Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 211013 times)

mom of AN pt.

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #165 on: October 01, 2010, 07:58:24 pm »
I have been anxious for news...so emailed Sonnitus...

here is the reply:
We are currently in the process of seeking FDA clearance to bring the SoundBite Hearing System to market in the US. We have completed a clinical trial to support our FDA application, with an intended first indication of single sided deafness (SSD). As soon as the product is available (which we intend to be in the spring of 2011), we will get in touch with you with an update. In the meantime, our web site will be updated periodically with the latest news. We hope to be in touch again soon.

NancyMc

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #166 on: October 03, 2010, 07:06:50 pm »
Thanks, Mom!  ;)
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

Steve H

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #167 on: October 20, 2010, 08:17:33 pm »
I just thought I'd give a quick update regarding the Soundbite. A few weeks back I called Sonitus and found they are hoping to release the Soundbite in spring of 2011. But I was told to expect it to cost $6800. Reading over earlier messages in this thread, I noticed the price has crept up from $4000 to $6000 to now $6800. From the BAHA perspective, that's still reasonable. But from the hearing aid perspective, it's quite steep. Let's hope the real price is lower.

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #168 on: October 20, 2010, 09:01:03 pm »
That's really annoying...what an increase in terms of percent.  There must be some control to this.   I hope they are not greedy.
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #169 on: October 20, 2010, 09:03:03 pm »
Reading over earlier messages in this thread, I noticed the price has crept up from $4000 to $6000 to now $6800. From the BAHA perspective, that's still reasonable. But from the hearing aid perspective, it's quite steep.

Actually from a BAHA perspective, the processor (tiny hearing aid) is cheaper.  My first processor - a Divino - cost my insurance company $4,000; I didn't pay a dime.

When I upgraded my Divino to a BP100 (now modified into a BP3) I paid in the neighborhood of $2,600 or $2,900.

So unless you count the cost of the implant surgery, the BAHA would actually be cheaper than the Sonitus.

And in addition, the BAHA implant and surgery are both generally paid by insurance.  So if the Sonitus is lucky enough to get implant status, insurance should cover it.  If it gets classified as a hearing aid, insurance won't cover it.

I know there was talk of the Sonitus getting implant status, but I still can't see it.  From what I understand, nothing about it is permanent; it is a removable device.  On the other hand, the BAHA rod is a permanent fixture in the skull.

Jan
« Last Edit: October 20, 2010, 09:05:37 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

Steve H

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #170 on: October 21, 2010, 05:23:52 am »
The big jump in price for the Soundbite might be due to costs encountered during the trial period associated with getting a good fit and with working out the bugs. If that's the case, I suspect the price may drop over time. Regardless, $6800 gives me pause and I will have to see a lot of glowing reviews before considering jumping into the bleeding edge of this product that has raised our hopes so high.

And for those of us who shutter at the thought of implanting something into our skull, $6800 for a non-invasive alternative does put the BAHA in a different perspective.

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #171 on: October 21, 2010, 06:21:05 am »
Steve H -

as I said, the BAHA is not for everyone.

And, respectfully, I am offended by your comment that "the thought of implanting something into your skull" makes you shudder. 

Personally, and again respectfully, I can't imagine wearing something in my mouth to help me hear, in addition to having to also wear something in my ear.

Life is full of choices.  What may not be right for me, may be right for you - and vice versa.

I chose surgery to treat my AN, but I'd never say that choosing radiation would have made me shudder.

We aren't on the Forum to "knock" each others choices - just to help each other out. 

Best,

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

Steve H

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #172 on: October 21, 2010, 06:28:36 am »
Jan,

I apologize if my comment was offensive. That definitely was not my intent. And as you said, we're all here to share knowledge and to help each other out. And this site is indeed the best place I've found to share our experiences.

Steve

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #173 on: October 21, 2010, 06:31:27 am »
Apology accepted.

Have a nice day  ;D

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 #174 on: November 15, 2010, 06:36:55 pm »
The Clinical trial for Soundbite has officially ended. I am still on the fence about my review of the device but am also torn because I do miss hearing!

The fact is, it works!

The down side, I never did get to try the new, smaller ITM piece & it also looks like there will be no custom BTE piece.

So, none of my fit & feedback issues were ever resolved and I have no idea if they have actually addressed the battery issue. That said, I personally would be hesitant to spend any money on the product, out of pocket. I guess it's kind of like computers. You never want to buy the new first version because all the bugs will be fixed later. I am still seriously considering a BAHA & now am looking into the BP3 or the other one that just came out, but, my leanings would be towards the tried & true BAHA.

I personally found the SoundBite to be a bit cumbersome. It really aggravated me in my social environment when I couldn't chew food. It seems like snapping something to my head would be alot easier, strange as I know it must sound:)

I believe the SoundBite to have true potential & will work for most people, but also feel it shouldn't be rushed thru the R&D process so the product will be exemplary.

It would be interesting to hear what the other people in the trial have to say.
Thanks,
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

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #175 on: November 17, 2010, 11:00:55 pm »
I am still seriously considering a BAHA & now am looking into the BP3 or the other one that just came out, but, my leanings would be towards the tried & true BAHA.

