to cure or not to cure?

and I'm offended all over again. My mom is just so infuriating! She's hopeless when it comes to discussing options in regards to MY deafness. "You should consider ALL the options out there, not just one" Uh I have thank you very much, and it's still a NO on the hair cell thing. "You get that "being deaf has its perks" thing from Jo!" No I do not. I've discovered the "perks" ages ago. Jo just UNDERSTANDS where I come from and even agrees with me, whereas mom doesn't. Jo's been deaf all her life, so it's just a lot easier to talk to her about anything deaf, and with my mom it's just impossible. "I understand being hearing would be a lot to take in after years of deafness" uh exactly how would one who might have gone through the hair cell regeneration get a break from HEARING if they needed one? "See, with the implant like that lady on the HBO show, she took too many breaks and it didn't work for her!" Duh, not EVERYONE is going to be like her, everyone progress with the implants in their own way on their own time schedule. But breaks would still be necessary, to let the brain sort out what it just had to deal with. Thats it, I'm done discussing ANYTHING with mom about this garbage. All she does is just offend me (even though she doesn't mean to) and infuriate me, no matter what.

I even told her if there was absolutely no hope of having the left ear implanted, I would do the right ear "oh so you'd risk losing what hearing you have left?" Yes. If the implant can help me to hear better than the hearing aid, great. I'm perfectly aware of the risks. But with technology getting better, the losing whatever hearing is left risk is not as big as it used to be. I am willing to take that chance. "What if the implant doesn't work?" so be it. I'll deal with it. It'll be tough but I'll deal with it. Even the CI audie in Denver said there's a really good chance of the implant working for the right ear (not so sure of the left ear, when we did the hearing test it was absolutely 0 responses.. could be cause of ossification, who knows). I'd rather take the audie's word over my mom's on chances of it working. Something could always come up and something could go wrong, but I'm still willing to take that risk.

Mom says she has accepted my deafness and loves me for who i am and all that stuff, but it's just difficult when she points out all the stuff that I have already considered. What does she think I am, dumb? I've done my research, for YEARS. I've talked with various CI users, in person and online. I've questioned the CI audie in Denver from time to time to get answers. I've been doing all this since I was in high school when I first started exploring the cochlear implant option.
 
When we were looking into the ci for our daughter in 88/89 there was a lot of talk about hair cell regeration then too. I do not think they are any closer 20 years later
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Agreed! I know over on spinal injuiry sites, they say that back 20/30 years ago they said that spinal cord repairs were just around the corner...they are STILL hyping it now.
 
I personally wouldn't care if I get that done or not in view of hearing or being deaf. However, I probably would opt for it cause I want to hear music as it's supposed to be heard! I love music.
 
I've always wondered what it would be like if I were to wake up one day hearing. (Of course, that's not happening, it's just a "what if".) Since I've never been hearing I can't know what it's like to hear things I've never heard before, but 1) it might be really cool to hear all sorts of things like my cats meowing or raining outside, etc., HOWEVER, 2) I love it that I can have total peace and quiet if I choose. I often go without my HAs on the weekends and totally enjoy the peace and quiet. And I would miss that option if I did the hair cell regeneration. So it would have to be a compromise.
 
Your mom should talk to me if she wants someone thatll agree with her. I respect your choice, after all, I am also profoundly deaf so I understand somewhat. I for one want a cure. However I respect those who wish to remain deaf, in that case why would they even be interested in a CI?

A CI has been mentioned to me from time to time but im risk adverse and the $50,000 cost, surgery and probably losing all my natural hearing doesn't appeal to me. How much residual hearing do you have per your audiogram at all frequencies tested?

I understand how silence can be bliss and am not worried about a cure taking that away from me. From what I read, a cure will first be tested on humans around 2020 and they are expecting a 10-20db improvement among severe-profound hearing loss initially. I might not even see a 100% cure thatll restore hearing down to 0db in my lifetime and don't care.

Getting my hearing down from profound to mild will be perfect and I probably will never need hearing aids, yet sounds won't be so loud and annoying and ill be able to sleep at night without earplugs.

I believe that any partial cure will quickly make CIs obsolete as even a modest improvement will restore enough hearing that hearing aids work wonderfully. Youd be surprised how powerful todays hearing aids are.
 
