Odd ? - Do any of y'all know of a CI forum that gives demerits?

[SBirn]

What baloney (now check out the ingredients in it or milk. They're filled w/it.

Was that really all you said? "I'm scared as well." Or is that what you were feeling but what you actually typed was something else?

You made a run of assumptions from a post of mine that was pretty logical, reasonable and wasn't a reply to you. I provided example of possible responses to someone who is scared and deemed them simple-minded and ignorant... because they are. I don't know what you actually said, but I'm pretty sure it wasn't "I'm scared as well" if you were told to remove it. For you to react as you did indicates I must have hit close to home even though I didn't say you said any of those things.

Shel's response is more true to anything you've said and a lot funnier. I know you didn't address me and my verbiage was directly involved, so what exactly did you think I would do ... ignore you? That's a joke. You're running from now I will say "implied" rather than direct truth to not think (as Shel said) I would not have a response.

Your are such a bully and often can be perceived as a martyr and I remember your older postings sounding like that. Nothing has changed. If you continued reading some of my posts, you would have seen that. That's not an assumption. I did not need to list exactly why I was scared and 99% of the time, I am objective rather than subjective. I need not say more than that. The only thing I did was find out who was responsible for maintaining the website and since it was so phony and run and moderated by an implant company, I made the logical decision to withdraw my ID from it. While you may be a phony or an aggressor hoping for a response, I will continue to read it because it is not full of bs.

Kudos to Shel .

 

[SBirn]

Yo,
This is an understatement. Man, they make a lot of money for one implant. No wonder they tightly-control their websites. lol ... that may be redundant since that is what companies do. It was huge (or still is - I'm just not up-to-date) in the HA industry but seems (note not based on fact) bigger here.

What's interesting is that there are only three in the U.S. Cochlear, being the biggest publicly-owned vs Ad. Bionics - the teeny kid up against them. Med-El may have the slight advantage here because while as teensy as Ad. Bionic but isn't publicly-owned and that gives them greater latitude to be innovative. They aren't beholden to shareholders. They should be able to hold their ground.

My dream, and I am too old to ever see this happen (and it may be a fantasy rather than a dream) is to have an outside, unbought, and independent company investigate the FDA. But there's way too much dough at steak. (I'm well aware of what I typed. They're healthy industries .)

 

[Paullys50]

I hate that someone said, CI surgery is very low risk surgery. PLEASE don't say that.

my girlfriend who had a csection and she almost died from it.

the little girl who had tonsil removed and she died.

Someone who had CI and have really bad balance than before. If someone had never had CI surgery then the balance would be not too bad.

But it IS low risk surgery. It doesn't involve opening your chest or abdomen exposing vital organs. While you could argue it's near the brain it's still a stretch. While yes complications can occur, you have to keep it in perspective. It's not open-heart surgery, it's not an organ transplant, it's not a procedure to remove a tumor...etc. It's unfortunate that bad things can and do happen, that's why it's "low-risk" and not "no-risk".

People who have never had surgery need to be given perspective and be educated on the actual risks of any surgery. They don't need to be get freaked out because they read somewhere on the internet that contradicts the "low risk" assessment of a CI implant (or any surgery for that matter).

Life is nothing but a game of odds, game of risk. Some hit the jackpot, some lose it all to the house. I would imagine the odds of injury or death on any given day are probably a lot greater just by getting in a car to drive to the CI surgery than having CI surgery. People are more freaked out boarding a plane than getting in their car.

 

[SBirn]

BP speaks not from the brain. There are so many facts you appear to choose ignore and I do not believe you are ignorant. Read between the lines.

There was also no way BP (hey, I like that abbreviation) could be working for any implant company. As any one of them would look exponentially worse (is that possible).

I know enough since I grew up with parents (two out of three) working reasonably high-level positions in the government. That doesn't mean I'm smarter than anyone but it does mean I questioned a lot of what I saw and heard (in those days). I questioned the economist about what was going on since the statistics we were told (we as in "the people") did not match my own reality in the business world (@2000). There were discrepancies. We were not being told the truth and I got lovely excuses from the economist as to why. I did not take anything (ah, I can't remember all the arguments I had) so make that "much" not anything at face value.

