Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 194521 times)

Arasha

  • Full Member
  • ***
  • Posts: 141
  • El camino es largo y dificil pero no imposible.
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #330 on: February 13, 2012, 05:55:32 pm »
Hi everyone,

A new SoundBite user sent me a message regarding the feedback issues while wearing the SoundBite.  I thought it would be helpful to share my comments with you guys.

I remember the day when I got fitted the SoundBite, after the consultation I went to my car and  I turned on the radio to find out how comfortable it was to hold a conversation with my husband while the radio was on. The first time I opened my mouth to say something I had a loud feedback, actually I couldn't hold a conversation because the feedback was so annoying, I immediately went back to the office (I was at the parking lot) and I explained the audiologist about this issue.  She took the BTE and programed the volume of the microphone a little lower (it took abt 2 minutes).  After that I have never experienced feedback again.

I would recommend to the new SoundBite users to do this test before leaving the doctor's office because the audiologist told me that other users returned to her office for the same reason. If you don't have someone inside the car to talk to, you can turn on the radio and try to sing  while the radio is on, you should not have to experience feedback.

I hope this helps.

All best,
Gloria
« Last Edit: February 13, 2012, 06:01:08 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.

Smithair

  • New Member
  • *
  • Posts: 12
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #331 on: February 16, 2012, 09:45:30 pm »
I had the same experience. 
3 cm AN. Translab Feb 2011 House Clinic. Brackman. SSD. Ongoing balance issues  Soundbite Feb 2012 Private pilot returned to flying Jan 2012

Arasha

  • Full Member
  • ***
  • Posts: 141
  • El camino es largo y dificil pero no imposible.
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #332 on: February 17, 2012, 12:18:27 am »
I had the same experience.

Becky,

Congratulations for your "new friend", the SoundBite. Is how I call to my device  :)  Did you get fixed the feedback?

All best,
Gloria
« Last Edit: February 17, 2012, 12:20:58 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.

Smithair

  • New Member
  • *
  • Posts: 12
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #333 on: February 17, 2012, 11:11:26 pm »
Yes. Technition kept adjusting and now no problem.  Today was my 2 nd day and only one time did I hear a feedback as I turned my head sharply.   I absolutely love this device.  Driving in the car listening to music, laying on the couch watching tv on my good ear, i even can hear phone conversation on the deaf side although not as clear as normal, i can understand  I can't believe the quality of life it has restored!  It is my friend indeed.   

Becky
3 cm AN. Translab Feb 2011 House Clinic. Brackman. SSD. Ongoing balance issues  Soundbite Feb 2012 Private pilot returned to flying Jan 2012

Arasha

  • Full Member
  • ***
  • Posts: 141
  • El camino es largo y dificil pero no imposible.
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #334 on: February 21, 2012, 07:01:09 pm »
Hi Everyone,

I just watched a good video report on the SoundBite in San Antonio-Texas. Here is the link:
http://www.kens5.com/news/Soundbite-uses-vibrations-through-the-teeth-to-help-the-hearing-impaired-139445003.html

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.

Mei Mei

  • Hero Member
  • *****
  • Posts: 1278
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #335 on: February 21, 2012, 11:52:52 pm »
In my former life, I was involved in Clinical Trials and Pilot Studies.   Several of the Clilnical Trials were halted after the next morning when it was announced that a researcher put out statistics from Italy that the drug or device was proved helpful or hurtful to the patients all over the United States that this drug or device was either effective or not.   It is unethical in medical practice to continue a Pilot Study or Clinical Trial at the same time as selling it to the market.  UNETHICAL.   We always halted the Clinical Trial or Pilot Study when the evidence showed that the device or drug were shown effective or ineffective.    I will not share with you the drug or device because that is not part of the question.   What is part of the question is that When I went to GW to get fitted with the Sonitus Sound Bite, I was given a form to sign saying that they would work one year on getting my  health insurance company to pay $7000 device for one ear and after one year, they would start working out a nice arrangement with me to bill me the $7,000.   That's when I pulled back my pen and called my insurance company and the nurse said NO NO NO  don't proceed until everything has been pre approved.

Then besides my being part of a Pilot Study, I found out that Sonitus was holding Clinical Trials throughout the US for their device and at the same time asking me to be responsible for $7,000 should insurance not pay.  I know my insurance will not pay.   The Doc who happened to be Dr. Monfared formerly of Stanford and now of GW said that he does not do pre-authorizations.   What was I to do.  I always pre-authorize everything.   I was doubly upset that Arasha who started this post said that she was getting the Sound Bite for Free because she was part of the original Clinincal Trial.   So they are handing out free devices to people that post on this Forum and to people on the Clinical Trial but for people who live in places like Washington, DC, they are asked to sign a paper that they will pay $7000 if their insurance doesn't pay.   So, the bottom line is that some people are getting this device for free and others are being charged $7000 for the same piece of Beta stage device.    When I realized that, I stopped communicating with these people that do not follow portico;s of ethical medical professionals.

I will never go to Sonitus in spite of the fact that Cleveland Clinic has put them in the number one spot of all devices for 2010.    They are just not following the ethical protocol that I was trained under and find the best way to go considering the people of the United States and beyond who are thinking of getting this Beta Stage device.   I am telling you if you do not get this for free, then back down and wait until they have a better product that you are ready and willing to pay for.   Don't bite now.  They are not ready for market if they are still running Pilot Studies and Clinical Trials.   Please believe me that I know what I am talking about.

