Could I have an AN

[Kitnmama]

Hi everyone, I wanted to get your input on this before I pursue this further.  For about the past 5 years, I have had a buzzing in my left ear. It is not only audible, but tangible, like something tiny rattling very fast in my ear.  It sounds like a low base violin note. It is off & on and only noticeable when the house is completely quiet. It seems to be caused from traffic noise or possibly distant music from somewhere....the reason why I believe this is because it goes away when I stick my finger in my ear or press my hand on my ear.  It also went away when I took a trip to the California desert and I was far from any roads. Earplugs do not stop it for some reason, even the silicone ones. The tangible aspect of this buzzing is what I find most annoying.  Anyway, about 3 years ago I saw an ENT for this, and he couldn't figure out what it was. I didn't get an MRI but He did some kind of pressure test that "ruled out a brain tumor".  My hearing was still excellent, although very slightly less on the left than the right.  He ended up telling me I could have the beginning of Meniere's disease.  I thought this was ridiculous since I had none of the "drop attacks" that are the hallmark of this disease. 
The buzzing continued, some days worse than other days, but usually had to use a sound machine at night to mask the sound and the sound seems to stop the tangible effect too.  Then 2 years ago I went on a cruise, and a rocking sensation started as soon as I got off the ship.  This rocking sensation has persisted 24/7 for 2 years. It includes feelings of the same gravitational effects one would feel on a rocking ship.  I did some research and found out it is probably "Mal de Debarquement" syndrome, as it started the moment I got off a cruise ship.  However, now I wonder if this non-rotational type of vertigo  I have and the buzzing are linked somehow. I never went back to the doctor because I just know I am going to get the big runaround with all the tests. There is no effective treatment for Mal de Debarquement and most doctors don't even know what it is. Most people get all these tests and no help so I haven't bothered.  My hearing continues to be excellent and I can hear a watch tick from several feet away with my left ear.
Recently I read a book where the author had a buzzing in his left ear, and it turns out he has an acoustic neuroma.  I had never heard of this until now. Now I am wondering if it is the cause of both my problems. 
Does anyone have an AN but without any hearing loss?   Also I am wondering if anyone has rocking sensation like a boat that started after getting off a boat or plane.  I am also wondering if anyone gets the buzzing but a finger in the ear stops it.  Thank you for your help, God Bless You all on your journey. 

[Kaybo]

Hello and Welcome!
I can't say that I experienced any of the things that you do, but I wanted to welcome you here.  I think that everyone here would agree that the ONLY way to accurately diagnose an Acoustic Neuroma is to have an MRI w/ contrast.  If you have good insurance, I would go back to the ENT (either the original or another) and request one.  If you have had these symptoms for over 2 years, I would think that would qualify for the Dr. to deem it necessary to have further testing to get to the bottom of this.  I don't know if I would mention the other syndrome that you suspected after your cruise experience, I would just mention all your symptoms and when they started.  For peace of mind, I would need to do something!
Please let us know what you find out!
K

[Jim Scott]

Kitnmama ~

Hi.  I'm not a doctor and can't offer much information on your tinnitus and disequilibrium issues except to reiterate Kay's ('Kaybo') counsel to request an MRI scan from your ENT to rule out (or verify) the presence of an acoustic neuroma as the culprit causing the symptoms you've described.  Guessing and speculation from what you read on the internet can be frustrating and ultimately, counter-productive to finding relief from the symptoms plaguing you.  Unfortunately, many doctors are not that familiar with acoustic neuromas and can inadvertently mis-direct you or waste your time with 'remedies' that don't address the real cause of your symptoms.  This is why we suggest you try to have an MRI scan.  It remains the 'gold standard' for discovering the presence of an acoustic neuroma in the skull and if that is the actual cause of the symptoms you've described, it's discovery will save what could be valuable time in addressing the tumor, which, in almost all cases, is benign but located next to critical nerves that, if damaged by the growing tumor, can present you with some vexing problems.  If an MRI shows no AN, you'll have peace of mind on that score and perhaps find what really is the source of your symptoms. 

