I just finished reading another CI blog and this woman's CI journey was a long and difficult one. I am linking you to her blog. Note that she hasn't updated her blog in almost two years and has no further news. Her blog <------ source
I am providing some excerpts from her blog to save you the time from reading every post. My comments below are shown. The purpose is not to warn you from CIs or decide for you, but only provide information to help you make an informed decision. Today's candidacy criteria is way too lax and there's way too much hype with CI. I am seperating the hype with realistic expectations of what CI can and can't do.
1. Between pressure disguised as “encouragement” from family members and others, and unrealistic overly optimistic expectations from them, I began to resent the implants and even psychologically reject them. I was so tired all the time, it was mentally and physically exhausting. I had enough to deal with, you know, like real life and stuff? I wanted to get on with using the blasted things effortlessly, I wanted to forget they were even there and just have my hearing as it was be a part of my life.
My comments: I have made this point before that there is way too much pressure and hype surrounding CIs. Many people, even family and friends of CI wearers believe the hype and thus their expectations are unrealistic.
2. Cochlear implants may solve a big problem, but they give you a lot more to solve in it’s place. I’m pretty sure that when someone says “Wow it’s so cool, YOU CAN HEAR!” I am not the only one that thinks “It’s not as great as you think it is. You’re so used to hearing so easily and effortlessly. For me, it’s work. It’s stress. It’s frustrating. It’s not like one day I went from being deaf to being just like you, it’s more like I went from something I knew and was comfortable with to something that I have to work at constantly while I watch everyone else around me get it so easy… just shut up. You don’t know what it’s like.”
My comments: The big problem CI solves is giving the deaf access to sounds and some speech. For over 90% of the profoundly deaf, they still have a measurable amount of residual hearing. Then it becomes a choice vs. HAs. I can't make that choice for you, I can only give you the facts, opinions, risks and numbers and you must decide.
3. And having implants of course causes expectations of those people in your life for you to be able to do things that despite how much hearing the implants have given you, you just. can’t. do. Like for me, hearing on the phone, and being able to comprehend without reading lips. It’s just not going to happen, and I am tired of it being expected to happen.
My comments: CI results vary. Some people hear just environmental sounds, others will understand a little speech. Still others will have decent hearing. A lucky few will hear as good as normally hearing people. Not everyone can understand speech with CIs.
4. It’s like they think that each appointment, each surgery, each little thing involved is going to be “THE CURE”. It’s going to make me hear! It’s going to solve all my problems! No it’s not. Why can’t they just be happy with the way things are? I am! As if all that wasn’t bad enough, whenever the results inevitably don’t measure up to their expectations, it’s always my fault somehow. I don’t do enough. I don’t practice enough. I don’t care enough. Oh no, the very idea that maybe I’m NOT going to hear as well as them is just not possible, it’s all my fault!
My comments: CIs are not a cure, they never were and never will be. Scientists are working on a cure that no one knows how far in the future itll become available. But there's no cure now nor will there be a cure in the next several years or longer. Your choice is HAs or take a chance with CIs. Be happy with whatever you decide.
5. What could have been a wonderful experience has been ruined by the invasion of those who think they they own stock in my bionic ears. Somehow it’s become all about THEM and what THEY want. THEY want me to talk on the phone and hear without lipreading. That’s all that seems to be important. Why? Since when did this become about them?
My comments: That also explains why 90% of deaf babies born to hearing parents have CIs forced on them. The parents explain that they aren't happy that their son or daughter is deaf. Maybe the kid doesn't mind being deaf? If the kid has any measurable residual hearing, get the most powerful HAs and max the gain(make sure this much gain doesn't cause any discomfort) and let the kid decide for himself when he's older or an adult. I had 100db HL at 1000Hz and up, yet I did great with HAs. I am 100% oral, speak clearly, read lips and understand some speech.
6. They had planned to declare the implant a failure anyway if it was still messing up after everything we tried (including all new external parts at one point), but finally at the last appointment before declaring it failure, it acted up while Dr. Wolfe had it connected to the computer and he finally saw what it was doing. I was very relieved, but at the same time it was bittersweet, because it was then confirmed that yes, the implant was in fact a failure and I would have to have surgery again to replace it. If you’ve read my accounts of my previous 2 cochlear implants surgeries, you know this was not good news to me by any means.
My comments: When a HA fails, it's easy and safe to replace. If a CI fails, it's difficult and risky to replace, requiring more surgery. She lost all residual hearing so she could not go back to HAs, something she wish was possible. Nowdays a lucky few retain most/all their residual hearing, making it a great plan B option.
7. But that pressure was nothing compared to the pressure I am experiencing with this new technology that the hearing world is misunderstanding as “the cure for deafness”, rather than what it really is which is a tool for attempting to mitigate deafness.
My comments: I see/hear it all the time now. CIs have been hyped so much that many people believe it to be a cure or at least something that restores perfect hearing. CIs are not a cure and very rarely give hearing equal to a hearing person. She does say it's a tool to give access to sounds which is correct.
