Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 196485 times)

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #315 on: December 22, 2011, 02:23:10 am »
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
« Last Edit: December 22, 2011, 02:27:16 am 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.

m4guzman

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #316 on: December 22, 2011, 08:29:57 am »
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
1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

KKorkut

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #317 on: December 23, 2011, 04:39:02 am »
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 

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #318 on: December 23, 2011, 05:57:32 pm »
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

« Last Edit: December 23, 2011, 06:03:22 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.

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #319 on: December 23, 2011, 06:17:39 pm »
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
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 #320 on: December 26, 2011, 09:25:34 am »
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.

m4guzman

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #321 on: December 27, 2011, 09:40:47 am »
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
1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

Ross

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #322 on: January 19, 2012, 08:23:25 pm »
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
AN, 9 MM
Radiation Treatment, February 2009
Hearing loss in right ear, July 2009

mom of AN pt.

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #323 on: January 31, 2012, 04:47:19 pm »
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.


GOIN2LA

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #324 on: February 05, 2012, 07:00:57 pm »
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!
Diagnosed October 20,2006
5cm AN Whopper Sticky like Glue
Tumors Name - Ted
Surgery date November 20, 2006
Skull Base Institute
Dr Shahinian
Scripture - Philippians 4:6-9

mandy721

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #325 on: February 05, 2012, 08:04:52 pm »
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?
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #326 on: February 05, 2012, 10:12:58 pm »
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

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.

mandy721

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #327 on: February 07, 2012, 09:06:44 am »
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
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

syman

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #328 on: February 10, 2012, 11:52:49 am »
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.

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #329 on: February 13, 2012, 05:16:54 pm »

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





 
« Last Edit: February 13, 2012, 05:27:22 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.

 


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