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Cochlear Implant Activation--SSD

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

  1. Kevinb003

    Kevinb003 Active Member

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    Hi everyone, just wanted to bring you up to date on my progress with the implant. I was successfully implanted last Wednesday and the implant was activated yesterday. It's quite an overwhelming process as there is so much thrown at you at once, what with all the new technology combined with hearing sounds from that side of your head for the first time in many years. Right now I am doing a lot of rehab streaming from my phone directly to the implant processor since that bypasses my good ear. It's a lot of watching you Tube video with captioning turned on to try to train the brain that what it's hearing are actually words and not just miscellaneous, garbled noises. Initially, voices sounded like adults in the Charlie Brown cartoons, but I've noticed progress just in the past 24 hours since the implant has been active and I anticipate further progress as I am determined to make this work the best it can! Please don't hesitate to reach out if you have any questions regarding all of this. If you'd rather PM instead of posting to/adding a thread, feel free; however, if we keep it in the threads, it's searchable for future members who may have the same questions.

    Thanks for all the kind messages of support!
    --Kevin
     
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  2. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    Hi Kevin,
    I’m so glad the implantation went well and so curious about what real life usage is like for you, still with one good ear. I had a laby in 2018 so I’m SSD as well. I know it’s very early days for you but what’s the experience of hearing things with the implant and good ear at the same time? Does it make speech harder to understand than with the one ear only? How is it affecting your ability to “echo locate” a sound source?

    be well and keep us posted!
     
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  3. redwing1951

    redwing1951 Well-Known Member

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    Great news Kevin! I love your positive attitude and look forward to your posts going forward.
     
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  4. Kevinb003

    Kevinb003 Active Member

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    I can't provide much of a response this early regarding your questions, @PleaseNoDizzy, but I will keep them in mind and try to update as I progress. At this time, the sound level isn't really turned up enough to be useful in conjunction with my good ear. Audiologist gave me 10 programs that increase in volume incrementally--I hope to be on #10 by the time I see her again in 2 weeks for more adjustments. Where I see the most progress is streaming music and you Tube videos directly to the implant's processor. I found I could actually hear the lyrics to songs and understand the words. I think the brain fills in what it knows is missing, but I swear I could understand some of the lyrics on day 2 of my activation. In my book, that's pretty amazing. As my programming develops and the loudness increases, I will let you know about echo locating and comparison to real-time hearing in the implant vs the good ear. Thanks, Kevin
     
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  5. Bulldogs

    Bulldogs Well-Known Member

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    Hey Kevin
    thanks for the updates, as someone considering a CI in my deaf laby ear this is an important thread.

    Praying for your success and look forward to your updates

    Joe/BD
     
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  6. Rebecca

    Rebecca Member

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    My brother just recently had an implant and is experiencing the same progression as you. I am so very happy for both of you that there will be a time when the implant will be fully functional and bring a better quality of life!! Please do keep us updated as you progress through this. God bless!!
     
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  7. Rebecca

    Rebecca Member

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    Bulldog, if you had a laby, and are considering an implant, I take it the laby did not take everything? I've read that a person can choose to leave the cochlea? Could you please tell me if your laby relieves the fullness and pressure in that ear? Also, how are you doing with balance since the laby, and how long of a recovery was it for you? I've been so miserable with fullness, pressure, discomfort, and brain fog continual for almost a year. I've had MM for over 20 years and was really sick for a long time. Diet, water pills, chiropractor helped bring things under control, until Jan. I'm not having full out vertigo attacks, but everything else is making my life basically just an existence, so I'm considering looking into a laby. My brother just had a cochlea implant, and I was thinking it might be something I could consider, as my other ear is now experiencing tinnitus and hearing loss. Any information you can provide will be helpful. Thank you!!!
     
  8. redwing1951

    redwing1951 Well-Known Member

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    Hi Rebecca I know you are asking BD about his journey and he will answer you. I just want you to know that I had a laby 7 years ago and it was the best decision I could have made. I am now a candidate for a cochlear implant. My experience after the laby has been very good. I still have tinnitus which is tolerable unless I am in a very loud environment. The louder the environment the louder the tinnitus. As for fullness in the laby ear I have experienced mild fullness during barometric weather changes. Nothing like what I had before the laby. My balance is perfect except in pitch dark environments. So I make sure there is a night light on in the evening. My OTO explained to me prior to my laby that the goal is to end vertigo and if you are fortunate enough to get rid of the other symptoms "it's icing on the cake". I feel like I received icing on the cake.
     
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  9. MaryR

    MaryR New Member

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    Congratulations Kevin! Sounds like you are on the road to great things, and your hard work with the exercise and motivation will certainly pay off!
    Thank you for sharing your experience. I’m in an earlier part of my Menieres journey, where I haven’t begun to seriously explore the laby option quite yet, but it is so reassuring to know that the CI is a possibility if I do eventually go down that route.
    Keep up the positive attitude and dedication hard work! You are an inspiration!
     
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  10. MaryR

    MaryR New Member

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    By the way, do you mind sharing what part of the country you are in and who is following your treatment, and who did your laby? thank you!! I’m willing to travel anywhere to find a team of doctors I can trust and truly believe in. Unfortunately, I haven’t found that yet.
     
