Author Topic: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!  (Read 193396 times)

lori67

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #15 on: October 16, 2009, 05:52:11 pm »
Good point, Greg... I don't think I need to hear myself chew!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #16 on: October 16, 2009, 10:58:13 pm »
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
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

JerseyGirl2

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #17 on: October 17, 2009, 06:22:25 am »

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)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Kaybo

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #18 on: October 17, 2009, 09:40:19 am »
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
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Jim Scott

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #19 on: October 17, 2009, 01:10:59 pm »
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
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. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

JerseyGirl2

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #20 on: October 17, 2009, 01:31:07 pm »
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)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Kaybo

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #21 on: October 17, 2009, 08:11:39 pm »
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
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #22 on: October 18, 2009, 10:14:13 pm »
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
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

wendysig

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #23 on: October 19, 2009, 01:26:40 pm »
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
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Kaybo

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #24 on: October 19, 2009, 03:26:01 pm »
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
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Arasha

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #25 on: October 20, 2009, 09:36:52 pm »
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

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.

wendysig

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #26 on: October 20, 2009, 10:57:25 pm »
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
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

leapyrtwins

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #27 on: October 20, 2009, 11:13:22 pm »
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
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

lori67

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #28 on: October 21, 2009, 06:43:39 am »
That's great, Gloria!

Can't wait for the report on how it works!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

GRACE1

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Re: GOOD NEWS...NEW INVENTION FOR SSD... Sounds good for us!!!!
« Reply #29 on: October 21, 2009, 07:24:41 am »
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
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16