ANA Discussion Forum
General Category => Inquiries => Topic started by: Jill_S on October 26, 2015, 09:14:41 am
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Newbie here.
I am a 51 y. o, diagnosed with unilateral high-frequency sudden sensorineural hearing loss about 2 1/2.weeks ago. The hearing in my right ear is almost perfect. Since I am a musician and a birder, they tested beyond 8,000 hz, all the way up to 12,000 hz. In my right ear, I heard tones at 12,000 hz at 10 DB. The hearing in my left ear is normal all the way up to just before 4,000 hz, but then drops off steeply into moderate-severe, severe, and profound loss. I had 100% speech recognition in both ears. My ENT, while not actually saying it, implied that I was "lucky," and that as far as sudden hearing loss goes, I was in pretty good shape.
At the consult, he mentioned that he would normally be required to order an MRI to rule out other posssible diagnoses (didn't mention AN by name, but I'm sure that's what he was thinking), but since my sudden hearing loss didn't fit the classic criteria (at least 30 DB loss across 3 consecutive standard frequencies - i.e. The results at 12,000 hz do not "count" for the official diagnosis, even if they showed a dramatic asymmetry in my case) he wasn't going to order it.
At the same time, he also only spent about 30 seconds questioning me about relevant health history. I mentioned that for quite some time now I had been having problems understanding conversations in loud spaces. He didn't comment on that one way or the other. He asked me no questions about balance or whether or not I felt like the hearing problems I've subjectively had for a while we're one-sided.
He gave me the standard tapering course of Prednisone and suggested that I would likely see at least some recovery. But, no, I have not seen any. Or, I see a little, then notice it slides back down again.
So, in desperation this weekend, I started doing my own research into other possible causes of my hearing loss and was frankly dismayed to see how well my sometimes subtle but long-term pattern of symptoms matches those shown by sufferers of AN. No matter that I received a 100% in speech recognition in my exam, I know I struggle in noisy environments. I know it is always me, not my husband who needs to crank up the volume of the TV. I also suddenly remembered that at one point two years ago, I noticed that when I sang in a live space, I sounded louder and a little weirder on my left side. Now I'm thinking that that bizarre loudness was already a paradoxical sign of unilateral hearing loss, in the form of "recruitment."
Then there are the balance issues. The ENT probably didn't ask me about them because I checked "No" for balance problems on their medical history form. And I checked: "No," because, you know, I can stand and walk and I don't fall down thank you very much! However, this weekend when I started thinking about it some more (while reading about AN), I realized that I have indeed been having issues, but dealing with them by avoiding activities, working harder to focus more or compensating In some other way. Examples:
Had major difficulty attempting to go down an escalator with one hand on a large, heavy suitcase, a second hand for a smaller bag and no third hand to hold on to the handrail. I kept feeling like the large suitcase was pulling me over, forward and down and I wouldn't be able to keep myself from toppling. I eventually gave up and asked another traveler to help me w/ the bags.
When I bird on very uneven terrain, I feel like I need to lean against something, else I will topple downhill.
Over the past year or so, I've developed the unfortunate habit of not making clean passes through doorways and hitting the doorframe instead. One day I actually wrote down in my to-do list: "Do not walk into walls today!!"
Then, there is the issue of strange sensations in my left cheek and upper and lower lips -- a little tingly, crawly, maybe a little numb, a little coldness. I've felt this on and off for about ten years. However in the last month it seems to have gotten worse.
All together I think these symptoms look suspicious. This morning I called the ENT back and requested a diagnostic MRI w/ gladolinium contrast. While I was composing this post, the office called back saying yes, they would have the imaging center call me and set something up within the week. Now I am just waiting for their call. I have done all I can do at the moment, including probably way, way too much anticipatory research into treatments options and outcomes.
So, really there is nothing I can do except clear my mind of the matter in the short term and try to have a nice, happy, carefree week anyway. And here, finally, is where I ask anyone here who has the time and imagination and expertise to spare to help me do two things:
1) Convince me that I don't necessary have an AN -- that all these symptoms add up to something else, or shouldn't be added together. Could I really still have idiopathic sudden sensorineural hearing loss with this? Maybe the facial tingling is due to previous bad dental work? Withdrawal or side effects from Prednisone? Maybe the balance problems are just due to aging? Maybe most people have problems going down escalators when they loaded down with bags and can't hold the hand rail? Doesn't everybody walk into a wall now and then?
