I have some questions after reading this CI blog.

[deafdude1]

Grendel’s Kitchen oo, ah, ee, sh, s, m

This is her audiogram showing an 80-95db HL. Im a little surprised her parents opted to give her bilateral CIs. My hearing loss was similiar to hers when I was little and I did great with HA technology of the early 1980s! FDA requires a 90db+ loss, her's is less than that in several frequencies.

Grendel’s Kitchen ABR under general anesthesia

She refers to CI as "this bionic brain implant" and "brain surgery" but a CI doesn't touch the brain whatsoever.

She also says: "although 95% of children in Li-Li’s situation receive no benefit, 5% do pick up some environment sounds like alarms, jet engines, but no vocals"

Where did she get that 95%? A 90db HL can very easily be aided as high as 20db(in 1998, my 100db HL was aided to 35db) and give you access to all the environmental sounds a CI can.(I could hear even the highs back then) Speech won't be as clear as the average CI but there very likley will be some ability to understand speech(like I did and still do) and combined with lipreading, one can score over 80%.

Children’s Hospital Cochlear Implant Evaluation 8.9.07 Li-Li’s Language Log

Since when is aiding a 90db HL to 40-50db considered "appropriate amplification" especially when she has only awareness to loud environmental sounds? I mentioned before how much benefit HAs gave me and even today I still get way more benefit than she does. I wish more gain was tried on her HAs. My audiologists over the years generally gave me near maximum gains and this is what let me hear at 25-35db in most frequencies. Back when I had analog HAs, the volume dial was simply cranked as high without feedback. This put me well into the speech banana.

 

[Lissa]

Grendel’s Kitchen oo, ah, ee, sh, s, m

This is her audiogram showing an 80-95db HL. Im a little surprised her parents opted to give her bilateral CIs. My hearing loss was similiar to hers when I was little and I did great with HA technology of the early 1980s! FDA requires a 90db+ loss, her's is less than that in several frequencies.

I suppose CI criteria is kinda loose for children as it's important to give them a good start in life, to help them build on language and hearing.

Grendel’s Kitchen ABR under general anesthesia

She refers to CI as "this bionic brain implant" and "brain surgery" but a CI doesn't touch the brain whatsoever.
It doesnt touch the brain, if It did I would have not had it done!

She also says: "although 95% of children in Li-Li’s situation receive no benefit, 5% do pick up some environment sounds like alarms, jet engines, but no vocals"

Where did she get that 95%? A 90db HL can very easily be aided as high as 20db(in 1998, my 100db HL was aided to 35db) and give you access to all the environmental sounds a CI can.(I could hear even the highs back then) Speech won't be as clear as the average CI but there very likley will be some ability to understand speech(like I did and still do) and combined with lipreading, one can score over 80%.

Why don't you ask HER instead of us?

Children’s Hospital Cochlear Implant Evaluation 8.9.07 Li-Li’s Language Log

Since when is aiding a 90db HL to 40-50db considered "appropriate amplification" especially when she has only awareness to loud environmental sounds? I mentioned before how much benefit HAs gave me and even today I still get way more benefit than she does. I wish more gain was tried on her HAs. My audiologists over the years generally gave me near maximum gains and this is what let me hear at 25-35db in most frequencies. Back when I had analog HAs, the volume dial was simply cranked as high without feedback. This put me well into the speech banana.

Everybody's different. Just because something works for you doesnt mean it works for somebody else. Maybe she was not able to hear any more than that.

 

[deafdude1]

Everybody's different. Just because something works for you doesnt mean it works for somebody else. Maybe she was not able to hear any more than that.

How do we know this? It hasn't been ruled out. I know everyone is different, but everything must first be tried on everyone. Im sure alot more than 5% of the profoundly deaf would do great with high power HAs.

I suppose CI criteria is kinda loose for children as it's important to give them a good start in life, to help them build on language and hearing.

The thing is many who get CI could have built language on high power HAs, I am one such example.

