Cochlear implants

[1Dar]

Hello is there anyone out there who has a cochlear implant , but still like me has raging tinnitus ! I seem to be a bit of a Lone Ranger at the moment ........

[Enitram24]

I have been implanted in Augusi2018 and switched on 3/4 weeks later, at first Tinnitus came, I removed the processor after a little while Tinnitus stopped, but the audiologist told me I have to wear the processor, now tinnitus is permanent, processor doesn’t even mask it, I hear music, it’s a pulsative T, mainly when I wake up every morning, I am shaking sometimes, Doctor don’t understand, I am considering to have the implant completely switch off and restart it several weeks later, not sure if T will stop... if it does, not sure if I will switch it on again and rely only on my other implanted ear!

[Jack2316]

Currently 19 with bilateral implants that I've had for almost 17 years. I've occasionally had tinnitus throughout my life but recently, on my right side it has been an absolute nightmare. Around 2 years ago, my right implant failed in which I had replaced twice within the follow up. Since then, tinnitus has shot through the roof and currently trying to communicate with cochlear and ear foundation to get down to the problem. The implants/ processor is still giving me problems and I believe there is something more internal that needs to be looked at. It shocks me that people with normal hearing are getting cochlear implants to try solve tinnitus. That is crazy in my opinion because you're just adding new sensitivity and risking it through surgery. I also believe that having 2 surgeries in the space of two months may be the starting point of my tinnitus. I would love to know what you do and how it effects you on a daily basis.

[1Dar in reply to Jack2316]

Hi Jack. My tinnitus started 3 years ago when I had a grommet put in my ear . I then had it put back in and removed 3 times, a stapadectomy and now I’m onto my second cochlear implant , the first one was painful. I’ve been having lots of pain with this second one and have just had pain infusions. I’m not sure anymore if it really helps with the tinnitus ....but my processsor is fine. I wear a small hearing aid in my other ear. I certainly have many days where I wonder whether it’s all been worth it ? Good luck .... not many people seem to comment on cochlear implants on this sight.

[Jack2316 in reply to 1Dar]

Is there any chance you can message me on here so we can talk more thoroughly. I'm currently out of work due to a number of reasons, so I am using my time to research and hear from people. Currently seeing a professor and we're working together to identify my cause, which I believe was the surgery. I will explain further when we talk. Thankyou for responding, it's good to have someone communicating. Take care in the meantime.

[1Dar in reply to Jack2316]

Hi Jack, I’m 63 so certainly haven’t had this awful tinnitus as long as you. You poor thing. My grommet operation was certainly the cause of it, but you can’t look back and I was the one who insisted on more surgeries to try and make things better, each time making things worse. It’s been a huge roller coaster for myself and my family. Some days I haven’t wanted to get out of bed. I had the first cochlear removed as I had had so much interference . A lot of the time I can’t wear the cochlear because my tinnitus is so high and my ear is very sore. I never get a let up from it though. Please ask me any questions you want, I’m very upfront . Hope this has been helpful .... Jenny

[Jack2316 in reply to 1Dar]

From what you said, it sounds like we've been down the same road. I had my implant removed from my right year for a fault. Since then it hasn't been the same. My tinnitus became 24/7 and having alot of sleeploss because of it. Having discussions with professors and surgeons in the next couple of weeks to try see if we can resolve it. I believe that 2 implantations in the space of a month, due to silly error by surgeon and caused it. I lost my taste aswell so obviously something has gone wrong but no one seems to be admitting anything and just saying it's one of those things. Screwed up my job since I was in an out of hospital and now, it's been roughly a year an half with no income, no job and no progress with my hearing. I'm just greatful that my left ear is completely fine with its cochlear but fear that at some point, it will go and I will be profoundly deaf. As I'm not having any faith to reimplant.

[1Dar in reply to Jack2316]

Hi Jack, you certainly have a bit on your mind you poor thing! So you have a cochlear in each ear, do you get much tinnitus? I had my first cochlear taken out only because it was painful after having so many operations. My surgeon was very reluctant to take it out, it was my decision. The second one is proving to be much the same at the moment so my body obviously doesn’t like foreign objects. I had a 2 year gap though, 2 operations in one month would be terrible. It’s such a sensitive area , but I’m not your Dr. I’m going through a tough time with pain and tinnitus so life is a bit sad over here for me at the moment. Good luck with everything!

[Jack2316 in reply to 1Dar]

Yeah I have a Cochlear implant in each ear. But the right side has been failing me the last few years and now tinnitus is 24/7 and very loud on my right side. It's a rough situation for myself mentally and physically. Wish you the best for yourself and take care during these pandemic situations.

[1Dar in reply to Jack2316]

That’s doesn’t sound too good, are you going to replace the right cochlear implant . . . Have you found the cochlear implant actually reduces the tinnitus ? I.m beginning to have my doubts lately as when I put it on , it doesn’t seem to be making much difference ? Yes this pandemic is a worry. Keep in touch to let me know how you are going ?

[Jack2316 in reply to 1Dar]

If they offer me it, I will turn it down. Cochlear implants do not help Tinnitus in anyway shape or form. I am working with a professor to disprove this technique and quite frankly can't believe the top people got away with selling this idea. One thing I want people to understand is, when you take your hearing away, or have no hearing at all. Your brain works overtime to try void that, creating sounds, replicating tiny sounds within the body and amplyfing it. That's my personal experience and opinion on it. It may not be the case for many people but there is no proof that I've looked into that says it cured tinnitus or atleast helped in anyway.

[1Dar in reply to Jack2316]

Interesting comment , at the moment I agree with you as I’m in pain with mine and pretty distressed .... can I ask you where you live? I live in Australia and they do believe cochlear implants do help with tinnitus . I tried many hearing aids before having the cochlear.

[Jack2316 in reply to 1Dar]

In the UK, and I'm currently trying to get into contact with the engineers and the developers for the past couple of months. My fear is that there are many more deaf people within the community, that don't have the knowledge or ability to communicate their stress with tinnitus should be heard from the developers. As I've grown up I'm seeing more and more negative stories and experiences that is ignored or told things will get better but realistically, the developers don't care about that small majority as at the end of the day, this is a business. But sooner or later, the company will get compromised.

[1Dar in reply to Jack2316]

It’s a hard one ... I have just had a chat with my audiologist about my cochlear as it’s been so painful , but think my anxiety is really revving things up at the moment. I’m taking it off for awhile, so will be interesting to see how I go. Good luck with contacting the engineers, that will be interesting. It’s a cruel thing to have .... I feel for you as you are so much younger than me. Take care

[Jack2316 in reply to 1Dar]

Yeah definitely don't force yourself to always wear the processor. Thank you, appreciate your time to talk with me. Take care of yourself

[1Dar in reply to Jack2316]

You too. Let me know how everything goes !

[1Dar in reply to Jack2316]

Hi Jack , this is Jenny from Australia . Just wondering how things are going with you and your cochlear implants and tinnitus. I hope things are settling for you, I can’t remember what stage you are at with the cochlear . I’ve just started on CBD oil for pain and anxiety , only yesterday so will let you know how things go.

Take care ,

Jenny