Author Topic: [Sigh] ... I hate my BP100, etc.  (Read 8241 times)

Tina13

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[Sigh] ... I hate my BP100, etc.
« on: October 03, 2011, 03:02:34 pm »
I've had it for about 2-1/2 yrs now. I wore it all the time at first and was always confused how I could (as a test) block the sound from my good ear and hear from the Baha side, but when I used it normally, it seemed like my hearing was confused ... as if I were hearing things coming from two separate sources. (I'm trying to explain this appropriately & not sure that I am).

I hate the soft buttons. I still get puzzled about what the beeps are for. I go back to the instruction book, think I've got it figured out, then get confused all over again.

I took it back to the audiologist. They discovered a crack and got it fixed, then reprogrammed it for me. Still. Not liking it.

I hate how easily it can pop off and I really hate the squealing when something touches it. A family member died recently and I wore it to their memorial. I was in the reception line and every person, or every 2nd person would hug, the processor would squeal, they'd draw back, apologizing to me, me apologizing/explaining to them. It was incredibly annoying during an incredibly sad and emotional time. I wanted to heave it across the room.

Perhaps it takes some getting used to to hear correctly? To get the brain to unscramble the sounds? Is there a learning curve for this thing?

And as long as I'm complaining, I'm also very unhappy with how the site of the operation has sunken in, leaving a huge depression behind my ear and a bony protruberance where the skull was cut. I'm guessing the fat shoved in there has just reabsorbed. When I mentioned it to the doctor, he just said, "Sorry."

This Baha cost a ton of $ and even though my insurance covered most of it, it feels wrong to give up on it, yet I can't seem to get myself to experience any of the positives.

Any feedback, commiseration, our encouragement you can provide? Thanks.

CHD63

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #1 on: October 03, 2011, 04:21:56 pm »
Tina .....

So sorry you are having such a time adjusting to your BP100.

Yes, there is a brain re-learning that has to take place.  My audiologist gave me a series of exercises to do to help in retraining the brain.  If you would like them, send me a private message (PM) and I will be glad to share them with you.

She also said the more one wears the device, the sooner the brain will adapt.  I basically put mine on after my shower in the morning and wear it until I go to bed.  I have an Oticon Medical Ponto Pro and I have not experienced any of the squealing/feedback you are describing.  That would have to be incredibly frustrating.

Let me know if you would like the exercises.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Lynn Mc

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #2 on: October 06, 2011, 07:10:36 am »
I also have the BP100.  I have not had it long enough to pass judgement on it.  I agree with you on the squealing.  Mine squeals if it gets near anything!!!  Also it does pop off to easily.  As far as the hearing I am pretty happy.  I do have to keep it turned down, if it is to loud it really bothers me.  I put mine on in the AM & remove it when I get home from work.  Seems like at home I pop it off a lot!!!  I see the audiologist in January & will go from there.  Hopefully you begin to like yours better....
Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

Tina13

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #3 on: October 06, 2011, 01:10:55 pm »
Thank you, Lynn.

Clarice was kind enough to send me her exercises and I will try them. I'm surprised they were not included or discussed when I visited the audiologist.

I'm making an extra effort to wear the BAHA daily. In spite of the feature to help with noise in loud, open areas, that's where it fails me the most. We'll see.

Funny. Just the other day someone asked me why I didn't get a hearing aid (they did not know I was SSD). The conversation got off track quickly, but briefly understanding I was deaf in one ear, he said why don't you get a HA for the "good" ear. I laughed at first, but then thought ... hmmm ... let's say an individual did not want to get a BAHA ... would upping the volume in the good ear be of an help??


dalern

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #4 on: October 07, 2011, 02:04:45 am »
Tina, the problem with a HA for the good ear is that it will only amplify the background noise and not help you at all in noisy situations.  In fact, it will be worse.  Hope that helps.
Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

Tina13

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #5 on: October 07, 2011, 05:37:53 am »
Got it ... makes sense. Thanks, Dale  :)

ombrerose4

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #6 on: October 07, 2011, 05:20:01 pm »
Tina,

