Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 195093 times)

KKorkut

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #285 on: October 30, 2011, 08:47:28 am »
Hi Mei,
I don't have private insurance, I have only government insurance currently. I don't think that any private or government insurance in Turkey will cover Soundbite yet. If Clinical trials are free of charge and does not need any insurance I can attend a clinical trial, but I think that Sonitus can find enough patients in US for clinical trials. They won't need me now :).

Lack of hearing on one side is a very important limitation in my life, so cost is not a high priority criteria for me. If Soundbite works well and will improve quality of my life paying a few thousand dollars for this is not much.

Best Regards,

Koray

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #286 on: October 30, 2011, 09:20:44 am »
Looks like there is a new soundbite that is coming out on the market very soon.


Sonitus Medical Inc. announced that it has received an additional FDA clearance for its SoundBite Hearing System. The FDA 510(k) clearance for Conductive hearing loss is the second for the SoundBite prosthetic device and marks another significant milestone for the company. Expanding upon the FDA clearance for the treatment of Single Sided Deafness attained by the company earlier this year, this second indication for use in treating patients with Conductive hearing loss further establishes SoundBite as a non-surgical and cost-effective alternative to bone anchored surgical implants

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #287 on: October 30, 2011, 10:30:07 am »
You can feel that you hear well with Soundbite but in order to make a correct evaluation you must also try to hear without Soundbite in the same environment. If you realize that you can not understand the conversation from deafside when you don't wear the device but when you wear it then you began to understand we can say that soundbite is useful.

Koray,

Thanks for your input and recommendation.  I will do that!, not only once, I will try different restaurants and other noisy places, and I will share my experiences. You can count on it, I promise!

Have a beautiful 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 #288 on: October 30, 2011, 10:41:54 am »
Thanks. Do you know if the soundbite might have any affect on reducing ear ringing or white noise coming from that ear?

Phillies,

In my case, it did not reduce my tinnitus. That constant annoying ringing remains the same  :(.

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.

CHD63

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #289 on: October 30, 2011, 02:53:07 pm »
Since tinnitus is a brain thing, not an ear/hearing thing, I don't think any hearing device has any benefit to reduce tinnitus.  Bummer of a deal, but if anyone has had relief from tinnitus through a hearing device, let us know.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #290 on: October 31, 2011, 10:37:33 am »
I agree with you Clarice.    There are a lot of claims.    I used to be in this business so I am very careful.    When I talked with Sonitus the woman said I sounded like I knew what I was talking  about.  She said she would call me back in two weeks when she got back from vacation.    That was in August.   I used to write applications for the FDA.   It's a big business and you have to be patient.

The Clinical Trials are too far from my house to get involved otherwise I would give it a try.
Koray is welcome to stay at my house if something opens up in Washington.   I too need my hearing.   My neck is killing me and so are my shoulders.   I've developed cervical dystonia that my health insurance has approved Xeomin (Botox) every three months.   They are OK to pay for the symptoms but not the deafness that is causing the neck pain as I all day long turn my head to the right to hear what people are saying from my left good ear.    I'm very sure the United Healthcare will not pay for the device and that is a big mistake.    They don't see the forest before the trees.    I will make an appeal to their decision.    Sonitus was not willing to help me with this because I wouldn't sign the form allowing them to bill me after the year was up.

I just don't want to fork out $7000 for a device still in Clinical Trials no matter what excuse they are giving you....it is an excuse.    Don't buy a BETA version.    Just wait.   Buyer beware.

Please everyone, they are not finished getting this ready for market, so hold off until it has been out for awhile like the TransEar.

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

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #291 on: November 01, 2011, 01:06:50 pm »
Is there any trouble wearing the soundbite with sunglasses?

Ross

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #292 on: November 01, 2011, 03:14:45 pm »
Gloria - I've been checking the posts so often hoping to hear more about your experience with Soundbite.  As I've been in a lot of large gatherings these days, I find that my SSD is more and more a liability for me and keeps me from being able to participate actively.  Just the other week I was at a school fundraiser and the inability to carry on a simply conversation had me depressed the rest of the weekend.  Since BAHA doesn't help in noisy situations, it seems that Soundbite is the way to go.  So...now that you have the device, how's it going?  Am I making the right assumption about Soundbite helping with background noise?  For instance, if I'm at a large work function with 100 people in the room, is there hope that with Soundbite that I'd be able to hear someone on my bad side?  Don't keep us in suspense! :-)

And to everyone else, thanks for all the sharing that goes on in this forum.  It truly is a lifeline and I so greatly value your sharing your experiences.

