Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 195107 times)

grega

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #30 on: October 21, 2009, 07:54:59 am »
Way to go Gloria, in getting things moving quickly!  I'm ditto-ing Lori's and Jan's (what a punster)comments on hearing what you think.  Please also ask if any east coast locations might be in that company's plans for SoundBite trials.

Happy chewing!   ::)

Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

CHD63

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #31 on: October 21, 2009, 05:40:46 pm »
Kay .....

I was concerned that you did not have a BAHA aha moment.   :-*  I am not SSD but have been wondering if those of you who are long-term SSDers have a situation in which your brains have adjusted/compensated for unilateral hearing for so long that it is a brain perception issue.  Could the brain be re-trained to hear/perceive sound through bone conduction, but it would just take longer than someone newly SSD? 

I say this because I was fitted with a hearing aid over a year ago in my AN ear only.  It was so uncomfortable (on several fronts) until several earpieces later and many adjustments in sound levels that I did not wear it consistently until about three months ago.  Now I rarely go without it, except when sleeping, because I can hear so much better.  At first I kept telling the audiologist that I could hear no better and it was just an aggravation.  I think it simply was retraining my brain to accept the change in sound input.

Just a thought .....

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

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #32 on: October 21, 2009, 06:01:20 pm »
I need a non-surgical method for SSD

Grace -

have you looked into a TransEar?  Those who have them really like them - and they are non-surgical.

Clarice -

your response to Kay is right on the money.  What you are suggesting about retraining the brain is mainly the issue behind Kay's lack of a BAHA aha moment, the way I understand it.

Jan
« Last Edit: October 21, 2009, 06:03:10 pm by leapyrtwins »
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

JerseyGirl2

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #33 on: October 21, 2009, 06:49:34 pm »
I was concerned that you did not have a BAHA aha moment.   :-*  I am not SSD but have been wondering if those of you who are long-term SSDers have a situation in which your brains have adjusted/compensated for unilateral hearing for so long that it is a brain perception issue.  Could the brain be re-trained to hear/perceive sound through bone conduction, but it would just take longer than someone newly SSD? 


Oh, yes. This has certainly been my theory since day one. I was expecting my doctor to tell me, "you need a hearing aid," instead of, "you have an acoustic neuroma." My hearing loss was very gradual -- over a number of years -- and I was virtually SSD before my AN surgery, to the extent that nothing sounded different to me after my translab procedure than it had for some time before. My brain had adjusted quite well over the years. I had the BAHA abutment surgery done at the same time as my translab and started wearing the BAHA sound processor a few months later. I did not have a "BAHA moment," but I was confident that it would help over the course of time, so I wore it faithfully all day, every day. My brain has now learned yet another way of hearing and my BAHA is a very big help.

In my case, it didn't happen overnight!! And I would imagine that many others whose SSD was gradual, or those who feel comfortable with their SSD even if it were sudden-onset after AN surgery, wouldn't necessarily experience that BAHA moment either.

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

nteeman

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #34 on: October 22, 2009, 06:27:38 am »
Kay .....

I was concerned that you did not have a BAHA aha moment.   :-*  I am not SSD but have been wondering if those of you who are long-term SSDers have a situation in which your brains have adjusted/compensated for unilateral hearing for so long that it is a brain perception issue.  Could the brain be re-trained to hear/perceive sound through bone conduction, but it would just take longer than someone newly SSD? 

I say this because I was fitted with a hearing aid over a year ago in my AN ear only.  It was so uncomfortable (on several fronts) until several earpieces later and many adjustments in sound levels that I did not wear it consistently until about three months ago.  Now I rarely go without it, except when sleeping, because I can hear so much better.  At first I kept telling the audiologist that I could hear no better and it was just an aggravation.  I think it simply was retraining my brain to accept the change in sound input.

Just a thought .....

Clarice

Clariice,

I had about 85% hearing in my AN ear prior to surgery and after surgery I became SSD.  I tried the headband demo of BAHA 3 weeks after surgery and did not have a BAHA aha moment.  Still adusting to SSD (it's been 9 months now). I tried the TransEar and it had no effect for me. Not considering either at this moment.  I will say this though, of the two, I thought the BAHA had more of an effect than the TransEar.

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

mimoore

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #35 on: October 22, 2009, 06:06:52 pm »
Great  :-[ <sigh> something else for me to wish us Canadians had <big sigh again>.
Michelle
Not wanting the bi-cross! Holding out for something better!
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

GRACE1

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #36 on: October 23, 2009, 08:24:10 am »
Jan:

Thanks for the clarification on TransEar!  As much as I have seen it referred to on this website, I did not investigate or realize it was a non-surgical device.