I grew up thinking and using my brain based on facts as they existed. I am not prone to being subjective. These truths and more came to fruition. Ritalin, anyone? Gad, I saw that coming like a tornado when I was about 13 years old. Oooh, how about a few doses of aspartame? Try drinking a six pack of diet soda a day for a month (make sure they're warm) and do your own experiment. Facts, yes. Conspiracy, nope not in the slightest. It just takes some years (most times) to wait for the reality to hit.

Folks, you can have businesses out there making $$. It's a capitalistic system. They are not all evil and I know you know that. So long as the FDA continues to accept reports as truths as they do, we will continue to be in trouble. That will never change, so we have to make the best calls we can. We'll win some, we'll lose some.

I've seen enough of BP's goop and false accusations that I swear to ignore future postings. His/her worth has been proven in fool's gold. Taint worth getting into.

 

[SBirn]

Okay. Just a quick point. How many people "on a given day" have an implant versus get on a plane?

With the nuttiness, cutbacks, and sloppiness (as a result) going on these days conditions have worsened. I paced heel to toe freezing my tootsies off in an ENT's office in lovely Chapel Hill for @20 minutes. I looked at the dust soaking the office where I was about to be examined with "sterile" (they probably were but the office was not) instruments. I couldn't see under the dust. That should have been my clue to walk away. I did but a week later after examining six hard facts and dropping one that I determined was irrelevant to surgery.

I completely agree with you. There are risks taken every day. But I do not have to sit idly by and ignore what is happening. Tonsil surgery should be low risk and it was but a death resulted from it (and I don't know the facts). And my mother-in-law should not have died on the operating table. I will not desensitize myself to what's going on as the commercials/corporations want us to do (oh, all the drugs make me want to run out and get on them and besides, they all have side-effects). Our reality has been created/invented for us. We just need to figure out what it really may be (then it will change) and go the lower risk way or understand what we're potentially walking into.

 

[BleedingPurist]

Shel's response is more true to anything you've said and a lot funnier. I know you didn't address me and my verbiage was directly involved, so what exactly did you think I would do ... ignore you? That's a joke. You're running from now I will say "implied" rather than direct truth to not think (as Shel said) I would not have a response.

Your are such a bully and often can be perceived as a martyr and I remember your older postings sounding like that. Nothing has changed. If you continued reading some of my posts, you would have seen that. That's not an assumption. I did not need to list exactly why I was scared and 99% of the time, I am objective rather than subjective. I need not say more than that. The only thing I did was find out who was responsible for maintaining the website and since it was so phony and run and moderated by an implant company, I made the logical decision to withdraw my ID from it. While you may be a phony or an aggressor hoping for a response, I will continue to read it because it is not full of bs.

Kudos to Shel .

It's a bit sad that you are so skittish. I'm sure there are a host of valid reasons behind why you are the way you are. I'd sooner have a civil conversation and my initial instinct would be/was to reason with you for your benefit. I do take issue with unfounded alarmist attitudes because I do know the reality behind Hearing Journey and the people who make it what it is (in the most positive sense, not what you perceive it as. ) I've met the people, all of them with individual stories and varying results. People are brought together by that journey in one of the most positive ways. It's one of those things in life that restores your faith.

I'm sorry you didn't have that experience and refuse to believe it's real because it doesn't fit your mold. You have trouble believing it's real. It's a shame. I mean that sincerely because having support from others at this point can go a long ways. I hope you are getting that from somewhere. The people I met during my time were essential to my own success.

I do hope that one or two years from now you'll find much more benefit from your implant.

 

[deafdyke]

Shel's response is more true to anything you've said and a lot funnier. I know you didn't address me and my verbiage was directly involved, so what exactly did you think I would do ... ignore you? That's a joke. You're running from now I will say "implied" rather than direct truth to not think (as Shel said) I would not have a response.

