Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 204293 times)

Denise S

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #255 on: August 11, 2011, 03:05:10 pm »
Becky, please keep everyone posted what it all comes down to.  Gee for $1,800  I (along with others) may be able to 'out of pocket' that versus other options or amounts if insurance don't cover (like mine  :( )   Sure makes ya wonder on such a price difference though, hey?

Denise (MI)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #256 on: August 11, 2011, 04:25:10 pm »
Hi everybody,
I see all your differences in stories about the Sonitus.   Some sites ask for $1500 like my GW facility and others say $1800.   There is no consistency which underlines my feeling that they are not ready for market.   Ready for market means that they are giving out the same story to everyone.

The other day the TransEar owner and inventor/audiologist Dr. Schumaier called me personally and said he would call the pre-certification office himself.   What kind of down home treatment is that?   He must be a wonderful person and I am so looking forward to meeting him once the appeal process is over with.   I sent him the appeals form from United Healthcare who initially refused me because for some reason they said they only would give hearing devices to minors.   There is no minor on my policy.   This is so frustrating.   I sent him a copy of the appeal forms and am waiting to hear back from him.   If for some reason you cannot do BAHA like me and my Occipital Neuralgia, TransEar is a great choice.   The fitting has to be done with the inventor himself otherwise you are bound for failure like so many people on the Forum have reported giving up and returning it.   Don't give up and go to the horse's mouth, namely Dr. Schumaier.   The office is there to help you do the pre-authorization which is most of the battle.   Sonitus told me straight out that currently they do not do pre-authorizations.   Pre-authorization is the only way to go, so do not, I repeat, do not proceed without it.

I really appreciate TransEar being there in a time of need.

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

Patti UT

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #257 on: August 20, 2011, 02:19:17 pm »
I just finished up with Transear and I have to say they are so awesome to work with. I got my first one back at the end of Feb.  I had probelms with it and they kept remaking it (4x) to try and get the right fit and extended my trial time each time they remade it.  Unfortunately in the end, my ear canal is weird enough that getting the right fit just was not going to work out for me and just sent it back for a refund which I got right away. .  Also, I know the device was working as it is intended, I could tell that when plugging my good ear while watching TV or talking with someone, but out in everyday life, in the car etc,  it just did not seem to really be aiding me and the fit was uncomfortable so I could not wear it for more than a few hours.  They also just came out with a new transducer that puts out allot more power and really improved the loudness of what you are hearing from it.  This company will been over backwards to try and make this thing work for you.  I would highly reccommend giving it a try.
  My audiologist is now offering Soundbite.  I got to see one.  The mouth piece looks to be pretty cumbersome and you wear it on your hearing side. You have to take it out when you eat which removes the benefit when your eating with people and trying to talk.  Also for me, my AN side does not have any moisture so eating on that side in order to keep from removing the soundbite is not an option for me. My audiologist told me the cost was going to be around 8k, but for a time (she didn't know how long) the company was offering it for $1500.00 and they would bill the insurance the difference, but if insurance did not pay, they would eat it. They are doing this just for a while to get their product out there.  That was her story about the cost.  Hope that helps some of the confusion.

patti ut
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #258 on: August 25, 2011, 05:19:05 pm »
  My audiologist is now offering Soundbite.  I got to see one.  The mouth piece looks to be pretty cumbersome and you wear it on your hearing side. You have to take it out when you eat which removes the benefit when your eating with people and trying to talk.  Also for me, my AN side does not have any moisture so eating on that side in order to keep from removing the soundbite is not an option for me. patti ut

Patti, I just read your post and I would like to let you know that when I was wearing the SoundBite I did not have to take the ITM (In The Mouth) out of my mouth to eat. The device DID NOT interfere while chewing or talking, actually that was one of the best things about the device, to be able to hear while eating. I believe it is designed to work in this situation. Nevertheless, there was one case in the trial where one person had to remove the device every time she was eating because she had an "alveolar ridge" and the ITM did not fit well, so the ITM broke every time she was chewing. In my personal case I can tell you that the ITM did not interfere at all while eating.

In addition, I was told that the ITM device can be worn on both sides of your mouth, depending on your teeth conditions. In my case, I wore it on my non-hearing side (AN side).

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.

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #259 on: August 25, 2011, 10:23:24 pm »
Okay, I'll bite (pun intended).

If you can eat with the SoundBite in your mouth, how do you clean it?  Doesn't it get "gunked" up with food?  And what about drinking hot and/or cold beverages?  Will that affect the longevity of the device?

Also, isn't this awkward? 

I'm not sure what a SoundBite looks like, but I'm picturing something like a retainer or a mouthguard worn at night by those who grind their teeth (guilty as charged).

Am I way off base here?

I just can't imagine this.

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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #260 on: August 25, 2011, 11:30:31 pm »
Hi all.  I went  to  Camino Ear, Nose & Throat Clinic in San Jose to my appointment for the SoundBite and here is my report!.

The Clinic mentioned above is one on the list of providers. I filled out the paperwork which contained also all my data about my insurance, then, I had the audiogram test. All went well. I did not have to go through the dentist’s processes, I assume because I already had them when I was in the trial. 

The 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 feel sooo excited !!!!!

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

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #261 on: August 26, 2011, 02:59:59 pm »
That sounds great and there are certainly benefits to being on the clinical trial.   They are grateful to you for helping them out.   My United Healthcare Policy said they won't cover it but was welcome to write an appeal and they will consider it.   I am having three of my doctors write a support letter to go with the appeal of Medical Necessity.

