Possible AN?

[sardeans]

Well, I had my follow up appointment with the ENT.  My hearing is stable, however it turns out to be low frequency loss (I had thought it was high frequency loss).  The doctor wasn't as dismissive about the throbbing pains this time around, partly because it has persisted for 3 months and mostly because previously he thought it was on the other side.  When I corrected him that it was on the side of my bad ear, he seemed to take it a bit more seriously.  The worsening of the high pitched ringing tinnitus also got the wheels turning a bit.

He did another CT scan.  If that is turns out normal, then he will refer me to a TMJ specialist.  It that turns up negative, then he will evaluate the situation for possible MRI.  He claims that the insurance companies will balk if the proper course of starting out simple isn't followed.  I pressed about the ability of CT to rule out an acoustic neuroma and he agreed that MRI was the way to go, but we're not there yet.  If the follow up after the TMJ doesn't prompt the MRI, then I plan to get a second opinion.

By the way, in my research I've read about nystagmus.  Just yesterday, I noticed while on my computer that my eyes were twitching and the letters/words on the screen were darting back and forth very fast and lasted for about 15-20 seconds.  That made me recall at least a dozen times within the past year or so that has happened while reading or on the computer.  They seemed to be isolated and infrequent and therefore I don't know if that is normal in the population at large or another "symptom" to note.  I didn't mention to the doctor simply because I just now made the connection.  Does anyone have any insights to this infrequent twitching?  It seems most cases that I have read about are very frequent and disruptive, therefore I'm reluctant to add this to my list.

Also, I've read conflicting research that low frequency hearing loss is either uncommon for AN or that it accounts for as much as 1/3 of AN's.  Further, AN's that result in low frequency loss affect nerves that aren't affected by ABR stimulus.  Therefore, my negative ABR could be explained by the low frequency loss (assuming I turn out to have one). 

Anyways, I will have to wait for clarity and just hope that the ENT doesn't call me into the office regarding the CT result (that likely wouldn't be a good sign).

[leapyrtwins]

sardeans -

you may or may not have an AN, but the best way to find out is to have a diagnostic MRI with gadolinium contrast.

If it were me, I'd ask for that before I went through any more testing.  Lots of people who have ANs are misdiagnosed for a very long time when a simple MRI would give them the answer they seek.

Good luck,

Jan

[Jim Scott]

Sardeans ~

I heartily agree with Jan.  An MRI shortcuts all these tests that may come to nothing.  My Primary Care Doctor ordered an MRI for me based on his assumption that I had a 'sinus problem' (I didn't).  The insurance company didn't balk at my doctor ordering an MRI scan.  The MRI results showed a large AN (too big for radiation).  I found a neurosurgeon and had my removal surgery within less than 4 weeks of my diagnosis.  Again, no problem with the medical insurance (Blue Cross).   If the MRI shows nothing, these tests you're contemplating may well be of some value but if it shows an AN, the tests will have been unnecessary and wasted time.  I would definitely push for an MRI, first, to rule out a tumor. 

Jim

[suboo73]

Sardeans,  Hi again. 
Yes, i heartily agree with JIM & JAN.  My earlier audiograms were inconclusive and the first two ENTs did not recognize my symptoms. 
When i went to the third ENT, where they even treat ANs, my audiogram was still inconclusive.  But, when i asked, he had no problem writing the script for the MRI and my insurance covered it.  I had my answer in less than a week, after retrieving the MRI report myself directly from the facility.

I was very angry for a long time at the first two docs.  But, the reality is they just didn't put two and two together to suspect an AN.
I am also thinking they didn't see many patients with ANs, so they just didn't know.
I am very grateful for the third ENT believing in me and ordering the MRI to rule out a possible AN. 

It took my sister about 6 weeks to have an answer.  It took me over 12 years - go figure.

My thoughts and prayers continue for you and your extended family.

Sincerely,
Sue

[moe]

Sardeans~
I agree with JIM, JAN and SUE!!!
I also understand that you and the doctor are stuck in the middle with the insurance issue. There is is that  politics aspect  in health care management/insurance companies. (hate to see what the future may hold in that category but we won't go there )
Doctors may get "brownie points" when  ordering  the less expensive tests vs. expensive tests. IMO he could get the MRI if he really wanted to.
You are well "armed" and won't settle for less! Just may take a little longer.
Good luck- keep fighting!
Maureen

[sardeans]

I certainly intend to stay on top of the situation and see things through.  I will be patient to an extent, however if he doesn't think an MRI is necessary if the TMJ angle doesn't pan out, then I intend to insist or seek a 2nd opinion.  I am too well informed at this point to ignore the potential severity of my symptoms.  Thanks again.