Your are such a bully and often can be perceived as a martyr and I remember your older postings sounding like that. Nothing has changed. If you continued reading some of my posts, you would have seen that. That's not an assumption. I did not need to list exactly why I was scared and 99% of the time, I am objective rather than subjective. I need not say more than that. The only thing I did was find out who was responsible for maintaining the website and since it was so phony and run and moderated by an implant company, I made the logical decision to withdraw my ID from it. While you may be a phony or an aggressor hoping for a response, I will continue to read it because it is not full of bs.

Kudos to Shel .

*faint* Lady we needed you......You're 100% correct.....He acts like ANY semi negative comment on the CI means the commenter is one of those extremists who is totally against the CI. The CI CAN be awesome in many specfic situtions......And I have supported it....but his trolling.............

 

[shel90]

 

[BleedingPurist]

*faint* Lady we needed you......You're 100% correct.....He acts like ANY semi negative comment on the CI means the commenter is one of those extremists who is totally against the CI. The CI CAN be awesome in many specfic situtions......And I have supported it....but his trolling.............

Calling you out when you profess to know what those specific situations are is not trolling. Of course, you're thrilled. Two peas in a pod. Except she's actually deaf and you aren't.

 

[Paullys50]

Okay. Just a quick point. How many people "on a given day" have an implant versus get on a plane?

Just for clarity, the plane had no direct comparison to a CI. It was a comparison on travel by car versus travel by plane and the likely hood of injury/death in either instance. The fact is, travel by car is a much higher risk than travel by plane. Yet, driving a vehicle is second nature and nobody thinks about it. Where as flying by plane, people have fears and are concerned for their lives to fly. It's completely backwards but it's all about perspective.

I did compare driving a car to the facility where the CI surgery will take place versus the surgery itself, and I am quite sure my 2 hour drive to the facility was/is higher risk than the surgery. Add in all the trips back-and-forth for followups and mapping...yes I am quite certain driving my car to-and-fro is a higher risk than the surgery itself.

I agree that you don't have to sit idly by, and if there are piss poor places to have surgery/medical care they should be identified and known to the public. The battle is the same one that is being fought against drunk drivers, texting and driving...lives have been taken in all instances of life that should not have been. An operating room is a much more controlled environment than the world outside it, so you expect that room to be as safe as possible. You expect to wake up move on with life. You have zero control and have no choice but to trust that the surgical team to fix you and not hurt you. But, they are human too.

 

[deafdyke]

Calling you out when you profess to know what those specific situations are is not trolling. Of course, you're thrilled. Two peas in a pod. Except she's actually deaf and you aren't.

WRONG.............Sorry but WTF are you afraid of? That your stock options will go down if the CI isn't painted in The Best Possible Light? You're the one who gets offended when someone even dares to bring up the fact that response to hearing technology is very indivdual....Yes, there are some specific groups that do extremely well............but just as with HAs people really do respond very indivdually to hearing technology.......Oh and I'd suggest not relying on industry sponsored studies where they cherry pick the parcipatants for your claims..........

 

[BleedingPurist]

WRONG.............Sorry but WTF are you afraid of? That your stock options will go down if the CI isn't painted in The Best Possible Light? You're the one who gets offended when someone even dares to bring up the fact that response to hearing technology is very indivdual....Yes, there are some specific groups that do extremely well............but just as with HAs people really do respond very indivdually to hearing technology.......Oh and I'd suggest not relying on industry sponsored studies where they cherry pick the parcipatants for your claims..........

I can tell you better than you can tell me about varying response to hearing technology. I've never said otherwise. I don't rely on industry sponsored studies. We don't need any industry sponsored studies to tell us what happens with the hearing nerve when it goes it goes without stimulation. So when you tell parents they can take their kid to CI World and pick one out together when they get older if they want one, you are being irresponsible and taking advantage of their vulnerability to steer them to your own agenda. When you tell someone who wants to hear to hold on to that useless hearing that they are testing at 10% discrimination with a hearing aid and wait until there is nothing at all, you are being irresponsible.

