Author Topic: With these symptoms, could I possibly *not* have an acoustic neuroma?  (Read 34667 times)

Jill_S

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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?






CHD63

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #1 on: October 26, 2015, 10:30:48 am »
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
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

arizonajack

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #2 on: October 26, 2015, 10:57:12 am »
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.



3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

jaqiday

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #3 on: October 26, 2015, 12:39:08 pm »
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.
Right AN 3.2cm 2-27-15
Retrosigmoid 3-9-15 6 hours
Facial nerve paralysis, dry eye, balance problems
Finding a new normal...

Jill_S

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #4 on: October 26, 2015, 01:29:33 pm »
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.



jaylogs

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #5 on: October 26, 2015, 02:44:10 pm »
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
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

PaulW

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #6 on: October 26, 2015, 07:03:37 pm »
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.
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Jill_S

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #7 on: October 27, 2015, 10:47:44 am »
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!

KeepSmiling

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #8 on: October 27, 2015, 01:21:17 pm »
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!
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

Jill_S

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #9 on: October 27, 2015, 01:41:26 pm »
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.
« Last Edit: October 27, 2015, 02:33:42 pm by Jill_S »

Jill_S

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #10 on: October 30, 2015, 03:43:16 pm »
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!


PaulW

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #11 on: October 30, 2015, 04:05:03 pm »
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


10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

rupert

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #12 on: October 30, 2015, 04:06:25 pm »
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.

ppg01080

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #13 on: November 04, 2015, 10:34:07 pm »
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

PaulW

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Re: With these symptoms, could I possibly *not* have an acoustic neuroma?
« Reply #14 on: November 05, 2015, 03:29:20 pm »
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.
   
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!