demonstrates how tricky measuring hearing loss accurately is.

Sorry, I don't know my speech discrimination percentage, not sure if they tested that. I can post my audiogram results if you like...



Yeah, I'm thinking this is probably the most likely cause for me as well, since most other things have been ruled out. Did he also mention whether this can be diagnosed or not? My understanding was not...

@Hazel - my new ENT - a female (about 4 years out of residency) told me that they really can't diagnose the SSHL due to viral infection - but since I did have an ear infection about 5 days before symptoms started to manifest, that she thinks this is the case. Ironically for me the tinnitus did not start until day 3 of the prednisone - and peaked after I finished my 12 day course. She told me that the increased noises and pops were a sign that my hearing was trying to return to normal - I told her I would make an appointment for 3 weeks out and at that time, we would (together) see if it made sense for me to have an MRI. I have no dizziness and with just the one bought of vertigo with vomiting (which was 3 weeks ago) she said "all signs point to a viral infection". Right now, it seems that cold wind (even with ear protection) seem to set the ringing on fire. She did however, do a very thorough exam and ask me so many questions - quite the shift from the last ENT (Mr. Green Pants, I refer to as) - she told me she has seen about 5 cases this week alone of similar hearing impairment following a virus.

@DSF767 - I will see if I can scan and post my audiology test. But I remember seeing it and the curve was down in the first part of the test - and my word recognition was 100% - sending good thoughts for tomorrow.

 

[DSF767]

Well I'm sitting in the office right now waiting for my MRI needless to say very nervous.

I still think an AN is my issue but i guess I'll find out soon stilling hoping it's not even though I'm very positive it is (thanks dr. google)

 

[CCsMom14]

Well I'm sitting in the office right now waiting for my MRI needless to say very nervous.

I still think an AN is my issue but i guess I'll find out soon stilling hoping it's not even though I'm very positive it is (thanks dr. google)

Let us know how it went - sending good thoughts

 

[Dna_420]

Any update @DSF767 ? I have my mri on Tuesday , so nervous can't sleep or eat

 

[DSF767]

Any update @DSF767 ? I have my mri on Tuesday , so nervous can't sleep or eat

@Dna_420 No they wouldn't tell me anything at the MRI. They said i had to wait until next week to get the results from my ENT.

They did give me the CD which I'm not going to look at because of other things I've read saying there is lots of stuff that lights up so i could easily misread it i don't want to make myself more anxious then i already am.

I read your post on here as well and saw you have similar symptoms how much hearing loss did they find with you?

 

[Dna_420]

@DSF767 im glad your MRI went ok, no point looking at it as we wouldn't know what's what, are you going through NHS or private?

They said I have a little loss in my left ear , looking at the chart I can see it's circled at 40db and right one at 20db,

I have major health anxiety so I just think they will find something bad

 

[DSF767]

@DSF767 im glad your MRI went ok, no point looking at it as we wouldn't know what's what, are you going through NHS or private?

They said I have a little loss in my left ear , looking at the chart I can see it's circled at 40db and right one at 20db,

I have major health anxiety so I just think they will find something bad

@Dna_420 i live in the US so went though my private insursnce i should have the results sometime next week and obviously if you have read my other posts in thinking they are going to find an AN for sure.

Do you happen to have a copy of your audiogram like i posted above is it anything like mine?

 

[Dna_420]

@DSF767 the ENT didn't give it to me but yes it looks like yours expect the cross was at 40db

I live in London and the ENT I'm seeing is pretty qualified , he doesn't think it's AN but because I have one sided T and slight hearing loss they have to do an MRI on the safe side, what worries me is what if they find something else

Do you have a slight balance issue? Neck stiffness? Headache?

 

[DSF767]

@DSF767 the ENT didn't give it to me but yes it looks like yours expect the cross was at 40db

I live in London and the ENT I'm seeing is pretty qualified , he doesn't think it's AN but because I have one sided T and slight hearing loss they have to do an MRI on the safe side, what worries me is what if they find something else

Do you have a slight balance issue? Neck stiffness? Headache?

@Dna_420 i don't really have balance issues, neck stiffness, or headaches.

From what I've read at the high end a 10% chance of having an AN with our symptoms you can look at the link Haz posted above.

 

[Dna_420]

@DSF767 I think we will be okay , don't worry, do you still have T?

 

[DSF767]

@DSF767 I think we will be okay , don't worry, do you still have T?

@Dna_420 yes i still have my T though its very faint in the morning if i sleep well and gets louder throughout the day though in a scale of 1-10 it probably peaks at a 3.5

 

[Dna_420]

@DSF767 that's the same as me, right now I would say it's 3.5 but if I get up in the middle of the night it's probably a 6

If my son screams I can instantly sense my T go up and up

Did you just have the T out of no where or was it noise induced?

 

[Dna_420]

@DSF767 mri done, that was scary , felt like I was in a coffin !!

Doctor thinks it looks ok but have to wait for official mri report

Hope you are doing ok ,

 

[Dna_420]

@DSF767 do you have any update buddy? Hope you are ok!