2) Since I am too much of a realist to believe the stuff above (unless I get some help), maybe you can convince me that I will not necessarily turn out to have a large or relatively fast-growing AN. I am concerned that it will be because I have facial sensation issues and I read that the AN has to grow out of the ear canal and press on the trigeminal nerve for this to happen. Which would mean fairly large, no? And with this sudden hearing loss, fairly aggressive? But on the other hand, my hearing on the left side is still fine for speech in most circumstances and the tinnitus I have is very mild. If the AN were large enough to touch the trigeminal nerve, wouldn't it have already destroyed most of the hearing on that side? Wouldn't I have more pronounced balance issues?
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Hi Jill_S .....
Whether you ultimately have an acoustic neuroma or not, you are welcome to gather further information here in the meantime. The ANAUSA site is a wonderful source of accurate information.
That being said ..... thank you for the comprehensive background on your particular situation. A couple of things come to mind in your story: 1) as you have already surmised, there are many other conditions that can mimic the symptoms of an AN 2) as a musician, you are much more keenly aware of your own body, especially hearing and 3) 51 is far from being old enough to chalk up your symptoms to aging.
You are absolutely correct to insist upon an MRI with contrast, given your history and symptoms. Please try to not over-analyze things until you have the results (I no ..... easier said, than done!).
Many thoughts and prayers and please let us know what you find out.
Clarice
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All I can say is that symptoms of an AN (like what you describe) can be gradual and partial.
Get an MRI with contrast ASAP.
You'd be foolish not to.
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My symptoms were similar. I was diagnosed in Feb this year, I was 58. (just turned 59) Facial mouth numbness, my eye felt weird and irritating. I was losing my balance and would bump into walls in my house. I had tinnitus for years but noticed my hearing was diminishing. What sent me to the dr was a headache that lasted over a month. Alone each symptom wasn't much. Add them all up? Now it's looking like I had an AN. I went to my GP who referred me to ENT and also ordered the MRI. They both insisted it was rare and I didn't have one. I knew something wasn't right.
I had the MRI with contrast and the GP called me within an hour. I had a 3.2 AN pressing on my brainstem.
Some things to consider:
Trust your gut, you know your body.
Get the MRi done and go from there.
While it's very stressful waiting and wondering, keep in mind if you do have an an, you will now know and will get it treated.
Size and symptoms do not necessarily go hand in hand. Small/large ANs can cause much trouble in one person and none in another.
Good luck and keep us posted.
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Yes, I'm definitely getting the MRI. Still waiting for the imaging center to call, though. They said sometime today.
"Size and symptoms do not necessarily go hand in hand. Small/large ANs can cause much trouble in one person and none in another." Ah ... there you go! :) Very helpful!
Surprisingly, I'm finding that for the first time in forever I actually want to thoroughly clean the entire house. (I mean, WTF? I hate to clean!) I've just discovered that our back room had some wonderfully dirty window sills that definitely need attention. Great! I suppose I just need to exert control in some way at the moment.
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Hi Jill! I'll be anxious to hear your results of your MRI. As stated by the others, a lot can mimic an AN. Those of us that have been on here a while have read many people who SWORE they had it only to find out...nada! So, try to remain optimistic and wait for the MRI results. And keep that house clean! :)
Jay
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2) Since I am too much of a realist to believe the stuff above (unless I get some help), maybe you can convince me that I will not necessarily turn out to have a large or relatively fast-growing AN. I am concerned that it will be because I have facial sensation issues and I read that the AN has to grow out of the ear canal and press on the trigeminal nerve for this to happen. Which would mean fairly large, no? And with this sudden hearing loss, fairly aggressive? But on the other hand, my hearing on the left side is still fine for speech in most circumstances and the tinnitus I have is very mild. If the AN were large enough to touch the trigeminal nerve, wouldn't it have already destroyed most of the hearing on that side? Wouldn't I have more pronounced balance issues?
There are lots of things that can cause these problems, most are less trouble than an Acoustic Neuroma.
As for some of your other questions.
