Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 195105 times)

Kaybo

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #270 on: August 28, 2011, 06:58:52 pm »
Thanks, Gloria!!   ;D

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #271 on: August 29, 2011, 07:36:27 pm »
Thanks for the answers Gloria.  I think I understand things a little better now - and the link really helped. 

Appreciate your responses,

Jan
« Last Edit: August 29, 2011, 07:38:11 pm by leapyrtwins »
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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #272 on: October 20, 2011, 12:32:46 am »
Hi everyone.

Just a quick update.  I haven't got my SounBite yet .  I was supposed to get it on Mid/September ,but at the beginning of September I got an email saying that I will be able to have my device on Mid/October.  Just today I received a call from Sonitus in order to schedule my appointment to finally get my SoundBite.  I will get it on Friday, yes, this Friday!.  Thank God!. Two more days... I can't wait.

I'll keep posting,

All Best,
Gloria
« Last Edit: October 20, 2011, 12:35:39 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.

KKorkut

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #273 on: October 20, 2011, 02:40:05 am »
Hi Gloria,

I am waiting for your comments about the final product in exciment. You said before that you will get Soundbite in mid September, so I was checking this site everyday in order to get some good news from you. I can wait a few days more in this case.

Please share your experiences as soon as possible with us.

Thanks for every bit of information you shared with us until now.

Best Regards,

Koray Korkut

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #274 on: October 20, 2011, 09:00:08 pm »
Sonitus is currently still doing Clinical Trials in several states.    I would not commit to buy as yet if they are still doing Clinical Trials and Pilot Studies.   See link below:

  mei mei

http://clinicaltrials.gov/ct2/show/NCT01445977
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

johnsather

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #275 on: October 23, 2011, 08:11:17 pm »
thanks, Gloria.  I'm new to the board, and I have been also reading about Soundbite.  No provider yet for the Chicago area, but hopefully soon.  It looks very promising.  Heard it's about $7000 right now.  TransEar is half that. 

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #276 on: October 24, 2011, 03:01:29 pm »
Yes, TransEar is half the price and has been on the market for a long time.   My experience recently with them is that Sonitus is not ready for market.   They are asking for us to agree to pay $7000 and also said it was a trial.   If it is a trial we shouldn't be paying.    Then also at my local group a woman shared a link that I posted above...a few days ago to NIH Clinical Trials for Sonitus.   They are doing NIH Clinical trials and also selling them for $7000.   I hope this is not a Beta version like the Barnes and Noble Nook I bought last year.   

They shouldn't be in Clinical Trials and selling them at the same time.
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 #277 on: October 29, 2011, 02:25:55 pm »
Hi everyone.

Just a quick update.  I haven't got my SounBite yet .  I was supposed to get it on Mid/September ,but at the beginning of September I got an email saying that I will be able to have my device on Mid/October.  Just today I received a call from Sonitus in order to schedule my appointment to finally get my SoundBite.  I will get it on Friday, yes, this Friday!.  Thank God!. Two more days... I can't wait.

I'll keep posting,

All Best,
Gloria

Did you get tour soundbite yet? How is it working for you? If you don't mind me asking, how much did it cost? Did insurance pay for any of it?

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #278 on: October 29, 2011, 04:20:09 pm »
Hi Everyone.  On my previous post I said that I was about to get my SounBite on Oct. the 21st, but I got a call  from Sonitus the day before and  they re-scheduled my appointment because my device didn't arrive yet.  So, my appointment was yesterday and finally I GOT MY HEARING SYSTEM! YES!!!! Oh my God I am sooo happy to experience my new hearing !!. Yesterday I wore it only 6 hours because I had to go to bed. Today I am wearing it since I woke up.  I will wait few more days to post accuratelly my experience.  So far.... I love it.  The new design, the louder hearing, the tiny microphone, etc.  When I was talking to my husband, he said that my voice is quieter than it used to be, WOW!  I didn't know that I used to speak loudly.

Phillies,
Regarding to your question about the cost of SoundBite, I copy here below what I posted few weeks ago.

"total amount that this Clinic is charging for the SoundBite is $6,800.00. They require from the customer the amount of $750 and the rest should be covered by the insurance. I was told that other offices are charging 1500, 1800 and so on because of the costs that they have to go through the process, for instance dentists costs, etc. In my case, because I was part of the study they will cover the  value of 750 . THANKS SO MUCH SONITUS!.  Regarding the balance of  $6,050.00, although I  filled out all my data about my insurance  I was not required to give any credit card information because Sonitus will claim to my insurance and they are pretty sure the insurance company will cover the balance. I asked  what about if my insurance refuses to cover, they answered that in that worst case scenario Sonitus will cover the claimed amount, but they reaffirmed me again that Insurance companies will pay. Sonitus is proceeding on this way with all the persons involved in the study. I feel so happy. My SoundBite will be ready on mid September. I am counting the days J "

I hope this help.

