Heather Gilmer's Blogs

I started to lose my hearing at two years old due to a defective gene being sparked into action, making me very ill. It continued to worsen with the multiple ear infections I suffered as a child.  Today, I have a cochlear implant (CI) on my right ear. This blog follows the first six months since my surgery.

On February 2^nd, 2023, I took a big leap of courage and underwent cochlear implant surgery on my right ear.  Mixed emotions, anticipating the procedure. It was early morning, and I don’t think I slept much at all. While waiting to be called back into the OR, I anxiously gripped my boyfriends’ hand as he comforted me with affirmations.

It took me several years of being a CI candidate to proceed with the decision to have the surgery. Not only was I terrified that my unique medical conditions would interfere with the outcome, I also refused to accept that I was deaf enough to be helped with this device. Meanwhile, I was missing out on daily interactions, constantly asking for repeats, or shrugging them off because I didn’t want to be a bother. After more than two decades of living like this, I’ve had enough. I was ready for a change, and since hearing aids haven’t benefitted me, this was my only next option. So, with the support of those around me, I took a deep breath, put my fears aside, and looked forward to a brighter future with improved hearing.

The surgery went well. It was outpatient, so I was back at home within a couple hours of waking up. Although people who have this surgery often wear a head bandage for the first day post-op to protect the implanted site, I was one of the lucky ones who didn’t need to.

Overall, recovery was a breeze. The implanted side was very tender and swollen, but the pain was manageable by alternating Tylenol/Ibuprofen and using ice packs. Minus the first day, I didn’t have any issues with dizziness or imbalance. However, I was unpleasantly met with nosebleeds, constipation, and tinnitus (ringing in the ear) that was much louder and lasted far longer than what was normal to me. I was also extremely fatigued, another common side effect. It took about a month to fully regain my energy.

On February 24th (three weeks post op), I had my Kanso 2 activated. I chose this as my sound processor because I love that it sits entirely off the ear (something I always disliked about hearing aids). I started out with the strongest magnet since there was still a bit of swelling present, making it difficult to stay on. After a while though, the implant site became tender with that strong of a magnet, so I went down a couple sizes, and now it’s perfect! It still gets bumped off but not as often as it used to. The processor is also quite comfortable to wear. In fact, I’ll forget I’m wearing it sometimes (and you would too, since my long hair tends to cover it!)

I control my processor by using an app on my phone. This app includes the volume and other settings to make hearing in certain situations easier. For example, when I’m in a noisy place such as a restaurant, I can switch on a setting that limits the background noise to hear the people around me better. I also enjoy using my mini microphone, which brings the voice of one person directly to my ear. It’s especially amusing when they walk off with it still attached to their shirt, and I can still hear them talking!  

During activation, my audiologist switched on each electrode and had me listen to several beeps to get the sounds to where I can stand them. It’s important not to set them so loud that it makes me uncomfortable and jump like a few of them did, but they also shouldn’t be so quiet that I don’t notice anything at all.

Once turned on, voices sounded louder but normal when not covering my better ear. When I was covering it, they sounded robotic, a bit like Darth Vader. My audiologist told me she’s only seen three people who had that kind of reaction! This may be partially because I have Reverse-Slope Hearing Loss (RSHL), a very rare type of hearing loss that affects the low tones. Most people who lose their hearing lose it in the high tones before losing it in the lower ones. So, in their case upon activation, voices may sound annoyingly high-pitched and squeaky (think Donald Duck or Alvin and the Chipmunks). These people may also experience environmental sounds they’ve never heard before, such as a bird chirping or water running. These sounds made no difference to me whatsoever as I already knew what they sounded like. However, as my struggle is with the low tones, I noticed that I could hear the soft ticks of the wall clock again!