 

[lovezebras]

EVERYONE is different... her speeci discrim could have SUCKED! No two hearing losses are alike and u should NOT max out gains on an HA that causes distortion alot of the time...just cuz u can do it and that makes u happy fine. but thats not the case for a lot of other ha users. DD You cannot compare everyones hearing loss to urs

 

[sr171soars]

Hearing just cannot be broken down into its physical components and violá one hears. While it is important, there is also cognitive issues and how the brain perceives sounds. We haven't even gotten to the speech component which is yet another ball of wax. Intellegence plays a huge role in how much language one can learn. Some people need more cues than others and on it goes. There are just too many layers in respect to hearing to expect simple solutions by amplication (in whatever form) to solve the "problem".

This is why it is so dangerous to attempt to "compare" one's hearing even if between two people have essentially the same audiogram. Case in point, I with a CI and even in my HA days (before my hearing really went south), can understand foreign accents better than my wife who has excellent hearing. She will always be able to hear things that I cannot so go figure! So, it isn't always just a matter of hearing better.

In some cases, it is simply trial and error no matter how much we know and generally can expect of people.

 

[SkullChick]

EVERYONE is different... her speeci discrim could have SUCKED! No two hearing losses are alike and u should NOT max out gains on an HA that causes distortion alot of the time...just cuz u can do it and that makes u happy fine. but thats not the case for a lot of other ha users. DD You cannot compare everyones hearing loss to urs

DeafDude you should really listen to her, this one used to be hearing. She'd know, unlike you

 

[john57]

The little girl is involved with the Deaf community and has exposure to ASL and her CI hearing is about 22db as shown on the BLOG.

 

[faire_jour]

I happen to know Li-li's mom. Did you get her permission to repost this? If not, I find this really rude and I think you need to back off and mind your own business.

 

[GrendelQ]

some reasons for Li-Li's path

Hi DeafDude1, I realize you might just be curious about the details that played into our decision, but your questions sort of read as though you think that Li-Li could hear just fine and maybe I went a little crazy and slapped some some high-tech accessories into her head for the heck of it. If you are wondering whether Li-Li could have achieved useful sounds through HAs -- no, we tried, and couldn't. With CIs, she has access to sign and sound, with both giving her all kinds of opportunities for expanded communication.

We didn't push any FDA rules aside, she was a clear candidate for a CI, not even remotely near the borderline. Could be that my rendering of Li-Li's audiogram, taken from a scrawled page similar to the one you've shown, isn't as exact as it could be: at 1.5 YO, Li-Li couldn't hear sounds, not even environmental sounds. This booth test audiogram was followed by ABR testing under anesthesia at much higher sound levels than would have been comfortable for a wide-awake toddler. (It's also harder to keep toddlers in place.)

Surgery wasn't an easy decision, both times around: We tried very strong HAs for 4-5 months and were able to achieve the levels you see roughly represented: not within the speech banana, sadly. So, with HAs pounding away at her ears with intense sound, she could hear her dog barking at her side, but not words. With or without HAs, she couldn't hear a useful level of sound.

"She refers to CI as "this bionic brain implant" and "brain surgery" but a CI doesn't touch the brain whatsoever." Are you referring to the post title playing on the idiomatic phrase: "It's not brain surgery..."? I am very much aware of the science behind the implant and include some pretty detailed descriptions of the surgical process. My blog is not an academic paper or even a news article filled w/citations -- it's written primarily for Li-Li's grandparents and other family/friends, and I often use casual terms rather than strictly scientific terms to communicate scope. Others are welcome to read it, I know I devoured parent-of-deaf-child blogs when going through the process, but I do not, in any way, put myself out there as a medical professional. When I ask "what's next, a bionic brain implant?" in one entry, I was not claiming that a CI = brain implant. When I called one possible solution a "borg-like brain implant", I was just starting to explore cochlear implants and other options, relating what my impressions and fears were at the time, months and months before we took the step. I had only just met Li-Li a month before writing those posts, and it took me a few weeks to learn what was out there, from decibels, ABRs and audiograms to cochlear implants, brainstem implants, digital hearing aids, hair cell regen, etc. -- these are not usually covered in the 'how to diaper and feed your infant' lessons I had been expecting to learn in those first few weeks with Li-Li. And frankly, our focus at that time was to make a home for this wonderful child who had come from a year of very poor medical care in an institutional environment, who was just barely crawling, without any access to language (signed or spoken). I also refer to Li-Li as both a ciborg and a little bunny rabbit, at times, but I do realize she's human .