B, Ross
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #293 on: November 01, 2011, 06:50:52 pm »
Is there any trouble wearing the soundbite with sunglasses?

Phillies,
NOT AT ALL, you can wear glasses, sunglasses, hats, helmets, etc. The BTE device (Behind The Ear) is tiny.  I wear glasses almost all the time at classes at College.  No feedback either.

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.

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #294 on: November 01, 2011, 07:20:05 pm »
Ross,

Thanks for your questions, please be patient. Today is my fifth day wearing the SoundBite.  I can say that I understand you about how we feel when we are not able to hold a conversation in noisy places, sometimes I was feeling completelly deaf because all that I could hear was a mixture of disturbing noises.  I am trying to wear the SoundBite in different environments: grocery stores, lectures, restaurants, theater, walking, talking with my husband and son while the tv and radio are on, etc. etc. I have a list to go, and my time is limited, but I will do my best.  I am taking notes about the results.  Please give me at least one more week and I will post as best as I can.

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.

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #295 on: November 01, 2011, 07:46:53 pm »
Yes, it is very isolating to have this SSD.    We all know where you are at Ross.

Thank you so much for the time you are spending on our behalf.  I wish I could try one.   You have the perfect list of our problem area.   I hever hae trouble at home, except when Im in my father's room and the phone rings, I can hardly hear it ringing from the next room.    In addition to the restaurant noise, I also have trouble in the grocery store speaking with the cashier.   Supermarkets are really large and the acoustics are bad for us.

Thank you for all you are doing for us.
Sincerely,
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

CHD63

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #296 on: November 02, 2011, 07:47:19 am »
Gloria .....

I am curious about something.  You said " I am trying to wear the SoundBite in different environments"  Does this mean you only wear it part of the time?

I have a Ponto bone-anchored hearing device and my audiologist carefully explained to me that our ears do not hear, our brain does.  Therefore, she said the more you wear your Ponto processor, the more quickly your brain will adapt to understanding and using the bone conducted sounds.

If I understand it correctly, since a SoundBite is a bone-conducted hearing device ..... just using the teeth to conduct instead of the skull ..... would it not be the same situation of needing to train the brain in various situations?  ....... just asking.

I basically put my Ponto on after my shower in the morning and leave it there until I go to bed at night.  I have had mine for three months now and have adapted very well to most situations.  Extremely noisy environments are still an issue, but I think even normally hearing people have trouble in those situations so I'm not sure it is fair to blame it on hearing loss.  My biggest problem is the horribly loud tinnitus that seems to crank up even more anytime there is other ambient noise ...... even background music, humming fans, etc.

The SoundBite sounds like a very promising alternative to the bone-anchored devices.  It is wonderful to finally have some options!

Best wishes.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #297 on: November 02, 2011, 09:09:06 am »
Clarice,

Thanks for your input.  I think I did not specify well in my last post.  I wear the device, first thing in the morning, right after I take the shower and brush my teeth, and I take it out to put in the charger before I turn off the light to go to bed. What I meant is that I am going to different places just to test the hearing.  As Koray recommended, when I am at certain places, I take the BTE (Behind the Ear device) out for a moment in order to test the hearing with and without it.
Imagine, I was waiting for the SoundBite for so long that I don't want to be without it, not even when I am at home.
Clarice, thanks for helping me to clarify this point.

Have a beautiful day,
Gloria

« Last Edit: November 02, 2011, 09:16:26 am 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.

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #298 on: November 02, 2011, 01:05:55 pm »
Ross -

it is a myth that BAHAs don't help in noisy situations.

Those are the BAHA processors of the past.  Both Cochlear and Oticon have made major strides in this area when creating their new processors and things will only get better down the road.

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

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #299 on: November 03, 2011, 10:49:40 am »
Sorry to bother you with another question but how is the piece that goes into the ear canal? Does it feel like you are wearing an ear plug? Does it feel comfortable?