Author Topic: uh...what did you say...  (Read 3775 times)

chloes mema

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uh...what did you say...
« on: November 16, 2012, 06:37:28 pm »
Had my 6 month hearing test after CK and my word comprehension in my AN ear is now only 7%! 

Wow, the doctor said I'd probably be SSD within two years but the rate my hearing is failing it'll be two months.  Strange that mine goes down in large chunks but it is what it is!

Just thought I'd share.  Oh yes, audiologist said that my hearing aid would no longer be of any use in my AN ear but I'm still using it out of habit I guess.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

arizonajack

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Re: uh...what did you say...
« Reply #1 on: November 16, 2012, 08:43:09 pm »
What was your percentage just before the CK?
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

TJ

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Re: uh...what did you say...
« Reply #2 on: November 16, 2012, 10:16:37 pm »
Karen

I am sorry to hear that you have lost that much hearing on the AN side.  Hopefully you will be a candidate for a BAHA or something like that.  I know that is very hard but try to stay positive and take care.

Tom

chloes mema

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Re: uh...what did you say...
« Reply #3 on: November 17, 2012, 06:44:35 am »
Arizonajack - it was 47% shortly before CK but I'm not real surprised it dropped so much in one short time period because that's how it's been for the past couple of years.  Matter of fact, that's what led my ENT to send me for an MRI to prove that I did have an AN.  He suspected an AN when I started losing "large chunks" of hearing about every 3 - 6 months.

TJ - thanks for the encouragement.

As a side note, this last hearing test when the audiologist was pronouncing words that I was suppose to repeat back I only got two.  I finally told her to stop the test because it was frustrating for both of us.  She was very sympathetic, told me if I were a new patient that wanted hearing aids she'd tell me not to spend the money. 

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

nicole927

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Re: uh...what did you say...
« Reply #4 on: November 18, 2012, 06:56:12 am »
I'm very glad to hear that you had a sympathetic audiologist. The audiologist I saw one time before switching completely to my ENT had poor bedside manners. It must be very difficult for you to have lost so much hearing so quickly. That's a big adjustment to cope with.
Diagnosed on April 20, 2012 at age 23 with a 3mm acoustic neuroma in the left internal auditory canal

Alan Goldberg

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Re: uh...what did you say...
« Reply #5 on: November 18, 2012, 11:00:41 am »
There are many options to support your hearing on your AN side.  New technology is coming out constantly and while it may not be natural hearing, you can begin to identify th location of a siren and hear the person walking on your deaf side.  Make sure you go to an audiologist that understands AN's and the options available.  Contact the Association for additional information. 

There are surgical and non surgical options now available.

Good luck and most importantly, don't give up.

Alan

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Caregiver for wife 2.5 cm retrosigmoid 9/2009
Bederson and Choe, Mt. Sinai, NYC
Vice President, ANA Board of Directors

chloes mema

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Re: uh...what did you say...
« Reply #6 on: November 19, 2012, 10:50:38 am »
Thank you all for the information and your support.  Lots of things to think about and consider.  I'll keep you all posted.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

leapyrtwins

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Re: uh...what did you say...
« Reply #7 on: November 20, 2012, 06:11:02 pm »
Karen -

Alan is right; lots of good options these days both surgical and non-surgical.

On the surgical side there's the BAHA - my choice and I love it but realize it's not for everyone.

On the non-surgical side there are hearing aids like the Phonak Cros, the Transear and the Sound Bite.

You don't have to be completely deaf for the BAHA and I'd imagine that's true of at least some of the other options.

Your audiologist should be aware of these options and can help you decide which one might be right for you.  She may even have some demos (typical with the BAHA and sometimes the Cros) that she can let you try.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

chloes mema

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Re: uh...what did you say...
« Reply #8 on: November 21, 2012, 06:58:17 am »
Thanks, Jan

Truthfully, I really hadn't given any thought to hearing devices but all of you that have responded have given me much to think about.  Unfortunately, I don't think my audiologist is that well versed since she basically said she wouldn't sell me a hearing aid if I were a new patient & didn't offer up any other options.  After the holidays (there's always something isn't there  :) ) I'll start doing research on my options.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back