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Unread 01-30-2009, 08:39 PM   #1
Phi4Sius
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Thumbs up Profound hearing loss + hearing aid questions

Hi everyone

I've been reading a lot of these threads and I'm amazed at some of these experiences. First a little background on me: I'm 29. I've been hearing impaired since around three years old. Profound hearing loss in my left hear (measured at 110 dB across all frequencies - flatlined at 110dB almost), and severe hearing loss in my right ear (60-75 dB). I have a hearing loss which seems to be a volume loss, rather than a clarity loss (in simplest terms...I know from a technical standpoint it gets more complex than that).

I've had a hearing aid in my right ear since around kindergarten, and have since switched to a high powered digital BTE. I LOVE the digital hearing aid, BTW. Wonderful sound quality. Took some getting used to after having an analog my whole life. But I've never regretted switching to digital for one second.

The one thing that I never see mentioned on these boards is the type of hearing loss that one has when these hearing aid threads are started, and I'm wondering if others have a similar situation, because it would be helpful to know the type of hearing loss that we're dealing with when talking about the profound loss + ultra power BTEs. My loss is sensorineural. According to my audiologist for the longest longest time, no hearing aid would help me in my left ear (which I see all the time on these boards so far, but then someone tries something and it seems to work).

I would sincerely appreciate it if someone could chime in regarding their experience with hearing aids and profound hearing loss and what type of hearing loss it is. I'm looking at getting a new aid soon and with the development of technology where it is...perhaps I might finally be able to get something powerful enough to hear out of my left ear. Not hoping for it or expecting...just wanting to see what's out there.
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Unread 01-30-2009, 08:47 PM   #2
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Quote:
Originally Posted by Phi4Sius View Post
Hi everyone

I've been reading a lot of these threads and I'm amazed at some of these experiences. First a little background on me: I'm 29. I've been hearing impaired since around three years old. Profound hearing loss in my left hear (measured at 110 dB across all frequencies - flatlined at 110dB almost), and severe hearing loss in my right ear (60-75 dB). I have a hearing loss which seems to be a volume loss, rather than a clarity loss (in simplest terms...I know from a technical standpoint it gets more complex than that).

I've had a hearing aid in my right ear since around kindergarten, and have since switched to a high powered digital BTE. I LOVE the digital hearing aid, BTW. Wonderful sound quality. Took some getting used to after having an analog my whole life. But I've never regretted switching to digital for one second.

The one thing that I never see mentioned on these boards is the type of hearing loss that one has when these hearing aid threads are started, and I'm wondering if others have a similar situation, because it would be helpful to know the type of hearing loss that we're dealing with when talking about the profound loss + ultra power BTEs. My loss is sensorineural. According to my audiologist for the longest longest time, no hearing aid would help me in my left ear (which I see all the time on these boards so far, but then someone tries something and it seems to work).

I would sincerely appreciate it if someone could chime in regarding their experience with hearing aids and profound hearing loss and what type of hearing loss it is. I'm looking at getting a new aid soon and with the development of technology where it is...perhaps I might finally be able to get something powerful enough to hear out of my left ear. Not hoping for it or expecting...just wanting to see what's out there.
I have a profound sensorineural loss bilaterally, roughly 110/115 at 500 Hz, 120/120 at 1K Hz, and nothing at higher frequencies. Mine was sudden onset with rapid deterioration. For me, HAs provide me sound awareness--loud noises, talking vs no talking, sirens, etc. I have no speech recognition with or without them, but feel somewhat safer in the community when I have them on.
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Unread 01-30-2009, 09:59 PM   #3
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Originally Posted by Phi4Sius View Post
Hi everyone

I've been reading a lot of these threads and I'm amazed at some of these experiences. First a little background on me: I'm 29. I've been hearing impaired since around three years old. Profound hearing loss in my left hear (measured at 110 dB across all frequencies - flatlined at 110dB almost), and severe hearing loss in my right ear (60-75 dB). I have a hearing loss which seems to be a volume loss, rather than a clarity loss (in simplest terms...I know from a technical standpoint it gets more complex than that).

I've had a hearing aid in my right ear since around kindergarten, and have since switched to a high powered digital BTE. I LOVE the digital hearing aid, BTW. Wonderful sound quality. Took some getting used to after having an analog my whole life. But I've never regretted switching to digital for one second.

The one thing that I never see mentioned on these boards is the type of hearing loss that one has when these hearing aid threads are started, and I'm wondering if others have a similar situation, because it would be helpful to know the type of hearing loss that we're dealing with when talking about the profound loss + ultra power BTEs. My loss is sensorineural. According to my audiologist for the longest longest time, no hearing aid would help me in my left ear (which I see all the time on these boards so far, but then someone tries something and it seems to work).