A few words/comments

I have a few questions for the original poster.

Is your mom deaf? I don't think you posted that.

Do you have deaf friends/other family members?

Do you personally WANT to be hearing or is there any outside influence?

You need to ask yourself if this would be right for you. Cochlear Implant are undoubtedly the biggest revolution in the Deaf Community (I don't like using "Deaf World" since that makes me feel like I'm drastically isolating people that are deaf). It had taken many years for people to become accustomed to hearing aids and eventually accept them. If Cochlear Implants came about 40 or so years ago, I don't believe the common hearing aid would even be used. People would be able to accept the Cochlear Implant.

My opinion: Simple words-I AM NOT IN FAVOR OF THEM. I never have been and never will be. Cochlear Implants are way to "robotic" for me. I would never have dreamed that on my son. My wife had originally wanted it. We went and did everything necessary to see both sides (good and bad). In my opinion, the Bad outweighed the good. People woke up with paralysis (rare) or they just never adjusted so you had the surgery done for nothing. Many people used them for a few years and they got old, so they stopped the use! A student I worked with, at a local school (I interpret for the school district), has attempted 3 Cochlear Implants. One while he was 1 1/2 years old, one when he was 5, and one while he was 14. None of these have been successful. He has given up and he has always been fluent in American Sign Language. When he tried the Implant, the parents did everything possible to help...but it still didn't help.

What's wrong with being profoundly, permanently deaf? Have a Cochlear Implant is NOT the best of both worlds, like some claim. Generally, your doctor who does the procedure is extremely against Deaf Culture, the language, and the rituals. Therefore they ask for total verbal communication. I compare Cochlear Implants to oralism.

I'm sorry if this is opinionated. Didn't intend to be that much opinionated.
 
In a way, I do want to hear. If the implant will help me to hear better than I currently can with the hearing aid, great. But I also like being deaf at times too. And no, my mom is not deaf. I'm the only deaf one, all because of meningitis. At least, with the implant, I can turn it off and be deaf when I need to.

Extremely profound loss in the left ear, every time left ear is tested, no response EVERY time for every frequency. Right ear, I have some hearing, but speech recognition has gone down in the last few years. Even powerful hearing aids haven't made much of a difference (have tried Phonak's Naida, and I didn't see any increased benefits with it).

I'm still hoping it may be possible to do the left ear (and leave my right ear alone)... but the implant will probably work better in the right ear, since that ear has had a hearing aid on it since 1988 and I can hear sounds. Left ear, completely absolutely NOTHING whatsoever.

I'm very well aware there are risks with the implant, and that it may not even work. But, techniques is constantly being improved over time. They are able to implant those with ossified cochleas, and risk of losing residual hearing is getting smaller, the incisions are smaller too even.

Everyone's going to have their own thoughts and opinions on the implant issue, and I respect that. I'm going to do what I feel is right for me.
 
I think having a CI does give a deaf child or adult the best of both worlds. If we are talking about a child, they can choose to hear with their CI or refuse to use it later in life and participate in the Deaf Community. Even if they continue to use their CI on a regular basis, there's nothing stopping them from being a part of the Deaf Community. I was introduced to my local Deaf and Deafblind Community in 1995 and even though I have bilateral CIs, I'm still a member and do not intend to leave just because I have implants. Aside from that, I still use PSE and ASL when background noise is an issue, so I haven't abandoned sign either.
 
I'm sorry but I've only read the first couple of comments so if I'm redundant.....why not string your Mom along with the cell regeneration because I think its reality is probably at least 25 years into the future. :lol:

I'm sorry for what you're going through.
 
How old were you when you became deaf, may I ask?

Have you tried one before...based on your original post, you did...but I'm not sure.

Also, do you have signed language? What kind (ASL? SEE? Other?).

cdmeggers said:
In a way, I do want to hear. If the implant will help me to hear better than I currently can with the hearing aid, great. But I also like being deaf at times too. And no, my mom is not deaf. I'm the only deaf one, all because of meningitis. At least, with the implant, I can turn it off and be deaf when I need to.

Extremely profound loss in the left ear, every time left ear is tested, no response EVERY time for every frequency. Right ear, I have some hearing, but speech recognition has gone down in the last few years. Even powerful hearing aids haven't made much of a difference (have tried Phonak's Naida, and I didn't see any increased benefits with it).

