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:
- Everyday w/Auto Ultra Zoom
- Everyday w/Duophone/No Auto Ultra Zoom
- Background Noise
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.
Yesterday was quite the day.
I had my evaluation at Jefferson for my second cochlear implant. The day started out pretty well. I was off of work so getting to sleep in a couple extra hours was definitely a perk for one. For two, before I even left for Jefferson, they called me to let me know my insurance was approved.
However, there was a slight catch…
I had to meet the criteria.
I’ll be honest I completely ignored the part about meeting the criteria. After all, Dr. Wilcox did say during my last appointment that it was just a manner of “Crossing our t’s and dotting our i’s”. I knew that I was deaf in my right ear every bit as much as I was in my left ear that I already had implanted. I knew that none of this has changed in the last year. I knew that I didn’t benefit at all from my hearing aid (before I broke it I mean). There’s no reason why I shouldn’t have been a candidate…
However, they left out the part about meeting the criteria being based off of how well you do in the best aided conditions and that for me that would mean how well I do with one cochlear already on…
I had a new audiologist for my appointment since my usual one, Louisa, was on vacation. The audiologist’s name was Paula and she was working with her extern, Alyssa. She was a lot different than Louisa, but seemed nice enough. She said there was no guarantee I’d qualify, but we’d test and see.
I had to do a series of hearing tests that were identical to the ones I did last year for my first cochlear implant evaluation. First they tested me for being able to hear the beep with my cochlear and a hearing aid on (they had a hearing aid for me to borrow). Next they tested me with my cochlear and hearing aid on for sentences without background noise. Then they did it with background noise. The last tests they did were without my cochlear on and for both beeps and sentences.
I did okay on the tests with my cochlear. The cochlear in my left ear certainly helped,but I still didn’t have “perfect” hearing. I noticed that I couldn’t hear from my right ear. Having the cochlear in my left ear helped me with word recognition a bit, but no so much for general sounds especially softer ones and high-frequency.
I got a 73% for the sound and 99% on my word recognition with my cochlear. However, once they took my cochlear off I scored a 0. I am deaf in my right ear. I can’t hear anything at all. Excuse my language, but the direct quote from my audiologist regarding my hearing (or actually lack thereof in my right ear) is that “You can’t hear shit”.
The blue lines show my left ear without my cochlear. The red circles are my right ear. The S’s are where I am with one cochlear implant. What a difference! I can only imagine how great I’ll do with 2 implants if I can get insurance to approve it!
Unfortunately, the FDA says that in order to qualify for this surgery, I have to score a 60% or below in the best aided conditions. Since I score 73% I did too well. That doesn’t mean though that I can’t get the surgery. I had to have Dr. Wilcox and my audiologist, Paula, submit a pre-cert. What this does is explains the test results and why they still believe I would benefit from getting my second cochlear implant and why they recommend it.
They also had me fill out a quality of life survey to submit to the insurance company. This tells the insurance company a little bit of information about how my hearing loss affects my daily life. It asked me about how I perform in social situations, what my dating life was like, how I viewed and felt about myself, etc. I explained how I sometimes skipped social events if I thought it would be too awkward or too loud and I wouldn’t hear well enough. My love life? Yeah my hearing has definitely mad an impact on that. I was in an abusive relationship in the past where my ex would yell at me and make me feel bad for my hearing all the time. My most recent ex was pretty good with my hearing (FYI, that guy I previously wrote about a lot? We just broke up. But that’s another story), but that’s not usually how it works.
Dr. Wilcox went ahead and scheduled my surgery. He said this would force the insurance company to act and make a decision about whether or not they’d cover my surgery. However, we had to schedule it out far in advance (not as soon as last time — last time we scheduled it exactly 1 week after my evaluation!) to give them enough time to make a decision.
So my (tentative) date of surgery is………………………………….
December 14th! If this date remains and insurance is approved I will have my implant just in time for Christmas and will have my stitches out (and be able to wash my hair — thank god lol) the day before Christmas Eve. The receptionists who scheduled it said if insurance approves my surgery before that date we can always move it up though which is what I plan on doing of course.
I also have to go back for pre-testing on December 2nd like I did last time. Exact same procedure.
I didn’t pick out a color for my cochlear or what accessories I want yet, but if it gets approved I will. I’m leaning towards silver. I definitely want a different color from the caribbean blue that I already have. I can never match or be normal of course lol.
I’m feeling a wide range of emotions in regards to my testing. On one side I’m disappointed because I thought for sure I’d be eligible with no questions asked and schedule my surgery right away. But on the other hand I feel blessed to have scored as well as I did on my test. To have 30% hearing is a miracle to me. 73% is something I never imagined I could possibly have. If this is the most I’ll ever have, that alone is a true blessing.
All that I can really do now is just pray and hope for the best. I put it all on God’s hands and trust that he’ll lead me down the right path. It’s as my pastor tells me, the Lord already has the answer and knows what is best for me and he will reveal all of his incredible plans for me over time.
Please continue to keep me in your thoughts and prayers during this time. I do still have a good feeling about it because I know my surgeon is a strong advocate for it. He definitely supports me getting a 2nd cochlear implant and I know that he was making sure to carefully word his pre-cert for the insurance company. Also, my surgeon is a Christian that has called me on a Sunday before my first surgery in the past to pray with me. I know that prayer can make all of the difference in the world right now.