Author Topic: SSD...Where is that noise coming from?  (Read 19290 times)

Jwh

  • Full Member
  • ***
  • Posts: 224
SSD...Where is that noise coming from?
« on: April 12, 2011, 06:55:00 pm »
Ok....How many of you who have single sided deafness can tell what direction a sound/noise is coming from?  I CaN't!  It drives me crazy I run in the opposite direction and basically run in circles looking for the phone ringing or the person calling for me...GRRRR.  I'll never get use to that.
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

Tod

  • Hero Member
  • *****
  • Posts: 661
    • My blog (work and life)
Re: SSD...Where is that noise coming from?
« Reply #1 on: April 12, 2011, 08:07:50 pm »
You learn to turn slowly around and look. My former boss and one of my board members have been SSD since childhood and are in their 60s and 50s...they still have a problem.

Embrace the confusion...

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

opp2

  • Sr. Member
  • ****
  • Posts: 491
Re: SSD...Where is that noise coming from?
« Reply #2 on: April 13, 2011, 07:49:44 am »
Bhahahah...Tod. Love that. Can I use it??? I am a police officer and you can imagine the concern my bosses have. I can not locate sound direction, unless it's right beside my good ear, then it doesn't matter because it's pretty darn obvious ain't it?

We do learn to look around slowly. Don't try using the panic alarm in your car to find it (been there, looked pretty silly when the car was one row over hidden by an SUV) mark down the pole and row number, good luck with the cordless phone finder, you might get to the right room, but unless it's dark and the phone lights up, you're still lifting pillows and looking under furniture..I could go on, but yes...that is our sad reality.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Tod

  • Hero Member
  • *****
  • Posts: 661
    • My blog (work and life)
Re: SSD...Where is that noise coming from?
« Reply #3 on: April 13, 2011, 10:18:33 am »
I'm still holding out hope that I can develop some directionality with my BAHA. There is a different "color" to the sound, and if I can learn to pick up on that, I think it will help.

Oh, and use away....

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

kenneth_k

  • Guest
Re: SSD...Where is that noise coming from?
« Reply #4 on: April 13, 2011, 10:26:15 am »
Sometimes it is quite funny to play hide and seek with the kids ;)

Seriously, other times it is quite frustrating/dangerous. A couple of months ago I was inches (centimeters in the metric system) from getting run over by a motorcycle because I looked in the wrong direction due to SSD. Pretty scary.

Kenneth

lauralynn

  • Full Member
  • ***
  • Posts: 138
Re: SSD...Where is that noise coming from?
« Reply #5 on: April 13, 2011, 10:41:04 am »
Yes, I can totally relate to you Jwh!   I have to rely on my kids alot to tell me what a noise is or where it came from.  The tv will be on and I will hear a phone and I'll say, "Is that our phone?"  Or my cell will be ringing and I will have no idea where it is... to find out it was right next to me!  One night I was laying in bed and I heard a noise and of course could not tell what it was or where it was coming from.  It was my kids weekend to go to their Dad's so I was scared!  I finally had to get up and see what it was....clothes in the dryer...ugh!  Sirens when I'm driving...never know what direction they are coming from.  Does anyone with a BAHA notice it helping at all with knowing where sound is coming from?  I have been considering it...still not sure but we'll see.

God Bless,

Laura Lynn
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: SSD...Where is that noise coming from?
« Reply #6 on: April 13, 2011, 11:42:48 am »
Like Tod, I am hoping that my brain will eventually adjust to differentiating whether the input is from the BAHA processor or my good ear, which would give a degree of directionality, I would think.  I will not have mine for several months so Tod or others will have to tell us if this indeed happened to them.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

JerseyGirl2

  • Hero Member
  • *****
  • Posts: 513
Re: SSD...Where is that noise coming from?
« Reply #7 on: April 13, 2011, 11:48:53 am »
Laura Lynn,

I attended an AN symposium a couple of years ago at which a doctor said that he makes sure his patients know two things before they "sign up" to get a BAHA: (1) their level of tinnitus will not be changed (i.e., a BAHA will neither make tinnitus "better" nor "worse") and (2) the BAHA will not restore directionality (he subscribed to the theory that the brain permanently loses its ability to distinguish directionality shortly -- perhaps in as little time as a few weeks -- after the onset of single-side deafness). A couple of BAHA wearers on this forum have felt that they've regained some measure of directionality with their BAHAs, so perhaps they'll comment here. But I imagine they would agree that it's not something you should confidently assume will happen.

