DeafDyke: I am a cynic and a good one (pat pat) because I'm very right about so many issues beyond this forum. It's not about having an inflated ego because I don't. Since two of the three approved companies are publicly held, dividends have to be produced for stockholders. This tends to stifle innovation, increase layoffs (so it looks like the companies have more money), and increases the dividends paid on stock. I agree with all your conclusions.
Stressed out over CI
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BleedingPurist
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DeafDyke, this thread is about someone seeking help in response to their struggle with their CI. Notice that every actual CI user posting in response to this thread is pretty much saying exactly the same thing with the same encouragement. This is because we've all been there and recognize her description of her experience. It has nothing to do with PR. It is how other users support each other. It's about users understanding what is possible vs declaring they've already reached maximum potential. I've seen so many in both the OP and NYNY's place move forward and discover there was much more by solving various issues because they were lead in the right direction. It isn't about perfection, it's about ensuring that individual potential is maximized and pinpointing any possible issues that could be corrected. Nobody is telling anyone to do something beyond their capabilities.
I've seen the MAJORITY of posts acknowledge that there's varied benefit from CI.....but there is still a certain poster who acts like if you're not getting optimum benefit, it's an automatic slur on him. NOBODY KNOWS why some people significantly benefit from CI (ie "almost hearing, very HOH level of functioning) vs a more varied level of functioning.....By saying that there's a varied level of functioning, it's just being straightforward...it's not being "anti CI"... Nobody for example would get upset at the fact that HAs vary with effectiveness, or get mad at people who say that HAs effectiveness varies hugely... So why are some people so sensitive about that fact with CIs?
BleedingPurist
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Deafdyke, you are incorrect. There are many variables that can affect response to and performance with a CI that are predictable. It's science, not mysterious magic. They also tend to be predictable with hearing aids. Again, science.
There are two people in this thread struggling with their CI for different reasons. One is new and the other is further along with a multitude of issues involved. Neither have reached maximum individual potential. Rehabbing a CI ear after activation is exactly like rehabbing a limb or learning to walk again.
I loathe the propagation of misinformation, so yes, I'm going to be disgusted when someone is asking for help with their newly activated ear gets responses from misinformed and misguided members that do not address their plight. Where is this acknowledgement of variability you speak of that actually comes from CI users? I see non-CI users proposing that it doesn't work very well. I see CI users who don't get maximum benefit declaring their experience is the CI experience. What you repeatedly fail to understand is it's not about me or CIs, it's about the individual you think you are helping. You do the equivalent of coming along the sidelines while they are in the middle of doing their rehab with their Physical Therapist and you begin to shout, "Not everyone learns to walk again so it's ok if you don't want to do this work anymore. Oh, nevermind the broken hinge on your prosthetic leg, it's just variability of user performance." You are damn right I get pissed. Not for me, but for them.
BleedingPurist: The science in the implants is not exact. Until it is, it will change (“facts change” became my mantra in my last year of college). That’s why the work, research programs, and continuing updates to correct errors with them. And, they have a product to sell at a heck of an expense that drives it all. First and foremost, the CI companies are a business. They help some and don’t help others.
I trust you have a reasonable knowledge of implants but it doesn’t apply to all of us. It can’t. You made an assumption the problems I’m having were due to a bad doctor. That’s wrong. I know a bad ENT CI doctor (he lied in his evaluation) who I interviewed and I didn’t go to him or the hospital.
My guess is you watched the CI evolution as I did. I went to a research program where I had my implant. 9 electrodes were turned off (because it’s not an exact science). I did as told and went back some weeks later. My scores went up but my real-life comprehension dropped. In time, I asked the implant to have everything reset. There were too many issues with what had been done. There are too many issues from what was initially done.
I’ve also long ago reached a point where I loathed the misinformation (on purpose and not), the lies, the distortions of reality in an effort to keep us in the dark, and false data results. I was deceived and I keep plugging away looking for a resolution to this thing. Those who know me and how obsessive I get researching, asked how could this happen when “we” spent so much time (months condensed after possible CI approval and time watching implants evolve). That’s covered in the first sentence. Last in this paragraph is just mentioning ethanol in gas. It’s an invented reality to the public but after many years, people are finally learning about it and the harm it does (and the money it makes for oil companies).
