Possible AN?

[sardeans]

I am afraid that I could possibly have an AN and am looking for insights based on my symptoms and history.  I have a follow up appoint with the ENT next week and I plan to press for an MRI to be sure.  Below are my symptoms and history.  Thank you in advance for any advice.

About a year and a half ago, I noticed that my hearing was muffled in the right ear.  Normal conversations weren't too bad, but I could notice trouble hearing soft talkers or in crowded venues.  A subsequent hearing test revealed a 20% reduction and I was diagnosed with idiopathic unilateral sensorineural hearing loss (although the ENT said it could be Meneier's disease). 

Symptoms at the time included the unilateral sensorineural hearing loss, a very occasional slight imbalance sensation (but never spinning vertigo), occasional ringing tinnitus and more frequent crackling/popping sounds in the affected ear.  Also, I was experiencing frequent (yet intermittent) pulsating tinnitus that is best described as a swooshing sound that is in perfect sync with my pulse (also in the affected ear).  It was only noticeable when quiet and still; mostly lying down.

The Meneier's route seems unlikely, because I had none of the classic symptoms, plus an ENG test turned up nothing. The doctor put my on a water pill and low sodium diet and retested my hearing to no improvement.  At the time, an ABR and CT scan revealed nothing unusual.

About three months ago, I developed an ear ache behind my ear which persisted for a couple of weeks leading up to my follow up with the ENT.  He retested the hearing and the results hadn’t changed; still a 20% hearing loss.  I told him about the ear ache and he dismissed it because the ear drum looked fine, but indicated I should follow up if it persisted, rather than wait for the next 6 month check up.  Since that appointment, the ear pain has persisted for 3 months.  It is an intermittent throbbing pain behind the ear that radiates around the top, back and bottom and feels like it is farther inside my head than simply the eardrum.  The pain feels like a dull pressure induced pain rather than a sharp, shooting pain but can be intense, however bearable.  It comes and goes several times a day and rarely skips a day.

For a couple of weeks, the ringing tinnitus was more frequent, but that has subsided.  Lately, the crackling, pressure type noises have subsided also.  I occasionally get slightly off balance, but not dizzy or vertigo.  I have no facial numbness or vision problems.

I realize the symptoms can vary and I also recognize the rarity of AN’s.  I don’t want to jump to conclusions or self diagnose, but if anyone can validate these symptoms as something of concern then I would feel less of a hypochondriac pressing the doctor for an MRI.

Thanks.

[sgerrard]

Well, I think you are right, you may possibly have an AN.

I don't think it is unreasonable to get an MRI in your case.

When I complained of a plugged up ear and hearing loss, I was (finally) referred to an ENT who had me do a complete audiology exam. She took about two minutes to conclude that I had an interesting audiogram, that I had unilateral sensorineural hearing loss, and that I needed to get an MRI. I asked how much they cost, and she said it didn't matter, I needed to get one.

I have the feeling that to many ENTs, unilateral sensorineural hearing loss is a sufficient indicator for getting an MRI, and that you can't diagnose other causes, such as Meniere's Disease, until an MRI rules out acoustic neuroma. One thing that is apparent if you look around on the forum, though, is that issues in this part of the head often don't match the classic cases, so it could easily be Meniere's or something else, even if your symptoms don't match.

We hope you don't need to join our club, but welcome anyway.

Steve

[suboo73]

Hi Sardeans!

Sorry to hear you are not feeling well, but perfectly understand what you are going through.

I was 'put- off' by two different ENTS for 12 + years as my hearing tests were inconclusive.
Then my sister describes the same type of symptoms and has an MRI inside 1 month - oh my gosh!
So i left my local town, went to a major medical center and asked - please, may i have an MRI?

I know ANs and similar conditions do not have to be 'large' to cause problems.
I would say that you should gently 'insist' on the MRI - it worked for me.

Please ask all your questions, as many times as you need to!  I am still asking, learning to understand medical reports, and hearing about the different treatments.
The folks here are FANTASTIC!   

We are here for you on this journey.
My thoughts and prayers are with you.

Sincerely,
Sue

[sardeans]

Thank you all for the sentiments. 

As I'm sure you all can attest to, it's frustrating having such symptoms and trying to speculate whether it could be something as serious (and rare) as a tumor or something as simple as "just one of those things".  Trying to characterize every symptom, pain or noise is difficult enough, but trying to reconcile them with the general descriptions on most web sites is harder.  Based on searches of this forum, it is evident that each person's symptoms are unique and vary.  While my pain and symptoms are not severe or disruptive to daily living, the prospect of them getting worse and the desire to catch something as early as possible are motivation enough to be persistent.  However, I recognize that by educating myself to the symptoms of AN, that I need to be careful not start misinterpreting or imagining symptoms that aren't.  I'll keep you posted.  Thanks again.

[Lilan]

I agree with what you seem to have concluded: that you have enough symptoms to warrant an MRI. That doesn't mean you'll have a tumor, but I can see why you're at the point where you'd like to rule it "in" or "out" with a proper test.

[Kate B]

Sardeans,

You have noticed some symptoms which warrant all of your questions. AN?  As you said...Maybe...maybe not... I have  found that the three P's: persistance, patience, and perserverance are the key character traits needed.  I remember having symptoms and being told it was the flu! Gosh, I never had a flu like that. Eventually, I asked for an MRI which the doc agreed to and voila, the rest is history.  You know your own body and when things are acting differently inside.  The patterns change.