8. Once in a rare while I will overhear people’s conversations and catch a word here and there. I still have moments where I am hearing something faint and I can’t figure out what it is, then once I do I am amazed, such as crickets singing outside at night or a bee buzzing around me.
My comments: CIs do work and they give her access to environmenal sounds and some speech.
9. This almost happened to me, I can only imagine what the poor kids are going through with their parents putting so much weight on their child’s ability to use their implants. At least I am aware of this effect and I can say “Back off!” but the children may not realize this and think all sorts of negative things such as it’s their fault or that there’s something wrong with them, that it’s just not gonna work, or even give up, and parents and therapists constantly pushing them just exacerbates the situation.
My comments: Ive mentioned it above, I will mention it again. Too much forcing, pressure, hype.
10. Everytime I want to listen to music, I get sad. I never realized just how much music really was a part of my life until I couldn’t enjoy it anymore. And it’s all because I willingly gave that ability away. Those who know me well say that I am much better off having implanted my “good ear” instead of continuing to use the hearing aid in that ear, but I’m not so sure anymore.
My comments: This is why it's usually a bad idea to implant the good ear. Implant the bad ear first! If going bilateral, think long and hard if you want to also risk the good ear or "save" it for future technology. Many people do great with one CI and one HA. Many people don't properly hear music after CI and her's is no surprise with only 12 electrodes. Read my earlier post to understand why.
11. It’s been about 2 and a half months since the left side was activated. I know that really isn’t long at all to adjust to an entire new way of hearing, but I was told I would adjust much faster due to having been able to hear with a hearing aid in that ear before. So far, I have been able to hear more stuff with it, but it still doesn’t sound very good. And ironically, my comprehension seems worse than with the hearing aid. I can no longer understand my loved ones without looking at them as I did with the hearing aid, and I can no longer talk on the phone. And the music… The music has ended for me.
My comments: Her CI in the worse ear ended up better than the HA in her better ear, yet a CI in the better ear was worse than the other CI or her HA. This just goes to show that results are a draw of luck. It also goes to show that having more residual hearing doesn't always give better results, in fact there's more to risk because HAs work much better with more residual hearing and when HAs work so well, they could be giving better hearing than CIs as she found out. I have made a post below explaining the math and that id need to get 24db threshold with CI just to match speech comphrension with male voices that I understand up to 80% with HAs. I also made a post of a profoundly deaf man who scores over 90% speech reception with HAs!
I am providing some excerpts from her blog to save you the time from reading every post. My comments below are shown. The purpose is not to warn you from CIs or decide for you, but only provide information to help you make an informed decision. Today's candidacy criteria is way too lax and there's way too much hype with CI. I am seperating the hype with realistic expectations of what CI can and can't do.
1. Between pressure disguised as “encouragement” from family members and others, and unrealistic overly optimistic expectations from them, I began to resent the implants and even psychologically reject them. I was so tired all the time, it was mentally and physically exhausting. I had enough to deal with, you know, like real life and stuff? I wanted to get on with using the blasted things effortlessly, I wanted to forget they were even there and just have my hearing as it was be a part of my life.
My comments: I have made this point before that there is way too much pressure and hype surrounding CIs. Many people, even family and friends of CI wearers believe the hype and thus their expectations are unrealistic.
2. Cochlear implants may solve a big problem, but they give you a lot more to solve in it’s place. I’m pretty sure that when someone says “Wow it’s so cool, YOU CAN HEAR!” I am not the only one that thinks “It’s not as great as you think it is. You’re so used to hearing so easily and effortlessly. For me, it’s work. It’s stress. It’s frustrating. It’s not like one day I went from being deaf to being just like you, it’s more like I went from something I knew and was comfortable with to something that I have to work at constantly while I watch everyone else around me get it so easy… just shut up. You don’t know what it’s like.”
My comments: The big problem CI solves is giving the deaf access to sounds and some speech. For over 90% of the profoundly deaf, they still have a measurable amount of residual hearing. Then it becomes a choice vs. HAs. I can't make that choice for you, I can only give you the facts, opinions, risks and numbers and you must decide.
3. And having implants of course causes expectations of those people in your life for you to be able to do things that despite how much hearing the implants have given you, you just. can’t. do. Like for me, hearing on the phone, and being able to comprehend without reading lips. It’s just not going to happen, and I am tired of it being expected to happen.
My comments: CI results vary. Some people hear just environmental sounds, others will understand a little speech. Still others will have decent hearing. A lucky few will hear as good as normally hearing people. Not everyone can understand speech with CIs.
