6 Months After Switch-On: Slow but Steady

Is it possible for a turtle to run?

These days, I am feeling rather like a turtle that just wants to get to the finish line ... yesterday. But my little turtle legs simply will not run fast enough.

What does the finish line mean for me?  This is my hearing wish list:

• Understanding speech without lip reading.  Easily, without effort - no matter who is speaking, and whether or not I am concentrating.

• Being able to talk on the phone without panicking.

• Understanding and appreciating music.  Being able to make out the lyrics the first time I hear a song, without having to memorize the words and play it again and again.

• Auscultation of lung sounds (listening to breathing with a stethoscope).  

• Improved speech (I am self conscious of my "deaf accent").    

A parallel universe?

I have been struggling for a few weeks with a case of writers block.  So many people have been asking me to update my blog and describe my experiences these last 3 months.  I have sat down in front of my computer aiming to put together a perfectly worded, eloquent, descriptive summary of my journey thus far.  But I just can not seem to do it. 

What can I hear?  What can't I hear?  What do I want to hear?  Let's not forget what I don't want to hear (if I had a dime for every fart joke I've heard, I could retire!!).  It would be easy for me to come up with lists.  

However, I want to put together more than a bunch of sounds lined up neatly next to bullet points.  Part of the problem is that my experience drastically changes from day to day, from hour to hour.  I could blame this on my frame of mind, my fatigue level, the settings on my CI, the person speaking, amount of background noise etc....that is a whole new list. 
   
Things change so much, so often, that attempting to accurately and concisely capture how things are going is difficult, if not impossible.  A post I would write after a particularly bad day would sound very depressing.  I fear coming across like an ungrateful, negative person.  On the other hand, if I were to write a glowing review of all the amazing progress I have made - this would offer up a skewed perception of my reality.  Although, it would be what most of you would want to hear. 

On top of all that, I have so much to say, that the thought of attempting to put it down on paper is overwhelming.  One of these days I will tackle it! 

For now - I have decided to try to answer a question that was asked of me the other day:

"If you could change one thing about yourself, what would you change?" 

I think the answer might surprise many people.  I think I surprised myself!

Day 18 After Switch On: Patience Is Required!

I have been a bad blogger!  An update is long overdue.  I apologize for that.  To be honest, I have been waiting to feel more positive about things, so that I did not sound like a negative, ungrateful complainer.   Everyone has been so wonderful and supportive.  They hold high hopes and expectations for me, and want me to achieve my hearing goals.  I feel like I would be disappointing them if I reported the reality of my experience these last 18 days.  I really wanted to be able to share uplifting, miraculous accomplishments, like : "I had my first phone conversation!", "I could understand the radio in the car!" or "I could understand you without lip reading!" and so on...

What I need to be telling myself - OFTEN!

Don't get me wrong.  I am doing okay.  The CI seems to be operational, and doing what it is supposed to do.  I am thankful for that.  I am sitting outside writing this post and can hear the birds chirping, someone hammering a few houses away, and my cats meowing at the window.  That is pretty miraculous in itself.  But I am still not able to understand speech without lip reading.  Words and sentences are like unintelligible blobs of sound - I can hear the voice, but comprehension seems unreachable, no matter how hard I try.  Too bad the CI did not come with an autocorrect feature like the iPhone! :)

Activation Day

Activation day was today! It went fairly smoothly.

As instructed by the Sunnybrook team, I am trying to keep my expectations low and my hopes high. I did not expect this to be an "Insta-Hearing" day (but I kind of hoped it would be!).  It definitely wasn't...and that's okay. It will take time for my brain to figure out all of this new input, especially the higher frequency sounds.

Positive: All 16 electrodes are firing properly! Oh, and I didn't electrocute myself! ;)

Not so positive: High pitched constant squealing in the background...kind of like this.  It is exhausting to listen to.  Hopefully it will go away soon. It might just be overstimulation of my auditory nerve.

I CAN still hear some voices, and random noises on top of all the squealing. Who would have thought paper rustling and keyboard keys clacking were so loud?!

I will write a longer blog post about today, once I gather my thoughts.  

Thanks everyone for your support. It means a lot! ♥  

Pretty amazing...

Here are the X-rays that were taken immediately after my surgery.  I was able to download them from MyChart.

"Caldwells" (posterior-anterior) view
(front view)

You can see the incision line with staples going across the bottom left of the X-ray.  The big circle is the receiver-stimulator part of the implant, which was set into a hole that was drilled into my skull.  The small circle on top is the magnet.   To see what the implant itself looks like and how it works with the external piece, click here.

You can also see the electrode array which was inserted into my inner ear (line coming out of bottom circle).  According to the report, the "right cochlear implant wire lead is seen taking nearly one full turn of the cochlea".   This is a great news!  This means that they were able to fully insert the electrode.  Sometimes the surgeon is not able to get it all the way in (for a variety of reasons, usually related to abnormal anatomy).  If this happens, sometimes the results are not as optimal as they usually have to turn off some electrodes.

What took so long?

A cochlear implant (CI) is a pretty huge deal.  The decision to go through with it will probably be one of the biggest I will ever make in my life.  

After reading about CI technology (especially marketing material from CI manufacturers), and watching YouTube videos of activation experiences, the choice seems obvious.  They pop it in your head, switch it on a month later...and then it is like magic!  You can hear!

A no-brainer, right?

As with any decision in life, it was important to weigh the pros and cons.  A CI is not an impulse buy.  It is irreversible surgery.  There is no going back and changing your mind.

