my cochlear implant horror story

#1
I had a cochlear implant on March 15, 2018 and the activation was on April 5th. It was a terrible experience from which I have not yet recovered. I created a Web site that explains what I went through. If anyone would like to take the time to read it I would appreciate because I have some questions from those that may have experienced some of what I went through or may know someone who has. The web site is //cihorrorstory.com Thank you for any support or advice.
 

zephren

Active Member
#2
Thanks for sharing your story. What a horrible experience. Since things went bad as soon as they activated the ci, wondering could they not just shut it off/deactivate to see if the effects went away?
 

Beowulf

Well-Known Member
Premium Member
#3
Sorry you had such a bad experience. I have a couple friends who had similar experiences, and though they say they "adjusted," I know they are not the same as before the failed implants. CI's are not for everyone, and it vexes me that they operate on ANYONE without first checking for compatibility with them. Hang in there.
 
#5
I had a cochlear implant on March 15, 2018 and the activation was on April 5th. It was a terrible experience from which I have not yet recovered. I created a Web site that explains what I went through. If anyone would like to take the time to read it I would appreciate because I have some questions from those that may have experienced some of what I went through or may know someone who has. The web site is //cihorrorstory.com Thank you for any support or advice.
You had surgery at the VA?
As much as politicians love to say they support troops, the VA provides horrible specialty care. Your doc had probably done a few CI surgeries before.
 
#6
I had a cochlear implant on March 15, 2018 and the activation was on April 5th. It was a terrible experience from which I have not yet recovered. I created a Web site that explains what I went through. If anyone would like to take the time to read it I would appreciate because I have some questions from those that may have experienced some of what I went through or may know someone who has. The web site is //cihorrorstory.com Thank you for any support or advice.

I had an Implant Jan 2018 . I am Deaf-Blind and held off for many years. Not liking the idea at all. But then in Dec 2017 I was talked into it as life for me was and had been far to difficult. After the surgery and when the activation accord, it was not anything like I had hoped (taking into account that I was extremely optimistic and hopeful, expecting perfection). I understood that in the beginning most sounds would not be "normal". Everything was like an electronic mickey mouse. Then eventually words sounded like the peanuts parents. Ok I thought. It will get better. Because of the damage to my eye's and ears I already suffer from terrible vertigo. So I don't know any difference or effects of this from the Cochlear )if any). 12 month's later there has been no improvement. Now don't get me wrong though. There has been great rewards having this done. For me I can now rid the train. I can hear the train coming (before almost been hit several times crossing tracks.). I can hear Car's and their directions so I can cross streets now (been hit 2 times before implant). I can speak with others so long as its in a quite place and one on one (forget groups) even though I have a terrible voice (deaf voice lol) . But those are the ONLY benefits I've had. Most everything else is horrible. When I'm out and about all I hear is chaos and its loud. People think I can hear when they see the implant and I try to focus but then they get angry thinking I'm just being rude. before I could just say I'm Deaf and get by with that. People assume since you have a hearing device that your hearing is %100 . What bothers me the most is the whole procedure by the Dr and Audiologist. My Dr is a complete moron. When I was being prep. for surgery and he come's in (1st time meeting him) He does the stupid thing most people do. screams into my ear. Kept telling him I'm F*** Deaf! But he kept on. Luckly my sister was there who is a force of nature and screamed back at the Dr. . No one knew sign. And because I'm also Blind They also tried writing to me and my sister asked them just what the H** are they doing? Thank god she was there for the whole thing. And of course my Audiologist knows no sign. What is it with the hearing medical field that most do not know even the basic's of sign? Now my issue is that the Audiologist and the test's she puts me through (you have to go for over a year for adjustments and tests) is in no way REAL WORLD testing. She puts me in an silent booth with earphone. Then tells me that I'm improving. No matter what I tell her, that no way am I improving. That outside or in large groups, it is not only impossible to understand what is being said but that its close to being painful and extremely exhausting since I have to strain and focus all day long. I really at this point think the industry pays them to be overly optimistic and lie. I should have used my intrusion in the begining when they were so overly happy and saying such things as "it will be perfect it just takes time". If it wasn't for the fact that I can ride the train and hear car's, I would rip the damn thing out (if that was possible). oh and another thing is that i was sold on the fact that you can have your iphone stream directly to the cochlear. thought that was so cool. worked for a while in till no I have nothing but problems from it ie: blue tooth keeps dropping out and then it takes forever for it to conect again and by that point whatever I was doing is long past. Lastly. your completly right. Its like a cult with those who love it and seem to have no issue's at all. I've tried talking about my problems and such and I get back basically it's all my fault or I'm doing something wrong. Can't be this PERFECT tech! But I'm stuck because with out what little Benefit I do recieve with this implant it's better then being in a no sound/sight land. I'm just so tired and exhausted by it though and some days close to suicide. I just wish those who push this tech. Dr. and all would just be honest and tone down all the happy people running through the fields jumping for joy that they can hear now. As if it will all be perfect now. False advertisement!
 

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