Perspectives Absent of Sound

New Year, New Ear!

I can’t believe it’s been just over 90 days since my cochlear implant surgery. So much has changed and continues to change with my hearing. At first everybody sounded like Darth Vader. As of today, voices still sound deep, but no longer robotic. I am able to distinguish between male and female voices. I hear sounds in nature (birds, leaves rustling, ocean waves crashing, etc.) so crisp and clear – Actually, it seems better than I remember with excellent hearing! I’m still working on music – I listen to the old school station (songs I know) and I am able to name tunes pretty quickly, but they don’t sound the same…..YET, I have hope!

On the flip side, I am getting used to having a dominant ear, whereas before both ears just sucked – I didn’t have anything to compare to or feel “off” about. Now, my implanted ear is my dominant ear. So much so, I don’t like wearing my new hearing aid for the other ear. I really only wear it to keep the nerve stimulated with sound and it does give me a little boost when I’m talking on the phone or listening to audiobooks.

My sparkly new ReSound hearing aid

Speaking of audiobooks……

If you recall, in my last post, I was just getting back behind the wheel. I decided to make the best use of my time by using the two hour commute (back and forth to work) to do some “ear rehab”. Well, I discovered audiobooks – I am in LOVE with AUDIOBOOKS…….Why?! ……..Because, I CAN FINALLY HEAR THEM! I am close to finishing my 5th audiobook – I started the beginning of January and Yes, I’m so addicted! I never thought I could enjoy something like this. I love reading and never understood how anyone could enjoy hearing a story, but now that I can hear, I GET IT!!

Sporting a Cochlear America head wrap on the beach in the Cook Islands – I have my Kanso on underneath the wrap.  It was great to hear the ocean waves!

We just returned from vacation and I share, in the video link below, all the things I can hear and my progress the last several weeks.

Happy Hearing Everyone!

Six Weeks Post Op

Let me start by saying this journey is surreal! There is no way I could have fathomed all that it has involved physically and emotionally. First, you go through the surgery aspect and you’re recovering from a major surgery (outpatient, but still major – you’re getting your skull drilled!). My energy level was low for a good 3 weeks, my body was healing. All I wanted to do was sleep and hope to wake up with eyeballs aligned. Then there is the activation phase and your acclimating to a new way of hearing and all the energy involved with rehab, which takes a lot of work to get out of (in my case) the robotic hearing stage , which I’m hearing less of every day. I was also hearing a lot of strange sounds coming from my implanted, supposedly ‘deaf ear’ the first week I was activated…..hard to describe, but I swear I heard a full band playing in my head one night! I found myself checking my ear to make sure the processor was off my head because I was hearing like it was still on – pretty freaky! Both surgery and activation have their own emotional aspects to deal with too, BUT……Here are some pretty cool ‘hearing observations’ that have happened since activation three weeks ago:

  • Sitting in a noisy restaurant with my processor on and not getting blown away like I did with hearing aids
  • Hearing a helicopter before I see it
  • Hearing my dog’s nails scrape against the pavement
  • Hearing my husband walk in the front door and yelling, Hello! before even seeing him
  • Listening to my “old school” station and naming the tunes
  • Hearing a co-worker talk outside my office door (I thought they were talking to me, so I responded) – They popped their head in shocked because I heard it.

(these are just a few off the top of my head)

So……today is six weeks post op. I’m on my second day of driving to work and slowly getting my ‘mojo’ back. I am not pushing the process and trying to force tomorrow, rather I’m enjoying a new normal of hearing and looking back at what is becoming a faint memory of eyeballs rolling like slot machines. I realize this struggle is part of my story, the story I am now able to share with you!

First day driving to/from work – 6 weeks post op

Ok, so there were some interesting bus stories the last few weeks!

Post Surgery Update #1

I have to say, this surgery (for a cochlear implant) has been one of the toughest experiences of my life.

Before photo – Little did I know what I would be up against!

From the moment I opened my eyes (after surgery), it’s been one dizzy trip! I keep hoping – today being one of them, that I wake up and my eyeballs are stable. The pain hasn’t been as bad as the constant state of drunkenness I feel.

Not a happy camper here……

I have also experienced some strange sounds lately in my implanted ear, a loud humming sound that goes from low to high and then disappears – kind of weird. I’ve noticed when I bite down, my bite is off – bottoms and tops only meet on one side of my mouth, a bit annoying and my jaw aches from it. It’s strange to not even be able to feel your ear when you touch it…..I mean, my finger tips feel it, but my head doesn’t. I learned that your head/hair gets sore from laying on a pillow for too long, who would’ve known?!

