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.
Last night I attended Advanced Bionics’ online webinar that was all about the new Q90 processor. This was really important for me since I recently found out that I am eligible for an early upgrade to trade in my current Q70 processor for the new Q90.
The webinar was very informative. The Q90 looks almost identical to the Q70 but it is smaller and thinner. It also comes with a few new features to help you to adjust to different sound environments and to block out distracting background noise better. It comes with the option of using a smaller battery that is about half the size of the smallest battery used by the Q70, but all of the sizes used with the Q70 are still compatible with the Q90 as well. The battery life is the same in the Q90 as it was in the Q70. One of the biggest advantages with the smaller battery size option (other than the obvious comfort) is that it will fit inside the AquaCase better.
The three new programs offered in the Q90 are the AutoSound, SoundRelax and EchoBlock.
The Auto Sound feature adapts automatically to the environment you are in. It helps you to better manage noise for more comfortable listening. Sound Relax makes sudden sounds more comfortable to hear. Advanced Bionics gave the example of a golf club hitting the golf ball or dishes clanking together. These sounds can be a bit annoying for a cochlear implant user, so with the automatic Auto Sound feature, this noise is softened a bit to be more comfortable. It doesn’t affect alarms or safety sounds though, so you won’t have to worry about missing something important with this feature. Lastly, EchoBack is the one program that is not automatic. EchoBack allows users to hear better in noisy environments.
The Q90 makes me really excited about going bilateral in less than 10 days. I liked hearing about how there were some features that would be only available for bilateral cochlear implant recipients like the StereoZoom feature. There will be features that will allow users to stream sounds through both cochlear implants. They will work simultaneously together to support each other. This will help to create an overall better listening experience.
I asked one of the women doing the webinar if I would be receiving the new Q90 when I received my second implant on November 3oth (It’s not widely available yet, I’m just lucky to have been chosen to upgrade my Naida Q70 from my first implant for it ahead of time) and she said yes so I’m very excited about that.
Overall the webinar was very informative. I’m excited about the new Q90 processor. It doesn’t sound like it will be drastically different from the Q70, so it should be easy to adjust to.It sounds like it will help to give me clearer sound and an even better listening experience (if that’s even possible).
Today has been quite the day! I took off of work today (although I did check in, answer emails, and comment on tasks as much as possible), but the day has been just as busy if not more so than my usual work days.
At Around 10am, I left for the train station and then took the train into Philly. My first appointment was at Jefferson with Alyssa, an audiology student who was filling in for Louisa. I had met Alyssa once before during my last appointment when I had my 2nd cochlear implant evaluation and really liked her. She is not yet an audiologist as she is still in school, but she said she should be an audiologist in May and she still fills in and helps both Louisa and Paula out.
I was just meeting with Alyssa today to choose a color for my 2nd cochlear implant and to go over the options for the accessories and the package. It was a super quick appointment. I was originally trying to decide between the ruby red and the silver. After seeing it though I was pretty lukewarm to the red; it just looked too dark. I decided to go with the silver. It was pretty easy for me choosing the accessories. I didn’t want the palm pilot thing since I didn’t think it was worth it for me. I hear pretty well on the phone without having to use that tool to stream to both of my cochlears. It made more sense for me to opt for getting more batteries instead so I chose extra batteries with more of the small ones since at the moment I have more large than small. I also choose to get the Aquacase and I ordered it to be in a navy blue called Petrol with a white headpiece and cable.
I choose the Silver/Gray one for my 2nd implant and the Petrol one for the headpiece on my 2nd Aquacase.
I asked Alyssa which processor they will be giving me. The Naida Q90 isn’t available for public distribution yet, but I’m eligible to upgrade my Naida Q70 for it for my first implant, so there’s a chance they’ll be giving it to me for my second one as well. Alyssa will call and find out.
I also set up my activation appointment. I had a little bit of trouble scheduling it since both Louisa and Paula will be out for the holidays for awhile but I ended up scheduling it for…………..
DECEMBER 24TH! Yes, Christmas Eve! What an amazing Christmas gift it will be!
After my appointment with Alyssa I went over to Starbucks since I had about an hour of time left to kill. I was happy they had my seasonal favorite — Peppermint Mocha. I ordered it as a Venti Iced Frappachino. :).
Is there anything better than a Starbucks Peppermint Mocha Frappachino? No, there is not.
My second appointment was at 1:30 for pre-testing. It was another very quick, easy appointment. The doctor just asked me some basic questions like if my allergies were still the same, if I had any other surgeries in the last year aside from my first cochlear implant, if I had any medical conditions, yada yada. Then he took my blood pressure which was fine, looked at my throat and gave me a short physical all of which were fine. The last step was having my blood drawn just so they could get my blood cell count or something basic. He said I was healthy and good to go with my surgery. He just reminded me to stop taking all of my medications which I have already begun.
