Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 210232 times)

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #240 on: July 28, 2011, 03:04:38 pm »
Dear Ms. Wang,
As of now there is no preauthorization.  We are following the guidelines from the company.  Irrespective of insurance coverage the patients are responsible for $1500 first.  If you are concerned, understandably so, about the coverage, you can wait till the insurance company creates an authorization for this device.  That is why we have a pilot study so Sonitus can submit all the authorization requests to the insurance at the same time and make a case for approval.  If you would like to wait till insurance company approves the device we should hold off submitting your case to them.  Please also wait to see Dr. Singer for now since he is paid from the $1500 you pay, through Sonitus.
 
I think this device would be very helpful for you but it would be safest financially to wait the few months and receive authorization from the insurance company.  You would still be responsible for the $1500 from my understanding.
 
It was great meeting you in person and thank you again for the thoughtful gift,
Thank you,
Ashkan

>>> Seroun Wang <seroun@gmail.com> 7/27/2011 4:51 PM >>>
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Dear Ashkan,
I will continue with the pre-authorization process myself and need
you, the audiologist to forward my clinical notes including audiogram
to both Sonitus and United Healthcare's  Pre determination Care
Coordination Dept, without your cooperation my self driven Pre
authorization is handicapped.   I already have the reports called in
by my doctors (Primary Care, ENT and Nurse Practitioner).   I will
speak to the Predetermination office often and expect that approval to
come through before my Monday, August 8 appointment with Dr. Singer.
If it is not approved, I promised to cancel the appointment with Dr.
Singer.   I didn't know this was a Pilot Study.  Be that as it may, I
am helping  Sonitus by being the first one to get pre authorization.
I am helping Sonitus and I need their coordination so that this can
happen quickly.   I am also sending them patients such as Kristin who
had originally intended to go to Pittsburgh.

The number for Predetermination is:  1 866 297 9393 for calling in the
report which the person on the phone said would be quicker than faxing
a report.   If you do not want to call  in the report, then just fax
your supporting notes to  pre determination  fax 866 756 9733.

I will check in with them daily to make sure all the requests have been filed.

It was wonderful meeting you and your staff yesterday.

Sincerely,
SMW
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 #241 on: July 29, 2011, 05:17:32 am »
Mei Mei,
Your story is extremely helpful to those of us who will follow.  I have been playing phone tag with Dr. McKenna's assistant.  I had email responses from Ashkan and called Boston's Children Hospital to ask if I could become a patient.  They are only providing services for pediatric patients at this time.
I will continue to pester Mass Eye and Ear.  As soon as they are a SoundBite provider, I will begin the pre-authorization process with Harvard Pilgrim Health Care.
Good luck with your pre-determination, and thank you.
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 #242 on: July 29, 2011, 07:27:19 am »
Yes, Nancy.   Don't let them bully you around with this contract.   It's all wrong.    We can just pick up our money and take it to TransEar.   If you do TransEar, then go directly to Tennessee for the fitting.   I can meet you there and we can do the fittings on the same day.   Doing a TransEar fitting elsewhere is rolling the dice as far as i'm concerned.

Bottom line, when it comes down to the money, take care of yourselves and don't be a giraffe sticking your neck out!  I know they have a good product but they are handling the marketing wrong and we ANers are probably their number one target population.   For what I am doing for them, they should PAY ME the $$$$7,000.

I'm confused and frustrated and annoyed.   They are calling it a pilot and I wasn't told that when he emailed me to make the appointment with his secretary.   He said that precertification is not part of the plan for now.   If it is a pilot then they should be paying us instead of us paying them.   They wanted my credit card ok'd for $750 to start and they are confident that it would be approved.   If they are confident then why don't they get it precertified like BAHA does?
I guess you saw all of my emails to them and the other doctors.   I'm taking charge and doing the pre-certification myself since they won't do it.   Then I will be the first person to get precertified to lead the way for the others on United Healthcare.   I am lucky to have had the nurse case manager who encouraged me to do this and just SAY NO to Sonitus' laziness.   I putting the documentation together.   I've already sent them a long letter to start the precertification comparing it with BAHA and last night I printed out several pages from the Sonitus website to the pre certification office.    I'm doing them a big favor and showing them how to do it.   They just don't get it.
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

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #243 on: July 29, 2011, 07:38:59 am »
Dear AN Friends,
I just sent this to someone involved with Sonitus:

I have begun a chat about the Pilot Program at Sonitus.   I'm telling everyone to hold off until they do their own pre-certification since Sonitus won't help.   It's the wrong way to proceed and everyone in the private chats to me agree.  We'll just have to wait until it gets more established.  The AN patients have gone through too much prior to becoming Single Sided Deaf.   I'm as confident I'll get pre-certified because for the first time in over 30 years I am doing my own pre-certification and I've had many needs over the years.
Take care and hope to meet you when I come to LA in 2013 for the Acoustic Neuroma Conference sponsored by HEI.

