ANA Discussion Forum
General Category => Hearing Issues => Topic started by: Arasha on October 15, 2009, 03:16:12 pm
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Hi everyone,
Yesterday I went to my follow up appointment with the otologist. He told me about "SoundBite" a non-surgical, removable hearing device for SSD that transmits sound via the teeth. This new product is not in the market yet, but could be ready for sale on 2010. My doctor told me that SoundBite will be much better than Baha and TransEar.
Here is the link http://www.sonitusmedical.com/product/
I cross my fingers,
Gloria
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Hi Gloria,
Thanks for the post, sure looks promising.
Don
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I contacted about the trial but they responded & said that it was limited to the San Francisco area...bummer....
K :-\
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Hi Kaybo,
I contacted also about the trial by email and just few minutes ago I received a call from SONITUS, they gave to me an appointment for next tuesday in order to see if I qualify for the trial. I live in San Jose Bay Area.
I will post the results,
Gloria
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Interesting...do let us know how it goes next week...though I've ruled out getting a BAHA probably, this might be something I'd think about...
I'm curious as to whether it will help w/ directionality - isn't the new BAHA supposed to help w/ that issue?
Cindy
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This looks so great. Thanks for the link, Gloria. There have been several people despondent about their SSD over at the hemifacial spasm list, so I posted the link there.
I hope you qualify for the trial.
Sara
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Very interesting link - this works on bone conduction just like the BAHA does.
As a BAHA wearer, I have a few comments - and I want to stress that these are my opinions/concerns only - and everyone is different.
I chose the BAHA because I didn't want to wear something behind or in my ear - this has a piece you wear behind the ear. If you don't mind wearing something in or behind the ear, why not just get a TransEar or a conventional hearing aid? Why wear something near the ear and in your mouth?
Call me skeptical, but I'm leery of anything containing batteries going into my mouth - hermatically sealed or not.
I also wonder about two pieces being involved - what is the potential that one of these pieces will malfunction or not work properly?
Does the "retainer-like" device cause the wearer to talk funny? And as you age, and potentially have a need for dentures, does that mean you can't continue to wear the mouth device?
One of the nice things about my BAHA is that the piece in my skull is permanent. And if new technology becomes available, or other companies besides Cochlear manufacture BAHA devices (case in point, Oticon) it's easy to make a switch to the latest and greatest.
And as I age, if the hearing in my "good" ear diminishes, I just get a higher powered processor.
That said, if this invention works it would be great for those with SSD who might be interested in it. Like the BAHA, it wouldn't be for everyone, but to each his own.
I hope they pick you for the trial, Gloria. Please keep us posted - I'd love to hear how this works.
Jan
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That kind of stinks since they had no way of knowing where I was from - they just flat out told me NO!! :-[
K
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Thx for the update.
I'm always looking for optiions that are non surgical (i don't want to see another surgeon!)
Not sure about the 2 devices (I'm with you Jan0 but hopefully this progress will lead to wireless bluetooth hearing with no devices near the head at all, just need to carry a small device in a pocket - nice to dream.
Laz
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Maybe Gloria was the last person they needed for the trial, Kay. I'm sorry they told you no. I would vote for you.
Sara
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This is an interesting-looking device, though it seems a bit cumbersome.
My question re: the retainer-like device -- can you wear it while eating?? If this was mentioned in the link, I missed it. Seems as though it would sort of defeat the purpose if it needs to be removed then, so maybe it can stay in during meals. You would probably need to give it a very thorough cleaning after eating!!
It will be good to learn more about this as it develops ... but I think I'll stick with my BAHA.
Catherine (JerseyGirl2)
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I'm curious as to whether it will help w/ directionality - isn't the new BAHA supposed to help w/ that issue?
Forgot to say, that yes, the new BP100 has improved directionality (compared to the Divino and the Intenso). The new Ponto by Oticon is supposed to also have improved directionality - I haven't tried it yet though, so I can't confirm that.
Jan
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Wow. Interesting. What will they think of next? Thanks for sharing this Gloria. I look forward to hearing about your trial of it.
I have to admit, I'm a bit skeptical of the whole thing - can't imagine it being better than the BAHA or TransEar - perhaps the sound quality might be a little better, but I would not be able to tolerate the in ear part - which is why I went with the BAHA. I also like the fact that I only have to worry about one device, rather than 2 ( I tend to lose things!). And I wonder about how it would affect your speech too. I never had braces or a retainer, so I don't know if those things are noticeable while in your mouth, but I know with my facial nerve issues and post- 7/12, I have to really concentrate on making sure my speech is not slurred - I'm sure anything attached in there would make it worse.
What I do like though, is the rechargeable battery! Too bad they haven't figured out how to do that with regular hearing aid batteries.
Keep us posted!
Lori
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I just wanted to get in on the free trial - especially since the BAHA demonstration wasn't very good (however, the more I think about it, the more I think that those reps didn't try very hard). I wondered about the speech thing too...& the eating. I got the impression that you wore something BEHIND the ear, not in. I don't want anything in my one good ear!!
K
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Hi all ..... thanks Gloria for sharing the link! Interesting.
I read that SoundBite website and the four accompanying links at the bottom. Here's a paragraph from the "Technology" link:
"SoundBite is designed to detect sounds using a small microphone placed within the open ear canal of the impaired ear. The nearly invisible, thin tube microphone is attached to the transmitter unit worn behind the ear. This microphone placement in the pinna or outer ear is intended to allow the SoundBite hearing system to capitalize on the natural acoustic ability of the outer ear to capture and direct sound into the open ear. SoundBite system hearing is intended to provide clear, high fidelity sound and is designed to restore normal hearing to patients."
So to answer several previous questions .... there is not only a behind-the-ear transmitter to the tooth thingy, but also an in-the-ear microphone.
Some of you, as I am, are curious about this device while eating. One of the places where capturing conversation is most difficult for us SSD-ers is at restaurants. The website doesn't mention anything about eating while wearing. I'm guessing that, like most oral appliances, it's left in while eating .... but do you also capture increased sounds of chewing? Since the teeth are connected to the jaw bone .... and the jaw bone is connected to the skull bone .... and the ...... well, you get the idea .... I can't imagine NOT hearing all that noise in my mouth.
One last thing .... the baha post is permanently connected to skull, as Jan mentioned, thereby creating a direct path for sound vibrations. What ensures that SoundBite's retainer thingy is always tightly against the teeth, making for that all-important contact for max vibration transmission?
So, any of you that do try this device .... please let us know answers from the SoundBite experts .... as well as your thoughts (which might be more important).
Thanks ;D ;D ;D
Greg
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Good point, Greg... I don't think I need to hear myself chew! :D
Lori
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I just wanted to get in on the free trial - especially since the BAHA demonstration wasn't very good (however, the more I think about it, the more I think that those reps didn't try very hard).
Sister Kay -
I was told by someone at the symposium (the Cochlear reps?) (Dr. Penzak in his speech?) that the longer you are SSD, the longer it will take you to notice a difference when wearing a BAHA. You might want to find a doc who will let you take a BAHA demo home - like Greg did (just don't drown yours in beer ;) ) - so that you can wear it for a few days to see if you notice a difference.
Greg and Lori -
good points about this new invention and eating - didn't think of that. Also, forgot about the "nearly invisible thin tube microphone" - wonder how sturdy that would be? I know that lots of folks who had the original TransEar (before the upgrades) had trouble with the wires attached to it - they kept needing repairs. I'm imaging that this thin tube microphone might constantly need repairs; but I could be wrong.
Jan
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I was told by someone at the symposium (the Cochlear reps?) (Dr. Penzak in his speech?) that the longer you are SSD, the longer it will take you to notice a difference when wearing a BAHA. You might want to find a doc who will let you take a BAHA demo home - like Greg did (just don't drown yours in beer ;) ) - so that you can wear it for a few days to see if you notice a difference.
I totally agree with the statement that the longer you've been SSD (particularly if it's been very gradual prior to surgery instead of going from excellent hearing to immediate SSD as a result of AN surgery) the longer it takes to notice a difference when wearing a BAHA. If it's a case of years of gradual decline, or years of living with SSD after surgery, your brain has had ample time to adjust and adapt to the SSD. I can only speak for myself (I was in the gradual decline category), but it took me considerably longer than a few days to appreciate my BAHA. My brain has gradually adapted to this "new way" of hearing and my recommendation for those of you who don't experience that immediate "BAHA moment" is to stick with it, keep wearing it ... and improvement will come!
Catherine (JerseyGirl 2)
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I thought that we were flying into Houston and then driving to the family's land at Toledo Bend for Thanksgiving so I would not be able to arrange a trial. Now we will be in Houston the whole time so I need to see if I can persuade a Dr. there to let me check one out. I guess I will start with my FIL's audiologist since I have no connections with anyone there. I need to jump on that now that I know I will be in the city the whole time!
K
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I just wanted to chime in on the Jan's comment (taken from a doctor at the ANA symposium) about a long-term SSD person receiving a BAHA and not noticing an immediate improvement in hearing.
Although I don't have a BAHA, I did lose hearing in the AN-affected ear very gradually, probably over a 7-8 year period. I either ignored it or when I admitted the loss, attributed it to aging and noise exposure in my youth. I never had it checked until I developed other symptoms, such as the loss of taste and accompanying (30 pound) weight loss as well as an intermittent stabbing pain on the 'AN side' of my head. My point is that because of my very gradual loss of hearing in one ear, I was able to adjust to the hearing deficit over time, making the loss manageable, on a practical basis. My hearing immediately post-op was identical to my hearing pre-op...I remained totally deaf in one ear. Thus, I haven't seen a need to obtain a BAHA Well, at least not yet. I would hope that as time passes and technology improves and advances, if I ever decide to obtain any kind of hearing aid, they'll be very advanced and easier to wear and use. This latest invention seems to have some inherent flaws but it may be a prototype for better things to come in the hearing aid field. One hopes, anyway.
Jim
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Jim,
I agree with your point of view, as you'll notice in my post that appears a bit earlier in this thread. My hunch is that if you tried out a BAHA right now you wouldn't be particularly impressed. If you got one and wore it on a regular basis, I think you would definitely notice an improvement over time -- probably not the kind of "BAHA moment" that many users mention, but just a growing awareness that it does indeed help and that you can certainly tell a difference when you have it on.
That being said, I'm not at all suggesting that you go out and get one -- sounds as though you're doing wonderfully well without any device! -- but if you do ever decide to try something, just be patient and give your brain ample time to get used to yet another way of processing sounds.
Catherine (JerseyGirl 2)
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I was sad at the Symposium that I didn't have a "BAHA Aha" moment but I guess it has just been too long for that...
K ;D
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Kay -
don't be sad. As Catherine said, I think you've just gotten so used to being SSD over the years that logically you wouldn't have an immediate BAHA Aha moment.
I think the demo @ Thanksgiving would be a great idea. If your FIL's audiologist can't help you out, try the Cochlear website - they list docs who do BAHA surgeries from all over the country under "clinics".
Good luck :-*
Jan
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Gloria,
Good luck with your trial. As a BAHA user I have the same concerns and questions Jan, Lori and Greg brought up. The one thing that is a real turn-off to me is the idea of having a battery in my mouth and the potential for real problems with that. Also, like Jan, one of the reasons I chose BAHA over TransEar is that I can't stand having anything in my ear, period. I hope these concerns have been addresses and thatyou like it, but if not, there are other options as you know.
Kay - Good luck with your BAHA demo -- I hope you're able to set something up. Even though you might not have that initial "Aha" moment, if you give it a chance, I think you'll really like it. I look forward to hearing how it goes.
Wendy
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OK - dumb blonde moment #2,459,345 - I went on the web site to check out audiologist in the Houston area and what did I find?? THAT THERE IS SOMEONE IN MY TOWN THAT DOES BAHAs!! Can you believe it? I know that I can't! I guess that when I was thinking that I absolutely didn't want to have surgery again (after the T3 adventure), I was checking into the TransEar and there are no Dr.'s here that do that. Anyway, i have an appointment on the 28th to see if the Dr. thinks that I can benefit from a BAHA - if so then hopefully I will get to try it for a few days!! I also have to contact insurance & see if they will pay for it. The office lady said that Aetna pays for it >50% of the time but <90%...
I'll keep you posted!!
K ;D
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Hi Everyone;
As I promised, I am updating this thread. It seems that the doctors at SONITUS MEDICAL really know what they are doing, very professional!!!. After I filled out all the paperwork (clinical history, data, etc), they gave me an audiology exam and then the consultation with the investigator physician who explained to me all about the process and the device. After my initial examination, and based on my paperwork, he told me that I QUALIFIED and that I was a perfect patient for the trial !. The next step was to go to get the dental exam, the dental impressions and the x-rays all of which was done on site. They told me that my trial device will be ready in about 2 weeks, consisting of both the oral appliance and microphone component. (The entire system.) I had the opportunity to see the new device and it looks promising.
I have been making a list of all the concerns, opinions and expectations that we as SSD-ers have, it is mostly a compilation of all the questions that people on this forum have made about the SoundBite. I expect most of them I should be able to answer from my own experience after wearing the new device.
Thanks to all of you for your comments,
Gloria
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Hi Gloria,
Exciting news to be sure. I look forward to hearing how you like your Soundbite device.
Wishing you luck, and good hearing,
Wendy
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Thanks for the update, Gloria. I'm anxious to get your impressions (no pun intended) of this new device. I just wish you'd demo'd the BAHA or considered the TransEar first so you had something to compare it with.
Kaybo -
glad to hear there's a "BAHA doc" in your area. Hope things go well with the demo ;D
Jan
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That's great, Gloria!
Can't wait for the report on how it works!
Lori
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Thank you for this info. I need a non-surgical method for SSD because I had blood clots in my lungs after knee replacent surgery in 2007. I will definitely keep an eye on this.
Grace
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Way to go Gloria, in getting things moving quickly! I'm ditto-ing Lori's and Jan's (what a punster)comments on hearing what you think. Please also ask if any east coast locations might be in that company's plans for SoundBite trials.
Happy chewing! ::)
Greg
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Kay .....
I was concerned that you did not have a BAHA aha moment. :-* I am not SSD but have been wondering if those of you who are long-term SSDers have a situation in which your brains have adjusted/compensated for unilateral hearing for so long that it is a brain perception issue. Could the brain be re-trained to hear/perceive sound through bone conduction, but it would just take longer than someone newly SSD?
I say this because I was fitted with a hearing aid over a year ago in my AN ear only. It was so uncomfortable (on several fronts) until several earpieces later and many adjustments in sound levels that I did not wear it consistently until about three months ago. Now I rarely go without it, except when sleeping, because I can hear so much better. At first I kept telling the audiologist that I could hear no better and it was just an aggravation. I think it simply was retraining my brain to accept the change in sound input.
Just a thought .....
Clarice
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I need a non-surgical method for SSD
Grace -
have you looked into a TransEar? Those who have them really like them - and they are non-surgical.
Clarice -
your response to Kay is right on the money. What you are suggesting about retraining the brain is mainly the issue behind Kay's lack of a BAHA aha moment, the way I understand it.
Jan
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I was concerned that you did not have a BAHA aha moment. :-* I am not SSD but have been wondering if those of you who are long-term SSDers have a situation in which your brains have adjusted/compensated for unilateral hearing for so long that it is a brain perception issue. Could the brain be re-trained to hear/perceive sound through bone conduction, but it would just take longer than someone newly SSD?
Oh, yes. This has certainly been my theory since day one. I was expecting my doctor to tell me, "you need a hearing aid," instead of, "you have an acoustic neuroma." My hearing loss was very gradual -- over a number of years -- and I was virtually SSD before my AN surgery, to the extent that nothing sounded different to me after my translab procedure than it had for some time before. My brain had adjusted quite well over the years. I had the BAHA abutment surgery done at the same time as my translab and started wearing the BAHA sound processor a few months later. I did not have a "BAHA moment," but I was confident that it would help over the course of time, so I wore it faithfully all day, every day. My brain has now learned yet another way of hearing and my BAHA is a very big help.
In my case, it didn't happen overnight!! And I would imagine that many others whose SSD was gradual, or those who feel comfortable with their SSD even if it were sudden-onset after AN surgery, wouldn't necessarily experience that BAHA moment either.
Catherine (JerseyGirl 2)
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Kay .....
I was concerned that you did not have a BAHA aha moment. :-* I am not SSD but have been wondering if those of you who are long-term SSDers have a situation in which your brains have adjusted/compensated for unilateral hearing for so long that it is a brain perception issue. Could the brain be re-trained to hear/perceive sound through bone conduction, but it would just take longer than someone newly SSD?
I say this because I was fitted with a hearing aid over a year ago in my AN ear only. It was so uncomfortable (on several fronts) until several earpieces later and many adjustments in sound levels that I did not wear it consistently until about three months ago. Now I rarely go without it, except when sleeping, because I can hear so much better. At first I kept telling the audiologist that I could hear no better and it was just an aggravation. I think it simply was retraining my brain to accept the change in sound input.
Just a thought .....
Clarice
Clariice,
I had about 85% hearing in my AN ear prior to surgery and after surgery I became SSD. I tried the headband demo of BAHA 3 weeks after surgery and did not have a BAHA aha moment. Still adusting to SSD (it's been 9 months now). I tried the TransEar and it had no effect for me. Not considering either at this moment. I will say this though, of the two, I thought the BAHA had more of an effect than the TransEar.
Neal
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Great :-[ <sigh> something else for me to wish us Canadians had <big sigh again>.
Michelle
Not wanting the bi-cross! Holding out for something better!
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Jan:
Thanks for the clarification on TransEar! As much as I have seen it referred to on this website, I did not investigate or realize it was a non-surgical device.
When I contacted Sonitus about pricing, this is the reply I received:
Hi Grace,
Thanks for the inquiry. Our estimated price, once we receive our first FDA clearance (which we intend to be in mid 2010), will ultimately be determined by your doctor, but it will likely be in the $4,000 ballpark.
Regards,
Jason Shelton
VP Marketing
Sonitus Medical, Inc.
1825 South Grant Street, Suite 350
San Mateo CA, 94402
(650) 353-5827 - office
jason@sonitusmedical.com
www.sonitusmedical.com
Grace
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Grace -
I'd look into the TransEar, I think it's cheaper than $4,000 - but I could be wrong. Plus you only wear it in your ear - unlike this new invention that you'd also wear in your mouth.
Jan
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Hi All,
My apologies for not being as present lately--altho I do occassionally spy on everyone:). I am still amazed that life has been just swell since my surgery last May & very thankful.
I just had my consult at UCSF for BAHA & my doc told me they still needed a few more people for trials. He recommended trying this first before drilling a hole in my head! Which makes sense, & BTW, the BTE goes in the bad ear. I'm keeping my fingers crossed since I'm am North Bay of San Francisco. The only thing I am a bit concerned about is EMFs. I know they still say to stay away from electrical powerlines & the jury is still out on cell phone use & these AN issues. Hmm, I'll have to think about it more, WIFI in my head? Not sure if that is a good thing.
Re: the BAHA demo. I found it very hard to notice the difference. Of course they had me in a sound booth trying it on. I was finally SOLD when they put a plug in my good ear & whispered on my bad side. Now that was amazing! Afterwards, I took the BAHA off & kept the ear plug in--it was so hard & a bit frustrating to follow the conversation. If SoundBite doesn't work, I'm definitely getting the BAHA.
Carolyn
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Hi Gloria!
Just wondering if you've received your Sound Bite & what do you think? I went down last week & will be receiving my sample the beginning of Dec.
Look forward to keeping everyone posted on this new technology!
Carolyn
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Hi Carolyn,
I have the appointment to receive my Sound Bite on Wednesday the 18th, 2 more days. I am exciting !!
Take care,
Gloria
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Gloria and Carolyn -
please don't forget to give us your feedback on this. I'm very interested to see how you like it.
Jan
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My husband is very eager to hear how your trial goes. He is using a CROS now, but it looking forward to hearing about the Sound Bite. The technology sounds very promising and having the benefits of a BAHA without the surgery is exciting to think about. Best of luck to both of you.
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Hi everyone;
I GOT MY SOUNDBITE YESTERDAY !!!!!; please give me one more day to post you with details about this experience. So far, I can say it is MUCH...MUCH... MUCH... BETTER THAN I EXPECTED!!! (Considering the fact that I was a TransEar user).
I'll be back in a couple of days,
Gloria
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Gloria why the change from a Transear to the Soundbite?
Michelle ???
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Hi everyone,
I haven’t posted for awhile because I have been trying the SoundBite out in different places in order to come up with some more accurate answers of how well it works in a variety of environments. After 15 days of trial I can answer the questions that you guys were asking in this thread:
-ONE OF THE PLACES WHERE CAPTURING CONVERSATION MOST DIFFICULT FOR US IS AT THE RESTAURANTS, IF I EAT WILL I CAPTURE INCREASED SOUNDS OF CHEWING?
NOT AT ALL, you don’t hear sounds of your chewing.
-TWO PIECES BEING INVOLVED, WHT IS THE POTENTIAL THAT ONE OF THESE PIECES WILL MALFUNCTION OR NOT WORK PROPERLY?
Both pieces work together if one is not working, I don’t have “serviceâ€.
The battery of the ITM device (In The Mouth) is rechargeable, it runs out in about 3h30’ to 5 hours depending on how noisy or quiet the conditions are, In my case, I was trying in noisy places. Part of the overall solution is that they provide each person with two ITM devices so one can always charge while the other one is being worn, it comes with 2 chargers and they have utilize the USB interface so anything that can charge USB should (my words) be able to charge the devices. It comes with a wall outlet to USB adapter but you could just as easily use a utility outlet (cigarette lighter) to USB adapter for your car and presumably just plug it right into your computer. It takes aprox 1hour 10 min to recharge the battery.
The battery of the BTE device (Behind The Ear) runs out in about 12-15 hours, it is also rechargeable.
Both devices are easy to wear and easy to recharge.
