Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 222686 times)

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #105 on: February 04, 2010, 11:57:11 am »

ANAUSA forum is not read just by people with AN issues. I am very proud to be part of this forum.  I want to share the information I just found out at “Thestar.com”, the Canada's largest online news site.

http://www.thestar.com/news/canada/article/759293--new-hearing-aid-conducts-sound-through-tooth

Best wishes 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.

raj_06

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #106 on: February 04, 2010, 01:18:02 pm »
Nice.. :)
"After all these ordeals, I still say all is well":)

Pooter

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #107 on: February 04, 2010, 02:56:52 pm »
Interesting article..  I wasn't sure if I was reading an advertisement for Sonitus or just an article about them.. ;)

Something struck me as odd (aside from the obvious leaving out of any of the concerns that many of of us have and only focusing on the positive).  It was this statement:  "While some hearing aids use bone conduction to send sounds to the cochleae, they also require a titanium post to be drilled into the skull."

That statement leaves out completely the thousands of users of TransEar, which uses the same bone conduction principle used in Sonitus, BAHA and the Ponto series of devices..  And takes a negative shot at users of those BAHA-like users.

Decent, but incomplete in my opinion, article..  Thanks for sharing it..  It's nice to know that others besides AN-ers read this forum as many will get a better understanding of what we all privately deal with daily.

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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heyct

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #108 on: February 12, 2010, 06:49:18 pm »
Clinical Trial Update:

Apologies for being so tardy, as I know everyone has been waiting for a 2nd opinion on the SoundBite.
First off, I do not have a tinnitus issue, so I cannot advise on it.

I have 1 more week of the trial & I guess I am not completely SOLD. Advances are being made everyday on the product & I think I would reconsider if the ITM piece were smaller. It originally started as a real wire retainer similar to the dental one. It's official, I do not have a "Big Mouth" :D The dentist said he knew this would be an issue. I also have a ridge on the top of my roof (forgot the official name), in the center, that protrudes like a mountain. In most people, the roof is relatively flat or concave. This has been causing the ITM to rub on the inside of my mouth making long-time wearing uncomfortable. I still cannot eat comfortably w/the ITM (soft bread is easiest), & I still bite on the wire when closing my teeth. I believe my teeth have been drilled down in back to accommodate for my small palate.

I had to have 2 more ITM pieces made as the two I had broke in different places. The first one they remade according to the initial design. It still feels uncomfortable  & big in my mouth, the second, was redesigned slightly to fit my mouth better. It is my favorite ITM out of the two, but I still hit the wire & is uncomfortable when I eat. I am also currently experiencing increased feedback in my new ITM which hasn't been there the first 2 weeks.

Overall:
I do miss the SoundBite when I am not wearing it. I notice that I cannot hear as well, & locating my toddler is more difficult. I thought I would be perfect for the Soundbite since I do not work in a big city or office environment, however I still find it a bit cumbersome. A big advantage for me would be able to eat at a restaurant w/the piece in, however, I still cannot do it. I'm thinking I would still rather have a hole in my head.

Sound has been good in a noisy gym w/lots of children & at a noisy daycare.
Hearing a creek w/running water has been a more pleasureable experience on my SSD side.
Low talkers are still hard to hear.
Wearing an iPod isn't as closed off as it used to be. I can still monitor the environment around.
It has been a detrement at bigger functions. All you can eat Crab Feed, it did not work well, as well as Superbowl w/all the good food around. I was constantly taking the piece in & out. I can see you could lose it pretty easy.

Ever hear how the Indians would put a pebble in their mouths while going long distances to keep their saliva going? That's what it reminds me of when I go for a run & pretty much all the time. It is comfortable in the mouth, but I definitely know it is there. I can converse comfortably with it in.

I think there are still some bugs in the device, however if they can yet make it even smaller & can fix the feedback issue I would reconsider. It has been a great experience to be able to try it out before purchasing.

If I've missed any points, please post questions.
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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #109 on: February 14, 2010, 11:40:44 pm »
Carolyn,

Thanks for posting your experience with SoundBite. I didn't know you had the "alveolar ridge", I can't imagine how uncomfortable it was for you to chew while wearing the ITM. The feedback you were experiencing could have been from the fact that you were touching the wire with your teeth .The ITM fit very well in my mouth and fortunately I didn't have problems with braking parts or anything like that, I too have a petite mouth, albeit absent the ridge :). Sorry you missed the best part of wearing the SoundBite, which is EATING at a restaurant, or watching the TV while eating "nachos"  without missing any words from TV.

I know you had the Baha demo, you are probably the only person who has had the chance to try both devices. How do you compare the hearing benefits between the SoundBite with Baha?

I read on another thread that you found it very hard to notice the difference when you were having the Baha Demo but you were finally SOLD when they put a plug in your good ear & someone whispered on your bad side. When I tried the SounBite I noticed the difference immediatelly without plugin my good ear.

As I mentioned before, everything fits its own niche, at least now we have another device to try until we finally find the one that we are comfortable with. When we are going to make an important decision about our health, in this case, to improve our hearing, it is extremelly important to research things thoroughly so we can be confident in our final decision. This is the reason why it would be helpful for everyone if you could describe the differences between Baha and SounBite.
I agree with you that the SoundBite still has some bugs to be fixed, for example the battery life, but I still think it is an amazing breakthrough.

