Personal, Post-Activation

Cochlear Implants and Depression

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Image Credits: The Odyssey Online

Before I get started on this blog post I just want to acknowledge that this is not going to be a popular post or a topic many people want to hear about. Most people, especially those who do not have cochlear implants, only want to hear about how amazing and life-changing they are. Make no mistakes, getting both of my cochlear implants was the best decision I ever made. I have absolutely no regrets. But at the same time that doesn’t mean this has been a fun and easy process where every single day is all peachy. Sometimes it is really really really hard, frustrating, scary, and overwhelming. Sometimes your cochlear implants can even make you feel quite depressed. That’s exactly what happened to me after my hearing appointment at Jefferson on Thursday.

Thursday’s hearing appointment was my 2nd appointment since going bilateral and my first post-activation appointment. I was going for my 2nd mapping and to have some adjustments made. I told Alyssa, the resident in training audiologist whom I’ve  been seeing for a few months now, that I thought I wanted more volume in my new processor, so she had me go through and listen to all of the sounds at varying levels again. She made some adjustments based on my responses. She checked my initial processor for my left ear as well since it’s been  I few months since we did it. She actually ended up turning the volume down on that one.

After adjusting the volume Alyssa asked me how I liked my current programs and which new programs I wanted. This was a pretty long process since I am only of the only bilateral patients at Jefferson with the new Q90 processors. Some of their patients have them, but it’s very rare to have 2 of those processors now since they aren’t widely available yet. She had to get the audiologist, Louisa, for help a few times since they haven’t made these programs before. I had her program me with the following programs:

  1. Everyday w/Auto Ultra Zoom
  2. Everyday w/Duophone/No Auto Ultra Zoom
  3. Background Noise
  4. Aquacase

I haven’t had to use the program for the background noise yet since I haven’t been in that loud of an environment yet. I did use the duophone once during a client call on Friday but it didn’t seem all that different to me yet. Maybe because I still need to work more to train my new implant. I will try the Aquacase on Monday when I go to the gym. It will be my first time using 2 Aquacases at the gym so I’m pretty excited to see how it compares to wearing just the 1.

Once we got all of the programs squared away it was time for my least favorite activity: a hearing test. She had me take off my left cochlear implant so we could just focus on my new, right ear.

First Alyssa tested me with just the beeps. I did very well with those. She didn’t write down the percentage and I don’t have my audiogram with me to look at it right now, but I know I scored right around the normal range with that which is great considering I’ve only been activated for a month. It was a good start.

Unfortunately, the test seemed to go downhill from there. After that we moved on to sentences. Alyssa played recordings and I had to repeat them back. I could pick out a couple of the words, but I missed a majority of the sentence. After doing some sentences we moved on to just words where I did even worst.

Being in that extremely small room and not being able to understand what was being said through the speakers gave me such extreme anxiety. It always does, but it’s the worst when you’re unsure of yourself and it heightens when you keep getting the words wrong. The more you miss them, the more anxious you become and then you simply get depressed. Hearing tests can be the absolute worst when you’re deaf or hard of hearing and it’s hard to really describe or have someone relate to that feeling unless they’ve experienced it.

The absolute worst part of the test though was what followed. After going through all of the sentences and words Alyssa instructed me to remove my right cochlear implant (while still keeping the left one off) and she tested me for the beeps again. I got maybe 2 pitches right when they were at EXTREMELY high volumes and that was only because I could feel the vibrations through the headphones. If it weren’t for the vibrations, I would’ve missed those as well.

I have no residual hearing left in my right ear. I knew that was a risk when I got implanted and I was more than willing to take that risk. However, I still expected to retain my residual hearing since I did with my first implant. The hearing I have now is far greater than what my residual hearing was (I only had about 7%, probably a bit less of residual hearing), but it was still hard to hear (no pun intended). Without my cochlear implant in that ear, there’s nothing there.

Alyssa calculated my word recognition to be 34%. She said she was happy with my progress and that I was right where I should be for being activated for only a month. However, all I saw was a 34%, which to me meant failing my test big time (think of it this way — when you’re in school and earn a 34 on your math test you’re probably less than thrilled…). I felt really depressed after that test and spent the rest of the day sulking and feeling sorry for myself.