-DOES THE “RETAINER-LIKE†DEVICE CAUSE THE WEARER TO TALK FUNNY?
NOT AT ALL, it doesn’t bother your speech; sometimes I forget I am wearing it in my mouth.
-AS YOU AGE, AND POTENTIALLY HAVE A NEED FOR DENTURES, DOES THAT MEAN YOU CAN’T CONTINUE TO WEAR THE MOUTH DEVICE?
I am pretty sure a user has to have the molars because the ITM it is held in place by the last upper molar on the AN side. The device uses bone conduction so I would think that it would have to at least attach to a tooth or perhaps dental implant in the bone (i.e. stud of some kind) but this question is best answered by a professional.
- DOES IT HELP WITH DIRECTIONALITY?
YES, IT DOES, not a 100% but it is helpful, the other day I heard the noise of a car coming next to my AN side and immediately I turned back to see in that side. I could recognize where my husband was when he called me in a grocery store.
- THE RETAINER –LIKE DEVICE- CAN YOU WEAR IT WHILE EATING?
ABSOLUTELY, you can eat what you want, I am able to chew gum.
COMMENTS:
The first days I was experiencing feedback and little shocks on my tongue with the battery of the ITM (like bubbles), not big deal, it disappeared after 4 days.
As soon as I put on the SoundBite my hearing changed totally, I can hear clearer, it gives me hearing in my AN side (through bone conduction) It seems about 85 % in quite ambiance and 55% in noisy conditions but that is just a guess. One thing I like is that the noises or voices don’t sound like an AM radio. Of course nothing is similar to my natural hearing but this is the closest I have come. When I lie down over my good ear and can still hear well.
I really miss the device when I am not wearing it; the difference is really impressive, I am not worried anymore about where to sit in a restaurant with people at the table. I tried it in a very noisy place, with many TVs on in different channels, music, with a lot of people talking, laughing and people at my table talking, I could hear both sides, that was so amazing!!! I could even hear my husband WHISPERING IN MY AN EAR (of course he needed to be very close to my AN ear), I just felt so happy.
I have been to a restaurant with a live band playing, grocery stores, malls, theatre, in the car with the radio on, etc, etc and I could still hold a conversation.
I was a TransEar user before and I can say what at difference. I kept my TE because I was told that the more I wore it the more I would acclimate to it and that the experience would improve but after 8 months of wearing it was the same and I finally gave up wearing it. Sometimes I could not notice the difference between wearing it or not. When I did wear it I tended to experience fullness and a decrease of hearing in my good ear. Unfortunately that was my experience with the TE, I heard comments that works great for other users.
One more thing; The BTE is automatic, meaning you don’t have to worry about making any level adjustments, etc.
I am told that this device should be covered by most insurance companies because it is not considered a “hearing aidâ€; according to the explanations of the inventors at Sonitus. Of course, your mileage may vary, but the point is that the insurance companies cannot hide behind the blanket statement “We don’t cover hearing aids†etc.
I should emphasize that these have been my own personal experiences to date with the SoundBite, I am obviously excited by my results but still wish to try and remain objective. It’s hard.
There is another person in this forum, which will have the chance to try the SoundBite within this week. Carolyn, please tell us your experience when you get it. I am sure the SSDrs will want as much consensus as possible.
Happy holydays to everybody,
Gloria
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The battery of the ITM device (In The Mouth) is rechargeable, it runs out in about 3h30’ to 5 hours depending on how noisy or quiet the conditions are,
The battery of the BTE device (Behind The Ear) runs out in about 12-15 hours, it is also rechargeable.
Gloria
I've been reading along in this discussion with some fascination, however the battery times listed here seem to be quite low. For me, I get up about 7am and then finally get home from work about 7pm and ultimately to bed by midnight or so... If I'm going out that night, I may not be ready to go to bed until 3am or so.. That's 17-20+ waking hours a day. With those battery life times, I would be changing devices or batteries (or doing without because I'm recharging batteries) multiple times during the day. That just not feasible for most people, including me.
If you have any kind of active lifestyle, you'd be hard pressed to make this a workable solution to wear most of the time.
I like your review and it's obviously very positive for you. I'm happy about that.. But, I would think that most of us that are looking for a hearing device would be looking for something that lasts longer than 3.5-5 hours at a time between charges.
Have I gone wrong somewhere in my thinking?
Regards,
Brian
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Gloria, what fabulous news! I know I am going to end up with some hearing device and this sounds so promising! Your feedback was great - do you have any idea when it will be available? I so wish they were also running a trial on the East coast. Hope springs eternal with SSD!
Cheryl
;D ;D ;D ;D
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I'm taking a number right behind Cheryl. This device sounds very attractive. Thank you for being a guinea pig for us, Gloria.
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Great feedback, Gloria! Glad to hear it's working well for you. Please come back and update us again as you continue to use it. Great for those who are looking for an "aid" to have another option...
Cindy
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I am very excited for you Gloria and of course a wee bit jealous. Not many options in Canada.
I kind of have to agree with Brian the life of the battery is kind of short. If this is a trial is this something you may mention?
Keep us posted I am very interested.
Michelle ;D
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I'm betting that just like cell phones and iPods, battery life for this device will improve as it develops. What a wonderful thing to have another option for SSD.
Sara
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Hi everyone,
Regarding the concerns with battery life, yes, it isn’t the best case scenario but you have to remember that battery technology is improving everyday and that the device will benefit from everyone’s battery research. The whole world is working on battery technology, every cell phone manufacturer, hybrid car maker etc etc etc. . Everyone is NOT working on SSD devices so to have a device that works well from an SSD perspective is pretty huge. Sure there are other devices but this one is non surgical which is pretty much the last thing I want after having my AN removed. Ugh. I can remember charging my cell phone throughout the day in years past, now I go days if necessary without recharging. This is only a trial device, judging from the fit in my mouth I could easily tolerate a larger battery size if it were presented as an option. I don’t doubt they have considered this but after all, why would they go through all that effort when their first objective would be to make a trial and see if it performs first?
Keeping with the cell phone analogies, does anyone remember the bag phone? Ha! How about the brick phone or even metal antennas on their home cordless phones.
To put it into perspective, a quote from their website:
“This system is currently for investigational use only with clinical trials now underway intended to support an initial filing for FDA 510(k) clearance to treat single sided deafness.â€
So as far as I am concerned it has no where to go but up, meaning it can only get better.
Cheryl, I will ask Sonitus about your question, I don’t know exactly when will they finally release the SoundBite.
Thanks for your comments,
Gloria
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Gloria -
thanks for updating us; this is very interesting and sounds like it has a lot of potential.
If it won't be considered a hearing aid, what will it be called in order to get insurance coverage? The BAHA is considered a prothesis; can this be termed one also?
The battery life is very short - I usually get about 2 weeks out of a battery in my Divino - but as others have pointed out there are sure to be improvements over time.
Being a BAHA user who is thrilled with my choice, I don't see any big advantages to this device - other than the obvious; not having a hole drilled in your skull ;D Which isn't a big thing to me - but I know it can be for others.
Your reports on directionality and performance in noisy and quiet settings sound similar but not as good as my experience with the BAHA - and I don't hear sounds like through an AM radio either. As far as being self-adjusting to the environment, the new Cochlear BP100 and the Oticon Ponto Pro (BAHA devices) do that also. I also chose the BAHA because I wouldn't be wearing anything in or behind my ear - it's invisible to others - and I really like that.
But that said, I'm sure it will be a great option for those who choose not to have a BAHA implant or a TransEar.
Please keep posting updates; this will be very valuable information for a lot of forumites.
Jan
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hello gloria
i just saw your post and i also live in the bay area, do you know if they are still accepting people for the trial as i am interested in trying this out. thanks!
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Hi chocolatetruffle,
Please call to this number (650) 353-3971 and talk to Lily Woodby. I hope you can get into the trial.
Good luck,
Gloria
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Gloria,
First, I want to be sure that you were thanked for your input and trying the device and reporting results to us. We're all very thankful for the insights since most of us are not able to do the trial ourselves.
Second, the battery issue. I agree that research is going on all of the time into battery technology. But, it seems to me that the technology already exists. The TransEar and Divino and Intenso and even the BP100 all have massive better battery life than the SoundBite. It's inexplicable to me why that same technology can't be used in the SoundBite to improve on the battery life. I agree that the SoundBite battery life will get better over time. In my mind they MUST improve it in order to be a viable solution or alternative to TransEar or BAHA. Keeping the cell phone analogy alive, they're producing a product with "bag phone" type of battery technology when there are already devices available that (in your own words) last for days or even weeks on a single charge.
If I were in the trial, my primary feedback to them would be that they MUST improve the battery life to be viable. 3.5-5 hours at a time isn't enough for most people to even last an entire work day.
I agree their primary effort must be in making sure that it helps with SSD. Check. According to you, it does. Now, efforts need to be placed into extending the battery life otherwise, in my mind, it's not very helpful as an overall solution.
Next, I think they should consider dropping the price as well. I think I remember you saying that it would cost around $4,000. Your primary point being that it's a non-surgical solution to SSD and is a bargain at $4,000. That's great.. But, TransEar is only $2,800 (and the battery lasts for weeks). So, in summary if the battery could be improved to last several weeks and the price point dropped to more TransEar-like levels, THEN it would be a viable competitor for BAHA and TransEar.
Keep the updates coming.. Because, the technology in and of itself is fascinating and I look forward to seeing how they address those issues.
Regards,
Brian
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Hi Brian and Jan,
Thanks for all your comments. As you know, what I am doing is only a “trialâ€, I have forms to track each day the time I am wearing the SoundBite and I have to report this to Sonitus. I am also keeping a journal of my experiences and my concerns which of course include battery life. My role with the trial is to help them to make a quality product. Again, I have to emphasize that they are studying the device functionality, for all I know they have better longer lasting batteries already but don’t justify the cost for the trials. Ok, maybe that would be overly optimistic. ;-) but for sure they consider battery life an important factor.
I am just posting my own personal experience to share here with the community; I am not an expert or a vendor. Having SSD has been horrible for me and for sure it has been horrible for most of the people in this forum. I used to have very good hearing on my AN side before the surgery and of course I want something that will help make my life as close to normal as possible once again. I am very happy with the results of the SoundBite, it is better than I expected. Being able to hear clearly the sound of my rubbing fingers on my AN side as if it were my good side or to hear people talking clearly on my AN side is an amazing feeling for me. I feel lucky to be part of this trial and I will be very sad when I have to return my device. When they do become available I plan to purchase my very own.
I am very happy to know that there is another option for us because not all the devices have been working well for everybody so far. TransEar was not for me but works for others, same goes for the BAHA. I was not a BAHA user and certainly no one in this forum has tried both the Sonitus and Baha yet so it is hard to make direct comparisons yet.
As a TransEar user I can tell the difference, there is no comparison for me between the TE and the SB. Regarding the price of the SoundBite, I haven’t heard anything yet although I think someone in this forum did mention an amount. I guess we will just have to wait and see. I wish I could have gotten my TransEar at the price that Brian saw it; I just checked and I see that I paid $3,250.00 just over a year ago on 10/2008. Considering that it was not working out well for me and I am not wearing it anymore it doesn’t really matter to me how long the battery lasts. Of course, my opinion would be different if it was able to work for me in my situation.
SoundBite is a great option for those who don’t want another surgery or the ones who are not able to get results from the TransEar. Each device seems to fill its own niche and it is just a matter of figuring out what your specific needs are and finding the right fit. Unfortunately for us it will likely require some trial and error.
I will keep posting my experiences, I have a follow up appointment in a couple of weeks and I am curious about what they will have to say about my experiences so far. I am taking notes of everyone’s concerns about the product to share with them, for sure they will appreciate them as they should certainly help them to better understand what kind of expectations their “market†has for their product.
Take care,
Gloria
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Gloria,
Thanks so much for sharing your experience with us. I'm glad it's working well for you - and I hope they give you one for free - or very close to it - for your time and effort! ;D
Technology is just amazing. I'm sure what we'd consider a big deal (battery life) is just a minor detail to the developers, and I'm sure you're right, it just doesn't warrant the expense of a better battery at this point in the trial.
Sounds like a great option for people who don't want surgery!
Thanks again!
Lori
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thanks for sharing this with us...keep us posted
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Thanks Gloria for posting!
I'm excited & can't wait for my SoundBite to arrive! I was hoping to have it for all those holiday parties I'm going to ;D but it looks like it will not be ready for a while. Hopefully before Christmas, but most likely in Jan.
As for the battery, yes, that is a bummer. Fortunately, I no longer work in the city & have a quiet office in my home north of SF. I could see how that would be a problem for anyone in a busy work environment.
Will keep everyone posted once I finally get my SoundBite.
Carolyn
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Carolyn,
Thanks for your update, I hope you get your device for the holydays; please don't forget to post your experience when you get your SoundBite.
Have a wonderful day,
Gloria
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I emailed them to see when it would be available...His (Shelton) response:
We currently have a clinical trial underway for an intended first indication of single sided deafness with an intended first approval from the FDA in mid 2010. The trail is only happening in the San Francisco Bay area and is now fully enrolled. We'll keep you informed. We should be available more broadly by mid 2010
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Hi another NY,
thanks for your info; I was going to ask this in my next appointment, ufff one less thing :)
Hi chocolatetruffle;
Could you get intro the trial? just curious!
Within the next week I have my follow up appointment. Please let me know if anyone has questions about the product that would like me to ask to the doctors.
Have a good day,
Gloria
PS, I apologize for the mistakes that I make in the spelling, for example in my last quote I typed "holydays" instead of "holidays" oops!. English is not my native language, sometimes my husband helps me to correct my posts, but sometimes he is busy.
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Hi Gloria,
Just checking in. Is your trial over? Are you deeply saddened not to have the SoundBite anymore? It must be hard to give up:)
Would you use this instead of a BAHA?
I get mine Jan 18, so I'm still anxiously waiting.
Carolyn
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Hi Carolyn;
I went for my folllow up appointment and they gave me another SoundBite which battery lasts longer, this new device I have to wear for one more month :). I would definatelly wear the SoundBite instead of BAHA (because I don't want another surgery). The whole trial is for two months, so I guess after this next 30 trial days I will have to return it :(
I love my SoundBite, it is difficult to go somewhere without it, you have no idea how helpful it is for me.
I am glad to hear that you will get yours soon.
Happy New Year,
Gloria
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do u still have too wear something behind the ear with this?
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jazz -
the Sound Byte involves both a piece worn behind the ear and a piece worn inside the mouth.
If you go back to page 1 of this thread, you'll find a link for Sonitus that will explain everything.
It's a very interesting concept.
Jan
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Yes jazzfunkanne, I do have to wear the BTE (Behind the Ear), what they changed is the ITM unit (In The Mouth) with a battery that lasts longer.
Take care,
Gloria
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Gloria,
Are they aware that there is a great deal of interest out here? Please let them know so that the rest of us will be able to enjoy it as soon as possible.
Nancy
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Perhaps I am naive, but I thought that for participating in the trial, you would be able to keep the device?
Sara
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Perhaps I am naive, but I thought that for participating in the trial, you would be able to keep the device?
Good question, Sara.
I thought that you get paid for most clinical trials.
Are either of us correct, Gloria?
Jan
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Sara and Jan;
When I signed up, the agreement it clearly stated: “There is no direct benefit to you for participating. Your participation may help Sonitus to develop this new hearing device. You will be required to return the device to Sonitus Medical upon completion of the studyâ€
The study will ultimately reimburse me for my associated travel costs to and from their study center and a small amount in addition for having completed the full study. I am really not concerned about the money; I would not consider that as a payment. When I applied for the trial the last thing on my mind was whether or not they would pay me anything, I was just so excited to be part of something that can help me to live a better life.
Nancy;
I am sure Sonitus has studied the market already and one way to do that it would be by researching related websites like this one. Of course I have already commented to them about this forum and wouldn’t be surprised if they read it periodically.
Happy New Year to everyone :)
Gloria
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Thanks for letting us know, Gloria. I thought that since the mouthpiece, at least, was made specifically for you, that you would be able to keep the device. It's not like they can reuse it.
But then I think Jan should get an employee discount from Cochlear for all of her volunteer work, too.
Sara
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Gloria -
I know exactly what you mean about being able to help others - it's one of the reasons I'm a Cochlear volunteer and though they reimburse me for travel also, I generally don't charge them as I consider it an honor to tell others how enamored I am with my BAHA. I'd tell others about it even if I weren't a volunteer - I just love it that much. Although I've had my BAHA for almost 2 years now, I've only been a volunteer for about 7 months.
I once told my neurotologist that it's my goal to have every SSD person receive a BAHA, but having them get a TransEar or a Sound Bite - if that's their choice - would make me equally happy. I firmly believe that if being SSD is an issue that people have a hard time living with (I DEFINITELY was one) that they should do something to improve the situation.
If you do talk to the powers that be @ Sonitus, please mention that the ANA's next symposium will be in 2011 in Cincinnati and they may want to exhibit there. It would be a great opportunity for them to "get the word out". Cochlear exhibited at the last symposium in August 2009 - and in years past, I believe - and I'm hopeful the ANA will book TransEar and Oticon in 2011 as well. If Sonitus is interested, they should contact Judy V @ the ANA.
Jan
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Jan,
Thanks for the info, I'll pass it on.
Gloria
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Hi everyone,
I will be returning my SoundBite on January the 23rd; my 60 day clinical trial will be coming to an end. Kinda sad .
My experiences during this time with the SoundBite are as follows;
IN QUIET CONDITIONS:
- I have noticed that speech recognition is almost perfect on both sides in quiet environments. I originally thought I didn’t need a hearing aid in these kinds of environments but after trying the SoundBite I noticed a difference, the voices and sounds are much clearer.
- Definitely helps with the directionality.
- I can hear even the quietest sounds, for example, when someone is whispering on my deaf side.
- While I am watching TV and someone is talking to me on my good side I can still hear the TV, which was a problem without the device.
- If I am chewing while watching TV (i.e. crackers or something crunchy) I can still hear the program, without the device I would sometimes have to stop chewing in order keep from missing something. It would seem that the SoundBite filters the sound of chewing.
- If I fall sleep over my AN side (while wearing the SoundBite) I don’t have feedback.
- I can wear a helmet and ride the motorcycle without any problems. I don’t get any feedback or discomfort.
- I can wear hats or beanies without any complication.
- When my husband is seated next to me, he likes to caress (by rubbing) my shoulder. Without the device, if he rubs my shoulder on my good side the sound would sometimes annoy me to the point where I would have to stop his hand. When I wear the SoundBite it does not bother me, I guess because I have hearing on both sides and my brain doesn’t concentrate on only the sounds from my good side.
- It is more pleasant to attend a lecture, everything is clearer.
- I can hear the noise of my rubbing fingers in my deaf side.
- If I lay down over my good side while wearing the device I can still hear.
- I can speak on the cell phone using my bad ear but sometimes I experience feedback.
- I don’t have feedback when someone gives me a big hug.
IN NOISY ENVIRONMENTS:
- It is very helpful in the theatres; I can usually hear, on my deaf side, when someone is whispering in the next row. I can also hear my husband commenting about the movie when he ends up seated on my deaf side.
- It helps in restaurants, I am able to hear what the waitress is saying and I am able to hear the person seated on my deaf side.
- While attending a concert (Metallica :-O ), I had problems holding a conversation while they were playing (I had an ear plug in my good ear) but my husband said that even for him it was next to impossible.
- At the supermarkets or grocery stores, as I have mentioned before, I consider my hearing to be about 55% of what it would otherwise be on the deaf side when wearing the SoundBite. I don’t know why but it seems that the sounds in supermarkets and grocery stores are just weird that way.
- Walking on streets with traffic and talking with someone on my deaf side is not a problem.
- When washing dishes while wearing the SoundBite, the sound of the running water from the faucet is less distracting, especially while holding a conversation with someone.
- I have noticed that the sounds of the ambulances or police cars are not as annoying while wearing the device, without it those sounds drive me crazy.
- The other day I heard a noise while driving my car which I could not hear when I took out the device. When I asked my husband to check the car he was surprised that I could hear the noise at all. It turns out the noise was not that loud and was coming from the tire in the back.
GENERAL COMMENTS:
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.
The BTE (Behind The Ear) is almost unnoticeable, the sound tube is transparent and thin and the part which goes behind the ear is small.
The doctors at Sonitus told me that the final device will be improved in both design and functionality. As I have posted before, in my 30 day follow up appointment I received a new ITM (I think it is part of the study plan). The new ITM battery has been lasting a minimum of 5 hours and I am told that by the time the final device is ready for market it is expected to get up to around 7 hours.
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.
I am very pleased to have been part of this trial and to have been given a chance to try out such a promising device. This device continues to give hope to a huge group of us with SSD who are waiting for something non-invasive. I am glad that the doctors are working on improving the lives of people like us with SSD.
SOUNDBITE IS SIMPLY AWESOME!
Thank you everyone for your comments, personal messages and encouragement. I will let you know if I have anything more to share.
For sure everyone is now waiting to hear from Carolyn (she will start the trial this month on the 18th), I know I am. Please share with us your experience Carolyn.
Best wishes to everyone,
Gloria
PS. I wanted to enclose a picture wearing the BTE but I don't know how.
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Thank you so much for the thorough review, Gloria. I am part of another group for hemifacial spasm where I can share information such as this.
I am so sad you have to give it up! If I ran Soundbite (and since I don't, I can afford to be generous), I'd let you keep it.
Sara
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Gloria,
What an excellent report you've written -- thank you! It sounds as though the SoundBite is a really useful device -- certainly in your case, at least -- and will hopefully prove to be yet another alternative for SSD folks to explore.
I hope that they will start producing them for sale before too long and that you'll be the first one in line to receive one!
Catherine (JerseyGirl 2)
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Gloria,
Thank you so much for the informative post. It addressed a lot of my issues. This device sounds great!
