1.5 years post-activation

Hmm, this blog has been quite dead for some time, so here I am with an update!

It’s been almost 2 years since I got my cochlear implant now.

It’s been a wonderful journey.

I still am very happy with the decision I made: I prefer the sound of my cochlear implant over the dull sound I got with my hearing aids. If only I had known sooner. 🙂

I’m not suddenly a hearing person, I have never picked up a telephone yet and I don’t feel the need to either. I don’t listen at people when I can’t see their mouth, but I don’t even try either. I’ve been so used to not hearing anything useful that my brain has been conditioned to just not put too many effort into hearing.

The audiology sessions however used to go incredibly well, if the environment was completely quiet. I could understand a lot of simple sentences, quite a lot of words, and I could retell tiny stories without having to lipread, IF the person telling them would speak slowly and repeat the sentences I couldn’t understand.

I exercised a lot outside of the audiology sessions too, at home with my grandma. She has been incredibly helpful and I have made heaps of progress.

After a little under a year, though, I got terribly bored of the audiology sessions. I found a job and I am settled and all, and I never felt like I really needed my cochlear implant to be able to communicate. I have always managed to scrape by without. I stopped exercising and I haven’t made any real progress since.

Sometimes, when I talk to people in a quiet environment, I manage to hear parts of what they are saying without a clear view of the lips.

I’ve been neglecting wearing my hearing aid in the other ear since my implant is much better, but lately I’ve been trying to wear my aid again. One weird downside from having neglected that ear and now suddenly wearing hearing aids there, is that I got some episodes of tinnitus after having worn my hearing aid all day.

I never had tinnitus before, I expected it to be a certain way, a continuous ‘tone’ that screeches in your head, but it totally wasn’t like that. I just heard some… music. Soft and calming long tones that play a slow, pretty melody. I only heard it when I wasn’t wearing my cochlear implant, when I put on the cochlear implant I wouldn’t hear it anymore, while wearing my hearing aid didn’t make it disappear.

It was really weird. Now that I’ve gone back to wearing my hearing aids everyday alongside my implant, these tinnitus episodes have disappeared though.

Oh, and music. I love listening to music with my cochlear implant. The sounds are much more crisp, much more clear. I love to listen to music in my car and sing/sign along. I already loved doing that before I got my CI, but now I love it even more.

Med-EL also came out with rechargeable batteries for the SONNET. I ordered three big ones, but I swapped back to the non-rechargeable ones, as the rechargeable ones don’t last me an entire day. I can go for 3-4 days with the disposable batteries so I prefer those.

Nowadays, I wear my cochlear implant pretty much everyday, I tend to leave it out sometimes in the weekends or during holidays when I’m not leaving the house that day, but whenever I go outside I do have my cochlear implant.

Oh, and I recently got a job. I currently work as an on-site IT support engineer for public schools. It’s an amazing job and I love it.

That’s pretty much all I can think about for this update.

Thank you for sticking with me, fellow readers!

Three months post-activation update!

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Hello dear followers!

I know I haven’t updated for the longest time. I know, and I’m sorry for that, I just never managed to find some free time to update this blog.

Anyways, here you go, some news!

Once I came back from the very first mapping session, I didn’t really hear anything. I felt strange sensations in weird spots in my brain and those sensations didn’t look like sound at all. I had (and still have) most of the sensations if there is paper which is crinkling, metal/other kitchenware clattering and when water is flowing.

The second mapping session was a few days later, I got 4 programs on my processor again, with increasing sound levels. I had to be on program 4 when I would go to the next fitting. During the first 3 weeks, most of the sensations changed into something I started to perceive as sound.

At the third mapping, 3 weeks after the second mapping, I got the SONNET EAS: they gave me a normal SONNET at first, but I insisted on getting the EAS as I really wanted to get the most out of my residual hearing. It isn’t an enormous difference, but it definitely feels more comfortable having some acoustic input.

Some of my electrodes can’t be stimulated as much as I would like them to be stimulated, as I’m getting unwanted facial twitches if the electrodes are too loud.

I’ve been to 7 aural therapy sessions already, and I’m pleasantly surprised with my cochlear implant. The sound quality of the implant is SO much better than with my hearing aids. All sounds are so much more clear and crispy.

There, this was a quick summary of the progress up to now 🙂
I’m really, really glad that I made the decision to get a cochlear implant. I can’t suddenly “hear” (didn’t expect to either), but it does make a big difference. Sounds are more crisp and clear.

I’ll try to make a more elaborate post later, just letting my dear readers know that I’m still alive, kicking and very glad with my implant!

The big day! Cochlear implant activation

Well, today was the big day: I got activated.

The activation was planned for 10:30 am. I woke up at 7 am and couldn’t get back to sleep, so at 7:30 am I decided to buy me some croissants and then visit my brother. I ended up thinking the croissants were too expensive and just bought me some bread instead.

After talking a bit with my mom and my brother, I decided to leave for the hospital. I forgot my patient card so I had to make a new one real quick, then I hurried towards my assignment. I didn’t have to wait for very long before my audiologist came to see me. It was the same audiologist who did my balance test who would map my implant.

First, they did an impedance test on the implant, the values were raised a bit since the operation but that was entirely normal according to the audiologist.