My cochlear implant is a blessing and having 34% is a HUGE improvement for where I was, make no mistake. My mom and many other people in my life yelled at me for being so miserable and for being so hard on myself. But it’s hard to  make someone understand who’s never been through it. Yes, I know I’m right on track and I’m doing well blahblahblah, but it doesn’t always feel that way. It is frustrating to know you’re not hearing the right way. I have the volume in that ear but I don’t understand sounds very well yet. I can’t always make out words or sentences. I’m not on the same level with my left ear yet. I know it takes time, but it is so easy to become impatient.

I also feel a huge sense of pressure and like I have high expectations that need to be met. I myself set the bar high and have high expectations for myself. I know how well I’ve been doing with my left ear and I keep comparing everything to that ear now. When I received my first cochlear implant there was nothing to compare it to so everything felt amazing. It’s hard now that I know what to expect. It’s hard to remember that this is going to take time, especially because I expected things to be so much easier with my 2nd implant (which does not seem to be the case).

There’s also the issue with the people who never received cochlear implants and don’t understand how they work…which is pretty much everyone in my life. Everyone asks me about it constantly and “Can you hear me now” or “Wow, I bet you can hear really great now”, but that’s not always a yes…or at least not yet. Actually without the help of my left ear, a lot of things sound really weird with the right one now. Things still sound robotic. I still can’t understand a lot of spoken words. I might be able to hear you, but I probably don’t understand you as well as I want to. Trying to explain this to people is hard. There’s a lot of people that don’t understand and when you try to explain it they think “Oh, so it’s not working?’ No, that’s not right either. It is working, it just takes time. But it’s hard to explain it to someone who doesn’t understand and it gets depressing because it’s like a reminder that you’re not quite where you want to be with it. And you feel like you’re letting everyone around you down who thought you’d be able to hear and understand everything well right away. And then you feel like you’re letting yourself down, too,  because you’re  not where you want to be with it, either.

I really wished on Thursday that I had a bilateral (or even just plain deaf/HOH) friend to talk to. I mean I do have some that I met from the support group meetings, but they are all significantly older than me. I wished I had someone my own age, someone with a similar story, to confide in and to lean on for support. Because I think that’s the only kind of person that would have understood why I was upset and exactly what I was going through. I know these people are out there — just haven’t had luck actually meeting any yet lol.

The cochlear implant journey is not easy and it’s not a straight-forward path to success. It’s a rocky mountain climb and sometimes you fall down the mountain and end up in the slumps feeling depressed by the whole thing. But with hard work and practice, you will eventually make it to the top when you are ready.

I spent all of Thursday sulking. Then on Friday night I went back to practicing words with my mom and I got most of them right and I felt a lot better. I’m hoping to squeeze in some time to play with Angel Sound and listen to some sermons with just my one processor on to further help to train it. One thing that I forgot on Thursday that my mom reminded me of was that I didn’t get tested for words on my 2nd mapping with my first cochlear implant — I didn’t do that until 4 months after activated at which point I got a 68%. When you think of it in that light my 34% at the 1 month mark doesn’t sound bad at all. I really shouldn’t have been tested so soon for word recognition. But Alyssa didn’t know better I guess. But it’s only been 1 month and I’m already halfway where I was in 4 months with the first one. I’m not doing as bad as I think.

I’m not about to give up. I’m going to keep working until I end up where I want to be. This is a long process, and it won’t always be easy, but I know it will be more than worth it.

4 thoughts on “Cochlear Implants and Depression”

  1. Hi there, I came across your blog as I was searching for information about what cochlear implant users are experiencing after activation or early in the rehabilitative process.

    I was implanted on Nov. 30th of 2015 and activated a week later, but did not really start using it until mid December. Since then I have had several mapping appointments as well as auditory therapy sessions. My hearing loss is…left ear = deaf, right ear before implant about 20%. I wore a hearing aide since age 2 (am now 38) and did very well with the hearing aide. I developed normal speech, am employed and also currently an online college student. I decided to get the implant bc my hearing was steadily decreasing over the last 4 years.

    The problems I have been experiencing are some depression, anxiety and irritability. I have been able to tell how the implant works, but am not up to par with how well I was able to hear with my hearing aide yet. I too, get tired of people asking or thinking that I am hearing better than before.

    I know the rehabilitative process is important for success and have been wondering if there are some environmental factors that can have a negative effect on progress. I haven’t been able to find any articles yet about this. Most as I think you pointed out are all about success stories.

    Thanks, for posting your experience and good luck.