Grace
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Hi Gloria,
9(
Thank you so much for trying Soundbite and letting us know about your experience with it. I am definitely in line to get one of those (or at least try) . Do you know when will they start selling it in the market? And, how much the price would be?
Regards,
Raj
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Gloria,
Great report and I will certainly be waiting for it to reach my shores down under.
Laz
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Hi everyone,
Here is the picture of me wearing the SoundBite BTE (Behind The Ear) trial device. As you can see it is hardly noticeable.
Gloria
(http://i921.photobucket.com/albums/ad59/Arasha07/BTE.jpg)
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Hi Raj;
Thanks for your comment. According to Sonitus Medical (the inventors) it could be available as early as mid/2010.
Regarding the price, Grace got the information from Sonitus: "it will likely be in the $4,000 ballpark". As I said before, they are working hard to get the coverage from the insurances because it will not be considered as a hearing aid.
Here I send you the link of their website, you can contact them for more specific details.
http://www.sonitusmedical.com/
Take care,
Gloria
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Thanks Sara, Catherine (JerseyGirl 2), Grace, Laz for all your comments.
Have a great day,
Gloria
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Gloria -
I'm a little confused here (yes, again, Pooter) and you've probably said this in a prior post, but how is the Sound Bite not considered a hearing aid?
I know it works through bone conduction, but it's not an implant or a prothesis like the BAHA - and the only thing that makes it different from a conventional hearing aid is the piece in the mouth. What "grounds" does Sonitus have to make their case?
Thanks,
Jan
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Jan,
Heh.. I detect a pattern here.. Be that as it may, I was wondering the same thing. Certainly, I can see Cochlear's "case" for calling the BAHA an implant, but it's more gray to call the SoundBite anything other than a hearing aid. Perhaps their trying to follow some lines of it being like some detal prosthetic, however I'd wager the insurance companies will say that dental insurers should cover it if that's the case...
I wonder how they'll get over that hurdle..
Thanks, Gloria, for the comments and the picture. I remain unimpressed (although to a lesser degree) with the battery life. They've got to find a way to make it last longer than a "typical" person's waking hours to even begin to make it useful for someone like me. I know they're working on that, but for them to even say that their "goal" is to get it up to 7 hours is problematic. Most people work longer than that.. In addition to working hours, they have "awake" time both before and after work where, presumably, they'd want the benefits of the SoundBite. Personally, I think if Cochlear can make their battery last for days, and the makers of TransEar can make theirs last for days, and Orticon can make their Ponto pro last for days.. I don't think it's out of the realm of possibility for them to make their battery last longer than 7 hours.
I like the concept of the SoundBite (even though the in the mouth part seems a bit weird).. I think with some dramatic improvements in the battery life, they may just have a viable alternative for those with SSD especially those that don't want surgery or the predicament of getting a snugly fit ITE (TransEar).
Regards,
Brian
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Hi Gloria,
Thanks for the information and the link. This device really seems is great. I wish the price were lower than that. Probably it's worth it anyways. I am looking forward to trying it later this year.
Regards,
Raj
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Gloria -
I'm a little confused here (yes, again, Pooter) and you've probably said this in a prior post, but how is the Sound Bite not considered a hearing aid?
I know it works through bone conduction, but it's not an implant or a prothesis like the BAHA - and the only thing that makes it different from a conventional hearing aid is the piece in the mouth. What "grounds" does Sonitus have to make their case?
Thanks,
Jan
Jan,
Thank you for your excellent question, I was wondering the same thing myself. I sent an email to Sonitus to see if they could provide us the answer. I received a response from Jason Shelton of Sonitus and I have included it below.
Here is his reply:
####################
Hi Gloria,
There are two perspectives from which reimbursement coverage for new medical devices can be sought: 1) on the basis of the nature of technology itself and 2) on the basis of the patient who is being treated with that technology. Initially, coverage for new devices is often sought on the basis of the later, which if successful leads to policies providing coverage that describe the former. It is incumbent on the manufacturer to invest time and resources to build the case to get reimbursement for their product up front on the basis of one, the other, or both perspecives. And it's a big process. Perhaps the makers of TransEar never sought reimbursement coverage for their device for one reason or another and as a result the device wound up being classified as a hearing aid, I don't know. Nonetheless this is exactly what Sonitus intends to do.
Now when breakthrough technologies like SoundBite come along, they are sometimes tough to classify strictly on the nature of the technology itself. Hearing aids, for example, are generally not reimbursed and legislation was created specifically to exclude them. However the SoundBite hearing system is not a hearing aid, insofar as it does not amplify sound or for that matter even use the air conduction pathway to transmit sound as hearing aids do. Today however, Single Sided Deafness (SSD) is a disease whose treatment is currently covered by insurance. On that basis alone we could argue that our device should be covered. But in fact, the standard reimbursed treatment for SSD is surgical in nature, with a total cost to the payer of $12K-$15K and sometimes more. Now it's true that our new device is not surgical, but that is actually a plus because the total cost of care that an insurance company would have to pay for a patient's treatment with our device will be significantly less that with an invasive implant surgery. Medical innovations that decrease medical costs like SoundBite are looked upon favorably, especially in the currently changing US healthcare system.
Sonitus is going to fight for reimbursement starting from the perspective of the patient. We will seek reimbursement for our device on the basis that, if a patient is a candidate for a currently reimbursable surgery for an implant to treat their condition (SSD), they would be no less effectively treated for that condition by receiving our device at a total cost to the payer (insurance company) that is significantly less.
I hope that helps clarify things,
Jason Shelton
VP Marketing, Sonitus Medical
####################
I think that helps to clear things up at least it does for me. It seems reasonable , I hope everything goes according to plan.
Cheers,
Gloria
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I remain unimpressed (although to a lesser degree) with the battery life.
Regards,
Brian
Hi Brian,
I agree, for sure they need to continue to address the battery life if they wish to appeal to the broadest group of patients. Changing and charging throughout the day is a workaround at best and is probably manageable for most, albeit a nuisance, it certainly is not realistic for everyone.
Have a good day,
Gloria
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Gloria -
thanks for the info. I don't agree with Jason's statement that "Single Sided Deafness (SSD) is a disease whose treatment is currently covered by insurance."
If that were the case, why wouldn't insurance companies cover conventional hearing aids and/or TransEars?
Regardless, his case for coverage is very interesting. I'll be curious to see if insurance companies will agree to cover the Sound Bite or not.
If you hear anything new along these lines, please let us know.
As for batteries, I want to clarify Pooter's statement that Cochlear can make their batteries last for days. The batteries I use in my Cochlear Divino last for weeks - not days.
Jan
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Jan,
2 weeks = 14 DAYS.. semantics. Point being they certainly last longer than 7 hours.
I disagree about SSD being a "disease"... it's more like a "condition". I'm interested in insurance coverage and anything you, Gloria, hear along those lines also.
Gloria, I agree that changing and charging multiple times in a day is not realistic. To me, it's a deal breaker and I suspect that many others feel that way also. It's kinda like buying a personal aircraft with a range of 20 miles. It's a great thought and cool idea, but realistically speaking, it's not workable.
Regards,
Brian
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Most of the world by this time has come to accept the idea of charging your cell phone every night. If they can make the SoundBite work for a day, or let you charge two sets of batteries at night, I think it would work out fine. I imagine it takes more power to drive the piece in your mouth than a BAHA uses, since it isn't actually attached to bone.
The official terms used in medical and insurance records are "diagnosis" and "treatment"; no need to debate disease versus condition.
I actually think they have a decent chance of getting an insurance company to recognize that the SoundBite is a less expensive way to treat the diagnosis of SSD, if the company is already covering other treatments for SSD. Jason sounds like he can talk the talk.
Steve
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I don't wear any type of hearing device, so please forgive me if this is an ignorant question. Is the problem that the SoundBite uses rechargeable batteries rather than the disposable ones like the BAHA?
BTW Steve, I charge my cell phone about once a week. Maybe twice during periods like when my dad was sick.
Sara
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Sara -
actually that's a very good question, but I don't know the answer to it.
Personally, and I stress personally, wearing something in my mouth AND behind my ear would be a deal-breaker for me. I just can't imagine why I'd want to do that. I am also opposed to putting anything with a battery inside of my mouth.
I make these statements well aware that some can't imagine having a hole drilled into their skull and a titanium rod sunk into it.
It's kind of like AN treatment - people need to decide what works best for them.
Pooter -
semantics? Why are you always pulling my chain?? ;) :D
I agree with you, I don't think SSD can be considered a disease. I'm SSD but it wasn't caused by a disease. It was caused by a tumor growing on my hearing nerve and the nerve was destroyed when the docs peeled the tumor off of it.
I also agree with Steve. Jason sure can talk the talk. I wonder if he was ever a politician or a car salesman ;D
Jan
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Jan: I would never pull your chain. ;)
Sara: good question and I bet that is at least part of the reason. They are trying to get something very small to fit in the mouth while making it rechargeable. Tough but not insurmountable. Which is why most of the world's innovations in health technology are created in the US. At least until ObamaCare is passed. ;)
Steve: if the battery was replaceable, they wouldn't (probably) have the problem with battery life.
Regards,
Brian
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Gloria,
Do you have any tinnitus? If so, did you notice any difference with the soundbite. Right now, I think I struggle most with noisy environments where my tinnitus (running water/white static) increases and then impedes my good hearing by interference. I am curious if the soundbite reduced this or if this was the same regardless of device?
Thanks for doing such great reporting!
Cheryl
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Day 2: Clinical Trial
I drove thru the first round of storms out here, determined to get my hearing device. Thank goodness it was a holiday. I don't know if I can do as in depth posting as Gloria, but more like a log of my experience.
They made 3 & gave me 2 devices. All had to be adjusted to my mouth. My first impression is I think my mouth may be too small. I remember I had root canal on my back molar & they had to keep my mouth pried open to do the work. I also know my two back molars & have been filed alot (shortened) to adjust for my bite. It clips on quite easily & I really do not notice the outside piece & the wire that wraps around my tooth. It's the inside that fits on the roof of my mouth I feel is too big & the wire that connects to it, I can feel my biting on it. It would most likely take a few rounds to get it adjusted just perfect. I do not notice the BTE part at all.
I drove home in the rain, hoping to crank the tunes & finally hear stereo again! Whenever I cranked it to a louder than normal decibel, I experienced static. Almost like a speaker when the volume does not match capacity. I also noticed today, talking to my husband, who is a "L.T." (loud talker that is) I experienced the same static. I also noticed it in the car driving w/my son & I had to talk louder than normal to him in the back seat. This may be something they can adjust, I would assume so.
The stream in our backyard is rising & I walked by & could hear very clearly, the gushing of water. I also thought I heard my cell phone ringing & then realized it was the "chink, chink" of ice in my glass! I do get feedback when I tried talking on my cell phone on the device side. I cannot fit the normal double ear piece headphone into my ear (again, it's too small), but luckily I bought a few of those great single sided ear pieces that was posted on here a while back.
It's still uncomfortable chewing on the device side, but I've managed a sandwich & chips quite comfortably on the non-device side.
My first impression, and understand this may change, is I'd rather have a hole in my head! It just seems easier.
I also met Jason & he was a very nice fellow. What do expect from a marketing guy?
All in all, it was a quite pleasant appointment & I'm excited to be part of the study.
Will keep you all posted,
Carolyn
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Carolyn -
thanks for the feedback (no pun intended). When I read about the Sound Bite, I thought the mouth piece would be very awkward.
But then again, I'm a confirmed "hole in my head" type :D
Hang in there, maybe it will get better.
Please keep us posted.
Jan
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A fun footnote to this is the partnership Sonitus has with In-Q-Tel.
http://www.redorbit.com/news/health/1694433/sonitus_medical_secures_strategic_investment_and_technology_advancement_agreement_from/index.html
In-Q-Tel is the not-for-profit, strategic investment firm that works to identify, adapt, and deliver innovative technology solutions to support the mission of the U.S. Intelligence Community. Launched by the CIA in 1999 as a private, independent organization, In-Q-Tel's mission is to identify and partner with companies developing cutting-edge technologies that serve the national security interests of the United States.
Very James Bond...
I have to say as the mother of an AN pt. who after her surgery at 16 became SSD ...the research and technology focused on SSD is so exciting...AJ will be turning 21 in May. She was not thrilled with the concept of a permanent post in her head offered by the BAHA...so being able to remove this device, ( just like she takes out her contacts, and took out her retainer when she wore braces) may appeal to her. I am already thinking of the potential of future improvements! Dentists now can seat (removable) dentures and (permanent) crowns with posts anchored in the jaw bone...some day this may evolved into an anchored "false tooth" (removable or permanent)...who knows what it could evolve into and that is something more to look forward to!
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Do you have any tinnitus? If so, did you notice any difference with the soundbite. Cheryl
Hi Cheryl;
Sorry for being away for awhile, I have been very busy. I do have terrible tinnitus as a consequence of my AN surgery. I agree with you, I experience more tinnitus when I am in noisy environments. You made a good question, unfortunatelly I read your quote today after I returned my SoundBite and I can't tell you exactly how the device works with the tinnitus. Maybe Carolyn can figure this out for us.
Gloria
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A fun footnote to this is the partnership Sonitus has with In-Q-Tel.
http://www.redorbit.com/news/health/1694433/sonitus_medical_secures_strategic_investment_and_technology_advancement_agreement_from/index.html
In-Q-Tel is the not-for-profit, strategic investment firm that works to identify, adapt, and deliver innovative technology solutions to support the mission of the U.S. Intelligence Community. Launched by the CIA in 1999 as a private, independent organization, In-Q-Tel's mission is to identify and partner with companies developing cutting-edge technologies that serve the national security interests of the United States.
Very James Bond...
INTERESTING... :-X
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Carolyn, don't worry yet, it took a little getting use to at first for me as well. I think you will find that it will only take a few days for you to adjust.
I remember in the past when I had braces, the first days I just wanted to give up but later I acustomized. I too felt feedback and a little discomfort the first few days, but after your mouth adapts to the device you will not want to stop wearing it, especially because of the hearing benefits that the SoundBite gives you.
In my opinion, the ITM has to fit perfectly in your mouth, if you touch the wire while you chew, it is better to tell the Dentist at Sonitus. I could eat with both sides without complications or discomfort.
Take care,
Gloria
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Hi Everyone;
As I mentioned before, today was the day that I needed to return my SoundBite. The doctors told me today that they would have ready for me a new ITM device to try in a couple of months, probably around March. I was very happy to hear the good news because it gives me the chance to continue hearing on my AN side. This new ITM unit is more comfortable than the other one, it is a new and improved design. I had no problem with the first component, but this new one fits much better, I could barely feel it in my mouth.
Gloria
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Gloria - how exciting!!! Can't wait to "hear" what you think of this one...and hopefully you can figure out the tinnitus questions too and how it is affected by the device!
Maybe you will end up getting to keep one of these afterall!
Cheryl
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ANAUSA forum is not read just by people with AN issues. I am very proud to be part of this forum. I want to share the information I just found out at “Thestar.comâ€, the Canada's largest online news site.
http://www.thestar.com/news/canada/article/759293--new-hearing-aid-conducts-sound-through-tooth
Best wishes to everyone,
Gloria
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Nice.. :)
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Interesting article.. I wasn't sure if I was reading an advertisement for Sonitus or just an article about them.. ;)
Something struck me as odd (aside from the obvious leaving out of any of the concerns that many of of us have and only focusing on the positive). It was this statement: "While some hearing aids use bone conduction to send sounds to the cochleae, they also require a titanium post to be drilled into the skull."
That statement leaves out completely the thousands of users of TransEar, which uses the same bone conduction principle used in Sonitus, BAHA and the Ponto series of devices.. And takes a negative shot at users of those BAHA-like users.
Decent, but incomplete in my opinion, article.. Thanks for sharing it.. It's nice to know that others besides AN-ers read this forum as many will get a better understanding of what we all privately deal with daily.
Regards,
Brian
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Clinical Trial Update:
Apologies for being so tardy, as I know everyone has been waiting for a 2nd opinion on the SoundBite.
First off, I do not have a tinnitus issue, so I cannot advise on it.
I have 1 more week of the trial & I guess I am not completely SOLD. Advances are being made everyday on the product & I think I would reconsider if the ITM piece were smaller. It originally started as a real wire retainer similar to the dental one. It's official, I do not have a "Big Mouth" :D The dentist said he knew this would be an issue. I also have a ridge on the top of my roof (forgot the official name), in the center, that protrudes like a mountain. In most people, the roof is relatively flat or concave. This has been causing the ITM to rub on the inside of my mouth making long-time wearing uncomfortable. I still cannot eat comfortably w/the ITM (soft bread is easiest), & I still bite on the wire when closing my teeth. I believe my teeth have been drilled down in back to accommodate for my small palate.
I had to have 2 more ITM pieces made as the two I had broke in different places. The first one they remade according to the initial design. It still feels uncomfortable & big in my mouth, the second, was redesigned slightly to fit my mouth better. It is my favorite ITM out of the two, but I still hit the wire & is uncomfortable when I eat. I am also currently experiencing increased feedback in my new ITM which hasn't been there the first 2 weeks.
Overall:
I do miss the SoundBite when I am not wearing it. I notice that I cannot hear as well, & locating my toddler is more difficult. I thought I would be perfect for the Soundbite since I do not work in a big city or office environment, however I still find it a bit cumbersome. A big advantage for me would be able to eat at a restaurant w/the piece in, however, I still cannot do it. I'm thinking I would still rather have a hole in my head.
Sound has been good in a noisy gym w/lots of children & at a noisy daycare.
Hearing a creek w/running water has been a more pleasureable experience on my SSD side.
Low talkers are still hard to hear.
Wearing an iPod isn't as closed off as it used to be. I can still monitor the environment around.
It has been a detrement at bigger functions. All you can eat Crab Feed, it did not work well, as well as Superbowl w/all the good food around. I was constantly taking the piece in & out. I can see you could lose it pretty easy.
Ever hear how the Indians would put a pebble in their mouths while going long distances to keep their saliva going? That's what it reminds me of when I go for a run & pretty much all the time. It is comfortable in the mouth, but I definitely know it is there. I can converse comfortably with it in.
I think there are still some bugs in the device, however if they can yet make it even smaller & can fix the feedback issue I would reconsider. It has been a great experience to be able to try it out before purchasing.
If I've missed any points, please post questions.
Thanks,
Carolyn
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Carolyn,
Thanks for posting your experience with SoundBite. I didn't know you had the "alveolar ridge", I can't imagine how uncomfortable it was for you to chew while wearing the ITM. The feedback you were experiencing could have been from the fact that you were touching the wire with your teeth .The ITM fit very well in my mouth and fortunately I didn't have problems with braking parts or anything like that, I too have a petite mouth, albeit absent the ridge :). Sorry you missed the best part of wearing the SoundBite, which is EATING at a restaurant, or watching the TV while eating "nachos" without missing any words from TV.
I know you had the Baha demo, you are probably the only person who has had the chance to try both devices. How do you compare the hearing benefits between the SoundBite with Baha?
I read on another thread that you found it very hard to notice the difference when you were having the Baha Demo but you were finally SOLD when they put a plug in your good ear & someone whispered on your bad side. When I tried the SounBite I noticed the difference immediatelly without plugin my good ear.
As I mentioned before, everything fits its own niche, at least now we have another device to try until we finally find the one that we are comfortable with. When we are going to make an important decision about our health, in this case, to improve our hearing, it is extremelly important to research things thoroughly so we can be confident in our final decision. This is the reason why it would be helpful for everyone if you could describe the differences between Baha and SounBite.
I agree with you that the SoundBite still has some bugs to be fixed, for example the battery life, but I still think it is an amazing breakthrough.
Take care,
Gloria
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I read on another thread that you found it very hard to notice the difference when you were having the Baha Demo but you were finally SOLD when they put a plug in your good ear & someone whispered on your bad side.
This is only true if you've been SSD for a long time without any hearing "assistance". Those who try the demo within a few months of being SSD notice a big difference right away. This was my experience.
Being SSD for a long period of time gives the patient time to adjust and adapt to being SSD. I know when Kaybo tried the BP100 demo @ the ANA Symposium it didn't make much of a difference for her, but then again she's been SSD for 12 or 13 years.
Jan
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I think I was SSD for about 1.5 yrs, so maybe that is why it was hard to notice. I only tried the BAHA in the audiology hearing booth, so cannot accurately compare the two.
Yesterday, I sadly gave up my SoundBite. I will miss hearing. Luckily they mentioned the ITM part, that was giving me problems is going to be 40% smaller the next go around! There will be another, longer study & hopefully I'll be able to try it out again.
Doing the clinical trial has made me even more determined to hear again. I'm feeling like I don't want to wait anymore, just give me something:)
Carolyn
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I believe the launch date for SoundBite has been pushed out. I believe until the end of the year.
I just found out that I will be a part of another clinical trial for 6 months! I can't wait as I am seriously straining to hear everything now that I had to give up my first product. The ITM piece is supposed to be much smaller so it should fit my mouth better.
I can't wait!
Carolyn
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Good for you Carolyn!, I hope this time the ITM fits better. I am very glad that Sonitus is not giving up under situations like the alveolar ridge, which gives me the perception that they want the product works for everyone with SSD issues. I too am waiting for the second trial, like kids wait for candies, all this time without a hearing aid has been very hard for me; especially after wearing the SoundBite I realized, like you, that I need a hearing aid ASAP.
I attend classes at the College, I have to choose the very first chair at my left side in order to let my right ear to capture the hearing. When a classmate is speaking I have to look around to figure out where he/she is; I feel like a dumb. The other day at Lab class, my teacher came to my AN side and asked me something; first of all I didn't understand what she said, and second, I turned back my head at my right side. Experiences like this occurs me every day. I am just tired about this. Isn't awful to be SSD?
Take care,
Gloria
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Please keep us updated on the release date. I will mention this device to my neurotologist when I go for my annual exam in two weeks and see what kind of reaction I get.