It's not about me being afraid of anything. It's about watching you give out just plain bad information to people that can have long term negative consequences or delay getting the help they want. Getting a CI can be scary because most people don't know much about them until they have to consider them. When someone has been evaluated by a reputable center and told they qualify, come here trying to find more information, meet you, tell you how they can hear some with a hearing aid, have you tell them to hold on to that hearing aid for dear life until there is nothing at all... you aren't doing them any favors. You don't have their hearing loss. You don't have to deal with their level of struggle. They aren't HOH if they are being recommended for a CI. It's like a priest telling someone who is gay that all they have to do is live in the light of God and not have any sort of sex and all is fine. These are people that test in a range that means a CI is their best option. These are people who want to hear.

You try to accuse me of having an agenda in the exact same way conservatives like to accuse gays of having an agenda. It's irrational and conspiracy-minded where none exists. What I've done is told people to ignore you.. a non-CI user or professional, and listen to the professionals. Not the CI companies. I've always said to research properly and not to rely on the marketing brochures/media. Know what you are getting into. Know what your choices are and what decisions you are making. If a parent decides not to implant their child while knowing all of the facts from all viewpoints, that is great. If a parent decides not to implant their child because of wrong information from you, well besides that they are stupid to come on a forum like this and listen to you, you've earned yourself some real karma there.

The professionals do not tell you that you are going to be hearing when you get a CI. They do not tell you that you'll hear this or hear that with a CI. They evaluate you by counseling you to ensure that you have realistic expectations. If there are clinics doing otherwise, I want to know about it.

I say the things I do as someone who once had similar doubts about CIs, how they work, and their effectiveness. It's not all that different from a parent who once had very ignorant ideas about gays until their child came out and was forced to reevaluate everything or someone coming to accept their own gayness.

I have never recommended CIs as being for everyone. I've only recommended them to someone who properly qualifies and wants to hear. No more and no less.

You project your own agenda on me, which is why you fail to understand where I come from. You are not a CI user. You do not know how they sound. You do not know the hows and whys resulting in varying outcomes. You are like one of those politicians who claims to not be anti-gay, but votes against gay rights based on false ideologies such as gays shouldn't be allowed to marry because marriage is about love and gays just have a mental illness.

 

[ecp]

Sort of silly if ya ask me....anyway, while in high school, I got so many dermerits that I was "campused" every month.......waking up late, forgot to dust well...etc., etc.

Did you go to PCC? (http://en.wikipedia.org/wiki/Pensacola_Christian_College#Rules_and_regulations) They are notorious for ridiculous rules. My college officially didn't have rules except to respect yourself, respect your community and respect property.
Despite not having rules we, all 1,500 of us, generally lived like well behaved adults. Nobody made sure we were awake at a certain time, if we missed our 8am class we had to be adults and talk to our professors and arrange to make up our work.

But unlike PCC, we had co-ed floors and bathrooms, and contrary to what some people think about coed floors, there wasn't ever an outbreak of pregnancy because, adults (17 and 18 year olds should be treated as adults) can make choices to have sexual relations safely. However, if they are outlawed from even walking on the same sidewalk as a member of the "opposite" sex (don't even get me started in the ridiculous enforcement of gender binary), and are treated like kids, people will rebel. And people will act how they are treated.

 

[SBirn]

BP seems like a troll but I agree he/she really isn't. Time will tell.

Sorry, I wrote a response and decided it was not necessary. I removed it.

 

[Frisky Feline]

Nice introduction.. what a handful thread.
welcome. LOL!!

 

[SBirn]

Madam Frisky - my response to you and dang, you are right

Nice introduction.. what a handful thread.
welcome. LOL!!

