Author Topic: Preparing for single sided deafness.  (Read 16105 times)

Angela

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Re: Preparing for single sided deafness.
« Reply #15 on: January 17, 2011, 04:45:41 pm »
I've had SSD for 6 yrs now and nothing could've prepared me!  The best advice I got was to get used to being deaf before deciding on a hearing aid.

The abrupt [literally overnight] loss of hearing was difficult by itself, further complicated by incessant tinnitus.  Zero hearing on 1 side is bad enough but dealing with the noise in my head is a nuisance.  The "frequency" of the noise changes, almost like a bad speaker on AM radio.

I rarely use my hearing aid and when I do, it's for directionality not word discrimination.  For example, I wear it while walking the dog so I can hear oncoming cars but I don't bother wearing it during a phone conversation.

Prepare yourself and those closest to you
- you will not hear many things directed at you
- others should speak while directly facing you, i.e. not while walking out of the room
- minimize background noise, i.e. stove fan, running water, fridge hum, radio, TV, etc

Good luck! 
ongoing issues: SSD, some facial paralysis, dry eye, bad balance, tinnitus

Feb'05 Stanford- 4cm x 3 x 3 "Timmy the Big Fat Tumor" removed via 13hr Trans Lab
Nov'07 Stanford- 2hr nerve graft
Mar'08 FACE STARTED MOVING, PRAISE GOD!Sep'10 Stanford- cyberknife for 2nd tumor "tiny tommy"
Mar'12 :)

Ross

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Re: Preparing for single sided deafness.
« Reply #16 on: January 18, 2011, 07:56:52 pm »
I hadn't been on the discussion boards for quite a while, but of late, I've been feeling quite sad about my SSD.  It's been 18 months since I lost my hearing in my right ear.  At first, I felt like a trooper.  I was amazed at how well I adjusted.  I remember sitting down at the piano two days after losing my hearing.  It was truly shocking...I just cried...but I eventually rallied and I'm back at playing pretty regularly.

On another positive note, going to the theatre is still great.  I remember sitting in the theatre during Jersey Boys with tears feeling so grateful that I could still take in the whole experience.  It wasn't the same as before, but it was still pretty darn good.

That said, I've been finding my social interactions to be harder and harder.  My restaurant experience is challenging, large work gatherings are challenging, and even small family gatherings where there are many conversations at once are challenging.  I know that I'm missing a bunch of stuff, and it just bothers me.  My head can only turn so many ways to pick up the sound and it's just hard.  After a while, my head just fills up with noise and I want to run for cover.

From reading about the BAHA and even Soundbite, I'm realizing that while those solutions may help in quieter settings, life in the noisy fastlane is going to remain forever a challenge.

So, I don't think there is really anyway to prepare for the change.  I suspect you may be as shocked as much as I was and you may simply need to keep telling yourself that it's better than having cancer, better than losing your legs and all those other comparisons we make to allow us to take comfort.  That said, some days it just feels good to be pissed...and that is okay, too. :-)
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

dianehen

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Re: Preparing for single sided deafness.
« Reply #17 on: January 18, 2011, 09:06:26 pm »
Hi Rjozer,

I just joined this group and wanted to let you know that all of those things you feel about your SSD, I have felt for the last 16+ years when I suddenly lost my hearing in my left ear.  Having evaluated the BAHA a few months ago, I can tell you that it really helped me in both the quieter settings and the fast lane, too.  I had become accustomed to either declining an invite to a loud club/restaurant or deciding to go there knowing that I'd never be able to participate in the conversations!   With the BAHA tester, I was truly amazed at how much easier it was to hear ... so I took the plunge last week and had the surgery.  I have no idea if it will trun out to be my answer but I can't just sit here and never try and always wonder "what if".   Nothing will ever give us back what we know to be normal hearing ... but I would sure like to have more than what I have now.

There is no pressure for you to get the BAHA now.  If and when you are ready,  you will know.

All these years later, and I still grieve the lost of 1/2 of my hearing ... so many things I might have done ... and hoping I will now be able to do.

All the best,
Diane

leapyrtwins

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Re: Preparing for single sided deafness.
« Reply #18 on: January 18, 2011, 09:08:43 pm »
jrozer -

Just my experience, but being SSD depressed the hell out of me  :'(  Made me feel extremely old also - I was only 45 1/2 at the time.

The day I tried the BAHA demo is a red-letter day in my life.  The day my insurance company finally approved my BAHA implant I felt like I had won the lottery.  My BAHA Gotcha Day will go down in history as one of THE best days of my life.

This is just my personal experience, but if you find that SSD is making you miserable, check into options like the BAHA or the TransEar.  IMO, they make a world of difference.

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

catlover

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  • 13 days post-op. I still have my smile!
Re: Preparing for single sided deafness.
« Reply #19 on: January 19, 2011, 02:18:37 pm »
Hello Helena,
I don't think you'll have any problems at all with SSD. I did my retrosigmoid in May 2009 and I had full hearing on my ear before the surgery and after I realized that I was in "the SSD-club", but I have less problems with SSD than I thought from the beginning. I work as at teacher and I have 25 pupils in my classroom the whole day long and it is no problems at all! The only thing that I have problems with is to hear from which direction the sound is coming, but it is not a big problem at all! I think you'll do just fine!

The best from Helene in Sweden  :)
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK

Ross

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Re: Preparing for single sided deafness.
« Reply #20 on: January 19, 2011, 04:23:36 pm »
Helena, I appreciate your optimism. What I have learned from reading everyones' posts is that everyone has their own experience. And like someone else said, it's difficult to prepare.  Until you're in it, you just don't know.  I was saying to my husband this morning..."thank g-d I don't make my livelihood having to wine and dine clients in restaurants!" Can you imagine!?!  Just torture!  Best advice...be brave, seek support, and let yourself have that cry when you need it. And then smile on those occasions when life is just easy...those are the best moments.
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009