"She also says: "although 95% of children in Li-Li’s situation receive no benefit, 5% do pick up some environment sounds like alarms, jet engines, but no vocals" Where did she get that 95%?" >> from my audi, who explained that the #s alone won't tell the story, and even with 90-95-100 db hl levels, we should try HAs -- we thought there could be a chance that they might work at her level.

"Since when is aiding a 90db HL to 40-50db considered "appropriate amplification" especially when she has only awareness to loud environmental sounds?" Exactly, it's not. HAs didn't work for her. She wasn't near the speech banana with powerful aids, it was a struggle to get her to keep them on her, given the lack of benefit, and we went ahead and pursued getting a CI after receiving this report.

We have a subsequent audiogram from last year that I'll share at some point-- I'm so very behind on the blog, tho' you've inspired me to dust it off -- it shows that, surprisingly, after surgery Li-Li didn't lose any residual hearing in her 1st implanted ear, but that her left, unimplanted ear had deteriorated further to a significant degree. I should also be getting a new audiogram soon from a recent visit this fall. Now we might see some deterioration (unaided) in both this time, as they've basically been atrophying for the past year. I think her tests w/CIs on should be even better than what we saw in this one, at which time she had just gotten her first CI. But as others have said, the audiogram is just one of many measures and is conducted in a pretty rarified atmosphere. What matters is comprehension and how useful that sound is.

Outside the booth/box, since going bilateral, we've seen enormous improvement: she's a chatterbox, she sings on pitch and plays piano, and uses both spoken language and sign with equal facility. We've whispered the word "chocolate" and she's come running in from a room away, with a television on. She's testing as mildly delayed in language for a child her age, primarily due to a gap in vocabulary. It seems like a pretty big gap to me -- but then I'm expecting her to be reading and reciting Shakespeare by 4. We'll continue to focus on articulation a little more this year and hope to push forward in vocab. I realize that being enrolled at a school for the deaf where her day is split between auditory access and voice-off will require us to put a great deal of focused effort into developing spoken language at home and during the summers, but I want her to have two fluent modes of communication and she's thriving in this environment.

- Li-Li's Mom

 

[deafdude1]

I want to say to everyone that I never meant to be rude and this thread isn't about speaking against CIs. I found your blog on Google as I was researching cochlear implants, hearing aids, deafness, etc. After reading your blog, I had some questions which I posted here in the hopes of getting answers that would teach me more about CIs, HAs and deafness. Ive read many other CI blogs and to be honest, I do not always understand why they chose CI. I respect their choice(they are adults and old enough to decide), but it has left me surprised because CI certainly comes with alot of risks, it usually destroys your residual hearing and they won't be able to try whatever new HAs that come out in the implanted ear. Furthermore, their audiograms(some of which are better than mine!) and/or speech comphrension show they are or should be getting significent benefit from very powerful HAs.

Hi DeafDude1, I realize you might just be curious about the details that played into our decision, but your questions sort of read as though you think that Li-Li could hear just fine and maybe I went a little crazy and slapped some some high-tech accessories into her head for the heck of it. If you are wondering whether Li-Li could have achieved useful sounds through HAs -- no, we tried, and couldn't. With CIs, she has access to sign and sound, with both giving her all kinds of opportunities for expanded communication.