I would sincerely appreciate it if someone could chime in regarding their experience with hearing aids and profound hearing loss and what type of hearing loss it is. I'm looking at getting a new aid soon and with the development of technology where it is...perhaps I might finally be able to get something powerful enough to hear out of my left ear. Not hoping for it or expecting...just wanting to see what's out there.
Have you considered a CI? I know they aren't right for everyone, and that many people don't want one, but since you said you are looking for something powerful to hear from a profound ear, I thought I would throw it out there.
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Unread 01-30-2009, 10:08 PM   #4
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hi faire,

Well, since I started reading all the threads on this forum I've started to think about getting a CI. Especially after reading Miss Kat hearing up to 15 dB from a 95 dB loss? Is that right?!

Edit: Oh my gosh, I just realized you're Miss Kat's mom.
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Unread 01-30-2009, 10:19 PM   #5
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I too have sensorineural hearing loss in both ears. Both in the profound range but I had the added problem of just about zero speech comprehension. From the start of my hearing loss in the left, I could hear sound, but not understand speech so never bothered with an aid. The other ear lasted two years longer before it too crashed and burned. I wore a Oticon delta first (yes, hard to believe two years ago I had mild loss) then had to upgrade to the Widex Inteo less than 6 months later. At this point in time, I no longer wear that aid. I can barely hear the beeps when it is turned on and forget about much else.
I have had the CI surgery, which is a good option if you reach the point where ha's don't help enough. Yes, it is true that the technology of ha's is always improving, so the first choice would be the newest gadget on the market...though that is not always the best choice. We can all give you our personal opinions/experiences, but it all comes down to what you and your audi decide is best for you. Whatever you decide to try, make sure you get to take it for a test drive first. Have the audi tweak it as often as you need and make sure you are happy with it. If not, return and try again. After all, it is your hearing and you will know what works the best for you.
A lot of folks here love the phonak brand. It was not available in my area, or perhaps just not through my audi, who knows? Others swear by starkey..it just depends on you and your own hearing loss.
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Unread 01-30-2009, 10:24 PM   #6
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hi faire,

Well, since I started reading all the threads on this forum I've started to think about getting a CI. Especially after reading Miss Kat hearing up to 15 dB from a 95 dB loss? Is that right?!

Edit: Oh my gosh, I just realized you're Miss Kat's mom.
Yes. She hears at 15 db and her loss actually dipped down to 105 db in the ear we implanted. WARNING: She was born hearing and didn't start to lose her hearing until she was 1, and then she was only HOH until about a year or so ago. She progressed from a 65 db loss to 95 ish in 3 1/2 years. Her results might be because of her previous hearing experience!
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Unread 01-30-2009, 10:31 PM   #7
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I'm reading your blog right now. Almost reminds me of when I got my first hearing aid (I don't remember much about it...it was too long ago). I only remember getting into the car from getting my hearing aid for the first time and hearing EVERYthing...even if it was only from my right ear.

How is she doing now since surgery? Was your daughter's hearing loss sensorineural or another type of loss?
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Unread 01-30-2009, 10:35 PM   #8
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I'm reading your blog right now. Almost reminds me of when I got my first hearing aid (I don't remember much about it...it was too long ago). I only remember getting into the car from getting my hearing aid for the first time and hearing EVERYthing...even if it was only from my right ear.

How is she doing now since surgery? Was your daughter's hearing loss sensorineural or another type of loss?
It is sensorinural. She lost her hearing very quickly, and aids worked well for awhile, but just before the CI, they didn't. She was frustrated that she had lost things she could hear before. She never really had access to speech before, but now she really really does!
I am so happy that we did it! She is hearing amazingly well.
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Unread 01-30-2009, 10:49 PM   #9
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Faire,

I'll be reading the rest of your blog tonight it seems. Fascinating about Cochlear implants. Looks like I'll be investigating it as an option as well. I'll be meeting with my audiologist next Thursday and I'll talk to him about it (and other ultra power hearing aids) and see what he thinks.

BTW, I can't believe your first audiologist treated you like that...all territorial and forbidding the CI and everything...I'm appalled. It's unbelievable the lengths some people go!
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Unread 01-31-2009, 11:29 AM   #10
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What kind hearing aid are you currently using?
You should try oticon sumo dm it have 85 full on gain so with your loss you could hear up to 25-30 db. (No promise tho) it put all power toward your residual hearing, most commonly in low frequency.
Or Phonak Naida UP its hearing aid with high frequency compressed into low frequency so you can hear what's in high's in area where your residual hearing only can hear.
If your profound ear can't handle the amplification then consider CI
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Unread 01-31-2009, 11:55 AM   #11
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I actually miss my analog hearing aids.