I'm still hoping it may be possible to do the left ear (and leave my right ear alone)... but the implant will probably work better in the right ear, since that ear has had a hearing aid on it since 1988 and I can hear sounds. Left ear, completely absolutely NOTHING whatsoever.

I'm very well aware there are risks with the implant, and that it may not even work. But, techniques is constantly being improved over time. They are able to implant those with ossified cochleas, and risk of losing residual hearing is getting smaller, the incisions are smaller too even.

Everyone's going to have their own thoughts and opinions on the implant issue, and I respect that. I'm going to do what I feel is right for me.
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cdmeggers said:
In a way, I do want to hear. If the implant will help me to hear better than I currently can with the hearing aid, great. But I also like being deaf at times too. And no, my mom is not deaf. I'm the only deaf one, all because of meningitis. At least, with the implant, I can turn it off and be deaf when I need to.

Extremely profound loss in the left ear, every time left ear is tested, no response EVERY time for every frequency. Right ear, I have some hearing, but speech recognition has gone down in the last few years. Even powerful hearing aids haven't made much of a difference (have tried Phonak's Naida, and I didn't see any increased benefits with it).

I'm still hoping it may be possible to do the left ear (and leave my right ear alone)... but the implant will probably work better in the right ear, since that ear has had a hearing aid on it since 1988 and I can hear sounds. Left ear, completely absolutely NOTHING whatsoever.

I'm very well aware there are risks with the implant, and that it may not even work. But, techniques is constantly being improved over time. They are able to implant those with ossified cochleas, and risk of losing residual hearing is getting smaller, the incisions are smaller too even.

Everyone's going to have their own thoughts and opinions on the implant issue, and I respect that. I'm going to do what I feel is right for me.
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Hi, have you read my reply above? See if you can find your audiogram of your good ear and let us know how many db HL you have for each frequency. Also if listed, what's your aided hearing tresholds? I am intrigued why you didn't notice a difference with the best hearing aids, were they programmed to max gain?

I am not talking you out of an implant, just curious about your thoughts and opinions. In my last post, I mentioned that a "cure" would improve profound HL to the point that HA's work great. But youd still hear almost nothing unaided so youd still enjoy the silence and peace, yet hear so much better with HA's.

Do you yet know if youll be a candidate for CIs and how much, if any of the $50,000 cost your insurance will cover? What are your expectations and do you believe itll be better than what you currently hear with HA's?
 
Even if i had a chance of regenration i would not have it, im happier enough being deaf, iv been deaf for practically 19 years
 
I am already a candidate for the implant, I'm just waiting to hear back from an insurance person who is researching coverage plans for me. And it would cost me more than $50,000.. more like $100,000, but again, insurance guy is still researching, and I am also working on other funding solutions.

My audie adjusted the Naida hearing aid several times, and no extra benefits, no matter what. Was more frustrating than anything else.

I learned signed english at the deaf school, started learning some ASL in 8th grade, and right now I'm use more PSE when I sign. But I don't sign much since I'm not around deaf people very often, so mainly I use my voice to communicate (and REALLY depend on visual support to make sense of anything that is being said, as in lip-reading or reading text, or signs/gestures). I can't "hear" when I can't see what is being said, and I can't read lips without sound.

Nick, tried what? And I was 2 (26 months) when I became deaf. that's 21 years of being deaf for me.

the hair cell regeneration wouldn't even be available for YEARS, and I'm not going to wait so long for it to become available when there is technology out there now that could benefit me.


dbhl aided unaided
250 - 75 - 95
500 - 60 - 90
750 - 40 - ??
1000 - 40 - 80
2000 - 35 - 85
3000 - 45 - 80
4000 - 60 - 85
6000 - 85 - 100

speech recognition, 45% with right ear aided


I am hoping the implant would be of more benefit for me than the hearing aid right now, and the CI audie said she thinks I could really benefit with the CI in right ear too. I've had other friends even say they think I could benefit from the implant as well (and they work with deaf students in the schools, etc., and have worked with me when I was their student for many years). I do think a CI will make enough of a difference for me.

