GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!

[Arasha]

Hi all!
 Hey Gloria, I think I saw you in the office, but we were in different rooms & by the time I stood up from getting my mouth photos done, you were gone! At least it looked like you from your photo!

Carolyn,
If I new you had the appointment the same day I was there, I would have kept my eye out for you. I saw two ladies over there and a man, but I did not have idea that it could be you. I wish I could have met you. Perhaps in the future.

I am glad to know that the doctors at Sonitus are working on a special BTE for you, I am not in that group, so I can’t wait to know about your experience.

Now, I feel more comfortable and confident to go anywhere with my SoundBite.

Have a wonderful day,
Gloria

[Arasha]

Hi everyone,
It has been twenty five days since I got the SoundBite for my second trial. I got one BTE and two new ITMs  little more comfortable than the first one I received in the first trial, and pretty much the same shape and size.

FEEDBACK.
I agree with Carolyn about the feedback, I too experience feedback with this device and I told the doctors about this issue but they said that they are not concerned about this because the new device that I will get after three months (two months more) will be totally different and improved.

A particular thing that I can say about this device is that the microphone seems to have a higher volume because the sounds are clearer than before (when I made the first trial), that may explain the feedback, but as the doctors said, the final device will not have that problem. Anyways, it is very nice to hear clearer.

TINNITUS.
I was carefully concentrating about how the SoundBite works with my awful tinnitus, and I can say that the ringing is the same. My tinnitus does not decrease or increase with or without the device, probably that is the reason why the device it is not as helpful in noisy situations as it is in quiet conditions. This group of doctors at Sonitus were also studying to find a solution for tinnitus, but  they could not find yet a cure for SSD people with that problem, as Dr .Michael Murray remarked when I had this conversation with him. It is sad because the tinnitus is really annoying.

I had the chance to see the final models of the BTE and ITM, and WOW they are half size compared with the ones I am wearing now. The final charger is also different and more functional. Let’s see how does the final devices work. I can’t wait to try them.

I will keep posting.

Have a great day,
Gloria

[kenneth_k]

Hi Gloria.

I find this Soundbite invention very interesting. I guess it will come to Denmark, eventually.
In the next couple of weeks, I'm going to have my CSF leak fixed. I believe, they have to do a sub-total petrosectomy, and therefore also block some of the exterior ear canal.

How far does the device go into the ear?

Best regards, Kenneth

[Arasha]

I wonder if one of you would ask the company or whoever is running the trials,  how physicians (and dentists) are being trained for distribution in areas outside of the Bay area?  Do they have a list of doctors/ Dentists we will have access to, or will the first "customers" need to travel to the Bay area.

Debi,
Sorry for the delay in replying. I was told that SoundBite will be in the market on SEPTEMBER this year. Regarding your question above, I expect an answer from Sonitus very soon. I will let you know when I have their reply.

Take care,
Gloria

[NancyMc]

Yippee!

[Arasha]

How far does the device go into the ear?

Hello Kenneth;
Thanks for your comment. When I read your post I started to research about "sub-total petrosectomy" and now I have an idea of how the exterior auditory canal could be affected with this procedure.  I found this link of the anatomy of the ear http://www.hearingcenteronline.com/anatomy.shtml so I can explain you where exactly the wire goes into the ear.  The BTE (Behind The Ear) has the microphone which goes behind the Helix (Nr. 1 in the diagram), and the transparent wire goes where the number 5 is in the diagram ( External Auditory Canal). I am not an ENT, so in order to have truly answer, I addressed your question to the doctors at Sonitus(by the way it is a good question), and as soon as I have their reply I will let you know.

I want to tell you that when I am placing my BTE I begin to hear if just the microphone is close to the ear. Anyways, let’s wait for Sonitus’ answer.

I wish you good luck in the CSF procedure. I will keep you in my thoughts and prayers.
Take care,
Gloria

[Arasha]

I wonder if one of you would ask the company or whoever is running the trials,  how physicians (and dentists) are being trained for distribution in areas outside of the Bay area?  Do they have a list of doctors/ Dentists we will have access to, or will the first "customers" need to travel to the Bay area.

Debi,
Regarding your question above, I expect an answer from Sonitus very soon. I will let you know when I have their reply.
Take care,
Gloria

Debi,
I just got the answer from Sonitus. It states as follows:
"We cannot train physicians until we get our FDA approval, which is intended for late summer or fall. Assuming that goes as planned, we will visit the offices of interested physicians in cities around the country and provide trainig. The process will take some time, but interested patients will not have to travel to the Bay Area. We will make a list of physicians who provide SoundBite available on our web site when we get to that point."

