Is a CI the right decision

I’m curious. How does music sound to you? Do you have 2 CIs and if not why not? Most people who I have met who are deaf from birth (congenital) have 2. Why would you look to improve hearing there as well.

I am very interested in understanding your experience more. I gather the sound you hear is not the same (“understand the sounds”) as natural sound, yet you say you are able to hear things you couldn’t hear before. Like what?

What is the nature of the “learning curve”. That also sounds like getting use to associating a different sound in a specific situation for what you hear before

@jcech music to me is no different than before surgery. I still enjoy it as much. Maybe this is because I’ve retained all my residual and gained some as well. Also because I’ve got a hybrid EAS attachment to my CI.

I was born 7 weeks prem this is why my L ear is profoundly deaf in high frequencies. My surgeon couldn’t explain why only the L ear was affected. As I’m nearly 70 he didn’t think surgery would be a good option for my L ear as it hadn’t heard high frequencies for 6 + decades. So he did my R ear which had a SSHL only 2 years earlier pre surgery.

My surgeon has said if/when my L ear deteriorates they will then do a CI if an aid doesn’t give me good hearing. But he won’t guarantee any success rate though.

When you can’t hear to talk on the phone, can’t take phone messages from Drs at work, can’t hear well enough to be included in conversations, going into noisy situations and trying to hear. All this impacts on your life, I had to retire from work because of my hearing, I knew then I had to do something.

For me, I understood speech at activation, but struggled with environmental sounds. I couldn’t hear any sounds from inside the house, eg fridge microwave, washing machine etc. couldn’t hear any sounds inside the car either. Couldn’t hear any of the emergency vehicle sirens either pre op.

After the CI all these sounds were slow to appear, about 5 months post op I started hearing them. I drove my partner nuts asking what’s that noise if I couldn’t find it myself. Birds tweeting is music to my ears, as I haven’t heard them for so many years now.

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Thank you for this reply. I guess as a technical person I am use to asking why when I am told something that I don’t understand. I have had enough instances where there was no reason, just past practice. They often ignored better options.

I am a big believer and supporter of work done on hearing restoration which I feel is the ultimate solution to hearing loss. Vision correction has accomplished this a long time ago yet the technology continues to improve (glasses -> contacts -> implants).

Hearing restoration is much harder, but I have no doubt it will come also as the genetic mechanisms for hearing become known. (hearing aids -> CI -> gene therapy??)

When the audiologist first activated my cochlear I thought the speech I was hearing was from the computer. I would see everyone lips move but there wasn’t any sound for a couple seconds. At first I couldn’t understand what they were saying but it clicked when I heard me telling them that I cant understand what was being said. That was the first moment I started to understand speech thru the implant. Within a few minutes the lip movement and sounds matched up. I could understand what was being said fairly well from the start.

The sound of someone talking is still different but the voices are pretty much the same. What I mean by that is when people talk it almost sounds like someone that uses a larynx device to talk. The voice is still the same but is electronic. I hope that isn’t confusing.

It took some time and patience to figure out the environmental sounds. I went to my daughters basketball game and kept hearing what sounded like wind chimes. My wife helped me figure out that it was the shoes squeaking on the basketball court. Now that same squeak sound is what I remembered it in the past. Some sounds it took some time to figure out what they were.

Recently, I visited my aunt and uncle, who have a water fountain in their front yard and this was the first time I ever heard it. I have gone over there numerous time over the past fifteen years and never heard the water splashing in the fountain. I started wearing hearing aids about 4 years ago and didn’t realize my hearing was as bad as it was. Even with the hearing aids I could not hear the water fountain.

Another sound I heard recently was crickets chirping. I cant remember the last time I heard crickets chirp before. So when I hear these things again I get excited. Unfortunately, my family thinks I’m kind of weird because I get excited about it but who cares.

On a side note, I go in for my other implant on Thursday. I am both excited and worried. The reason I am worried is because with the hearing aid people sound natural. Once I get the second implant, everyone’s voices will be distorted. The upside to all of this is my overall hearing will greatly increase since I do get very little benefit from the hearing aid.

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Thank you for that informative post. You are another member that has shared a positive experience from your CI. It’s pretty amazing how our brains can take noise and turn it into understandable sounds.

When posting about CI’s it sure brings out the nay sayers. There will always be people who procrastinate and make excuses. You have done great. Congratulations
Now it’s time for me to stop procrastinating.