    1. Hi Jeff,

      Sounds like your experience is similar to me. I had my second one done in November 2015 and activated in December, too. How often are you using it? I wear mine constantly.They recommend using it by itself when possible but I honestly don’t do that as much as I probably should. I am unsure about environmental factors, but I know that of course where you are will make a difference (for example you’re bound to struggle in a noisy environment). Different tones I struggled with too. I just tried to hear as many different sounds as possible to train it. I hope that helps a bit!

  2. Hello there,
    I came across your blog. Hope you are doing better now. It’s been only one month since I got my CI activated on my right ear. I can relate to a lot of what you have experienced. I also have high expectations when it comes to my hearing loss. I read only positive stories of how a CI impacts the lives of many in such amazing ways. That is what convinced me to have the surgery. I don’t regret the surgery, but it’s not all pretty. It is hard to learn to hear again. It is hard to remain positive even when others tell you that you are doing great. I am taking it day by day and listening to the bible on audio to help me with therapy for my ear. I went on the listening room for lessons to do therapy but have not been successful, as it doesn’t play any sound or I am not doing it right. I am looking for other resources to help me. If you know of some that you can recommend, that would be great. My main concern right now is not being able to hear well when I put on my left hearing aid and have my CI on. I feel unbalanced and it makes it harder to hear with the CI. I try not to use the hearing aid to help the rehabilitation process of my CI. I’m a resource teacher and I am anxious I will not hear well by the time school starts. I know I need to have patience. It does take time and eventually it will get better. My hearing before surgery was at 9% it is now at 45%. My audiologist said that’s really good for being only one month. I pray it gets higher with time. Thank you for sharing your story. 🙂
    Warmly,
    Norma

    1. Hi Norma,

      Thank you very much for your comment. Yes, I am doing much better now. The first three months I’d say are the hardest, especially that initial month. It can be extremely discouraging especially if those around you have never been through it because it’s so difficult (if not impossible) for them to understand what you are going through. The best advice I can give you is not to give up! I also used an audio bible to help me to train my ear. It’s a very good resource, but you may want to read along with it, too so you know what you are supposed to be hearing – this can make it a little easier to train your ear. Have you tried Angel Sound? That’s one of my favorite programs for listening acivities. Definitely start from the bottom and work your way up with those and don’t be too discouraged if you don’t get it…they make them WAY harder than you think (my hearing parents struggle with some of the mid-range ones!). Also, which company did you go with? Some of them released their own programs as well.

      Another thing that I think can be more effective than those programs is simply printing out word lists and having someone go over them with you and repeat the words back to them and have them mark the ones you get wrong or have a particularly difficult time with. Look for patterns with specific sounds like CH or WR sounds, etc. that you are struggling with – it could be a specific consonant/sound you need more work with.

      Another word of advice that is really hard to follow – try to keep just your cochlear on (no hearing aid) as much as possible…this can help speed up the training process. You’ll probably want your hearing aid when you go out and are at work or school, etc. but when you are home try to use just your cochlear as much as possible. You will feel unbalanced for awhile, but eventually your cochlear will completely dominate your hearing aid and you may even get to the point where you’ll forget to put your hearing aid in and not even notice!

      Being at 45% is right on target if not above where you should be for the first month. Some audiologists don’t test after the first month because it takes awhile to get used to it and they think it’s too soon to track progress. Wait until you’re at month 3…chances are, you will have improved DRASTICALLY. With my first cochlear I wasn’t tested at month 01 I don’t think. In month 03 I think I may have been around 70% hearing after starting with about 7%…huge difference!

      If you ever go bilaterial, I think the 2nd cochlear is actually harder than the first, probably because you will always compare it to your first one. Going from no hearing to all hear is intense. When you get your second one (if you choose to) you’ll already have one ear trained and hear pretty well with that, so the difference isn’t as noticable or as big of a change which can make the training a little more frustrating and discouraging, but you’ll definitely get there!

      Just keep working at it and being consistent and know that month 01 is by far the hardest! I’d recommend doing a MINIMUM of 3 hours of training per week but the more the better. Don’t forget to add music in as well. It will probably sound horrible at first but the more you listen to it, the better it gets. Also, note that learning music is a lot harder than learning just words.

      I’m sorry for this incredibly lengthy response but I hope it was helpful! I wish you the best of luck on your exciting journey! Please don’t hesitate to ask me any additional questions you may have!

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