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Gloria,
I copied and pasted your comments about the Soundbite and emailed them to my 21 y.o. daughter, several weeks ago. (She had AN surgery in 2005) She identified with your comments about what you could not do and how the Soundbite was working for you.
Consequently she is very excited to get one . I have tried to get the date they will be available but have not gotten any information so I guess we all are just waiting. I wonder however if you might ask for us, if candidates for the Soundbite will have to come to SF area to get them (Initially anyway)?
BTW. Your last comment about being in class and labs...she is also in college a biology / Chem major in large lecture classes and labs all the time, she never complains but I have learned from your comments how you are forced to cope every day. I never realized the full extent of your issues.
I am so happy that this technology is being developed, our hopes are up.
Debi
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I have tried to get the date they will be available but have not gotten any information so I guess we all are just waiting. I wonder however if you might ask for us, if candidates for the Soundbite will have to come to SF area to get them (Initially anyway)?
Debi, you are such a wonderful mom. After reading your quote I can perceive how much you are concerned about your daughter, and her everyday hearing challenges. This just made me remember about my mom, if she was alive she would be doing the same you are doing. Sadly she passed away four years ago, You have no idea how much I miss her :(
Tonight, I emailed to Sonitus your question. As soon as I get their response I will be posting it here.
Take care,
Gloria
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Hello,
I copy below the response received from the President of Sonitus:
"We recently filed our regulatory application with US FDA. This process normally takes 3-9 months depending on FDA questions and concerns. As soon as we receive the FDA clearance, the SoundBite hearing system will be available on the market.
Meanwhile, we are re-enrolling the SSD patients from the previous study for the long term study (6 months). Lily is going to contact everyone in the next 1-2 weeks to see who is interested and setup the appointments. The plan is to give back the old devices for the first three months of the study and then switch everyone to the new devices that are much smaller (both ITM and BTE). Let me know if you have any additional questions."
I can't wait for the second trial with the improved devices. I Will keep you all posted throughout the trial stages.
This time I will focus on how SoundBite work with my tinnitus.
Have a nice weekend,
Gloria
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Oh, I'm so excited! And so jealous!
Good luck. And please report on the new device.
Thank you.
Nancy
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Thats great news - hopefully they'll find their way down under as well.
Laz
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I received this from a basic researcher today. Sure sounds like the Sonnitus to me:
http://journals.lww.com/otology-neurotology/Abstract/publishahead/Preliminary_Evaluation_of_a_Novel_Bone_Conduction.99271.aspx\\
Mei Mei
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I found out from the researcher today that it is the Sonnitus. It was written last Fall. I am hoping that Sonnitus will be looked upon as a device and not a hearing aide so that it will be paid for by health insurance.
Mei Mei
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Sonitus was named #1 on Top Ten list at Cleveland Clinic:
http://www.prnewswire.com/news-releases/sonitus-medical-technology-ranks-1-on-cleveland-clinics-top-10-medical-innovations-for-2010-64060267.html
Mei Mei
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I still can't imagine this - but then again, I realize that some can't imagine a titanium rod implanted into their skull and I think it's the best little invention since sliced bread.
The Sonnitus is a hearing aid just as the TransEar is a hearing aid. Since no part of it is a permanent fixture I don't think it can reasonably be classified as a "device". The BAHA is different because of the rod that is implanted into the skull. Although the hearing aid is part of the BAHA system - without the rod it's useless; and vice verse. Correct me if I'm wrong here, but with the Sonnitus no part of it is permanently attached to the body.
Jan
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Jan,
I have seen somewhere that the BAHA is considered a prosthetic device. It changes one type of energy to another, replacing the function of a missing body part. Using that definition, I guess the transear and the soundbite both qualify, but not as an implant. Confusing to me but I guess its all about insurance, isn't it.
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Paul -
you are correct. The BAHA is considered a prosthetic device.
I'll buy the theory that prosthetic devices replace the function of a missing body part - for example, an artificial limb - but I'm confused by the "changes one type of energy to another". How does an artificial limb do that? What am I missing here?
Jan
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I still can't imagine this - but then again, I realize that some can't imagine a titanium rod implanted into their skull and I think it's the best little invention since sliced bread.
The Sonnitus is a hearing aid just as the TransEar is a hearing aid. Since no part of it is a permanent fixture I don't think it can reasonably be classified as a "device". The BAHA is different because of the rod that is implanted into the skull. Although the hearing aid is part of the BAHA system - without the rod it's useless; and vice verse. Correct me if I'm wrong here, but with the Sonnitus no part of it is permanently attached to the body.
Jan
JAN, not for sure I told you my story yet on being told NO on the BAHA because it says "no hearing aids or surgical hearing aids" in my contract and they can't even write it down so I can try to appeal it. BUT......OMS from Cochlear gave me one other shot and that was to see if our insurance was self funded and may treat it like a prosthetic implant........WELL, someone at Human Resource said that possibly the BAHA is the only chance because the others are not implanted and referred to more as just an aid......crazy! But, that may help out my case and ONLY leaves me the option right now for fighting for BAHA......the PERMANENT fixture (as you said) ;)
Denise
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Denise -
Cochlear is a great company and really goes the extra mile to help their customers. It's another reason I chose to upgrade to the BP100 rather than Oticon's Ponto Pro. Not that Oticon isn't customer-oriented, I have no idea if they are or not, but I know for a fact that Cochlear is and that's a huge plus in my book.
Good luck with the battle,
Jan
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Hi Everyone,
Time flies!!!, already it has been more than one month since last time I posted. Sorry, I have been hectic lately.
I just want to let you know, dear forumers, that TOMORROW I will get my SoundBite to start the second trial consisting of three phases over a course of six months. I was daydreaming all this time with that day,altough it is just for the trial. Needless to say, all these three months struggling with my hearing problems have been a nightmare.
I will keep you all posted about this exciting experience. Moreover, I will focus in my tinnitus. Let's see how does it work.
Have a wonderful time,
Gloria
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Hi Gloria, good luck with this time too. There are many of us here who are still undecided about which device to choose, and who can wait for sometime to make decision. So, it will be great if you can share your experience in details this time too like you did last time.
Regards,
Raj
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Yes, Gloria. We are all waiting to hear from you and Michael about your month experience in the Bay Area with Sonitus since we don't live there and are not able to participate. I am willing to wait and shop carefully for the Bone Conduction choices available but am always interested in everyone's experiences, especially non-surgical.
Sincerely,
Mei Mei
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My daughter wants the Soundbite very much. IT IS SO HARD TO WAIT. Being 21 and having the permanent post embedded in her skull is not her preference, so just I am watching your comments and sharing them with her. Gloria your comments were so positive you were the one that sold her on this option.
I wonder if one of you would ask the company or whoever is running the trials, how physicians (and dentists) are being trained for distribution in areas outside of the Bay area? Do they have a list of doctors/ Dentists we will have access to, or will the first "customers" need to travel to the Bay area.
Debi
Seattle WA.
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Hi all!
Looks like Gloria & I started Trial 2 on the same date. Hey Gloria, I think I saw you in the office, but we were in different rooms & by the time I stood up from getting my mouth photos done, you were gone! At least it looked like you from your photo!
Anyways, this trial is for 6 months! I was a bit disappointed, when they produced my older Sonnitus Unit & said they will be using this for 3 months & then the new smaller ITM/BTE will be ready later. As most of you know from my previous posts, I had issues w/the mouth piece. The other day, we went out for a drive & even my husband could hear the feedback....bad.
But the good news is, they have chosen a few of us to have a special BTE part manufactured & I am chosen! Actually it is the part that goes into the ear they are customizing for me. They took a mold of my inner ear & they piece should fit perfect inside (instead of a loose, plastic, microphone). This should help with feedback.
I'm still excited to be hearing again & cannot wait to try out the new BTE (a couple more weeks) & then the new ITM. I'll keep you all posted at that point, but probably won't have much to say until I get the new ITM. Feel free, however, to ask any questions.
Carolyn
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The review quoted below is fantastic; thanks Gloria. I'd like to know if there are any BAHA users willing to do a similar review, using Gloria's observations as the go-by. Apologies if there is a thread where I can find a similar review. I've been searching on BAHA but there are a lot of threads/posts and I haven't found one this comprehensive yet. I've been virtually SSD for about 3 weeks (went from mild-to-moderate loss to near-total the day of the MRI that identified my AN; go figure) and am spending a lot of time thinking about and researching hearing devices. I realize it's kind of a labor-intensive request, and I also recognize that reactions to these devices can vary from person to person. But I'm looking for all the data points I can get. So if you're willing, thanks!
Hi everyone,
I will be returning my SoundBite on January the 23rd; my 60 day clinical trial will be coming to an end. Kinda sad .
My experiences during this time with the SoundBite are as follows;
IN QUIET CONDITIONS:
- I have noticed that speech recognition is almost perfect on both sides in quiet environments. I originally thought I didn’t need a hearing aid in these kinds of environments but after trying the SoundBite I noticed a difference, the voices and sounds are much clearer.
- Definitely helps with the directionality.
- I can hear even the quietest sounds, for example, when someone is whispering on my deaf side.
- While I am watching TV and someone is talking to me on my good side I can still hear the TV, which was a problem without the device.
- If I am chewing while watching TV (i.e. crackers or something crunchy) I can still hear the program, without the device I would sometimes have to stop chewing in order keep from missing something. It would seem that the SoundBite filters the sound of chewing.
- If I fall sleep over my AN side (while wearing the SoundBite) I don’t have feedback.
- I can wear a helmet and ride the motorcycle without any problems. I don’t get any feedback or discomfort.
- I can wear hats or beanies without any complication.
- When my husband is seated next to me, he likes to caress (by rubbing) my shoulder. Without the device, if he rubs my shoulder on my good side the sound would sometimes annoy me to the point where I would have to stop his hand. When I wear the SoundBite it does not bother me, I guess because I have hearing on both sides and my brain doesn’t concentrate on only the sounds from my good side.
- It is more pleasant to attend a lecture, everything is clearer.
- I can hear the noise of my rubbing fingers in my deaf side.
- If I lay down over my good side while wearing the device I can still hear.
- I can speak on the cell phone using my bad ear but sometimes I experience feedback.
- I don’t have feedback when someone gives me a big hug.
IN NOISY ENVIRONMENTS:
- It is very helpful in the theatres; I can usually hear, on my deaf side, when someone is whispering in the next row. I can also hear my husband commenting about the movie when he ends up seated on my deaf side.
- It helps in restaurants, I am able to hear what the waitress is saying and I am able to hear the person seated on my deaf side.
- While attending a concert (Metallica :-O ), I had problems holding a conversation while they were playing (I had an ear plug in my good ear) but my husband said that even for him it was next to impossible.
- At the supermarkets or grocery stores, as I have mentioned before, I consider my hearing to be about 55% of what it would otherwise be on the deaf side when wearing the SoundBite. I don’t know why but it seems that the sounds in supermarkets and grocery stores are just weird that way.
- Walking on streets with traffic and talking with someone on my deaf side is not a problem.
- When washing dishes while wearing the SoundBite, the sound of the running water from the faucet is less distracting, especially while holding a conversation with someone.
- I have noticed that the sounds of the ambulances or police cars are not as annoying while wearing the device, without it those sounds drive me crazy.
- The other day I heard a noise while driving my car which I could not hear when I took out the device. When I asked my husband to check the car he was surprised that I could hear the noise at all. It turns out the noise was not that loud and was coming from the tire in the back.
GENERAL COMMENTS:
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.
The BTE (Behind The Ear) is almost unnoticeable, the sound tube is transparent and thin and the part which goes behind the ear is small.
The doctors at Sonitus told me that the final device will be improved in both design and functionality. As I have posted before, in my 30 day follow up appointment I received a new ITM (I think it is part of the study plan). The new ITM battery has been lasting a minimum of 5 hours and I am told that by the time the final device is ready for market it is expected to get up to around 7 hours.
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.
I am very pleased to have been part of this trial and to have been given a chance to try out such a promising device. This device continues to give hope to a huge group of us with SSD who are waiting for something non-invasive. I am glad that the doctors are working on improving the lives of people like us with SSD.
SOUNDBITE IS SIMPLY AWESOME!
Thank you everyone for your comments, personal messages and encouragement. I will let you know if I have anything more to share.
For sure everyone is now waiting to hear from Carolyn (she will start the trial this month on the 18th), I know I am. Please share with us your experience Carolyn.
Best wishes to everyone,
Gloria
PS. I wanted to enclose a picture wearing the BTE but I don't know how.
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Brookes -
there are numerous posts about the BAHA on the Forum, as you say. Lots of them were created by me ;D
I absolutely adore my BAHA and can't say enough good things about it.
There is a BAHA demo that you can try and I personally (like most) found it very impressive. It cemented my decision to get the implant.
If you have any specific questions, please feel free to PM or email me (my email address is in my profile). Or start a new topic and you'll get lots of input - you'll find the majority of us aren't shy ;)
You might also want to check out www.cochlearamericas.com and www.cochlearcommunity.com
I'm a member of the Community - same user ID as here - and like this Forum it's free to join.
Best,
Jan
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Hi all!
Hey Gloria, I think I saw you in the office, but we were in different rooms & by the time I stood up from getting my mouth photos done, you were gone! At least it looked like you from your photo!
Carolyn,
If I new you had the appointment the same day I was there, I would have kept my eye out for you. I saw two ladies over there and a man, but I did not have idea that it could be you. I wish I could have met you. Perhaps in the future.
I am glad to know that the doctors at Sonitus are working on a special BTE for you, I am not in that group, so I can’t wait to know about your experience.
Now, I feel more comfortable and confident to go anywhere with my SoundBite.
Have a wonderful day,
Gloria
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Hi everyone,
It has been twenty five days since I got the SoundBite for my second trial. I got one BTE and two new ITMs little more comfortable than the first one I received in the first trial, and pretty much the same shape and size.
FEEDBACK.
I agree with Carolyn about the feedback, I too experience feedback with this device and I told the doctors about this issue but they said that they are not concerned about this because the new device that I will get after three months (two months more) will be totally different and improved.
A particular thing that I can say about this device is that the microphone seems to have a higher volume because the sounds are clearer than before (when I made the first trial), that may explain the feedback, but as the doctors said, the final device will not have that problem. Anyways, it is very nice to hear clearer.
TINNITUS.
I was carefully concentrating about how the SoundBite works with my awful tinnitus, and I can say that the ringing is the same. My tinnitus does not decrease or increase with or without the device, probably that is the reason why the device it is not as helpful in noisy situations as it is in quiet conditions. This group of doctors at Sonitus were also studying to find a solution for tinnitus, but they could not find yet a cure for SSD people with that problem, as Dr .Michael Murray remarked when I had this conversation with him. It is sad because the tinnitus is really annoying.
I had the chance to see the final models of the BTE and ITM, and WOW they are half size compared with the ones I am wearing now. The final charger is also different and more functional. Let’s see how does the final devices work. I can’t wait to try them.
I will keep posting.
Have a great day,
Gloria
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Hi Gloria.
I find this Soundbite invention very interesting. I guess it will come to Denmark, eventually.
In the next couple of weeks, I'm going to have my CSF leak fixed. I believe, they have to do a sub-total petrosectomy, and therefore also block some of the exterior ear canal.
How far does the device go into the ear?
Best regards, Kenneth
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I wonder if one of you would ask the company or whoever is running the trials, how physicians (and dentists) are being trained for distribution in areas outside of the Bay area? Do they have a list of doctors/ Dentists we will have access to, or will the first "customers" need to travel to the Bay area.
Debi,
Sorry for the delay in replying. I was told that SoundBite will be in the market on SEPTEMBER this year. Regarding your question above, I expect an answer from Sonitus very soon. I will let you know when I have their reply.
Take care,
Gloria
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Yippee!
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How far does the device go into the ear?
Hello Kenneth;
Thanks for your comment. When I read your post I started to research about "sub-total petrosectomy" and now I have an idea of how the exterior auditory canal could be affected with this procedure. I found this link of the anatomy of the ear http://www.hearingcenteronline.com/anatomy.shtml so I can explain you where exactly the wire goes into the ear. The BTE (Behind The Ear) has the microphone which goes behind the Helix (Nr. 1 in the diagram), and the transparent wire goes where the number 5 is in the diagram ( External Auditory Canal). I am not an ENT, so in order to have truly answer, I addressed your question to the doctors at Sonitus(by the way it is a good question), and as soon as I have their reply I will let you know.
I want to tell you that when I am placing my BTE I begin to hear if just the microphone is close to the ear. Anyways, let’s wait for Sonitus’ answer.
I wish you good luck in the CSF procedure. I will keep you in my thoughts and prayers.
Take care,
Gloria
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I wonder if one of you would ask the company or whoever is running the trials, how physicians (and dentists) are being trained for distribution in areas outside of the Bay area? Do they have a list of doctors/ Dentists we will have access to, or will the first "customers" need to travel to the Bay area.
Debi,
Regarding your question above, I expect an answer from Sonitus very soon. I will let you know when I have their reply.
Take care,
Gloria
Debi,
I just got the answer from Sonitus. It states as follows:
"We cannot train physicians until we get our FDA approval, which is intended for late summer or fall. Assuming that goes as planned, we will visit the offices of interested physicians in cities around the country and provide trainig. The process will take some time, but interested patients will not have to travel to the Bay Area. We will make a list of physicians who provide SoundBite available on our web site when we get to that point."
I hope you'll find this helpful.
Take care,
Gloria
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Hi Gloria.
In the next couple of weeks, I'm going to have my CSF leak fixed. I believe, they have to do a sub-total petrosectomy, and therefore also block some of the exterior ear canal.
How far does the device go into the ear?
Kenneth,
Regarding to your question, I just got the following reply from the experts at Sonitus. (This group of people is a very effective, efficient and well-organized team).
"The microphone component sits into the opening of the ear canal for retention. We are working on shorter microphones for reasons such as the one described in the question sent to you. I am sure we will have several options for those with surgical changes to their ear canal, pinna, etc. Lily Woodby, Doctor of Audiology."
Hope this can help you Kenneth.
Take care,
Gloria
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Hi, I have found this thread really interesting - is it on the market just in the USA from September? Would it be possible to ask
when they would expect to have the product available in the UK please?
I am so ready for some help with the SSD but don't want to go the surgical route, I've been looking into the Transear
but think the Soundbite might be just that bit better....
Thank you.
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Gloria,
thank you for your swift and kind response. I am happy to hear, that Sonitus is trying to solve every thinkable problem.
I look forward to new inventions in that area with comfort.
Best regards, Kenneth
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Thank you Gloria for the updates!
I am checking in every few weeks for your comments and try to share them with my daughter. (look forward to them as they do seem so positive) Wow, September and it may be smaller and provide clearer sounds.
Yay
Debi
Amanda's mom
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just googled to see if any info. updates on the Soundbite were on the web...
I just found this one recent article...if anyone is interested.
http://www.inhabitat.com/2010/05/24/soundbite-a-hearing-aid-that-transmits-sound-through-teeth-and-bones/
the last paragraph =
"The device is anticipated to obtain FDA approval and if it does, it will hit the market this summer for about $6,000 (compare that to surgery for a BAHA, which can run well over $10,000.) Sonitus Medical, Abolfathi’s company, plans to negotiate with insurance providers to reimburse patients for at least part of the cost. Other applications for the technology, including wireless, water-safe MP3 players and stealth communication for intelligence personnel, are also being considered."
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I am very interested in the comments about long term SSD prior to getting a BAHA. My SSD has been with me for 11 years and it was a sudden onset. When I saw Dr. Harris at UCSD, he did say that the longer you have had SSD, the less impressive the result may be from the BAHA. I did demo both the BP100 and the Ponto. I noticed more of a difference with the BP100. Again, everyone is different. However, though I did not feel the result was perfect, all I am really interested in is knowing that it will improve enough so that I know when someone is talking to me on the affected side, as well as being able to participate better in noisy environments (like restaurants). The audiologist told me that whatever improvement I felt with the demo, the reality would be up to 20% better (because of the "real" connection to bone). It was difficult for me to wear the demo for more than 2 hours at a time (even on a soft band) because of the appliance digging into my head and hurting! But, I know when it is attached to the abutment, it will be fine. I got to a point over about 7 months where I decided that some improvement was better than no improvement. I figured I have nothing to lose and everything to gain. So, I am set for June 30th. I will keep in mind what all of you said about having to wear it for a longer time to get a better affect. I know that I have acclimated to my SSD and have done pretty well adjusting over the years. However, in social and business situations, I truly need improvement and want to be able to stop saying "WHAT?" during so many conversations with multiple participants. I am tired of people thinking I am rude because I have no idea they are talking on my deaf side. So, I will give it however long it takes.
I agree with those who talked about the thought of a battery in the mouth being a deterrent. That, plus something in my ear would not be a good choice for me. I wish you lots of luck Gloria, and will be anxious to hear more about this device.
Dale
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mom,
That's great news! Thank you.
When I met with Dr. McKenna this afternoon for my one year plus post-op follow-up, he said he knows the people who designed the Soundbite. He said I might be a good candidate for it considering my concerns.
I do hope that the insurance company will assist with the cost.
Nancy
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Once the insurance companies realize that there is a bone conduction alternative for SSD that doesn't involve surgery they will be more than willing to pay for it over the BAHA.
Mei Mei
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Just a brief update. SoundBite has become my inseparable friend along these last few months. On nextTuesday (August the 3rd) I will receive the upgrade device which will be exactly how the final product will look like. I can't wait !!!
The other day I was in a reunion with at least 30 people talking and laughing, and music in the background, I could hear when my husband whispered in my bad ear " Let's go home" and I replied him "OK, I am ready", then he realized that he was talking to my deaf side and asked me: did you hear what I said? , I told him "yes, you said "let's go home". He stared at me with amazement and said: "IT'S UNVELIEVABLE !".
This is one of the numerous benefits that I get while wearing the device.