I went through a couple different hearing aids while growing up. In 1993, I got an analog hearing aid. It lasted me until 2007... 14 years! I did get a digital hearing aid in 1999, but I only wore it in class when I was at RIT. It only lasted 6 months before it needed a tune up. Then another 6 months again. So, I got tired of having it fixed and switched back to my analog hearing aid full-time. My analog hearing aid finally choked and I got a new digital hearing aid in May 2007. Yet, I still miss my analog hearing aid.
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Unread 01-31-2009, 12:13 PM   #12
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SkullChick- Currently, I wear the GN ReSound Canta 7 770D. Best hearing aid I've ever worn, IMO. I don't know if my profound ear can or can't handle the amplification. We've never tried. It's always been "no hearing aid can ever help me in my left ear enough" but with the stories I'm reading on this board perhaps there finally IS hope. If I have to, I'll go through any and all kinds of speech therapy required. I've done it before and I'll do it again. Just the possibility of hearing sound out of my left ear for the first time in more than 20 years is exciting. However, I know not to expect or hope for anything. I'll just see what happens when I visit my audiologist on Thursday and find out what he says about these aids. He is very experienced with fitting the latest tech and I believe he has both Phonak and Oticon. He definitely has the Phonak because we were discussing it at length before.

For me I'm slightly uncomfortable with the idea of the surgical implant (having worn a hearing aid all my life) but I want to investigate all of my options first to see if HAs have finally gotten advanced enough to where they really can help me in my profound ear. CIs are a possibility I'm investigating after all the incredible results I've seen.

VamPyroX - I think the charm in the analog hearing aids are their intense amplification of mid and lower range signals. They deliver a punch that's missing in the digitals. I had a heck of a time adjusting to the much quieter signal of the digital the first few weeks but I would not go back if presented with a choice. My analog was 10 years old when I retired it for the new digital and it was still going strong. My 770D has lasted me 3 years so far without having to get a tune up. The only problem I had with it was when I was sweating into it and had to have it replaced with my audiologist after being destroyed by the sweat. Hehehehehe
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Unread 01-31-2009, 12:25 PM   #13
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i have a pair of oticon 380Ps that still work perfectly to this day (according to my ci audi) giving 19 years of performance. i used them daily for 15 years without any need for repair and continued wearing them until i received my second ci in 2006. not bad for analog hearing aids! my digitals, on the other hand (oticon digifocus II super power bte's), left alot to be desired and needed repair twice during the first year i had them.
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Unread 01-31-2009, 05:15 PM   #14
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Well, I've had profound hearing loss my whole life. 96 db loss in my left, 88db loss in my right. The last few years has dipped it to 105 db in my left, and 94 or 96 in my right. Hence why I went for CI.

I've wore hearing aids my whole life, in both ears.

Word of warning - If you will try hearing aids in your left, it may HURT and sound very loud and feel the vibrations. It's because you haven't exposed your ear nerves in a very long time so they're getting a wake up call. That's why I always try to encourage people to wear hearing aids for the ear that they're getting the surgery because it will at least expose them to sound regardless if you can't hear it that well.

I know that if I don't wear my HA for a month, and then I put the HA on, it hurts.

I got the CI because my hearing was progressively getting worse to the point where no aids will help (I had no clue about Navidas, and others, so I never even tried). And since then I do not regret getting two CI a bit.

Good luck
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Unread 01-31-2009, 07:42 PM   #15
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Lady - what was your audiogram like after you ended up getting the HAs compared to when you got the CIs? What dB level were you hearing at with the HAs?

Also, what type of hearing loss do you have? (sensorineural, etc.)?
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Unread 01-31-2009, 08:05 PM   #16
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Phi, I'd definitly look into the CI, but also tell your audi that you want to test drive some of the new HAs first. It does sound like your loss is deep profound or basicly unaidable, BUT I do know of a girl our age (20's) who had a really deep profound "unaidable" loss. It was so bad she wore a body worn aid back in the 80's. She recently tried a new hearing aid, and was actually getting SPEECH from them! I think it might be worth it to do an intensive trial run just to see if it's possible you might benifit from being aided.
Do you see a audi who is experinaced with younger dhh folks?
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Unread 01-31-2009, 09:33 PM   #17
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deafdyke - How is she doing now with the new HA? And, how is her speech/sound understanding? And yes, my audi is experienced with just about every type of hearing loss imaginable, including mine (been going to him for at least 10 years that I remember - he's basically 10 minutes away from me). Also, for me, he's been the best audiologist I've ever had.

