my cochlear implant horror story

Georgewes

New Member
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

Well-Known Member
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
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.
 

ecp

Member
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.
 

Mossyfrog

New Member
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!
 

Georgewes

New Member
Now it is going on 1 year since the CI failure and I still have roaring and rumbling in my head that I had never had before the surgery. In short, there was no benefit what-so-ever to that CI surgery and worse than no benefit putting up with all this stuff. My balance is back but not back to normal. I may never be the same person again.
 

Georgewes

New Member
I saw the 3rd Otolaryngologist about the roaring and none of them really knows what the cause is or anything else about it. Doctors don't know as much as we think they do.
 

pandemic mess

New Member
hello! i was abducted by aliens last night and they implanted a cochlear in my head. i am excited to read your site! laurie cruickshank 714-200-6928
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
 

stephaniep

Active Member
I'm so sorry you are going through this. I am in the process of going through tests for CI. One of the listed risks is that surgery may not help or benefit. At least they are honest about that Getting the results of my CT, the surgeon said he thinks he can do it, that concerns me because he should know and not think?. They did mention the Chimpanzee voices until the brain is taught to hear again? I have tinnitus now which is driving me close to losing it at times? I can't imagine those sounds being amplified? When I brought this up, I was told I will be able to turn it down? I hope you get the answers that you need and everything will work out for you and that You will get some improvement from the CI's
 

stephaniep

Active Member
I have Tinnitus and experience the roaring at times, other times a constant motor of some sort running. I know how frustrating that can be and as I have said in the above post, I can't imagine it being amplified more than it is? My question, did you have tinnitus before the surgery, and could the stress of surgery have worsened it, or brought it on? Looking at my Risk Sheet, Balance problems isn't one of them nor are noises coming from within the head? I hope they can get to the bottom of this and provide you with some sort of treatment to make your life more comfortable.
 

BOBDUK

New Member
Hello: 30 years ago (at age 40), I received my cochlear ear implant after the nerve hairs in both ears died. I believe I've only had 3 different processors in those 30 years ... mainly because as technology improved, my OLD implant wasn't compatible. Recently, I experienced horribly loud explosions when I tried wear my processor so the doctor decided to operate and replace my implant. I've gone without any hearing for the last 2 months until yesterday when they turned it on. I was excited thinking I'd hear so much better, but so far all I'm getting is background noise but can barely make out voices. I hear what sounds like a belt buckle in the dryer and popcorn popping in the microwave ... but voices (even my own) are barely audible. I'm supposed to wear this new processor consistently for a week and then go in for another programming session, but I desperately want to take it off. I guess my main questions are:
1) has anyone experienced this sudden unbearable exploding sound necessitating immediate ?
2) what adjustments need to be made to this new processor to improve the sound?

I'd appreciate any help/suggestions you have to offer. TY
 

jondoe

New Member
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 read your blog. I'm not surprised and I'm sorry. Thanks for putting it out there (with updates through the years).

I watched the transition and evolution of cochlear implants from inception. They scared me and I kept up with the changes. So, making the decision to get an implant wasn't easy. I researched the companies, surgeons (as best I could) and had issues with both. I explored BAHA years earlier but I knew where my bone conductive loss had to fall for it to be helpful. I found 1 ENT who lied to me by saying it would help me. No, it wouldn't; my bone conductive loss was greater than the benefit of having a titanium spike put in my mastoid. An audiologist gave me two recommendations. I asked who wouldn't lie to me and one name immediately came off. It's not atypical or wasn't for me.

CI surgery didn't take long but it took me months for the surgeon to explain the mass in my head. He said he was afraid I was contacting him due to implant rejection. What he never told us after surgery was the bone was so weakened that it was held in by screws and other material. IF rejection occurred, god knows what would've happened. That means, when the implant stops working, I can't have it replaced. It means if I need an MRI, it can't be done.

My tinnitus, after surgery, was massive. Saying, "Goodnight," became a nightmare due to tinnitus soon after surgery. I continue to live in that nightmare which as grown exponentially.

Good luck with this, folks. I know there are success stories but it's not mine.
 

x1heavy

Active Member
If you had a failed surgery and the resulting noise situation is too much, why not kill it entirely. Get some peace and quiet maybe?

Or is that option too barbaric?
 

stephaniep

Active Member
I suffer with tinnitus, and this post scares me. I asked if the tinnitus would worsen after the implants and was told it will most likely get better because I will hear other sounds? I can relate to the buzzing and roaring sounds without implants, but what will happen after surgery?. I am sorry this has happened to you after CI's? There are risks with putting in CI's, sometimes very serious ones, but I was told the serious ones are rare. It's no consolation to those who have to suffer. I wish for your sake that something will be done to make you more comfortable? Why aren't you getting it removed if it is unbearable? Are you getting some benefit from them elsewhere, like in spite of the noise, do you make other things out better?
 

Dragonflyxoxo56

New Member
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 been there since 2007 and I had enough then I went to ENT (Ear, Nose & Throat) and I requested to removed it during 2015. I felt so much much better and no more migraine 24/7
 

tony11123

New Member
I really would like to see these ent's, surgeons, audiologist, doctors etc. be held accountable for the damage they do when they get it wrong...yes, yes, I've heard all the excuses, as to what the risks are ,sorry, not acceptable.
The above mentioned people are supposedly professionals, hence a professional out come is expected and required, god only knows they get paid way way too much for their egos!
We can put 12 men on the moon, shrink billions of transistors down to fit on a finger nail sized wafer, split the atom, and, so the list goes on.
Soooo, what is stopping hearing from being fully restored, to normal or better hearing?
I suspect greed, say as in money!
To all, stay safe and have a pleasant day.
 

tony11123

New Member
I really would like to see these ent's, surgeons, audiologist, doctors etc. be held accountable for the damage they do when they get it wrong...yes, yes, I've heard all the excuses, as to what the risks are ,sorry, not acceptable.
The above mentioned people are supposedly professionals, hence a professional out come is expected and required, god only knows they get paid way way too much for their egos!
We can put 12 men on the moon, shrink billions of transistors down to fit on a finger nail sized wafer, split the atom, and, so the list goes on.
Soooo, what is stopping hearing from being fully restored, to normal or better hearing?
I suspect greed, say as in money!
To all, stay safe and have a pleasant day.
 
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