Author Topic: Well it's official...I'm deaf.  (Read 5746 times)

Patch

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Re: Well it's official...I'm deaf.
« Reply #15 on: April 14, 2009, 12:23:14 pm »
Did you have radiation? Did you have hearing at the time of your treatment and how long before you loss total hearing ? Sorry for so many questions.

Patch
Radiation 7/07 for 17mm AN, Had my 2 year MRI 07/09, An now 13mm.

ppearl214

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Re: Well it's official...I'm deaf.
« Reply #16 on: April 14, 2009, 01:22:59 pm »
Patch,

I believe Bob/Stoneaxe had proton radiation therapy at Mass Gen Hospital in Boston

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

NancyMc

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Re: Well it's official...I'm deaf.
« Reply #17 on: April 14, 2009, 01:36:37 pm »
Yes, Samantha, that makes sense.  It is a very big adjustment.  I just try to be aware of my surroundings more than most people have to be.  It means a lot more running and looking around to figure out where a sound is coming from.  Mine has been gradual enough that it has not been a huge shock.  If somebody else happens to have a problem with my social ineptitude, well, that's their problem, isn't it.  I just smile and say, "I'm sorry, I'm deaf in my right ear."  They cannot relate to that circumstance, and I don't expect them to.  You don't understand it unless you experience it.  When my kids were in middle school there was a program that brought disabled folks into the school and put the kids in their "shoes".  It was extremely beneficial to their awareness of those with need for considerations beyond their own awareness.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Jim Scott

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Re: Well it's official...I'm deaf.
« Reply #18 on: April 14, 2009, 03:21:42 pm »
Bob:

Like everyone else here, I'm sorry to learn of your being pronounced 'officially' deaf in one ear.  It stinks but, believe me, it is manageable.

Due to my undiscovered AN, the ability to hear in my left ear went slowly over a five or six-year period so in a weird way, I was 'lucky' because I had plenty of time to adjust to the loss (I never had it checked out, assumed it was work and/or age related).  As Jan noted, I'm one of the folks that opted to forgo a BAHA or any other hearing aid.  As a person who reflexively copes when a problem arises, I just adapted to my hearing deficit by positioning myself and doing whatever was necessary to make the most of what hearing I had.  Fortunately, my hearing in my 'good' ear is acute and that helps, but of course, I still miss things, have to say "what?" fairly often and in social situations I often have to rely on my wife to repeat things I missed,.  On my own, I either ask people to repeat themselves (explaining I'm SSD) or, like our new 'postie', Nancy McDonald, I just smile and nod, sometimes inappropriately.  Oh, well.  I can assure you that being SSD is both surmountable and, eventually, isn't the trauma it seems at first.  Of course, the BAHA is always an option.  Those who use them are almost always elated with the results.  I may go that route some day but for the present, I'm doing O.K. with my one good ear and don't feel especially deprived, although I would love to have even a little hearing in my non-functioning ear. 

To sum up, I find being SSD to be more of a nuisance than a disability.  I trust you'll find a way to deal with your SSD that works for you.

Jim  
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

cindyj

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Re: Well it's official...I'm deaf.
« Reply #19 on: April 14, 2009, 03:23:31 pm »
I also just smile and nod in loud social situations.  If I feel it was something that I really needed to hear, I simply ask them to repeat it...rarely, if ever, do I even mention the SSD to new people I meet

The other day, I moved to the other side of a friend who knows I'm SSD, so that I could hear her better.  She immediately apologized to me, but I think it is MY responsibility to adjust so that I can hear, not hers to remember about me...heck, my husband can't even keep it straight :D  In fact, it has really been quite a source of amusement for us - yes, we're possibly a bit weird ;)  My hearing was very nearly perfect prior to the surgery in Nov, but it has not been much of an issue at all for me.  Yes, it is different, wouldn't choose it, but in the big scheme of things...

I did have a moment recently when I was driving and heard a train, but had no idea, of course, where it was coming from - was a bit unnerving ???

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

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lori67

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Re: Well it's official...I'm deaf.
« Reply #20 on: April 14, 2009, 08:10:33 pm »
Stoneaxe,

  You're in good company - even if we can't always hear each other!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Keri

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Re: Well it's official...I'm deaf.
« Reply #21 on: April 19, 2009, 08:27:05 pm »
Hi Bob and 'the Boss',

It was so nice to meet you all today at the lunch!
I knew for sure I was SSD (translab) but thought at times that it sure seemed like I could hear some sounds from my deaf ear. I did what JB did, I put my ipod earphone in and heard nothing! Plus, like Nancy said, I wish I could read lips in a pub like setting. Today at the brunch was very interesting. It must have been quite the challenge for all the SSD people - it sure was for me. I found it fascinating to sit there and try to figure out where a voice was coming from. I had Phyl on my left (my deaf side) and Laura on my right. Even though Phyl can be very emphatic!!, I heard more clearly just these random voices coming from who knows where? It was kind of weird. At least everyone was so patient with each other and their hearing deficits!
When I was at my hotel last night, I called the front desk for a wake up call. I had the phone on my left (bad) ear (I really don't know why - hadn't done that before). I kept waiting for the dial tone and wondered why the phone was dead. Then duh, finally I figured it out. But it's always still a shock! I mean, sometimes it DOES seem like there's hearing on the bad side.

Again, it was nice meeting you!
Keri




1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!