Does it need to be big to touch the Trigeminal Nerve.... No... it could be 1cm. The distance from the edge of the Internal Auditory Canal to the Trigeminal Nerve is only about 5mm.
Does Rapid Hearing Loss mean fast growing tumour? again no. Lots of people have lost their hearing suddenly with a 1.0cm tumour.
I lost most of my hearing in 12 hours and my tumour was 10mm at the time. Fortunately it came back.
There are people that have had no hearing and poor balance with a 1cm tumour, and others who had no problems at all with an 8cm tumour...
You really cant tell.. The majority of AN's are detected before 3cm
Try and stay calm there are lots of things it can be.. and even if it is an AN, you may be able to simply observe it, as many do not grow.
I chose to have mine zapped.. It was 35 minutes under the Cyberknife machine. Then life continued on.
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2) Since I am too much of a realist to believe the stuff above (unless I get some help), maybe you can convince me that I will not necessarily turn out to have a large or relatively fast-growing AN. I am concerned that it will be because I have facial sensation issues and I read that the AN has to grow out of the ear canal and press on the trigeminal nerve for this to happen. Which would mean fairly large, no? And with this sudden hearing loss, fairly aggressive? But on the other hand, my hearing on the left side is still fine for speech in most circumstances and the tinnitus I have is very mild. If the AN were large enough to touch the trigeminal nerve, wouldn't it have already destroyed most of the hearing on that side? Wouldn't I have more pronounced balance issues?
There are lots of things that can cause these problems, most are less trouble than an Acoustic Neuroma.
As for some of your other questions.
Does it need to be big to touch the Trigeminal Nerve.... No... it could be 1cm. The distance from the edge of the Internal Auditory Canal to the Trigeminal Nerve is only about 5mm.
Does Rapid Hearing Loss mean fast growing tumour? again no. Lots of people have lost their hearing suddenly with a 1.0cm tumour.
I lost most of my hearing in 12 hours and my tumour was 10mm at the time. Fortunately it came back.
There are people that have had no hearing and poor balance with a 1cm tumour, and others who had no problems at all with an 8cm tumour...
You really cant tell.. The majority of AN's are detected before 3cm
Try and stay calm there are lots of things it can be.. and even if it is an AN, you may be able to simply observe it, as many do not grow.
I chose to have mine zapped.. It was 35 minutes under the Cyberknife machine. Then life continued on.
Thank you! Very, very helpful!
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I agree with those here who advise you to get an MRI immediately. Look at my posts here and you will see how we regret it deeply that the first otolaryngologist that my husband saw in 2009 did NOT mention anything about an MRI or an acoustic neuroma. Then one day in November 2012 he realized he was deaf. If only we could turn back the hands of time and replay this. If only we could have questioned more about the tinnitus. My advice: Push your doc to order the MRI now. If the doc won't do it, find another doc. Get it done.
Don't delay-Good luck!
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Yes, the MRI appointment (with *and* without contrast) is set up for Monday at 5pm. Yay!
I was worried about issues of claustrophobia and loudness, so I did a little more on-line research. In the process, I learned something about myself. I now believe I have cleithrophobia (fear of being trapped) rather than claustrophia (fear of enclosed spaces) as I have always thought. Interesting. As long as I know that there's someone there to help me out, it shouldn't matter how tight it is. We'll see. I'm also pretty good at the deep breathing thing.
I checked out videos of MRI's on-line and they do seem to make a lot of startling and very loud noises. Potentially a problem with the serious hyperacusis I now have in the bad ear. I'll have to make sure to bring good ear plugs.
I'll let you all know the results when I get them.
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Late this afternoon, I received a call from the imaging center saying that approval from my insurance company was still "pending," so I need to reschedule. :-[
Well, at least it hasn't been denied outright.
Just want to know!
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Not sure what you pay for an MRI in the US these days, prices have plummeted in Australia.
My last MRI in Australia without any govt subsidy or insurance was usd $600 with and without contrast
That was in the latest 3t machine...
There is an old machine in town which is $275.
