Tinnitus After Cochlear Implant

[Libby]

I had cochlear implant surgery in October 2016. I have recently developed severe tinnitus and doctor/audiologist don't seem to have any suggestions for help with this.

Does it go away? I have it constantly now and it even wakes me from sleep. Also gives me quite a headache.

Anyone know of treatment or solutions? Thanks.

 

[Cameron C]

Sadly, nothing can tell you it will go away. I'd go to an ENT and get hearing checked asap. You still have time to recover (these things take forever) just give it time and hope for the best.

 

[bill 112]

I had cochlear implant surgery in October 2016. I have recently developed severe tinnitus and doctor/audiologist don't seem to have any suggestions for help with this.

Does it go away? I have it constantly now and it even wakes me from sleep. Also gives me quite a headache.

Anyone know of treatment or solutions? Thanks.

How severe was your hearing loss pre surgery?Also is your T constant or only when the CI is activated?

 

[Starthrower]

Oh good question Bill. I was wondering the same thing if her tinnitus is only when the CI is activated or when it is not.

Libby your avatar info says you have had tinnitus since 1996. Could you just be more aware of it since getting used to the CI?

Are you deaf in one ear or both?

So sorry you are experiencing this now. If you are totally deaf maybe using some type of motion device in your hands to take attention away from the brain noise? Using other senses may help someway. Or something visual?

 

[Libby]

Thanks all for your responses. I pretty much know that this is a monkey I will have on my back forever. I have the tinnitus constantly. C I on or not. Was totally deaf in implant ear with severe loss in other. Sometimes I would just like to revert to my old, quiet world where I couldn't hear anything. I think that is probably a common thought among those of us trying to improve our hearing loss. It took me a long time to make the decision for CI. I don't really regret it, but I was just not warned a out this complication. Guess doctors would run out of patients if we knew everything.

 

[Rubenslash]

Well, in some cases the T gets better after CI: https://www.tinnitustalk.com/threads/cochlear-implants-as-a-treatment-of-tinnitus.964/

I also had contact with a member who used to be active here. He told me that he got a CI and that his severe T completely disappeared. I guess it's just another unpredictable element of this condition.

 

[Jkph75]

How well can you hear now? Are you able to understand conversations? If your brain can make sense of the other sounds I would think that it might eventually filter out the tinnitus. What did they say usually happens after the implant with tinnitus? This seems to be a common enough problem that they should be able to give you an idea of what to expect.

 

[bill 112]

No this to me just confirms what I already thought and basically yet again confirms Libermanns theory of noise induced T and H, haircells have literally nothing to do with it, it's auditory nerve fibres that are responsible and Libby is yet more proof of that.

Profoundly deaf-No haircells-No T

Gets CI implant-Stimulates nerve fibres -gets T

This same process has happened time and time again with CI recipients, either they get T after surgery or abolish it or it becomes intermittent when the CI is activated or deactivated, remember there are zero haircells in the ear of a CI patient but yet they still experience this once the auditory nerve is stimulated, to me that is a major clue.
I actually know a woman who was profoundly deaf since birth, she got a CI and actually developed T and H symptoms once it was activated only for them to disappear once she turned it off again, her symptoms were identical to mine.

But anyway, Libby it's hard to know what to recommend to you, it sucks you got T from this but it isn't uncommon sadly, I'm glad to see your handling it so well though.
I do know that this can fade away over time for you, I've seen it before with CI patients who develop T after surgery only for it to go away a few months/years down the line so don't condemn yourself to a life of T just yet.
It's not surprising that they haven't been very helpful to you, usually the case once they get their money from what I've read from previous CI recipients who posted here but all is not lost.
My best guess is that the surgery may have damaged or irritated some of your auditory nerve fibres during placement of the electrode, the blame is solely on them as there isn't any haircells to point the finger at so at least you know where you stand.

As for what to do I'm not sure, maybe experiment around a little with it on and off for periods of time to see if that influences your T good or bad and that way you can work out howto get some relief when you need it.
If it's consistently constant like you say it is maybe leave it on and get some backround noise going to help mask it whilst you go about your life.
These are only suggestions off the top of my head, I'm not in your situation so you and you only know what will work best for you but hopefully these might help you get some relief.

Goodluck.

 

[bill 112]

This was also on TT, notice how the woman developed T and H symptoms when her implant is activated i.e neck pain, hot tenderness etc along with T only for it to suppress once deactivated?

 

[stophiss]

Thanks all for your responses. I pretty much know that this is a monkey I will have on my back forever. I have the tinnitus constantly. C I on or not. Was totally deaf in implant ear with severe loss in other. Sometimes I would just like to revert to my old, quiet world where I couldn't hear anything. I think that is probably a common thought among those of us trying to improve our hearing loss. It took me a long time to make the decision for CI. I don't really regret it, but I was just not warned a out this complication. Guess doctors would run out of patients if we knew everything.

Libby:
A few questions please:
- What initially caused your hearing loss?
- Are you saying you had no tinnitus with very diminished hearing loss prior to your CI?
- How much has hearing improved due to your CI?
- Have you considered or discussed with the doctors that removing your CI may eliminate your tinnitus and therefore return to your previous world of diminished hearing but no tinnitus maybe better?

