Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 196556 times)

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #45 on: December 02, 2009, 02:29:23 pm »
Hi everyone,

I haven’t posted for awhile because I have been trying the SoundBite out in different places in order to come up with some more accurate answers of how well it works in a variety of environments. After 15 days of trial I can answer the questions that you guys were asking in this thread:

-ONE OF THE PLACES WHERE CAPTURING CONVERSATION  MOST DIFFICULT FOR US IS AT THE RESTAURANTS, IF I EAT WILL I CAPTURE INCREASED SOUNDS OF CHEWING?

      NOT AT ALL, you don’t hear sounds of your chewing.

-TWO PIECES BEING INVOLVED, WHT IS THE POTENTIAL THAT ONE OF THESE PIECES WILL MALFUNCTION OR NOT WORK PROPERLY?
 
Both pieces work together if one is not working, I don’t have “service”.
The battery of the ITM device (In The Mouth) is rechargeable, it runs out in about 3h30’ to 5 hours depending on how noisy or quiet the conditions are, In my case, I was trying in noisy places. Part of the overall solution is that they provide each person with two ITM devices so one can always charge while the other one is being worn, it comes with 2 chargers and they have utilize the USB interface so anything that can charge USB should (my words) be able to charge the devices. It comes with a wall outlet to USB adapter but you could just as easily use a utility outlet  (cigarette lighter) to USB adapter for your car and presumably just plug it right into your computer. It takes aprox 1hour 10 min to recharge the battery.

The battery of the BTE device (Behind The Ear) runs out in about 12-15 hours, it is also rechargeable.

Both devices are easy to wear and easy to recharge.

-DOES THE “RETAINER-LIKE” DEVICE CAUSE THE WEARER TO TALK FUNNY?

 NOT AT ALL, it doesn’t bother your speech; sometimes I forget I am wearing it in my mouth.

-AS YOU AGE, AND POTENTIALLY HAVE A NEED FOR DENTURES, DOES THAT MEAN YOU CAN’T CONTINUE TO WEAR THE MOUTH DEVICE?

I am pretty sure a user has to have the molars because the ITM it is held in place by the last upper molar on the AN side. The device uses bone conduction so I would think that it would have to at least attach to a tooth or perhaps dental implant in the bone (i.e. stud of some kind) but this question is best answered by a professional.

-  DOES IT HELP WITH DIRECTIONALITY?
YES, IT DOES, not a 100% but it is helpful, the other day I heard the noise of a car coming next to my AN side and immediately I turned back to see in that side. I could recognize where my husband was when he called me in a grocery store.

-     THE RETAINER –LIKE DEVICE- CAN YOU WEAR IT WHILE EATING?
ABSOLUTELY, you can eat what you want, I am able to chew gum.


COMMENTS:

The first days I was experiencing feedback and little shocks on my tongue with the battery of the ITM (like bubbles), not big deal, it disappeared after 4 days.

As soon as I put on the SoundBite my hearing changed totally, I can hear clearer, it gives me hearing in my AN side (through bone conduction) It seems about 85 % in quite ambiance and 55% in noisy conditions but that is just a guess. One thing I like is that the noises or voices don’t sound like an AM radio. Of course nothing is similar to my natural hearing but this is the closest I have come. When I lie down over my good ear and can still hear well.

I really miss the device when I am not wearing it; the difference is really impressive, I am not worried anymore about where to sit in a restaurant with people at the table. I tried it in a very noisy place, with many  TVs on in different channels, music, with a lot of people talking, laughing and people at my table talking, I could hear both sides, that was so amazing!!! I could even hear my husband WHISPERING IN MY AN EAR (of course he needed to be very close to my AN ear), I just felt so happy.

I have been to a restaurant with a live band playing, grocery stores, malls, theatre, in the car with the radio on, etc, etc and I could still hold a conversation.

I was a TransEar user before and I can say what at difference. I kept my TE because I was told that the more I wore it the more I would acclimate to it and that the experience would improve but after 8 months of wearing it was the same and I finally gave up wearing it. Sometimes I could not notice the difference between wearing it or not. When I did wear it I tended to experience fullness and a decrease of hearing in my good ear. Unfortunately that was my experience with the TE, I heard comments that works great for other users.

One more thing; The BTE is automatic, meaning you don’t have to worry about making any level adjustments, etc.

I am told that this device should be covered by most insurance companies because it is not considered a “hearing aid”; according to the explanations of the inventors at Sonitus. Of course, your mileage may vary, but the point is that the insurance companies cannot hide behind the blanket statement “We don’t cover hearing aids” etc.

I should emphasize that these have been my own personal experiences to date with the SoundBite, I am obviously excited by my results but still wish to try and remain objective. It’s hard.

There is another person in this forum, which will have the chance to try the SoundBite within this week. Carolyn, please tell us your experience when you get it. I am sure the SSDrs will want as much consensus as possible.

Happy holydays to everybody,
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.