Damn insurance companies. Will probably cost everybody more arguing over the approval than the MRI itself
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They will supply you with ear plugs. The noise really isn't that bad with plugs. What I do is take some cold medicine or something to make me drowsy, then just close my eyes and relax. If something like that affects you greatly, get someone to drive you. They can also put a mirror in there. If you open your eyes you don't see the tube you see out and can see the whole room giving it an open feeling. It's pretty uneventful if you just relax and close your eyes. As far as being denied, if it's a referral issue you might have to go back to the ENT and get a referral. Good luck.
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Jill-
I have a 4mm x 7mm AN that is causing balance issues, hearing loss and taste issues among other problems. I was told by a neurosurgeon that he wouldn't recommend surgery because I have a very high risk of facial paralysis. It's interesting that you had to request an MRI. My diagnosis was textbook. I failed a hearing screening. I was referred to an audiologist. The audiologist said my results looked like a person with an AN and I was sent to have an MRI done.
Post when you get the results of the MRI. When I have an MRI done I take an anti anxiety drug. The last one my husband had to hold my hand because I panicked.
Patty
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Unfortunately there are many reasons to cause hearing loss..
MRI's were previously thought to be too expensive to detect AN's
One study stated that detection rates were 1:100 for MRI's for hearing loss.
Therefor the cost of AN detection at the time the paper was written was $1,000,000 per AN
Unfortunately this thinking seems to have continued.
There are other cheap tests that can be done to improve the detection rates.
My doctor sent me for a CT-Scan which was "Suspect"
My ENT said he would not have referred me to an MRI with my hearing results, and it was only because of the CT scan.
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All hearing loss is not equal. The typical profile of the graph for an AN patient's hearing test can only be caused by two things, Meniere's disease or an AN. I'm sure in the history of all hearing loss there are exceptions to this, but basically, if your graph looks like mine, and all of ours, it is only going to be caused by one of two things.
That is why I was referred for and MRI. It was because I had low frequency and high frequency loss and close to normal in between and this can only be caused by Meniere's or an AN.
As for CT scans, it seems like an attempt to save money while exposing the patient to high doses of radiation unnecessarily.
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Well, the insurance finally came through and I had the MRI this morning. I was worried about claustrophobia and loud noises. I had no problems whatsoever with the claustrophobia. I did however ask to plug my good ear as well as the bad ear when we had a break 1/2 way through. It was uncomfortably loud without the earplugs.
I will have the results either: On Monday, if the ENT office calls as soon as it gets the images; On Tuesday, if I am game enough to go in and pick up the CD myself; or at the latest on Thursday when I have an appointment with the ENT.
I am trying not to freak myself out, but I did notice that the RMI technician went from relatively cold and blase before my exam, to warm and solicitous afterwards. Not exactly a poker face, but maybe he was just happy that I didn't freak out and got through the exam OK, after I mentionned that I was potentially claustrophobic.
I have one-sided moderate to severe hearing loss only in the high frequencies. Below 4,000 hz, I am fine in the bad ear. This seems like an AN-pattern to me.
I have had an additional complication since the last time I posted. Very early Monday morning (say 12:30am) I woke up with my heart absolutely racing and beating very erratically. I got myself to the ER and they diagnosed me with atrial fibrillation (pulse was between 130 and 150 bps). My first ever episode! They admitted me, put me on a calcium channel blocker and gave me a shot of a blood thinner. My heart converted back to normal sinus rhythm after about 2-3 hours on the meds. Now, I am out of the hospital and on a beta blocker. I'm not sure if the beta blocker (metopronol) is doing any good and it is giving me lots of side effects: fatigue; brain fog; diarrhea; and worst of all worsening tinnitus!!! The drug is ototoxic! (On the plus side, it might have helped me keep calm during the MRI.)
Anyway, I am going to try to convince my cardiologist to help me get off them when I see him this afternoon. I am a little concerned about this because when I mentionned the sudden hearing loss in the hospital they just brushed it off and seemed totally unconcerned. I am also concerned because of the potential rebound effect if I try to stop the beta blocker on my own w/o medical supervision.
They did all kind of tests and everything came up within normal range. My blood pressure before the medication was 117/70 (now it's 100/70); lipids in the normal or very good range; thyroid on the high side, but still within normal. I am fit and not at all overweight (5'6" 116). There is no pattern of early onset heart disease in my large extended family. My hunch is that the episode was triggered by Prednisone withdrawal. It came on one day after my last dose, so it really seems like too much of a coincidence. Besides, I have been really stressed out recently.
