CI for Unilateral Deafness (but will probably become bilateral)

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KimInGA

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Looking for advise. I am 31 and have profound hearing loss & loud ringing in my right ear due to Meniere's disease. I also have noticeable (and progressing) hearing loss in my left ear. It's not just a loss of volume, but also substantial distortion - - so just "turning the volume up" with hearing aids wouldn't be all that helpful.

Have any of you gotten a CI when you still had hearing in one ear? Anyone else suffering from Meniere's? What would you do in my shoes, having a good amount of hearing left in one ear but knowing that it's probably only a matter of time before I lose it?
 
They don't generally do cochlear implants for unilateral deafness (insurance companies' criteria for getting a CI is severe-profound bilateral hearing loss).... I know there was a person in Colorado who recently got an implant for her single side deafness, as part of a trial, but it's just not a common occurrence yet. I would suggest you speak with a CI surgeon about your options and see if it's something for you.
 
NaidaUP said:
For SSD you normally get a BAHA not a CI.
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Gotcha. I've read a little about those. Do they help at all with tinnitus? I've read that a CI can help with that, which would be wonderful ... my tinnitus is really loud and has been for nearly 3 yrs so I think it's not going to get any better.

Also if (more likely "when") I do go deaf on the other side ... is a BAHA still helpful? Or would I have to get it removed and go to a CI?

Just trying to look at the long term here. Hope for the best, prepare for the worst. I don't want to end up on disability and since my employer is not very forgiving I can't afford to be out of commission for long.
 
You have to have severe-profound loss in both ears to qualify for a CI. What you would qualify for is a BAHA. You would get one in your worst ear now, and then when your other ear goes you would get one in that ear. BAHA is not just for SSD. Go to this message board, The BAHAUsers Support FORUM - Index , there are many on there who have 2 BAHA's. The board is based outside of the US, but most of the information is still relevant, and a few people from the US post there. Good luck!
 
I thought that there was an indication a while back that they were using CI to "cure" Menieres.......I heard this back in the DumbNotes days (10 plus years ago) I would ALSO look into talking with a CI surgeon. Maybe your hearing in the other ear will drop really fast and you can get it. You may want to mention that you have poor speech perception....that might help you qualify.
 
BAHA works for conductive deafness but also SSD as it would be put on your deaf side and then sound would vibrate to your better ear. I've your loose your hearing in your other ear as meineres is inner ear deafness (senso) and not middle ear deafness (conductive) you would have to get a CI when the other ear fails.
 
DeafAlex said:
You have to have severe-profound loss in both ears to qualify for a CI. What you would qualify for is a BAHA. You would get one in your worst ear now, and then when your other ear goes you would get one in that ear. BAHA is not just for SSD. Go to this message board, The BAHAUsers Support FORUM - Index , there are many on there who have 2 BAHA's. The board is based outside of the US, but most of the information is still relevant, and a few people from the US post there. Good luck!
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Yes BAHA is used for SSD or conductive loss, meineres is inner ear (senso) deafness so once the other ear goes deaf, she won't get used out of a BAHA.
 
KimInGA said:
Gotcha. I've read a little about those. Do they help at all with tinnitus? I've read that a CI can help with that, which would be wonderful ... my tinnitus is really loud and has been for nearly 3 yrs so I think it's not going to get any better.

Also if (more likely "when") I do go deaf on the other side ... is a BAHA still helpful? Or would I have to get it removed and go to a CI?

Just trying to look at the long term here. Hope for the best, prepare for the worst. I don't want to end up on disability and since my employer is not very forgiving I can't afford to be out of commission for long.
Click to expand...

Have you read the "tinnitus" thread? I have a CI and it has not helped my tinnitus in any way. Good luck!!
 
Hi Kim,
I have some similarities to your hearing and have a CI in my dead ear.
I am 30 and lost my right ear to meningitis when I was 9 months old. I got along fine through until April of last year when my left ear started having serious fluctuations of hearing (basically menieres with less vertigo). I had a CROS hearing aid at the time which helped but on bad days my speech recognition would still drop below 50% easily. I went to one of the CI clinics here after talking to several CI recipients whom had encouraged me to ask and see. I walked into the CI center and my ear decided to have a good day. I even scored an 85% in quiet but then she tested my hearing in noise and my speech recognition dropped to 16% and I qualified.