When I got home one of my friends whom I met through the cochlear implant groups on Facebook and the Haddonfield area support groups sent me an email. Apparently the Hearing Association of America is looking for articles for a recent issue from people with cochlear implants. He gave me their contact information and I sent her an email so we’ll see what happens! It would definitely be awesome to collaborate with them on something!
Everything is starting to happen so fast with all of this; it’s so exciting! I think I have all of my appointments now. They are:
- November 30th: Date of Surgery
- December 2nd: Meet with Louisa and Advanced Bionics to upgrade first Naida Q70 Cochlear Implant to the Naida Q90
- December 10th: Stitches Come Out
- December 24th: Activation Day!
Tomorrow Advanced Bionics is hosting an online webinar on the Naida Q90 processor. I signed up to attend, so it should be interesting learning more about it especially since I know I’ll be upgrading early. I’ll be sure to blog about whatever I find out!
It’s been a crazy, whirlwind of a week.
Whereas everything with my first cochlear implant seemed to happen in the blink of an eye and get approved overnight, things with my 2nd implant haven’t been quite as easy.
You may recall a few weeks ago I blogged about my evaluation for my second implant and how I scored a bit too high under the best aided conditions. We set up a tentative date of surgery of December 14th. This past week, my mom contacted Jefferson to check the status of the insurance, but they informed us that there were no updates; it was still processing. We didn’t expect to have any answers since Dr. Willcox lead us to believe a decision would be made at the last minute, (most likely not until December 11th…the Friday before the scheduled date of surgery).
However, God works in mysterious ways…
A woman in the pre-cert department decided to keep checking in on insurance and trying to put it through. I am unsure if it was a mistake or if it was done intentionally, but on Wednesday, November 11th, she told the insurance company we were scheduled for surgery on Monday, November 16th. We would need an answer by Friday. This put extra pressure on the insurance company to make a decision.
Needless to say, the next few days left me feeling a bit anxious. I couldn’t wait for Friday to come around to have my answer. I prayed faithfully every day, asking God to give me patience and understanding of whatever the verdict may be.
Patience is something I had difficulty with though once Friday came around. I wanted to know immediately!
I kept texting my mom throughout the day on Friday asking if she had any updates, but she never did. She called Jefferson and they said that there was an issue with the paperwork…they ended up not receiving them until that morning for some reason. I am unsure what happened with that as we were lead to believe all of the papers were sent several weeks ago after the evaluation. My usual audiologist wasn’t there though, I had a new one. I’m thinking maybe that’s where the issue arose — perhaps a lack of communication? Or it could’ve been something with the insurance company. It’s not clear who was at fault.
Regardless, the girl working in the pre-cert department told the insurance company that we needed an answer. We were scheduled to go into surgery on Monday…we had to know. So the insurance company said they’d have an answer for us by 5:30pm. This was a whole half hour later than the office at Jefferson was even open, but the woman in pre-cert said she’d stay late. She came in to work late anyway.
I stared at my phone like crazy. After work I had to go to the grocery store with my dad. It was about 5 when we went. I told my dad to make sure the sound was on on his phone in case my mom called him from work with news. But it never rang.
When we got back to the car it was 5:21. Still nothing. I began to get disappointed thinking we wouldn’t hear anything because even if the insurance company came up with an answer, Jefferson would be closed so we wouldn’t know until Monday.
I got home and continued to stare at the phone. 5:30 rolled around. Then 5:45. When the clock read 6 I was ready to give up and assume that either it wasn’t approved, we wouldn’t have an answer until Monday, or both.
Then the phone rang at 6:01. I picked up on the first ring, totally surprising my mom who is still not used to the fact that I can hear on the phone.
And the verdict was….
INSURANCE WAS APPROVED!
My surgery isn’t really going to take place on Monday, but soon. Everyone at Jefferson was gone by the time it was approved (except the poor pre-cert girl who called) so we will have to call on Monday to reschedule surgery (and first move up the pre-op appointment to go over anaesthesia and all of that stuff). I know that Dr. Willcox does surgery on Monday and Thursdays, so we’re looking at the earliest date being Thursday, November 19th. I will know for sure on Monday though. I want to get this done as soon as possible!
My other exciting news is that Advanced Bionics has a new processor out, the Naida Q90. My audiologist has already contacted me asking if I’d like to come in for an upgrade. I can just trade in my current model, the Naida Q70. The Naida Q90 is supposed to be pretty similar but offer better sound quality especially in regards to noisy environments. It’s also supposed to be a bit smaller.I am doing a webinar on Thursday (unless of course I am in surgery that day haha) where I should learn more about it. I’m not entirely sure if I want to go ahead and trade in my current processor for it since I have been doing so well with the one I have already, but regardless it is exciting and I’m looking forward to learning more about it.
I have more exciting news too about something else that is happening in my life, but I can’t talk about it openly yet. I just ask that everyone keeps me in their thoughts and prayers.