Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 michelle i can relate to aubrie when she says i can hear m;y self echo i have the same hearing aid LOL hugs ellen > > - > > I think the discrepancy between hearing in the booth and hearing in real > life is that the booth is isolated with no environmental noise, no > competing > visual input, etc. I don't think it's anything more than the realities of > aided hearing v. natural hearing and booth v. real environments. > > The BAHA is bone anchored hearing aide. So the sound goes directly to the > mastoid bone thru a screw implanted into it. The sound then goes directly > to the nerve without having to get through any inner ear conductive > components. So you hear the same whether you have fluid, ear infection, > whatever. The aide we're borrowing is a bone conduction aide that is held > on with an elastic headband. As you can imagine, there is slipping of the > aide that significantly affects the sound quality. I think in the past, > before BAHA, a bone conduction aide was a last resort for people who > couldn't use air conduction aids due to anatomy or the nature of their > hearing loss. But it was not reliable - sweat, movement, etc would impact > the quality of sound. But now that we can anchor the thing right to a > person's head, all that movement and interference is removed and the sound > is perfectly conducted through the bone. (Anyone clarify if I've got any > misperceptions here!) > > > Michele W > Aubrie's mom > > _____ > > From: CHARGE <CHARGE%40yahoogroups.com> [mailto: > CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of > mdlinda@... <mdlinda%40aol.com> > Sent: Saturday, August 19, 2006 8:05 AM > To: CHARGE <CHARGE%40yahoogroups.com> > > Subject: Re: BAHA for Aubrie? > > The discrepency between hearing capability in the booth, compared to in > the > world, says that its an impulse carrying nerve problem? Or a nerve > receiving > > problem? Or a sound discrimination problem, or an interpretation problem? > And the BAHA gets the sound signal in through a different route? Is that > basically it? You don't have to answer that, unless you have time to kill. > Its > not important that I 'get it'. I can always look it up. > Anyway, it sounds to me like you have a good plan. ;-) > in Ma. ( 21 yrs) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 You've got it Michele...I'll post some pictures later today on KK's new website of what the thing looks like post op (it's gross!) and then when it's all healed, etc. and then send the link. Lis > > - > > I think the discrepancy between hearing in the booth and hearing in real > life is that the booth is isolated with no environmental noise, no > competing > visual input, etc. I don't think it's anything more than the realities of > aided hearing v. natural hearing and booth v. real environments. > > The BAHA is bone anchored hearing aide. So the sound goes directly to the > mastoid bone thru a screw implanted into it. The sound then goes directly > to the nerve without having to get through any inner ear conductive > components. So you hear the same whether you have fluid, ear infection, > whatever. The aide we're borrowing is a bone conduction aide that is held > on with an elastic headband. As you can imagine, there is slipping of the > aide that significantly affects the sound quality. I think in the past, > before BAHA, a bone conduction aide was a last resort for people who > couldn't use air conduction aids due to anatomy or the nature of their > hearing loss. But it was not reliable - sweat, movement, etc would impact > the quality of sound. But now that we can anchor the thing right to a > person's head, all that movement and interference is removed and the sound > is perfectly conducted through the bone. (Anyone clarify if I've got any > misperceptions here!) > > Michele W > Aubrie's mom > > _____ > > From: CHARGE <CHARGE%40yahoogroups.com> [mailto: > CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of > mdlinda@... <mdlinda%40aol.com> > Sent: Saturday, August 19, 2006 8:05 AM > To: CHARGE <CHARGE%40yahoogroups.com> > Subject: Re: BAHA for Aubrie? > > The discrepency between hearing capability in the booth, compared to in > the > world, says that its an impulse carrying nerve problem? Or a nerve > receiving > > problem? Or a sound discrimination problem, or an interpretation problem? > And the BAHA gets the sound signal in through a different route? Is that > basically it? You don't have to answer that, unless you have time to kill. > Its > not important that I 'get it'. I can always look it up. > Anyway, it sounds to me like you have a good plan. ;-) > in Ma. ( 21 yrs) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 - That's be helpful. Thanks! Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Weir Sent: Sunday, August 20, 2006 6:06 AM To: CHARGE Subject: Re: BAHA for Aubrie? You've got it Michele...I'll post some pictures later today on KK's new website of what the thing looks like post op (it's gross!) and then when it's all healed, etc. and then send the link. Lis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Michele, Well I am glad you got a 2nd opinion. We have to see a ENT in Illinois for DSCC to pay for Eva's hearing aid and I asked about different types of hearing aids and such for Eva and they think she has more then enough hearing to just use the hearing aid she has. But I will be asking the new ENT because the ENT at Childerns asked me if anyone has talked to me about an inplant so I will be asking again. I hope it all happens soon for Aubrie so you don't have to pay out of pocket. Good luck to you both!! Crystal mom to (10), (3), and Eva (16 month CHARGEr) wife to Dan > > I just need to talk this through with you guys. Those who have been on the > list for a while know that I've been considering a bone anchored hearing > aide for Aubrie for a few years now. I think it first occurred to me > through discussions here, and then seeing her reaction with the bone > conduction aide on in the hearing booth. On her audiograms, the difference > between her hearing levels with bc or air are not huge. But the reaction on > her face with the bc aid is notable. It's always bothered me that in the > booth they ask simply " do you hear it " rather than trying to determine how > well you hear it. > > > > Anyway, I've asking questions and investigating this possibility for quite > some time. Last year, we transferred to a new audiologist 3 hours away > because they are the best in CI's and BAHA's in IL. We went specifically to > discuss the BAHA. At that time, they didn't think she was a good candidate. > But they did note the fluctuation in her hearing. In the past, no one had > acknowledged that her hearing truly fluctuates throughout the year. That is > another reason I've thought a BAHA would be good - regardless of fluid or > whatever goes on with her sinuses, etc, she'd still have stable hearing. > > > > As I see it, even a small improvement in hearing is important to Aubrie. If > she just had a hearing loss, perhaps a small improvement wouldn't make as > much difference. But with all the other stuff going on, it's critical that > we maximize everything as much as possible. > > > > So finally this spring we again reviewed her situation and this time they > agreed that a BAHA might make sense. We've been waiting for months for the > loaner BC aide to get through some maintenance issues so we could borrow it. > Last Saturday, Aubrie's glasses broke at cheerleading camp. Without her > glasses to hold them, her hearing aids won't stay on. Then, on Monday, one > of her hearing aides broke -after we finally got a pair of very lightly > tinted sunglasses to hold them on. So then we were getting really anxious > for the BC loaner to arrive. > > > > It came this afternoon. As soon as I put it on, she was so thrilled! She > was talking and singing and playing with her voice just to hear herself. > She said she prefers the sound of the BC than the sound of her regular > aides. But then came the obstacle. She rocks - I mean vigorously > sometimes. We went to a concert and she was rocking away to the music, and > the aide slipped and made her crazy with whatever sound it was making. So > now she doesn't want to wear it cuz she can't control herself and stop the > rocking. She really tried for a while at the concert. I have told her that > I think it will be ok with slow gentle rocking - hopefully just the vigorous > music rocking was the problem. > > > > To complicate things, our financial support for medical stuff will end in > April when our income is over the limit. So if we want to do the BAHA, we > need to do it before then or else we'll have to pay the out-of- pocket > expenses. Even if insurance pays a portion - you know our part will be > huge. So it's very motivating to just go ahead and do it. I hate to jump > into something like that without trying the loaner for a reasonable time > period. But I also am pretty darn sure it's the right thing to do. So why > delay giving her good hearing? And why miss out on the financial support > while we wait and see? > > > > You know that " follow your gut " thing? My gut's been saying this is the > right thing for years. I finally have everything in place to go for it. > But what if the surgery is difficult? What if it doesn't work so well once > we do it? But, gosh, if we wait even a bit, it'll be another entire school > year of fluctuating hearing. As I'm talking this through, I'm thinking we > should move forward with the plan for a BAHA, where the loaner while we wait > for appts and go through the process, and by the time the surgery date gets > here we'll be certain. > > > > Thoughts?? > > > > Oh-and also - we go to new student orientation at ISD on Sunday and her > first day of school is Monday!!!!!! > > > > Michele W > > Aubrie's mom 8 yrs -- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 In a message dated 8/20/2006 12:57:13 PM Eastern Standard Time, supermama95@... writes: My gut's been saying this is the > right thing for years. I " d trust your instincts for Aubrie. I feel you and her Dad are integral parts of her healthcare and know what is best for her. I know expense is an issue as is the doubt of the effectiveness of the surgery. But, you've expressed that the other aide she has now may not be as effective as you'd like for her. Chrystal Arleigh (3) and Chrystine Hope (10 months CHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Crystal- I would say ask them to test her with air conduction and bone conduction in the booth. Besides the response they record, you watch her face. That's where I saw the difference with Aubrie. The first time they put the BC aide on her, her face lit up like " wow " . Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of supermama95 Sent: Sunday, August 20, 2006 11:53 AM To: CHARGE Subject: Re: BAHA for Aubrie? Michele, Well I am glad you got a 2nd opinion. We have to see a ENT in Illinois for DSCC to pay for Eva's hearing aid and I asked about different types of hearing aids and such for Eva and they think she has more then enough hearing to just use the hearing aid she has. But I will be asking the new ENT because the ENT at Childerns asked me if anyone has talked to me about an inplant so I will be asking again. I hope it all happens soon for Aubrie so you don't have to pay out of pocket. Good luck to you both!! Crystal mom to (10), (3), and Eva (16 month CHARGEr) wife to Dan > > I just need to talk this through with you guys. Those who have been on the > list for a while know that I've been considering a bone anchored hearing > aide for Aubrie for a few years now. I think it first occurred to me > through discussions here, and then seeing her reaction with the bone > conduction aide on in the hearing booth. On her audiograms, the difference > between her hearing levels with bc or air are not huge. But the reaction on > her face with the bc aid is notable. It's always bothered me that in the > booth they ask simply " do you hear it " rather than trying to determine how > well you hear it. > > > > Anyway, I've asking questions and investigating this possibility for quite > some time. Last year, we transferred to a new audiologist 3 hours away > because they are the best in CI's and BAHA's in IL. We went specifically to > discuss the BAHA. At that time, they didn't think she was a good candidate. > But they did note the fluctuation in her hearing. In the past, no one had > acknowledged that her hearing truly fluctuates throughout the year. That is > another reason I've thought a BAHA would be good - regardless of fluid or > whatever goes on with her sinuses, etc, she'd still have stable hearing. > > > > As I see it, even a small improvement in hearing is important to Aubrie. If > she just had a hearing loss, perhaps a small improvement wouldn't make as > much difference. But with all the other stuff going on, it's critical that > we maximize everything as much as possible. > > > > So finally this spring we again reviewed her situation and this time they > agreed that a BAHA might make sense. We've been waiting for months for the > loaner BC aide to get through some maintenance issues so we could borrow it. > Last Saturday, Aubrie's glasses broke at cheerleading camp. Without her > glasses to hold them, her hearing aids won't stay on. Then, on Monday, one > of her hearing aides broke -after we finally got a pair of very lightly > tinted sunglasses to hold them on. So then we were getting really anxious > for the BC loaner to arrive. > > > > It came this afternoon. As soon as I put it on, she was so thrilled! She > was talking and singing and playing with her voice just to hear herself. > She said she prefers the sound of the BC than the sound of her regular > aides. But then came the obstacle. She rocks - I mean vigorously > sometimes. We went to a concert and she was rocking away to the music, and > the aide slipped and made her crazy with whatever sound it was making. So > now she doesn't want to wear it cuz she can't control herself and stop the > rocking. She really tried for a while at the concert. I have told her that > I think it will be ok with slow gentle rocking - hopefully just the vigorous > music rocking was the problem. > > > > To complicate things, our financial support for medical stuff will end in > April when our income is over the limit. So if we want to do the BAHA, we > need to do it before then or else we'll have to pay the out-of- pocket > expenses. Even if insurance pays a portion - you know our part will be > huge. So it's very motivating to just go ahead and do it. I hate to jump > into something like that without trying the loaner for a reasonable time > period. But I also am pretty darn sure it's the right thing to do. So why > delay giving her good hearing? And why miss out on the financial support > while we wait and see? > > > > You know that " follow your gut " thing? My gut's been saying this is the > right thing for years. I finally have everything in place to go for it. > But what if the surgery is difficult? What if it doesn't work so well once > we do it? But, gosh, if we wait even a bit, it'll be another entire school > year of fluctuating hearing. As I'm talking this through, I'm thinking we > should move forward with the plan for a BAHA, where the loaner while we wait > for appts and go through the process, and by the time the surgery date gets > here we'll be certain. > > > > Thoughts?? > > > > Oh-and also - we go to new student orientation at ISD on Sunday and her > first day of school is Monday!!!!!! > > > > Michele W > > Aubrie's mom 8 yrs -- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Chrystal- You're right. If it weren't for our instincts and our watchfulness for appropriate ideas, Aubrie wouldn't have many of the supports she now has. Much of that is due to the information we get here on the list. I'm still feeling pretty certain we'll move forward towards surgery. Thanks for the supportive comments. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of CJCRITES@... Sent: Sunday, August 20, 2006 4:13 PM To: CHARGE Subject: Re: Re: BAHA for Aubrie? In a message dated 8/20/2006 12:57:13 PM Eastern Standard Time, supermama95@ <mailto:supermama95%40yahoo.com> yahoo.com writes: My gut's been saying this is the > right thing for years. I " d trust your instincts for Aubrie. I feel you and her Dad are integral parts of her healthcare and know what is best for her. I know expense is an issue as is the doubt of the effectiveness of the surgery. But, you've expressed that the other aide she has now may not be as effective as you'd like for her. Chrystal Arleigh (3) and Chrystine Hope (10 months CHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Michele, Sounds like she really benefits and with the BAHA the rocking won't matter the same way that it does with the band. Kim > > > > > > > I just need to talk this through with you guys. Those who have been on the > list for a while know that I've been considering a bone anchored hearing > aide for Aubrie for a few years now. I think it first occurred to me > through discussions here, and then seeing her reaction with the bone > conduction aide on in the hearing booth. On her audiograms, the difference > between her hearing levels with bc or air are not huge. But the reaction on > her face with the bc aid is notable. It's always bothered me that in the > booth they ask simply " do you hear it " rather than trying to determine how > well you hear it. > > Anyway, I've asking questions and investigating this possibility for quite > some time. Last year, we transferred to a new audiologist 3 hours away > because they are the best in CI's and BAHA's in IL. We went specifically to > discuss the BAHA. At that time, they didn't think she was a good candidate. > But they did note the fluctuation in her hearing. In the past, no one had > acknowledged that her hearing truly fluctuates throughout the year. That is > another reason I've thought a BAHA would be good - regardless of fluid or > whatever goes on with her sinuses, etc, she'd still have stable hearing. > > As I see it, even a small improvement in hearing is important to Aubrie. If > she just had a hearing loss, perhaps a small improvement wouldn't make as > much difference. But with all the other stuff going on, it's critical that > we maximize everything as much as possible. > > So finally this spring we again reviewed her situation and this time they > agreed that a BAHA might make sense. We've been waiting for months for the > loaner BC aide to get through some maintenance issues so we could borrow > it. > Last Saturday, Aubrie's glasses broke at cheerleading camp. Without her > glasses to hold them, her hearing aids won't stay on. Then, on Monday, one > of her hearing aides broke -after we finally got a pair of very lightly > tinted sunglasses to hold them on. So then we were getting really anxious > for the BC loaner to arrive. > > It came this afternoon. As soon as I put it on, she was so thrilled! She > was talking and singing and playing with her voice just to hear herself. > She said she prefers the sound of the BC than the sound of her regular > aides. But then came the obstacle. She rocks - I mean vigorously > sometimes. We went to a concert and she was rocking away to the music, and > the aide slipped and made her crazy with whatever sound it was making. So > now she doesn't want to wear it cuz she can't control herself and stop the > rocking. She really tried for a while at the concert. I have told her that > I think it will be ok with slow gentle rocking - hopefully just the > vigorous > music rocking was the problem. > > To complicate things, our financial support for medical stuff will end in > April when our income is over the limit. So if we want to do the BAHA, we > need to do it before then or else we'll have to pay the out-of-pocket > expenses. Even if insurance pays a portion - you know our part will be > huge. So it's very motivating to just go ahead and do it. I hate to jump > into something like that without trying the loaner for a reasonable time > period. But I also am pretty darn sure it's the right thing to do. So why > delay giving her good hearing? And why miss out on the financial support > while we wait and see? > > You know that " follow your gut " thing? My gut's been saying this is the > right thing for years. I finally have everything in place to go for it. > But what if the surgery is difficult? What if it doesn't work so well once > we do it? But, gosh, if we wait even a bit, it'll be another entire school > year of fluctuating hearing. As I'm talking this through, I'm thinking we > should move forward with the plan for a BAHA, where the loaner while we > wait > for appts and go through the process, and by the time the surgery date gets > here we'll be certain. > > Thoughts?? > > Oh-and also - we go to new student orientation at ISD on Sunday and her > first day of school is Monday!!!!!! > > Michele W > > Aubrie's mom 8 yrs -- > > Quote Link to comment Share on other sites More sharing options...
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