I wasn't thinking she could hear fine(as in perfect) with HAs but on the other hand I was surprised she was hearing as poorly as your blog says. I have read plenty of times how CI is recommended even on those who are still getting some benefits from HAs. There's a ton of hype going on with CIs and I read how they are being marketed as being close to a cure and giving you nearly normal hearing. This has created alot of unrealistic expectations and they are disapointed that they are still deaf after CI and that their hearing is nowhere near perfect as they were hoping for(although for most, CI has been an improvement vs. HAs) I was wondering if they got their mandatory 3 month trial with the best HAs. Everyone must try several of the best HAs and consider CI as a last resort. I am not debating against CI here, just how can they be so sure a different HA wouldn't give them way more benefit? I know a guy who went from 20% speech to 80% speech when he tried a different and better HA(the same HAs I wear by the way)

I am glad you did try. I would be curious if everyone who gets a CI actually did follow thru by trying different and better HAs first. Even if the audiologist "thinks" the best HA's "might" not help, everyone should be able to get a free 30-90 day trial anyway. If those HAs help, then great! If they don't help, then there was no harm trying and you will be able to prove that HAs gave no benefit in your case towards CI candidacy.

We didn't push any FDA rules aside, she was a clear candidate for a CI, not even remotely near the borderline. Could be that my rendering of Li-Li's audiogram, taken from a scrawled page similar to the one you've shown, isn't as exact as it could be: at 1.5 YO, Li-Li couldn't hear sounds, not even environmental sounds. This booth test audiogram was followed by ABR testing under anesthesia at much higher sound levels than would have been comfortable for a wide-awake toddler.

If you can scan any audiograms and show them here, ill try to read it from the scan. FDA requires a 90db HL and less than 30% speech(child speech test) in order to implant young children. The requirements for adults are also 90db except in the low frequencies and less than 50% speech(HINT-Q). I was the same way, my parents suspected my hearing loss when I was 2 months old and I got my first HAs at 4 months. The ABR showed a severe HL, im guessing 80-90db PTA. I didn't hear anything unaided though, my parents tried all kinds of loud sounds and I didn't even flinch. How high in db HL was the ABR able to go to?

Surgery wasn't an easy decision, both times around: We tried very strong HAs for 4-5 months and were able to achieve the levels you see roughly represented: not within the speech banana, sadly. So, with HAs pounding away at her ears with intense sound, she could hear her dog barking at her side, but not words. With or without HAs, she couldn't hear a useful level of sound.

How much gain/amplification were those HAs able to dish out? I do know that today's powerful HAs can dish out 70db of amplification and put even a profoundly deaf person with 100db HL at 30db aided and well into the speech banana. So I was surprised when you said she heard at moderate levels aided. This is something I am curious about and want to learn. My audiologists over the years have always maxed out my HAs so I could hear the most sounds and to get as high into the speech banana as possible. Even with power HAs, of course I didn't hear normally but they let me develop speech and speak clearly despite a severe-profound loss. I already know everyone's different and not everyone benefits to the same extent, but I was wondering if maximum gains/amplification was ever tried and if not, could this be the reason for some of the cases?

from my audi, who explained that the #s alone won't tell the story, and even with 90-95-100 db hl levels, we should try HAs -- we thought there could be a chance that they might work at her level.

I am wondering again if more amplification would have greatly increased the odds of HAs giving at least partial benefit or would any amount of amplification not matter? Alicia says that maximum gains causes alot of distortion(I am still researching about this on Google), why then did all my audiologists max out the gains and say this was the only way to get me into the speech banana? Wouldn't hearing some distorted speech be better than hearing no speech? Also didn't your audiologist increase the gains again on your HAs, Alicia and you understand alot of speech in quiet? I find it hard to believe only 5% of the profoundly deaf(90db HL or worse) get any benefit from HAs, this is not what I was told when I was growing up. Could a deaf person still understand speech by reading lips and learn to speak clearly if he had any amount of residual hearing?

I remember when I was a little boy, I was told that you were hearing if you can hear without HAs, you were hearing impaired if you can't hear without HAs but could hear with HAs and that you were deaf if you couldn't hear with HAs. Those who were deaf had an infinite hearing loss, they couldn't hear at 90db, 100db, 120db, etc so they could not hear with HAs. Those who still had some residual hearing were considered hearing impaired and could hear with HAs.