Hearing aids are a different beast and not a fair comparison (I don’t think). They’re not implanted in our brain and a side-effect of a HA isn’t tinnitus. Add the total complexity of our different: brains, ears, comprehension level, deaf or Deaf (the list goes on) and I fully expect to see different results with and without commonality in those results.
I was a non-CI user and was concerned about the surgery for good reasons. Then I became a CI-user and feel quite screwed. I will reiterate that I am not one to take a life-changing event lightly. The results of the inexact science and the false propagation of xxx make me want to scream. So, we’re alike there.
So, CIs have a “predicted result.” It’s like turning on my iron and turning it to cotton will create a hot iron (most of the time). When you apply a CI (or an iron) to one’s brain, there isn’t a consistent result because of all those variables we both mention. Have I reached the maximum potential of the CI? Possibly and it's an unknown according to what you said - two years. What I do know that I've said is the robotic processed sound drives me up the wall. The tinnitus isn't going anywhere except continuing to worsen. And CIs do work for others. We'll never know the failure/success rates because it's controlled by what companies choose to report.
If you need to be mad be mad. I prefer your guidance and suggestions from an experienced layperson.
BleedingPurist
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You have written a thoughtful post that more or less says the same thing from a different perspective. I do have to say that I did not assume the problems are due to a bad doctor. I don't know that information.
I should clarify, as well as not use the word "predictable," when talking about acknowledging the complications that will prevent someone from using the full capacity of their implant. In your case, it's not surprising you are having issues when you have to deal with constant tinnitus as just one of the complications. CI's are definitely not an exact science. An example is one of our members is similarly not getting full benefit from her implant due to the ossification of her cochlea. While it couldn't be predicted in advance what her result would be, it is also not surprising her condition interferes with it.
My severe tinnitus died out a couple of weeks after surgery. I should mention that I actually did suffer from tinnitus caused by the use of my last hearing aid. Hearing Aids do have a tendency to blast out our remaining hair cells due and tinnitus is often a symptom of that. I also experienced continued tinnitus during my rehab period as a reaction to nerve fatigue that faded as my hearing strength increased. I wonder if you are experiencing the same thing, but for a much longer duration. My CI ear was my hearing aid ear, so it had been put to work all the way up to the surgery. It was the high frequencies that got the tinnitus going. It's my hope that yours is a similar, but more severe condition that will fade with continued rehab.
Oh really? Then how come one kid with one audiogram can benefit more from a HA, and another one with the EXACT SAME audiogram might need to opt for CIs? It is a FACT that performance with HAs and CIs is VERY individual....Ask any audi.
AlleyCat
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Because everyone is different. That should've gone without saying. Being raised with or without HAs, with or without lip reading, or with or without role models such as parents or family or support groups who will work with you to continually rehab with a CI, etc. There are many factors into what makes a HA work better for some, and a CI better for others, even with the same audiogram. Yes, it is very individual as you wrote, but the reason behind it should be obvious and different for everyone.
I have to agree with the last sentence. I attribute my struggles to a lack of any true rehab program for a CI user. I understand rehab as many high school football related injuries let me into surgeries an rehab programs. While those programs only lasted 6-8 weeks they were very structured and directed ad helping you to adapt or relearn how to function after the injury.
I was quite surprised to learn through my CI research that there really isn't structured rehab program for someone like me who goes from a "hearing" world to a "non-hearing" world as an adult. You do your mappings and "practice". Well, what the hell is practice and what material should I use to practice?
IMHO, "rehab" isn't the audiologist telling you to use the manufacturing sites, or some internet webpage. While there are tools out there, are they the best way to rehab? Who defined those exercises? What merit is there? How does the audiologist evaluate your progress? How can the audiologist and YOURSELF be held accountable? So to me, there really is not any "rehab" program that is administered by the CI team to help you progress after activation.
I was recently at an event for CI users where the presenter talked about this very issue, and how he strongly felt that a structured program needs to be developed for people to have a chance at reaching their full potential with a CI. A program that was based on research that supported and defined the rehab exercises, curriculum and progress. I completely agreed.
While variables of all sorts play a role, right now rehab from a CI (in my situation) is really dependent on the individual to figure it out rather than any medically defined rehab program. I find this to be the biggest disappointment as I travel through this venture.
