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CI Journal – 3 years, 2 months, and 13 days – Update Part 1

13 Jun

It is 3 years, 2 months, and 13 days into my journey with cochlear implants, meaning since the surgery for the very first implant. It’s been a long time since I updated this blog – my last entry was 1 year and 10 months ago! Wow, almost 2 years. I do feel bad that I haven’t updated in so long, but to be truthful, there wasn’t much to write about up until a few months ago. Yeah, I should have blogged then, but it didn’t occur to me to blog about things as they were happening, so I will just have to do a long update. Get comfortable!

Some may be wondering about my progress with the implants over all during that time, so I’ll just get that out of the way now. Well, I’ll be honest, maybe I got lazy or distracted, or maybe something went haywire with my brain, who knows, but my ability to use the implants actually went downhill. I’m not hearing nearly as well with them as I was a year and a half ago. I am sure this has a lot to do with the fact that I stopped actively working at teaching my brain to use the implants. I guess I thought that I had reached a plateau since I had stopped making leaps of progress and instead was making very slow, nearly unoticeable progress. I figured this was about as far as I was going to really go, and that I couldn’t really “forget” what learned. You know, like riding a bicycle – you never really forget how. Well, apparently this does not hold true to cochlear implants. As frustrating as the thought is, it seems as though you have to work at it your whole life.

I’ll be honest, I feel a little… gipped. No one told me I’d have to work so hard to hear my entire life. This may not seem like a big deal to some people, but those who have been there and done that understand that it is stressful and tiring to constantly “practice” hearing. Even with a wonderful therapist who made the “learn to use your new ears” sessions tolerable, it was still the most frustrating time of my life with the implants. I couldn’t wait for that part to be over, to be done with the pressure to “learn to use them”. Between pressure disguised as “encouragement” from family members and others, and unrealistic overly optimistic expectations from them, I began to resent the implants and even psychologically reject them. I was so tired all the time, it was mentally and physically exhausting. I had enough to deal with, you know, like real life and stuff? I wanted to get on with using the blasted things effortlessly, I wanted to forget they were even there and just have my hearing as it was be a part of my life. (Apparently, that’s never going to happen.)

So when the sessions were done and I reached that plateau, I felt relieved. I thought it was over. But I was wrong. And I’m not happy about that. It’s not fair. Sure, it’s a wonderful thing that I have bionic hearing when otherwise I’d have no hearing at all, but it’s not fair that I have to work so hard for it my entire life when everyone else gets to have it so easily, so effortlessly. Yes, cochlear implants are wonderful, and I am thankful to have them just like I’m sure anyone else that has them is, but I think those in the hearing world miscalculate or misjudge just how much those of us with implants would, could, should, or do love having them. Cochlear implants may solve a big problem, but they give you a lot more to solve in it’s place. I’m pretty sure that when someone says “Wow it’s so cool, YOU CAN HEAR!” I am not the only one that thinks “It’s not as great as you think it is. You’re so used to hearing so easily and effortlessly. For me, it’s work. It’s stress. It’s frustrating. It’s not like one day I went from being deaf to being just like you, it’s more like I went from something I knew and was comfortable with to something that I have to work at constantly while I watch everyone else around me get it so easy… just shut up. You don’t know what it’s like.”

And having implants of course causes expectations of those people in your life for you to be able to do things that despite how much hearing the implants have given you, you just. can’t. do. Like for me, hearing on the phone, and being able to comprehend without reading lips. It’s just not going to happen, and I am tired of it being expected to happen. It could happen, yes, but at this point I’ve gotten to where I don’t care if it does, because I’m so tired of “hearing” about it. I’m also tired of the disappointed faces when, for the 400th time, they ask how the mapping appointment went and my answer is always “The same as all the others”. It’s like they think that each appointment, each surgery, each little thing involved is going to be “THE CURE”. It’s going to make me hear! It’s going to solve all my problems! No it’s not. Why can’t they just be happy with the way things are? I am! As if all that wasn’t bad enough, whenever the results inevitably don’t measure up to their expectations, it’s always my fault somehow. I don’t do enough. I don’t practice enough. I don’t care enough. Oh no, the very idea that maybe I’m NOT going to hear as well as them is just not possible, it’s all my fault! It’s enough to make me sometimes wish I had never gotten them. Some days I consider taking them off for good and making everyone sign, refusing to read lips or talk anymore. What could have been a wonderful experience has been ruined by the invasion of those who think they they own stock in my bionic ears. Somehow it’s become all about THEM and what THEY want. THEY want me to talk on the phone and hear without lipreading. That’s all that seems to be important. Why? Since when did this become about them?

Message? Back off. Simple as that. Back off, and shut up. Accept me for who I am. Quit making assumptions. It’s my life, it’s my hearing, no one knows me or my hearing better than I do, what goes on with me and my bionic ears is between me and the doctors/professionals I work with. If there’s something I want you to know, I’ll tell you! I’ve got enough stress going on with the damned things without your ignorant input!