All best,
Gloria
« Last Edit: October 29, 2011, 04:24:53 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 #279 on: October 29, 2011, 04:53:30 pm »
Sonitus is currently still doing Clinical Trials in several states.    I would not commit to buy as yet if they are still doing Clinical Trials and Pilot Studies.   See link below:
http://clinicaltrials.gov/ct2/show/NCT01445977

Mei Mei,

I was curious about the trial issue, and actually this was the first thing I asked to the doctor during my appointment yesterday.  She explained to me that they are doing many trials around the USA, not because there is something wrong with the SoundBite, but because the great results they have obtained with the product, they are doing more researches to develop upgraded devices in the future, you know, same as when Apple developed Iphone1, then Iphone2, Iphone3, etc. or like Baha, not sure what model they started with but since they began to sell implants, various other models have came to the market.  This makes sense to me.  In fact, Sonitus offered me to be part of a new clinical trial to help them to develop future models and I accepted; so now I am part of a new trial for one more year  :)

All best,
Gloria 
 
« Last Edit: October 29, 2011, 07:11:58 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.

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #280 on: October 29, 2011, 07:26:26 pm »
Thanks for the update. There does not seem to be very many doctors in the US who are currently working with Sonitus but I'm sure more will pop up in the future. Closest one for me is George Washington University in DC. It's about a 2 1/2 hour ride on the train. Any idea how many trips I may have to make down there is I decide to go this route and not wait for a more local doctor?

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #281 on: October 29, 2011, 07:46:58 pm »
Any idea how many trips I may have to make down there is I decide to go this route and not wait for a more local doctor?

Phillies,

I went two times; in the first one I got  my audiology and dental exams and in my second visit I got the device.  It was fast because everything was done on site. I am not sure if this would be the same for you, I guess each office may have their own way to do it I 'd suggest you to ask directly to your provider.

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.

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #282 on: October 29, 2011, 10:11:45 pm »
Thanks. Do you know if the soundbite might have any affect on reducing ear ringing or white noise coming from that ear?

KKorkut

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #283 on: October 30, 2011, 03:51:40 am »
Gloria thanks for the update.

I will be very happy if you share your experience in noisy environments like restaurants. You can try to remove ear piece and wear it again in these kind of environments to evaluate the difference. When I was trying CROS devices I was very happy when I realized that I can hear comfortably with it in a noisy restaurant. But then I removed the device and I realized that I can hear even better without it because the restaurant was not noisy enough. When I tried the device in a really noisy restaurant I didn't understand any words from deafside. So I concluded that CROS devices are useless in noisy environments ( I only need hearing aids in these environments ). 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.

Sorry, I am an computer engineer and make a lot of tests on software and devices. I am approaching this subject in the same way :).

Best Regards,

Koray Korkut

 

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #284 on: October 30, 2011, 06:25:25 am »
Dear Koray,
Don't be sorry.   You point of view is very valuable and I will take it to heart.   Have you thought of trying the SoundBite on the NIH Clinical Trials that I posted earlier in this thread?

When they asked me to sign a consent to bill me after one year of appealing to insurance I withdrew my application to have a fitting and decided to go for the TransEar.   Already I have had a denial and am reappealing as an insurance agent told me to do.   She said that United Healthcare is very difficult.   Since you have foreign insurance it might be worth a trip over here to one of the NIH Clinical Trial sites to make your tests before you spend the $7000.   I know about Clinical Trials as I used to work on them at NIH and a pharmaceutical company.    You just don't want to pay for the first edition.   Similar to the iPod and iPhone, last year I bought a Barnes and Noble Nook for my 97 year old father and two weeks later they came out with the color version and now they have the touch screen.   My father never uses the original one I bought him.  It is a dinosaur.

GW wanted my credit card and said I would have to pay.   My nurse practitioner case manager said do not move forward unless it is preapproved even if they say that they are sure that it will get paid.   Get whatever they say to you in writing and don't get burned.   GW said outright that they do not do pre approvals.

http://clinicaltrials.gov/ct2/show/NCT01445977

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