I myself am going with Dr. S in Johnson City, Tenn because he was willing to get on the phone and explain to my insurance company how I needed the TransEar.  He was the inventor of the TransEar and willing to get on the phone and encourage me to come down to Johnson City Tenn and also talk with United Healthcare about my hearing disorder due to the ACOUSTIC Neuroma.   I cannot forget Dr. Schumacher's earnest interest in my situation.   Sonitus did not do that for me because they are smack in the middle of Pilot Studies and Clinical Trials.    Please  believe me, they are not ready for the market.   You all should be angry.

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

Mei Mei

  • Hero Member
  • *****
  • Posts: 1278
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #336 on: March 20, 2012, 08:14:33 pm »
Dear All,
I saw my nurse practitioner and doctor today and she agreed with me that I should not have to pay for a hearing device that makes me a participant of a Pilot Study and at the same time is in NIH Clinical Trials.   No matter how good they say it is, it is not ethical to ask you to pay for this item.   It is still a Beta product in development.   Nothing more and nothing less.   Don't let them make you sign on the dotted line that you will pay for this item.
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

Archer

  • Jr. Member
  • **
  • Posts: 77
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #337 on: March 21, 2012, 07:04:09 am »
Not to be argumentative but my thought is if it works, I need it, and would have to pay for it I would pay for it rather than not get it and still need it.  That's if I could arrange the dollars needed.  For me it would come down to the value of being able to hear what I am missing.  Priceless in many instances.

That being said, I would make every effort to have it paid by insurance but I would have it in any case.

Ross

  • Jr. Member
  • **
  • Posts: 53
  • Ross
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #338 on: March 27, 2012, 03:52:41 pm »
Went to Boston Medical Center today and met with audiology staff and a representative from Sonitus. I'm pleased to report that I'm moving forward with the Soundbite device. Next step:  get my dental impression. Should have the device by mid-May. I'm so excited about this.

On the insurance front, I'm told that they're classifying Soundbite as a prosthetic device vs. hearing aid and hence it should get covered. I'm crossing my fingers. Even so, I'm thrilled to be out of the gate on this.

Thanks to Gloria and others for sharing their experiences. Made me a very knowledgable consumer having had some background on others' experiences.

Best, rjo
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

Larry

  • Hero Member
  • *****
  • Posts: 1464
  • Scallywags Rule
    • Chronologer of the PBW
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #339 on: March 27, 2012, 08:01:42 pm »
Gloria,

I am thrilled for you re the soundbite. personally, i want them to get their beta product into normal production so they can then offer the product down under.

Mei Mei,

I understand where you are coming from and agree 100%. The product is beta and still has a distance to go yet to iron out all the kinks. I think it is wrong to charge people for it. If they want to charge outside of the trialists then perhaps they should offer it for say $1,000 as a beta product and offer very limited support with it.

keep the comms going on this thread it is very useful.


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

Ross

  • Jr. Member
  • **
  • Posts: 53
  • Ross
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #340 on: March 27, 2012, 08:55:48 pm »
I met with the audiologist team at BMC and their team is ready to go.  I don't understand what people mean by "beta." The Soundbite is in full production. Just like the iPhone, there will always be enhancements along the way. Sonitus is promising patients that when the next version is available, it will upgrade devices under the warranty.  Since the warranty is for three years, there's lots of room for improvements and upgrades.

Additionally, they are claiming they are having success with insurance companies because the device is a prosthetic vs. a hearing aid. Insurance companies are covering that even in states that are more restrictive.

Those who are part of trials always benefit. Unfortunately the only people who can participate in those ongoing testing of upgrades are people who live in CA where Sonitus is located.

I'm going for it.
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

Ross

  • Jr. Member
  • **
  • Posts: 53
  • Ross
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #341 on: April 02, 2012, 04:02:14 pm »
Okay. I was so positive in my prior posts, but after reading about Phonak CROS, I'm wondering whether I should try that out first. Anyone out there that has experiencing evaluating Soundbite vs. BAHA vs. CROS?

Looks like there is no downside of trying CROS as they allow you a trial period before committing. You can't do that with the others for obvious reasons. Would love to know if anyone can say definitively that one "hears" better with Soundbite or BAHA over CROS.

Thanks.
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #342 on: April 02, 2012, 05:17:03 pm »
Ross, you might find this helpful http://www.anausa.org/smf/index.php?topic=10207.0

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

Ross

  • Jr. Member
  • **
  • Posts: 53
  • Ross
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #343 on: April 12, 2012, 09:05:20 am »
Gloria et. Al, Sonitus says the ITM piece stays charged for 6-8 hours. What has been peoples' experiences?  Closer to 6 or 8?

I calculated the difference of the 4 hours. If you start at 8 am, the 6 hrs per device gives you till 8 pm. But 8 hrs gives you till midnight. That's a big difference if you're going to dinner at night, etc.

Thanks.
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

Arasha

  • Full Member
  • ***
  • Posts: 141
  • El camino es largo y dificil pero no imposible.
Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #344 on: April 13, 2012, 01:01:29 pm »
Gloria et. Al, Sonitus says the ITM piece stays charged for 6-8 hours. What has been peoples' experiences?  Closer to 6 or 8?

I calculated the difference of the 4 hours. If you start at 8 am, the 6 hrs per device gives you till 8 pm. But 8 hrs gives you till midnight. That's a big difference if you're going to dinner at night, etc.

Thanks.

Hi Ross.
In my experience, the battery of the ITM unit lasts 8 to 8 1/2 hours. I normally use only one unit during the day, because at the time that I need to replace the ITM I am already at home, sometimes I do, sometimes I don't.  When I plan to be out of home for more than 8 hours I carry in my purse the replacement ITM. That is not a problem.

Yesterday I had a follow up appointment, and it seems everything is working well.

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.

 


anything