I wish you success in securing the MRI scan and of course, should an acoustic neuroma be found, we're here to help and support you.  Please send us an update.

Jim

[msmaggie]

Welcome, but sorry about your symptoms!  Yes indeed. do get an MRI  w/contrast.  You won't be able to get a diagnosis for AN w/out it.  Then you can either cross it off your list or make plans to deal w/it if it is indeed an AN.

Priscilla

[Keeping Up]

Welcome but can't help I am afraid.  I do hope you find a cause so you can move on to a treatment! 

Just one note - not all MRIs are done with contrast.  I had no contrast and my little AN showed up clear as clear.  I do think it might be the resolution of the machine as you could see the three nerves on this MRI (in the good ear) as otherwise consummed on the AN side.  (I put in some urgent calls to the ENTs office when I heard the MRI needed contrast and a few people had wasted their time when it hadn't been ordered  - I was told you don't with this type of machine.  (Just a small FYI)).

[suboo73]

Hi Kitnmama! 

Just wanted to tell you my experiences - and i agree with everyone, that you need to get a MRI.
I have had hearing loss for 12-15 years.  During that time, i have been to two local ENTs and had two hearing tests (for mild hearing loss.)  They told me i was getting 'old' (i was about 40 then!)  Well, after my sister's doc sent her for an MRI almost immediately last year (and she has an AN), i went to a major medical center and asked the ENT to write the order for a MRI.  You can guess the rest, i have an AN, too. 

I was really frustrated with the local ENT docs; then i realized they just don't have the experience with ANs.  (My sister is lucky - her ENT was smart and sent her for the MRI right away - and her tumor is 2X the size of mine.)  I am so sorry my sister has an AN, and so grateful she spurred me on to seek other doctors!

So good luck in your research, and don't hesitate to ask lots of questions and seek other opinions.
My thoughts and prayers are with you as you seek answers.

Sincerely,
Sue

[ppearl214]

Hi Kitnmama and welcome.

Many experience the tinnitus in life, much of what you note... that can be caused for many reasons.  My grandmother had it all of her life due to a perferated ear drum.... I have it due to an AN. As many noted here, the only way to know if you have a "mass" (ie: Acoustic Neuroma) is by MRI with contrast (the contrast is VERY important to help give a clear image of a "mass"). 

I learned over time that too much internet research trying to figure out all of my ails in life can actually be an issue.  Please make sure you put yourself in proper hands, rule out an AN (ie: MRI) and keeping fingers crossed that, regardless of what is causing your issues, that it is not an AN.

Again, welcome.
Phyl

[Sue]

Hi Kitnmama,
I"ll try to answer some of your questions.  Before I knew I had an AN, I went on a cruise and ended up with a short lived (thank heaven) case of "Mal de Debarquement".  I had that for maybe 3 weeks or so.  It wasn't terribly bad, but I felt like I was still on the boat.  Very weird.  I'm going on a cruise in March and I'm hoping that doesn't happen to me again.  But, I'm still going on my cruise. 

My ENT did NOT diagnose me.  Some ENT's are on top of their game, other's are not.  I complained of tinnitus, had hearing loss, told him I had a "funny taste" in my mouth and had fullness in my ear, but since I did not have any significant balance issues I was not given an MRI.  I was given a CAT scan, which showed that I "had no tumors".  I wish that I could go back in time and have a "do over" in that man's office.  But I can't, sadly. Because I would have done things differently.  But, since I can't I'll tell you to take control of your own health issues and make sure that you see another doctor or make sure that the doctors that you see are listening to you.  Another thing you might do is to read this very informative article on how your balance system works and it also talks about issues that a person has when the system has gone awry.  I didn't realize I had some of these things going on for several years before I was diagnosed.  It could be possible that you've experienced some of these problems and haven't even realized it.  It can be very subtle sometimes.

http://www.hearinglosshelp.com/articles/balancesystem.htm

Tinnitus can be caused by many many things, as you know.  This was the first symptom that I was aware of. Nothing stops my tinnitus, and I don't think I've read about anyone being able to stop it they way you can, but then, everyone on here has a little bit different story, so yours could be another variation.   Then my hearing went quite quickly. but some people have pretty good hearing when their AN is discovered.  It sometimes is because the AN is very small still and hasn't done much damage to the hearing nerve. 