Thanks for your response to the above and best of luck to you.
PS: bill offered good commentary on your condition I believe. But bill if you see this, curious how you deduced Libby had no hair cells? Possible there are some and/or her hearing loss isn't directly related.

 

[Hopeful1]

Life sucks, doctors must tell any serious complications of any procedure or medication before recommending it.

 

[Starthrower]

No this to me just confirms what I already thought and basically yet again confirms Libermanns theory of noise induced T and H, haircells have literally nothing to do with it, it's auditory nerve fibres that are responsible and Libby is yet more proof of that.

Yes. I agree. So often one gets knocked down by "experts" for this suggestion. My tinnitus is caused by nerve damage due to a botched dental surgery on the back lower molar. Nerves are very close to this area. I have taken a medication for nerve damage since 2002.

So it is well established in my opinion that nerve damage can be one serious reason for tinnitus.

Regarding Libby and your experiences is more serious proof about the CI surgery. I also had a close friend who was totally deaf due to an accident that left her in a coma for months. She awoke with being deaf and almost every bone in her body broken. Fast forward a few years after she woke to deafness and tinnitus she was able to get one CI.
Despondent because the sounds of normal things were very robotic in nature and not the normal hearing we all have.
This was something she was not made aware of. This happened about 10 years ago though.

Thank you for your insight. Do you also have a CI?

 

[GregCA]

Libby:
A few questions please:
- What initially caused your hearing loss?
- Are you saying you had no tinnitus with very diminished hearing loss prior to your CI?
- How much has hearing improved due to your CI?

I don't think of improvements from a CI as "my current natural hearing, amplified" or "hearing better".
It's a different kind of hearing: you have to retrain your brain to interpret the "sound stimulus" for what they are. See here.
The improvements are in the ability to hear things you didn't hear before, but they don't "sound" like what you are used to with natural hearing. You have to relearn to hear.

- Have you considered or discussed with the doctors that removing your CI may eliminate your tinnitus and therefore return to your previous world of diminished hearing but no tinnitus maybe better?

CI surgery is often a one way street, as it quite often destroys the little natural hearing that is left. The skill of the surgeon is obviously paramount as it is really tricky to insert a CI while preserving as much of the structure in the cochlea as possible. Don't expect to be able to "go back to where I was", as in hitting "Undo" in your favorite computer program: it's not that easy unfortunately.

 

[stophiss]

Thank you Greg. No doubt the 'synthesized' hearing due to CI will improve in forthcoming years.
As technically advanced as this technology is, no doubt it will be looked back upon as a rather primitive foray into hearing restoration 50 years from now. The by-product of tinnitus is profoundly unfortunate.
Thanks for help explaining.

 

[stophiss]

Starthrower,
Would you consider sending me a PM? Your privacy settings preclude me from contacting you.
As it turns out our paths including nerve damage due to a bottom molar dental procedure are the same. I presume you have damage to the inferior alveolar nerve aka mental nerve you attribute your tinnitus to. I know a lot about this subject and would like to share a bit. You stated you have been on neuropathic meds since 2002. We can discuss alternatives to the amelioration of pain off line if you care to.

 

[GregCA]

Thank you Greg. No doubt the 'synthesized' hearing due to CI will improve in forthcoming years.
As technically advanced as this technology is, no doubt it will be looked back upon as a rather primitive foray into hearing restoration 50 years from now.

Absolutely. It is an avenue that I'm excited about. We are already very good at signal processing, in terms of generating signals covering the whole spectrum of human hearing, but we haven't reverse-engineered the "interface" that we need to "talk through" to reach the brain very well.

Once we are advanced enough, we can clearly replace the mechanical/chemical process from the ear drum all the way to the nerve (middle ear bones, cochlea, etc) with something with a larger MTBF. Electronics have their weaknesses too, but since they aren't organic, they can dodge a lot of bio-crap.

Interestingly enough, we may be able to "hear more things" than we used to with "natural hearing", if the chips can sidestep natural bottlenecks (such as length of cochlea, resolution of hair cells, etc), and unlock stimuli that weren't able to make it through before.

It's going to take a long time though...

 

[Amber]

It's going to take a long time though...

It would have been better to be born 100 years from now. Now we will suffer our lifetimes and the next generations can enjoy blissful life.

 

[Alue]

I don't think of improvements from a CI as "my current natural hearing, amplified" or "hearing better".
It's a different kind of hearing: you have to retrain your brain to interpret the "sound stimulus" for what they are. See here.
The improvements are in the ability to hear things you didn't hear before, but they don't "sound" like what you are used to with natural hearing. You have to relearn to hear.



CI surgery is often a one way street, as it quite often destroys the little natural hearing that is left. The skill of the surgeon is obviously paramount as it is really tricky to insert a CI while preserving as much of the structure in the cochlea as possible. Don't expect to be able to "go back to where I was", as in hitting "Undo" in your favorite computer program: it's not that easy unfortunately.

