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Cochlear Implant Activation--SSD

Discussion in 'Your Living Room' started by Kevinb003, Dec 5, 2019.

  1. Kevinb003

    Kevinb003 Member

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    Thank you all for the kind words...it's really awesome to be making progress against this beast instead of being at the mercy of it, since my biggest fear after the laby was becoming totally deaf. I now know that that is no longer a fear!

    Joe, that is great news and I wish you the best in whatever you decide to do! I have no vertigo in my "good" ear as my neuro diagnosed me with cochlear hydrops as opposed to the endolymphatic hydrops I had in my laby ear. I perform physical and logical security audits of company's where there is a national security concern mandated by the Federal Government. When I'm not traveling on business, I work out of my home. At times, conference calls can be a challenge, but the ability to control external distractions because I'm at home is very helpful. Eventually as I get better with the CI, I will be able to stream phone calls directly from my cell phone to the CI via Bluetooth, so any compromised hearing in my "good" ear won't even be a factor.

    Redwing, yes, an implant with relatively good hearing in your other ear can be a good choice, but it also requires pretty rigid discipline to practice with it and wear it all the time. Human nature being what it is, it's tempting to not wear it because you are hearing fine out of your good ear. I can't tell you how long you should wait, but I can tell you I'm glad I decided to go through with it. I feel so much better that I am proactively addressing the issue instead of just waiting around hoping I don't lose the hearing in my "good" ear.

    As a musician, the past 15 years have been very difficult for me. I had to stop performing because of the vertigo. When I had the laby almost 6 years ago, I could enjoy music again because my hearing wasn't distorted or pitch shifting. With my good ear having issues lately, I came to the realization that I will never hear music the way I used to. That took a while to get over, but eventually I realized my ability to communicate and make a living was much more a priority and I stopped feeling sorry for myself and took control of my hearing for the future.

    Sorry for being long winded, but I enjoy sharing this because I feel it's the least I can do to pay it forward. Again, wishing all of you happy and symptom-free holidays!
    --Kevin
     
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  2. California Sun

    California Sun Active Member

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    Kevin--thank you for your posts. I hope that the CI is something I will not have to consider in the future, but it's good to hear about it from someone who has had the experience.
     
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  3. PleaseNoDizzy

    PleaseNoDizzy Member

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    Another THANK YOU Kevin, for sharing your experience along the way. It's really enlightening, and also reassuring.
     
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  4. Mr. Tom

    Mr. Tom Member

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    I was evaluated at Mayo Clinic in Rochester, Mn for a cochlear implant, but was told I wasn't a good candidate. I have (as of last hearing test) 0% speech recognition in my right ear and 78% at 80db in my left ear. I have hearing aids, well one is, the other just transmits sound to the other one. I hope you have great luck with your implant!
    Tom
     
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  5. Kevinb003

    Kevinb003 Member

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    Tom, how long ago were you evaluated? Just this year the FDA approved implants for single-sided deafness. It may be worth another shot if your evaluation was a while ago. --Kevin
     
  6. Clare

    Clare Active Member

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    Yep, Kevin, the recent hearing test showed my good ear has not declined in the year since my laby, and I haven't had any indication of bilateral involvement. My surgeon explained that patients whose good-ear hearing has declined enough that it feels helpful to rely on the CI have better success at learning to adapt to it. At this point a CI would likely help with sound location, but not if I didn't bother to use it regularly because my hearing is good enough without it. He would, however, be willing to do the implant if I still wanted it (and could pay out of pocket, as medicare doesn't cover it).

    I had a bone-anchored hearing device (BAHA) implanted at the time of my laby. I have to say, the laby surgery healed readily and is unnoticeable now. Not quite so easy with the implant, though. Basically, a hole is drilled into the skull and a titanium piece is screwed in. But bone doesn't heal in quite the same way that skin does, and a piece of titanium doesn't bond to bone, nerves and tissue as readily. My healing has been relatively good, but still I sometimes get mild aches that radiate from the implant to the top of my head, which I understand is just a normal part of nerves and bone getting along. And sometimes there's a touch of tenderness around the implant, perhaps because some irritant got between titanium and skin. Some extra-attentive cleaning usually clears that up readily.

    I bring this stuff up just to let folks know that getting an implant of any type is not a "nothing" kind of surgery. It requires some ongoing maintenance. I didn't understand that before getting my BAHA, and concerned myself only with the laby healing; not the implant. Being now completely deaf on one side, the ability to locate sound would greatly enhance my comfort in social situations. It would allow me to distinguish conversations from background noise and be able to follow what people around me are saying. If medicare covered CI, I would be considering CI more seriously than I am now. And if my good ear declined or gave indication of bilateral involvement, I would definitely be a CI candidate.
     
  7. redwing1951

    redwing1951 Well-Known Member

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    Clare it is my understanding that Medicare does pay for CI in patients with single sided deafness. I believe it was approved in 2018.
     
  8. Mr. Tom

    Mr. Tom Member

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    Kevin, it's only been about three years ago that I went to Mayo. They said the hearing in my 'good' ear was the reason for denial.
     
