ANA Discussion Forum
General Category => Inquiries => Topic started by: sardeans on August 11, 2009, 08:56:09 pm
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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.
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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
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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! ;D
We are here for you on this journey.
My thoughts and prayers are with you.
Sincerely,
Sue
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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.
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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.
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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
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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
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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
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Ditto on the contrast. Insist on it!
Grace
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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?
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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
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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
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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
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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 ;D
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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!
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Well, I had my follow up appointment with the ENT. My hearing is stable, however it turns out to be low frequency loss (I had thought it was high frequency loss). The doctor wasn't as dismissive about the throbbing pains this time around, partly because it has persisted for 3 months and mostly because previously he thought it was on the other side. When I corrected him that it was on the side of my bad ear, he seemed to take it a bit more seriously. The worsening of the high pitched ringing tinnitus also got the wheels turning a bit.
He did another CT scan. If that is turns out normal, then he will refer me to a TMJ specialist. It that turns up negative, then he will evaluate the situation for possible MRI. He claims that the insurance companies will balk if the proper course of starting out simple isn't followed. I pressed about the ability of CT to rule out an acoustic neuroma and he agreed that MRI was the way to go, but we're not there yet. If the follow up after the TMJ doesn't prompt the MRI, then I plan to get a second opinion.
By the way, in my research I've read about nystagmus. Just yesterday, I noticed while on my computer that my eyes were twitching and the letters/words on the screen were darting back and forth very fast and lasted for about 15-20 seconds. That made me recall at least a dozen times within the past year or so that has happened while reading or on the computer. They seemed to be isolated and infrequent and therefore I don't know if that is normal in the population at large or another "symptom" to note. I didn't mention to the doctor simply because I just now made the connection. Does anyone have any insights to this infrequent twitching? It seems most cases that I have read about are very frequent and disruptive, therefore I'm reluctant to add this to my list.
Also, I've read conflicting research that low frequency hearing loss is either uncommon for AN or that it accounts for as much as 1/3 of AN's. Further, AN's that result in low frequency loss affect nerves that aren't affected by ABR stimulus. Therefore, my negative ABR could be explained by the low frequency loss (assuming I turn out to have one).
Anyways, I will have to wait for clarity and just hope that the ENT doesn't call me into the office regarding the CT result (that likely wouldn't be a good sign).
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sardeans -
you may or may not have an AN, but the best way to find out is to have a diagnostic MRI with gadolinium contrast.
If it were me, I'd ask for that before I went through any more testing. Lots of people who have ANs are misdiagnosed for a very long time when a simple MRI would give them the answer they seek.
Good luck,
Jan
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Sardeans ~
I heartily agree with Jan. An MRI shortcuts all these tests that may come to nothing. My Primary Care Doctor ordered an MRI for me based on his assumption that I had a 'sinus problem' (I didn't). The insurance company didn't balk at my doctor ordering an MRI scan. The MRI results showed a large AN (too big for radiation). I found a neurosurgeon and had my removal surgery within less than 4 weeks of my diagnosis. Again, no problem with the medical insurance (Blue Cross). If the MRI shows nothing, these tests you're contemplating may well be of some value but if it shows an AN, the tests will have been unnecessary and wasted time. I would definitely push for an MRI, first, to rule out a tumor.
Jim
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Sardeans, Hi again.
Yes, i heartily agree with JIM & JAN. My earlier audiograms were inconclusive and the first two ENTs did not recognize my symptoms.
When i went to the third ENT, where they even treat ANs, my audiogram was still inconclusive. But, when i asked, he had no problem writing the script for the MRI and my insurance covered it. I had my answer in less than a week, after retrieving the MRI report myself directly from the facility.
I was very angry for a long time at the first two docs. But, the reality is they just didn't put two and two together to suspect an AN.
I am also thinking they didn't see many patients with ANs, so they just didn't know.
I am very grateful for the third ENT believing in me and ordering the MRI to rule out a possible AN.
It took my sister about 6 weeks to have an answer. It took me over 12 years - go figure.
My thoughts and prayers continue for you and your extended family.
Sincerely,
Sue
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Sardeans~
I agree with JIM, JAN and SUE!!! ;D
I also understand that you and the doctor are stuck in the middle with the insurance issue. There is is that politics aspect in health care management/insurance companies. (hate to see what the future may hold in that category but we won't go there >:( )
Doctors may get "brownie points" when ordering the less expensive tests vs. expensive tests. IMO he could get the MRI if he really wanted to.
You are well "armed" and won't settle for less! Just may take a little longer.
Good luck- keep fighting!
Maureen
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I certainly intend to stay on top of the situation and see things through. I will be patient to an extent, however if he doesn't think an MRI is necessary if the TMJ angle doesn't pan out, then I intend to insist or seek a 2nd opinion. I am too well informed at this point to ignore the potential severity of my symptoms. Thanks again.
