Author Topic: SSD...Where is that noise coming from?  (Read 19289 times)

Sue

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Re: SSD...Where is that noise coming from?
« Reply #15 on: April 14, 2011, 10:43:26 am »
Wow, that guy nailed it!!   Great article on SSD.  Thanks for sharing this.

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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lauralynn

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Re: SSD...Where is that noise coming from?
« Reply #16 on: April 14, 2011, 10:56:33 am »
Thanks Ken,

I just read it.  I can totally relate to what that person goes through in a day.  It's amazing how SSD effects practically everything we do. 

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

JerseyGirl2

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Re: SSD...Where is that noise coming from?
« Reply #17 on: April 14, 2011, 12:20:47 pm »
Thanks for sharing the article, Ken. Wow -- I couldn't agree more!

Catherine (JerseyGirl 2)
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

CHD63

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Re: SSD...Where is that noise coming from?
« Reply #18 on: April 14, 2011, 01:02:49 pm »
Ken .....

Excellent essay.  Saving the link to send to selected friends who would appreciate the non-threatening description of the situation for SSD people.  Thanks.

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

Jim Scott

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Re: SSD...Where is that noise coming from?
« Reply #19 on: April 14, 2011, 02:30:53 pm »
Kenneth ~

I just finished reading the essay on being SSD and thought it was completely accurate.  I could have written it myself, except that, frankly,I don't find being SSD quite as frustrating as the author. However, I didn't become SSD until my late 50's.  I'm grateful for having excellent bilateral hearing for most of my life, unlike Ray Gillies-Jones (the author of the SSD article).  I usually describe my SSD as being an impediment, not a handicap.  However, the SSD experience is always going to be subjective, even though people who are SSD share common problems.  How we deal with them (partially controlled by our lifestyle) will always be a factor in how we view our SSD.  Judging from previous posts, many members found the SSD article informative, as did I.  Thanks for posting it.

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.

Jwh

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Re: SSD...Where is that noise coming from?
« Reply #20 on: April 14, 2011, 07:51:40 pm »
Ken,
Thanks so much for posting that article.  I just put it on Facebook so people can understand what my day feels like.  I also made my husband read it...It's an eye opener!
Thanks!
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)

chocolatetruffle

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Re: SSD...Where is that noise coming from?
« Reply #21 on: April 14, 2011, 11:16:55 pm »
thanks for the article and the website - wow, that is exactly how i feel!!!
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

rayden1

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Re: SSD...Where is that noise coming from?
« Reply #22 on: April 15, 2011, 02:33:31 pm »
Hi

Have no clue what direction noise is coming from. Have learned to live in state of daze and confusion. Have no tinnittus since surgery - the only plus factor.

Ann x

JAndrews

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Re: SSD...Where is that noise coming from?
« Reply #23 on: April 16, 2011, 05:51:16 pm »
Yes, I know how you feel. It never gets any better! Transear was a waste of money and time. But most people approach me face to face..it took a long time to get people to do that:)
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

Denise S

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Re: SSD...Where is that noise coming from?
« Reply #24 on: April 16, 2011, 06:10:03 pm »
Hah, seems like I remember once reading a topic on here that was more on the 'funny' side of SSD.  It was people just sharing some stories that may 'sound' a bit funny, but where only those of us in the same condition would understand.   Anyone else remember those posts??

I happen to hear a woodpecker going crazy the other day.  So I stepped outside to try and see where it was coming from.  I swear I was walking around like a lost alien looking up for my home in the sky, but couldn't figure it out.  I was walking round & round on our property.  I could hear it, but I think it was up high in a tree and that made it even worse for me.    A week before that my dog took off.   I could here his tags clanging around in the woods, somewhere, but couldn't figure out where.   Didn't even have a clue which way to head to start looking for him.   Luckily my hubby was pulling in and was able to find the dog right away (I honestly was looking in the wrong direction) Grr.

NOW, as for tinnitus & the BAHA.  Well, I posted on facebook about a year ago and got replies where for a few it DID help!!   I asked after being told BY a Cochlear Rep (when I was trying to get a BAHA, but insurance keeps denying) that YES a few have commented that a BAHA does help with their tinnitus.    Also, like said in a post above there is currently a new study for those in regards to tinnitus and BAHA use.      I wish I could speak from experience of my own, but no luck (darn insurance!!)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Jwh

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Re: SSD...Where is that noise coming from?
« Reply #25 on: April 17, 2011, 06:34:48 am »
Went to a bday party last night.  Missed tons of conversation.  Probably said "what" or "pardon" over a dozen times.  Such the life we live.
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)

mattsmum

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Re: SSD...Where is that noise coming from?
« Reply #26 on: April 17, 2011, 06:40:12 am »
only a dozen - that would be a result!

best wishes,

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

Rivergirl

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Re: SSD...Where is that noise coming from?
« Reply #27 on: April 17, 2011, 06:47:13 pm »
Figuring out what direction noise comes from is so frustrating but also trying to figure out in the first few seconds what the noise is, sometimes I get a moment of fear with this, guess I am still getting used to it.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

jcc1138

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Re: SSD...Where is that noise coming from?
« Reply #28 on: April 17, 2011, 06:57:10 pm »
I had SSD for about 6 months to 1 year prior to discovering the AN. I got a BP-100 (upgraded to the Baha 3, which is basically a BP100 with bigger buttons and a plastic flap over the microphones and the battery) in February of 2010 and I have found that I can tell the difference between the regular ear (left) and the right side by catching the slight time delay in the sound. I will say that the BAHA is pretty bad in noisy situations, since it will grab the sound that is loudest and transmit that into the ear (I have also noticed in concerts and bars that the BAHA will clip the sounds when I close my left ear to hear out of the right ear). It is designed to emphasize voice over all else, so some musical notes get lost (and some cause it to go into a squeal for a second).

Jim

cobbler

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Re: SSD...Where is that noise coming from?
« Reply #29 on: April 18, 2011, 09:26:53 pm »
I am still fairly new with my BAHA - I have only had it for a month so I am still adjusting. I am currently finding that my direction is really off. The BAHA gives you almost a microphone sound and I have no clue where it is coming from. And since I can hear more with the BAHA sometimes it can be overwhelming. I am adjusting but I still think the ability to hear will out weight the need for direction. I think that will be something that I just get used to over time.

 ;)
Misty Cobb