Persist and Perservere.


Kate

[Kaybo]

HI!  I read this very quickly but I'm not sure anyone mentioned that you need not only a MRI but one with CONTRAST...make sure they do the contrast to get the most accurate picture possible...

K

[moe]

I was just going to say the same thing about the contrast with the MRI.

In my opinion,One sided hearing loss is the number one reason to get an MRI. Don't know why your ENT doc didn't order one.
I had myself diagnosed with Meneier's disease trying to figure out why I felt so "off." But I did NOT have vertigo. Just the dizziness, imbalance, tinnitus.
Symptoms are so varied and lots of people are pleased to learn they do NOT have an AN.
Let us know, and try not to fret. If it is an AN, it is slow, benign, and options are many.
Maureen

[GRACE1]

Ditto on the contrast.  Insist on it!

Grace

[sardeans]

It appears that the MRI with contrast is a must.  Which leads me to wonder: How useful was the CT scan (presumably without contrast; I didn't ingest anything, nor was I injected with anything) that was performed previously?  Originally, I was put at ease that the result showed no tumor.  Based on my research, I'm beginning to question whether that was relevant in diagnosing anything other than a large tumor.  I've also read that the ABR test has a 33% false negative rate.  Would it be a stretch for both tests to yield a false negative?

[ppearl214]

Hi Sardeans and welcome.  Example.. I had a head CT the other day done without contrast for other reasons than AN... I alerted the CT team of the AN.. they noted it didn't show up.... head MRI's w/contrast, if one exists, will "light up" on the films and give the docs a real good idea of size, location, etc... otherwise, it may not show as clearly (or at all).......  I would also suggest the MRI w/contrast so the docs can get a real good look at what is going on.

Just my 2 cents... and again, welcome.
Phyl

[Sue Vogel]

Hi Sardeans,  You have received some good suggestions to address your symptoms.  The Gadolinium injection with your MRI will reveal the difference between normal tissue and abnormalities.  It's almost a necessity to answer the big question.  I strongly advise you to pursue this.  You articulated my AN symptoms to perfection.  I had the hearing loss, off balance, pressure headaches, pulsatile tinnitus...I was misdiagnosed with Meniere's Disease for more than four years before the injection MRI was ordered.  The walnut shaped object in that film was a no-brainer (not a pun.)    There are many things that can cause the symptoms of an AN and still not be an AN.  The bottom line is that you need answers and the opportunity to eliminate possible culprits.  The injection MRI will help you do this.   You're doing all the right things.  Continue to gather information and ask questions.  You are your own best advocate to find your answers, but be cautious not to self-diagnose.  Regardless of your outcome, knowledge is power.  As Kate said, persevere.  Good luck.

SUE

[Keeping Up]

Hi Sardeans

I am a newbie and a 'watch & waiter'.  I always have to pipe in ... I have a small tumor, that was easily shown on a MRI without any contrast.  I think it depends on the technology of the machine.  [I will ask the ENT why the contrast isn't used with these machines at my next appointment - curious, but happy, why I didn't need it!]  I got my CDs a few months later (and also same day on my follow-up) and this accountant can see the tiny tumor without any issues.  So, contrast makes it easy to see, but isn't absolutely necessary. 

I have also been around these boards long enough to learn, like the others say, your symptoms are indicative of an AN, but certainly not a firm diagnosis.  I have been told a CT would never pick up my small tumor - very different technology.

Good luck getting the MRI soon.

Ann

[mimoore]

Welcome
I went misdiagnosed for 10 years. I saw two different ENTs, one even put a tube in my ear ( that just wasted a year). I wish I had known to push harder for an MRI. Follow your gut and know we are here for you. I knew in my heart something was up and that it would manifest it self and that is exactly what happened, I stumbled often, and my face went numb then I was determined to find the cause. My Dr. felt poorly for brushing me off- I felt he had become a bit desensitized over the years.
Let us know how things go and hopefully your not in Ontario it can take months to get an MRI.
Michelle

[sardeans]

Thanks again for the support.  It's funny, the more I read, the more I try to recall every possible symptom or episode.  I'm sure there is a psychosomatic element at work. However, in the past day or two the throbbing behind the ear seems to be radiating into my face (cheek, temple and to a lesser extent the top of the jaw).  The pain is not severe, more of an aching sensation, but enough to get my attention.  I've also noticed a much lesser amount of similar sensations on the opposite side (of the "bad ear").  Of course, that only confuses the issue for me and makes me question if I'm worrying too far up the wrong tree.  With the added awareness, I've recently noticed a subtle high pitched ringing that seems to only be noticeable when there is no background noise and I'm very still (which is not often with young kids).  Previous episodes of ringing tinnitus were infrequent, momentary and brief that drowned out all background noise.  The crackling/popping noises are frequent and long lasting; I don't even know if those are to be referring as tinnitus.  I don't have dizzy spells or vertigo, only infrequent sensations of disequilibrium.  But now, I'm recalling the occasional times when I would walk square into the door frame for no reason and wondering if it's related (likely not since I didn't feel dizzy, just being in a hurry and not paying attention).  Other than those kinds of occasional clumsiness, I don't have balance issues. 

Regardless, my ENT appointment is Monday.  So, hopefully the MRI (with contrast, of course) will follow soon and I can get some clarity and hopefully a negative result.  In the meantime, I need to stop obsessing and focus on the fact that it's far likelier to be something other than tumor.   I'll keep you posted.  Thanks!