I know my hearing has dropped somewhat since 2001. I got Phonak's Claro digital hearing aid Jan. 2001, and did well with it. But over time, my audie kept turning up the volume, and it eventually was completely maxed out we couldn't do more. With my current one (the Supero), the volume is perfect for now and has been boosted up 2-3 times since I got it in May 2004 (when I put Claro back on, it's too quiet). From time to time, I'll have audie change some things with the Supero (like bass, etc.) if I feel I need it. But even with all the changes he's made in the last 2-3 years, they only made a tiny tiny bit of a difference with speech recognition, but not much.
 
deafdude1 said:
Hi, have you read my reply above? See if you can find your audiogram of your good ear and let us know how many db HL you have for each frequency. Also if listed, what's your aided hearing tresholds?
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No two people with identical audiograms hear the same. Even if cdmeggars' audiogram showed better dBs and aided thresholds than mine, it still doesn't mean that she hears better than I do. The audi who fitted me with my first pair of hearing aids told me that when she saw me right before I received my initial CI that I functioned very well (i.e. I used my residual hearing to the maximum extent possible by using DAI and a Comtek FM system to hear my voice better as well as environmental sounds) despite having profound hearing loss in my left ear and severe-profound hearing loss in my right ear. In case you're wondering, my aided thresholds started at 60 dB and dropped to NR at 1000 Hz and above. The same is true for my residual hearing. My left ear started at 95 dB, but by 1000 Hz and above, there was no measurable hearing aided or unaided. My right ear was identical to that with the exception of 250 Hz starting at 90 dB. My first hearing aid audi told me that some people with moderate loss have a more difficult time understanding speech than those with severe loss. So much depends on how well a person has learned to use their hearing, how well they can interpret what they hear with aids and whether or not they have a decent amount of residual hearing to begin with. By the way, I know you were asking cdmeggars these questions for curiosity's sake, but I just thought I'd politely point out that it's difficult to make a judgement on how effective a CI will be for someone simply based on the degree of their hearing loss and/or aided thresholds. Just thought I'd mention this for the benefit of other readers. :)
 
cdmeggars,

I hope you are able to receive a CI if that's what you want. Good luck! :)
 
cdmeggers, Thanks for your time and reply. There is much I can learn. $100,000? Is that for one or two CIs? I always thought the cost was around $50k per ear and that includes everything. Still extremely expensive, especially if the insurance doesn't cover a significent percentage of the costs.
Was your Naida a V UP model like the one I wear and works great for me? Why was there no additional benefits? :hmm:

As for hair cell regeneration, those who don't urgently need a CI may be willing to wait around a decade. If you need to hear better now, yes there is technology out there. I have the best and strongest HA's and am surprised how well they work for me at frequencies up to 1000Hz despite a 110db loss at 1000Hz. Is this typical or unusual? I think I could be hearing 30db aided at that frequency, but ill get tested to make it official. The specs do say that my HAs can give a gain of just over 80db at 1000Hz so it makes sense.

I am curious why your current Supero HA's give so little gain? Do you have problems with recruitment that forces your audie to keep the gain down? Do you have any irregularities or anormalities in your ear, auditory nerve or cochlea that could logically explain the poor aided score in relation to unaided hearing? Is it a bad fitting mold, something I believe would have been solved by now?

My hearing is much worse than yours in all frequencies above 500Hz. You have a reverse cookie bite audiogram while I have a sloping audiogram that levels off at 110db. If my hearing gets worse, ill have a corner audiogram, about the worst possible audiogram type. My aided hearing is drastically better than yours in the low frequencies, including 500Hz where we both have the same 90db loss. If you don't already know, my audie can help you find out why you are hearing so poorly despite having less than a profound 90db loss for many frequencies.

He said if my hearing loss was a little less than 120db at 4KHz, I would hear near normal with those new HAs and have great speech recognition. But unfortunately my high frequency loss is a little higher than the maximum SPL of any hearing aid and thus nothing can be done. But in your case, your HL should be well below the max SPL of todays HA's.

Would you avoid a CI if you could get more benefits from a different HA or a different audie could program your HAs for max benefit? As I previously mentioned, it is very curious why you get so little benefit from any HA despite having significent residual hearing, even at high frequencies. If it isn't a recruitment problem, what could it be? Even with recruitment, couldn't the volume be adjusted by you depending on how noisy your setting is? :hmm:

My hearing was much worse than yours, and I remember back in 1998 my aided score started at 30db at 250Hz and ended at 55db at 6KHz. I had 105db HL from 1KHz to 6KHz flat audiogram. My hearing in the low frequencies has not changed, but it got worse in the high frequencies, today I can no longer hear high frequencies.

