Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 210916 times)

heyct

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #195 on: February 04, 2011, 10:23:09 am »
After much thought, I have decided to get the BAHA. So, I'm keeping my fingers crossed as it is in the process of being preapproved by my insurance!

Although the SoundBite did work, indeed, it was not quite the perfect fit for me. (see my previous posts on this thread: fit issues, eating issues).

My reason for choosing BAHA:
I have excellent health insurance & might as well get it now if they will cover it,
My son is growing & will be more involved in "group" outings,
My biggest issue w/SSD is LOCATION, I simply cannot find anything!
I already have pins & metal plates in my legs...another piece of titanium is no big deal!
I'm only getting older :), & it will really be useful if my hearing diminishes like my mom who now has only 50% left!

SoundBite is still in the process of being FDA approved, so if I qualify, I'll still try to get one as backup.

So, keep your fingers crossed for me for the BP3!
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 #196 on: February 06, 2011, 11:43:57 am »
Great news, Carolyn!

As a BAHA wearer myself, I can say with confidence that I think you'll love your BAHA.

If you're going with a Cochlear processor and run into insurance coverage issues, contact Cochlear's OMS division; they'll help out.

Good luck!

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

mom of AN pt.

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #197 on: February 14, 2011, 03:58:08 pm »
Checked Sonitus website today and found:   YAY.

http://www.sonitusmedical.com/sonitus/news/single-sided-deafness-treatment.cfm

"SoundBiteâ„¢ Hearing System Receives FDA Clearance for Treatment of Single Sided Deafness"

San Mateo, California (January 27, 2011) – Sonitus Medical, Inc., a medical device company that manufactures the world's first non-surgical and removable hearing prosthetic to transmit sound via the teeth, today announced that it has received FDA clearance for its SoundBite Hearing System. The FDA 510(k) clearance is the first for the company and the product.


Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #198 on: February 14, 2011, 06:57:37 pm »
Oh Halleluya!   At long last!   Congratulations, Sonitus!
Mei Mei     ;D
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

NancyMc

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #199 on: March 09, 2011, 12:04:53 pm »
I've just discovered this news this afternoon.  I'm so tired of SSD.  Has anyone contacted Sonitus to learn when clinics will begin to open?  I'm willing to travel.  Thanks.  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

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #200 on: March 09, 2011, 02:37:58 pm »
I send them an email on their website.   Last year they returned my email right away, but this time there has been no answer for several weeks.   They must be inumdated with emails regarding the FDA approval.   I too am anxious to move forward and am considering going to Tennessee to get a TransEar fitting instead.   This is taking too long.
Mei Mei
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

KKorkut

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #201 on: March 10, 2011, 01:26:02 am »
Hi I got this email from Sonitus Medical recently,

Best Regards,

Koray


Dear Koray,
Thank you for your interest in Sonitus Medical.
We are extremely happy to announce that the SoundBite Hearing System now has FDA clearance for the treatment of single sided deafness (SSD). We are working rapidly to bring the product to the US market beginning this summer (2011) with the goal of having SoundBite available at a significant number of physician offices nationwide in the fall. Please check back with our web site for updates on where the product is available and other news. We hope to be in touch again soon.
Sincerely,
Sonitus Medical, Inc.
www.sonitusmedical.com

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #202 on: March 10, 2011, 06:35:19 pm »
Thanks, Koray.    I am looking forward to the fitting at long last.
Mei Mei
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

Larry

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #203 on: March 10, 2011, 07:27:07 pm »
Hopefully they'll get the product 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

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #204 on: March 10, 2011, 08:26:35 pm »
I hope so or you are welcome to come here and get fitted.   We'd love to see you here.
Mei Mei    :)
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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #205 on: March 26, 2011, 01:42:24 pm »
Hi everyone,

This week I received a call from Sonitus, so I have a little update to share with you guys. Sonitus is very busy right now, they are working on getting the coverage from insurances companies. In addition, they are  training the physicians whom will be able to work with the SoundBite around the USA. The device might be available for all of us on Mid-July 2011. The waiting is almost over.!

I just checked Sonitus’ website, and I found that the pictures of the device have not been updated yet.  For instance, the final SoundBite’s charger is different, the real one looks much better in functionality and appearance.

Have a good 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.

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #206 on: March 26, 2011, 02:06:47 pm »
I have decided to get the BAHA. So, I'm keeping my fingers crossed as it is in the process of being preapproved by my insurance!

Carolyn,

I hope everything went well with your  insurance’s approval to get your BAHA. I am anxious to know about your experience, since you can make comparisons between SoundBite and Baha. Despite, the fact that the “ In The Mouth” system (ITM)  didn’t work well for you due to your alveolar ridge issues, at least you were able to experience the hearing while wearing the SoundBite, even if only briefly.
 
Please keep us posted whether you got your Baha yet or not. Your information will be highly valuable.

Take care,
Gloria
« Last Edit: March 26, 2011, 02:08:20 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.