Pooter

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #46 on: December 02, 2009, 02:57:39 pm »
The battery of the ITM device (In The Mouth) is rechargeable, it runs out in about 3h30’ to 5 hours depending on how noisy or quiet the conditions are,

The battery of the BTE device (Behind The Ear) runs out in about 12-15 hours, it is also rechargeable.

Gloria

I've been reading along in this discussion with some fascination, however the battery times listed here seem to be quite low.  For me, I get up about 7am and then finally get home from work about 7pm and ultimately to bed by midnight or so... If I'm going out that night, I may not be ready to go to bed until 3am or so..  That's 17-20+ waking hours a day.  With those battery life times, I would be changing devices or batteries (or doing without because I'm recharging batteries) multiple times during the day.  That just not feasible for most people, including me.

If you have any kind of active lifestyle, you'd be hard pressed to make this a workable solution to wear most of the time.

I like your review and it's obviously very positive for you.  I'm happy about that..  But, I would think that most of us that are looking for a hearing device would be looking for something that lasts longer than 3.5-5 hours at a time between charges.

Have I gone wrong somewhere in my thinking?

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

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another NY postie

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #47 on: December 02, 2009, 03:00:02 pm »
Gloria, what fabulous news!  I know I am going to end up with some hearing device and this sounds so promising!  Your feedback was great - do you have any idea when it will be available?  I so wish they were also running a trial on the East coast.  Hope springs eternal with SSD!
Cheryl
 ;D ;D ;D ;D
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'

NancyMc

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #48 on: December 02, 2009, 03:09:55 pm »
I'm taking a number right behind Cheryl.  This device sounds very attractive.  Thank you for being a guinea pig for us, Gloria.
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

cindyj

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #49 on: December 02, 2009, 04:14:47 pm »
Great feedback, Gloria!  Glad to hear it's working well for you.  Please come back and update us again as you continue to use it.  Great for those who are looking for an "aid" to have another option...

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

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mimoore

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #50 on: December 02, 2009, 06:03:04 pm »
I am very excited for you Gloria and of course a wee bit jealous. Not many options in Canada.
I kind of have to agree with Brian the life of the battery is kind of short. If this is a trial is this something you may mention?
Keep us posted I am very interested.
Michelle  ;D
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.

saralynn143

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #51 on: December 02, 2009, 10:26:04 pm »
I'm betting that just like cell phones and iPods, battery life for this device will improve as it develops. What a wonderful thing to have another option for SSD.

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
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Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #52 on: December 02, 2009, 10:30:23 pm »

Hi everyone,

Regarding the concerns with battery life, yes, it isn’t the best case scenario but you have to remember that battery technology is improving everyday and that the device will benefit from everyone’s battery research. The whole world is working on battery technology, every cell phone manufacturer, hybrid car maker etc etc etc. . Everyone is NOT working on SSD devices so to have a device that works well from an SSD perspective is pretty huge. Sure there are other devices but this one is non surgical which is pretty much the last thing I want after having my AN removed. Ugh. I can remember charging my cell phone throughout the day in years past, now I go days if necessary without recharging. This is only a trial device, judging from the fit in my mouth I could easily tolerate a larger battery size if it were presented as an option. I don’t doubt they have considered this but after all, why would they go through all that effort when their first objective would be to make a trial and see if it performs first?

Keeping with the cell phone analogies, does anyone remember the bag phone? Ha! How about the brick phone or even metal antennas on their home cordless phones. 

To put it into perspective, a quote from their website:

 â€œThis system is currently for investigational use only with clinical trials now underway intended to support an initial filing for FDA 510(k) clearance to treat single sided deafness.”

So as far as I am concerned it has no where to go but up, meaning it can only get better.

Cheryl, I will ask Sonitus about your question, I don’t know exactly when will they finally release the SoundBite.

Thanks  for your comments,
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 #53 on: December 02, 2009, 11:07:37 pm »
Gloria -

thanks for updating us; this is very interesting and sounds like it has a lot of potential.

If it won't be considered a hearing aid, what will it be called in order to get insurance coverage?  The BAHA is considered a prothesis; can this be termed one also?

The battery life is very short - I usually get about 2 weeks out of a battery in my Divino - but as others have pointed out there are sure to be improvements over time.

Being a BAHA user who is thrilled with my choice, I don't see any big advantages to this device - other than the obvious; not having a hole drilled in your skull  ;D  Which isn't a big thing to me - but I know it can be for others.

Your reports on directionality and performance in noisy and quiet settings sound similar but not as good as my experience with the BAHA - and I don't hear sounds like through an AM radio either.  As far as being self-adjusting to the environment, the new Cochlear BP100 and the Oticon Ponto Pro (BAHA devices) do that also.  I also chose the BAHA because I wouldn't be wearing anything in or behind my ear - it's invisible to others - and I really like that.

But that said, I'm sure it will be a great option for those who choose not to have a BAHA implant or a TransEar.

Please keep posting updates; this will be very valuable information for a lot of forumites.

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

chocolatetruffle

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #54 on: December 03, 2009, 12:23:33 am »
hello gloria
i just saw your post and i also live in the bay area, do you know if they are still accepting people for the trial as i am interested in trying this out. thanks!
chocolatetruffle


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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #55 on: December 03, 2009, 11:12:30 am »

Hi chocolatetruffle,

Please call to this number (650) 353-3971 and talk to Lily Woodby. I hope you can get into the trial.

Good luck,
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.

Pooter

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #56 on: December 03, 2009, 11:53:24 am »
Gloria,

First, I want to be sure that you were thanked for your input and trying the device and reporting results to us.  We're all very thankful for the insights since most of us are not able to do the trial ourselves.

Second, the battery issue.  I agree that research is going on all of the time into battery technology.  But, it seems to me that the technology already exists.  The TransEar and Divino and Intenso and even the BP100 all have massive better battery life than the SoundBite.  It's inexplicable to me why that same technology can't be used in the SoundBite to improve on the battery life.  I agree that the SoundBite battery life will get better over time.  In my mind they MUST improve it in order to be a viable solution or alternative to TransEar or BAHA.  Keeping the cell phone analogy alive, they're producing a product with "bag phone" type of battery technology when there are already devices available that (in your own words) last for days or even weeks on a single charge.

If I were in the trial, my primary feedback to them would be that they MUST improve the battery life to be viable.  3.5-5 hours at a time isn't enough for most people to even last an entire work day. 

I agree their primary effort must be in making sure that it helps with SSD.  Check.  According to you, it does.  Now, efforts need to be placed into extending the battery life otherwise, in my mind, it's not very helpful as an overall solution.

Next, I think they should consider dropping the price as well.  I think I remember you saying that it would cost around $4,000.  Your primary point being that it's a non-surgical solution to SSD and is a bargain at $4,000.  That's great.. But, TransEar is only $2,800 (and the battery lasts for weeks).  So, in summary if the battery could be improved to last several weeks and the price point dropped to more TransEar-like levels, THEN it would be a viable competitor for BAHA and TransEar.

Keep the updates coming.. Because, the technology in and of itself is fascinating and I look forward to seeing how they address those issues.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #57 on: December 03, 2009, 11:02:24 pm »
Hi Brian and Jan,

Thanks for all your comments. As you know, what I am doing is only a “trial”, I have forms to track each day the time I am wearing the SoundBite and I have to report this to Sonitus. I am also keeping  a journal of my experiences and my concerns which of course include battery life. My role with the trial is to help them to make a quality product.  Again, I have to emphasize that they are studying the device functionality, for all I know they have better longer lasting batteries already but don’t justify the cost for the trials. Ok, maybe that would be overly optimistic. ;-) but for sure they consider battery life an important factor.

I am just posting my own personal experience to share here with the community; I am not an expert or a vendor. Having SSD has been horrible for me and for sure it has been horrible for most of the people in this forum. I used to have very good hearing on my AN side before the surgery and of course I want something that will help make my life as close to normal as possible once again. I am very happy with the results of the SoundBite, it is better than I expected. Being able to hear clearly the sound of my rubbing fingers on my AN side as if it were my good side or to hear people talking clearly on my AN side is an amazing feeling for me. I feel lucky to be part of this trial and I will be very sad when I have to return my device. When they do become available I plan to purchase my very own. 

I am very happy to know that there is another option for us because not all the devices have been working well for everybody so far. TransEar was not for me but works for others, same goes for the BAHA. I was not a BAHA user and certainly no one in this forum has tried both the Sonitus and Baha yet so it is hard to make direct comparisons yet.

As a TransEar user I can tell the difference, there is no comparison for me between the TE and the SB. Regarding the price of the SoundBite, I haven’t heard anything yet although I think someone in this forum did mention an amount. I guess we will just have to wait and see. I wish I could have gotten my TransEar at the price that Brian saw it; I just checked and I see that I paid $3,250.00 just over a year ago on 10/2008. Considering that it was not working out well for me and I am not wearing it anymore it doesn’t really matter to me how long the battery lasts. Of course, my opinion would be different if it was able to work for me in my situation.

SoundBite is a great option for those who don’t want another surgery or the ones who are not able to get results from the TransEar. Each device seems to fill its own niche and it is just a matter of figuring out what your specific needs are and finding the right fit. Unfortunately for us it will likely require some trial and error.

I will keep posting my experiences, I have a follow up appointment in a couple of weeks and I am curious about what they will have to say about my experiences so far. I am taking notes of everyone’s concerns about the product to share with them, for sure they will appreciate them as they should certainly help them to better understand what kind of expectations their “market” has for their product.

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.

lori67

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #58 on: December 04, 2009, 11:37:28 am »
Gloria,

Thanks so much for sharing your experience with us.  I'm glad it's working well for you - and I hope they give you one for free - or very close to it - for your time and effort!   ;D

Technology is just amazing.  I'm sure what we'd consider a big deal (battery life) is just a minor detail to the developers, and I'm sure you're right, it just doesn't warrant the expense of a better battery at this point in the trial.

Sounds like a great option for people who don't want surgery!

Thanks again!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Tricia (horsekayak)

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #59 on: December 08, 2009, 04:49:04 pm »
thanks for sharing this with us...keep us posted
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

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