I am now 4 months post activation and I can say that it has been life changing. When my hearing drops on my "good" side, I can rely on the CI and have a chance at a conversation (this ear has been completely deaf for 30 years so it is taking longer than average for great results). In fact I made it through an hour long 1 on 1 meeting using just lip reading and my CI as my left ear was so distorted and awful at the time.

Also for me the loud tinnitus went away a few days after I was activated. My left "good" ear will ring loudly when I'm having one of the hearing drops. That said Tinnitus reactions sadly vary amongst CI users.

Like you I looked into the CI because there are times when I'm deaf in both ears and I also know that sometime in the next 20 years, I will be fully profound in that ear. What really helped me make the decision was meeting with CI recipients and just seeing how easy it was for them to have a conversation. There have been 4 people with SSD and varying levels of hearing in their good ear implanted in my area that I have heard of. There have also been studies done on CIs for SSD with great results.

I looked into the BAHA as well, but the BAHA would only really help me when my hearing is good which isn't when I need it.

What does your speech perception vary between (good/bad day, quiet vs noise)?
 
Chadbert said:
Hi Kim,
I have some similarities to your hearing and have a CI in my dead ear.
I am 30 and lost my right ear to meningitis when I was 9 months old. I got along fine through until April of last year when my left ear started having serious fluctuations of hearing (basically menieres with less vertigo). I had a CROS hearing aid at the time which helped but on bad days my speech recognition would still drop below 50% easily. I went to one of the CI clinics here after talking to several CI recipients whom had encouraged me to ask and see. I walked into the CI center and my ear decided to have a good day. I even scored an 85% in quiet but then she tested my hearing in noise and my speech recognition dropped to 16% and I qualified.

I am now 4 months post activation and I can say that it has been life changing. When my hearing drops on my "good" side, I can rely on the CI and have a chance at a conversation (this ear has been completely deaf for 30 years so it is taking longer than average for great results). In fact I made it through an hour long 1 on 1 meeting using just lip reading and my CI as my left ear was so distorted and awful at the time.

Also for me the loud tinnitus went away a few days after I was activated. My left "good" ear will ring loudly when I'm having one of the hearing drops. That said Tinnitus reactions sadly vary amongst CI users.

Like you I looked into the CI because there are times when I'm deaf in both ears and I also know that sometime in the next 20 years, I will be fully profound in that ear. What really helped me make the decision was meeting with CI recipients and just seeing how easy it was for them to have a conversation. There have been 4 people with SSD and varying levels of hearing in their good ear implanted in my area that I have heard of. There have also been studies done on CIs for SSD with great results.

I looked into the BAHA as well, but the BAHA would only really help me when my hearing is good which isn't when I need it.

What does your speech perception vary between (good/bad day, quiet vs noise)?
Click to expand...

Wow this is really helpful info! This is why I've been a little wary of BAHA. I mean I do think it would be helpful now, but for how long? I had 100% hearing in both ears just 3 years ago. Then I woke up one morning completely deaf in my right ear. I did recover a little bit of hearing in that ear over the course of ~6 months, but my speech recognition is pretty terrible ... 20-25% in a quiet environment and 5-10% in a noisy environment. Until a couple of weeks ago my left ear was still 100% but then another Meniere's attack hit. Now my left ear is at 80-90% depending on the environment. That is fine for now and I'm really hoping it will recover up to being almost normal, but it does mean that my Meniere's is bilateral and my left hearing will almost certainly continue to get worse.

So yes I can see the BAHA being helpful now, with me having 85% and 15% ears. But what about 70% and 10%? 45% and 5%? What I'm trying to understand is, where is the line at which CI would make more sense? My hearing loss is not just volume but also distortion so I do not want the volume "turned up" ... it would be very disorienting. Ideally I was thinking that getting a CI now would be better as I could learn to "hear" with it when I do still have hearing in my left ear ... so then when my left ear does go, the transition to relying on CI would be easier. Does that make any sense though? Can you combine CI and "regular" hearing?

Really appreciate all the advice and insights everyone! I'm sorry if I'm asking any dumb questions or using any terminology incorrectly. This is a whole new world for me to try to navigate ... up until about 3 weeks ago I thought my Meniere's was only unilateral.
 
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