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #207 on: March 26, 2011, 04:14:39 pm »
Gloria,  Have you tried the sound bite yet?  I am very interested in this. I had microsurgery for a right AN in June 2010 and have almost complete hearing loss in that ear.  My surgeon said I would not be a candidate for a hearing aid but could have the BAHA implanted.  At 5 month post op, I was not ready for any more surgery but am annoyed with not hearing in my right ear.  I was wandering how the sound bite worked and if you found it successful/  Tweety/ Nancy

Nancy,  I'm sorry! I didn't response your post. I hope it is not too late. Yes, I tried the SoundBite, and I posted a review a year ago when I was finishing my trial. I copied it and I paste here below. Please let me know if you have further questions.

"My experiences during this time with the SoundBite are as follows;

IN QUIET CONDITIONS:

-   I have noticed that speech recognition is almost perfect on both sides in quiet environments. I originally thought I didn’t need a hearing aid in these kinds of environments but after trying the SoundBite I noticed a difference, the voices and sounds are much clearer.
-   Definitely helps with the directionality.
-   I can hear even the quietest sounds, for example, when someone is whispering on my deaf side.
-   While I am watching TV and someone is talking to me on my good side I can still hear the TV, which was a problem without the device.
-   If I am chewing while watching TV (i.e. crackers or something crunchy) I can still hear the program, without the device I would sometimes have to stop chewing in order keep from missing something. It would seem that the SoundBite filters the sound of chewing.
-   If I fall sleep over my AN side (while wearing the SoundBite) I don’t have feedback.
-   I can wear a helmet and ride the motorcycle without any problems. I don’t get any feedback or discomfort.
-   I can wear hats or beanies without any complication.
-   When my husband is seated next to me, he likes to caress (by rubbing) my shoulder. Without the device, if he rubs my shoulder on my good side the sound would sometimes annoy me to the point where I would have to stop his hand. When I wear the SoundBite it does not bother me, I guess because I have hearing on both sides and my brain doesn’t concentrate on only the sounds from my good side.
-   It is more pleasant to attend a lecture, everything is clearer.
-   I can hear the noise of my rubbing fingers in my deaf side.
-   If I lay down over my good side while wearing the device I can still hear.
-   I can speak on the cell phone using my bad ear but sometimes I experience feedback.
-   I don’t have feedback when someone gives me a big hug.

IN NOISY ENVIRONMENTS:

-   It is very helpful in the theatres; I can hear on my deaf side, when someone is whispering in the next row. I can also hear my husband commenting about the movie when he ends up seated on my deaf side.
-   It helps in restaurants, I am able to hear what the waitress is saying and I am able to hear the person seated on my deaf side.
-   While attending a concert (Metallica :-O ), I had problems holding a conversation while they were playing (I had an ear plug in my good ear) but my husband said that even for him it was next to impossible.
-   At the supermarkets or grocery stores, as I have mentioned before, I consider my hearing to be about 55% of what it would otherwise be on the deaf side when wearing the SoundBite. I don’t know why but it seems that the sounds in supermarkets and grocery stores are just weird that way.
-   Walking on streets with traffic and talking with someone on my deaf side is not a problem.
-   When washing dishes while wearing the SoundBite, the sound of the running water from the faucet is less distracting, especially while holding a conversation with someone.
-   I have noticed that the sounds of the ambulances or police cars are not as annoying while wearing the device, without it those sounds drive me crazy.
-   The other day I heard a noise while driving my car which I could not hear when I took out the device. When I asked my husband to check the car he was surprised that I could hear the noise at all. It turns out the noise was not that loud and was coming from the tire in the back.

GENERAL COMMENTS:

To wear the SoundBite is simple; the ITM (In The Mouth) is easy to wear and does not affect your speech or eating. It is not visible when you are smiling.

The BTE (Behind The Ear) is almost unnoticeable, the sound tube is transparent and thin and the part which goes behind the ear is small.

The doctors at Sonitus told me that the final device will be improved in both design and functionality. As I have posted before, in my 30 day follow up appointment I received a new ITM (I think it is part of the study plan). The new ITM battery has been lasting a minimum of 5 hours and I am told that by the time the final device is ready for market it is expected to get up to around 7 hours.

Cleaning is easy, just rinse the ITM with water or clean with dental cleansing wipes (the ones used for retainers). The BTE is just cleaned as needed with a Q-tip.

I am very pleased to have been part of this trial and to have been given a chance to try out such a promising device. This device continues to give hope to a huge group of us with SSD who are waiting for something non-invasive. I am glad that the doctors are working on improving the lives of people like us with SSD."

All best,
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.

CoachDJ

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #208 on: April 03, 2011, 05:41:34 pm »
This is all very exciting news, my doctor here in Arkansas is checking to see when the soundbite might be available to all of us.  He talked to the manufacturer and felt confident that when it is available that insurance will cover at least some of the cost.  Keep the updates coming folks!

DJ

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #209 on: April 03, 2011, 07:10:53 pm »
Thank you for this update.   I can't wait to get fitted and back to the hearing world again.
Mei Mei
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