This is pretty exciting that other people with similar hearing losses are getting some benefit from the new HAs!! I know that it could be the same situation as I've always been - that I can't benefit at all - but at the very least there seems to be a chance and I want to take it. It's better knowing I have no chance at all than always going "What if..."

WHAT the...?! The Phonak Naida III and V Ultra Power have 90 dB full on gain and 144 dB output SPL?! I almost can't believe that. I'll be asking my audi about these on Thursday for sure.
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Unread 01-31-2009, 11:11 PM   #18
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Well I do know that she got a CI for the other ear. I really don't know too much as her mom hasn't mentioned it too much lately.
But I do think it would be a good idea just to take the newer aids for a test drive, just to see if you might not have to undergo surgery. I also think that with the economy being so sucky, a lot of insurerers (including the really generous ones) are going to start being really strict as to who is a canidate for implantation.
With the test drive you could prove that YES, you have exhausted all possible
avenues.
Even if you used an aid that just increased speech perception a bit or whatever, with the inut from the other aid, it could work out well for you...you know? I'm not against CI at all. Just think that with the fact that sucessful aiding is so hit or miss, it's best to completely exhaust all possible avenues. Make sense? Especially since you have really good speech input with your other aid. If you had poor speech perception with your other aid, I'd tell you to go for the CI right off the bat.
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Unread 02-01-2009, 01:11 AM   #19
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deafdyke- Yeah, my speech perception is just fine. I function so well with my right ear that people don't even know I have a hearing aid unless I tell them. I believe the whole concern was that having my left ear with a hearing aid would have detracted from the good hearing in my right ear. I still don't see how that could be possible, especially with the new HA technology and once I've gotten used to it and had some additional training under my belt. I'm sure I'll need some additional speech training to get my ears working together properly like they're supposed to. I don't care...I just want to see if something finally works.

I'm certainly not against CI either...I'm just uncomfortable with something like that being performed on my ears until I know exactly what I can and can't do. If I find out that I literally can't use my left ear at all with an HA (even with the new aids reaching profound hearing loss levels) like they've been saying all these years then more than likely I'll end up getting a CI. At least I won't have lost anything if they screw something up with my left ear during surgery. j/k I know that the chance of something going wrong with surgery is nill, but I still want to make sure of my options before I do something like that, you know?
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Unread 02-01-2009, 08:34 AM   #20
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to the op,

if you are abl e to undetand speech wwelll with yuur right ear then i would not opr for a ci. i wou'd wait until you'rs speech discrmination in that ear is pooer than it is.

<sorry for typs cts boterhign me>
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Unread 02-01-2009, 11:28 AM   #21
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deafdyke - How is she doing now with the new HA? And, how is her speech/sound understanding? And yes, my audi is experienced with just about every type of hearing loss imaginable, including mine (been going to him for at least 10 years that I remember - he's basically 10 minutes away from me). Also, for me, he's been the best audiologist I've ever had.

This is pretty exciting that other people with similar hearing losses are getting some benefit from the new HAs!! I know that it could be the same situation as I've always been - that I can't benefit at all - but at the very least there seems to be a chance and I want to take it. It's better knowing I have no chance at all than always going "What if..."

WHAT the...?! The Phonak Naida III and V Ultra Power have 90 dB full on gain and 144 dB output SPL?! I almost can't believe that. I'll be asking my audi about these on Thursday for sure.
I think it depends on what you are hoping to get get from that ear. If you want sound awareness than a hearing aid would work great and you have gotten great advice on that.
On the other hand, if you are hoping for help with speech and lipreading, you might need to get a CI.
Yes, I love the CI and I am blantently advertising for it! I just really never thought it worked as well as it does, and I have been proven wrong! It has been the change from not understanding speech to picking it up with ease and without direct instruction for my daughter. I can't say enough good things!!
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Unread 02-01-2009, 02:22 PM   #22
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faire jour - I have a couple of expectations when it comes to the new HAs:

1. No sound awareness at all (which is a big possibility considering that my left ear has been profoundly deaf for 27 years now).