4. It’s like they think that each appointment, each surgery, each little thing involved is going to be “THE CURE”. It’s going to make me hear! It’s going to solve all my problems! No it’s not. Why can’t they just be happy with the way things are? I am! As if all that wasn’t bad enough, whenever the results inevitably don’t measure up to their expectations, it’s always my fault somehow. I don’t do enough. I don’t practice enough. I don’t care enough. Oh no, the very idea that maybe I’m NOT going to hear as well as them is just not possible, it’s all my fault!
My comments: CIs are not a cure, they never were and never will be. Scientists are working on a cure that no one knows how far in the future itll become available. But there's no cure now nor will there be a cure in the next several years or longer. Your choice is HAs or take a chance with CIs. Be happy with whatever you decide.
5. What could have been a wonderful experience has been ruined by the invasion of those who think they they own stock in my bionic ears. Somehow it’s become all about THEM and what THEY want. THEY want me to talk on the phone and hear without lipreading. That’s all that seems to be important. Why? Since when did this become about them?
My comments: That also explains why 90% of deaf babies born to hearing parents have CIs forced on them. The parents explain that they aren't happy that their son or daughter is deaf. Maybe the kid doesn't mind being deaf? If the kid has any measurable residual hearing, get the most powerful HAs and max the gain(make sure this much gain doesn't cause any discomfort) and let the kid decide for himself when he's older or an adult. I had 100db HL at 1000Hz and up, yet I did great with HAs. I am 100% oral, speak clearly, read lips and understand some speech.
6. They had planned to declare the implant a failure anyway if it was still messing up after everything we tried (including all new external parts at one point), but finally at the last appointment before declaring it failure, it acted up while Dr. Wolfe had it connected to the computer and he finally saw what it was doing. I was very relieved, but at the same time it was bittersweet, because it was then confirmed that yes, the implant was in fact a failure and I would have to have surgery again to replace it. If you’ve read my accounts of my previous 2 cochlear implants surgeries, you know this was not good news to me by any means.
My comments: When a HA fails, it's easy and safe to replace. If a CI fails, it's difficult and risky to replace, requiring more surgery. She lost all residual hearing so she could not go back to HAs, something she wish was possible. Nowdays a lucky few retain most/all their residual hearing, making it a great plan B option.
7. But that pressure was nothing compared to the pressure I am experiencing with this new technology that the hearing world is misunderstanding as “the cure for deafness”, rather than what it really is which is a tool for attempting to mitigate deafness.
My comments: I see/hear it all the time now. CIs have been hyped so much that many people believe it to be a cure or at least something that restores perfect hearing. CIs are not a cure and very rarely give hearing equal to a hearing person. She does say it's a tool to give access to sounds which is correct.
8. Once in a rare while I will overhear people’s conversations and catch a word here and there. I still have moments where I am hearing something faint and I can’t figure out what it is, then once I do I am amazed, such as crickets singing outside at night or a bee buzzing around me.
My comments: CIs do work and they give her access to environmenal sounds and some speech.
9. This almost happened to me, I can only imagine what the poor kids are going through with their parents putting so much weight on their child’s ability to use their implants. At least I am aware of this effect and I can say “Back off!” but the children may not realize this and think all sorts of negative things such as it’s their fault or that there’s something wrong with them, that it’s just not gonna work, or even give up, and parents and therapists constantly pushing them just exacerbates the situation.
My comments: Ive mentioned it above, I will mention it again. Too much forcing, pressure, hype.
10. Everytime I want to listen to music, I get sad. I never realized just how much music really was a part of my life until I couldn’t enjoy it anymore. And it’s all because I willingly gave that ability away. Those who know me well say that I am much better off having implanted my “good ear” instead of continuing to use the hearing aid in that ear, but I’m not so sure anymore.
My comments: This is why it's usually a bad idea to implant the good ear. Implant the bad ear first! If going bilateral, think long and hard if you want to also risk the good ear or "save" it for future technology. Many people do great with one CI and one HA. Many people don't properly hear music after CI and her's is no surprise with only 12 electrodes. Read my earlier post to understand why.
11. It’s been about 2 and a half months since the left side was activated. I know that really isn’t long at all to adjust to an entire new way of hearing, but I was told I would adjust much faster due to having been able to hear with a hearing aid in that ear before. So far, I have been able to hear more stuff with it, but it still doesn’t sound very good. And ironically, my comprehension seems worse than with the hearing aid. I can no longer understand my loved ones without looking at them as I did with the hearing aid, and I can no longer talk on the phone. And the music… The music has ended for me.
My comments: Her CI in the worse ear ended up better than the HA in her better ear, yet a CI in the better ear was worse than the other CI or her HA. This just goes to show that results are a draw of luck. It also goes to show that having more residual hearing doesn't always give better results, in fact there's more to risk because HAs work much better with more residual hearing and when HAs work so well, they could be giving better hearing than CIs as she found out. I have made a post below explaining the math and that id need to get 24db threshold with CI just to match speech comphrension with male voices that I understand up to 80% with HAs. I also made a post of a profoundly deaf man who scores over 90% speech reception with HAs!
Lady.