[suboo73]

I certainly intend to stay on top of the situation and see things through.  I will be patient to an extent, however if he doesn't think an MRI is necessary if the TMJ angle doesn't pan out, then I intend to insist or seek a 2nd opinion.  I am too well informed at this point to ignore the potential severity of my symptoms.  Thanks again.

Sardeans, 

So glad that you ARE staying on top of the situation - WONDERFUL!
If i came on a little forceful about the MRI, it is only because i do not want someone's symptoms to get so bad that they suffer needlessly.
I am one of the fortunate ones with minimal symptoms at this point = and maybe Watch & Wait will work for me.  But i am sure glad i know what i am up against.

My best wishes on your journey to find out the true answers, and relief from your symptoms.
Keep us posted - we are here for you!

Sincerely,
Sue

[sardeans]

Just a quick update that I have an MRI scheduled for Wednesday morning.  Originally, the ENT wanted to rule out TMJ first.  However, as my insurance doesn't cover TMJ unless there is a "congenital anomaly" (I couldn't get a straight answer for a definition), they decided to go ahead and proceed with MRI.  I confirmed that the order is for an MRI of the brain with a focus on the IAC and that it will be with contrast.  A close friend is a radiologist for the group that covers the facility where I am scheduled.  He is going to be sure that a radio-neurologist reads the image rather than a generalist.  Not that it takes a neurologist to see AN, but if I don't have AN, then hopefully that will be the most qualified specialist to see anything else that could be the cause of my symptoms.  If nothing else, then I will sleep a little better at night.  I'll keep posted with any developments, but as they say regarding MRI's of the brain... "No news is good news".

[ppearl214]

Hi sardeans and sounds like things are falling into place for you. To rule out (hopefully) the possibility of the AN, you are doing everything right... MRI with contrast really will give you answers... and heck, send me the films. I know how to read them!   Had mine done yesterday (yep, a Sunday!) and read my films when I got home (my radiation follow up is this Thursday)... and trust me, I know what I saw for me and here's hoping your's is a "negative read".

good luck and please keep us updated.
Phyl

[suboo73]

Hi sardeans and sounds like things are falling into place for you. To rule out (hopefully) the possibility of the AN, you are doing everything right... MRI with contrast really will give you answers... and heck, send me the films. I know how to read them!   Had mine done yesterday (yep, a Sunday!) and read my films when I got home (my radiation follow up is this Thursday)... and trust me, I know what I saw for me and here's hoping your's is a "negative read".

good luck and please keep us updated.  Phyl 

Sardeans,

Ditto what Phyl said (except i am not very good with reading MRIs...!)
Sounds like you will be getting some answers soon, and great to hear that the radio-neurologist will read the films!
(I don't even know if i generalist read my first MRI - hhhmmmmmmm- but they did recognize the AN regardless, even after 12+ years misdiagnosis.)

Best wishes for an uneventful trip thru the TOG (Tube o' Gloom) and keep us posted when you can.
Sincerely,
Sue

[GRACE1]

Good luck with everything tomorrow.

Grace

[moe]

Congrats on getting that MRI appointment! Tomorrow is the day.
Enjoy your nap in the TOG.
Maureen

[leapyrtwins]

Sardeans -

looking forward to an update.

Jan

[sardeans]

Had the MRI this morning.  I felt like I was in The Swan (for any fellow "Lost" fanatics).  My friend who is the radiologist called within an hour to tell me the IAC looked normal, so no AN!  The radio-neurologist looked briefly and confirmed.  I believe this was based on a quick look, therefore, I presume he still needs to read the entire scan to rule out any other neurological issues.  This is a big relief, although I unfortunately don't have answers to what is causing the symptoms.  Thankfully, they are tolerable and I can sleep well knowing what is not causing them.  Perhaps I'll explore the TMJ angle further, but for now I am content to see how things progress and take whatever course of action the ENT recommends.  Thanks to all for your input and support.  I wish you all the best in your AN journeys and hope for good outcomes.

Cheers.

[tenai98]

Good to hear that it isnt an AN...Now to find out why you are having theses symptons...good luck
JO