I used to have issues with my Baha. I felt that it was not providing me with enough help with my SSD. It took me 3 months until I found out through others on the forum that it was supposed to be personalized for me by my audiologist. But my audiologist had just handed it to me and said this button does this.... When I found out about this programming I called the Cochlear rep in NY and was disappointed when all she said was that I should look around and find another audiologist to reprogram it. I did and because these other doctors were not the original doctor who issued the baha, they wanted $500 for reprogramming. I felt and still do that Cochlear is not providing enough training to the audiologists. When I was at the symposium in Cinncinnati in June, I spoke to a neurotologist from John Hopkins and explained my disappointment with my Baha. He told me to come down to John Hopkins to see his audiologist who does hundreds of Baha's. He said she was great at reprogramming it and figuring out what each specific patient needed. I went down and met with her for almost 2 hours. She was superb. Asking me questions, doing a hearing test on me with my baha to see what I was and was not hearing and then she did some type of test that measured my bone density. Wow, I thought- that makes alot of sense. Not everyone's bones are the same- some are more porous, others more dense. When she finally made all the adjustments and repeated the hearing exam I heard everything. She told me to walk around the hospital for awhile to see how it worked in different situations. Both myself and my husband were amazed at the difference. Now I wear my Baha everyday and can't imagine being without it. She also adjusted the feedback so I very rarely get any! I will go down to John Hopkins every year for some fine tuning because she knows her stuff. I am just disappointed in Cochlear that I had to go outside of NYC to get the Baha care I needed at a more than fair cost ($50 for the entire 2 hour visit and my insurance will probably cover most of that). So please do not give up on your Baha- you just need to find an audiologist who works with them alot and knows how to address the issues you are having.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

mattsmum

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #7 on: October 08, 2011, 09:43:47 am »
regarding amplifying the good ear - i recently saw something for just this on the phonak website. it amplifies speech in the good ear and was specifically designed for ssd. i have no personal experience (have some hearing in AN ear and use hearing aid), but it may be worth exploring that option?
vikki
LINAC radiosurgery july 2011 for 1.5cm tumour (uk)

Lynn Mc

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #8 on: October 12, 2011, 08:37:42 am »
Wow ombrerose!!  I did not realize that everyones BAHA was not programmed for them!!!  I spent a lot of time with my audiologist to get it right.  As I said I do have some feedback but will get it tweaked in January.  Maybe that is some of Tina's problem.  I wore mine this past weekend in a REALLY noisy event.  Lots of people talking & dogs barking.  I think I probably heard tooo much but it was wonderful to hear the people talking to me.
Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

leapyrtwins

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #9 on: October 19, 2011, 02:18:52 pm »
I've had my BAHA (started with a Divino) for almost 4 years now and have been wearing the BP100 for 1 1/2+ years and absolutely love it.

I'm puzzled about your comment about how easily it pops off  ???  This doesn't happen to me at all. 

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

tenai98

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #10 on: October 20, 2011, 06:12:23 am »
I'm not liking mine either..been in shop for feedback several times and just saw audio yesterday...order the new ponto pro power...while I had the demo ponto, I had no feedback whatsoever..now when I had the new BP110, there was feedback issues as well....my audio said the cochlear claims it has the feedback issue solved...well not with mine....cant wait for my ponto to arrive...
Joann
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

james e

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #11 on: October 20, 2011, 12:36:55 pm »
I have had two BAHA cases crack, and the crack was causing the feedback. I have the NEW case, and it has not cracked, and I do not have any feedback. You might look at your case for a small crack. When you take off the external battery cover you will see two tiny screws. Both of my BAHA cracks radiated out the screw holes across the side of the case. If yours is cracked, call Cochlear, and they can help you.

How are you going to plug a ponto into a BAHA abutment?

ombrerose4

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #12 on: October 22, 2011, 08:36:25 am »
I have just had my second Baha crack. Waiting for a loaner from my terrific audiologist at John Hopkins and then she will send to Cochlear for repair. Just when I was loving it:(
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

tenai98

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #13 on: October 22, 2011, 03:35:38 pm »
sure enough my newly fixed (new case) is cracked at the screw seam...grrrrr.....oh well waiting for the ponto but will get this fixed as still under warranty as a back up unit
Jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

keithk

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Re: [Sigh] ... I hate my BP100, etc.
« Reply #14 on: October 23, 2011, 03:10:57 pm »
My BAHA has been returned 3 times for a cracked case and missing or loose plastic disk. t
Tomorrow I will call for the 4th time to have the plastic disc replaced. I have lost all confidence. in the BP100.
AN surgery 8/19/10, 9.5 hrs
8mm x 5mm left side
Retrosigmoid, Drs Reichert & Harvey
Severe hearing loss in the left ear before surgery. SSD after surgery. Balance issues. Tinnitus (mild). Buzzing in left ear.
BAHA implant surgery 11/17/10
BAHA activation 2/1/11