It's such a sad observation to see the technology of a CI fail to reach it's potential because there does not seem to be any true medically-directed rehabilitation program after CI surgery.
Another combination thread to folks. Saves on the number of postings.
Kurenai: You began this thread and you may be getting tired of the massive amount of information here. I’m sorry if it’s an issue. Try Meetup for local groups. I would suggest (I feel BleedingPurist saying the same thing) you need to wear the nasty implant or you’re never going to know if it’s going to work for you. Your brain has the ability to try to adapt by having the dendrites fire to new synapses being forged by the rerouting of how you hear. It may drive you batty for a bit, turn down the volume J .
BleedingPurist: Yes, I said things that some folks have said already. But I hadn’t said anything about ethanol J. I appreciate your response and will need it again when I take a photo of the implant. Since the tinnitus was likely started with otosclerosis (makes sense and I found this in the last week but had considered the possibility pre-implant) and, I believe, compounded by the implant, I hold no illusion that this will go away. I stay away from a four-letter word called, “hope,” because it’s not scientific. I had no expectations due to the inexact nature of the beasty implant. For me, that was my only saving grace.
I’ve never heard of tinnitus caused by HAs or read that anywhere. I flip into the concept that perhaps the HA companies (there are so many now) would not want that information publicized. You’re pushing loud sounds into your head and watching aging rockers admitting what it did to their lack of hearing. I know “kids” now adults who attended one too many rock concerts that rattled their world with a loss (rather than tinnitus). The problem is at 1.5 years of the CI and increased tinnitus not only reported by me but too many people here and it’s amazing how many long-term CI users are reporting it. You are the first person who said it went away after a while (I read your details). I have no doubt you experienced it.
Deafdyke: Yep. That’s one thing we can separate in alldeaf . A HA and a CI are the apples and oranges example. The comparisons of their results should be kept separate. Questioning the two is one thing but comparing them is totally and I believe erroneous way to go.
AlleyCat: You’re expanding the list of what can cause different results from a CI. If I could wear a powerblaster HA, I would. But I, too, have variables that made this impossible.
Paullys50: I thought I was up a creek with useless websites from the CI audiologist (then I asked an AB rep for a pointer and couldn’t get anything) that were not compatible with my computer. While HOH-ME jumped in and referred me to an AB site that works with my operating system, isn’t it ridiculous that HOH-ME had better information than either AB or my audiologist. I had to figure some things out for myself. I played known songs with the words (and did it repeatedly) but it didn’t help. This really stresses too many chess pieces of the CI world appear to not care if your results are positive or not and for better or worse. They appear to care about doing surgery. I think what happened to you is nuts. I went through similar things but on a smaller scale.
You make a statement that has immense implications. I read a less-impact statement by someone else when we were talking about the psychological evals.
There was no consistency in what I read. But that wasn’t (I’m making an assssumption) the goal of the testing. The goal was very likely just to get me into surgery. Just remember that your end result may be positive. The problem is you may not know for months or years. BleedingPurist said some people have immediate and positive results. I’m not sure how that can happen but I will not discount it’s in the realm of possibilites.
· To those planning on CI surgery, based on the massive lessons-learned posted by so many on ALLDEAF, we’re all consistently saying the end result may be/should be different from patient to patient. Many of us are bringing our true reality to you. Patience is a virtue and mandatory when considering a drastic move to get a CI. I think a checklist is in order (I had one – had to because I was comparing doctors, hospitals, and how the audiology dept. is run), including asking what kind of rehab program is available. If the doctor or audiologist fumbles through this, make it a priority or go find someone who has an inkling as to what to do.
Last word of caution. When you read websites about a CI or a story site that has users posting their experience, it would behoove you to find out who controls it. If it is a CI company but comforts you, stay there. But you must know that any company-owned website will likely be more than biased and misleading. Hence my reasoning for coming here for answers. No one is making any profit from stating our experience. The CI-owned websites have a lot of money at stake and they will want positive stories not anything negative.
Take care to all of you and good luck.
Kurenai: You began this thread and you may be getting tired of the massive amount of information here. I’m sorry if it’s an issue. Try Meetup for local groups. I would suggest (I feel BleedingPurist saying the same thing) you need to wear the nasty implant or you’re never going to know if it’s going to work for you. Your brain has the ability to try to adapt by having the dendrites fire to new synapses being forged by the rerouting of how you hear. It may drive you batty for a bit, turn down the volume J .
