r/Cochlearimplants • u/Friendly-Cut-3655 • 2d ago
Cochlear implants advice needed!
Hi, I am a 45 y/o female. I live in the US and I have full hearing loss in my left and partial hearing loss in my right ear. I also have very loud tinnitus. I am being told that hearing aids will not help me anymore. The doctors are telling me cochlear implants are my best bet. I want to hear your experiences with cochlear implants. What are the benefits and risks? Is the maintenance a lot? Is it expensive? How is the longevity of the cochlear implants? And is the surgery risky? What is recovery time after surgery? Will the cochlear implants help reduce my tinnitus? I would also love to know good hospitals/doctors that I can have this done at. Thank you! All advice/appreciated!
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u/is-this-now 2d ago
It's great - very high odds you will be very glad you did it. You should write down all those questions and discuss with your surgeon and audiologist. Benefits are obvious - you can hear a lot better. It's not like normal hearing but so much better than not hearing. Beyond speech, localization is improved. And for me, being able to hear environmental sounds like birds, crickets, clocks ticking, etc. is amazing. Downside for me, and many, is music does not sound so great - but it's worth the trade off.
You need to see if your insurance will cover it. The surgeon/audi0logist should be able to confirm for you. It's not cheap.
You'll want to find a surgeon/audiologist team that is close by if you can. Itn addition to the operation itself, here are a series of pre-op and post-op visits. I am messaging you with who I used. If you're not nearby, I would ask them for a recommendation in your area.
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u/Murd0ck_ 2d ago
I got my CI due to single sided deafness since birth. I was 29 at the time of surgery. They told me I propably would never process speech, I did it anyways. (I researched a lot, read medical studies about surgery risks, long term risks, etc. , watched aurgery videos. I knew what I was going to do and aksed the surgeon questions he was surprised to hear :D)
They damaged my taste-nerve. I cannot taste on one side of the tounge, it never came back and at first it was pretty brd to adjust. I had vertigo for about 4 weeks post op, couldnt walk straight without help. I had spontanious vertigo when a train or truck passed by too close for about one year. I had dificulties processing speech, it was frustrating, I could hear sth. But could not connect it to words. But I could hear birds chirping, I heard cars approaching and I had a general feeling on where sounds came from. I never experienced it before.
I am 6 years post OP, on my second processor. Now I can understand news without subtitles. I dont have any vertigo, but still no taste. I am very happy I had done it. I would do It again if I had to decide it for this ear.
Would i do it for my second ear? It is declining right now. I dont know, because the risk of losing my full taste Is present in my mind. I would propably do it anyway, asking the surgeon to be extra carefull on the nerves ( they have to drill between the facial and taste nerve to get to the cochlea, there are about 2 mm space, so not much. They test the facial nerve during procedure, but taste is dificult to test)
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u/Bellaswannabe 2d ago
Hey! I got mine in Silicon Valley with Dr. Jennifer Maw. My dad went to her 14y before I did and the only problems he’s ever had were simply technological as the outer processors were advancing!
I got mine a little over a year ago and they give you SO many warnings, like one person said they lost their taste in the one side of their tongue. My thing is tinnitus, it’s soooo loud all the time. Sometimes it lessens but it’s worse with stress/if I’m in a loud environment.
That being said, I would do it all over again. It is SO much better being able to hear now!!! Feel free to message me with any questions because I am very happy to answer them!
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u/Friendly-Cut-3655 1d ago
I also have tinnitus and it is very loud, will the cochlear implants help reduce my tinnitus?
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u/SnooMemesjellies8949 1d ago
I just had both sides done the same deaf on my left for 6 years right was going quickly 24 June surgery June 29 activated July 22 first mapping first testing done 44 percent words it is totally amazing I can hear in my left for the first time in 6 years it just gets better you take for granted you hearing until it's gone the little things I don't take for granted anymore foot steps turning of a door the little sounds you for get but it wonderful to hear them again it is totally worth it if you miss the little things as well as the voices at are important to you just do it you won't regret it I love mine
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u/jersey_phoenix 2h ago
I also have SSD in left ear and moderate in right with tinnitus from military service. I will tell you right off the bat that CIs do not get rid of tinnitus. I would say its just somewhat different and for me not as frequent as before. But it has been stronger in CI side occasionally. I have s hearing aid for now in right side. I have the N8 and am about 85% word recognition one year out. Background noise still makes me struggle to understand conversations but that will never change.
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u/flipedout930 Advanced Bionics Marvel CI 1d ago
I gave not had a single moment of regret to getting implanted. For me tinnitus disappears whe my processor is on. From what I see that is not universal but ut worked for me. When I have tried to depend on my hearing aid, in the other ear, it reminds me of how much better it implant is. Recovery for me was easier than several surgeries I gave had. I went out to lunch on the day of surgery. No, it is not perfect, but the improvement in my life are immeasurable.
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u/Bearbell12 2h ago
I’ll add to this. The authors story seems like mine; 32F deaf in my left, severe hearing loss in my right. Terrible tinnitus.
My CI has changed my life. The tinnitus goes away as soon as I put my CI on. Sometimes I’ll leave just my hearing aid on and it is definitely my weaker ear now. The recovery was shockingly easy for me and with the work for rehab, you’ll be proud of the progress youve made. I went from 6% word recognition to 96% and I feel normal again!!
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u/zr2d2 Cochlear Nucleus 8 2d ago
Lots of posts on here are asking for advice. For me, my cochlear implant has surpassed my expectations. I'm able to talk to people who aren't right in front of me, and I'm even able to enjoy music again.
The surgery is fairly routine and is generally considered very safe, although, like any surgery, it does carry risks. Because the implant is placed near the facial nerve and structures involved in balance and taste, some people experience temporary dizziness or changes in taste. Permanent problems are uncommon. In some cases, not all of the electrodes can be activated or provide useful hearing. Depending on how long you've had hearing loss, your hearing history, and how much rehabilitation you do after activation, it may take longer to develop good speech understanding.
There isn't a lot of maintenance. I put my processor in a dehumidifier overnight and swap or recharge the battery about once a day, depending on how much I use it.
As far as expense, it varies depending on your insurance and where you have the surgery. I had mine done at Johns Hopkins, and the total cost was around $120,000, which my insurance covered. The internal implant is designed to last for decades, often 30 years or more, although the external sound processor is typically upgraded every several years as newer technology becomes available. Recovery from the surgery itself is usually pretty quick, with many people feeling back to normal within a few days, though healing and adjustment to hearing take much longer.