  9. Clare

    Clare Active Member

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    Hmm. According to my surgeon, the FDA approved the use of CI in SSD adults, but Medicare hasn't yet stepped up to cover it. I haven't contacted Medicare myself about it. The out-of-pocket cost at Mayo is about $70K.
     
  10. Clare

    Clare Active Member

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  11. California Sun

    California Sun Active Member

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    This is kind of a weird question but how does the implant affect the washing/coloring of one's hair?
     
  12. Kevinb003

    Kevinb003 Member

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    @California Sun, the implant has no effect on either of those activities as the magnet that the processor attaches to is under the scalp skin--that is the only fitting/connection so nothing protrudes out of the scalp to connect to the external processor. I washed my hair two days after the surgery, and I actually had a haircut today with #2 trimmer on the sides and it was no different than pre-implant. Hope this helps.
     
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  13. Kevinb003

    Kevinb003 Member

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    Another update as to progress here...I had a mapping session yesterday and things are progressing well in my implanted ear. I wish I could say as much for my "good" ear, but that one has gone south: roaring tinnitus, pitch shifting and hyperacusis. Trying to stay focused and positive with the implant. I'm amazed that I can actually understand speech through the implant only five weeks post op. To be honest, most of that comes from streaming and the devices you can get with the implant. One, in particular, is a device that is kind of like a polycom for those familiar with conference calls. you can place it anywhere and it picks up sound and voices and streams it directly to the implant processor. It's not obtrusive as it's about the size of a silver dollar. This has really been amazing with TV as I can connect it to the optical audio output of the TV or put it close to the TV speaker and hear the television directly to my implant. Voices are still a bit distorted, but it gets better with each mapping session. Again, the fact that my brain can actually make sense of speech through the implant truly amazes me. I think I am getting better with echo location, but I'm told that vastly improves with two implants. The biggest challenge is still background and ambient noises...they are so much louder than speech and can be distracting. I'm told that the brain will learn to figure that out and begin to filter it as our normal hearing used to do. All-in-all I can't say enough how happy I am that I chose to do this and how much I believe it will help me in my personal and professional life. As always, happy to answer any questions you may have! Take care and I hope the beast is troubling you as little as possible. --Kevin
     
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  14. redwing1951

    redwing1951 Well-Known Member

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    Kevin I am doing the "happy dance" for you!! This is such great news not only for you but so encouraging for me when the time comes. I wait patiently for your updates. Thank you so much!
     
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  15. Bulldogs

    Bulldogs Well-Known Member

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    Hey Kevin
    Wonderful news my friend. This is the same sort of trajectory that Sid has indicated to me on many occasions.

    praying for your continued success.

    I did have one question and that was what type/brand of Implant did you decide on and why?

    joe/BD
     
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  16. Kevinb003

    Kevinb003 Member

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    @Bulldogs, I went with Advanced Bionics and have the Naida CI 90 processor. My decision was mostly based on the potential for possible music enjoyment with their HiRes Fidelity 120 software because I am a musician. It’s my understanding, though, that there is no bad product out there and all three manufacturers are very close to each other with technology and reliability. For a lot, it comes down to features and accessories.

    Thanks again everyone for the support! —Kevin
     
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  17. Wayne

    Wayne New Member

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    I have had my cochlear implant for a year and a half now. I can't imagine life without it. Before the implant I only understood 7% of what people were saying to me in my left ear. At first everything sounded like either a robot or one of the Chipmunks! But my other ear was able to train my brain what those noises are and now I can even enjoy music again with just the implant (Not 100% though). If you qualify, I can tell you it has really helped me. Especially now that I have one that is rechargeable instead of keeping the battery manufacturers in business. I chose the hearing piece that only attaches to the implant and does not hang onto your ear. Nobody even notices it unless I point it out.
     
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  18. Clare

    Clare Active Member

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    Wayne, how did you choose the type and brand of CI? Can you locate sound now?
     
  19. Kevinb003

    Kevinb003 Member

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    Back again with another update...had a mapping session today and the audiologist performed a hearing test in my implanted ear for the first time since activation. Hearing in my "good ear" is still crap so it was easy to plug so that I didn't hear anything out of it, which would compromise the test of the implant. Basically, the same type of hearing test we always get...say yes when you hear the tones, repeat words ("say the word: hotdog"), and finally, repeat short nonsense sentences. After it was finished, we went back to her office and I joked, "That was pretty bad, eh?" She said, "No, quite the contrary, you scored 36% on word recognition and 57% on sentence recognition." Now to put that in context, six weeks ago prior to activation I would have scored 0% on each being that I was completely deaf in that ear! This is a small step, but it was just the shot in the arm that I needed now that I can't rely on my "good ear". I still have a long way to go, but it's working...it's really working! As always, happy to answer any questions anyone may have. Hope everyone is having a good day!
     
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  20. Bulldogs

    Bulldogs Well-Known Member

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    Hey Kevin
    That is absolutely wonderful news....praying for your continued success and improvement.

    as your so called good ear is going south I was just wondering what the plan would be if the violent life altering vertigo returned. Would you go for another laby/ Cochlear implant combo? Has that scenerio ever been discussed with your OTO?

    keep up the great improvement my friend.

    joe/bulldogs
     

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