Author Topic: New user - undiagnosed AN  (Read 3704 times)

kellyaus

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New user - undiagnosed AN
« on: July 30, 2016, 10:22:37 pm »
Hello,
I am new to this forum - based in Australia, 33 y/o female. I have an upcoming appointment for MRI & ENT specialising in neuro patients. This was mainly because I have NF1. Never been an issue in my life.
I have had hearing loss in my right ear for a number of months which I passed off as glue ear. After months of "putting up with it" - I went to Dr who prescribed a nasal spray & gave me a few techniques to clear it up - was thinking Eustachian tube dysfunction.
After a month of no change, another Dr prescribed anti-biotics and gave referral for hearing test. Hearing test done & report stated "a mild sloping to severe hearing loss present". Not sure how to attach the hearing test results here?
Since then, another Dr visit review report and this time a referral to ENT. Upon receiving my referral the actual ENT Dr rang me to inform me he was passing on my referral to a specialist ENT who deals more with neuro patients due to my NF1. I rang their clinic to book apt - none until mid Sept. I questioned if I would need an MRI as the previous ENT suggested I may need one - their reply was that the consulting ENT would need to assess this themselves, fair enough.
Then a random phone call the next day from their office saying they can see me in a weeks time. OMG! And I would need the MRI.
I live 700kms (434 miles) from the specialist so a lot to organise with kids/school/work.
I have been reading a fair few posts regarding other symptoms of AN and although I have told each Dr I have seen that I have had no dizziness etc - I am now questioning all of that. Putting it down to being "clumsy" etc. I have had bouts of blurry vision/dizziness where I have sometimes felt I need to close my eyes & hold onto something. This passes after a minute or so. I have always put this down to stress/dehydrated/tiredness. This has been happening over a few years, although hard to know exactly as I would have never associated with it with AN (no reason to until now with loss of hearing).
So that's my history crammed into a few short paragraphs. Trying not to feel anxious about the upcoming appointment(s), what will be will be.
Would appreciate any other advice or suggestions, mainly with the other symptoms as I am still not convinced they are related!


v357139

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Re: New user - undiagnosed AN
« Reply #1 on: August 01, 2016, 06:02:40 pm »
Kellyaus,
There is just no way to know about AN unless there is an MRI.  You can drive yourself crazy trying to guess. Those other symptoms might be related and might not. Best to keep busy and keep your mind on other things as best you can.  Focus on being grateful that something opened up for you.  The date will come and you'll get your answer.  Best of luck and keep us posted.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

arizonajack

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Re: New user - undiagnosed AN
« Reply #2 on: August 05, 2016, 09:35:57 pm »
I agree with Rich that you should try to put your worries aside until you get the results of the MRI (make sure it's with contrast).

As for:

Quote
Hearing test done & report stated "a mild sloping to severe hearing loss present". Not sure how to attach the hearing test results here?

This site doesn't facilitate uploading an image from your computer. You'll have to scan the image to something like photobucket and then post a link here.

However, those of us who routinely keep track of our audiograms can probably visualize yours.

The results of an audio gram can also be written out as follows:

Frequency 250 500 1000 1500 2000 3000 4000 6000 8000
Decibels.....15...35....35.....50.....60....55....65....65.....70

Those are my figures from my last audiogram. That's my good ear. My AN ear flatlines across the bottom of the graph.

When graphed the figures make a jagged sloped line from the upper left downward to the right which, like most people, means a lost of hearing in the higher frequencies.

For a better understanding of what's happening to your hearing read the following article "Introduction to the Audiogram."

http://www.hdhearing.com/learning/part2.htm

If that's not TMI for you, you can read the other half of the Guide to Hearing Loss:

http://www.hdhearing.com/learning/part1.htm

« Last Edit: August 05, 2016, 09:41:29 pm by arizonajack »
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

Blw

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Re: New user - undiagnosed AN
« Reply #3 on: August 05, 2016, 09:55:35 pm »
If it is that hard to get the MRI due to travel or delay, I would insist on them ruling out an AN and ask for the contrast. It would be a shame if they left it out then determined MRI was inconclusive.