My husband took this photo of me and the dog doing a lot of napping

I’m also adjusting to being completely deaf in an ear I use to have some hearing in, albeit bad and now relying on my other bad ear to take in the environment around me. There are just so many emotions I’m grappling with from the thoughts of how the new processor will look on me when I wear it, how well will I hear with it, to was all this worth it? Stay tuned as I sort all of this out – On to week two!!

A New Path

Today marks yet another step in my hearing loss journey. As it happens, just when you think the dust has settled a bit and you’ve “got this”, something jolts your complacency back into uncertainty.

About a month ago, I went for my annual hearing check-up. I was happy to learn my hearing has been stable the last few years, but what has changed (greatly) is my speech recognition scores. In one year, I went from recognizing 7 out of 10 words to only being able to decipher 3 of 10 – not very good. So what does this mean?

Here I am getting ready for the hearing test

All the wires…..

Well, amplification can only go so far and that is what hearing aids do – they amplify sound and make the world a very loud place! Here’s my struggle, I can sit in the middle of a loud movie theatre and not be able to distinguish what is being said by the actors, which is why I use a captioning device when I go to the movies. So it’s not about things being loud(er), it’s my inability to understand what is being said……Did I mention I use to be able to name that tune in under 10 seconds?!…….So what now?

It is my understanding that hearing aids will not be able to help me with speech recognition, but a cochlear implant will. I have a friend who said her speech recognition went up to over 90% with an implant, that’s huge! Another friend who enjoys music again – Oh, how I miss music….

If you’re like me, I was clueless how an implant works. I did some research and learned there are two components to a cochlear implant – an internal and external. The internal (implanted) portion has a receiver and tiny electrodes, which is imbedded under the skin behind the ear. The electrodes are surgically inserted into the cochlea.

Here are the two components from the brand Cochlear America

The external portion, includes a speech processor that is connected to a headpiece by a cord – It magnetically attaches to the surface of the head behind the ear at the spot where the internal portion of the implant is located. The headpiece has a transmitting coil that sends the signal from the speech processor to the internal part of the cochlear implant. It’s pretty darn amazing technology!

To be honest, I’m still wrapping my head around the idea. Like any surgery there are risks that have to be considered. For one, I may lose what little hearing I have left. There could be injury to the facial nerve. I could develop attacks of dizziness or vertigo and those are just a few. There is a lot to consider.

Here is information on two of the 3 brands of C.I’s – Advanced Bionics and Cochlear America

Over the course of the next several months, I will be sharing this walk with you as I navigate through the decision making process. If you have a C.I. please share your experience, I would love to hear from you!

Summer of Friends & Family

It’s been a whirlwind summer and hard to believe we are now into August, Wow! I’m trying to absorb all the wonderful things that have come my way the last two months. When they say you need to stop and smell the roses….Well, that’s what I’m doing right now because I don’t want to forget what an amazing summer this has been!

In June, I went to Salt Lake City, Utah to attend my first HLAA/Hearing Loss Association of America National Convention (it was also my first visit to Salt Lake) 

– Four glorious days spent with people like me, hard of hearing. It was the first time (since hearing loss) that I felt so completely comfortable and at ease. I wasn’t worried about ‘hearing’ or ‘not hearing’. Not sure if that makes sense to those of you that are hearing……..On any normal day, I’m surrounded by people who forget I don’t hear very well and the burden is on me to catch everything being said – it gets exhausting. So for 4 days at the HLAA convention, everything is hearing loss friendly –workshops and evening events all captioned – the stress of having to hear every word is gone. On top of that, I hung out with and got to know some of my hearing loss friends better as well as meet a bunch of pretty amazing people!

I kicked off the month of July with our second hearing loss chapter support group meeting in Tempe, Arizona, which I lead for the Phoenix area working adults. 

We had a really good turnout and an engaging audience of people that came to learn about a technology lending program we have here called AzTAP/Arizona Technology Access Program. It’s because of this wonderful group, I am able to find support and learn about programs in my community. The icing on the cake is meeting people and growing my “tribe” of hearing loss friends. 

Closed out July spending time in Indiana with my family (it was my husband’s first visit). The week was filled with activity and lots of wonderful food – Speaking of, we took my husband to an Amish home for dinner and we indulged BIG TIME! 

As a matter of fact, I don’t think I can ever have another slice of store bought bread, because the Amish bread we had sent my taste buds to another dimension! Aside from the food, I can’t tell you how special it was to have time and reconnect with my family and meet up with old friends – some I haven’t seen in over 10 years! 

It’s definitely been the summer of friends and family. I have some really exciting things coming in August, which I will share with you SOON!

Stay tuned……

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