Possible AN?

[Viktor92]

Hello. First off I want to apologize for posting my concerns on this forum, but I really don't know where to turn while waiting. I don't expect anyone here to diagnose me or whatever, but hopefully give me some relief!

I'm 20 years old and have been experiencing problems with my right ear for 2-3 years now. I got a constant fullness feeling in my ear, no pain, no pressure, just feels odd compared to the other ear(like I can't open the eustachian tube, and the urge to pop that ear)
I'm also experiencing "wonkyness"(hard to explain. doesn't affect balance, just feels wierd, even when sitting still, so not sure if related), twitching on my right eyelid alot(may be worth to mention I didn't notice this twitching until I found out about AN, so could very well be stress/anxietyrelated).
I haven't noticed any significant hearing loss, no tinnitus, no numbness/vertigo etc.
Been having migraines for at least 3-4 years, once - twice a month.

I've scheduled an appointment with an ENT in a few weeks. I had an apointment with an ENT 2 years ago which I didn't attend to because I was on vacation, and since then I haven't payed much of attention to the symptoms until now. This really scared me, the possibility of it being an AN and that I've waited this long!

I'm freaking out, can't stop thinking that it's a big AN causing this..

Again, sorry for posting it on this forum, I just want some input while waiting!

[Kathleen_Mc]

You have turned to a wonderful place for support during this time, a great bunch of folks here. Although finding it's AN will not be nice you likely will find relief in knowing what is wrong so you can deal with it appropriately.
My symptoms started around the age of 17, diagnosis wasn't until 23 because the doctor didn't look into my concerns well enough, I do hope this doesn't happen to you and you soon find out the cause of the problems you are having.
I wasn't aware of my hearing loss pre diagnosis although I was down to 50% in that ear!
My early symptoms were headaches, difficulty sleeping and facial numbness which started out as something that would come and go and then eventually was permant.
For some reason the neurologist I saw believed these things were psychosomatic and did not do appropriate testing, he believed I was "too young" to have a tumor.
Thought are with you
Kathleen

[Viktor92]

Thanks for your response Kathleen!

I got some headaches too, but I don't think it's related in any way, mainly since it's on the opposite side. I'm really glad you found out the root to your problems at least, even though you were misdiagnosed for several years. I'm trying to calm myself down since I don't have any of the "key"-symptoms(significant hearing loss, balance issues, numbness in face etc), so I don't think it's any harm in waiting for the appointment, even though I wish to find out the cause ASAP.

Again, huge thanks to you for responding, and to all others on this great forum!

[Viktor92]

I updated the originalpost with some additional info about migraines, thanks for any answers !

[leapyrtwins]

Viktor -

no need to apologize for posting your concerns on the Forum; that's what it's for.

Some of the symptoms you mention - twitching eye, migraines - aren't necessarily symptoms of an AN; they could mean anything - including stress.  Fullness can be a symptom (it was one I had). 

The only way to tell for sure if you have an AN is to get an MRI of your IAC (inner auditory canal) with gadolinium contrast.  If you have an AN, the gadolinium will cause the tumor to "light up" on the MRI film.

You might want to consider seeing a neurotologist as opposed to an ENT.  Lots of ENTs, at least where I live (Chicago area), don't have experience with ANs.

As for thinking you have a "big AN", it's worth noting that sometimes people have very small ANs that cause big (or numerous) symptoms, while some people have large ANs that cause small (or few) symptoms.

So, don't freak out.  You may or may not have an AN.

Good luck and keep us posted,

Jan

[Viktor92]

Hi again! Been really busy with school, and tried to not think of this issue much, is why I haven't been online for a while.

Thanks for the comfort though! I've been more relaxed lately and the twitching is pretty much gone, so that's not a worry anymore. I visited an ENT today, and did a hearing test, and some wierd test that tested the transport of signals to the inner ear, seemed normal. On the hearing test I had some difference between the ears. On my "good" ear I had out-of-the-charts-hearing(extremely good, didn't even fit in the diagram), while I had abit worse on my other ear(10-20 db difference, high frequencies). I got good hearing(around 0-15 DB on the "bad" ear, -10 on the "good") on both ears according to the test , so is it a worry? He said everyone has some hearing difference between the ears.

He said that the fullness/discomfort I'm experiencing is all in my head even though I tried to be persistant... I don't know where to go from here, I really don't have any extreme symptoms(maybe wait and see if it gets worse?) or try another ENT / neurologist?

Thanks alot for your responses! Much appreciated

[Jim Scott]

Viktor ~

Only an MRI - preferably with contrast - can credibly confirm whether or not you have an acoustic neuroma.  Of course, I hope you do not.  If your ENT won't order an MRI (they are expensive) you might consider seeking another doctor who will.