I just found that SoudBite ranks #1 on Cleveland Clinic's 'TOP 10' Medical Innovatios for 2010. Here is the link: http://www.clevelandclinic.org/innovations/summit/topten10/one.html
Will keep you all posted,
Have a great time,
Gloria
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Gloria ~
Congratulations on your amazing success with the SoundBite system! This is definitely a big leap forward in SSD solutions and you're helping lead the way!
Jim
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Gloria -
glad to hear that the SoundBite is working well for you ;D
Gives those of us with SSD one more option.
Jan
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Hi Gloria,
I visit this site every day for checking if some recent news exists from you. I am waiting your comments about final product impatiently.
Best Regards,
Koray
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Hi Gloria,
Maybe I'll see you there Aug. 3. My appt. is 1:45.
I have to say my experience thus far has not been as good as Gloria's. Since I cannot eat with it in my mouth, I'm finding I constantly pop it in and out during social events, which is when I desperately want it. Even at the movies w/popcorn, I have to remove the ITM to eat. I'm also getting horrible feedback on one of the ITMs.
I'm hoping & crossing my fingers that the new final product will be better! Check back for updates.
Carolyn
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I also am checking frequently to see your comments about Soundbite. Thanks for all the info.
Debi
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Gloria - thank you so much for starting this thread. It has been SO helpful to read about your experience with the Soundbite and you have been so unbelievably helpful and kind in getting everyone's individual questions answered. I am 29 years old and have been deaf in my right ear since birth. It has been really frustrating at times. I am a teacher and I get by pretty well all things cconsidered but I have been waiting for something non surgical to come along forever and I hope that this is it. I wasn't sure how much the device would help in the classroom setting, with all of the background noise but when you said that it helped at your reunion that seemed encouraging. I am eagerly awaiting your and Carolyn's latest update now that you both have the newest device. Thanks again!!
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Carolyn -
thanks for posting about your experience with this device while trying to eat. I truly feel this will be one of the big drawbacks of this product.
Kristinmarie -
if you haven't looked into a BAHA, you definitely should. I realize that your post said you are waiting for a non surgical option to come along, but the surgery is minor and the results are well worth it.
There are numerous people on the Cochlear Community (www.cochlearcommunity.com) who have been deaf since birth and found the BAHA to be a wonderful solution. I recommend reading some of their stories.
Just a thought,
Jan
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I've read all these comments with interest and tried to keep an open mind, but go back to leapyrtwins' comments from a year ago.....I did NOT want a hearing aid that showed, and am very suspicious of something in my mouth. I had absolutely no baha surgical problems and have now had my Otticon Ponto since July. It definitely helps, but I just wish I could get more volume without feedback. The audiologist says my brain is still adjusting and in about another month they will re-program my unit if I want, but to give it 60 days, first.
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While I didn't want a hearing aid that showed and I can't imagine having something in my mouth to help me hear, I totally understand that someone might not want a titanium rod drilled into their skull.
Just because it was my choice - and I'm happy with it - doesn't mean it's for everyone.
It's like the radiation vs surgery question for treating ANs.
So, for those who think the Soundbite will be a wonderful solution for them, I say "Go for it and good luck!!!" ;D
Jan
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Yes, I know what you mean exactly. I was going for BAHA before my AN surgery and then I started getting PostSurgical headaches which you said you don't suffer from. I get these headaches every night from three to five in the morning and sometimes during the day since Jan. I get them even when I sneeze. The thought now of having another knife to my head now with all these headaches makes me want to run to Timbuktu. You are so lucky not to suffer from headaches. I have to take the non--surgical route either Sonitus or TransEar. Right now I'm happy being SSD because finding a cure to these headaches is a 24/7 task to my life right now unfortunately.
Glad there are choices for us.
Mei Mei
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Apologies for not posting sooner. I went for my 3 month checkup & no new devices were ready! For now, I'm still stuck with the same ITM & BTE peices. I was expecting a smaller ITM & custom BTE.
On the bright side, I got to meet Gloria! It's so nice to meet someone who completely understands my situation.
So for now, no news. I will comment that no one will see the ITM...unless you tend to leave your mouth open...wide:)
Carolyn
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On the bright side, I got to meet Gloria! It's so nice to meet someone who completely understands my situation.
In my opinion, that's one of the best parts of the Forum; connecting with other AN patients and ultimately getting to meet them.
In the past month alone, I've personally met six ANers that I originally connected with through this Forum. And earlier today I met some others, that I didn't meet here, at a local ANA support group meeting.
We are excellent resources for each other. I'm looking forward to your next update, Carolyn.
Jan
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Hi Everyone,
It has been awhile since I have posted, my brother from Ecuador came to visit and honestly we had a really good time together. We were so busy and things were pretty hectic, I couldn’t make time to check this forum which I like to do so much. Anyway, here I am.
First of all, I was so happy to meet with Carolyn at Sonitus and to interact a little bit. She is a very nice lady.
I have to say that I felt disappointed when the doctors told me that I won’t be getting the smaller SoundBite just yet, apparently it is not quite finished yet. I did get two brand new ITM’s with the same external design as the ones that I had before but these ones have been lasting around 7 hours. I don’t know if they upgraded the batteries or the devices are more efficient but either way OOHOO! I am so happy, because the battery life has been my main concern.
Have a great time,
Gloria
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Thanks for the update Gloria...
Please let us know when you get the new one and how you like it. (It would be great if the batteries lasted longer, I soooo agree)
Any news from Sonitus is appreciated...their website has no new information and I am curious about the FDA approval, and where things stand in that process.
Thanks again for your updates.
Debi
(Amanda's Mom)
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I have been anxious for news...so emailed Sonnitus...
here is the reply:
We are currently in the process of seeking FDA clearance to bring the SoundBite Hearing System to market in the US. We have completed a clinical trial to support our FDA application, with an intended first indication of single sided deafness (SSD). As soon as the product is available (which we intend to be in the spring of 2011), we will get in touch with you with an update. In the meantime, our web site will be updated periodically with the latest news. We hope to be in touch again soon.
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Thanks, Mom! ;)
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I just thought I'd give a quick update regarding the Soundbite. A few weeks back I called Sonitus and found they are hoping to release the Soundbite in spring of 2011. But I was told to expect it to cost $6800. Reading over earlier messages in this thread, I noticed the price has crept up from $4000 to $6000 to now $6800. From the BAHA perspective, that's still reasonable. But from the hearing aid perspective, it's quite steep. Let's hope the real price is lower.
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That's really annoying...what an increase in terms of percent. There must be some control to this. I hope they are not greedy.
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Reading over earlier messages in this thread, I noticed the price has crept up from $4000 to $6000 to now $6800. From the BAHA perspective, that's still reasonable. But from the hearing aid perspective, it's quite steep.
Actually from a BAHA perspective, the processor (tiny hearing aid) is cheaper. My first processor - a Divino - cost my insurance company $4,000; I didn't pay a dime.
When I upgraded my Divino to a BP100 (now modified into a BP3) I paid in the neighborhood of $2,600 or $2,900.
So unless you count the cost of the implant surgery, the BAHA would actually be cheaper than the Sonitus.
And in addition, the BAHA implant and surgery are both generally paid by insurance. So if the Sonitus is lucky enough to get implant status, insurance should cover it. If it gets classified as a hearing aid, insurance won't cover it.
I know there was talk of the Sonitus getting implant status, but I still can't see it. From what I understand, nothing about it is permanent; it is a removable device. On the other hand, the BAHA rod is a permanent fixture in the skull.
Jan
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The big jump in price for the Soundbite might be due to costs encountered during the trial period associated with getting a good fit and with working out the bugs. If that's the case, I suspect the price may drop over time. Regardless, $6800 gives me pause and I will have to see a lot of glowing reviews before considering jumping into the bleeding edge of this product that has raised our hopes so high.
And for those of us who shutter at the thought of implanting something into our skull, $6800 for a non-invasive alternative does put the BAHA in a different perspective.
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Steve H -
as I said, the BAHA is not for everyone.
And, respectfully, I am offended by your comment that "the thought of implanting something into your skull" makes you shudder.
Personally, and again respectfully, I can't imagine wearing something in my mouth to help me hear, in addition to having to also wear something in my ear.
Life is full of choices. What may not be right for me, may be right for you - and vice versa.
I chose surgery to treat my AN, but I'd never say that choosing radiation would have made me shudder.
We aren't on the Forum to "knock" each others choices - just to help each other out.
Best,
Jan
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Jan,
I apologize if my comment was offensive. That definitely was not my intent. And as you said, we're all here to share knowledge and to help each other out. And this site is indeed the best place I've found to share our experiences.
Steve
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Apology accepted.
Have a nice day ;D
Jan
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The Clinical trial for Soundbite has officially ended. I am still on the fence about my review of the device but am also torn because I do miss hearing!
The fact is, it works!
The down side, I never did get to try the new, smaller ITM piece & it also looks like there will be no custom BTE piece.
So, none of my fit & feedback issues were ever resolved and I have no idea if they have actually addressed the battery issue. That said, I personally would be hesitant to spend any money on the product, out of pocket. I guess it's kind of like computers. You never want to buy the new first version because all the bugs will be fixed later. I am still seriously considering a BAHA & now am looking into the BP3 or the other one that just came out, but, my leanings would be towards the tried & true BAHA.
I personally found the SoundBite to be a bit cumbersome. It really aggravated me in my social environment when I couldn't chew food. It seems like snapping something to my head would be alot easier, strange as I know it must sound:)
I believe the SoundBite to have true potential & will work for most people, but also feel it shouldn't be rushed thru the R&D process so the product will be exemplary.
It would be interesting to hear what the other people in the trial have to say.
Thanks,
Carolyn
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I am still seriously considering a BAHA & now am looking into the BP3 or the other one that just came out, but, my leanings would be towards the tried & true BAHA.
The BP3 isn't a new BAHA processor that just came out. It's a BP100 that's been modified. The BP100 made it's debut in August 2009 and it's had a few issues along the way. In September 2010 Cochlear started to correct those issues and the BP3 was born.
Cochlear is in the process of developing an upgrade to the Intenso (stronger than the BP100/BP3) but hasn't released any information on when it might be available to the public.
I've had some issues with my BP3 - more than I ever had with my Divino, which hasn't had any issues. But, it stands to reason. My Divino has only one channel and isn't programmable. My BP3 has 12 channels and is highly programmable. With new technology "glitches" can occur. But despite the issues I've had with my BP3, I'm extremely happy with it - the sound quality blows the Divino away and it works much better in noisy/crowded environments. I'm also extremely happy with the customer service I've received from Cochlear. IMO their customer service is stellar.
Jan
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The Clinical trial for Soundbite has officially ended. I am still on the fence about my review of the device but am also torn because I do miss hearing!
The fact is, it works!
Hi Everyone,
My trial is over too and my life is limited again. There are no words to explain how much I miss my SoundBite. It worked for me, and so far it is the best solution I can go for, since I don’t want another surgery in my head.
With this second trial (still with the original model because I didn’t get to try the smaller one) my comments are:
• The device lasted about seven hours of service. I wish Sonitus improved this issue.
• The quality of the sound was the same as the device of the first trial, which is a clear/stereo sound.
• It helps with the directionality.
• In quiet conditions I could speak by phone with my bad ear without experiencing feedback.
• In quiet environments I didn’t miss anything of a conversation or sounds.
• It helps with the speech recognition.
• In noisy environments I didn’t find any advancement in this second device. I told Dr. Murray (Sonitus’ mentor) that I wish it worked the same as it does in quiet conditions. Still helps, but not too much, unless the other person speaks very close to the bad side; in this case, it is possible to hear even if that person is whispering.
• Before I finished the trial, I went to the dentist to have a check, especially of my teeth where the ITM was placed, and he didn’t find anything wrong or unusual; my teeth are intact.
• It doesn’t help with the tinnitus; unfortunately this horrible issue remains in my brain all the time :(.
• I made a comment to Dr. Murray that in the last six months, during the trial, I had migraines only a couple times, and I felt so happy for it, because I have been having constant migraines after the surgery. I am not sure if the device was helping me with this issue, even the doctor didn’t know.
Carolyn,
It is sad that Sonitus couldn’t improve your ITM and I can imagine how hard it was for you to take it out every time you had to chew something; fortunately, now we have other choices like Baha to improve our hearing condition, and I really hope you can find the solution for your hearing with this device. In addition, I think that when you get the Baha, your comments and comparisons between Baha and SoundBite will be extremely helpful for us, since you could be the first person in having experience with both devices. I wish you the best and I am glad to have met you.
Have a good day,
Gloria
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I was told "No Baha because of yearly MRI'S" the alternative sounds good!
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I was told "No Baha because of yearly MRI'S" the alternative sounds good!
Dizzy -
this is TOTALLY inaccurate information. You can have MRIs with a BAHA. My BAHA implant was done in March 2008 and I had an MRI of my head in April 2008, April 2009, and April 2010 without issue. I'll be scheduling my next MRI in April 2011.
The BAHA "equipment" is made of titanium and therefore MRIs aren't a problem at all. BAHA wearers do need to detach their processor before going into the "tube", but the only other thing that is required is telling the tech that you have a BAHA implant. For some reason they like to know this.
Also, just another FYI. A BAHA implant isn't an issue with airport security either - because it's titanium it won't cause you to "beep" when you go through the metal detectors.
Jan
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Hi,
in quite environments I don't need any hearing aid because I don't even realize that one of my ear is deaf. So in the office or at home I think I will remove ITM device out of my mouth if I use soundbite. The environments which I realize that my left ear is deaf is and I can not communicate with people is below;
* during lunch time in cafeteria when there are a lot of people talking arround and one of my colleagues sits on left side of me and tries to talk to me
* if I am travelling in my friend's car ( during driving there is no problem because my right ear is well ) sitting on the right and the CD player is turned on ( or the sound of the engine or traffic is loud enough ) I can not hear what my friend is saying easily. Because of this reason I usually prefer to go arround with my own car because it is a disgusting experience otherwise.
* walking in the street with a lot of traffic sound when my friend walking on left side of me tries to talk to me I have to change my position in order to take him on my right side
if soundbite will not help me in above situations it will have no use for me.
Best Regards,
Koray
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Koray -
I can't speak for the Sonnitus, but a BAHA will help you in all the situations you mention.
It won't be like having your normal hearing back - nothing currently on the market can do that for you - but it's a huge improvement over being SSD in my opinion.
Jan
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Hi Jan,
as I said before I need an hearing aid during only %10 of my lilfe, so a removable device is a better option for me. I think that BAHA is more useful for women because it can easily be hidden inside of your hair and it is nearly invisible, but this is not the case for men. Because it is removable and more invisible I will prefer Soundbite to BAHA if both have the same efficiency.
From an engineer point of view I think that if BAHA is effective in the situations I mentioned before than Soundbite must work well in the same situations also, because they both use the Bone Anchoring principle to transmit sound from actuator to cochlea. The only difference between two devices is in the way they transfer signals from microphone to the actuator. BAHA transfers signals to the actuator directly while Sounbite transfers this signals to the actuator via radio signals.
As you are using BAHA for years and you give positive comments I am confident that the device is useful in noisy situations, but according to comments from Gloria I suspect that Soundbite is not so effective in noisy situations. Maybe the noisy enviroment she meant is a Metallica concert as she said before. In this case there is no problem. I don't expect to hear in such an environment, but if soundbite does not work when you try to talk to your friend on the deaf side in a reasonable loud restaurant then it is a problem. What is the point of having an hearing aid which is not usefull when you really need it?
I will ask from Gloria to give more details about the situations which Soundbite is not usefull.
Thanks,
Koray
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Thank you for this nice explanation. I really also don't want more surgery to have a hearing device. I am only going to consider the non-surgical devices as they have the amplification that I need. (I don't need to go to an Metallica concerts ;D ;D)
I am however going to wait until Sonnitus releases the smaller devices that people have talked about here and are not getting to take home. This will come in time.
Take care!
Mei Mei
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Hi Koray,
Your explanation is very concise. Thanks.
According to your comments, you have a very good hearing in your good side, as I do. Thanks God!. The first time I went to Sonitus for the trial, in the questionnaire they requested me to fill it out, they asked about the needs in quiet situations, my responses where that I practically didn’t need any aid in those situations because my hearing was pretty good. I am SSD three years now and I thought I needed the aid only in noisy environments, because in that kind of situations I feel completely deaf since I can't hear anything clear, all that I hear is a huge confusion of words and noises, making my tinnitus even worse. When I tried SoundBite, I realized that my hearing was not as good as I thought. As soon as I put the device, the amplification was “WOWâ€, everything was so CLEAR. I agree with you Koray, that our hearing it is not a big deal in a very quiet environment, but hearing clearer, trust me, you feel a lot better. Add to this the ability to localize the cell phone that keeps ringing and you can’t remember where did you leave it.
When I am watching TV and suddenly someone begins to speak, I can not understand anything, not the Tv, nor what someone said, so, when I am watching Tv as a family, I have to beseech them to try to be quiet. With the SoundBite, this was not a problem anymore. I posted before that I could even chew something extra crunchy and still could hear the TV, because the sound of my chewing did not interfere with my hearing.
I will try to answer your questions in a very explicit manner:
LUNCH TIME
I was able to hold a conversation while I was eating in a restaurant (with people around talking, laughing, the Tv on, or background music, I could hear what my peers were saying at both sides. If I have to talk in terms of percent, I would say that I was able to improve 50% my hearing on my deaf side, which is much less compared with the utility in quiet conditions, in which I could say my hearing improved about 80%.
WHILE DRIVING
My husband likes to drive with the radio on (am radio KGO :) ), While wearing the SoundBite I could hear him (I am left side deaf), and because this station is all news and comments, my husband likes to talk to me while he is listening; sometimes when he turned the radio very loud (I guess because the sound of “am†is not very clear) I had difficulty in understanding him, but in general I could hold a reasonable conversation. I was also able to hear when my son in the back seat was talking. When I drove, of course I could hear better to the person on my right side, and also helped me to be aware of the traffic on my left side.
WALKING ON THE STREET.
When I had the SoundBite I wore it to run. It was a pleasant experience to be able to hold a conversation with my co-runner at my left side. Since I run two miles in the streets until I get to the trail, it helped me to be aware of the traffic as well. Without the device, I prefer to run alone. So my answer is YES, I could hear to the person talking at my deaf side while I was walking. Intentionally, I was trading places in order to test this issue.
I found out that SoundBite it is not very useful in crowded places like shopping centers or supermarkets (I still can hear but not as much I would have liked).
Have a good day and Happy Thanksgiving to everyone,
Gloria
-
Koray -
totally understand. The BAHA is definitely not for everyone.
Just for the record, I know just as many men who wear BAHAs as women who wear BAHAs. Vanity isn't always an issue when it comes to being able to hear ;)
Jan
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Yes, but the less surgery the better. Some of us are plain tired of surgery. I'm first in line!
Thanks!
Take care,
Mei Mei
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Thanks for all your valuable comments and explanations. We can better understand each other as all of us live similliar problems every day. I am a Turkish guy and I want to come to US as soon as Soundbite is available in the market. I feel very happy when I share my feelings and opinions with you. Maybe I can meet some of you when I come there.
Best Regards,
Koray Korkut
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You're welcome to come here. My grandmother was from Istambul and went to the Austrian Gymnasium for school. That was more than one hundred years ago.
I live in Washington, DC area, but you'll probably go out to California for Sonitus. The San Francisco bay area is a great place for a vacation.
Best wishes to all of us. We have much to be thankful for.
Happy Thanksgiving everyone!
Mei Mei :)
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Koray,
If you come to America, I would be very glad to meet you. I live in the beautiful state of California.
Have a wonderful day,
Gloria
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Jan, Thanks so much for the information it's hard to believe the Doctor doesn't know that the Baha is made out of titanium.
-
Dizzy -
you might want to check out www.cochlearamericas.com under "Find a Clinic".
Jan
-
What is SSD?
-
Singlw Sided Deafness
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Gloria, Have you tried the sound bite yet? I am very interested in this. I had microsurgery for a right AN in June 2010 and have almost complete hearing loss in that ear. My surgeon said I would not be a candidate for a hearing aid but could have the BAHA implanted. At 5 month post op, I was not ready for any more surgery but am annoyed with not hearing in my right ear. I was wandering how the sound bite worked and if you found it successful/ Tweety/ Nancy
-
Tweety -
whether you opt for a BAHA or not is a personal decision.
I just wanted to note that the surgery is absolutely nothing like AN surgery. This was one of my biggest concerns too, and it was totally without foundation.
BAHA implant surgery is a quick, simple, outpatient surgery. Most docs even give you the choice of general anesthesia or local anesthesia (with or without sedation). I chose local with no sedation and was wide awake during the entire procedure. Not something I'd have even considered with AN surgery, if it were even possible.
Jan
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After much thought, I have decided to get the BAHA. So, I'm keeping my fingers crossed as it is in the process of being preapproved by my insurance!
Although the SoundBite did work, indeed, it was not quite the perfect fit for me. (see my previous posts on this thread: fit issues, eating issues).
My reason for choosing BAHA:
I have excellent health insurance & might as well get it now if they will cover it,
My son is growing & will be more involved in "group" outings,
My biggest issue w/SSD is LOCATION, I simply cannot find anything!
I already have pins & metal plates in my legs...another piece of titanium is no big deal!
I'm only getting older :), & it will really be useful if my hearing diminishes like my mom who now has only 50% left!
SoundBite is still in the process of being FDA approved, so if I qualify, I'll still try to get one as backup.
So, keep your fingers crossed for me for the BP3!
Thanks,
Carolyn
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Great news, Carolyn!
As a BAHA wearer myself, I can say with confidence that I think you'll love your BAHA.
If you're going with a Cochlear processor and run into insurance coverage issues, contact Cochlear's OMS division; they'll help out.
Good luck!
Jan
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Checked Sonitus website today and found: YAY.
http://www.sonitusmedical.com/sonitus/news/single-sided-deafness-treatment.cfm
"SoundBiteâ„¢ Hearing System Receives FDA Clearance for Treatment of Single Sided Deafness"
San Mateo, California (January 27, 2011) – Sonitus Medical, Inc., a medical device company that manufactures the world's first non-surgical and removable hearing prosthetic to transmit sound via the teeth, today announced that it has received FDA clearance for its SoundBite Hearing System. The FDA 510(k) clearance is the first for the company and the product.
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Oh Halleluya! At long last! Congratulations, Sonitus!
Mei Mei ;D
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I've just discovered this news this afternoon. I'm so tired of SSD. Has anyone contacted Sonitus to learn when clinics will begin to open? I'm willing to travel. Thanks. Nancy
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I send them an email on their website. Last year they returned my email right away, but this time there has been no answer for several weeks. They must be inumdated with emails regarding the FDA approval. I too am anxious to move forward and am considering going to Tennessee to get a TransEar fitting instead. This is taking too long.
Mei Mei
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Hi I got this email from Sonitus Medical recently,
Best Regards,
Koray
Dear Koray,
Thank you for your interest in Sonitus Medical.
We are extremely happy to announce that the SoundBite Hearing System now has FDA clearance for the treatment of single sided deafness (SSD). We are working rapidly to bring the product to the US market beginning this summer (2011) with the goal of having SoundBite available at a significant number of physician offices nationwide in the fall. Please check back with our web site for updates on where the product is available and other news. We hope to be in touch again soon.
Sincerely,
Sonitus Medical, Inc.
www.sonitusmedical.com
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Thanks, Koray. I am looking forward to the fitting at long last.
Mei Mei
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Hopefully they'll get the product down under as well!
laz
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I hope so or you are welcome to come here and get fitted. We'd love to see you here.
Mei Mei :)
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Hi everyone,
This week I received a call from Sonitus, so I have a little update to share with you guys. Sonitus is very busy right now, they are working on getting the coverage from insurances companies. In addition, they are training the physicians whom will be able to work with the SoundBite around the USA. The device might be available for all of us on Mid-July 2011. The waiting is almost over.!
I just checked Sonitus’ website, and I found that the pictures of the device have not been updated yet. For instance, the final SoundBite’s charger is different, the real one looks much better in functionality and appearance.
Have a good day,
Gloria
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I have decided to get the BAHA. So, I'm keeping my fingers crossed as it is in the process of being preapproved by my insurance!
Carolyn,
I hope everything went well with your insurance’s approval to get your BAHA. I am anxious to know about your experience, since you can make comparisons between SoundBite and Baha. Despite, the fact that the “ In The Mouth†system (ITM) didn’t work well for you due to your alveolar ridge issues, at least you were able to experience the hearing while wearing the SoundBite, even if only briefly.
Please keep us posted whether you got your Baha yet or not. Your information will be highly valuable.
Take care,
Gloria
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Gloria, Have you tried the sound bite yet? I am very interested in this. I had microsurgery for a right AN in June 2010 and have almost complete hearing loss in that ear. My surgeon said I would not be a candidate for a hearing aid but could have the BAHA implanted. At 5 month post op, I was not ready for any more surgery but am annoyed with not hearing in my right ear. I was wandering how the sound bite worked and if you found it successful/ Tweety/ Nancy
Nancy, I'm sorry! I didn't response your post. I hope it is not too late. Yes, I tried the SoundBite, and I posted a review a year ago when I was finishing my trial. I copied it and I paste here below. Please let me know if you have further questions.
"My experiences during this time with the SoundBite are as follows;
IN QUIET CONDITIONS:
- I have noticed that speech recognition is almost perfect on both sides in quiet environments. I originally thought I didn’t need a hearing aid in these kinds of environments but after trying the SoundBite I noticed a difference, the voices and sounds are much clearer.
- Definitely helps with the directionality.
- I can hear even the quietest sounds, for example, when someone is whispering on my deaf side.
- While I am watching TV and someone is talking to me on my good side I can still hear the TV, which was a problem without the device.
- If I am chewing while watching TV (i.e. crackers or something crunchy) I can still hear the program, without the device I would sometimes have to stop chewing in order keep from missing something. It would seem that the SoundBite filters the sound of chewing.
- If I fall sleep over my AN side (while wearing the SoundBite) I don’t have feedback.
- I can wear a helmet and ride the motorcycle without any problems. I don’t get any feedback or discomfort.
- I can wear hats or beanies without any complication.
- When my husband is seated next to me, he likes to caress (by rubbing) my shoulder. Without the device, if he rubs my shoulder on my good side the sound would sometimes annoy me to the point where I would have to stop his hand. When I wear the SoundBite it does not bother me, I guess because I have hearing on both sides and my brain doesn’t concentrate on only the sounds from my good side.
- It is more pleasant to attend a lecture, everything is clearer.
- I can hear the noise of my rubbing fingers in my deaf side.
- If I lay down over my good side while wearing the device I can still hear.
- I can speak on the cell phone using my bad ear but sometimes I experience feedback.
- I don’t have feedback when someone gives me a big hug.
IN NOISY ENVIRONMENTS:
- It is very helpful in the theatres; I can hear on my deaf side, when someone is whispering in the next row. I can also hear my husband commenting about the movie when he ends up seated on my deaf side.
- It helps in restaurants, I am able to hear what the waitress is saying and I am able to hear the person seated on my deaf side.
- While attending a concert (Metallica :-O ), I had problems holding a conversation while they were playing (I had an ear plug in my good ear) but my husband said that even for him it was next to impossible.
- At the supermarkets or grocery stores, as I have mentioned before, I consider my hearing to be about 55% of what it would otherwise be on the deaf side when wearing the SoundBite. I don’t know why but it seems that the sounds in supermarkets and grocery stores are just weird that way.
- Walking on streets with traffic and talking with someone on my deaf side is not a problem.
- When washing dishes while wearing the SoundBite, the sound of the running water from the faucet is less distracting, especially while holding a conversation with someone.
- I have noticed that the sounds of the ambulances or police cars are not as annoying while wearing the device, without it those sounds drive me crazy.
- The other day I heard a noise while driving my car which I could not hear when I took out the device. When I asked my husband to check the car he was surprised that I could hear the noise at all. It turns out the noise was not that loud and was coming from the tire in the back.
GENERAL COMMENTS:
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.
The BTE (Behind The Ear) is almost unnoticeable, the sound tube is transparent and thin and the part which goes behind the ear is small.
The doctors at Sonitus told me that the final device will be improved in both design and functionality. As I have posted before, in my 30 day follow up appointment I received a new ITM (I think it is part of the study plan). The new ITM battery has been lasting a minimum of 5 hours and I am told that by the time the final device is ready for market it is expected to get up to around 7 hours.
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.
I am very pleased to have been part of this trial and to have been given a chance to try out such a promising device. This device continues to give hope to a huge group of us with SSD who are waiting for something non-invasive. I am glad that the doctors are working on improving the lives of people like us with SSD."
All best,
Gloria
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This is all very exciting news, my doctor here in Arkansas is checking to see when the soundbite might be available to all of us. He talked to the manufacturer and felt confident that when it is available that insurance will cover at least some of the cost. Keep the updates coming folks!
DJ
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Thank you for this update. I can't wait to get fitted and back to the hearing world again.
Mei Mei
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I just noticed that this topic has had 13,938 views! I think everyone is hungry for good news.
debi
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I sure am. The doctor at GW said they will start fitting in September. I can't wait!
Mei Mei
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Does anyone know if there will be any opportunity to see this new device/technology at the ANA conference this summer?
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Not sure if the exhibitors at the Symposium are all finalized or not (someone at National would know). However, I hope Sonitus is smart and has someone there because a large portion of the attendees have hearing deficits in one ear only ...... certainly a good place to get the advertising word out.
Clarice
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Good point. I'm going to write to someone I know there and remind him.
Mei Mei
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Does anyone know if there will be any opportunity to see this new device/technology at the ANA conference this summer?
CNY,
I addressed your question to Sonitus, and here it is the answer: "Right now we are not planning to be there. I'll look into it though and see if it's something we should consider for the future." (Jason Shelton).
All best,
Gloria
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That's too bad. They are missing a great opportunity. I'm sure the other companies will be there.
Mei Mei
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Just checking in to see if there are any updates.
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It looks like Sonitus (the company behind soundbite) will be exhibiting at the 5th International Conference on Acoustic Neuroma June 28-July 1, 2011 (Hyatt Regency Century Plaza, Los Angeles). This conference is geared toward medical providers but the program schedule includes many topics discussed on the ANA discussion boards. I don't believe the conference is open to the public.
http://www.an2011.org/
As far as I can tell from their website this is the first time the International Conference on Acoustic Neuroma has been held in the U.S.
--Greg.
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Greg,
Thanks for posting this conference information. Quite a few of the participants are names that are very familiar. I hope that some of the discussions, etc. will filter down to this forum. Wouldn't it be great if one of our forumites could attend and report on items of interest?
Catherine (JerseyGirl 2)
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I'm going to the symposium and wish Sonitus would be there also. I'm considering the BAHA, but would be interested in the Soundbite. I plan on getting information on all the different options available for me and then making a decision. Right now the SSD isn't too bad, but at times I do notice it.
Sandy
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Well Sonitus unfortunately was not there, but I did get an opportunity to see and hold the TransEar. The doctor at GW said they would begin fitting for Sonitus in August, so I will go there to try it out and make a decision between that and the TransEar. I wrote to a friend who is a developer of the Sound Bite and he sent me all kinds of information not to worry about the EMFs in the SoundBite. I can send that if you like.
Mei Mei
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Just checked the Sonitus website. There is a link to soundbitehearing.com that shows locations of practitioners at this time. Pittsburgh is my closest option, so I'll contact Dr. McKenna's office at Mass Eye and Ear to see if they've got it in the works. He knows the developers personally, so I'd think they would be attempting to set up a practice at MEEI. What a life changer this would be for me! Psyched!
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Nancy - Mass Eye and Ear is not yet an official provider but Soundbite is in contact with them to become one of the early adopters by October. Pittsburgh is accepting appointments though. The earliest that the device will be available is August 11th.
Mei Mei - I would love any information that you have.
So exciting!
Kristin
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I'll search my email and copy and paste what the developer said. He is a Dental Professor and very nice. I am going to GW Hearing Center in Wasington, DC. They are beginning in August.
Mei Mei
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Thanks, Mei Mei. l look forward to reading what the developer wrote. Good luck with the process. Are you close to DC? I live in NYC so I am going to have to fly to Pittsburgh, but if it all works out it will be totally worth it.
Kristin
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I'm going to the NYC Meeting on July 16th. Will you be there? You could take a Vamouse bus to DC easier and meet with Dr. Monfared at GW. He just moved here from Stanford University and is really nice.
Here is what my father's contact in California said when I sent this thread's question about the Sound Bite and EMFs. First he sent an email asking if I were worried about EMFs and before I had a chance to answer him, he sent this:
Hi Mei Mei,
For FDA approval, the device had to pass numerous tests and must meet many standards. EMF was one of the most obvious and easiest questions to address as there are many independent testing companies that provide this service.
The main standard was IEEE C95.1 "IEEE Standard for Safety Levels with Respect to Human Exposure to Radio Frequency Electromagnetic Fields, 3kHz to 300 GHz".
A third party independent testing firm reported that the Soundbite components produced such negligible EMF at levels so far below IEEE C95.1 thresholds that SAR measurement was not required (much less than 1% of threshold). There are other international standards that are even stricter than C95.1 and although the devices were not tested against those other standards, the emitted EMF is so negligible that those would be passed as well if they were required.
However, negligible is not absolutely zero. As with all things, we have to make our own individual risk-benefit analysis and much of that is perception and value. I hope this helps.
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I didn't even know about a meeting in NYC on July 16th. What is it for? Unfortunately, that's the same day that I am leaving for vacation. I would definitely consider seeing Dr. Monfared. I don't see him listed on Soundbite's list of doctors. Is he already accepting appointments and will he have the Soundbite by August? I am a teacher and I would love to have the device before school starts back up in September. That's good news about EMF's. I hadn't even thought to worry about that aspect. Thanks so much. Have you spoken to anyone about insurance coverage so far?
Kristin
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I'm making an appointment for August because he said he was ready for August to start with SoundBite. He gave me a bunch of his business cards because I keep meeting people that are hard of hearing and I want to help them so I asked him for some brochures and cards. Too bad I won't see you at the meeting. You can always stay here if you need a place when you are getting your SoundBite fitted. I just don't know why NYC doesn't have some hearing center. What about Weill-Cornell with Dr. Selesnick or NYU or Mt. Sinai?
Don't just depend on the website because I don't think it is up to date.
Keep in touch. I just retire as a high school teacher so I know what you mean when you want to be ready for the first day of school.
Mei Mei
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Mei Mei,
Thank you so much for the valuable information. It is good to know that we don't have to be worried about EMF issues if we decide to go for SoundBite.
All Best,
Gloria
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You're most welcome. I even worry about small amounts and stay away from my microwave. My friend won the Nobel Prize in Physicis and is now a Secretary of Energy. He doesn't have a microwave at home.
Just never can be too careful. I will move forward with the SoundBite in August.
Mei Mei
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Hi everyone,
I know most of us visited the new website for SoundBite. I just received this message from Sonitus and I want to share this information with you guys:
" Rejoin the
Conversation
this August
The SoundBite Hearing System
is Coming Soon!
Thank you for your interest in Sonitus Medical. Since receiving FDA Clearance for the treatment of Single-Sided Deafness and Conductive hearing loss, Sonitus Medical has had a tremendous response from physicians, potential patients, and individuals who know of someone suffering from single-sided or conductive hearing loss.
We are pleased to announce the launch of www.soundbitehearing.com, for our product, the SoundBite Hearing System, the world’s first non-surgical and removable hearing solution that relies on bone conduction to imperceptibly transmit sound via the teeth.
Visit the new site to get answers to common questions, find a Soundbite physician near you, or view testimonials from delighted patients who have experienced the Soundbite hearing solution. You can also reference other important information such as product updates, device animations, and more.
SoundBite will be available starting this August through physicians and audiologists in select markets in the U.S. with expansion across the nation over the next six to nine months. Please continue to check www.soundbitehearing.com for updates on clinic availability and to access a growing list of participating providers.
Thank you for following our progress and watch for more SoundBite updates soon!
Sincerely,
The Sonitus Medical Team "
I'll keep in touch,
All best,
Gloria
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I got an email from Dr. Ashkan Monfared at GW Hearing Center yesterday to make an appointment. I have one for July 26th and so does someone from NYC on the same day!
I hope the insurance goes through OK. I am concerened about getting the first Soundbite as there will be more to come in a year or so.
Hugs to all...I am excited.
Mei Mei
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Dr. Monfared said he only knows of three places dispensing the Soundbite in our area:
South Carolina, GW and Boston.
Hope all of you find a solution to the SSD problem. I decided to go ahead with it because I keep losing my balance. Even when a person hugs me and steps back I have to hold on to something or I'll fall over. Don't like feeling like a delicate flower.
Am looking forward to this. ;D
Mei Mei
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Wasn't LADavid for the Brainport? There was a lady who did the Sound Bite.
Cheryl R
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that is what I was thinking too...
K ;D
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Kaybo and Cheryl -
I think you guys are right. I don't think LADavid did a Sound Byte trial; it was Brainport from my recollection.
Jan
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:) I had my appointment with Dr. Monfared this afternoon and was told that I would have to pay next month sometime $750. and they would submit for the $6,000 balance. This was a surprise I wasn't ready for because when I last heard, the price was only $4,000. They are very sure that insurance will reimburse which is why the small up front payment. They were approved by the FDA not as a hearing aide but as a device (20+ years ago I used to work on device applications to be submitted to the device section of the FDA, so this point is critical). The piece that goes in your ear is really tiny (she said the original was much larger). The piece in the mouth didn't look so bad. My father has been wearing a clip in tooth on his upper molar for the past 50 years and he never complains...that clip in tooth is much bigger than the SoundBite, so I'm cool with that piece of the puzzle. Besides, I wear a night guard for my tooth grinding which fills up my entire mouth, so this is nothing compared to my night guard and my CPaP. The first time my grandson climbed into my bed with me doning my Cpap and night guard, he screamed for his MAMA. Poor baby must have thought I became an alien!
They said Sonitus would do the filing and I'll get my nurse practitioner and ENT doc to write supporting letter that I need this to hear I guess for safety so that I can hear what's coming from my right side. Once they hear that this accomplishes for alittle under $7,000 help for SSD patients without the expense of surgery, they might prefer the insured patients to opt for the non surgical option and do away with the surgery. I'm looking forward to be turning on with all the other GW SSDers in Sept.
Sorry I missed Kristin who came down this morning for an appointment with Dr. Monfared and the audiologist. She was here last week to get the fitting with the GW dentist.
I'm looking forward to not have to strain my Cervical discs which are full of arthritis, herniated discs and stenosis. Constantly turning to the other side to hear someone gives me a pain in the neck. Also when I'm driving I can't hear the person in the driver's seat or the oncoming traffic. I keep thinking of more and more reasons why United Healthcare should pay for this solution to my SSD.
Following up with the excision doc in September so my book is full of exciting changes for the better in September.
Happy Day! ;D
Mei Mei
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Mei Mei ~
Congratulations on moving forward with your Sonitus appliance. I hope it delivers what you need with few hassles and that insurance will pick up the balance of the cost, as you've been told. Frankly, the elation in your post is infectious! I wish you a great September! :)
Jim
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Once again, Thank you, Jim. I thought about it all night and decided to call the United Healthcare Nurse Case Manager assigned to me because of my many problems. She told me not to let them go ahead with the paying upfront $750 and signing away my rights should the insurance not come through for me. She told me it was too big a risk to take and gave me the phone numbers to call and fax. I want them to pre certify my device before we proceed so that I don't get stuck in a corner. They told me they would appeal after a denial and appeal up until one year and then work out a payment plan for me to pay the $7,000. Next month they would charge my card $750 and would get that back once Sound Bite payment is approved. I am not happy with this plan and told everybody so. It's sticking my neck out like a giraffe. If they (Hopkins and Georgetown) can pre certify my surgeries, why can't they go to bat like the surgeons do and get everything to pass smoothly for MOI!!!! and believe me MOI is important as Miss Piggy says. They told me once the year is up, they would work out a payment plan for me to pay off the $7,000. and the $750 which is immediate. I wrote to the docs involved and to my primary care, ENT, nurse practitioner to request clinical notes and a letter from them to support my "Pre certification" and included the dentist who was part of the invention of the Sound Bite and holding partnership in the organization. I told him to tell the President whom he sees that they are getting off on the wrong foot as far as I am concerned. I would rather continue SSD than be a giraffe and stick my neck out for $7,000. I just want to let all of my Forumites out there not to let them corner you into liability of $7,000. It's too risky. The onus should be on them to get the pre certification just like our surgeons and Occipital Nerve Block pain docs do. What makes them so special that they make you give them the credit card information and say that you are billable after one year if our insurance refuses. Yes, Dr. Monfared said they are nice. Nice is nice, but this is business and I won't proceed unless they get off their buts and get the paperwork done to pre certify. I did my homework, let them do their homework the get the BUCKS.
Below is my as usual frank notes to the medical professionals and United Healthcare:
Fwd: Sonitus Pre determination request information from Dr. Douglas Feldman
Reply
Seroun Wang to physicians
show details 5:33 PM (2 hours ago)
To Dr. Feldman
I am coming in to see you next week just to ask you for help with the
Sonitus Soundbite pre-determination. I am also coming in to see if
you have any suggestions about my breathing and exercise tolerance
from the paralyzed vocal cord. I went to the Acoustic Neuroma
Assoc. Symposium last month in Cincinnati and met with several
physicians from Mayfield and House Ear Insitute and they all noticed
my breathing as I talked with them. So did the doctors in Neuro at
Georgetown.
Thanks again and looking forward to meeting you and discussing this.
Sincerely,
Seroun M. Wang
---------- Forwarded message ----------
From: Seroun Wang <seroun@gmail.com>
Date: 2011/7/27
Subject: Fwd: Sonitus Pre determination request
To: Ashkan Monfared <amonfared@mfa.gwu.edu>, Rachel Lazaro
<rlazaro@mfa.gwu.edu>, Ben Wu <benwu@ucla.edu>, Dr Theodore Li
<tli@foxhallinternists.com>, Maureen Moriarity <mmscrnp@hotmail.com>
I hope you don't mind my changing the signature line to read "pending
pre-authorization" This is what my United Heathcare Case nurse case
manager told me to do to keep things clean and straightforward for me,
the patient. I have to protect myself and I hope you will
understand. It is too much of a risk. I'm sure Sonitus will
understand. They can wait and I can go in the next batch of
patients, but I am pretty sure that this way the Nurse Case Manager
advised me to do is protecting me. I am recently retired on
disability and home taking care of my 97 year old father so there are
many things going on in my life.
I am asking Dr. Li, my primary Care doctor, Dr. Feldman, my ENT doctor
and Dr. Maureen Moriarity to send over what UHC predetermination has
requested. I am acting fast on this. The requests to them have
already been sent out, so I expect a decision very soon from
Pre-determination.
Thank you, Ben for the information on the EMFs and IEEE requirements
which I ran by five of my father's colleagues who are all Fellows of
the IEEE. Please tell the Sonitus President the next time you see him
my feedback. As I told the Audiologist yesterday, we are treading on
unchartered waters and I believe that they are starting off on the
wrong foot.
CC: ANAUSA.org: Hearing thread on Sonitus...Good News for us so
that everyone interested will know how I think they should proceed.
Take care all and best wishes,
SMW
---------- Forwarded message ----------
From: Seroun Wang <seroun@gmail.com>
Date: Wed, Jul 27, 2011 at 4:16 PM
Subject: Sonitus Pre determination request
To: Maureen Moriarity <mmscrnp@hotmail.com>
Dear Dr. Moriarity, Dr. Feldman and Dr. Li:
I hope you are doing fine and cool today. Tomorrow it's supposed to
warm up again.
I wanted to ask you a favor. I went to see Dr. Monfared yesterday
about the hearing device and he told me everything about how we would
proceed. They are getting the first group of patients all fitted and
we will be given the devices sometime in September with the entire
group at the same time....like a party.
The major problem I have with this is that he and Sonitus plan is to
have me submit $750. 00 in September and they would file the
additional $6,000 + and if it gets denied, they would work on it for
one year and then if no reimbursement comes through at the end of the
year, they would work out a payment plan. I called my assigned Nurse
Case Manager at United Healthcare and she said NO NO No. Don't do
that. Get it pre-authorized before you proceed. I faxed over to
the Sonitus Medical Order and Insurance office the forms the
audiologist gave me yesterday but I crossed out the part that they are
allowed to bill my credit card for the initial $750. I wrote next to
it: Pending Pre Authorization, but I included my American Express
number ... not giving them permission to bill to it. I am expecting
them to push for pre-authorization just as Johns Hopkins and
Georgetown did for my surgery and Physical Therapy. This is the
first time they are doing this and they are treading on uncharted
waters. I want to apply for pre-authoization and not have to wait
to get back my $750. and then get billed $6000 +
She told me to call Pre authorization Claims Dept and they told me to
have my doctor call (they prefer a call because they said it would be
faster OR Fax medical reports, clinical records and a statement from
you as to why I need this hearing device. It has to be called a
device not a hearing aid, otherwise it won't get reimbursed. It was
approved by the FDA under Devices and I think is being filed as a
prosthetic device.
The number to call in the report is: 1 866 297 9393 Care
Coordination Dept.
Fwd: Sonitus Pre determination request information from Dr. Douglas Feldman
Reply
Seroun Wang to physicians
show details 5:33 PM (2 hours ago)
To Dr. Feldman
I am coming in to see you next week just to ask you for help with the
Sonitus Soundbite pre-determination. I am also coming in to see if
you have any suggestions about my breathing and exercise tolerance
from the paralyzed vocal cord. I went to the Acoustic Neuroma
Assoc. Symposium last month in Cincinnati and met with several
physicians from Mayfield and House Ear Insitute and they all noticed
my breathing as I talked with them. So did the doctors in Neuro at
Georgetown.
Thanks again and looking forward to meeting you and discussing this.
Sincerely,
Seroun M. Wang
---------- Forwarded message ----------
From: Seroun Wang <seroun@gmail.com>
Date: 2011/7/27
Subject: Fwd: Sonitus Pre determination request
To: Ashkan Monfared <amonfared@mfa.gwu.edu>, Rachel Lazaro
<rlazaro@mfa.gwu.edu>, Ben Wu <benwu@ucla.edu>, Dr Theodore Li
<tli@foxhallinternists.com>, Maureen Moriarity <mmscrnp@hotmail.com>
I hope you don't mind my changing the signature line to read "pending
pre-authorization" This is what my United Heathcare Case nurse case
manager told me to do to keep things clean and straightforward for me,
the patient. I have to protect myself and I hope you will
understand. It is too much of a risk. I'm sure Sonitus will
understand. They can wait and I can go in the next batch of
patients, but I am pretty sure that this way the Nurse Case Manager
advised me to do is protecting me. I am recently retired on
disability and home taking care of my 97 year old father so there are
many things going on in my life.
I am asking Dr. Li, my primary Care doctor, Dr. Feldman, my ENT doctor
and Dr. Maureen Moriarity to send over what UHC predetermination has
requested. I am acting fast on this. The requests to them have
already been sent out, so I expect a decision very soon from
Pre-determination.
Thank you, Ben for the information on the EMFs and IEEE requirements
which I ran by five of my father's colleagues who are all Fellows of
the IEEE. Please tell the Sonitus President the next time you see him
my feedback. As I told the Audiologist yesterday, we are treading on
unchartered waters and I believe that they are starting off on the
wrong foot.
CC: ANAUSA.org: Hearing thread on Sonitus...Good News for us so
that everyone interested will know how I think they should proceed.
Take care all and best wishes,
SMW
---------- Forwarded message ----------
From: Seroun Wang <seroun@gmail.com>
Date: Wed, Jul 27, 2011 at 4:16 PM
Subject: Sonitus Pre determination request
To: Maureen Moriarity <mmscrnp@hotmail.com>
Dear Dr. Moriarity, Dr. Feldman and Dr. Li:
I hope you are doing fine and cool today. Tomorrow it's supposed to
warm up again.
I wanted to ask you a favor. I went to see Dr. Monfared yesterday
about the hearing device and he told me everything about how we would
proceed. They are getting the first group of patients all fitted and
we will be given the devices sometime in September with the entire
group at the same time....like a party.
The major problem I have with this is that he and Sonitus plan is to
have me submit $750. 00 in September and they would file the
additional $6,000 + and if it gets denied, they would work on it for
one year and then if no reimbursement comes through at the end of the
year, they would work out a payment plan. I called my assigned Nurse
Case Manager at United Healthcare and she said NO NO No. Don't do
that. Get it pre-authorized before you proceed. I faxed over to
the Sonitus Medical Order and Insurance office the forms the
audiologist gave me yesterday but I crossed out the part that they are
allowed to bill my credit card for the initial $750. I wrote next to
it: Pending Pre Authorization, but I included my American Express
number ... not giving them permission to bill to it. I am expecting
them to push for pre-authorization just as Johns Hopkins and
Georgetown did for my surgery and Physical Therapy. This is the
first time they are doing this and they are treading on uncharted
waters. I want to apply for pre-authoization and not have to wait
to get back my $750. and then get billed $6000 +.
---------- Forwarded message ----------
From: Seroun Wang <seroun@gmail.com>
Date: 2011/7/27
Subject: Fwd: Sonitus Pre determination request
To: Ashkan Monfared <amonfared@mfa.gwu.edu>, Rachel Lazaro
<rlazaro@mfa.gwu.edu>, Ben Wu <benwu@ucla.edu>, Dr Theodore Li
<tli@foxhallinternists.com>, Maureen Moriarity <mmscrnp@hotmail.com>
I hope you don't mind my changing the signature line to read "pending
pre-authorization" This is what my United Heathcare Case nurse case
manager told me to do to keep things clean and straightforward for me,
the patient. I have to protect myself and I hope you will
understand. It is too much of a risk. I'm sure Sonitus will
understand. They can wait and I can go in the next batch of
patients, but I am pretty sure that this way the Nurse Case Manager
advised me to do is protecting me. I am recently retired on
disability and home taking care of my 97 year old father so there are
many things going on in my life.
I am asking Dr. Li, my primary Care doctor, Dr. Feldman, my ENT doctor
and Dr. Maureen Moriarity to send over what UHC predetermination has
requested. I am acting fast on this. The requests to them have
already been sent out, so I expect a decision very soon from
Pre-determination.
Thank you, Ben for the information on the EMFs and IEEE requirements
which I ran by five of my father's colleagues who are all Fellows of
the IEEE. Please tell the Sonitus President the next time you see him
my feedback. As I told the Audiologist yesterday, we are treading on
unchartered waters and I believe that they are starting off on the
wrong foot.
CC: ANAUSA.org: Hearing thread on Sonitus...Good News for us so
that everyone interested will know how I think they should proceed.
Take care all and best wishes,
SMW
---------- Forwarded message ----------
From: Seroun Wang <seroun@gmail.com>
Date: Wed, Jul 27, 2011 at 4:16 PM
Subject: Sonitus Pre determination request
To: Maureen Moriarity <mmscrnp@hotmail.com>
Dear Dr. Moriarity, Dr. Feldman and Dr. Li:
I hope you are doing fine and cool today. Tomorrow it's supposed to
warm up again.
I wanted to ask you a favor. I went to see Dr. Monfared yesterday
about the hearing device and he told me everything about how we would
proceed. They are getting the first group of patients all fitted and
we will be given the devices sometime in September with the entire
group at the same time....like a party.
The major problem I have with this is that he and Sonitus plan is to
have me submit $750. 00 in September and they would file the
additional $6,000 + and if it gets denied, they would work on it for
one year and then if no reimbursement comes through at the end of the
year, they would work out a payment plan. I called my assigned Nurse
Case Manager at United Healthcare and she said NO NO No. Don't do
that. Get it pre-authorized before you proceed. I faxed over to
the Sonitus Medical Order and Insurance office the forms the
audiologist gave me yesterday but I crossed out the part that they are
allowed to bill my credit card for the initial $750. I wrote next to
it: Pending Pre Authorization, but I included my American Express
number ... not giving them permission to bill to it. I am expecting
them to push for pre-authorization just as Johns Hopkins and
Georgetown did for my surgery and Physical Therapy. This is the
first time they are doing this and they are treading on uncharted
waters. I want to apply for pre-authoization and not have to wait
to get back my $750. and then get billed $6000 +
She told me to call Pre authorization Claims Dept and they told me to
have my doctor call (they prefer a call because they said it would be
faster OR Fax medical reports, clinical records and a statement from
you as to why I need this hearing device. It has to be called a
device not a hearing aid, otherwise it won't get reimbursed. It was
approved by the FDA under Devices and I think is being filed as a
prosthetic device.
The number to call in the report is: 1 866 297 9393 Care
Coordination Dept.
If instead you want to fax or do both because I think faxing the
records from your hard drive might be easier, then the Fax Number is
pre determination fax 866 756 9733
The website for the device is SonitusMedical.com. They are in San Mateo, CA
I hope this works. Thank you for your help.
Sincerely,
Mei Mei
The number to call in the report is: 1 866 297 9393 Care
Coordination Dept.
If instead you want to fax or do both because I think faxing the
records from your hard drive might be easier, then the Fax Number is
pre determination fax 866 756 9733
If instead you want to fax or do both because I think faxing the
records from your hard drive might be easier, then the Fax Number is
pre determination fax 866 756 9733
The website for the device is SonitusMedical.com. They are in San Mateo, CA
I hope this works. Thank you for your help.
Sincerely,
Mei Mei
-
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 >>>
- Show quoted text -
Reply
Reply to all
Forward
Reply
Seroun Wang to physicians, Ashkan, Ben, Rachel, Shelly, csleger, Maureen
show details 3:47 PM (1 hour ago)
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
-
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
-
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.
-
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
-
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 ::)
-
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
-
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
-
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
-
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
-
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
-
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 :)
-
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
-
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
-
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
-
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
-
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)
-
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
-
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
-
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
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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
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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
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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
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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.
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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
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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
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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! ???
K ;D
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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
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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
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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! ???
K ;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.â€
- 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 “awkwardâ€. 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
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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
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Thanks, Gloria!! ;D
K ;D
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Thanks for the answers Gloria. I think I understand things a little better now - and the link really helped.
Appreciate your responses,
Jan
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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
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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
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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
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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.
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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
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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?
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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
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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
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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?
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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
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Thanks. Do you know if the soundbite might have any affect on reducing ear ringing or white noise coming from that ear?
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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
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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
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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
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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
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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
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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
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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
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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
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Is there any trouble wearing the soundbite with sunglasses?
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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
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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
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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
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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
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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
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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
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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
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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?
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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
Good point Jan!! Although I have to add from ALL the research I have done.....there are many 'myths' that can be out there because people that have heard things in the past just still think that way. And YES both companies have made GREAT strides on things overall.
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I appreciate the posts on technology advances. It's indeed comforting that we live in a time where we see advances everyday. The analogy of the iPhone is a good one, or digital cameras. I remember when I first went digital in 2001. I was so excited about my 1 MP. Now I have a camera that is 18 MP. And computers continue to get faster and faster and storage, cheaper and cheaper. It is truly heartening.
It's fascinating that this thread within Hearing Issues is the most popular. There have been 20252 views and 301 Replies as this post. It actually may be the most popular thread on the entire site! It's clearly a sign that we're all looking and hoping for that next great advance! And using a camera analogy, I'm hoping that it's even better than 18 MP version!
I did get a call from Sonitus Medical on Friday letting me know that they're looking to get the device into the Boston market by the beginning of the year. They're working with a provider and it's just a matter of time. That's great news for Massachusetts.
Looking forward to reading more from existing users to learn from their experience.
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I'm eagerly waiting Arasha's next update on the sound bite! I'm looking at going for a consultation by the end of the year.
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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?
Hi Phillies,
Your question doesn't bother me at all. If you have any questions or you need clarifications please feel free to ask. The piece that goes into the ear canal (at the end of the translucent wire) is a small soft piece, it doesn't go deep. I do not know the purpose of this piece because I begin to hear in my deaf side just if I hold the BTE next to my AN ear. My guess is that the piece helps to hold the BTE unit behind my ear. I don't feel like I am wearing an ear plug and it is very comfortable.
I cheched Sonitus' website and it doesn't show exactly how this piece looks like, so I took a picture of my device but I forgot how to attach it here. Any ideas?
Take care,
Gloria
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Thanks. When you on the screen where you can type a reply, above that that there are a bunch of icons you can press. One is to insert a link and one is to insert a image. As long as you have your picture uploaded to photobucket or similar site you're good to go. If not, you can send the picture to my personal email if you want and I can upload it for you.
And since I asked you how comfortable that end piece is that goes into the ear, how's the comfort of the ITM piece? Any issues when eating?
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Thanks. When you on the screen where you can type a reply, above that that there are a bunch of icons you can press. One is to insert a link and one is to insert a image. As long as you have your picture uploaded to photobucket or similar site you're good to go. If not, you can send the picture to my personal email if you want and I can upload it for you.
And since I asked you how comfortable that end piece is that goes into the ear, how's the comfort of the ITM piece? Any issues when eating?
Thanks Phillies,
It worked the way you described! Here there is a picture of the BTE unit and another picture of the ITM piece. The penny in the pictures is to give you an idea of the sizes.
(http://i921.photobucket.com/albums/ad59/Arasha07/DSC01302.jpg)
(http://i921.photobucket.com/albums/ad59/Arasha07/DSC01301.jpg)
The ITM unit it is not very comfortable, it is like having a piece of candy inside of my mouth. After 10 hours of wearing the ITM, my mouth gets a bit sore, similar to when I wear a new pair of shoes and after a certain time of wearing them I just want to take them out (just an example). There is no problem when eating, but I have to rinse the piece after meals.
Take care,
Gloria
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Thanks for the pictures. Thanks for your honesty but I must say I'm a little disheartened to hear that the ITM piece is not very comfortable. But from seeing your picture, the ITM is bigger than I thought it was. :'(
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Arasha,
You said that you start to hear before you even put the ear piece into your ear canal. Does the hearing improve or different at all when that end piece is actually in the ear canal?
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Thank you everyone for posting and making this thread so interesting! I came across it a few weeks ago and read it from the beginning. All the questions and answers have made this thread very useful, full of information and hope!
And thank you Gloria for starting it and keeping posting your observations!
Mei Mei, your observations ab insurance policy are unbeatable!
I am currently unemployed without any insurance. Even if I find a job, I believe that an insurance company will cover only future problems and not existing prior to be insured. (I moved to the US three months ago since I married an American boy and have never had private insurance before. in my home country Bulgaria we have only government insurance)
Regardless of everything, I still find the thread very interesting and useful!
Please keep posting!
Thank you very much everyone for your enthusiasm and sincere comments!
Have a great weekend (Friday is the day before the weekend so it counts :P)
Hrissy
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It's fascinating that this thread within Hearing Issues is the most popular. There have been 20252 views and 301 Replies as this post.
Ross -
this fascinates me too, especially since this thread is mainly about the Sound Byte.
I've had conversations with three docs from this area recently who have decided not to carry this product since they believe it will not be popular among those who are hearing impaired. And I have to point out that these 3 docs are all from different practices. Not only do they feel it's not a product that will "take off", they don't see it as cost effective for their practices to offer it; too much work involved in bringing it to a patient.
I've spoken to several audiologists who agree with these docs.
The entire concept of the Sound Byte is one I personally can't imagine - and I'm not sure if that's only because I'm a highly-satisfied BAHA wearer.
That said, it's wonderful that companies keep thinking of new and different solutions for those of us who are SSD.
Jan
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Jan - Thanks for your insights. You certainly got interesting responses from the practitioners. But since the product is barely new on the market, it would seem pretty difficult to gauge whether it will be immediately popular. Given that it takes some pretty hefty funding to get to market, Soundbite must have made a reasonable case to the venture capitalists to warrant the investment. They would have had to have shown usage projections and a robust rollout plan. It's simply too soon to tell.
You said something pretty interesting..."The entire concept of the Sound Byte is one I personally can't imagine - and I'm not sure if that's only because I'm a highly-satisfied BAHA wearer." You're one lucky gal...you're fortunate in being able to say that you are completely satisfied. I agree with you...you can't imagine because you've had no reason to consider other options. But, there are plenty of BAHA wearers (or ex-wearers) who have not had that great experience and they've certainly issued their disappointment aplenty on this site. I'd also guess that there are some people out there who may feel the same "can't imagine" feelings about the BAHA. Not everyone can get comfortable with the idea of having a permanent abutment in one's skull.
All I can say is thank goodness there are choices out there and that there's an opportunity for many healing paths. Clearly there isn't a one-size-fits-all model yet, so let the innovations continue!
Of course, the greatest invention would be the creation of magical ruby slippers. You put them on, click your heels together three times and repeat "there's nothing like hearing, there's nothing like hearing" and all of a sudden your deaf ear becomes completely restored. I'd sign up for that invention any day of the week.
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I see Dr. Roland at NYU is now a provider of the soundbite. Glad to see there is now a dr in the NYC area for the soundbite. I keep checking this site everyday to see if Arasha made her detailed report on the Soundbite yet :-\
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Ross -
you have to read the BAHA posts more carefully.
The majority of BAHA wearers who are unhappy are unhappy with their processors - and granted, there have been numerous issues for those who wear the newer Cochlear devices.
I don't think it's a fair statement to say that these people are unhappy with the BAHA - they just need processors that function properly. BAHA wearers who have Oticon processors - which have had virtually no problems related to them - are very happy.
Thankfully I'm a Cochlear wearer who is very happy, and as you point out, I'm one lucky girl. I'm also happy to have found the solution to my SSD and frankly, I'm quite proud that it involves sporting a permanent abutment in my skull. And also, quite frankly, I really don't care what others think of it; it works for me.
Ultimately I hope that those who choose a Sound Byte are happy and proud of their decision.
I'm not knocking them and even if I happened to be, my opinion of them doesn't matter. To each his/her own.
Jan
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All info about Soundbite welcome!
So I have been SSD for about 2 1/2 years now and I decided to do something about
it. I am getting tired of turning my good ear into peoples faces so I can hear at partys.
I went to NYU today and learned about all the hearing aids that were available For SSD. And what insurance pays for. They will pay for an operation but they will not pay for a hearing aid. How stupid are they. Anyway I am leaning between the Soundbite and BAHA Pronto. I really do not want another operation and I love the fact that I get just take off the Soundbite aid when I want to. Has anyone else out there tried Soundbite?
marybeth
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Marybeth -
I haven't tried the SoundByte, just wanted to mention that the BAHA implant surgery is absolutely nothing like AN surgery.
It's typically done outpatient and you can even choose local (as opposed to general) anesthesia if you want.
My surgery was done with local and it was fast, easy, and painless.
Jan
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Hi everyone,
I apologize for being absent all these weeks. I haven’t had the time to check the forum. Sorry about that.
Today has been exactly one month and 23 days since I got my SoundBite and I am ready to narrate my feedback.
As you guys know the SoundBite is composed of two units, the ITM and the BTE.
The ITM (In The Mouth) unit:
I was surprised to find that the ITM was made to wear on my good side, I wasn’t expecting this because in the trial I was wearing it on my AN side. As it turns out this was perfect for me because I prefer to chew with my good side due to my facial palsy issues. I asked the doctor why they chose to fit on the opposite side and she told me that the reason is to get clearer and neater sound.
We all know that it is not comfortable to have something in our mouth, even braces are uncomfortable for me. The ITM is the unit that is going to make users want to hesitate about getting the SoundBite. The piece is does not seem as small as the previous version and I am guessing that it is to avoid swallowing it. The first two weeks I was struggling with the fitting and I was a bit sore, sometimes I just wanted to take it out of my mouth. The good news is that in that short time I have become accustomed to it and now wearing it is A PIECE OF CAKE!!. I don’t even realize it’s in my mouth.
The BTE (Behind The Ear) unit:
I can’t complaint about anything; the piece is a small one and is VERY comfortable. It allows me to wear glasses, helmets, beanies, hats without any discomfort.
HOW DOES IT WORK IN NOISY SITUATIONS?
IN A RESTAURANT. Imagine a room with +- 40 people and a band playing jazz. I purposely sat next to a person on my deaf side. The result…. I could hold a conversation! Sometimes when the band was too loud I had to cover my good ear and I realized that in these situations, with my good ear covered while it was too noisy, I was actually able to hear very well on my deaf side. I tested my hearing many times, with and without the device, and it does really make difference because without the device I was almost completely deaf.
IN A GROCERY STORE; I can hear the cashier, even though I can't perfectly hear, it is clear enough to hold a conversation . Without the device I am practically reading lips.
IN THE THEATRE. While watching a movie, if someone tries to talk to me on my AN side, they have to come closer. You know, in those situations people speak quietly. So, if that person is about one foot apart, I was struggling with the hearing, but when they came closer, the sound was clear enough to hold a conversation. So I trained my husband to talk to me closer. Even if he whispers I can hear very well if he is close enough to me.
IN A CLUB. Don’t get me wrong, I don’t party often, but they recently opened a new club in town and I wanted to see if I could survive a night out on the town. I asked my husband to take me to the club all the while knowing it was a very noisy place but I thought it would be a good test. While in the club, if my husband spoke to me very close, I could hear him and was able to hold a conversation. If he was more than one foot apart it was hard to hear him but I suspect most people with normal hearing would experience nearly the same thing.
