Hi, I’m wondering if anyone here has a progressive, genetic, bilateral sensorineural loss? I am extremely interested to hear from anyone about their hearing aid to CI journey. I’ve gone from a mild-moderate loss as a child and very gradually down to severe level now at age 38, I am probably facing profound deafness eventually. My analogue aid helps me immensely and I get by ok, however I am considering a CI because I am worried that in the next decade or so I will lose my residual hearing. Is there a point when hearing aids will no longer help, is it better to be implanted BEFORE this occurs, do CIs sound natural, robotic, unusual? I have so many questions and thoughts in my mind and I don’t know anyone with a CI so I feel rather lost right now. I only wear one aid as my other ear has very poor speech discrimination (20-30% at 90db)and with an aid in that ear, it’s just awful noise. Speech recognition in my good ear is 90% at 90db.
I’m traveling this road at the moment. Also asking the same questions. I have bilateral severe profound sensorineural loss. My L ear is probably congenital so the CI ENT tells me. My R ear only about 3 years now. From what I understand from my research the CI does have a “robotic” or “Donald duck” sound. You have to do heaps of rehab to retrain the brain to hear again after the op. They do say you get used to the difference in the balance. I will only be bimodal also and the imbalance from normal to robotic is a concern for me. I’ve just about reached the stage where hearing aids don’t go much for my hearing. In fact some days they are useless. If you are a member on FB you will find lots of CI pages in the US and Aus.
Can I suggest a blog for you to read? The blog is titled “More Than A Bit Deaf” and it’s written by a lady who has been on this journey and is still on this journey.
Thank you for your reply, I don’t have Facebook atm but I will write that suggestion down for when I do have it again (currently deactivated, I waste too much time scrolling through it otherwise!) I am already taking NOTES, questions and suggestions down for when I have an appointment with my ENT. Such a huge decision!
Hi, thank you for that suggestion, I just read a few of the articles she wrote at the beginning of her journey and it was very positive and helpful! I will bookmark that site
@dhoz I’m booked to have my CI in a couple of months. It’s scary stuff, not knowing all the answers. I have a list of questions 20 long for both the CI Aud and Surgeon…
I am 65 yrs old and sadly have learned the old saying is valid: “Use it or lose it”. When I was younger in my teens, the audiologist of the day determined that it was best to move my aid from my stronger right ear to my weaker left ear under the assumption that it will “reinforce” the weak ear. Now 50 yrs later, my right ear is completely non-functional due to lack of a hearing aid. My left ear is all I have left and I’ve been using it as my main “ear” with an aid and although my hearing has dropped due to age, modern digital aids have far surpassed my expectations and am conducting meetings with groups of people.
My point is this: if you have residual hearing, wear a hearing aid and you will not “lose it”. Going to a CI at my age meant that the CI will have to be installed on my “good ear” meaning that if the CI does not work (it does happen!), I’ve lost ALL of my residual hearing as I only have one good ear left.
So, if you require hearing aids in both ears, get both aids and you may have many, many years of hearing with the help of modern technology. The technology 60 yrs ago was downright old! I started with a body aid.
Ultimately, it is your decision and going over to a CI is a major decision and the only drawback is the possibility that it may not “take” or you don’t like the “Donald Duck” quacks, then you cannot undo the CI and you’ve lost the only residual hearing you have left.
Good luck on your journey!
There is another (success) story of a coclear implant. The author has posted this link on hearingtracker, too.
Thanks I’m glad you liked it. I’ve had a couple of discussion in the past about the possibility of a CI, but I just don’t fancy having someone drilling a hole in my head. besides which I feel I belong in the deaf world, even with a bit of residual hearing.
Thank you, I am getting my Right hearing aid set up next month. When I was 10, the audiologist told my parents there was no point wearing the Right aid as my speech discrimination was so poor. So I have just worn the Left aid for the past 28 years! Sadly, I now understand that the audiologist was wrong and that the Right ear can actually help me with environmental sounds and fill in some gaps with speech. So here I go, time to attempt to hear on that side again!