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Good luck. :slight_smile:

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I am bi-lateral CI user About 10 years on right side in which I had no hearing and five years on the left which had deteriorated to 12 words recognized out of 100 while wearing the hearing aid in the sound room with no other input. I now have an average of 97 words out of 100 using both processors and 99 on my right side alone. I have Cochlear 6. If it were me I’d check out the three companies and get on with it. Is my hearing normal no-noisy enviroments, people with dialects are a major challege. Having the option of having the phone and TV blutooth streamed to both ears simultaniously is incredible. Now I can do things like wash dishes and hear the TV perfectly from anywhere in the house.
Here in Tucson we have all three manufactures that rent our conference room one afternoon a month and meet with inquirers, those in the process and recent recipients. Our weekly discussion groups provide great peer support as well as our Monthly Cochlear Connections group. I understand this level of education and support is not available anywhere else in the US.
The techology has greatly improved and the surgury is much less invasive and safer–i.e. The MRI question is much easier and safer. The connectivity to the I-phone as a remote must be awesome–I’ll get that with my next upgrade.
As President and active member of ALOHA I talk with several CI prospects and Wearers and see them through the process. The process and results are unique to each individual. When I had m;y first implant there was only one surgeon in town that did them–Now there are five. I have never met a person yet who regretted the decision. The adjustment phase is different for everyone. After an adjustment process speech sounds very normal–with music program I can pick out melody–which I had not been able to do for 30 years. I am now 85 and hear as well as I did at 25

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The difference can be amazing, I was only activated a couple of weeks ago, and I have already decided that even if it gets no better I will do the other ear.

Also thanks for the larynx box description, that is the best comparison I have heard of and I hadn’t thought of it.

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@eniveparg all the very best going bilateral on Thursday. I hope you have great success with your second CI as well. :four_leaf_clover::four_leaf_clover::four_leaf_clover:

It’s a sad state when people from the deaf/HOH community On this forum can’t support another member on this board. Especially when whoever is taking a Huge leap of faith and getting a CI. Another man is getting a CI in a couple of days. I’ve been communicating with him via pm. He got the negative :-1:t5: people criticizing him also, and hadn’t been back. As did I, if you can’t wish us all the best in our new hearing journey just scroll on buy. It’s such a huge decision to make and to get all the negative criticism is unnecessary and plain hurtful.

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There is a certain segment of the population that sees it as the death of their culture but the truth is that’s not the case, and someone looking at a CI was probably never a part of their culture to begin with. They see it as it meaning they’re broken, but that’s not true either. We are all just individuals trying to make our way through the world, we shouldn’t be taking time out of the day to shit on others no matter the perceived slight. We are all human, we all struggle with different stuff. Today I struggled to hear some, but I am still here. A friend of mine and former colleague isn’t, and that’s a shame. She lost her fight on Friday.

So we all need to get over ourselves, support each other, love and high five each other in our triumphs and hug each other through our losses and get on with our lives and try to make each day better than the one before.

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How does the CI effect tinnitus?
I have very bad tinnitus in both ears.
I have read about this some but haven’t really gotten a straight answer.
Thanks for your help.

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@Raudrive I had tinnitus pre op very mildly, it was caused by my SSHL. After my CI it was still evident I had tinnitus, but 9 months on I can barely hear it in my CI ear or when I remove my processor.

BUT and it’s a very big BUT, everyone is an individual and different. The surgeon gave me no guarantees at all. Some people find its 80% better others no improvement at all. It’s simply the lap of the gods, it could be better, worse or no change is the answer my surgeon gave me.

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Thanks for that info. That’s similar to what I have read too.

This bothers me some. My tinnitus is very bad.

@eniveparg Between work and doctor appointments I missed your post that you were receiving the other CI. I think you were still waiting insurance approval. I hope that things are going well for you. Congratulations on your second CI! I know it will be a few weeks before this one is activated, but you handled the first one well and I have confidence this will work out for you too. Please update us on your progress and thanks for sharing your experience.

My insurance approval came earlier this week. I’m scheduled for the implant in my right ear on 3/12. This coming week are my pre-op doctor appointments. My healthcare team has to work together in my case because I’m a type 1 diabetic. The anesthesiology guideline require pre-op bloodwork, physical, and since I had a heart attack in 2018, my cardiologist has to take an EKG, and give me clearance. I’ll have to stop my blood thinner at the end of this upcoming week and the baby 81mg aspirin 7 days before. The my endocrinologist has to give me information on my insulin dosing through my insulin pump. Surgeon has already reviewed the MRI from late December. So pretty much, things are running on schedule. Am I nervous? Yes. Am I scared? Yep.

All this from a veteran of 3 vitrectoies (eye surgery), two cataract extractions, several eye laser procedures, broken leg surgery, and cardiac invervention with two stents. Yet I’m worried about CI implant surgery.

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The surgery went well. The side effects were completely different with this surgery. I had severe balance issues for a few days following my last surgery. When standing I would lose my balance out of no where. There was less pain with this surgery but more bleeding coming from my ear.

I have come to realize I have absolutely no natural hearing anymore. Which scares me some. As long as I have my cochlear on, I’m fine.

Good luck on your surgery. I am sure you won’t regret it.

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Thank you again for this informative post.

Your comment about losing all residual hearing is an eye opener. Did you have tinnitus before your CI’s? How about now? The thought of actually not hearing anything is pretty exciting. That comment probably sounds strange but the possibility of no more tinnitus is exciting.

Keep us posted.
Thanks

How much hearing is retained is very much dependent on a number of things. My residual changed very little after implantation. And since tinnitus is probably much more of a nerve and brain thing, even if you loose all hearing you might still have tinnitus.

Sorry.

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I’ve had tinnitus longer than I can remember. Probably close to 30 years now. It did get better after the surgery and the surgeon did say they would hope it would get better but they cant say for sure since there isn’t a way to measure tinnitus.

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