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  11. Bulldogs

    Bulldogs Well-Known Member

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    Hi Rebecca

    What Red said was right on with me as well. I believe everyone does the laby now and leaves the cochlea intact in case you need it one day.
    Balance is perfect as I approach 50 on Feb. 3. buy I stay active with 3 kids and a wife that does not tolerate me just sitting around.
    No symptoms except slight tinnitus I usually only notice at night in quiet time and it can get louder as Red said in noisy environments but always subsides.
    If it came to it I would do again in my other ear and get in with life....life with spinning vertigo is no life to me with my head in a bucket housebound full o fm anxiety. Yes fbi had to use a cane or walking stick or even an electric scooter so be it....I want to enjoy my kids and one day grandkids, travel ect.....

    like Red said my laby was a lifesaver and gave me back my life. I had no life with unpredictable vertigo.

    Merry Christmas
    If you ever want to talk about my experience just call me and leave a message and I will get back to you asap.
    (404) 408-3515

    god bless
    BD/Joe
     
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  12. Kevinb003

    Kevinb003 Active Member

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    @MaryR, I am in the Dallas, TX area and am serviced by Dr. Hahn at the Dallas Ear Institute. I like it say he gave me my life back almost 7 hears ago with a laby, and now he has given me, potentially, the hearing back in that ear. I can't say enough good about him and the entire team there. Best of luck! Feel free to PM me if you have any specific questions.
     
  13. Clare

    Clare Active Member

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    Kevin, what concerns were there with doing the CI after having a laby? I talked with my laby surgeon a few weeks ago about CI, and he mentioned some possibilities of scaring from the prior surgery that may need to be worked through. Did you get any more info on how scaring may have been a concern in your surgery, and if it had any impact in the procedure?

    I know you went through the whole laby recovery thing to a better life, and I'm guessing you're in the similar pits of early recovery with your CI, having to do the whole train-your-brain thing. It's gotta feel crappy for you, but still I find myself just a little envious. I'm wishing you a steady learning process and many little joys along the way.
     
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  14. Kevinb003

    Kevinb003 Active Member

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    @Clare, great question! Yes, in fact, that was discussed as a possibility and it did, in fact, happen. According to my Dr. there was a lot of scaring to deal with, but the only effect to had was to increase the length of the surgery since he had to deal with it. There was no impact on him being able to fully insert the electrodes into the cochlea. Side bonus: I didn't experience the common side effects of vertigo or dizziness because the balance center (labyrinth) already was missing from that side =P. Hope this helps! --Kevin

    P.S. Don't be envious, just get the process started if you think it's best for you! After the experience I had this past summer of being at a work event and not being able to understand voices because my supposed 'good ear' decided to show the craziest effects it has since going bilateral, I had to pursue this with vigor.
     
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  15. redwing1951

    redwing1951 Well-Known Member

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    Such good information Kevin. I am close to pursuing an implant. I have had two occasions where my "good" ear has acted up this year. I am fortunate to live near Mass Eye and Ear where I will receive the best care. My OTO says the implants have greatly improved and continue to every day. I look forward to your posts thank you!!
     
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  16. Kevinb003

    Kevinb003 Active Member

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    Here's another update...

    I had my first post-activation mapping session yesterday (December 18, 2019). For now, this consists of leveling each frequency to tolerance (think of a graphic equalizer in musical/stereo equipment). There's actually quite a bit of nuance here because not only are you adjusting each frequency--think low (bass), midrange, and high (treble)--but you're also focusing on how those adjustments all work together. This isn't even taking into account yet all of the other software programs available on the processor (more on that later, I'm sure!). I can't provide much in the way of echo location yet, but I feel it's coming because since the implant is not 'real' hearing, I know that when I hear something that's predominantly processed and has higher frequencies, it's definitely coming from my implanted side. I drove home from the veterinarian today, listening to NPR and I could distinctly understand the words being spoken in my implanted ear (had "good" ear plugged), Female voices sound like Mickey Mouse at the moment, but I'm told that will get better as my brain adjusts.

    Since I do work full time, I can say that it is challenging at times to put in the work of streaming audio to force the brain to understand this new input when you have "good" hearing in the other ear. But like @redwing1951 mentioned previously, my "good" ear has acted up this year and currently started doing so last week, therefore, that has motivated me as well! My next mapping session is in two weeks--more to come after that.

    As always, I am happy to answer any questions from this amazing group. We are paving new ground here with implants for SSD and I am definitely excited to be a part of it and I am still 100% convinced I made the right decision.

    I hope everyone has very wonderful and symptom-free holidays!
    --Kevin
     
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  17. Bulldogs

    Bulldogs Well-Known Member

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    Hey Kevin
    Thanks a million for the update, I had my MRI on my laby ear a few weeks ago and am considering the implant in my laby ear. A little scar tissue but Dr seemed to think it would not be a problem reaching the cochlea with the electrodes.

    Are you experiencing vertigo in your so called remaining ear?

    what sort of work do you do? I can imagine phone calls, sales ect.... could be a problem with a new CI and compromised hearing in so called good ear.

    god bless.... I’m praying and pulling for u my friend

    joe
     
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  18. Clare

    Clare Active Member

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    Kevin, your detailed updates are so helpful for those of us looking at this possibility. I'm not a candidate yet, but understanding your experience gives me reassurance that there's some hope if the good ear goes sour.
     
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  19. redwing1951

    redwing1951 Well-Known Member

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    Kevin I can't thank you enough for your posts. Not only are they informational but so positive. Thank you and wishing you continued success with this journey.
     
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  20. redwing1951

    redwing1951 Well-Known Member

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    I am curious..

    Clare I assume you are having no issues with your good ear therefore you are not a candidate for an implant?

    Joe, are you having any issues with your good ear?

    My OTO told me it is a good choice to have an implant while you still have relatively good hearing in your "good"ear. He also stated that the technology improves daily. I just need to decide how long do I wait for an implant. I have had 2 instances similar to Kevin's over the past year. I am thinking one more and I will pursue the implant.
     
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