Getting activated meant the start of doing extensive hearing therapy (aural rehab). Just like people who need physical therapy to regain muscle strength after surgery, I had to do listening exercises to retrain my brain to recognize the sounds it hears. To do this, I downloaded various listening apps on my phone, read aloud to myself, and continued to do my normal listening activities like watching shows and conversing with others. The more listening activities I participate in, the greater success I’ll have with my implant. While doing my rehab, it’s a good idea to block out my left ear every now and then. This forces my implanted ear to do the work without relying on support from my better ear.

Prior to my CI, I relied solely on my left ear for speech discrimination. My right ear was completely useless for that, hence why I wanted the implant on that side. Whenever someone spoke to me in my right ear alone, I’d flinch. It sounded awful, like muffled screams. I loathed getting my hearing tested for this reason. Every word that I was given to repeat, I’d hopelessly shrug and say, “I can’t do this.”

Ever since my activation, I recognized the impact the implant has made. It’s no longer like it was before. I can stream music and videos via Bluetooth without wanting to rip my ear off. I can understand speech in an ear that hasn’t been able to achieve that in ages! No more flinching, no more screeching voices. Just clarity: a true miracle!

As you’re reading this, please keep in mind that a cochlear implant is not an immediate fix, nor should it ever be considered a “cure” for deafness. It’s an assistive device that requires tons of patience, practice, and perseverance. Six months later, my hearing is still far from perfect. I still need closed captions to follow what is being said on TV, and I still frequently ask for repeats when I can’t understand something. Since I chose to implant my worse ear first, and the ear hasn’t received stimulation from hearing aids, my journey may take longer than those of the opposite.

One week following my activation was my first mapping. During these appointments, my audiologist adjusts the electrodes of my processor based on the feedback she gets from me. After she finished making the adjustments, I was tested in the sound booth. First, I raise my hand for each beeping sound I hear. The high-pitched beeps are always the easiest to catch due to my RSHL. Then, I get tested on my ability to understand the words and sentences that are being said by repeating back what I heard. I wasn’t expecting much of a difference so early on and was pleasantly surprised when my word recognition score jumped from 0% to 27%. This boosted my confidence so much that when I was tested again three weeks later, I hoped for another increase. Unfortunately, the score dropped to 10%. I remember sitting there, utterly shocked and confused. “Only 10%?!,” I questioned my audiologist, making sure I heard that number right. “How’s that even possible?!” She explained to me that sometimes scores fluctuate, especially during the first few months when your brain is adjusting to a whole new way of hearing. She told me to be patient, keep doing my aural rehab, and it should improve more with time. But I was still feeling disheartened, so I reached out to a cochlear implant support group on Facebook. There, I was reminded that the booth is an artificial tool, so the scores don’t necessarily mean a person is hearing better or worse. Instead of basing my progress solely on those scores, I should focus on my ability to hear in real-world situations. After all, that’s where it matters the most. Shortly before this mapping visit, I was out walking my dog, and a lady pulled up her car to compliment how cute he is. Despite the background noise of other cars passing by, I understood every word she said. It was a proud CI moment for me. Every day, I continue to have moments like this. Family and friends have noticed small improvements in my hearing, too, telling me I’m hearing them better than before I had my CI.

When I went in for my most recent mapping at six months activated, I immediately felt that the words and sentences were coming to me with so much more ease. I only scored 14% with the words, but my audiologist saw massive improvement in my ability to catch more of the vowel sounds. For example, if the word was “bake”, I could’ve said “make”. With the sentences, I was able to use both ears and scored above 30%, which was also a huge jump from my previous two mappings when I didn’t get any right. I even performed better with the beeping test, catching more of the lower toned beeps that I normally miss. So slowly but surely, I am making progress with my CI. Especially coming from a word recognition score of 0%, anything is better than that!

Was getting a cochlear implant worth it? Absolutely! These last six months have been a rollercoaster of a ride. But through the ups and downs, I’m loving every minute of it. Although I still have a long way to go in this CI journey, I’m grateful for what little hearing it’s given me back. Each day I wear my processor, I get a glimpse of how amazing this technology is. Looking forward to seeing where it takes me in a year and beyond!