Don’t despair!

I received an email the other day from someone who was just implanted and activated. So I replied and I thought it would be a good idea to share this email here in case others are faced with the same situation. The names have been eliminated to protect the innocent…

    Hi Sam
    Just on now reading what information I could possibly get concerning CI. I had surgery on Jan 8/08 and got activated yesterday Feb 1. I am feeling really sad because right now I cannot tell one sound from another. Everything sounds the same. I cannot hear the telephone ringing or the doorbell. The radio was on this morning but I could not tell what it was. Do you think this will improve? After reading about you there was not much on about your first implant and your activation I am glad for you if it worked and see you have another CI. I presume the first one worked good for you to have another. Were you dizzy for long after your surgery?I am still dizzy and really ligh-headed. If I want to go downstairs I have to get my husband to help me. I am going back to my surgeon to get that checked on Monday. I hope to improve because as of now I am very disappointed because nothing sounds human. I am crying since activation yesterday.. I would love to hear back from you sometime on this.

    Hi (blip),

    Welcome to the strange and new world of CIs. Please don’t despair. Your situation is no different than anyone else who became implanted and activated.

    You didn’t tell me your history before you had your surgery so I am assuming that you wore hearing aids. When you are activated, the audiologist will purposely minimize the amount of sound so as to not overload/over-stimulate your brain. Although you are suppose to “hear” something, differentiating the sound may or may not be difficult.

    It all depends on whether your brain heard it before and can tell what it was. Over time, you will be able to tell what the sound is. And more often, you’re going to hear something, not know what it is and will ask someone. THEN, you’ll know what it is the next time. For example, I was hearing a clicking noise in the kitchen. I never heard it before so I asked my wife what it is. She said it was the pilot light on the stove. NOW…I heard it and can tell what it is.

    It does take a lot of effort and work but I can assure you YES…sounds will improve over time. Patience is virtue. Some people adapt immediately; others in 3 months and yet others in 6 months. I have been activated in my right eat (the worse one) over a year now and I still have difficulty and have to rely on lip-reading. BUT..lip-reading has definitely gotten easier. So in a sense there is an improvement there. If you want to read up on my first implant, look back to January 2007.

    After the first surgery, I was dizzy and light headed for about 3 days. And I had to wear a special patch to prevent nauseous spells. The second surgery was a non-event mostly because I knew what to expect. And now, I impatiently await activation in less than 2 weeks.
    So please don’t despair…everything is going to work out just fine and dandy. And feel free to continue to email me if you have any other questions!


2 comments for “Don’t despair!

  1. February 4, 2008 at 10:33 am

    What she describes is SO NORMAL!

    For about a month after activation everything sounded the same to me! The toilet flushing, my husband, the TV, everything was just beeps. It does get better, so much better!

    As to being dizzy, some people never get dizzy, but others like me have it tough! I had a tough time walking straight and keeping my balance for at least two months after activation. I remember I would kneel to get something from the fridge and land right on my ass. I also could not drive for a while. It’s good to get that checked out and evaluated if she wants to get a second CI one day.

  2. K.L.
    February 4, 2008 at 2:00 pm

    Hi Sam,
    You have done a great service with this post. I am the mom of an implanted child, so cannot respond with personal knowledge, but it saddens me that the people who did the surgery weren’t more specific on what to expect after activation. It is common to hope for/expect instant results, but they just don’t happen. It takes time. If she had been properly informed ahead of time, it would have eased a ton of worry. I have seen great results from both kids and adults, but it usually takes at least a year to fully realize the results. And that is if they are diligent about their mapping and speech therapy sessions.

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