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 #110 on: February 15, 2010, 09:23:10 am »
I read on another thread that you found it very hard to notice the difference when you were having the Baha Demo but you were finally SOLD when they put a plug in your good ear & someone whispered on your bad side.

This is only true if you've been SSD for a long time without any hearing "assistance".  Those who try the demo within a few months of being SSD notice a big difference right away.  This was my experience.

Being SSD for a long period of time gives the patient time to adjust and adapt to being SSD.  I know when Kaybo tried the BP100 demo @ the ANA Symposium it didn't make much of a difference for her, but then again she's been SSD for 12 or 13 years.

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 #111 on: February 19, 2010, 01:23:03 pm »
I think I was SSD for about 1.5 yrs, so maybe that is why it was hard to notice. I only tried the BAHA in the audiology hearing booth, so cannot accurately compare the two.

Yesterday, I sadly gave up my SoundBite. I will miss hearing. Luckily they mentioned the ITM part, that was giving me problems is going to be 40% smaller the next go around! There will be another, longer study & hopefully I'll be able to try it out again.

Doing the clinical trial has made me even more determined to hear again. I'm feeling like I don't want to wait anymore, just give me something:)

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 #112 on: March 10, 2010, 09:19:07 am »
I believe the launch date for SoundBite has been pushed out. I believe until the end of the year.

I just found out that I will be a part of another clinical trial for 6 months! I can't wait as I am seriously straining to hear everything now that I had to give up my first product. The ITM piece is supposed to be much smaller so it should fit my mouth better.

I can't wait!
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 #113 on: March 10, 2010, 11:25:58 am »
Good for you Carolyn!, I hope this time the ITM fits better. I am very glad that Sonitus is not giving up under situations like the alveolar ridge, which gives me the perception that they want the product works for everyone with SSD issues. I too am waiting for the second trial, like kids wait for candies, all this time without a hearing aid has been very hard for me; especially after wearing the SoundBite I realized, like you, that I need a hearing aid ASAP. 

I attend classes at the College, I have to choose the very first chair at my left side in order to let my right ear to capture the hearing. When a classmate is speaking I have to look around to figure out where he/she is; I feel like a dumb. The other day at Lab class, my teacher came to my AN side and asked me something; first of all I didn't understand what she said, and second, I turned back my head at my right side. Experiences like this occurs me every day. I am just tired about this. Isn't awful to be SSD?

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 #114 on: March 11, 2010, 08:29:05 am »
Please keep us updated on the release date.  I will mention this device to my neurotologist when I go for my annual exam in two weeks and see what kind of reaction I get.
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

mom of AN pt.

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #115 on: March 11, 2010, 03:27:05 pm »
Gloria,
 I copied and pasted your comments about the Soundbite and emailed them to my 21 y.o. daughter, several weeks ago.  (She had AN surgery in 2005)  She  identified with your comments about what you could not do and how the Soundbite was working for you.

Consequently she is very excited to get one .  I have tried to get the date they will be available but have not gotten any information so I guess we all are just waiting.  I wonder however if you might ask for us,  if candidates for the Soundbite will have to come to SF area to get them (Initially anyway)? 

BTW. Your last comment about being in class and labs...she is also in college a biology / Chem major in large lecture classes and labs all the time, she never complains but I have learned from your comments how you are forced to cope every day.  I never realized the full extent of your issues.

I am so happy that this technology is being developed, our hopes are up.   

Debi




Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #116 on: March 11, 2010, 11:30:09 pm »
  I have tried to get the date they will be available but have not gotten any information so I guess we all are just waiting.  I wonder however if you might ask for us,  if candidates for the Soundbite will have to come to SF area to get them (Initially anyway)? 

Debi, you are such a wonderful mom. After reading your quote I can perceive how much you are concerned about your daughter, and her everyday hearing challenges. This just made me remember about my mom, if she was alive she would be doing the same you are doing. Sadly she passed away four years ago, You have no idea how much I miss her :(

Tonight, I emailed to Sonitus your question. As soon as I get their response I will be posting it here.
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.

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #117 on: March 12, 2010, 10:37:58 am »
Hello,

I copy below the response received from the President of Sonitus:

"We recently filed our regulatory application with US FDA. This process normally takes 3-9 months depending on FDA questions and concerns. As soon as we receive the FDA clearance, the SoundBite hearing system will be available on the market.
Meanwhile, we are re-enrolling the SSD patients from the previous study for the long term study (6 months). Lily is going to contact everyone in the next 1-2 weeks to see who is interested and setup the appointments. The plan is to give back the old devices for the first three months of the study and then switch everyone to the new devices that are much smaller (both ITM and BTE). Let me know if you have any additional questions."


I can't wait for the second trial with the improved devices. I Will keep you all posted throughout the trial stages.
This time I will focus on how SoundBite work with my tinnitus.

Have a nice weekend,
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 #118 on: March 13, 2010, 08:28:33 am »
Oh, I'm so excited!  And so jealous!
Good luck.  And please report on the new device.
Thank you.
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

Larry

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #119 on: March 14, 2010, 07:56:08 pm »
Thats great news - hopefully they'll find their way down under as well.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz