GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!

[Mei Mei]

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

[Mei Mei]

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

[Mei Mei]

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

[leapyrtwins]

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

[Paul F]

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.

[leapyrtwins]

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

[Denise S]

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

[leapyrtwins]

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

[Arasha]

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

[raj_06]

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

[Mei Mei]

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

[mom of AN pt.]

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.

[heyct]

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

[Brookes]

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.

[leapyrtwins]

Brookes -

there are numerous posts about the BAHA on the Forum, as you say.  Lots of them were created by me   

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