I know it doesn't come close to normal hearing, but I don't put much weight 0n that video you linked. There are a lot of people in the comments section saying that's not how it sounds. It's just some guy putting sound through a synthesizer.

 

[GregCA]

I know it doesn't come close to normal hearing, but I don't put much weight 0n that video you linked. There are a lot of people in the comments section saying that's not how it sounds. It's just some guy putting sound through a synthesizer.

Agreed. The video just "makes a point" about the difference between CI hearing and natural hearing, but isn't necessarily accurate in terms of sound representation.
The thing is that it's quite difficult (in terms of logistics) to be able to compare: you'd need one ear with a CI and another one with good natural hearing, and play a sound in one ear vs the other, then ask the patient to describe or synthesize a sound that matches CI "to a natural hearing system". And that state doesn't really happen because as far as I know, no doctor will do a CI if you still have good hearing in one ear, so there is no patient on earth that can help do that.

We can however rely on testimonies from CI patients. Many of them will describe the robotic nature of voices, as well as the lack of pitch, but the ability to hear rhythm is preserved, so the "bass module" can be perceived somehow.

I would love to hear more about CI folks in here.

 

[Candy]

@Starthrower and @stophiss - my mother's neighbour got t straight after a dental procedure as well fyi...

 

[Alue]

Agreed. The video just "makes a point" about the difference between CI hearing and natural hearing, but isn't necessarily accurate in terms of sound representation.
The thing is that it's quite difficult (in terms of logistics) to be able to compare: you'd need one ear with a CI and another one with good natural hearing, and play a sound in one ear vs the other, then ask the patient to describe or synthesize a sound that matches CI "to a natural hearing system". And that state doesn't really happen because as far as I know, no doctor will do a CI if you still have good hearing in one ear, so there is no patient on earth that can help do that.

We can however rely on testimonies from CI patients. Many of them will describe the robotic nature of voices, as well as the lack of pitch, but the ability to hear rhythm is preserved, so the "bass module" can be perceived somehow.

I would love to hear more about CI folks in here.

 

[stophiss]

@Starthrower and @stophiss - my mother's neighbour got t straight after a dental procedure as well fyi...

Hi Candy,
Thanks. My T did not occur right after my horizontally impacted no.3 molar extraction which tooth root resting on my inferior alveolar nerve...but I believe that resulting neuralgia from this nerve damage over time was at least a partial contributor to my tinnitus.
Thanks for your post.

 

[Jkph75]

Interesting. I wonder how she was able to get a Cochlear implant with one normal ear.

 

[Alue]

Interesting. I wonder how she was able to get a Cochlear implant with one normal ear.

She was likely implanted as a child and has had a lot of time to adjust to it.

 

[Starthrower]

Stophiss I don't know how to send a private message here. I really don't want it public. Are the messages sent on your profile private?

Yes the lower second molar from the back in 2002 has destroyed during a routine root canal along with the nerves surrounding my ear on the left side.

Sorry to take this off topic Libby.

 

[stophiss]

Stophiss I don't know how to send a private message here. I really don't want it public. Are the messages sent on your profile private?

Yes the lower second molar from the back in 2002 has destroyed during a routine root canal along with the nerves surrounding my ear on the left side.

Sorry to take this off topic Libby.

Hi Libby,
You have never had a private conversation with someone on this forum that may have a similar background whereby you could compare notes, perhaps offer advice to help someone else and/or receive advice that may improve your quality of life? Wow.
I believe it would be inappropriate to hi-jack this thread for sharing personal experience specific to our nerve damage so I guess we can't communicate.
The way you have your profile set up, you can not receive private messages. Perhaps that is your intent. I have had many illuminating offline conversations via the private message function on this forum so I know my in box is working appropriately. That's that little inbox icon in the top right hand corner on the page.
Best of luck.

 

[GregCA]

Very cool! I recognize the video from one of the suggested videos that came in my feed.
I guess there are people with one good ear and one implant. Not sure how it happened, since doctors don't typically implant when there is a functioning ear, but maybe she was implanted when she was young and the doctors thought both her ears were shot, and somehow the "good ear" ended up developing correctly into a fully functional ear. I wish I knew, it's fascinating.

I don't know if she's grown with the implant in and learned to hear from both her good ear and the implant simultaneously, or if she had the CI put in after she learned to hear naturally, but she does provide a match that is quite encouraging.

Good for her. I hope she doesn't have T!

 

[Alue]

Very cool! I recognize the video from one of the suggested videos that came in my feed.
I guess there are people with one good ear and one implant. Not sure how it happened, since doctors don't typically implant when there is a functioning ear, but maybe she was implanted when she was young and the doctors thought both her ears were shot, and somehow the "good ear" ended up developing correctly into a fully functional ear. I wish I knew, it's fascinating.

I don't know if she's grown with the implant in and learned to hear from both her good ear and the implant simultaneously, or if she had the CI put in after she learned to hear naturally, but she does provide a match that is quite encouraging.

Good for her. I hope she doesn't have T!

I agree. It sounds a lot better than the other videos. She seems well adjusted to it too.

Everyone is different, though. I suspect the age at which someone gets a cochlear implant makes a huge difference in how they adapt.