New to AN, need your input and help...

[SVTCobra]

Hello everyone!  I just joined this board today… what an excellent resource!

I wanted to get some input from you based on my story.  I’ve recently (in the last week) went to an ENT specialist for a hearing loss problem on my left side, and he conducted an ABR test last Tuesday which came back abnormal on my left side.  I’m awaiting the call back from him on what happens next… but, I’d like some input from others.

Here’s my story from the start…

Back in 1989, I developed a high frequency hearing loss in my left ear along with constant tinnitus.  I saw an ENT specialist at the time, and they conducted an ABR test and felt that it was normal.  They concluded that I might have gotten a virus on my auditory brain stem nerve and it damaged the nerve cells.  I took this and ran with it over the past 15 years or so. 

However, in the last year I’ve noticed a dramatic decrease in my hearing capacity for my left ear.  The ringing loudness of the tinnitus is much higher, and in the last 6 months I’ve began having weird vision problems.  Also, I’ve begun experiencing balance problems as well of which I’ve never had before.  Thus, I thought I probably just needed a hearing aid since I’m getting older, and I was tired of making my wife repeat herself over and over.

I went to the ENT doctor the last week of August 2005 (the day Hurricane Katrina made landfall, weirdly enough) and I tell him my story.  He doesn’t mention AN, but I can tell that’s what he’s concerned about – he made mention that we are looking at a “high stakes poker game” with my condition, whatever that meant?  He said they would conduct an ABR test and an ECOG test.  He was hoping it might be Meneire’s disease or hydrops and we could fix it with medicine and diet.  But, my ECOG came back normal last week.  However, my ABR came back abnormal on my left side.  The audiologist told me the doctor would contact me with what to do next, and that he was out of town at a conference.  So, I’m awaiting their call back… my question is… does an abnormal ABR always indicate the presence of an AN, or could it be something else?

Do you folks think I could have actually had a very small AN in 1989 that they didn’t detect with the ABR, but it just grew slowly enough that I didn’t start having problems until now?  I haven’t had any facial numbness or anything.  But, this recent vision and balance problem makes me worry – it’s like I see lines and spots as I move my eyes from side to side or up and down.  Also, I have had some numbness in my left arm and hand at times.

This waiting for the call back is awful…  Thanks to all of you for your help!

[JHager]

Hi,

Welcome to the gang! 

And yes, waiting sucks.

Your story and mine are very similar - my hearing loss started around 91 or so, and was diagnosed until two months ago as the effect of many ear/throat infections as a kid.  And, like you, it was finally an audiologist who said Acoustic Neuroma, based on my very abnormal right-side hearing test.  I don't have the balance symptoms, but the deafness and tinnitus are the same.

That being said, the only way to truly diagnose an AN is via MRI with contrast.  (They inject gadolinium, a magnetically responsive metal, into your arm during the MRI).  Rather than waiting for your ENT to call back, I would call the office and state your suspicions that you might have an AN.  That, hopefully, will get the ball rolling towards an MRI.

Of course, waiting for the MRI is also frustrating.  If you live in or near a metropolitan center, you're likely to have a number of radiologists (with MRI's) nearby; if you're more rural, there will be fewer.  As soon as you know you're being scheduled for an MRI, call your insurance and tell them what's going on - it may get the approval and scheduling process done more quickly.

Until then, keep busy!  Waiting just drives me crazy!

Good luck, and keep us posted.

Josh

[russ]

Hello;
  I would walk away ( actually run away ) from an ENT who is ordering merely those two tests and not an MRI. Even in 89' they had Cat scans which are better than no imaging. Probably an abnormal ABR however, would indicate either the presence of an acoustic neuroma or a problem more exteriorly located in the ear, such as Menieres. The head wired for an EEG and listening to clicks during ABR, tests the length of sound delay. Thing is, Menieres generally presents first with a low frequency loss and an AN, a high frequency loss. Also, Menieres usually presents with sudden onset, incapacitating vertigo while an AN pt. might notice some dizziness or sense of being off balance or nothing at all.
  Best wishes in this!!
  Russ

[jw]

Hi, Cobra.

We have similar stories!  I've had hearing loss for at least 5 years and balance problems for that long, too.  Just thought I was clumsy!  I went for a hearing test in 1999 which they said was normal, but I couldn't hear well on the telephone on my right side.  My hearing got worse until I went to an audiologist in 2004 August.  I had a significant right-sided hearing loss and I was sent for an ABR. It came back normal with some nerve decrease and was outfitted with a hearing aid.  It went back for repair a few times and in August 2005 I took it back in because it just wasn't working - nothing was clear.  To make a long story short, I went to another audiologist for a 2nd opinion and he did a hearing test.  He was surprised that I had a one-sided hearing loss.  I had received an air-horn blast near my rt ear around 1995 and I thought this was the cause.  He says you generally don't see a one-sided (asymetrical) hearing loss and even with an injury the opposite ear would show some damage as well.  My left ear is 100%.  He said that I need an MRI and a specialist to examine me before he can do anything with my hearing loss.  I said that I had an ABR the year before, but he says that ABR's can miss things.  He strongly suspects an AR, since my left ear is 100% and my right ear is very poor.  It's getting worse, even over the past year.  Tinnitus started about 6 months ago and is getting LOUDER.  I also find my right eye is becoming increasingly blurry, but not all of the time.  Sounds a lot like your situation!