Exactly, it's not. HAs didn't work for her. She wasn't near the speech banana with powerful aids, it was a struggle to get her to keep them on her, given the lack of benefit, and we went ahead and pursued getting a CI after receiving this report.

As with the answers above, I am wondering why she couldn't get to the speech banana with a 90db or even 100db loss. Any idea what db gain was programmed into her HAs? If it was 70db of gain, I would have to research on Google why a 70db gain translated into only improving her hearing by 50db at most. I did read one article that said a gain of xx would not translate into exactly xx but more like yy improvement but that yy was very close to xx by a few db and almost always by less than 10db behind.

We have a subsequent audiogram from last year that I'll share at some point-- I'm so very behind on the blog, tho' you've inspired me to dust it off -- it shows that, surprisingly, after surgery Li-Li didn't lose any residual hearing in her 1st implanted ear

Any idea on the odds of not losing any residual hearing? It's my biggest fear for a CI. Id like to keep all my residual hearing for several good reasons. I look forward to seeing the audiograms and her speech comphrension scores.
Thanks for your reply and answering some questions. There's so much more I can learn.

 

[shel90]

Why are getting CIs so complicated? Either the deaf person/kid can hear well or they dont. Just like with HAs.

Seriously..I think out there (not here only) people analyze CIs too much. Go and enjoy life! There is more to life than how everyone can hear with their CIs.

Not targeted at you, DD but Iam getting impatient with so many hearing people overanalyzing deafness and CIs. :roll:

 

[lovezebras]

No hearing distorted speech isn't better than not hearing it at all...hearing distorted sounds is frustrating and annoying if not more frustrating then just not hearing it...and the reason why I do so well with hearing words in quiet better on my speech discrim tests is that I used to be hearing...

I KNOW what all words sound like and i have excellent vocabulary, always have..throughout my education I was always in advanced english, specifically reading, vocab, spelling etc. So with lipreading and hearing the word i can more or less guess what's being said because as long as I hear apart of it i know what the word is. Not all the time..but most..that's the only reason why I do well on my speech discrim tests in quiet. If there's noise i don't do as well cuz i can't hear the word at all.

If your audi thinks my MAXING out everything on ur ha's and that's what u like then stick with it...that's not the case for many other power aid users or anyone with severe or profound losses...I upped my hearing aids power and i said it's almost maxed but it's not maxed out...if it gets to that point i get new hearing aids.

 

[faire_jour]

Deafdude,
You keep saying that people "can be amplified better" and that they "can do better with hearing aids" but you keep forgetting one HUGE point:
YOU ARE NOT AN AUDIOLOGIST!!!!!!! Li-li`s mom, and I and every other parent, take our children to audiological professionals, with Doctorial degrees and years and years of experience with fitting hearing aids and ci's.
How long have you been learning about implants? How many classes or lectures have you taken? How many surgeries have you been involved with? How many children have you seen activated and followed for years? How many research studies have you conducted?
The answer to all these questions is none. So why do you think you have the right to question the work of experienced professionals? What you think you know about hearing aids and CI`s wouldn`t fill the pinky of the audiologist`s Miss Kat has seen. I think you need to make an appointment with a real CI audiologist and talk about the pro`s and cons with someone who is actually trained and well informed.

 

[GrendelQ]

Shel90, this thread isn't actually about analyzing cochlear implants and CI results. DD is asking questions about analyzing audiograms and hearing aid responses. DD posted some questions directed at me, some specific to Li-Li's audiogram.

I disagree with your comment that hearing people shouldn't "overanalyze" the decision to get a CI or not: for my daughter, I thought it was a very big decision that warranted a great deal of thought and analysis. But that's just me, the amount of thought you put into raising your child is not for me to judge. I do think it's just a bit odd for you to argue that parents are putting too much thought into decision-making around getting a CI.

 

[somedeafdudefromPNW]

GrendelQ, she's referring to the obsession that some people have that "CI fixed everything" in real life. Kinda like when someone converted... they have to remind everyone that they've converted.