Then we continued on to programming the electrodes. The middle tone came first, then the higher tones with 2 electrode intervals and then the lower tones, also with 2 electrode intervals. After that the tones in between were filled in.

At first I didn’t hear anything, but I could sense something… touching my nerve. That was a really weird sensation, and it didn’t feel like hearing something at all. The minimum threshold was set whenever I felt a sensation, and the maximum threshold was when the sensation became a bit overwhelming. It was quite a weird experience.

After that, I got switched on. I didn’t really hear anything, but I could sense things. I could sense the papers moving, knocking, clattering, the audiologist moving, the unpacking of the boxes (There are a LOT of boxes with the Sonnet… And such a big bag for such a small processor. I’ll post pics later.)

The audiologist told me not to wear my hearing aid for a month. I asked if I could wear my aid for my job interview later that day (2:30 pm. They hired me, by the way. Yay!) and she laughed and told me they’d make an exception for that.

After the job interview, I went home. I arrived home at around 2:50 pm and it was when I felt the neighbour’s dog barking that I started to realize the connection with the sensations and sound.

The rest of the day was rather uneventful, I downloaded an app on my phone to exercise the Ling sounds, trying to distinguish them. My boyfriend also helped me by doing some of the Ling sounds and me having to guess them.

The pictures and the video will follow later (I promise!), I’m too lazy to upload them now but I will certainly post them later.

Stay tuned!

1-week post-surgery appointment

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I went to the 1-week post-surgery appointment last Wednesday.

The surgeon took off the band-aid and removed the stitches from behind my ear. I could wash my hair that evening but was advised not to let any water enter my ear canal for at least another 2 weeks. The incision is very nicely done. I will post a picture of the incision area later, didn’t get the opportunity to take one yet.

I got implanted with the FLEX28 electrode and the Synchrony pin system according to the surgeon. I also asked if I could get a copy of the CT scan home with me next time.

I don’t have any side effects and I really feel amazing. No pain (just a little uncomfortable if I sleep on the implant side), no dizziness, nothing. My spit is still slightly blood-tinged if I draw back my nose though.

The first fitting will happen on August 25th! Looking forward to it!

The surgery

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I had my surgery last Tuesday, the 14th of July.

Surgery day

I had to be at the hospital at 8:30 in the morning, sober. I was put into a room with 2 other people, the 4th bed in that room remained empty. At 10:15 I went to the pre-surgery room for a last talk with the surgeon and at around 11:15 they gave me extra oxygen and then the intravenous meds knocked me out.

At 2:45 PM, 3 and a half hours later, I woke up in the recovery room. I had a giant bandage around my head and was feeling very hungry, but I didn’t have any pain. One hour later, at 3:45, they rolled me back to my room and I had visitors for the rest of the day. I could walk just fine, feeling really good, I wasn’t dizzy, nauseaus or anything, just very annoyed by the bandages around my head as it felt like my ear was folded over and then taped to my head under these bandages.

Picture of Pilla with a bandaged hed after surgery

Yay, I got implanted! Look at these lovely bandages.

Something I was really annoyed by, though, was the fact that I wasn’t allowed to eat anything after surgery. They explained that if you eat too quickly after surgery, you’ll throw up. At 7 o’clock in the evening, they finally brought me some food. I didn’t eat a lot since I was a bit scared to get nauseaus, but I was really happy that I got some food. One hour after eating, my stomach became slightly upset and it remained like that through the night. I was so glad I didn’t eat a lot despite being so hungry.

That night in the hospital was horrible. I couldn’t sleep with the bandages at all, and every hour a nurse came in with a small spotlight, either to change my IV meds or to check up on the other 2 people in the room. I’m quite sensitive to changes in light while sleeping, so anytime a nurse entered I woke up.

The next day

I woke up at around 5 AM (I didn’t sleep any more than 2 consecutive hours that night), hoping for the bandage to be taken off quickly. At around 8 o’clock they put me in a wheelchair and rolled me to the audiology department, where the surgeon told me the operation went smoothly. They took off the bandages and put a band aid over my scar. They also gave me an appointment for Wednesday the 22th for a check-up, where they’ll take off the band aid. After that, I got rolled back to my room and ate some breakfast. After finishing breakfast and becoming slightly nauseaus again, I had to walk to the CT department to have a CT scan taken of my head. After that I went back to my room all alone, almost getting lost in the hospital. Once I got back to my room, they ripped out the IV meds and told me I was free to go home. I ended up going back home at around 11 AM.

The next few days

I didn’t go straight home, since my grandmother wanted to take care of me for a few more days before allowing me to go home. I haven’t had any vertigo attacks, no taste disturbances, no tinnitus, globally I’m feeling really great. The nausea disappeared after the third day. I have never been in pain, haven’t taken any pain relievers since coming home either. My ear feels slightly full, and it’s still a bit weird to move around my head. My scalp has been itching a lot though, especially at the implanted side. Another fun thing is that if I’m yawning and then make some noise, I can actually hear some of the noise through the fluid-filled middle ear. Pretty cool.

I’m still spitting up a bit of bloody discharge on the 6th day, but every day I’m noticing less blood, so I think it’s healing pretty nicely.

Now, on to Tuesday. Once the band aid is gone, I’ll try to post a picture of the scar itself.