Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 195103 times)

heyct

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #60 on: December 09, 2009, 02:03:34 pm »
Thanks Gloria for posting!

I'm excited & can't wait for my SoundBite to arrive! I was hoping to have it for all those holiday parties I'm going to  ;D but it looks like it will not be ready for a while. Hopefully before Christmas, but most likely in Jan.

As for the battery, yes, that is a bummer. Fortunately, I no longer work in the city & have a quiet office in my home north of SF. I could see how that would be a problem for anyone in a busy work environment.

Will keep everyone posted once I finally get my SoundBite.
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 #61 on: December 11, 2009, 11:52:18 am »
Carolyn,

Thanks for your update, I hope you get your device for the holydays; please don't forget to post your experience when you get your SoundBite.

Have a wonderful day,
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.

another NY postie

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #62 on: December 11, 2009, 04:45:40 pm »
I emailed them to see when it would be available...His (Shelton) response:

We currently have a clinical trial underway for an intended first indication of single sided deafness with an intended first approval from the FDA in mid 2010. The trail is only happening in the San Francisco Bay area and is now fully enrolled. We'll keep you informed. We should be available more broadly by mid 2010

5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #63 on: December 18, 2009, 01:14:48 pm »
Hi another NY,
thanks for your info; I was going to ask this in my next appointment, ufff one less thing :)

Hi chocolatetruffle;
Could you get intro the trial? just curious!

Within the next week I have my follow up appointment. Please let me know if anyone has questions about the product that would like me to ask to the doctors.

Have a good day,
Gloria

PS, I apologize for the mistakes that I make in the spelling, for example in my last quote I typed "holydays" instead of "holidays" oops!. English is not my native language, sometimes my husband helps me to correct my posts, but sometimes he is busy.

« Last Edit: December 18, 2009, 01:20:18 pm by Jim Scott »
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.

heyct

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #64 on: December 29, 2009, 12:51:21 pm »
Hi Gloria,

Just checking in. Is your trial over? Are you deeply saddened not to have the SoundBite anymore? It must be hard to give up:)
Would you use this instead of a BAHA?

I get mine Jan 18, so I'm still anxiously waiting.

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 #65 on: December 29, 2009, 11:27:57 pm »
Hi Carolyn;

I went for my folllow up appointment and they gave me another SoundBite which battery lasts longer, this new device I have to wear for one more month :). I would definatelly wear the SoundBite instead of BAHA (because I don't want another surgery).  The whole trial is for two months, so I guess after this next 30 trial days I will have to return it :(

I love my SoundBite, it is difficult to go somewhere without it, you have no idea how helpful it is for me.

I am glad to hear that you will get yours soon.

Happy New Year,
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.

jazzfunkanne

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #66 on: December 30, 2009, 07:54:29 am »
do u still have too wear something behind the ear with this?
over 4.5cm AN removed dec 06

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #67 on: December 30, 2009, 08:13:07 am »
jazz -

the Sound Byte involves both a piece worn behind the ear and a piece worn inside the mouth.

If you go back to page 1 of this thread, you'll find a link for Sonitus that will explain everything.

It's a very interesting concept.

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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #68 on: December 30, 2009, 11:19:45 am »

Yes jazzfunkanne, I do have to wear the BTE (Behind the Ear), what they changed is the ITM unit (In The Mouth) with a battery that lasts longer.

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.

NancyMc

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #69 on: December 30, 2009, 11:53:53 am »
Gloria,
Are they aware that there is a great deal of interest out here?  Please let them know so that the rest of us will be able to enjoy it as soon as possible.
Nancy
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

saralynn143

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #70 on: December 30, 2009, 12:16:04 pm »
Perhaps I am naive, but I thought that for participating in the trial, you would be able to keep the device?

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #71 on: December 30, 2009, 06:31:36 pm »
Perhaps I am naive, but I thought that for participating in the trial, you would be able to keep the device?

Good question, Sara.

I thought that you get paid for most clinical trials.

Are either of us correct, Gloria?

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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #72 on: December 30, 2009, 11:01:46 pm »
Sara and Jan;
When I signed up, the agreement it clearly stated: “There is no direct benefit to you for participating. Your participation may help Sonitus to develop this new hearing device. You will be required to return the device to Sonitus Medical upon completion of the study” 

The study will ultimately reimburse me for my associated travel costs to and from their study center and a small amount in addition for having completed the full study. I am really not concerned about the money; I would not consider that as a payment. When I applied for the trial the last thing on my mind was whether or not they would pay me anything, I was just so excited to be part of something that can help me to live a better life.

Nancy;
I am sure Sonitus has studied the market already and one way to do that it would be by researching related websites like this one. Of course I have already commented to them about this forum and wouldn’t be surprised if they read it periodically.

Happy New Year to  everyone :)
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.

saralynn143

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #73 on: December 31, 2009, 07:25:33 am »
Thanks for letting us know, Gloria. I thought that since the mouthpiece, at least, was made specifically for you, that you would be able to keep the device. It's not like they can reuse it.

But then I think Jan should get an employee discount from Cochlear for all of her volunteer work, too.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #74 on: December 31, 2009, 10:57:56 am »
Gloria -

I know exactly what you mean about being able to help others - it's one of the reasons I'm a Cochlear volunteer and though they reimburse me for travel also, I generally don't charge them as I consider it an honor to tell others how enamored I am with my BAHA.  I'd tell others about it even if I weren't a volunteer - I just love it that much.  Although I've had my BAHA for almost 2 years now, I've only been a volunteer for about 7 months.

I once told my neurotologist that it's my goal to have every SSD person receive a BAHA, but having them get a TransEar or a Sound Bite - if that's their choice - would make me equally happy.  I firmly believe that if being SSD is an issue that people have a hard time living with (I DEFINITELY was one) that they should do something to improve the situation.

If you do talk to the powers that be @ Sonitus, please mention that the ANA's next symposium will be in 2011 in Cincinnati and they may want to exhibit there.  It would be a great opportunity for them to "get the word out".  Cochlear exhibited at the last symposium in August 2009 - and in years past, I believe - and I'm hopeful the ANA will book TransEar and Oticon in 2011 as well.  If Sonitus is interested, they should contact Judy V @ the ANA.

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