Hopefully, I can get the cardiologist on board with this theory and convince him to help me wean off this new drug.
And, of course, waiting for the results of the MRI.
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I am in the same situation. Instead of tingling I have had some nerve pain albeit on the other side of my mouth. In reading up I also see vertigo is an early symptom which I had many years ago. As if I couldn't be any more traumatized I now question why the ent did not sound an alarm 7 years ago when I was first diagnosed with nerve hearing loss. My current ent says not to worry but how does one not spend every waking moment not worrying?
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I had a similar episode with high blood pressure and getting put on beta blockers. I ended up with low blood pressure and I couldn't even stand without almost passing out. Stress does many things to our bodies. I know now I do not have high blood pressure unless I am in a dr office (white coat syndrome :)
This is all very stressful. Try taking a walk and get your mind off all this. Hard I know but helpful.
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I have one-sided moderate to severe hearing loss only in the high frequencies. Below 4,000 hz, I am fine in the bad ear. This seems like an AN-pattern to me.
That is not the pattern of hearing loss that typically accompanies an AN.
Why do you say metoprolol is ototoxic?
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I have one-sided moderate to severe hearing loss only in the high frequencies. Below 4,000 hz, I am fine in the bad ear. This seems like an AN-pattern to me.
That is not the pattern of hearing loss that typically accompanies an AN.
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So, what is the typical pattern then?
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I have one-sided moderate to severe hearing loss only in the high frequencies. Below 4,000 hz, I am fine in the bad ear. This seems like an AN-pattern to me.
That is not the pattern of hearing loss that typically accompanies an AN.
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Okay, after reading a couple of articles I have come to the conclusion that there is no "typical" audiogram for AN patients. You could have anything from normal, to complete deafness, and any type of high, mid or low range loss and have, or not have, an AN.
Really, the only way to be sure of whether you have an AN or not is to get an MRI, which you did.
All of the various test like audiogram, ABR, ENG/VNG etc give your Dr important information, but do not indicate with any real certainty if you have an AN.
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Had the MRI Friday morning. The technician said that they would be read by the radiologist Friday after and my ENT would have them on Mon. (i.e. today). I haven't heard anything from the office all day. I'm thinking no news is probably good news!
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I am very happy to report that my MRI turned out to be totally normal. I am so happy, relieved (and surprised!) On the down side, though, I still have no clue what is causing my one-sided hearing loss and facial numbness. But, really not complaining that much!
I also want to apologize for taking the time of those who do have acoustic neuromas ... and thank you for all the support. This is a terrific forum!
I wish you all the best.
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Hi Jill_S .....
While we all are ecstatic your MRI was normal, it is frustrating to not have answers for your hearing loss. I would urge you to continue to seek answers about that.
If I were you, I would also monitor my facial tingling/numbness and if it gets worse to notify my doctor. Although extremely unlikely, if your MRI was done on a smaller or older machine and not a Tesla 3, it is possible to miss a teeny, tiny AN in between the slices. All this is not to frighten you ..... just be aware of any changes for the worse that could mean growth of something.
Thoughts and prayers and let us know what you find out about a diagnosis.
Clarice
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Well, maybe I'll have a look at the images myself.
I've gone from elation to tears today. I hadn't self-tested my hearing in two weeks. I thought it might be getting worse, but didn't really want to know. Buoyed by the positive MRI results, I went ahead a re-tested myself. The hearing in my left ear is a lot worse. In just two weeks. And I still have absolutely no idea why or what to do about it (the Prednisone treatment has obviously not worked at all.) I hate to say it, but at least with an acoustic neuroma diagnosis, I would have had some idea where to start and what I could possibly do about the problem.
Anyway.
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I have not researched thoroughly what I am going to post but from memory is correct.
Sensineural Hearing loss in one ear does happen without explanation and it's reasonably common.
A similar thing happens in Bells Palsy where your facial nerve stops working on one side.
Bells Palsy is thought to be a latent effect of a viral infection but cause remains unknown.