BleedingPurist: Yes, I said things that some folks have said already. But I hadn’t said anything about ethanol J. I appreciate your response and will need it again when I take a photo of the implant. Since the tinnitus was likely started with otosclerosis (makes sense and I found this in the last week but had considered the possibility pre-implant) and, I believe, compounded by the implant, I hold no illusion that this will go away. I stay away from a four-letter word called, “hope,” because it’s not scientific. I had no expectations due to the inexact nature of the beasty implant. For me, that was my only saving grace.
I’ve never heard of tinnitus caused by HAs or read that anywhere. I flip into the concept that perhaps the HA companies (there are so many now) would not want that information publicized. You’re pushing loud sounds into your head and watching aging rockers admitting what it did to their lack of hearing. I know “kids” now adults who attended one too many rock concerts that rattled their world with a loss (rather than tinnitus). The problem is at 1.5 years of the CI and increased tinnitus not only reported by me but too many people here and it’s amazing how many long-term CI users are reporting it. You are the first person who said it went away after a while (I read your details). I have no doubt you experienced it.
Deafdyke: Yep. That’s one thing we can separate in alldeaf . A HA and a CI are the apples and oranges example. The comparisons of their results should be kept separate. Questioning the two is one thing but comparing them is totally and I believe erroneous way to go.
AlleyCat: You’re expanding the list of what can cause different results from a CI. If I could wear a powerblaster HA, I would. But I, too, have variables that made this impossible.
Paullys50: I thought I was up a creek with useless websites from the CI audiologist (then I asked an AB rep for a pointer and couldn’t get anything) that were not compatible with my computer. While HOH-ME jumped in and referred me to an AB site that works with my operating system, isn’t it ridiculous that HOH-ME had better information than either AB or my audiologist. I had to figure some things out for myself. I played known songs with the words (and did it repeatedly) but it didn’t help. This really stresses too many chess pieces of the CI world appear to not care if your results are positive or not and for better or worse. They appear to care about doing surgery. I think what happened to you is nuts. I went through similar things but on a smaller scale.
You make a statement that has immense implications. I read a less-impact statement by someone else when we were talking about the psychological evals.
There was no consistency in what I read. But that wasn’t (I’m making an assssumption) the goal of the testing. The goal was very likely just to get me into surgery. Just remember that your end result may be positive. The problem is you may not know for months or years. BleedingPurist said some people have immediate and positive results. I’m not sure how that can happen but I will not discount it’s in the realm of possibilites.
· To those planning on CI surgery, based on the massive lessons-learned posted by so many on ALLDEAF, we’re all consistently saying the end result may be/should be different from patient to patient. Many of us are bringing our true reality to you. Patience is a virtue and mandatory when considering a drastic move to get a CI. I think a checklist is in order (I had one – had to because I was comparing doctors, hospitals, and how the audiology dept. is run), including asking what kind of rehab program is available. If the doctor or audiologist fumbles through this, make it a priority or go find someone who has an inkling as to what to do.
Last word of caution. When you read websites about a CI or a story site that has users posting their experience, it would behoove you to find out who controls it. If it is a CI company but comforts you, stay there. But you must know that any company-owned website will likely be more than biased and misleading. Hence my reasoning for coming here for answers. No one is making any profit from stating our experience. The CI-owned websites have a lot of money at stake and they will want positive stories not anything negative.
Take care to all of you and good luck.
BleedingPurist
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Because one kid likely had more hearing initially than the other kid ever did, even if they are now similar. There were plenty of Deaf kids that I met who had similar audiograms to mine, but no sound discrimination or speaking skills because they had always been deaf. The simple fact they may not have been wearing a hearing aid for as long also plays a role in any differences. This also applies to CIs. It's an example of an expected complication.
In all of your posts I've only ever seen you make the same statement over and over without ever looking at the facts behind the differences that explain the variability. You're a fan of making sweeping, generalized statements without any supporting facts or details.
