Bonney 1

[1Dar]

Hello, I have had tinnitus in one ear for 7 years now. I have had 8 operations on my ear , grommets put in and taken out, a bone removed and now I’m onto my second cochlear implant. I still have really bad tinnitus and was wondering if there was anyone who has a cochlear and still experiences tinnitus. It would be great to exchange experiences!

[TinnitusUKPat Partner]

Hi 1Dar - you might find these links helpful: bcig.org.uk/groups/support_...

[Cavalier1]

Hi I have a CI in one ear. I lost my hearing very quickly in both ears due to bilateral cochlear hydrops during covid, and had 6 months with no hearing but lots of tinnitus on both sides whilst waiting for my implant. The procedure was very successful and I remain grateful every day for this, and whilst the implant is in place I don't get much tinnitus at all on that side. I've had grommets, T Tube and steroids in the other ear which has no cochlear implant and Tinnitus varies from silence to a jet engine noise usually when the hydrops are flaring on that side. I sometimes wonder whether all the Surgical intervention has made tinnitus worse?

Hope this helps? I found the info on Tinnitus UK brilliant to help me cope with the tinnitus, and also this forum offers lots of support from other sufferers 😀

[1Dar in reply to Cavalier1]

Hi Cavalier thank you for replying to me. It sounds like you have you have had an ongoing journey with your ears….I certainly know that medical intervention created my tinnitus. It started with a blocked ear.. my surgeon put a grommet in my ear that’s when the tinnitus started . I then had it taken out, put back in and then taken out. I had a bone removed , a cochlear implant put in which was painful and now I have another implant. It’s been a very stressful 7 years but you just have to keep going. My tinnitus never stops , it’s great you get a break from it from time to time.

I live in Australia and there is not a helpline which is really disappointing. I have a great audiologist which makes life easier. This has had a huge impact on my life, just like everyone else. It’s nice to talk to people who have had a similar situation. I just hope one day someone will come up with some magic tablet that will help us all.

Take care,

Jenny

[1Dar in reply to 1Dar]

Hi Cavalier 1 . How are you going? I hope all is well with you and you are getting some peace in at least one point. Cochlear implants do help but I find the ringing still sneaks through.

I’ve been having a really hard time with this horrible tinnitus. I try to switch off as much as I can but it’s hard. Do you have any great suggestions that might help. I’m still in pain from all of the operations , but that hopefully won’t last forever. One day I’m sure someone will come up with something! Just wanted to say hi and see how you are . Jenny

[PABLR]

I am having a unilateral implant in December and tinnitus is my main concern. I have it moderately in both ears. I understand that for many people while they are actively using the implant the tinnitus almost disappears. Is that true for you? When you say your second cochlear implant is that the second one and the same ear, or bilateral? And out of interest, which implant are you using? I can let you know what happens in a few months!

[PABLR]

And I just read the reply you wrote above and it seems like you had the original CI replaced, if I'm reading it correctly.

[1Dar in reply to PABLR]

Hi PABLR …My cochlear implant is the second one in my right ear only. It’s very unusual to have pain, it was only because I had so many operations in the past 6 years. I was desperately searching for an answer that wasn’t there. It doesn’t stop the tinnitus but masks it to a certain degree. I live in Australia , it cost me $10,000 but my health fund paid for it all. You are lucky that it’s just moderate , mine is quite high ….. good luck with it all. 🌞🌞🌞

[PABLR in reply to 1Dar]

I hope you get things sorted out. I hate to tell you how much a Cochlear Implant would cost out of pocket here in the USA - between $100 and $150 THOUSAND! Medicare will pick up most and I think secondary insurance will pick up enough so I don't pay anything! I've been lucky that while I have Meniere's Disease I haven't been through the kind of things you've been through. I will be getting a Cochlear Nucleus 8 possibly as a hybrid if they can save residual hearing. I know Medel is popular in Europe - is it also the most popular in Australia? Good luck.

[1Dar in reply to PABLR]

Hi I’ve never heard of cochlear nucleus 8 … I cannot believe how expensive your cochlear is. I stayed in hospital overnight ( in a private hospital ) and it cost me nothing. Every three years I get a new cochlear for free paid by my health fund. Very different for sure. We are way up north of Western Australia in the warmth camping, it’s lovely.

Yes the medel are the most popular in Australia. It took me awhile to get used to having foreign on my head. !!!!!!🌞

[PABLR in reply to 1Dar]

Cochlear is the most frequently used brand here. Nucleus 8 is the newest iteration. Can be hybrid as well. It's outpatient surgery here so go home the same day. Medicare allows a new one every five years. Temps here well over a 100 in the centre of the USA.

[1Dar in reply to PABLR]

Yes I believe it’s very expensive over there if you get sick. I have a rondel and sonnet implant. One goes behind my ear the rondo is simply attached to my head. I am in pain a lot though due to so many operations. It hasn’t been a smooth journey we are in a caravan in a caravan park beside the beach , am feeling the most relaxed in years. I’m not sure what 100 is in Celsius but I think it’s pretty warm . It’s about 34 degrees Celsius here , pretty warm!

[1Dar in reply to PABLR]

I forgot to say the make of my cochlear is Medel …hope all of this helps , let me know if you need any more info