Likewise hearing loss without any identifiable cause does happen, and it's most likely similar to Bells Palsy in the way it works.. It's happens more often than an Acoustic Neuroma. So it could be just that and you may never find the exact cause.. Except the current theory that it's related to late viral effects.
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I have not researched thoroughly what I am going to post but from memory is correct.
Sensineural Hearing loss in one ear does happen without explanation and it's reasonably common.
A similar thing happens in Bells Palsy where your facial nerve stops working on one side.
Bells Palsy is thought to be a latent effect of a viral infection but cause remains unknown.
Likewise hearing loss without any identifiable cause does happen, and it's most likely similar to Bells Palsy in the way it works.. It's happens more often than an Acoustic Neuroma. So it could be just that and you may never find the exact cause.. Except the current theory that it's related to late viral effects.
Thanks Paul! Yeah, that corresponds with what I've read on-line and what I've heard from my ENT. I actually felt a little sorry for my ENT at my appointment today. It was clear he had nothing. No idea as to the real cause or the prognosis. I told him I'd spent the better part of the last three weeks w/ Dr. Google and that was what I'd seen online too (yes, I looked at real research. :-) ).
They had me re-do the hearing test and told me that there was "no change." I told him that I had indeed noticed that my hearing loss was getting worse. His response: "Well, that's why we have tests - so, we can be objective!" So, I asked to see the actual test results and believe it or not, they actually showed an additional 15Db loss at 8,000 hz (from 60 Db to 75 Db) as well as a 20% drop in speech recognition (from 100% to 80%). I asked him why he considered that: "unchanged" when it was clearly worse. He said that given my response to most of the pure tone test, I shouldn't have had that much drop in speech recognition. Therefore they are not counting it as a negative change. His explanation is that that is my brain, not my ear (i.e. not my department), or rather that I was "having a bad day." Um, well, I have noticed a significant drop in speech recognition on that side over the past few weeks, so it is not my just "having a bad day."
I am wondering if my brain has somehow "given up" on that side and needs to be trained or reminded to pay attention to it. Does this make any sense? Should I try to get a referral to a oto-neurologist? Is this something they deal with? (My ENT did not offer a referral, BTW.)
Sorry. I know .. I need to move on and get a new forum, since my issues are no longer AN related.
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You need to get a new ENT. The guy tells you that the test is objective, then applies subjective standards to it. 20% of something is significant. There may not be anything that can be done about it, or maybe there is, but 20% is something tangible.
I don't know what is the cause of your symptoms, unfortunately PaulW might be right. But, with this particular ENT's enthusiasm for even identifying that a problem exists, let alone finding a solution, he will never find an answer no matter what.
Scoop up your records and find a new ENT and see what they have to say.
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I can see where your ENT is coming from. Your symptoms appear to be nerve related on the inside of the skull. Not an area of expertise for an ENT..Its nice to know a cause for something but sometimes there isn't a clear answer. Un fortunately and it is quite common where there is no clear answer for the cause of sensorineural hearing loss. It looks like your ENT has exhausted his suite of tests and has proved that it is the nerve or brain.. again not unusual
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Hey Jill no problems being on this board...
I am sure you could continue to look for answers to your problem.
I think your ENT has not referred you on to anyone else because the chances of finding an answer from here are probably slim.
I have not heard of brains giving up.. From my personal un medical point of view the issues sound like it is the nerve between the cochlear and brain.
As for your hearing, a change at 8000hz would be considered minor as it is up around the frequencies that don't get used for speech. There are other hearing problems that you can have that are not picked up well in hearing tests. For instance the ability to detect volume changes..
People with nerve damage sometimes find that everything is significantly quieter on the defective side but can actually hear quiet sounds OK. Result they pass the hearing test, but are effectively deaf on one side when volume levels increase. Having all sounds distort when volume gets louder happens too. Again effectively making you deaf on one side in moderate noise, but still able to pass the hearing test. It looks like you have nerve damage, caused possibly by a latent virus effect, which can happen decades after the initial infection. Or possibly some disruption to the blood flow of the hearing nerve.
Whatever the cause it's too small to be seen on a scan. I think it is unlikely that you will find an answer. I am not a medical professional so please accept the above as my own personal opinion and always talk to your doctor
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Thanks for all the responses.