Anyway, enough ranting – on with the update. So, let’s see… I last wrote about some problems I was having with my implants. I also wrote that they ran some tests and found nothing wrong. Well, after that entry, I continued to have some problems now and then, but nothing more than short occasional annoyances. I really didn’t pay much attention to it, I wrote it off as probably something electronic interfering with my processors that I just couldn’t locate.

Sometime in October 2006, the right side implant (the first one I was implanted with) began going wonky. At first it was just slightly increased occurences of the previously mentioned annoyances (static, etc.) Then it began to happen more and more, to where it was happening at least 2 or 3 time a week. This got worse and worse, the static would get to where it would bother my nerves when it happened so much that my face on that side would twitch, and eventually it started shutting off and on repeatedly. By the time my procrastinating self finally made an appointment in March of 2007 with one of the audiologists in the Hearts for Hearing clinic (formerly known as the Cochlear Implant HELP clinic), it had gotten to the point where it would shut on and off rapidly and repeatedly at any given time during the day. Some days it wouldn’t do it at all, some days just every few hours, and some days all day long. It finally got to a point where it was so irritating, I wasn’t even wearing the processor on that side anymore.

During the month of March 2007 Dr. Wolfe ran a series of tests on that side, but could never “catch” the problem or figure it out. They went all the way up to calling in a lady named Julie Bates who works for Advanced Bionics to test it, and she still didn’t find the problem. They ran me through the ringer of tests doing everything they could, and of course every time I went up there that side would work perfectly fine. It was really very frustrating, because even though I knew they believed me, I wanted them to be able to actually see what it was doing, I needed that affirmation that yes, it is messing up. They had planned to declare the implant a failure anyway if it was still messing up after everything we tried (including all new external parts at one point), but finally at the last appointment before declaring it failure, it acted up while Dr. Wolfe had it connected to the computer and he finally saw what it was doing. I was very relieved, but at the same time it was bittersweet, because it was then confirmed that yes, the implant was in fact a failure and I would have to have surgery again to replace it. If you’ve read my accounts of my previous 2 cochlear implants surgeries, you know this was not good news to me by any means. I was terrified of going through hell again, but I was not about to let everything I’d been through and all that money that had been spent on me go to waste. There was no question about whether or not I’d have another surgery to replace it; I was definitely doing it.

However there was some good news despite the bad news. We found out that since the implant was a failure, Advanced Bionics would completely pick up whatever financial burden our insurance company didn’t. This meant we pretty much wouldn’t have to pay a cent, except for prescriptions afterwards and the gas, haha. Not only that, but after the surgery I would also receive two of the new Harmony processors, which would be an upgrade from the Auria ones I had. Of course this meant I would have to trade in 2 of my Auria processors along with 2 batteries and 2 headpieces, but I was getting new equipment to replace all that, so it was all good. I have not been able to afford to replace the outer equipment, so I was still using what I had received right after my last surgeries. Needless to say, I wasn’t in a good place equipment wise, so in a way all of this was a blessing because I’d end up getting new equipment. The external parts do break or become unsuable due to normal wear and tear, and need to be replaced regularly. As it was, I was already on my last pieces of equipment, so when those broke I faced not being able to use my implants for a while until I could find a way to acquire new ones.

I’d like to make a bit of a mention here: failed implants do happen, but not often. In my case, I had received one of the implants that were part of a recalled batch of implants, that unfortunately were not recalled until I had already been implanted with one. I received a letter from Advanced Bionics informing me that I had been a recipient of one of those implants, along with information on what to look out for. So it’s not a common thing for implants to fail, I don’t think, I just happened to be unlucky with my first one. In fact, I barely escaped the same fate for my second one. The second implant surgery was postponed 2 days before I was supposed to have it because of the recall. So I ended up having to wait longer for the second implant, but apparently I escaped this same fate with the other side! That would have been awful!

So, this concludes the end of part 1 of my update. I shall continue part 2, covering the third surgery, recovery, and activation in my next post.

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12 Comments

Posted by on June 13, 2007 in Cochlear Implants

 

12 responses to “CI Journal – 3 years, 2 months, and 13 days – Update Part 1

  1. Carol

    August 3, 2007 at 1:39 pm

    Great writing. Keep it up and let us know how you are doing.

     
  2. LMJ

    August 31, 2007 at 5:18 pm

    Great post! A very honest opinion of Cochlear Implants. I appreciate your candid expressions. I hope your surgeries go well and I look forward to more posts from you. (smile)

    I’m also going to link to you from my blog!
    http://www.okcdeaf.com/?p=101

    lmj
    owner: http://www.okcdeaf.com

     
  3. Otto

    September 4, 2007 at 6:45 am

    Hi

    You might not appreciate this comment but if you were born in say 2015 or so (by which time you will be middle-age) then they might have implanted you straight away when you were 4 instead of giving you hearing aids? I’m not sure if that would have made a big difference?

    Anyway, thanks for posting. I hope you don’t mind – I have referenced your blog on my website. My wife teaches pre-primary school kids who are deaf and get CI’s hence my interest.

    Bye
    Otto

     
  4. beingbionic

    September 5, 2007 at 5:22 pm

    You might not appreciate this comment but if you were born in say 2015 or so (by which time you will be middle-age) then they might have implanted you straight away when you were 4 instead of giving you hearing aids? I’m not sure if that would have made a big difference?

    Thanks everyone for the comments! To answer the above – yes I realize that if I were born much later, most likely I would have been implanted straightaway and with much better implants than even what I have now. I’ll set my opinions about the patient’s personal choice and risks of the procedure itself aside for the time being to say that if this was the case, I feel life would be different and perhaps easier, if nothing else because those implants would have been all I knew, along with any inconveniences just being a part of life rather than something to get used to or deal with. There would also be no pressure to be “better” than I was “before” since there was no “before” to be better than. There would be nothing for others to expect me to be “cured” from, but rather acceptance for who I was, as I was. Of course there’d always be well intentioned “encouragement” to work at “hearing” as with the hearing aids for me in the past, but that pressure was nothing compared to the pressure I am experiencing with this new technology that the hearing world is misunderstanding as “the cure for deafness”, rather than what it really is which is a tool for attempting to mitigate deafness.

     
  5. jim

    September 23, 2007 at 12:48 am

    hi. I’m in the process of testing to qualify for a CI amd if it goes well I will have the surgury dec 31 2007. You mentioned the external equiptment will need to be replaced eventually due to wear or by accident or whatever. I’m curious as to how much the external equiptment cost to replace and if your insurnace covers any of it?

    thanks for replying

     
  6. beingbionic

    September 23, 2007 at 9:15 am

    “hi. I’m in the process of testing to qualify for a CI amd if it goes well I will have the surgury dec 31 2007. You mentioned the external equiptment will need to be replaced eventually due to wear or by accident or whatever. I’m curious as to how much the external equiptment cost to replace and if your insurnace covers any of it?”

    Hello, Jim, thanks for commenting and reading! Congrats on your upcoming implant. How often parts need to be replaced and how much they cost varies with each “brand” of implant. Whether or not insurance covers it also varies with each person’s insurance. With Cochlear Implants, the involvment of insurance companies appears to be highly varied – some won’t even pay for the surgery and others will pay for everything and all the rest are in between. You will have to ask your insurance company about it.

    Unfortunately as far as I know, my own insurance does not guarantee paying for replacement parts – it’s a “submit a claim and hope for the best” kinda deal. So I have to operate as though it doesn’t pay for parts, just in case, so I don’t rely on getting refunded anything.

    If you look on my Tip Jar page, you will see that I have listed all the parts that need to be replaced for my implants, how often, and how much each part costs. Again, this will also vary depending on which brand of implant you get. Good luck!

     
  7. Heather

    October 13, 2007 at 7:57 pm

    Incredible conversations…My son was diagnosed with severe/profound hearing loss at the age of 15 months. He is now going to be 2 and has been implanted bilaterally and is doing amazingly well. What a trooper. Some people have mentioned concerns about replacing parts. Of course it has only been 4 months and I haven’t had to replace anything yet…but we are part of a program through the University of Chicago that pays for anything that my insurance does not pay…great deal. Otherwise, most of the parts to the CI are quite costly…you can see the prices if you log onto Advanced Bionics or Freedom Nucleus…you just hope you don’t break anything soon. But I wouldn’t trade this for the world…my son is a completely different child and can now hear a whisper!

     
  8. Laurie in TN

    October 30, 2007 at 6:46 am

    Hello! MomToToes sent me here. I, too, am bilateral and love it. I also hear better with headphones with two ears on the phone, my iPod, etc.

    Sorry to hear that you have an implant failure. But, I’m glad AB is making it right for you. Have you had the surgery yet and how are you doing? Do you get mapped regularly?

    Nice to meet you. I look forward to reading your blog and catching up on your past posts!

     
  9. Laura J

    December 16, 2008 at 4:59 am

    great post!
    its great that you mention that you can lose cochlera implants like i do and its rare and we were unlucky! Although mine didnt fail i lost it through a bad ear infection.

    I love that you give a honest opinon of your implant as i do inmy blog and it takes a lot of practice and work just to hear! It’s worth it all the hard work though and it gets better as time goes on!

    Look forwrd to your next update!

     
  10. Zonaid Rahim

    January 20, 2009 at 11:08 pm

    Its a very nice post from the heart of a cochlear implant patient.One thing I can tell you that its not end.Its beginning.Nothing to loose.

     
  11. Pearly

    March 22, 2011 at 2:08 pm

    Thank you very much for sharing your stories. I am a graduate student doing research on cochlear implant for my thesis. Could you please let me know if I can contact you for some questions?
    Thank you very much for your help.

     

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