IN A LECTURE. The SoundBite is very helpful in these situations. I currently attend college and although my classes are not too noisy, I found that the sound of the heater fan was disturbing my hearing. I always had to sit in the first row in order to hear the teacher over the heater. With the SoundBite, the lecture was clearer and the sound of the heater was less bothersome. One day, while wearing the SoundBite, I had to sit in the very last row and even then I was able to manage to hear the lecture. Oddly, even now, when the teacher assigns us to work in groups it is not uncommon for me to have some difficulty in hearing my classmates in my group. I can only assume the acoustics in that situation are not conducive. The desks are completely round and seat four people but in the class there will be maybe nine round tables each with a group of student’s discussing aloud. I can only guess it the acoustics because the arrangement is not too different from what you might find in a restaurant and yet I haven’t been experiencing this issue in restaurants. Weird.
IN THE MATH LAB. Labs have tutors who are helping students by explaining and answering questions. Imagine a room with at least 35 students and 6 tutors plus the noise of the heater. I was very impressed when I could hear the flipping pages from the student seated next to my AN side! I must admit it was very close to my ear but still! Imagine! That was awesome.! I was so amazed that I immediately called my husband to share with him this incredible situation. When a tutor was talking to me in my AN side the hearing was almost perfect! Without the device, I could still hear but not that clear.
ON THE PHONE. When I put the phone on my good side, I don’t feel like I can’t hear anybody else because my good side is busy and I am otherwise deaf for the rest of the people around me. When the SoundBite is in I can clearly hold a conversation on the phone on my SoundBite side, no feedback at all, and it leaves my good ear free to hear when someone is asking me something. This I consider to be VERY helpful.
WEARING HEADPHONES. Sometimes I like recording my lectures, so later I can listen to my recordings while doing homework. I realized that when I wear my headphones while wearing the device I can hear on my both sides. It gives the impression that I have the sound equally in both sides. In addition, if I wear the headphone in one ear I can still hear if someone comes to ask me something. I can hear very well if I wear the headphone in my bad ear, so I allow my good ear to hear my surroundings.
IN QUIET CONDITIONS:
My good ear works very well in quiet conditions whithout the SoundBite. However I have to admit that my hearing improves a lot when I am wearing the device.
DIRECTIONALITY:
When I was doing the clinical trial I reported some directionality while wearing the previous version. Sadly, I found out that I don't have directionality with the current SoundBite. I tested many times and I realized that I don't have directionality while wearing the device.
I have to stop here, but I will continue my report tomorrow... It is past midnight...
All best,
Gloria
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Thank you for posting this information. I went yesterday to NYU to get fitted for
one. I think I am the first one at NYU to get one so everything is a bit uncertain. One
question I have for you is that I too have facial palsy so I like to chew on my good side.
The fit me for the soundbite on my bad side. Is that right? I asked them to put in on my
bad side because of the synkiness. When I chew on my bad side, my eye closes so I
always chew on my good side. Is yours on your good or bad side?
Marybeth
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Gloria,
thank you for your detailed comments and experiences you shared with us. I am visiting this site a few times a day in order to check latest news from you. SSD is a very isolating situation and your experiences with Soundbite fills my heart with hope.
Best Regards,
Koray
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Hi everyone,
Continuation…
ON THE PLANE.
I was exited to find out how my SoundBite works on the plane. I was curious about this because the last time I flew I was wearing the Transear and I had a hard time; first, I instantly experienced plugged ears, I couldn’t hear and then I fell in a horrible ear pain. With the SoundBite I had a pleasant trip, nine hours on the plane. I wore the device the whole trip, the noise of the turbines didn’t interfere with my hearing. I sat in the aisle seat and my husband next to my good side. I was able to have decent hearing. I could even hear when the attendant was asking to the passengers what they would like for breakfast even though he was in the opposite side from where I was seated. The hearing was not very clear but it was enough to understand.
IN THE SALON:
Imagine a room with the TV playing loud, not too many people in the room, 6 or 7, I was having a pedicure while the massage machine was running on my back and the water on my feet making a Jacuzzi effect. It was noisy on all sides. I was wearing the device but I couldn’t hear well, sometimes I had to ask twice when someone was talking to me.
THE BATTERY:
The battery of the ITM lasts 8 to 8 and ½ hours. When the battery is going to die, it gives me the warning sound.
Regarding to the BTE, I haven’t had the chance to experience when its battery is running out. The manual instructions say that it lasts up to 15 hours. The most that I wore the SounBite has been 10 hours and the BTE was still running, so I really don’t know how long does it last.
THE CHARGER:
The device comes in a box that charges the three units at the same time. When I have to go outside and I know I will need the other ITM I just take the box with me. If I keep the units inside the charger, although it is not connected to the power, the charger holds the power of the units. The manual says that holds up to 42 hours. I yet didn’t have the chance to test it.
THE CLEANING.
For the ITM: I dissolve Efferdent in water and put it in for 15 minutes.
For the BTE: just clean with a Qtip.
MY CONCLUSIONS.
When I got my SoundBite, one of my ITMs didn’t fit well and it was hurting my gums (The device set included two ITMs and one BTE). Sonitus has excellent service, as soon as I reported to them that my ITM failed, they asked me to have a new impression (I paid $150,oo from my pocket), but I was impressed that they made the new ITM for me in ONE DAY and had it delivered to my house the next day! They knew I was leaving the country and they really made an effort to work fast and very efficiently to get it to me in time. I wouldn’t expect that kind of service all the time but it is nice to know that they are so committed.
I had some issues with the BTE, a small part that connects the microphone with the BTE broke twice. The doctor at Sonitus told me that engineers are working on this issue, since they have had other complaints for the same reason. Currently I am on a trip out of the USA for three weeks, before I left home I told the doctors that I was worried if the small piece breaks again, because when that happens, I don’t have hearing service. Sonitus’ team immediately assisted me and provided me an extra piece to change it just in case (the doctor previously instructed me how to do it). In my opinion they should work promptly on fixing this issue.
One day I decided to go without the SoundBite and pretending that I was wearing it, just to try the placebo effect. I ruined my day with that decision. While I was walking to my classroom, I didn’t realize that a classmate was walking next to my bad side, she touch my arm to call my attention, she was just saying hi and I didn’t hear her. I felt frustrated, embarrassed and sad. The whole day I had to be aware of who was on my deaf side and constantly turning around just in case someone was saying something. I didn’t want to interact with anyone and I just wanted to go back home and put on my SoundBite. It’s amazing how a small piece can make the difference. SoundBite is not perfect. I wish the ITM was smaller and I wish also it was located on my bad side, because of my facial issues. Overall I am very happy with the device. SoundBite has opened for me paths that were closed before.
I know there are two more persons in this forum that are getting the device. How exiting! Phillies and M4Guzman please post your experiences. My suggestion is to allow at least three weeks until you accustomize to the SoundBite. We all are in the same boat. I miss my natural hearing a lot. Since I had my AN surgery my life changed forever but I won’t give up until I find something close to my natural hearing. Thank God the technology is progressing each day!
All best,
Gloria
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One question I have for you is that I too have facial palsy so I like to chew on my good side.
The fit me for the soundbite on my bad side. Is that right? I asked them to put in on my
bad side because of the synkiness. When I chew on my bad side, my eye closes so I
always chew on my good side. Is yours on your good or bad side?
Marybeth
Maybeth,
I am so happy that you are about to get your SoundBite. I just posted more feedback about my personal experience, please read it. My device is fitted on my good side. I honestly don't like that because I also have synkinesis and I prefer to chew with my good side. My eye also closes every time I chew with my bad side. I am glad that you had the option to chose which side you would like to wear it. I didn't have that option :(
I still can chew with my good side, but it is more comfortable to chew with my non-ITM side.
Take care,
Gloria
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Arasha,
Thanks for the detailed update. When you first posted on here last month about how you just got the Soundbite and would post an update shortly I was checking this forum several times a day eagerly awaiting your update! lol When I had my first post op audiogram last month at the local audiologist they told me about the Phonaz Cros so I thought I'd give that a try first before going to try the Soundbite. I was amazed how well the Cros works, and from reading your post it probably works as well as your Soundbite. Maybe better in some situations and maybe worse in others... Consdering the Cros will save me 5 or 6 thousand, I'm going to stick with the Cros and I cancelled my appt for the Soundbite. For all of you who are thinking about getting a BAHA, i would suggest trying out either the Soundbite or in my case the Cros first. You might be amazed how well they actually work... Just like with Arasha, I went to a loud crowded bar and heard an entire conversation on my deaf side.
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Hi Philly,
I did not get the Cros because my Insurance would definitely not pay because it
was considered a hearing aid. I am glad it worked for you. I am getting a bit nervous
about getting the soundbite since I really could not try it out but I am hoping for the best.
I will get you updated.
Marybeth
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Gloria - Thank you for your detailed assessment. You have no idea (or maybe you do!) how helpful it is. Everytime I can't hear someone on my AN side, I think about your success. I'm looking forward to Soundbite coming to Massachusetts so that I can manage it locally. I keep pestering them to let me know...they had indicated that they were looking to make this happen by the end of 2011, but it hasn't happened yet.
On a very positive note, I did play in a band today. I was at the keyboards. I had SO much fun! I was at first skeptical that I would be able to hear myself play, but even with all the "noise" I did great. My colleagues literally called me a rock star! Okay...so I may be a bit hearing challenged, but I still have it :-)!!
Much thanks to the ANA community for finding the humor and grace in all of this. Honestly...it's a lifesaver over and over again.
Keepin' the faith, always - rjo
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I want the soundbite for my daughter who is only 22.
...but so far no doctors listed in the Northwest (Seattle).
Waiting is fustrating...I wouldn't mind going to the Bay area but...if anything went wrong or it didn't fit as Gloria experienced it would be so hard to keep flying there for follow ups.
Well anyway...good news is what keeps everyone hopeful so thank you for all the input.
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Happy to report that I got the soundbite this week. I've been completely deaf in my left ear for five years so I'm very excited. I will give it a few weeks and post how I am doing. So far I'm loving it!
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I am looking forward to hearing more about the Soundbite. My husband won't consider a Baha and the ssd is hard for him to deal with. The
Soundbite sounds very promising and its great to be able to get reports from you. Was yours covered by insurance?
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Happy to report that I got the soundbite this week. I've been completely deaf in my left ear for five years so I'm very excited. I will give it a few weeks and post how I am doing. So far I'm loving it!
Hi GOING2LA,
I'm happy for you !. It will take a few weeks until you get accoustomed to the SoundBite. Your comments will be highly valuable for this forum.
All best,
Gloria
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Happy to report that I got the soundbite this week. I've been completely deaf in my left ear for five years so I'm very excited. I will give it a few weeks and post how I am doing. So far I'm loving it!
Hi GOING2LA,
I'm happy for you !. It will take a few weeks until you get accoustomed to the SoundBite. Your comments will be highly valuable for this forum.
All best,
Gloria
Gloria,
I read through the thread and saw that you last posted about your SoundBite in December. Any updates since then? I am hoping to get Ken interested.
Miranda
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I just ordered the Sound Bite hearing aid and expect to start using it in a few weeks. There is only one provider in Arizona and this ear doctor is in Phoenix. The upfront financial committment is $1750 and a claim will be pursued for the rest through insurance (it was explained this will involve a 3 stage long process and it is unlikely I will end up paying). I am now SSD after surgery in November 2011 (retrosigmoid). I am very motivated to regain some of my hearing ability and will post the results of this new device.
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I read through the thread and saw that you last posted about your SoundBite in December. Any updates since then? I am hoping to get Ken interested.
Miranda
Hi Miranda,
My SoundBite is working great.! Now I am entirely acustomed to it. I don't want to go out of my home without the device, even when I am at home I wear it.
In one of my previous posts I mentioned that a little plastic part from the microphone (BTE) was continuously breaking. Well... good news! I got an email from Sonitus regarding that problem, here it is:
" We have already began making new microphones with different material.
They should be ready in a few weeks and all offices will have the new
ones then."
All best,
Gloria
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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
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I had the same experience.
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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
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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
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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
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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
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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
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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.
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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
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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
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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.
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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.
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Ross, you might find this helpful http://www.anausa.org/smf/index.php?topic=10207.0
Jan
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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.
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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
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I am probably going to get either the TransEar from Johnson City, Tenn or the Cross.
I had great experience with my interactions with Dr. Schumaier. Sonitus said in an email that they wouldn't do Pre-auth for me. They had no answer for me that it is currently a Pilot Study (I hear Beta calling out to me) and no answer that in DC they are charging me about $1500 for the dentist and then $7,000 after one year when the insurance finally says no after several appeals. I did the appeals myself and was denied and then called the union and they said our particular policy does not cover anything to do with it be it hearing aid, device or prosthetic. Flat no.
They had no answer as to why Arasha and all the people on the Clinical trials are getting to use what they are expecting me to pay in the end over $8000.
TransEar helps you with the pre auth and I hear good reports. Dr. Monfared told me in an email that he won't help with the pre auth.
I went to a local audiologist in Silver Spring nearby and he said he prefers Cros to TransEar. I met someone at our Local support group two weeks ago and he just got one....very pleased. With the price you pay for Sonitus, you could buy several of these. More expensive insn't necessarily better.
Hope you don't buy anything on a Pilot Study or in Clinical Trial. As a professional retired, I used to run pilot studies and clinical trials. No patient was ever asked to pay a penny. Please learn more about this situation. I don't want you all to get burned.
Mei Mei
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Seattle WA ( Northwest) ...we have providers now. :)
Sonitus emailed these names:
Trained:
Dr. Alan Langman MD/Iris Langman (Audiologist)
Puget Sound Hearing and Balance
In Training:
Minor and James- Bellevue,WA
Claire Kilcoyne – Audiologist
Dic k Hoisted, MD
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I asked and Sonitus wrote:
"It is not in a pilot study pilot device. We have full FDA clearance. We do have long term after market studies going on to continue to add to our clinical profile, which is common for all medical devices."
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That's not what Dr. Monfared told me. It was clearly in the papers I was to sign. I also posted the link to the NIH Clinical Trials that Sonitus is on throughout the country. I'm sure they've been reading my posts and are trying to cover up.
I can repost Dr. Monfared's letter here if you like.
Mei Mei
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BAHA, CROS and TransEar are not running Clinical Trials or Pilot Studies.
The people on the Clinical Trials now going on across the country at NIH sites are getting their devices for free. How do you feel about going to a Pilot Study site and having to pay $1500 up front and another $7000 while the people on the Clinical Trials are getting theirs for free. For me, it's a no brainer, but then I'm not living on unlimited funds. I have to watch my money as I'm now retired on Disability since the surgery.
Here is what my Pilot Study doctor said:
Ashkan Monfared
7/28/11
to Christine, Shelly, me, Rachel
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
**********************
As it turns out my policy won't pay a penny of the $1500 or $7000 either. They would not pay the BAHA. When Dr. Niparko's resident told him I wasn't interested in the BAHA, he walked out of the room without saying goodbye.
Mei Mei
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My daughter is hopeful and exited to get the Soundbite.
It's a new prosthetic so the I guess we all take the risk of our individual insurances not paying.
I am in contact with Sonitus and they are seeking a designated code to file insurance claims. In the interim, Sonitus Medical plans to use a micellaneous prosthetics code (L9900) for filing claims. It would appear to me they would love to get all our insurance companies to pay for the Soundbite and are doing everything they can to make this happen.
Sonitus has provided me an information sheet to assist in the pre auth process.
In the event that a claim is ultimately denied after appeals etc... Sonitus said that they have a variety of patient assistance programs based on patient need and circumstances.
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I am new here and aslo got SSD for almost ten years in China. When i go to hospital, the doctors always say there's no way to cure but to protect your good ear.Of course, Baha now can help us in china, while it costs too much (more than 10,000 dollars) which many people can't afford it.Now i find that SoundBite could improve our hearing on the internet.So i find the forum for more information.
I have two questions below ,please help me if you can:
I hope the BTE part of the SoundBite will be smaller like the CIC hearing aid in the ear canal, which almost can't be seen by others because of i was only 25. You konw, the new CROS have made so smaller in the ear. Is the BTE part can't be smaller in the ear canal???
The second question is how does your insurance cover your hearing aid in the USA,even SoundBite? In China, the insurance don't cover the hearing aid ,so it often costs too much to have a hearing aid.Thanks for your attention.
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Hi all, I havn't posted in forever because I'm doing so well and very busy with life. :D I had surgery 2 years ago and am SSD in my right ear. The Detroit free press just printed and article in the health section of Sunday's paper 6/24/12 on the Soundbite. Anyone read it? It sounds so promising. Thanks for any input.
Susan
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I have been using the SoundBite since November 2011. It is not a perfect resolution to SSD however it greatly improves your hearing. I have been told by several people that they can see a difference when my ITM is not in my mouth. I have really found a great benefit in using it.
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Hi aericksen,
you said that Soundbite is not a perfect solution but it greatly improves your hearing.
Can you please give more detail about how Soundbite improved your hearing. Also what are the weak points of the device? Why dou you think that it is not perfect?
As I am planning to use Soundbite your experiences are very valuable for me.
Best Regards,
Koray
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We all enjoy hearing good news!
A "good" solution works for me..."perfect" is not expected.
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what's the weakness？
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ive been using the soundbite for a year now. i love it.
Im not sure what they think the weakness is....the only thing I dont like is it can squeal (like a regular hearing aid)...ive had it adjusted a few times.......im actually going back next month for another adjustment so they can turn it up more. ;)
i love the fact that i dont have a hole drilled in my head..i have a device i can remove and not a screw left in my head.
no one ever notices when im wearing it, unless it squeals. lol
i can hear the birds chirp...talk on the telephone...and use my ear like its normal. (just cant wear earbuds)
ive tried the transear, but that was too uncomfortable and didnt have a good contact with the bone.
so to me, this is the best alternative to have normal hearing again.
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Sorry I haven't posted any responses. Don't get me wrong, I love my soundbite and the quality of my hearing has greatly improved. I would have to agree the only real issue is when it decides to squeal and make a loud screech. The last time I got my sound bite adjusted they made some good adjustments, it doesn't make noises like it use too. It has been a good thing.
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Hi everyone,
I too have been out of this forum for a while, sorry! Despite the feedback that sometimes I experience with my SoundBite, I just want to say that SoundBite has greatly improved my daily life and I feel very lucky to have it.
All the best,
Gloria.
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Thank you for your update Gloria. The information you provide here is always very useful and helpful for me. Soundbite is now available in Europe, I hope in a few years it will come to Turkey, but I will not wait until that time. I talked to dealer in Europe. Price is more than I expected. I calculated that treatment will cost me more than 10,000 €. Even if this is not a low price I think that value that device will add to my life will worth it. Currently I founded my own company and not in a very stable financial position. As soon as I will be in a position to allocate this cost I will go to nearest dealer in Europe to have device.
Thank you again and Best Regards,
Koray Korkut
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just got an email from a jabramo@Sonitusmedical...
"There have been some major developments in the last couple of weeks that directly benefit the patient and the entire process of them adopting SoundBite for their hearing loss.
1. We now have a simple and accurate in-clinic demo device to allow the patient to experience bone conductive hearing via the teeth
2. We now offer every interested patient an insurance benefit investigation to determine their level of prosthetic coverage before they make any financial commitments
3. We now offer financing programs to fit nearly every need, short and long term
4. We have several new patient-centered web options
a. http://www.deafinoneear.com/
b. http://www.soundbitehearing.com (updated look and content)
c. http://www.youtube.com/user/SoundBiteHearing?feature=watch
d. Our Facebook page will be launched shortly also and we also have an additional campaign that we will be launching that follows the patient from their “First Day” with the device."
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Hi everyone,
Sorry, I haven't been posting for awhile. I just want to give you guys an update about my SoundBite usage. I was about to start a new topic, but then I realized that there is a lot of information in this thread that could be useful for new SoundBite users or people seeking for solutions for SSD issues.
It has been close to four years since I got my device. Time flies! I have no words to describe how much SoundBite has helped me. It really has improved my daily life. As long as my device is charged I don't have any issues with my SoundBite. As a matter of fact ,it's been about two years since the last time I went to the Audiologist to get adjusted my device. SoundBlite is my best friend now. I can't imagine my life without it.
All the best,
Gloria :)
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Glad to hear! :) I got the phonax cross almost 2 years ago now and my insurance paid for almost all of it. I'm sure I would love the sound bite but considering the cost of my device was almost nothing and it works good I'm going to stay with it for now. I'm sure I asked you this on this thread at one point, but can you use a phone on your deaf ear with that device? And how long on average does your battery last?
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I'm sure I asked you this on this thread at one point, but can you use a phone on your deaf ear with that device? And how long on average does your battery last?
Hi Phillies,
I am happy to hear that your phonax is working good for you :)
- YES Phillies, I can talk by phone with my bad ear while wearing the device. Sometimes, when I am at home, I actually realize that I am not wearing my SoundBite when I try to answer the phone and I can't hear at all.
- The battery of my BTE (Behind The Ear) lasts 17 hours average. The ITM (In The Mouth) lasts 8 hours average.
Take care,
Gloria
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I wanted to thank everybody who has contributed to this thread. I have been following it with great interest for several years, and really appreciate the feedback on your experiences as this looks to be a very promising solution!
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I got a SoundBite last year and yes, it does work well, but the SoundBite company said they would do all the work to do what was necessary to get it covered since I had called my insurance company and was told that I do have prosthetic coverage. Unfortunately, SoundBite has not worked to get the insurance payments. First, I had to call them many times to get them to keep going to the next step of dealing with the insurance and now they tell me that my insurance won't pay because I didn't have the right kind of prosthetic coverage, but they are the ones who told me what to ask my insurance company.
They are very nice, but are more interested in selling the device than understanding what is necessary to get it covered. If I had the correct information beforehand to ask my insurance company I might have made a different decision.
Check very carefully with your insurance before signing any papers with Sonitus/SoundBite.