AlleyCat
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That was exactly my point. Why I included the "etc." There are too many variables that make HAs work for some and not for other, and vice versa for CIs. I refuse to endorse either option because it really varies for everyone. I dislike posters who are gung-ho on insisting everyone get a CI, or everyone get a HA, just based on their experiences. It is different for everyone. So when someone like deafdyke (NYNY, I understand you are new to this forum and don't know this -- she promotes a lot of information about CIs and deaf schools which of none of she has any experience at all with -- she has self-admitted that -- and everything she posts here is what she finds from wiki or somewhere on the net) jumps in and exclaims "go to deaf school!" "get a CI", it's just disgusting. It's an individual experience only you, yourself can make, and not decide off what someone else read on the internet.
Frisky Feline
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NYNY, take ALLEYCAT's advice ^^^ 
AlleyCat: I've seen the go to deaf school and tended to fly by it. I'm not going and they've always been near where I lived. I ain't goin'. Wiki is dangerous to use but it's a bit better (I admitted quoting it with caution to others). I also think, correct me if I'm wrong, that we tend to be in synch with our thinkin'. lol - yes, I know what etc. means.
So, if what you're saying is correct (FriskyFeline says you are), I will likely continue to agree with you and visa versa. If random statements are made without being able to support what you state, the writing is worthless. I've been attempting to stay away from strong statements like this and it appears appropriate now. I thought I read somewhere in FAQs or watched y'all over the years get reamed for making a statement without any backing. Some of the lighter reaming came from the man behind the iron mask who goes by the name of Calvin. But it also comes from me to myself or whoever. If you can't back it up, why are you even saying anything.
I suppose the one consistent thing I'm saying is HAs are reversible. CIs aren't. Both yield different results. Sound processing (quote the web for that) sucks for some and doesn't for others. But the one thing DeafDyke and I really agree on is the sound is robotic (I do have enough experience to say that) and it drives me up the wazoo. Wow, I feel like I'm in a program loop and I hear in my head BleedingPurist jumping in and saying something like, "That's what I've been saying, dammit!" But in better English.
Okay, I'm not groveling but with the additional information, thanks.
Hey! I can actually respond to this with some facts of my own. In 1972-73. I'm in my first year of college. I meet a girl my age and she has a nerve-centered hearing loss. She never met anyone who wore a HA before her age. I didn't know it then or didn't hear her say it. So, fast forward to the 1990s. Molly went home that summer and got a hearing aid because of me. She can now hear. I've met up with her husband and Molly and we compare audiograms. Don't even question me about what I know about them because I've been diagnosing friends and making recommendations for them based on the read. Well, they already have the diag and I nail what's happening for them right on the mark by stating stuff like, "This is what you can hear and this is what you're missing." Our audiograms are almost identical (I'm excited and afraid). We trade HAs - her digital and my analog. I can frickin' hear and so can she. Big difference: Molly sounds deaf/Deaf and I do not. The reason to me is I had a big jump on her in life. I had been "hearing" all my life with a loss but then with a HA. I also went to "special ed" I guess you'd call it pre-kindergarten (tossed that in because someone had been hurt by those special ed classes and just wanted to toss in another sorry that person went through that).
I'm in a rambling rambling day. Little sleep makes for bad statements. I may be apologizing for this more and more. But did I get the essence, BleedingPurist?
AlleyCat
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Yeah, I'm not a fan of wiki either. So when DeafDyke uses that as a source, or other sources that she happens to find, it's hard to take it seriously when she doesn't write from experience. I don't know she can say the sounds are robotic when she has no experience with a CI (I would far more appreciate your experience since you have one.) I enjoy reading all the real-life experiences everyone has been posting on this forum.
Yes, ma'am. You're typically pretty quiet and not responsive here with some exceptions. When you write, I better keep it in mind. But, ma'am, AlleyCat and I are pretty much in synch and agreement about the same things.NYNY, take ALLEYCAT's advice ^^^
I'm confused because you're stating the obvious. And, my example is with what happened to my college friend and me. If ya can't hear then get a HA or CI, life is new. Your results will be different from a hearing person (in both cases). Duh? (No slugging, please.)
Okay, I have to take my monster rats and get them some exercise. (They're hooded and a little nutty.)
Well, I can say as a CI user with my experience that on the internet and is misinformation but also with my own, sounds are horrible. I do like hearing Ziva (rat) chew her rat pellet by my cochlear implant. It's a new sound and I like it but I can't live processing sounds like this, as cute as they may be. I don't think anyone else can make that statement
.
Frisky Feline
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