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I certainly intend to stay on top of the situation and see things through. I will be patient to an extent, however if he doesn't think an MRI is necessary if the TMJ angle doesn't pan out, then I intend to insist or seek a 2nd opinion. I am too well informed at this point to ignore the potential severity of my symptoms. Thanks again.
Sardeans,
So glad that you ARE staying on top of the situation - WONDERFUL!
If i came on a little forceful about the MRI, it is only because i do not want someone's symptoms to get so bad that they suffer needlessly.
I am one of the fortunate ones with minimal symptoms at this point = and maybe Watch & Wait will work for me. But i am sure glad i know what i am up against.
My best wishes on your journey to find out the true answers, and relief from your symptoms.
Keep us posted - we are here for you!
Sincerely,
Sue
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Just a quick update that I have an MRI scheduled for Wednesday morning. Originally, the ENT wanted to rule out TMJ first. However, as my insurance doesn't cover TMJ unless there is a "congenital anomaly" (I couldn't get a straight answer for a definition), they decided to go ahead and proceed with MRI. I confirmed that the order is for an MRI of the brain with a focus on the IAC and that it will be with contrast. A close friend is a radiologist for the group that covers the facility where I am scheduled. He is going to be sure that a radio-neurologist reads the image rather than a generalist. Not that it takes a neurologist to see AN, but if I don't have AN, then hopefully that will be the most qualified specialist to see anything else that could be the cause of my symptoms. If nothing else, then I will sleep a little better at night. I'll keep posted with any developments, but as they say regarding MRI's of the brain... "No news is good news".
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Hi sardeans and sounds like things are falling into place for you. To rule out (hopefully) the possibility of the AN, you are doing everything right... MRI with contrast really will give you answers... and heck, send me the films. I know how to read them! :D Had mine done yesterday (yep, a Sunday!) and read my films when I got home (my radiation follow up is this Thursday)... and trust me, I know what I saw for me ;) and here's hoping your's is a "negative read". :)
good luck and please keep us updated.
Phyl
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Hi sardeans and sounds like things are falling into place for you. To rule out (hopefully) the possibility of the AN, you are doing everything right... MRI with contrast really will give you answers... and heck, send me the films. I know how to read them! :D Had mine done yesterday (yep, a Sunday!) and read my films when I got home (my radiation follow up is this Thursday)... and trust me, I know what I saw for me ;) and here's hoping your's is a "negative read". :)
good luck and please keep us updated. Phyl
Sardeans,
Ditto what Phyl said (except i am not very good with reading MRIs...!)
Sounds like you will be getting some answers soon, and great to hear that the radio-neurologist will read the films!
(I don't even know if i generalist read my first MRI - hhhmmmmmmm- but they did recognize the AN regardless, even after 12+ years misdiagnosis.)
Best wishes for an uneventful trip thru the TOG (Tube o' Gloom) and keep us posted when you can.
Sincerely,
Sue
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Good luck with everything tomorrow.
Grace
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Congrats on getting that MRI appointment! Tomorrow is the day.
Enjoy your nap in the TOG.
Maureen
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Sardeans -
looking forward to an update.
Jan
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Had the MRI this morning. I felt like I was in The Swan (for any fellow "Lost" fanatics). My friend who is the radiologist called within an hour to tell me the IAC looked normal, so no AN! The radio-neurologist looked briefly and confirmed. I believe this was based on a quick look, therefore, I presume he still needs to read the entire scan to rule out any other neurological issues. This is a big relief, although I unfortunately don't have answers to what is causing the symptoms. Thankfully, they are tolerable and I can sleep well knowing what is not causing them. Perhaps I'll explore the TMJ angle further, but for now I am content to see how things progress and take whatever course of action the ENT recommends. Thanks to all for your input and support. I wish you all the best in your AN journeys and hope for good outcomes.
Cheers.
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Good to hear that it isnt an AN...Now to find out why you are having theses symptons...good luck
JO ;D
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Sardeans ~
I'm pleased to learn that your MRI doesn't appear to show an acoustic neuroma or other kind of tumor. This is definitely cause for celebration! However, it also leaves you (your doctors, really) with the challenge of finding the source of your problems. I like your philosophic attitude and hope you'll have an answer, soon. Thanks for your encouraging words.
Jim
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Hi Sardeans,
I share the sentiments of my moderating cohort in crime Jim (as well as others) that I am thrilled to learn you don't have an AN... and sending wellness wishes your way as you continue the search for answers... hoping they come soon and are easily fixed. Please hang in there....
Be well,
Phyl
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Good news about no AN, but still ??? ??? ??? about what is causing your symptoms.
Keep truckn :)
Maureen
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Thanks for the update, sardeans!
Great news!
Jan
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Hi Sardeans,
So happy to hear your good news! [The Swan, i like that!]
Hope you can find some answers to your symptoms ??? --
In the meantime, sleep well and stop by anytime.
Sincerely,
Sue