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#1 (permalink) |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Went for my second appt. with them. Had my CT disc, and they did an ABR test. Or tried. They said they couldn't get a response. Said there was too much noise in my head for the machine to measure the results. Took half a Xanex to make me calmer, still couldn't get any results. Audi gave up at that point, even though I offered to take more Xanex. She actually had the nerve to ask me if I even took the first half! Even though she WATCHED me take it! She brought me the water! This is the same lady who got frustrated with me last time during the speech discrimination test, telling me she KNOWS I can hear the words, so I need to respond?! Yeah lady, I can HEAR it, DOES NOT mean I can UNDERSTAND it!! Ugh, done with her. Go back to see Dr. and he says, well we need to try again with you taking a whole Xanex 2 hours before the test? Um, ok. How are you going to get any better results, when as it was I almost fell asleep three times during the test? That's about as good as it gets for relaxed! My Mom and I are no annoyed, especially because my Audi here at home (House Ear is 2 1/2 hours away from us) doesn't even understand why he is doing the ABR, because I'm not 2 years old (her words). He REFUSES to do ANYTHING (aid my left ear, try a BAHA on a softband, etc) until he can get ABR results. SO annoying! On the drive home, my Mom and I decided were not going back to the ABR appt they scheduled for the end of the month. I have an appt with my Audi on Friday, and were going to talk to her about this. See if she can recommend a different Dr. and clinic.
Anyway, thanks for letting me vent!
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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#2 (permalink) |
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Registered User
Join Date: May 2012
Location: Myrtle Beach, SC
Posts: 1,701
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That's awful!! Seriously, someone who work with people with hearing loss really should understand the difference between hearing and understanding! I also always wonder why they don't have any other way to contact them except for the telephone. Why don't they have email, or a website where you can leave them messages, ask questions etc?? You deal with people who can't hear, or hear very well, wtf??
Noises in your head. I have to google ABR to find out what this is!! Sorry mazie
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People take different roads seeking fulfillment and happiness. Just because they're not on your road doesn't mean they've gotten lost.~Dalai Lama |
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#4 (permalink) |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Yes, I have an ENT here in town, but he doesn't do BAHA's or CI's. Only two docs here in town do, and both my ENT and Audi advised against them, as they are very new. They both recommended going to LA or Santa Barbara for this. Both had good things to say about House Ear Clinic. Guess its just not a good fit for me or my loss.
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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#5 (permalink) | |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Quote:
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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#7 (permalink) |
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Registered User
Join Date: May 2012
Location: Myrtle Beach, SC
Posts: 1,701
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From what I just read about it the ABR tests are done on adults if there's hearing loss in only one ear, or more severe loss in one ear than the other. I guess this happens sometimes one something's up with the nerve? They probably want to do the test because if there IS something wrong with your auditory nerve a CI won't work. At least I wouldn't think so since a CI bypasses your ear's hearing mechanisms and puts the sound via electrodes straight to the nerve.
My question is....do they already know what caused your hearing loss in the first place? Because if they do, and it doesn't involve the auditory nerve, testing for it seems silly.
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People take different roads seeking fulfillment and happiness. Just because they're not on your road doesn't mean they've gotten lost.~Dalai Lama |
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#8 (permalink) | |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Quote:
These are my options right now: 1. Get another UP hearing aid for left ear and postpone seeking an implant. 2. Get a BiCROS aid for left ear and postpone seeking implant. 3. Continue pursuing implant in the present. Going to ask Audi's opinion tomorrow. I've never had a regular aid in my left ear, so I'm curious to see if it would help me locate sounds (ie have directional hearing). Not expecting to hear/understand speech with it.
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
Last edited by AMazieLN; 08-09-2012 at 06:46 PM. Reason: Typo |
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#9 (permalink) |
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Siberian Husky
![]() Join Date: Jun 2006
Location: Canada
Posts: 14,643
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that is sound serious big pretty day ! did you replace new doctor? or new audiologist?
he or we refused say? search find on better how doctor?
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Last edited by Smithtr; 08-10-2012 at 12:13 AM. |
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#10 (permalink) |
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Registered User
Join Date: May 2006
Location: Canada
Posts: 3,951
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that is bull...and ABR isn't influenced by sounds in your head..and if it was it wouldn't be significant enough to not give results...excessive moving and external noise can be a problem but not internal noise..they aren't experienced with ABR's if they are telling you that..
And I get the SAME thing from my CI audi..make sure if you hear it you tell me the word or press the button that you can hear it...b*tch hearing and understanding are two diff things! arghhhh |
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#11 (permalink) | |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Quote:
Bad Audi was from the House Ear Clinic Will look into different surgeons if we decide to pursue an implant in the short term
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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#12 (permalink) | |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Quote:
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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#13 (permalink) | |
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Registered User
Join Date: Jun 2012
Location: Washington state, US
Posts: 62
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Regardless, the whole thing sounds horribly frustrating! They need to treat you better! |
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#15 (permalink) | |
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Joe's Friend
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#16 (permalink) | ||
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Registered User
Join Date: Jun 2005
Location: Canada
Posts: 2,087
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Wirelessly posted (Blackberry Bold )
Quote:
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Hoh/Deaf ~ +120db deaf right , mild/mod flux left & APD English & ASL ...PAH!! ![]() Ignorance is NOT Bliss |
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#17 (permalink) | |
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Registered User
Join Date: May 2010
Posts: 3,353
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Quote:
Edit: We still use this ENT.