 

[set2]

Deafdude,

I agree with faire Jour.I If you want to learn more about hearing loss and implants, ask doctors and audiolgists. We can provide you with our experiences with implants/HAs but we don't have our AuDs or MDs. When you see your audioloist again you should ask them more about implants.


If you are happy the way things are then fine but please stop with the posts that accuse people with hearing a bit better than yours of not trying hard enough with the hearing aids. CI centers are not grabbing random people off the streets and implanting them. You seem to think the criteria is that lenient.

Some of us chose CIs because we wanted more and clearer sounds. We wanted better access to speech and to be less reliant on lip reading. I'm sorry but lipreading is tiring and not always possible. Louder (more gain) is not always better in terms of clarity and Pain.

 

[GrendelQ]

GrendelQ, she's referring to the obsession that some people have that "CI fixed everything" in real life. Kinda like when someone converted... they have to remind everyone that they've converted.

I don't see the relevance of that warning here. But as an infrequent participant, I may not have picked up the responsibility certain posters in the forum's have to scan all threads mentioning CIs and quickly post an automatic disclaimer that "CIs don't fix everything!!" -- even if no one is making that claim. That sort of "impatient" bomb-throwing seems to be simply ornery obstructionism designed to turn what could be an informative conversation into an argument. But then, as Shel90 said, some people really need to just go 'enjoy life'.

 

[deafdyke]

If you are wondering whether Li-Li could have achieved useful sounds through HAs -- no, we tried, and couldn't. With CIs, she has access to sign and sound, with both giving her all kinds of opportunities for expanded communication.

We didn't push any FDA rules aside, she was a clear candidate for a CI, not even remotely near the borderline.

EXCELLENT!!!!!!!!!!!!!!!!!!!!!!!!!
Just wondering thou...........why'd you opt for bilateral implants? From what I understand, the only advantage of bilateral implants is sound localization and better hearing in noisy situtions. I know that a lot of kids get a lot of benifit from a bimodal approach.
Then again, CI is 100% covered by insurance and HAs aren't.

She's testing as mildly delayed in language for a child her age, primarily due to a gap in vocabulary. It seems like a pretty big gap to me

Well just remember that the gross majority of dhh little kids still have significent spoken language delays. That's why oral preschools/ elementary programs are still common.
Remember too, that until recently a lot of dhh kids weren't even dx until they were little kids.

 

[overthepond]

Deafdude,

I agree with faire Jour.I If you want to learn more about hearing loss and implants, ask doctors and audiolgists. We can provide you with our experiences with implants/HAs but we don't have our AuDs or MDs. When you see your audioloist again you should ask them more about implants.


If you are happy the way things are then fine but please stop with the posts that accuse people with hearing a bit better than yours of not trying hard enough with the hearing aids. CI centers are not grabbing random people off the streets and implanting them. You seem to think the criteria is that lenient.

Some of us chose CIs because we wanted more and clearer sounds. We wanted better access to speech and to be less reliant on lip reading. I'm sorry but lipreading is tiring and not always possible. Louder (more gain) is not always better in terms of clarity and Pain.

Well said.

 

[shel90]

Shel90, this thread isn't actually about analyzing cochlear implants and CI results. DD is asking questions about analyzing audiograms and hearing aid responses. DD posted some questions directed at me, some specific to Li-Li's audiogram.

I disagree with your comment that hearing people shouldn't "overanalyze" the decision to get a CI or not: for my daughter, I thought it was a very big decision that warranted a great deal of thought and analysis. But that's just me, the amount of thought you put into raising your child is not for me to judge. I do think it's just a bit odd for you to argue that parents are putting too much thought into decision-making around getting a CI.

U can disagree but seriously, there r some people I have met who have become so obsessed with CIs and how deaf people can hear or can't hear with them. My point is..don't let that consume your lives because I went thru it and it just ate me up and I lost who I was.

Nobody HAS to take my advice. No biggie. Just expressing how I feel. Thanks.