When I contacted Sonitus about pricing, this is the reply I received:
Hi Grace,
Thanks for the inquiry. Our estimated price, once we receive our first FDA clearance (which we intend to be in mid 2010), will ultimately be determined by your doctor, but it will likely be in the $4,000 ballpark.
Regards,
Jason Shelton
VP Marketing
Sonitus Medical, Inc.
1825 South Grant Street, Suite 350
San Mateo CA, 94402
(650) 353-5827 - office
jason@sonitusmedical.com
www.sonitusmedical.com

Grace

Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #37 on: October 25, 2009, 07:30:26 pm »
Grace -

I'd look into the TransEar, I think it's cheaper than $4,000 - but I could be wrong.  Plus you only wear it in your ear - unlike this new invention that you'd also wear in your mouth.

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

heyct

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #38 on: October 28, 2009, 02:03:05 am »
Hi All,

My apologies for not being as present lately--altho I do occassionally spy on everyone:). I am still amazed that life has been just swell since my surgery last May & very thankful.

I just had my consult at UCSF for BAHA & my doc told me they still needed a few more people for trials. He recommended trying this first before drilling a hole in my head! Which makes sense, & BTW, the BTE goes in the bad ear. I'm keeping my fingers crossed since I'm am North Bay of San Francisco. The only thing I am a bit concerned about is EMFs. I know they still say to stay away from electrical powerlines & the jury is still out on cell phone use & these AN issues. Hmm, I'll have to think about it more, WIFI in my head? Not sure if that is a good thing.

Re: the BAHA demo. I found it very hard to notice the difference. Of course they had me in a sound booth trying it on. I was finally SOLD when they put a plug in my good ear & whispered on my bad side. Now that was amazing! Afterwards, I took the BAHA off & kept the ear plug in--it was so hard & a bit frustrating to follow the conversation. If SoundBite doesn't work, I'm definitely getting the BAHA.

Carolyn
Diagnosed 2/09
9 x 6mm
Translab Surgery: 5/20/09, Stanford..it was a Hemangioma!
Almost complete removal, will have to do update MRIs.
BAHA Ponto Pro 5/9/11

heyct

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #39 on: November 16, 2009, 11:45:45 am »
Hi Gloria!

Just wondering if you've received your Sound Bite & what do you think? I went down last week & will be receiving my sample the beginning of Dec.

Look forward to keeping everyone posted on this new technology!
Carolyn
Diagnosed 2/09
9 x 6mm
Translab Surgery: 5/20/09, Stanford..it was a Hemangioma!
Almost complete removal, will have to do update MRIs.
BAHA Ponto Pro 5/9/11

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #40 on: November 16, 2009, 12:12:53 pm »
Hi Carolyn,

I have the appointment to receive my Sound Bite on Wednesday the 18th, 2 more days. I am exciting !!

Take care,
Gloria
Left side AN 2.5x1.8 removed on 10/17/2007 endosc. by Dr.Shahinian (retrosig) at SBI, LA,Ca. Facial phalsys (almost back). Balance issues. Tinnitus. MRI 8 months later showed AN was resected completelly.TransEar 11/2008. Clinical trial for SoundBite 11/2009. SoundBite user.I have the best family.

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #41 on: November 17, 2009, 08:35:02 am »
Gloria and Carolyn -

please don't forget to give us your feedback on this.  I'm very interested to see how you like it.

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

mandy721

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #42 on: November 17, 2009, 03:36:47 pm »
My husband is very eager to hear how your trial goes.  He is using a CROS now, but it looking forward to hearing about the Sound Bite.  The technology sounds very promising and having the benefits of a BAHA without the surgery is exciting to think about.  Best of luck to both of you.
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #43 on: November 19, 2009, 08:04:38 pm »

Hi everyone;

I GOT MY SOUNDBITE YESTERDAY !!!!!; please give me one more day to post you with details about this experience. So far, I can say it is MUCH...MUCH... MUCH... BETTER THAN I EXPECTED!!! (Considering the fact that I was a TransEar user).

I'll be back in a couple of days,
Gloria
Left side AN 2.5x1.8 removed on 10/17/2007 endosc. by Dr.Shahinian (retrosig) at SBI, LA,Ca. Facial phalsys (almost back). Balance issues. Tinnitus. MRI 8 months later showed AN was resected completelly.TransEar 11/2008. Clinical trial for SoundBite 11/2009. SoundBite user.I have the best family.

mimoore

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #44 on: November 21, 2009, 12:01:01 pm »
Gloria why the change from a Transear to the Soundbite?
Michelle  ???
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

 


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