http://www.anausa.org/smf/index.php?topic=10753.240

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

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #244 on: July 29, 2011, 04:12:23 pm »
Hi!
I just got off a call from Anne, a Sonitus Customer Service rep.   She was returning my call and that was so long ago, I don't remember why I called.   It must have been about where to go to get the Sound Bite.   So I told her the story from this week and that I was not willing to go forward with a Pilot program and she corrected me and said she wanted to clarify that and that it was a Pilot Launch...so now we are parsing words.   I felt like i was talking with President Clinton.   I told her I was sorry I sent Kristin there who is in a rush to get the Sound Bite and probably signed all those papers that I signed but crossed out the part about payment on my credit card and wrote in "pending pre-authorization".   I wanted all of you to know that Yes, they said they are pretty sure your insurance will pay for it so they are only asking for $1500 up front and they expect the rest to be paid for by our insurance.   Have they read all 10,000 of your insurance policies.   I DON"T THINK SO!!!   Don't sign anything until the proper steps have been taken to get this funded.   We're not buying a cucumber chopper, dicer, slicer on Home Shopping Network here.   We're signing up to roll the dice and pay $1500. bucks bring home our toys and then find out after a year of appealing that they will be nice to us and work out a nice payment plan that in my estimate will take 6 or 7 years to pay off and by then this Beta version device will be into five more advanced models than our year one pilot ancient one.

So that's the picture, my AN friends.   These are very muddy waters and I care about all of you so Watch and Wait as they say and get the pre authorization.   Then and only then do you buy the product.   Remember, you are in control, not them.   They are a new company and are trying out how we feel about them, they are protecting themselves which is fine, but we have to protect ourselves.   We've been through too much.   I told Anne that they are not ready to go to market yet because they have not ironed out all the wrinkles.   They are not ready for prime time.

Hugs to you all AN SSDers!
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

Jim Scott

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #245 on: July 29, 2011, 04:23:41 pm »
Hi, Mei Mei ~

I've been following your recent posts on this thread and I wanted to let you know that I admire your astute handling of the Sonitus situation.  Suffice it to say that I agree with your concerns and the steps you've taken to protect yourself financially.  You've prudently put aside your eagerness to obtain the Soundbite device and allowed your good sense and healthy self-protection instinct to guide you.  I think your comment to the Sonitus customer service rep was spot on.  The company has a way to go.  Right now, I could see some potential customers getting trapped, inadvertently, into a multi-thousand dollar debt that they never expected.  Ouch!   

So, well done.  I hope this can eventually be straightened out in a way that allows you to obtain the device without being obligated for it's full (unaffordable) cost. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mei Mei

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #246 on: July 29, 2011, 04:53:43 pm »
Thank you again, Jim for your support.   I let her know I was talking for all AN Forumites and that they are commenting in private messages that they don't want to proceed without Pre-cert.    I'm now 62 years old and have been to many hospitals and had to order devices for myself and my family and the provider always did the pre-certification.   This is the first time in all these years that I've had to initiate with the insurance company which shows that Sonitus' mind is only on itself and not the patient so buyer beware.   Anne was listening and summing up and then she said I am going to tell them that you're main concern is the pre authorization piece .... there was me smiling on the other end ...  DUH!  That's not a little piece. I didn't say it, but I was certainly thinking it.  I've been a CRA prior to my teaching days and worked on large clinical trials at NIH and three different pharmaceutical companies.   I've worked on small ones and big ones.   You do site visits for supporting documentation with errors on the EKGs changing the drug levels to the FDA and find major flaws by the labs running the support studies and they do these site visits sometimes after the documentation is submitted.   You tell the president and he doesn't care because it's already been submitted.  There are a lot of people doing sloppy work out there and Sonitus is one of them.   They need to work out the plan, talk it through and talk with patients like Arasha and others to find out what's important, but certainly isn't the credit card important to all of us?    That reminds me, I'd better call AMEX and change my account number because now they have it on the forms I quickly filled out and crossed over putting in "Pending Pre Authorization".   
Have a great weekend!
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

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #247 on: July 29, 2011, 07:57:32 pm »
Alternatively you can always go to TransEar which doesn't require a dental device.   Some people get coverage for it and some do not.   They have their act together as to pre certification assistance:

http://www.transear.com/

Homework 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

Denise S

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #248 on: July 31, 2011, 12:32:49 pm »
Mei Mei, that is SO nice of you to keep everyone updated on this info!!  I am bummed it just wasn't easier & working out for you!

My motto is:  The ONLY way anyone "may" be eligible is IF their insurance covers hearing aids, otherwise I think it will be more of a denial thing.