Obviously, I'm not a medical professional but I've never heard of a "pressure test" to rule out a tumor.  Maybe some kinds of tumors, but not an Accoustic Neuroma/Vestibular Schwannoma tumor.  As everyone has said, you must have an MRI with contrast.  And since insurance companies seem to rule the roost on what you can and cannot do, you will need to figure all of that out.  They can cost anywhere from $1700-2500, I would guess.  Depends on the facility and such.  Anyway, chances are you do not have an AN, but then, maybe you do.  Won't know until you have an MRI. 

Good luck,

Sue in Vancouver USA

[leapyrtwins]

Kitn -

yes, it is possible to have AN without hearing loss.  I just talked to a woman last night who's only symptom was vertigo.

As the others have said, you really need to rule out or confirm an AN, so your best bet is an MRI.  And, if it were me, I'd insist on gadolinium contrast.

Good luck.  Let us know how it turns out.

Jan

[calimama]

Hi...

Ditto what all suggest... get an MRI... this i THINK is the only way to "rule out" an AN. That's why i got an MRI, unfortunately, it was ruled in!

Like Keepingup, i did not have contrast on my MRIs (maybe on the 3rd of the three i had, it was a different machine, but i can't really recall... i know i had dye for the CT scans before and after surgery).

In hindsight, my first presenting symptom of my AN was the ringing. I recall first becoming aware of it in 2001... on a quiet day looking out the window. I dont really remember it after that (either it was so mild, or it faded, or i adjusted) but by 2005, i remember googling the noise and calling it tinitus. I complained to my doctor about in late 2005 (was told it was a terrible thing, but nothing i could do).

I do not remember when i first became aware of the hearing loss (which grow worse over the years til i was dianosed in Jan 08). But i know several years ago (say 2004) i sense i was not hearing as well, and as it progressed I would tell friends about my "bad ear". I also remember walking down the street and finding that sirens (e.g. fire engines) really bothered me and made my head scream. I started covering both ears when one would pass me. By the time my AN was diagnosed, i was told i had lost about 25-30% of hearing (all at very high frequencies).

So that's my story, and everyone is differentn. An MRI is really no big deal so just do it. I am mildly claustrophobic, but i managed fine (relax, clothes your eyes, and it will over in no time).

Hope it is nothing, but best to find out for sure.

Good luck,
Trish

[AMD]

Hello....

My AN symptoms were tinnitus (ringing) in my ears and hearing loss.  This all started around the time of my senior year in high school / beginning of college.  It went undiagnosed for over 8 years because of no MRI.  I'm a nurse and constantly thought about the need to get one, so I finally did.  I called my doc and told him I wanted an MRI and after he saw me in his office, he agreed I needed one as well.  I don't claim to know a lot about anything, but I sure don't know of any test that can rule out tumors.  MRI's (preferably with contrast and specifially focused on the internal auditory canals) are the gold standard for AN diagnosis along with other tumors too.  My MRI was done with the first half no constrast and the last half with.  That's how they are typically done.  The constrast generally allows for better visualization because the mass absorbs it in order to show clearly.

I too have had the rocking sensation for about a week after a cruise once.  This was before I realized I had the AN, but I definitely DID have it at that time.  It was worst at night when I tried to lay down and close my eyes.  I did ask one neurosurgeon at work about this and he told me if it lasted more than 2 weeks to see a neuro doc.

So, with all that said, please don't be afraid to just go ask for an MRI.  Just having piece of mind will be worth it.  And, if it turns out to be something there, then you'll know and you can move on with treatment options.  Good luck to you.

-Amy