I hope you'll find this helpful.
Take care,
Gloria

[Arasha]

Hi Gloria.
In the next couple of weeks, I'm going to have my CSF leak fixed. I believe, they have to do a sub-total petrosectomy, and therefore also block some of the exterior ear canal.
How far does the device go into the ear?

Kenneth,

Regarding to your question, I just got the following reply from the experts at Sonitus. (This group of people is a very effective, efficient and well-organized  team).
 
"The microphone component sits into the opening of the ear canal for retention. We are working on shorter microphones for reasons such as the one described in the question sent to you.  I am sure we will have several options for those with surgical changes to their ear canal, pinna, etc.  Lily Woodby, Doctor of Audiology."

Hope this can help you Kenneth.

Take care,
Gloria

[Esperanza]

Hi, I have found this thread really interesting  -   is it on the market just in the USA from September?  Would it be possible to ask
when they would expect to have the product available in the UK please?
I am so ready for some help with the SSD but don't want to go the surgical route, I've been looking into the Transear
but think the Soundbite might be just that bit better....
Thank you.

[kenneth_k]

Gloria,

thank you for your swift and kind response. I am happy to hear, that Sonitus is trying to solve every thinkable problem.
I look forward to new inventions in that area with comfort.

Best regards, Kenneth

[mom of AN pt.]

Thank you Gloria for the updates!

I am checking in every few weeks for your comments and try to share them with my daughter.  (look forward to them as they do seem so positive)  Wow, September and it may be smaller and provide clearer sounds.

Yay

Debi
Amanda's mom

[mom of AN pt.]

just googled to see if any info. updates on the Soundbite were on the web...

I just found this one recent article...if anyone is interested.

http://www.inhabitat.com/2010/05/24/soundbite-a-hearing-aid-that-transmits-sound-through-teeth-and-bones/

the last paragraph =
"The device is anticipated to obtain FDA approval and if it does, it will hit the market this summer for about $6,000 (compare that to surgery for a BAHA, which can run well over $10,000.) Sonitus Medical, Abolfathi’s company, plans to negotiate with insurance providers to reimburse patients for at least part of the cost. Other applications for the technology, including wireless, water-safe MP3 players and stealth communication for intelligence personnel, are also being considered."

[dalern]

I am very interested in the comments about long term SSD prior to getting a BAHA.  My SSD has been with me for 11 years and it was a sudden onset.  When I saw Dr. Harris at UCSD, he did say that the longer you have had SSD, the less impressive the result may be from the BAHA.  I did demo both the BP100 and the Ponto.  I noticed more of a difference with the BP100.  Again, everyone is different.  However, though I did not feel the result was perfect, all I am really interested in is knowing that it will improve enough so that I know when someone is talking to me on the affected side, as well as being able to participate better in noisy environments (like restaurants).  The audiologist told me that whatever improvement I felt with the demo, the reality would be up to 20% better (because of the "real" connection to bone).  It was difficult for me to wear the demo for more than 2 hours at a time (even on a soft band) because of the appliance digging into my head and hurting!  But, I know when it is attached to the abutment, it will be fine.  I got to a point over about 7 months where I decided that some improvement was better than no improvement.  I figured I have nothing to lose and everything to gain.  So, I am set for June 30th.  I will keep in mind what all of you said about having to wear it for a longer time to get a better affect.  I know that I have acclimated to my SSD and have done pretty well adjusting over the years.  However, in social and business situations, I truly need improvement and want to be able to stop saying "WHAT?" during so many conversations with multiple participants.  I am tired of people thinking I am rude because I have no idea they are talking on my deaf side.  So, I will give it however long it takes. 

I agree with those who talked about the thought of a battery in the mouth being a deterrent.  That, plus something in my ear would not be a good choice for me.  I wish you lots of luck Gloria, and will be anxious to hear more about this device.

Dale

[NancyMc]

mom,
That's great news!  Thank you.
When I met with Dr. McKenna this afternoon for my one year plus post-op follow-up, he said he knows the people who designed the Soundbite.  He said I might be a good candidate for it considering my concerns.
I do hope that the insurance company will assist with the cost.
Nancy

[Mei Mei]

Once the insurance companies realize that there is a bone conduction alternative for SSD that doesn't involve surgery they will be more than willing to pay for it over the BAHA.
Mei Mei