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Severe-to-profound hearing loss in both ears. SD @ 100db L-88% / R-96% - unaided Phonak Naida IX UPs |
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#18 (permalink) | |
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Siberian Husky
![]() Join Date: Jun 2006
Location: Canada
Posts: 14,643
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Quote:
Glad of hear news
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#19 (permalink) |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Saw Audi, who is convinced House Ear thinks I'm faking. She says that's completely ridiculous. She said she attempted to "make me jump" during the test(in June) by suddenly putting out 110dB, and said I didn't even flinch, so she knows I'm not faking. She gave us a recommendation 5 hours away. I'm letting my Mom decide on where we go, it's her and my Dad's money.
Audi ordered me an FM system to trial for school. I was really worried I wouldn't be able to function. So this is very good. Will get it from her 3 days before school starts Excited for it!!Oh, and returned my ComPilot. It was super sketchy with its signal, so I was only using it as a remote. Oh well! If I decide later I want the iCom I'll get that back, had no problems with it!
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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#20 (permalink) |
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Registered User
Join Date: Mar 2012
Location: Scotland
Posts: 1,368
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Seems silly that they think you would waste time and money to fake it. Doesn't make sense.
Here in UK. People faking hearingloss for compensation is huge business. They do a simply test where they ask people what are the saying, pat, mat, bat. They all have the same lip movements. Hope you get things sorted.
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#21 (permalink) |
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Registered User
Join Date: Jun 2005
Posts: 40
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First, love your ear-bling. I spent years trying to get patients to go a little nuts with their hearing aids because why would you be as frumpy as possible with something that costs that much and is on your ear every day?
ABR can measure brainwave from the cochlea through the brain. ABR isn't very precise, but it is/should be pretty darn objective; if you have hearing, there's a brainwave. Yes, this technique IS sometimes used to figure out if a person is faking or exaggerating (and yes, people do this, for a variety of reasons, as crazy as that may sound). However, I imagine the motivation was mostly to figure out what the heck the hearing loss is on the left. Is there any bone conduction info for the left? If the loss is sensorineural, a BAHA wouldn't help the left. Also, given that you've had a skull fracture, they may be concerned that there is neurological involvement which would make a cochlear implant not the best option. Willknit is correct in saying that "noise" refers not to an audible sound, but to electrical activity. It makes it very hard to get useful results. If you could actually fall asleep, that would be ideal, but some people are still pretty active. Of course, it probably doesn't help that your experience has been so negative; makes it hard to feel relaxed! I'm inclined to think new AuD's are a bit more able to relate to younger people, more up-to-date on the research (and not just their own research), etc. On the other hand, if someone is going to drill a hole in your head, you want them to know their way around a cochlea! Hopefully you can find someone who can help you. Good luck! |
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#22 (permalink) | ||
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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Quote:
Quote:
I don't believe there are any bone conduction results for the left ear, I don't think it's ever been tested. I think they're just assuming the loss in the left ear would yield similar results (as far as conductive vs. sensorial), since the trauma was experienced in the same day. The only difference between the two in treatment is that the reconstructive surgery didn't work on the left. I know I can hear via bone conduction on the left, as when they use the tuning fork on that side on my mastoid bone, I can hear it. Yeah, my Mom is dead-set against not using the new docs here in town. She's very much a "use the best we have access to". I've talked her into looking at docs closer than Stanford (the 5hrs away that my Audi recommended). Were going to do some research and calling around, compile a list, and see if my Audi can recommend anyone on that list when we pick up my FM system next Friday. Oh, and I do know people fake it or exxaggerate it, but it's just sad that they would think I'm faking, when I have been deaf for SIXTEEN years. Pretty sure I would have been caught by now! Lol! My pediatric records should be enough to de-bunk any doubts, I had surgery to restore my hearing for goodness sake! House Ear didn't have these records, but they did know of the surgeries and injury.
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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#23 (permalink) |
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Registered User
Join Date: Jun 2005
Posts: 40
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Actually, I'm guessing House Ear doesn't think you're faking it (although that audiologist sounds....not good). But your own audiologist might be interpreting their testing that way.
Personally, my experience with ears is that they're extraordinarily complex, we have no absolute understanding of every little detail of what's going on inside, and the more data we can accumulate, the closer we get towards taking the right steps...which you really, REALLY want if someone might be drilling a hole in your head. So I tend to be pro-testing. But that's me. |
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#24 (permalink) |
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Registered User
Join Date: Jun 2012
Location: California
Posts: 89
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I understand the need for testing, but ignoring results that are right in your face? Annoying.
Have an appt next month at University of California at Irvine
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Mazie, 24yrs Phonak Naida S V UP with full shell mold Learning ASL and how to live Deaf with a capital D. ![]() ![]() ![]() ![]()
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