I had actually done fairly well at putting all this behind me and moving on with my life. I knew that my hearing was not improving and possibly deteriorating on the left side. However, I felt that even if I lost it all on that one side, it still wouldn't be the end of the world. So, I was in that happy place again.
But then tonight, when I was on the phone, I decided to check out the bad ear (the left), something I hadn't done in weeks. To my dismay, it was much worse. Basically no comprehension at all in that ear. The voice on the other end sounded very faint and garbled.
Worse yet, I'm now pretty sure my other ear is affected too. I've been noticing some high pinging tinnitus sounds in the right ear over the last couple of weeks. I'd been doing my best to ignore it, but since the left ear was so bad tonight, I checked out the right one and noticed a significant drop in the high frequencies.
I'm going to both call my ENT back and ask my PCP to refer me to an oto-neurologist. But at this point I feel like I am going through the motions. I don't have an acoustic neuroma, so no matter what I have (I'm thinking possible autoimmune inner ear disease now), it seems like corticosteroids are the treatment of choice. And I'm just not going there again, especially not long-term or high dose.
I'll probably just go deaf in a year or two and will have to accept things for what they are.
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Get another opinion. I went yesterday for a second opinion. I now have hope that I may save my hearing. I realize you do not have an AN but you are experiencing hearing loss and you need answers. It took 10 years for me to get a Lupus diagnosis for my daughter. I knew something was wrong.
Good Luck,
Patty
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Thanks Patty. I did indeed get a second opinion. Today, I was officially diagnosed with autoimmune inner ear disease. I had scads of testing done. The audiometry evaluation wound up being something of a horror show with my bad ear much worse -- all frequencies from 750 on up in the 85 to 90 DB range (whereas 2 months ago I had only high frequency hearing loss in the bad ear). Speech recognition in the bad ear plummeted from 80% at 60dbs to a new low of 40% at 90 Dbs. My good ear which tested 100% normal 2 months ago is now anything but. Moderate loss at low frequencies; severe loss at high frequencies. The only good news is that I still only have mild impairment at the mid-level frequencies and actually snagged a 100% speech recognition at 60Dbs in that ear. The objective tests of cochlear function showed abnormalties in both ears.
The oto-neurologist told me bluntly that I was going to deaf unless I took the immunosuppressant drugs he was prescribing. After looking at the scant research on this very rare disease (and reading the 3 or 4 personal accounts I've found on-line), I'm pretty sure I'm going to go completely deaf whether or not I comply. But the meds don't look that toxic, at least in the short term, so I'm giving them a try for a few weeks. At least that way friends and family will all be satisfied that I tried something, instead of just giving up.
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I just wanted to give a brief update -- in case someone else here winds up having autoimmune inner ear disease instead of an AN and because my last post was so bleak.
I did wind up taking the medication and it worked! I regained almost all my hearing in my right ear (in normal range now all the way up to about 5300 Hz and enough in my left hear that we can now start thinking about hearing aids. Back in January, I had "profound" loss in most frequencies in my left ear. Now a couple of these frequencies are borderline "severe/profound." We'll see. The audiometrist at first suggested a CROS device for the bad ear, but I really want to see if amplification makes any difference, before just giving up and going with the CROS.
So, if anyone out there does wind up with AIED, do not dispair!
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Jill,
Great news. I had my surgery 7 weeks ago. I lost all hearing in my right ear. I'll be looking into my hearing aid options in August.
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I just wanted to give a brief update -- in case someone else here winds up having autoimmune inner ear disease instead of an AN and because my last post was so bleak.
I did wind up taking the medication and it worked! I regained almost all my hearing in my right ear (in normal range now all the way up to about 5300 Hz and enough in my left hear that we can now start thinking about hearing aids. Back in January, I had "profound" loss in most frequencies in my left ear. Now a couple of these frequencies are borderline "severe/profound." We'll see. The audiometrist at first suggested a CROS device for the bad ear, but I really want to see if amplification makes any difference, before just giving up and going with the CROS.
So, if anyone out there does wind up with AIED, do not dispair!
Hi, I have AN on night side but started to have problems with my good ear, hearing loss without explanation. I am looking for right doctor and tests to find out what is going on. Right now i am on corticosteroid therapy. Please contact me, any help is very needed :)