Looking forward to your comments on how the fit works for you.
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

Patti UT

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #262 on: August 27, 2011, 07:49:30 pm »
thanks Arasha,
  All you posted sounds like a  little more positive than I had thought.   My adiologist said the 1500 was not refundable if the Sundbite does not work for you unlike the transear that I got a full refun all but $100 for the fitting etc.  I guess it really boils down to each device worls differently for each person.  I'm going to watch Soundbite and see how it goes, maybe try it a bit later after it's been on the mkt a while longer.
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #263 on: August 27, 2011, 08:14:55 pm »
I agree.   I am on the Watch and Wait with this one.   My experience over the past few years has taught me to watch and wait.
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 #264 on: August 27, 2011, 11:02:21 pm »
I agree.   I am on the Watch and Wait with this one.   My experience over the past few years has taught me to watch and wait.
Mei Mei

Mei Mei and Patti,
I think you guys are right; considering that SoundBite is a new product, "Watch and wait" is a wise decision. When finally SoundBite is on the market I hope more users can share their experiences and feedbacks in this forum, so you guys can have a better idea about the device and later on take the right decision.  I do not know about the refund amount if you would like to return the SoundBite, but I DO know that if you are not happy with TransEar you can return it within 30 days and the company refunds your money.  I decided to keep my TransEar because the ENT told me that the more I wear it the more my brain would adjust, unfortunately it didn't adjust after several months, but that is just my case. I have read very good experiences from others whom are happy with TransEar.  Everyone is a different world with unique conditions, what could work for me could not work for others and viceversa. This forum is a very good tool that addresses many different issues and help us to clarify and learn about them, and that is why I love ANAUSA forum. Even though I do not post very often I like reading it every time I have the chance.

I am very happy that we have now another option that could help us to improve our hearing. I cross my fingers for the insurances to cover the SoundBite, so more people can have the benefit to get it, and I am very confident that someday (not so far away) someone will invent something that make us possible to recover our natural hearing. I pray for it!

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.

Kaybo

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #265 on: August 28, 2011, 05:28:53 am »
I am very curious also about the questions Jan posed, I also have it pictured as a retainer like device so it's hard for me to imagine eating with it in place...inquiring minds want to know!  ???

;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 #266 on: August 28, 2011, 09:14:45 am »
Thanks, Kaybo.  I'm very curious to hear the answers to my questions too.

I was wondering why they were just glossed over  ???

Can one of you familiar with the device answer them?

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

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #267 on: August 28, 2011, 02:36:14 pm »
Dear All,
I don't have the energy to try one and then the other.   I was disappointed about the Sonitus people going to market before they were ready and wanting us to foot the bill while they are still researching so I hoofed it off to TransEar's inventor and was very please with his business model.   I've asked for a letter for my United Healthcare appeal, but he never answered, but never mind...he said he would call a precertification number and I am satisfied with that.   I have support letters coming from my neurologist who is giving me Botox shots in my neck and shoulder because I've developed cervical dystonia from turning my head so often for this SSD.   My ENT at Hopkins is writing a medical necessity letter and so is my nurse practitioner in neurology at Georgetown.   I think with three letters of medical necessity, I should be fine...at least I am hopeful.   Sonitus annoyed me because they put the onus all on me should the pre authorization fail.  I am taking the bull by the horns and making sure it happens.   Don't stick your neck out and sign a paper that says you'll be responsible if your insurance company doesn't come through for you.   You need more help in the process.   I am so disappointed in them not coming forward to help and asking me to sign on the dotted line to make me responsible.

As a recent retiree on disability, I don't have the extra $$$ to follow through on this.  I am also taking care of my 97 year old father that costs us $5000 a month for in home care.   Can't bend any more.   As Jim says, we can do without, at least I can, but if insurance will come through that will be delightful.

I will inform you when I hear about the United Healthcare appeal decision.  I will appeal again and again until I get what I want.  Just don't want to fork over the bucks that Sonitus wants and a payment plan that is reasonable is not an option
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

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #268 on: August 28, 2011, 05:02:47 pm »
I am very curious also about the questions Jan posed, I also have it pictured as a retainer like device so it's hard for me to imagine eating with it in place...inquiring minds want to know!  ???

;D
Hi Kaybo, thanks for the reminder.  Jan, I will try to answer your questions:

In another occasion I posted my comments about the cleaning issue, so I paste it here again:

- "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.  …
...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.”


- Wearing the device the first few days was a bit uncomfortable, but I got accustomed after the first week, the side where the ITM was located it was little sore at the end of the day, but again, the discomfort experienced was gone in the second week

-Regarding the part of “gunked up with food”  It is pretty much the same concept like when I was wearing braces in the past, no bid deal ,

- I am not an expert, so I can not answer the question about the longevity vs drinking hot and cold beverages.

- I don’t know what do you mean with “awkward”. For instance, many people consider awkward to wear dental braces, while others like them. The purpose of wearing them is what matters.

- There is a website where you can see how a SoundBite looks like, the link is http://www.soundbitehearing.com/

Again, please note that I am posting according to my experience. I am not trying to sell the product and I am being honest as much as possible.

All best,
Gloria
« Last Edit: August 28, 2011, 05:07:11 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.

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #269 on: August 28, 2011, 05:34:48 pm »
Thank you so much for this input, Arasha.   I really appreciate all the time you've put in for our benefit.

Now I have to figure the whole thing out.

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

 


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