Author Topic: Do I have one???  (Read 2812 times)

jw

  • Jr. Member
  • **
  • Posts: 94
Do I have one???
« on: September 09, 2005, 12:31:51 pm »
Hello, everyone.

I found this forum only a few minutes ago.   I may or may not belong here, but it's a good place to start.  Perhaps I should explain why I'm here?

After years of being told that I need a hearing aid (I need what?) I went to an audiologist last year for a hearing test.  It showed a profound hearing loss in my right ear.  I was refered to the hospital for an ABR to make sure that the hearing nerve was ok and that a hearing aid would help me.  All that I know was that there was 'some slight' nerve loss, but that it looked ok.  I was fitted with a hearing aid.

That's 12 months ago last week.  I've had it back in for repairs 3x (it was lost this last time) and I find that it just stops working all of a sudden, but then comes back (perhaps an hour later, perhaps a few minutes)?  Frustrated with this, I went to a second audiologist for a test.  His opinion was quite different.

First of all, he was shocked that my left ear has literally perfect hearing (I'm 41) with no hearing loss at all.  My right ear starts out ok at low frequency but very quickly and precipitously drops down to the bottom of the chart, just curling up slightly at the right.  He says that this just doesn't happen.  If it were from aging, my left ear would also show diminished hearing.  If it were from an injury (I was close to an air horn 5 years ago when it was blown & suspected this was the cause) he says that there would be SOME indication of a problem on the left ear, since it is close to the right ear.  He wonders why this strange hearing loss was never questioned. I mentioned the ABR, but he says they can miss things.  Long story short, he insist that I be referred to an ENT for an MRI before he'll do anything else with me.

He did a comprehensioin test where he read words and had me repeat them without looking at them.  My left ear was 100%, but in the right ear I couldn't understand anything he said.  For the few words I could figure out, it took me seconds to think about it and then come up with my best guess.  "Sheep?  Sleep?  Sweep?  Something ending in -eep".  Most of the words were just gibberish "gooona?  Splabinks?"

After researching this, I found out about aucoustic neuroma.  When I spoke with him yesterday he admitted that this is his suspiciion and that my hearing loss so strongly indicates it that it must be checked out. Of course, he admits that he can't make a medical diagnosis and is not a doctor, so that's why he wants a referral to a specialist.  I feel comfortable with this new audiologist.

I've had some hearing loss for years and my rt. ear rings constantly.  At times I get this 'fluttering' sound in the right ear as if someone were reaching in an tapping on my eardrum.  It usually lasts only a few minutes and I get this 'thump thump thump-thump-thump' sound occuring.  It's not all the time, but is becoming more frequent. I also notice a significant reduction in my rt. ear hearing over the past year.  I don't have any facial numbness or weakness nor any physical signs of any problems.  I'm clumsy as all heck, and constantly trip over things, fall over, etc.  I haven't thought if it's been any worse lately, but I can easily fall coming upstairs or over a shadow on the floor. I always thought I was just clumsy.  Also, I do have some fuzzy vision on my right side at times.  When I'm tired, I can't seem to focus on the words in a book through my right eye.  I thought this was just a combination of aging and perhaps using the computer too much during the day.  And perhaps it is.  Of course I realize that if you look up any dreaded rare tropical disease, everone has at least a few symptoms of that.  "Hey, I get thirsty sometimes, too!!!"  :)

Now, I'm not particularly upset about the possibility of AN.  I realize it's benign and hey, if it can be treated and removed, then it's a good thing.  I won't lose sleep over it.  My wife is just recovering from her 2nd surgery for breast cancer and had a double mastectomy last week, so I feel like "Oh, great, what NOW?", but other than that I'm not feeling like I'll die or this horrible thing has happened.  After all, I don't even know if it is an AN.  I have to wait for an ENT referral, MRI, etc.  Unfortuantely, it could be 6 months before I can get into an ENT, so I think I'm in for a long wait.

What do you think?  Of course, I'm not asking for a medical opinion, just some thoughts from people who have been through this or know something about it.  The audiologist says it could just be a vascular problem in the ear, but says there's definitely something going on inside there.  I guess I'm more of a realist and when I see the symptoms and think about past things that have happened with my hearing, I start to think "Hmm, there is a good chance this could be it".

John
Diagnosed 31 Oct 2005
Bilateral 0 cm ANs.

wanderer

  • Full Member
  • ***
  • Posts: 178
Re: Do I have one???
« Reply #1 on: September 09, 2005, 01:13:02 pm »
For a suspected AN expect to be seen within a week or two.     If it is an AN expect to be referred again to a Otologist or neurotologist.

while AN's are most often benign that is not always the case.   Also there are other conditions such as MS that can have the same sort of symptoms.    This was a concern for me as I have 4 people in my family with MS  I was almost happy that it was a tumor.

Also the size of the tumor can be a factor and if large enough can be life threatening.    For instance mine was displacing my brain stem and pushing on the area that controls breathing.   I was told waiting was not really an option but that maybe 3 or 6 months would be okay.

Not trying to worry you,  there can be a large number of reasons however from your audiology it does sound like you got the AN curve.

jw

  • Jr. Member
  • **
  • Posts: 94
Re: Do I have one???
« Reply #2 on: September 10, 2005, 10:51:42 am »

Not trying to worry you, there can be a large number of reasons however from your audiology it does sound like you got the AN curve.

That's what I had thought.  I'm not going to worry, but I will call my family Dr. and make an appointment to see him.  I'll push for the earliest date to see an ENT and see how long the waiting list for an MRI is.

Thanks for your reply.
Diagnosed 31 Oct 2005
Bilateral 0 cm ANs.

Mary

  • Jr. Member
  • **
  • Posts: 52
Re: Do I have one???
« Reply #3 on: September 11, 2005, 06:13:56 am »
I would not bother with a ENT.   Your family Dr. can schedule a MRI.   If you have AN you will be refered to a neuralogists.

matti

  • Hero Member
  • *****
  • Posts: 1234
Re: Do I have one???
« Reply #4 on: September 11, 2005, 11:28:58 am »
John - My family doctor requested my MRI and then I was referred to the Ear Institute. I think it would be quicker to go through your family doc first, have the MRI, get the diagnosis and then go from there.

I can totally relate to what is going on in your life right now. When I was experiencing my symptoms 8 years ago, my husband was in and out of the hosptial for almost a year and half, with 3 major abdominal surgeries and 8 out patient proceedures. It was a very rough time. As soon as he started to feel somewhat better, I was then diagnosed with my AN. We managed through it all with a sense of humor, and alot of patience and understanding. My thoughts and prayers are with you and your wife for a speedy recovery.

Keep us posted.

matti
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50