Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 195097 times)

Denise S

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #300 on: November 06, 2011, 09:39:47 pm »
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. 
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Ross

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #301 on: November 07, 2011, 11:06:55 am »
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.
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #302 on: November 07, 2011, 07:16:34 pm »
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.

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #303 on: November 07, 2011, 09:34:06 pm »
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
Left side AN 2.5x1.8 removed on 10/17/2007 endosc. by Dr.Shahinian (retrosig) at SBI, LA,Ca. Facial phalsys (almost back). Balance issues. Tinnitus. MRI 8 months later showed AN was resected completelly.TransEar 11/2008. Clinical trial for SoundBite 11/2009. SoundBite user.I have the best family.

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #304 on: November 08, 2011, 07:33:00 am »
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?
« Last Edit: November 08, 2011, 08:27:52 am by Phillies »

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #305 on: November 08, 2011, 06:57:44 pm »
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.




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
« Last Edit: November 08, 2011, 07:01:19 pm by Arasha »
Left side AN 2.5x1.8 removed on 10/17/2007 endosc. by Dr.Shahinian (retrosig) at SBI, LA,Ca. Facial phalsys (almost back). Balance issues. Tinnitus. MRI 8 months later showed AN was resected completelly.TransEar 11/2008. Clinical trial for SoundBite 11/2009. SoundBite user.I have the best family.

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #306 on: November 08, 2011, 07:22:07 pm »
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.   :'(

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #307 on: November 09, 2011, 07:29:32 pm »
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?

hruss

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #308 on: November 10, 2011, 09:23:29 pm »
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
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #309 on: November 12, 2011, 05:37:11 pm »
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 

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Ross

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #310 on: November 15, 2011, 04:39:50 pm »
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.
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

Phillies

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #311 on: November 16, 2011, 08:33:11 am »
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   :-\

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #312 on: November 19, 2011, 05:18:49 pm »
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
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

m4guzman

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #313 on: December 08, 2011, 05:36:44 pm »
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
1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #314 on: December 09, 2011, 11:44:50 am »
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
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

 


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