Good Luck
Denise
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 #249 on: July 31, 2011, 04:49:34 pm »
DEAR Denise,
I'm sure it will come to pass.   The problem with TransEar is that on their website they use the word Hearing Aid and on the Sonitus website they use the word device.    I will apply to both and whichever gets approved first is the winner.   I'm sorry that Sonitus did not help me in filing a pre authorization.   They want a big business but want me to do the homework.  How annoying...
Hugs,
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

Denise S

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #250 on: July 31, 2011, 05:28:03 pm »
DEAR Denise,
I'm sure it will come to pass.   The problem with TransEar is that on their website they use the word Hearing Aid and on the Sonitus website they use the word device.    I will apply to both and whichever gets approved first is the winner.   I'm sorry that Sonitus did not help me in filing a pre authorization.   They want a big business but want me to do the homework.  How annoying...
Hugs,
Mei Mei

Very true Mei Mei...annoying!

Well best wishes in whichever!  I read somewhere that Transear has a 30 day money back thing, so hopefully that is true and you should know within 30 days (if you try it) if you like it or not  :)
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 #251 on: July 31, 2011, 06:40:47 pm »
Thanks, Denise.   The bottom line is not to be desperate as we are fighting hearing loss which is permanent and not a tumor which was in our past.   The hearing loss we can take our time with and wait for the best time to buy.

Be patient...I guess that's why they call us patients.
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 #252 on: August 10, 2011, 02:28:59 pm »

Mei Mei,

I have read carefully your posts and I think you are a very wise person. Thanks for all your valuable comments about the insurance stuff. To hear better is important for me and to take care of my money is essencial as well. All these years after my AN surgery (almost 4) it has been just a "spending money time" I have had to treat my facial palsy, migraines, balance, hearing, and the list goes on... money, money and more money (consider that I am a homemaker and a College student).

Your experience helps me to be aware because I just received this email from Sonitus:

"I hope this email finds you well and that you are enjoying your summer!   I wanted to follow-up with you regarding the letter that you received a few months ago and subsequent phone conversation you had with our customer service representative.    We are planning to have the devices ready by mid-late September, in order to get your devices in the queue for the manufacturing process we need you to have an updated hearing test at Dr. Murray’s office in San Jose.  We also need you to fill out the ordering and insurance paperwork so we can send a claim to your insurance for the device.

We have set aside Monday, August 22nd at Dr. Murray’s office Camino ENT (they moved 4 miles away from their old office- see address below). 

Please let me know what time between 8:30 and 5:00 PM works for you.    It will take about 45min for the appt and paperwork."
 

I am very glad that I have read your posts and I will be very carefull when the insurance issue comes. I have my appt on the 22nd, let's se what happens. I'll keep you all posted.

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 #253 on: August 10, 2011, 02:50:05 pm »
To Arasha and all of you,
Just don't sign anything that makes you vulnerable.    The Customer Service person named Anne or Anna I forget now, said it is a pilot.  Did I know the definition of a pilot.  I said to myself she doesn't know that I conducted pilots for people in the next town from them.   So I let her talk on and on and she said this is not a research pilot but a launch pilot.   I called my friend at Mass. General Hospital and she couldn't stop laughing for several minutes.   It was OK because by then I needed some comic relief.   She said she wanted to know what my main issue was at this time.   I told her it was that they were not getting involved with the pre-authorization or certification.  She's going to get back to me in 2 weeks because she's on vacation.   So there's no one there running the store while she's away.

Bottom line is that medicine and devices are all about money so you have to take care of YOURSELF and not them.

My friend at Columbia University said he wouldn't get involved in a Pilot.   Let them and some guinea pigs work things out first, and don't get involved in the Beta version.   If after a year you don't get approved for insurance coverage, then you're stuck with a $7,000. bill that they said they would work out a "nice" payment agreement.  That's where I stopped and said Whoa!.   I don't want a payment agreement.   The doctor here said if I was going for pre-authorization then I should cancel the appointment I had with the dentist.

I had the secretary at the TransEar inventor audiologist's office in Tennessee call in to my insurance and she said they wouldn't cover a hearing aide for me but only for my minor children.   At least this office is helping me with the insurance component for TransEar.  I liked that about them.   

Sonitus in my opinion is not ready to go to market and I think she agreed with me.   Waiting a year or two isn't going to hurt you.

Take care,
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

Smithair

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #254 on: August 11, 2011, 08:34:50 am »
I had an appointment with a neurotologist yesterday who will be a provider for the Sound Bite.  His information was not on the Sound Bite website yet, but when I called the Sound Bite headquarters they provide me with the information.   

After 3 hours of testing and discussion with the doctor - he informed me the cost would only be around $1,800.00.  Not the $7,000 mentioned in some of these posts.   I have another appointment next week with the Sound Bite people who will be in the doctor's office training his staff - I have a growing list of questions to ask. 

I called 2 of the providers listed on the website and asked about cost - they both indicated $1,800 - range. I specifically asked "for everything - total cost"  they indicated "yes".    When I called Sound Bite they indicated around $6,500.  Odd!   All explained due to the newness of this device and how it will be categorized that insurance is not currently covering. 

I had hemangeoma surgery 6 weeks prior to my AN surgery and the scar is in the area where a Baha would be implanted...after 2 brain surgeries and 2 pieces of titanium - I'm very interested in other options. 

Will report back after my appointment next week. 

Becky

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