Hear Again,

I always thought that two identical or very similiar unaided audiograms should likewise have equivalent aided audiograms. I do agree speech perception can vary depending on training. My audie says any HA that gives significently less gain than listed in the specs is junk. If a HA claims a max gain of 65db at 1000Hz, my audie says you then should be getting close to that! Your hearing was bad enough to make you a CI candidate, especially if your aided tresholds were no better than 60db.

Is an aided score of say 40db with HAs and 40db with CIs supposed to be essentally identical? I have lurked on this and other forums and see CI insurances and sometimes even surgeons turn down people due to too much residual unaided hearing. Usually, those with less than 90db HL at 250Hz are told to upgrade to the strongest HA's out there. I have read posts by people with 90-110db HL get by quite well with high end HA's and their aided scores are as good as the CI scores of others.

Those people say they don't want a CI at this time unless their hearing gets worse or CI technology improves where it gives better hearing than what they get with their latest HA's. From what I read, there is alot of potental with CI, I read about fiber optics and lasers as being the next revolution for CI, also the reciever can be implanted(of course you can have both and activate one at a time) while HA technology has probably been maxed out, you just can't help when there's no residual(greater than 120db HL) hearing left. No hearing aid can have a SPL much above 120db.
 
deafdude,

You may not know this, but I'm totally deafblind which is a large part of the reason why I elected to get a CI. I can't lipread and therefore must rely on other alternative techniques such as tactile sign (PSE, SEE and ASL), print on palm/POP (tracing block letters into the palm of the hand), Braille/raised print alphabet card, TeleBraille/Braille TTY and fingerbraille (using the first 3 fingers on each hand to type out Braille characters). In terms of my speech discrimination with the strongest hearing aids in conjunction with a Comtek FM system using DAI, my percentage for my left ear was 8% and my right ear 22%.

It is true that no 2 people with the same audiogram hear exactly the same. If 2 people have moderate hearing loss, one person may be able to hear male voices better than female while the other person may have an easier time hearing female voices as opposed to male voices.

dB frequencies across the audiogram may also differ. For example, 2 people could have severe-profound hearing loss. Person A's loss may start at 70 dB and drop to 90 dB in the high frequencies. Conversely, person B's loss could start at 80 dB and drop to 110 dB in the high frequencies. With this being the case, it's safe to assume that person A would struggle a little less with speech understanding than person B given the fact that their dB levels are 10-20 dB less.

In terms of comparing aided scores with hearing aids vs. CIs, the difference can be remarkable. Hearing aids amplify sound. CIs do not. Therefore, hearing aids do not account for a person's inability to clearly understand speech. CIs, on the other hand, provide that clarity since they bypass the middle ear and stimulate the auditory nerve.

Does that help answer your questions? :)
 
The price for the implants varies by centers. Through Rocky Mountain Ear Center in Englewood, CO., their approximate total cost is $100,000, and that's just for one implant.

I did hold off on the implant to try the Naida, thinking the Naida would make a huge difference for me. But it didn't. And I know people who have worse hearing losses than I do and do better with their hearing aids, and I know people who have less hearing losses than I do (mine's worse than theirs), and they do horrible with their hearing aids. Everyone is different in terms of how well they use their hearing aids.

I used to hear fairly well enough to be able to use the phone and such when I was a kid.. But by the time I got to high school, I started having more difficulties with phones. NOw, I almost never use the phone (unless it's my mom or stepdad on the phone, and even then, I have to GUESS at what they're saying or have them repeat a few times). My audiologist can make whatever adjustments he wants to the hearing aids, and I'll give the programmings a try for a while, and oftentimes doesn't make much of a difference. I don't think messing with gains and thresholds and bass levels will do much for me. Speech would still sound more like gibberish (unless I SEE what is being said and can make the connections). There's still plenty more room for gains on the Supero right now, and I don't remember there being a difference in max gains between the Supero and the Naidas when I researched it last year. Either way, I still feel the implant is my best choice at this time, and will pursue it whenever I get the insurance coverage or funding.

and Hear_Again, thanks for your support. :)
 
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