Scared...Should I be?

[Sue]

Hi Debbie,

A belated welcome from me also.  Believe me, "scared" is a pretty accurate description of everyone's first wave of feeling after being told what was wrong.  For some, it's relief, because it's taken so long to get a correct diagnosis and it's so good to know that what you have has a name, in this case two names: Vestibular Schwannoma or Acoustic Neuroma.  And it's benign, which is part of the relief.  But, still, nobody takes too kindly to having something growing inside their head.  

You will know soon enough what your situation is exactly, and then you can go from there.  Then you will be discussing options for taking care of the little beast, if indeed you have one.   You can "nuke" it , like I did, or you can have it surgically removed.  This depends on size of the beast, of course, and your personal preference.  Make sure that you talk to "well-qualified and highly experienced" surgeons and radiosurgery people.  This is very important.  Make sure you get a well-balanced look at all of your options.  This is very important.  

Looks like you've gotten some good support and answers already.  This is a great site for support and information.  We are glad that you found our little hideout, and if you are indeed diagnosed with an AN, you are more than welcome to visit us as often as you like.  

I didn't read everyone's posts word for word so I don't know if I'm duplicating an answer, but as far as your hearing goes, once it's been damaged, it's damaged and you won't regain whatever hearing that you have lost.  Tinnitus usually will stay with you, too.  Bummer, I know, but that's part of the AN story line, sad as that is.  Believe me, if somebody came up with a cure for tinnitus, that person would be a hero and make a fortune!  The balance issues most often resolves itself over time as your other balance nerve takes over and learns to handle all of the balancing duties on it's own.  It takes some time. There is also Vestibular Therapy available, and you might ask about that if your dizziness continues to be a problem for you.   And the healing time varies with individuals. Some people have severe balance issues and some have minor balance issues. A few have no balance issues that they are aware of, but a compromised vestibular system causes all sorts of things besides just being dizzy or having vertigo.  A really good article to read is this one that explains the workings of the balance system and the consequences of an impaired system.  I experienced some of these things long before I knew I had an AN.  I hope you read this.  

http://www.hearinglosshelp.com/articles/balancesystem.htm

Hang in there.  

Sue in Vancouver, USA

[Tumbleweed]

Hi, Debbie:

The "firing of the nerve" test your doctor is talking about is probably an ABR, or auditory brainstem response test. This is a fast, non-invasive and completely painless procedure where the amplitude of the signal transmitted along the hearing nerve --  on its way to the brainstem -- is recorded at several spots along the length of the nerve. A severely degraded test result (little or no amplitude at several locations along the nerve) is often -- but not always -- an indicator of an acoustic neuroma (a neuroma is a tumor originating on a nerve). That said, an MRI is the only definitive diagnostic tool for determining if one has an AN or not. The ABR test is far less expensive. Your doctor is trying to save you and/or your insurance company some money by doing the less expensive test first. The problem, however, is that a negative ABR test result is not conclusive. That's because many people who have an AN don't have any hearing loss.

BTW, a 10% variance in hearing ability between both your ears is a very small amount and may be due to other causes besides illness (e.g., wax buildup in one ear, a poorly fitted test set on that side, etc.).

Most cases of vertigo improve a lot within a few days and then gradually resolve over time. The exceptions are those cases involving an AN or Meniere's disease. If you are having low-frequency hearing loss, Meniere's is suspect (but not necessarily the case; it could be an AN or other condition that's causing the problem). If it's high-frequency hearing loss only, you can pretty much rule out Meniere's. Progressive high-frequency hearing loss accompanied by recurring bouts of vertigo could be caused by an AN, but possibly by something else.

The only way to know for sure what's going on is to get a brain/IAC (internal auditory canal) scan -- an MRI with contrast -- to check for an AN, an anatomical problem with the IAC (such as a split in the bony canal), and signs of any other disease such as multiple sclerosis which may be causing your problems. But again, if your hearing loss is in the high frequencies only, I would suspect an AN (on account of your recurring vertigo).

Please press your doctor to get an MRI. It's the only way you're going to get definitive answers.

Best wishes,
TW

[ScoobyDoo]

The "firing of the nerve" test your doctor is talking about is probably an ABR, or auditory brainstem response test. This is a fast, non-invasive and completely painless procedure where the amplitude of the signal transmitted along the hearing nerve --  on its way to the brainstem -- is recorded at several spots along the length of the nerve. A severely degraded test result (little or no amplitude at several locations along the nerve) is often -- but not always -- an indicator of an acoustic neuroma (a neuroma is a tumor originating on a nerve). That said, an MRI is the only definitive diagnostic tool for determining if one has an AN or not. The ABR test is far less expensive. Your doctor is trying to save you and/or your insurance company some money by doing the less expensive test first. The problem, however, is that a negative ABR test result is not conclusive. That's because many people who have an AN don't have any hearing loss.

I found a document that described a study comparing ABR, MRI and CT scan.  It talked about risks of AN and pros/cons of the various tests.  If I remember correctly, the statistics found that ABR testing found AN's only 21% of the time.  I'll see if I can find it again if anyone is interested.

[sgerrard]

I had an ABR test, and it showed that my left side hearing nerve (the AN side) had a better signal than the right one. My hearing loss on the AN side is attributed to reduced blood flow to the cochlea leading to loss of the hair cells in the cochlea. Or something like that.

I would also like to congratulate DebbieDoo and ScoobyDoo for meeting up on the forum. 

Steve

[suboo73]

Hi Debbie!  How are you today?  Hope things are going better for you each day and you can find the information you need.

Briefly about me - i followed my sister's story over the last year as she described her symptoms, went to the ENT and finally had a diagnosis after the MRI with contrast. (aka Bigsister)  Well, i had fullness in my ear, hearing loss, some ringing and 2 ENT visits locally over a 10-12 year period, with only hearing tests and docs telling me i was getting 'old' (at the age of 40!)  Fast forward to today - after my sister told me her diagnosis last Fall, i went to a major med center, let the ENT do hearing test, and then told him my sister's story AND asked for an MRI order with contrast.  He wrote it on the spot - and you can guess the rest of the story (see signature line.)  I have an AN too.
Anyway - i did want to the know the cause of my symptoms - i like facts and stats as much as possible, that's just me.  The doc told me the results over the phone and asked what i wanted to do.  I said W & W for now, see you in 6 months.  He said that would be good and made the next appointments for me.

Was i scared - in a word, yes.  Scared for me, scared for my sister.  But now that i know what i am dealing with, i can monitor it and maybe never have to do anything, (or maybe not.)  In the meantime, i am still glad i am learning what is going on and can gather the information i need for future reference.

Everyone here has been so wonderful, encouraging and supportive!  No one wants to join this AN 'club', but now that i know, i couldn't think of a better place to be!
My thoughts and prayers are with you as you continue your journey to find the answers.
Keep the faith!

Sincerely,
Sue

PS  Sounds like you have a good PCP.  No local doc picked up on my symptoms and it really used to make me mad.  Now i realize they just didn't have AN experience.

[ScoobyDoo]

I would also like to congratulate DebbieDoo and ScoobyDoo for meeting up on the forum. 

Thanks, Steve!  What are the chances that I would find my long, lost sister Debbie on here?  I think this calls for a Scooby Snack!