Catherine (JerseyGirl2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Tod

  • Hero Member
  • *****
  • Posts: 661
    • My blog (work and life)
Re: SSD...Where is that noise coming from?
« Reply #8 on: April 13, 2011, 01:25:53 pm »
I *think* and this is very early on, any ability to regain any level of directionality is going to depend on the quality of the sound, the user's ability to differentiate and recognize sound coming through the processor, and the volume settings of the processor.

I think it will also take a fair amount of intentionality on the part of the user to find distinctions. I'm likely to end up being very wrong, but we'll see.

As far as BAHA not affecting levels of tinnitus, my doc thinks otherwise and I am part of a study group for that issue. We'll see what happens. however, i did write in large letters on the surveys "ASKING ME TO RESPOND TO A QUESTIONNAIRE ON TINNITUS JUST MAKES IT WORSE."

But, tinnitus does drown out the voices. ;-)

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

HeadCase2

  • Hero Member
  • *****
  • Posts: 778
  • Carpe Grog
Re: SSD...Where is that noise coming from?
« Reply #9 on: April 13, 2011, 01:27:07 pm »
  I think the longer you have SSD, the more your brain tries to compensate for directionality with the small clues that your one sided hearing gives you.  For example, if you shut your eyes and turn around in a room, you can tell what direction the TV is in, since it's louder when you face that direction.  There are also subtle differences in the treble sounds vs. bass sounds.  If the sound comes from the non-hearing side, the higher frequencies seem to be absorbed more than the bass frequencies by having your head in the way.  It's not like true stereo hearing,  but it helps.  With that said, I find that fairly often I can be fooled into thinking I know what general direction some sound comes from, and be completely wrong.   ;)

Regards,
  Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

mattsmum

  • Full Member
  • ***
  • Posts: 101
Re: SSD...Where is that noise coming from?
« Reply #10 on: April 13, 2011, 01:44:53 pm »
i am not SSD - i have some hearing left; but not enought to give me directionality. when i hear my hubby's voice and say 'where are you' cos i cant tell... he helpfully says 'here'!!  grrr.

vikki
LINAC radiosurgery july 2011 for 1.5cm tumour (uk)

Jwh

  • Full Member
  • ***
  • Posts: 224
Re: SSD...Where is that noise coming from?
« Reply #11 on: April 13, 2011, 05:21:04 pm »
Sniffle....sniffle....Yup that is me crying from frustration.

Yes my husband will call me from another part of the house and I get frustrated with him.  I'm like where are you and he says right here!  Well gee thanks that helps a lot!  I've heard my kids calling for me and I go running behind the couch and they are clearly across the other side of the run.  I think they actually get a kick out of that.  The phone oh forget it...If I don't have my kids around I can never find it.

I almost always look the opposite way of the correct direction of the noise.  Plus my good ear has tinnitus and is clicking (mostly when I'm tense).  Oh wait yes I have otorsclerosis in it.  Yeah! 

Sorry for the self pity talk but I'm having one of those weeks!!!

Thanks for all of your responses.  It's soooo nice to have a forum where people actually understand what you're talking about!  It makes things better :)
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: SSD...Where is that noise coming from?
« Reply #12 on: April 13, 2011, 10:46:48 pm »
Ah yes, the SSD spin.  I know it well.

I have done much less spinning since I had the BAHA implant, although docs and audiologists will tell you that BAHAs rarely help with directionality.  I am one who thinks I have gained directionality, but it may all be in my mind; wishful thinking  ::)

As for tinnitus, the BAHA has absolutely no effect on it.  A BAHA implant will not increase, decrease, stop tinnitus or cause it to start. 

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

Jwh

  • Full Member
  • ***
  • Posts: 224
Re: SSD...Where is that noise coming from?
« Reply #13 on: April 14, 2011, 10:00:55 am »
Did some research on SSD last night.  It's a true disability to many people suffer from.  People laugh at me when I say it's a disability but they have no clue what we go through on a daily basis.  Loud environments are nearly impossible for me. I always have to angle my head with the good ear facing conversation.  I miss tons though.
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

kenneth_k

  • Guest
Re: SSD...Where is that noise coming from?
« Reply #14 on: April 14, 2011, 10:24:31 am »
« Last Edit: April 14, 2011, 11:14:10 am by kenneth_k »