From what the audiologist said, an ABR may not diagnose an AN (but it could).  And yes, I think yours might have been smaller previously and is now larger.  That's what I think is happening to me.  However, it might not be an AN, either.  I've heard from 2 people in the past 2 weeks who were suspects of AN that turn out to be free of AN.  An MRI is needed to detect this.  I would insist upon it.  I'm scheduled for one on Oct. 24th.  And, I must agree with you.  This waiting is killing me.  I'd rather hear that I have an AN and then deal with it than constantly wondering "Do I have one?"  "Do I not have one?"  "Is this headache caused by pressure on my brain?"  You drive yourself CRAZY trying to second-guess what's happening!  Get an MRI booked and then you'll know.  I'm on the cancellation list and might get in earlier than the 24th, but at least I know that in 3 weeks my wait will be over.  Three weeks of hell!

You might have an AN, and you might not.  Who knows?  An MRI will tell if you do or don't.  All we can do is sit and guess.  Keep up posted.

Please feel free to email me if you wish (jwilson(at)icsgaming(dot)com)

John

[jw]

Hey, Josh.  How are you?  Do you have an MRI scheduled?

[SVTCobra]

Russ,
I think my ENT specialist was basically doing the ECOG and ABR to confirm his suspicions of a possible AN before going the MRI route.  He did tell me that an MRI would be my next step, but he just hasn't called back yet to schedule it. 

It sounds like many of us have similar stories.  I could easily live with tinnitus and hearing loss, that's the easy part.  But the vertigo and vision problems begin to bring this into light where it becomes a bit frightening.  My hearing loss is on the high side, and it basically came on gradually and has worsened over time.  I just didn't realize AN's could grow so slowly.

With that said, does anyone know of an ENT specialist in the Tulsa, OK area who specializes in AN's?

Update: I just got a call back from the nurse who said the doctor hasn't reviewed my ABR test results, but he would do it today and call me back...  it's been well over a week, geez.

[jerry.torres]

You may want to consider an MRI to rule out/confirm AN.  Discuss with your Doctor---get an opinion.  Best of luck!

Jerry

[SVTCobra]

You may want to consider an MRI to rule out/confirm AN.  Discuss with your Doctor---get an opinion.  Best of luck!

Jerry

Thanks Jerry.  Yes, my ENT guy told me that he'd send me for an MRI if my ABR came back abnormal...  I'm anxiously awaiting their call... hopefully today!

[JHager]

Hey John,

Sorry, I realized that in my last post I didn't really explain where I am on this roller coaster ride.  I've already gone through the MRI/meet the doctors/insurance approval/schedule the procedure fun.  I have a 3+cm right side AN - it's being removed via translab on November 7 here in Las Vegas.

Josh

[SVTCobra]

My doctor called back today (finally) and said he wants me to get an MRI done as soon as possible. 

I'm going in on Monday, October 10th to have it done.  They said I should know something by the middle of next week.

-Darren

[jw]

Hi, Darren.

That's good news about the MRI.  Let us know the results as soon as you hear them!  I'll be thinking about you on Monday! 

[jw]

Hi, Josh.

I just got back from Vegas a couple of weeks ago.  Had AN on my mind the entire time, though!  Can I ask you something?  Now that you know what you have and the treatment (which is still some time away), how do you find the waiting for treatment, compared to the waiting for diagnosis?  Waiting for the MRI is killing me!  But, once I know the results, I might feel differently about waiting for surgery/treatment/etc.

And to top it off, a good friend of mine at work had a few bad days.  His wife had a severe headache for several days.  She went to the hospital on Monday for a CT scan.  Shortly after she was airlifted to Toronto and underwent brain surgery to repair a broken blood vessel in her head.  She's back home now and doing well, but that was cutting it close!

[JHager]

Hey JW,

I felt that waiting for diagnosis was much worse than waiting for surgery.  There's just too many "What if" type questions when you're waiting for final diagnosis.  Plus, you know less, so there's a much greater fear of the unknown.  Once I knew what I had, what my options were, where I could go, etc., I was able to start making some informed decisions.  Now that the decisions have been made, I feel much better.  I a little impatient, but that's much better than the uncertainty.

I chalk that up to this: human beings enjoy having some semblance of control, and I didn't feel that way until I had ALL the facts.

How about you?

Josh

[SVTCobra]

My MRI was completed this morning... awaiting the results.  I guess it can take a few days?

[amoore9334]

Hi  - My husband had his MRI results the day after it was performed.  Be a pest and get them to give you the info! It's your head!  I hope you want have to wait too long - that's the worst!