2. Extremely muddy, no discriminatory ability whatsoever very quiet type sound.

3. Extremely muddy, no discriminatory ability whatsoever very LOUD type of sound.

4. Very mild discriminatory ability with speech and other very limited sounds.

I find #4 to be a very distant possibility, #s 1-3 being the most realistic. Quite honestly I'm not expecting much. With the new HAs, I want to satisfy my curiosity more than anything else and see if, perhaps, the ones who have been telling me all along that HAs won't help are right. Plus, who knows what will happen with technology over the next five years? They may come out with double the full-on gain and output SPL with perfect speech discrimination abilities. Haha. Oh, well. At least with this, I'll know for sure for the next five years anyways. Plus, I'll have obtained a killer HA for my right ear out of this too.

re: CI - I am quite amazed with the results your daughter is experiencing. I can't believe she's hearing up to 15 dB...I have never in my life been close to that (well, perhaps at 1 and 2 years old I was). Going from a profound loss to 15 dB is a miracle in itself. I'll certainly be investigating CIs if the new HAs don't work out.
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Unread 02-01-2009, 02:30 PM   #23
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faire jour - I have a couple of expectations when it comes to the new HAs:

1. No sound awareness at all (which is a big possibility considering that my left ear has been profoundly deaf for 27 years now).

2. Extremely muddy, no discriminatory ability whatsoever very quiet type sound.

3. Extremely muddy, no discriminatory ability whatsoever very LOUD type of sound.

4. Very mild discriminatory ability with speech and other very limited sounds.

I find #4 to be a very distant possibility, #s 1-3 being the most realistic. Quite honestly I'm not expecting much. With the new HAs, I want to satisfy my curiosity more than anything else and see if, perhaps, the ones who have been telling me all along that HAs won't help are right. Plus, who knows what will happen with technology over the next five years? They may come out with double the full-on gain and output SPL with perfect speech discrimination abilities. Haha. Oh, well. At least with this, I'll know for sure for the next five years anyways. Plus, I'll have obtained a killer HA for my right ear out of this too.

re: CI - I am quite amazed with the results your daughter is experiencing. I can't believe she's hearing up to 15 dB...I have never in my life been close to that (well, perhaps at 1 and 2 years old I was). Going from a profound loss to 15 dB is a miracle in itself. I'll certainly be investigating CIs if the new HAs don't work out.
And to tell the truth, Miss Kat's results aren't terrible unusual for kids. Adults, I don't know about, but for kids, it's not uncommon.
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Unread 02-01-2009, 02:56 PM   #24
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adults tend to hear in the 20-30 db range with a ci. chilren usaully hear around 15 db. after having severe-profound haring loss for 10 yers prior to receiving my first ci, i'm able to hear between 15 and 30 db.
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Unread 02-01-2009, 03:21 PM   #25
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HearAgain - How is your speech perception/understanding with the CI? How are other sounds such as music, etc.?
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Unread 02-01-2009, 03:35 PM   #26
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i think i do need a better hearing aid but im going for a hearing test in may and they will tell me then if im doing on or not.


what db can my type of hearing aid go up to? because they turned my hearing aid up to the top range and im just wonderin
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Unread 02-01-2009, 07:00 PM   #27
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With my intense research over the last couple days, for my hearing loss I've narrowed it down to the Oticon Sumo and the Phonak Naida III or V UltraPower. I'll discuss both of these in depth with my audi on Thursday. It appears the Oticon Sumo may actually help my left ear with its profound hearing loss, but of course I won't know for sure until I see what my audi says then. And I won't know anything even then...gotta try it on my left ear first.

Can anyone provide feedback about their experience with the Oticon Sumo along with details about their hearing loss (type of loss, dB range, bilateral or unilateral, etc.)?

Also, does the Oticon sumo really use those odd looking cords with the very small earpiece on the end rather than a real earmold? Since my ears have stopped growing since my last aid and I haven't had to get a new earmold for several years, that looks like a very very nice option to have.

Thanks a bunch for everyone's feedback and info!!!!
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Unread 02-01-2009, 07:56 PM   #28
deafdyke
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Oh, so you would be satisfied with just some hearing in that ear? Excellent!
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Unread 02-01-2009, 08:35 PM   #29
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deafdyke- Yup. Still, I won't find out until Thursday so I'm kind of shooting myself in the foot by speculating. We'll see what my audi says then. The wait until then sucks, though. LOL
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Unread 02-01-2009, 08:37 PM   #30
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Originally Posted by Phi4Sius View Post
HearAgain - How is your speech perception/understanding with the CI? How are other sounds such as music, etc.?
hi there,

my speech percption with my ci's is quitegood in quiet on-one-one situtions: 98%. in backgrund noi se, it's 90%, but i do havemore difficlty haring with background noiseand use tactile terps ad other commnication methds for thedeafblind, music sounds wonderful with my ci's -- altuough tis wasn't alwayss the case. until recntly, high frequencies sunded off-key but ever since 12 hihg feuquncy elecrrortrodes were turned off, they soud natureal now and very, vrty clear. no complnaints at all.
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