The BP3 isn't a new BAHA processor that just came out.  It's a BP100 that's been modified.  The BP100 made it's debut in August 2009 and it's had a few issues along the way.  In September 2010 Cochlear started to correct those issues and the BP3 was born. 

Cochlear is in the process of developing an upgrade to the Intenso (stronger than the BP100/BP3) but hasn't released any information on when it might be available to the public.

I've had some issues with my BP3 - more than I ever had with my Divino, which hasn't had any issues.  But, it stands to reason.  My Divino has only one channel and isn't programmable.  My BP3 has 12 channels and is highly programmable.  With new technology "glitches" can occur.  But despite the issues I've had with my BP3, I'm extremely happy with it - the sound quality blows the Divino away and it works much better in noisy/crowded environments.  I'm also extremely happy with the customer service I've received from Cochlear.  IMO their customer service is stellar.

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 #176 on: November 18, 2010, 12:19:40 pm »
The Clinical trial for Soundbite has officially ended. I am still on the fence about my review of the device but am also torn because I do miss hearing!

The fact is, it works!

Hi Everyone,
My trial is over too and my life is limited again. There are no words to explain how much I miss my SoundBite.  It worked for me, and so far it is the best solution I can go for, since I don’t want another surgery in my head.

With this second trial (still with the original model because I didn’t get to try the smaller one) my comments are:

•   The device lasted about seven hours of service. I wish Sonitus improved this issue.
•   The quality of the sound was the same as the device of the first trial, which is a clear/stereo sound.
•   It helps with the directionality.
•   In quiet conditions I could speak by phone with my bad ear without experiencing feedback.
•   In quiet environments I didn’t miss anything of a conversation or sounds.
•   It helps with the speech recognition.
•   In noisy environments I didn’t find any advancement in this second device. I told Dr. Murray (Sonitus’ mentor) that I wish it worked the same as it does in quiet conditions. Still helps, but not too much, unless the other person speaks very close to the bad side; in this case, it is possible to hear even if that person is whispering.
•   Before I finished the trial, I went to the dentist to have a check, especially of my teeth where the ITM was placed, and he didn’t find anything wrong or unusual; my teeth are intact.
•   It doesn’t help with the tinnitus; unfortunately this horrible issue remains in my brain all the time  :(.
•   I made a comment to Dr. Murray that in the last six months, during the trial, I had migraines only a couple times, and I felt so happy for it, because I have been having constant migraines after the surgery.  I am not sure if the device was helping me with this issue, even the doctor didn’t know.

Carolyn,

It is sad that Sonitus couldn’t improve your ITM and I can imagine how hard it was for you to take it out every time you had to chew something; fortunately, now we have other choices like Baha to improve our hearing condition, and I really hope you can find the solution for your hearing with this device.  In addition, I think that when you get the Baha, your comments and comparisons between Baha and SoundBite will be extremely helpful for us, since you could be the first person in having experience with both devices. I wish you the best and I am glad to have met you.

Have a good day,
Gloria
« Last Edit: November 18, 2010, 12:31:48 pm by Arasha »
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.

Dizzy miss

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #177 on: November 18, 2010, 05:45:55 pm »
I was told "No Baha because of yearly MRI'S" the alternative sounds good!

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #178 on: November 18, 2010, 10:19:32 pm »
I was told "No Baha because of yearly MRI'S" the alternative sounds good!

Dizzy -

this is TOTALLY inaccurate information.  You can have MRIs with a BAHA.  My BAHA implant was done in March 2008 and I had an MRI of my head in April 2008, April 2009, and April 2010 without issue.  I'll be scheduling my next MRI in April 2011.

The BAHA "equipment" is made of titanium and therefore MRIs aren't a problem at all.  BAHA wearers do need to detach their processor before going into the "tube", but the only other thing that is required is telling the tech that you have a BAHA implant.  For some reason they like to know this.

Also, just another FYI.  A BAHA implant isn't an issue with airport security either - because it's titanium it won't cause you to "beep" when you go through the metal detectors.

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

KKorkut

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #179 on: November 20, 2010, 03:53:33 am »
Hi,
in quite environments I don't need any hearing aid because I don't even realize that one of my ear is deaf. So in the office or at home I think I will remove ITM device out of my mouth if I use soundbite. The environments which I realize that my left ear is deaf is and I can not communicate with people is below;

* during lunch time in cafeteria when there are a lot of people talking arround and one of my colleagues sits on left side of me and tries to talk to me
* if I am travelling in my friend's car ( during driving there is no problem because my right ear is well ) sitting on the right and the CD player is turned on ( or the sound of the engine or traffic is loud enough ) I can not hear what my friend is saying easily. Because of this reason I usually prefer to go arround with my own car because it is a disgusting experience otherwise.
* walking in the street with a lot of traffic sound when my friend walking on left side of me tries to talk to me I have to change my position in order to take him on my right side

if soundbite will not help me in above situations it will have no use for me.

Best Regards,

Koray