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Hello Everyone:

 

I think this site is awesome first off. Everyone on here is so helpful! I have been trying to decide if a cochlear implant is right for my son and if it is it will definitely be Med El. I like the idea of the Rondo and the fact that their electrode is the best in the industry at preserving residual hearing. Plus like I said this is a great community.

I will first start with my sons story. Cooper was born and he failed his newborn hearing screening in his left ear. We were told that it is common to fail and that it could simply be fluid in the ear. A month later we returned and failed in the the left ear again, but the right was perfect. We were told to give it a little more time and check it again. Two months later we went back and got the same results. They found in those tests that his right ear was normal and his left ear could hear about half the sounds. They told us to start the process of getting a hearing aid, but if he didn't use it he would be just fine. We got him a hearing aid but it didn't seem to help. Our ENT and our audiologist kept telling us that with half hearing and a normal ear that he would develop just fine and that his hearing wouldn't effect him. He didn't walk until about 19 months has some balance issues and he can't locate sounds. He can speak very well and is a very bright child. We have noticed that he struggles to hear in noisy environments. At three and a half years old and after trying hearing aids for him that didn't work they decided to do another hearing test. His right ear was still good, but his left ear had gotten worse. We were then told that his hearing loss was now profound in his left ear and that a good option might be the BAHA or CROS systems. Our ENT also told us that we didn't have to do anything if we didn't want because he has one good ear and he will be just fine.

When my wife and I found out his hearing had gotten worse we started doing a lot of research. We found out that the CROS and BAHA system still wouldn't help with localization and that it might overwhelm his good ear in a noisy environment. We also found that people with one ear struggle in noisy places and tend to withdraw from social settings because of this. Plus they tend to get wore out trying to hear all day. We decided to get a second opinion at that point. We went to Mayo in Minnesota and the audiologist there found that he had no hearing at all in his left ear. They think he never did because they masked his right ear so it couldn't pick up any noise. My wife and I could hear the beeps across the room and he didn't hear a thing. The audi said they hadn't masked his other ear at our hospital and so they believe he has never heard with his left ear. The doctor and audi at Mayo believe the best thing for our so is to get a cochlear implant. After doing a lot of research and getting a lot of info off this site, I also believe this is the right decision. They said it might be hard to get insurance to cover single sided deafness with a cochlear implant, but they will do their best.

After that long winded story I guess I was just wondering if anyone could speak to what it is like to hear through a CI. If you are SSD yourself or if you had hearing and lost it. I think and hope I am making the right decision. I just don't want my son to be mad at me later if he doesn't like it. Thank you all for your time and any kinds off comments would be appreciated!

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Hi Troy,

 

I am currently in a similar position with my daughter.

 

Can you please let me know if your son has had the CI implanted?

 

If so - how did it go?  Did you end up with the Rondo?  How is that going?

 

Any info you can share would be appreciated.

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To both of you considering options about Single Sided Deafness for your children you should know a few things. As a person who has struggled with having unilateral deafness myself and has received a CI, I would recommend it far above the other options available for your children. The cros and B.A.H.A. systems cause the individual to rely more on the only ear that currently functions. With the Cochlear implant though they will have the ability to know what side sounds are coming from and not put more pressure on the functioning ear. Try to get a CI at an earlier age because that is when a person has the most neural plasticity (the ability of nerves to change and adapt as needed). Having Single Sided Deafness or Unilateral deafness does affect a person during their lives especially in the social realm. People do not understand why you have such success talking to others face to face, but have difficultly in crowded situation and may not even know to respond if someone walks up behind you on your deaf side and starts talking. The doctors who tell you otherwise are either very ignorant on the subject or very big jerks. If you have their contact information I would like to talk to them and set them strait so that others do not have to go through some of the same struggles that I and others have been through on this subject!

 

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I was also born with single-sided deafness and can attest to the difficulty in social situations. Everyone, including audiologists and ENTs over the years, have disregarded the need for intervention. At 58, I switched to an ENT who did a thorough neurological workup and determined that I was no longer a good candidate for a BAHA or other surgery due to my age and the length of time I have had the loss. I use a Phonak CROS system and love it, although localizing sound continues to be an issue. Fatigue from working at listening is real. I do presentations in my career, but it took a long time for me to get comfortable since the loss makes you tentative. Not being able to locate a person asking a question can be embarrassing. Now that I am older, I am comfortable mentioning my loss. The bottom line - unilateral hearing loss is real and should be addressed.

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Beverly,

My deafness started single sided in my early 20's. I also was fitted with the cros system from phonak. I loved it as well. I talked to a few other people who tried it and said they hated it. My Audi said that you are either going to love it or hat it. I wasn't fond of the cable connecting the two but in the end, wanted to hear. A few years after that , my left side was unaidable.

The technology that is out there these days is amazing, I know each person is different but when I found out I was a candidate for a CI, I jumped at the chance. Having the surgery in my mind was a non issue as well. These doctors perform these surgeries so often, they couldrobab.y do it in their sleep. :D)

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Adam - you reminded me on my episode: when I found out also that I might be a candidate I said yes even before I have thought what this really means.

Operation was piece of cakes (ok, I am subjective at this matter  :lol: ), but habilitation was something what put me in front of some questions which I'd never expected.

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I totally agree

I also think we can both say it was all very much worth everything to get where we are

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Of course - this means you should never be tired of asking questions and reminding what's wrong with your hearing, your devices, how this, how that...?

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Exactly. Too many just take what the doc or Audi says and never ask a question. I think we are seeing more and more people ( at least in U.S.) get more educated about their situations

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Well, Google makes miracles at some points, but on the other - not all informations are 100% correct. But, of course, it is better that people know more than less.

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Yes, the Internet can be a blessing and a curse. We have access to much more information but not all the information is accurate.

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And we have to be aware of that... So many people told me when they come to my practice: But I have read this... or that... or... 

I can't lie - it is frustrating when I am trying to persuade them that it is not just like that... :(  :huh:

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Hello, 

I know this is a bit late to the first post. I too was born deaf in my left ear 29 years ago. I had my 3rd surgery earlier this week and now I am able to hear. It hasn’t been a week yet but as exciting as it is to hear it’s so overwhelming. I didn’t realize how this would affect me. I can’t function normally in life and I barely want to leave my house because everything is so loud. I’m wondering if anyone has had a similar experience and had any resources for me or how your children coped with it. Thank you. 

 

Andrea P. 

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