Yeah. It all started with a real question. On an AB thread (my implant of choice - I'm out now) - the company that had a sufficient number of recalls voluntary or not. I knew that. I'm not stupid. I still chose them. Ya win some ya lose some and you consider facts. I was on their forum (no names being mentioned) but I thought the people and mentors were on drugs (or something was in the water) where they wanted a normally simple line removed with which I concurred with a woman scared of surgery (and mine was more detailed consisting of four procedures) is scary whenever you go under. If you cannot admit that, being subjective, of course, boooooom ! it's pretty stupid. That's keeping the people from runnin' scared. And, a simple line of concurrence is not going to make people go nuts like BP says. But it was AB's website - gussied all up kept tight and "sterile" or stupid and I'm never going back there.

The commenter here was right - the kid who had her tonsils removed died. Simple surgery caused the kid to go into cardiac arrest and my ear was peeled back and my skull was drilled, some was removed, more icky stuff done (technically writing) and placed back (because I'm special). Hospitals can have MRSA or other staff viruses. There are indeed risks to everything but we cannot fall into and ignore the possibility. As adults, we can't get hysterical about it, and with my own odds for the number of things that could go wrong I didn't panic. I did wonder what life after THIS surgery would mean. Objectively, I really did have good reason to wonder.

CIs are good and bad and it's up to the receiver not an outsider to make that call. We know information is out there that isn't true and it's hard dissecting what to believe. I guess is comes down to a matter of we'll see/hear what happens. Companies will push to sell their wares. Speculate based on that.

An elec. engineer wanted me to find the forum where I got demerits. So, I started a bit of insanity here, huh? I was just asking from the healthy cumulative knowledge of this site. And this, FF, is where it started. The CI industry is controlling like any company. That's not news.

So I learned some lessons (in IT, I liked the phrase post mortem).

1. BP 1-5% valid points (but that's my perspective). He/she isn't all bad. But there is a great deal of being myopic in there. BP also appears rather manipulative (all these are just my opinions and not facts) and gets very angry pretty fast. Doesn't make BP all bad. You learn what to take in and what to ignore. That's fine - we all do that with each other in life.
2. "It" (BP) is not a troll - at least after IT forums BP is not a troll.
3. Shel is really funny.
3a. If I am quoted by someone even not to me, I have the propensity to respond. I made the statement. Seems like human nature to me.
4. You're (FF) very nice.
5. Botts gets protective and is careful about the protection but nicely protective nonetheless.
6. The list of y'all and your personalities is really great. I enjoyed watching the evolution and heaven knows, I didn't do it on purpose. Seemed like one experiment, though.

We never did learn where the demerits came from! But we learned many other more important lessons.

Oh yeah, me. I didn't mean to start a mini war. I asked a simple question. But people got guarded. People got vindictive. People were myopic. Y'all know a lot more about me now.

I did not know what I was walking into (CI) because I had no guidance (doctor or nurse) and knew about the surgery two weeks prior to it happening. I knew what I read and I knew a lot of that was bogus and that is without a doubt based on hardcore facts. But, remaining deaf or maybe not being deaf was what this all boiled down to. At the moment, I still consider myself deaf with the CI until Marcus dog doesn't sound like a barking duck, I am deaf. I have nothing against ducks except a world that sounds like one.

Based on what happened to me four years ago, my partner was concerned things could get out of control and I could die (ach, I had a Trust ). This, I wasn't worried about or I'd have my own brain tied up in knots. So, my information was mostly objective. I didn't need to share this. I watched people do their own thing based on some amount of speculation.

I sort of see you in the background FF, watching, purring and occasionally maybe letting out a tiny scratch or two. Maggie Belly used to like to bite my head sometimes, too ! I like kitties because they really know just what to do and say.

Folks, does this really need to go on? Certainly, there must be something else we can attack like the Civil Rights Movement?

Cheers all and a happy Boxer Day, Quanza (can't spell it), and past (quoting my dad) Merry Chanukah, and Happy Christmas. Peace, true peace and truth to all.

 

[Frisky Feline]

I can be a fierce fur-person when I want to. well, rarely. I think.