Jim

[PaulW]

Hi Victor,
Did they do a bone conduction hearing test as well?
If there is a significant difference between bone conduction and the normal air conduction hearing test that is a good sign that your hearing nerve and cochlear are fine and its not an AN, but there is a mild deficit with your ear itself.

If the bone conduction and air conduction tests are the same, and there is slight hearing loss especially in the high frequencies that may indicate a nerve or cochlear problem.

Another way to potentially find out if you have a possible AN is through a head impulse test
http://headimpulse.com/knowledge-center/videos.
If you have balance nerve damage this test will pick it up.

Some of the things that you are describing certainly match the symptoms of an AN, it can of course be a number of things, including a virus..

Maybe worth pushing for an MRI with contrast if your symptoms continue over the following weeks, and if some of the tests above are suspicious 

[arizonajack]

He said that the fullness/discomfort I'm experiencing is all in my head

Any time a doctor tells you it's all in your head, get another doctor.

My friend was told that for many years when he was in his 20s. Finally ended up having lung surgery when he was 27 to fix the problems.

[LizAN]

Any time a doctor tells you it's all in your head, get another doctor.

Amen to that!  Doctors say that when THEY have no clue.

[Viktor92]

Viktor ~

Only an MRI - preferably with contrast - can credibly confirm whether or not you have an acoustic neuroma.  Of course, I hope you do not.  If your ENT won't order an MRI (they are expensive) you might consider seeking another doctor who will.

Jim

Okay, I will try to meet with another ENT and get to the end with this issue ASAP, probably gonna take another few months though :/.

Thanks

Hi Victor,
Did they do a bone conduction hearing test as well?
If there is a significant difference between bone conduction and the normal air conduction hearing test that is a good sign that your hearing nerve and cochlear are fine and its not an AN, but there is a mild deficit with your ear itself.

If the bone conduction and air conduction tests are the same, and there is slight hearing loss especially in the high frequencies that may indicate a nerve or cochlear problem.

Another way to potentially find out if you have a possible AN is through a head impulse test
http://headimpulse.com/knowledge-center/videos.
If you have balance nerve damage this test will pick it up.

Some of the things that you are describing certainly match the symptoms of an AN, it can of course be a number of things, including a virus..

Maybe worth pushing for an MRI with contrast if your symptoms continue over the following weeks, and if some of the tests above are suspicious

Basically the only tests my ENT did were the two I listed: First he did some check on how the signals was transferred to the inner ear(he put in some sort of earplug in my ear), and it showed the result in curves/mountaintops or how you explain it haha , but he didn't comment anything on this test so I assumed it was normal. Then he did a "normal" hearing test as far as I know. He checked some tones between 250 - 8k Hz range, and this is where the difference was shown, then I got sent home since my hearing was above "normal".

Thanks for the info about the tests, going to check it out, maybe talk to my next ENT about it, and hopefully he will take it somewhat seriously

Any time a doctor tells you it's all in your head, get another doctor.

My friend was told that for many years when he was in his 20s. Finally ended up having lung surgery when he was 27 to fix the problems.

Yeah, it's so frustrating when a doc tells you it, and he has no clue how it feels. Been having fullness for about 3 years and I simply can't stand when they tell you it's in your head......
I'm sorry to hear about your friend ending up in surgery because of a doc telling him that

Thanks again for all your responses, much appreciated. I will keep you guys updated

[BlueSky]

Hi Viktor,
I wanted to let you know that I took 3 tests at my ear doc's (I can't remember what they are called) but he recommended them because they might show us how my AN is positioned and help with treatment options. I know one was they put air in your ear to mimic motion, and another was listening to a series of clicking and popping noses and seeing how that signal traveled to my brain. The other one was similar in that it was clicking and popping noises but with my head lifted at an angle. All weird/interesting stuff!!

All tests came back completely normal, and I have good hearing in both ears. The doctor told me that he uses some of these tests to check for a possible AN and I did fine on them.

I am asymptomatic right now and would have never known about my AN if it hadn't been for an unrelated issue I got the MRI for. I think its good that I found it early so I can have time to research my options. I think if you feel your doctor isn't taking you seriously I would try and find another.

[leapyrtwins]

Any time a doctor tells you it's all in your head, get another doctor.

Unless of course the doctor is talking about tinnitus - in which case, it really is all in your head 

Jan

[pjb]

He said that the fullness/discomfort I'm experiencing is all in my head

Any time a doctor tells you it's all in your head, get another doctor.

My friend was told that for many years when he was in his 20s. Finally ended up having lung surgery when he was 27 to fix the problems.

I had that experience with my daughter on numerous occasions starting at 16 up until 35 will not go into all the details but the doctors dismissed her as too young, growing pains etc., and thank goodness I was a persistent mom and she had some major masses that now have been removed and thankful not cancerous as well. I just wished I would have pushed more for my own personal diagnosis with an AN..

Best Wishes,

[chloes mema]

Jan

LOL!!   

Karen