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Author Topic: No sound bite for me  (Read 2815 times)

tweety

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No sound bite for me
« on: July 17, 2011, 11:10:00 pm »
I went to Pittsburgh to see if I qualified for the sound bite only to be disappointed as I have a small amount of useless hearing in my right ear and they will not allow pt to be in the trial unless SSD.  I wanted to try until I actually saw the device.  It looked a little uncomfortable and the battery life didnt seem to be long.  THe audiologist talked me into trying the Cross Aid????  I guess that is what it is called.  I am picking it up on Tuesday and can try it for one month to see if I like it.  These insurance companies have no sympathy for anyone with a hearing loss.  Since I am not deaf in my ear, they will even give me grief if I want to pursue the BAHA.  the audiologist said she has been having a lot of success with the cross aid so I am willing to try.  The cost is $4400 and my insurance will pick up $1000.  If I dont like it, I  will have to pay $150.00 and they will return the rest of my money. I am getting it so I have them on vacation where I am surrounded by noise at restaurants etc.  Will let you know how I hear with these new things.  Tweety
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leapyrtwins

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Re: No sound bite for me
« Reply #1 on: July 18, 2011, 05:53:10 am »
Tweety -

sorry to hear you can't be part of the Sound Byte trial.  Interesting to hear your comment about it looking uncomfortable - something I've imagined from the start when folks first started talking about it. 

I hope the Cros works for you, but if you are serious about pursuing a BAHA don't let a little amount of hearing in your right ear stop you.  BAHA candidates don't have to be completely SSD and Cochlear will work with your insurance company on getting you coverage if that's something you'd like them to do.

Please keep us posted on how you like the Cros,

Jan
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Jim Scott

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Re: No sound bite for me
« Reply #2 on: July 18, 2011, 01:01:20 pm »
Hi, Nancy ~

I'm sorry the Sound Byteâ„¢ didn't work out for you but, as Jan posted, it seems as if it would be rather uncomfortable.  We'll see.  Meanwhile, good luck with the CROS aid.

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

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Mei Mei

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Re: No sound bite for me
« Reply #3 on: July 26, 2011, 06:52:37 pm »
I had my appointment today with Dr. Monfared at GW and then went to meet with the audiologist and she tried it on me.   It wasn't uncomfortable for me at all and I asked if I could try my iPod ear bud and I had it in with no problem at all.    The only problem or caveat is that it doesn't achieve stereo sound which I can get with my single ear bud made for SSD people.   I was very pleased with the visit.   I just didn't know this was a trial and had thought they were done with the trial after the FDA approved it.   All the patients in the trial will be meeting each other and be given the SoundBite at the same time, so we can all turn on together...party time!
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
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Mei Mei

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Re: No sound bite for me
« Reply #4 on: July 26, 2011, 07:40:07 pm »
Tweety,
If you have as you say "useless" hearing then you should be counted in as an SSD.   Why don't you sent an email to Dr. Monfared at GW and discuss your dilemma.  I have residual hearing but no word recognition.   Do you have word recognition?
That is the bottom line for SSD.
Contact me on a PM and I will send you the contact information.
Sincerely,
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

tweety

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Re: No sound bite for me
« Reply #5 on: August 08, 2011, 09:10:24 pm »
Mei Mei,  I have no word recognition in my right ear.  i am trying the cros aid . It helps some but the tinnuitis drives me crazy at times  Nancy
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Mei Mei

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Re: No sound bite for me
« Reply #6 on: August 09, 2011, 09:31:55 am »
I'm sorry to hear this.   I also have no word recognition but qualified for it.
Have you tried TransEar?
Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh
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