At one end, I have my safe place.  I have scraped by for many years with my trusty hearing aids, excellent lip reading skills, as well as ever patient and helpful family, friends and coworkers.  Yes, my hearing loss has worsened over the years, which has rendered life and work tiring and annoying, but at least it is comfortable.  I know what to expect, and have a list of strategies to fall back on.  I do not really know anything different.  This is my world - I have come to accept it.  

At the other end, is the great unknown.  Worst case scenario: going through with the CI has the potential to make things much worse (continue reading for more detail...).   Best case scenario: I could be able to understand speech without struggling, talk on the phone, and even appreciate music without lyric sheets.  This seems inconceivable to someone like me who has never been able to do any of these things.  

A person who has lost their (normal) hearing later in life may be more willing to accept and undertake risk.  My comfortable place would probably drive someone else INSANE.  They would be more willing to purchase an one way ticket out of it...no matter what.

With all of this in mind, I set about doing some research.  There is an overwhelming amount of information available on the internet: some biased, some factual, and the rest in between.

1 week post op...

It has been exactly one week since the surgery.  Hard to believe.  Time has gone by fast, but slow all at the same time.

I am doing okay overall.  Maybe going a bit crazy because I am not used to sitting around.  It is definitely an adjustment.  Especially since it is spring time, and therefore gardening season!  I am itching to get out there and start separating my perennials!!  Nothing like digging in the soil after a long, cold winter to make you feel productive and lift your spirits.  I have hired 2 talented ladies from Girls in the Garden to get things started until I am allowed to bend and lift.  

The worst issue right now is tinnitus and a feeling of pressure behind my ear.  It is equivalent to a really bad headache localized to the right side of my head.  Which is accompanied by a symphony of ringing, roaring and buzzing that reaches a crescendo, then wanes after a few minutes.  I highly doubt that anyone would want to attend this concert...

It dramatically worsens if I bend over, get up too fast, and/or when my left hearing aid picks up a loud noise.  Therefore, I have been leaving my hearing aid off most of the time and will need to avoid busy, loud environments, at least for now.



DISCLAIMER: If you are queasy about blood or staples etc. do not scroll down or click "Read more".  I have posted a picture of my incision with staples (1 week post op).  It is actually not too bad with minimal blood.  I have included it mainly to document the recovery process, and to help others visualize what their incision might look like 1 week after the surgery.

What is a Cochlear Implant?

A cochlear implant (CI) is truly a miracle.  Did you know that it is the only piece of medical technology invented so far which has been proven to restore one of the 5 senses?

A CI is different from a hearing aid, which simply amplifies incoming sound to make it loud enough for an impaired ear to hear.  Modern "digital" hearing aids have the ability to manipulate sound (called frequency "transposition" or "compression") to optimize the listening experience.  However, this is often not enough for those with severe to profound hearing loss, who may have no to few functioning inner ear hair cells left.  Unfortunately, I fall into this category.

A CI bypasses the damaged inner ear by sending electrical signals directly to the brain via the auditory (hearing) nerve. 

Thank you everyone!

I would like to thank everyone for all of their support!

I am so fortunate to have an amazing, supportive network of people around me: friends, family, and coworkers.

I have been the lucky recipient of beautiful flowers, delicious cupcakes, thoughtful cards, supportive words in person, via Facebook and/or by email.  So many people have sent positive thoughts my way and have told me often how excited they are for me.  It means a lot.

A few of the beautiful cards that I have received.

4 days post op...

Well, the last few days have been pretty good.  I have read so many different accounts of how people felt after the surgery, that it was hard to know what to expect.  At worst: extreme nausea and vertigo, bedridden for weeks, and/or complete loss of taste.  At best: back running marathons 1 week post op!

I was anticipating something in between (especially given that I do not really run marathons in peak form anyway!).

As expected, there is lots of pain behind my ear, where the staples are.  As instructed, I took the bandage wrap off the next day, applied polysporin and placed gauze over top.  After 3 days, I was able to leave the area completely open.  The picture below is how I looked after the bandage wrap came off.  It was a relief to take it off, as it was quite tight, and was pulling on the staples.

Day 1 post op

You can still see the arrow on my forehead pointing to my right ear.  We tried everything to get it off, but with minimal luck.  I eventually got most of it off with nail polish remover.

DISCLAIMER: If you are queasy about blood or staples etc. do not click "Read more" or scroll down any further.  I have included a picture of my incision with staples.  It's not too bad with minimal blood.  I have posted it mainly to help those who are curious about how much of their hair might be shaved off and/or how big the scar might be.

Surgery Day: Thursday, April 18, 2013

At long last, the day of the surgery arrived!   I had to report to Sunnybrook Hospital at 6:30 AM, which meant that we had to leave Brantford by 4:30 AM.

I packed an overnight bag just in case, but apparently most people go home the same day, unless you have complications (e.g. extreme dizziness, nausea etc.).  It is very interesting to read cochlear implant blogs from around the world and see the variety of care paths that various hospitals and surgeons follow.  Length of stay ranges anywhere from same day here in Canada, to overnight in parts of the UK or the USA, to 5+ days in Germany!  

I was not as nervous as I thought I would be.  I was actually able to sleep the night before.  I think I was just exhausted from working 7 days straight, going to Toronto for a pre operative appointment on Monday, then spending 2 days frantically cleaning my house and buying groceries so that everything was ready.  I was extremely paranoid that we would not get on the road on time, and/or would encounter traffic along the way.  Therefore, my poor cats had quite the shock when 3 separate alarm clocks vibrated at the same time!  I'm pretty sure my neighbours felt the earthquake as well!  

My Aunt Liz came to my house, then we drove in my car to pick up my Mom in Hamilton on the way to Toronto.  It was quite a dramatic drive - crashing thunder, flashing lightening and a torrential downpour.  I was so frazzled I couldn't even remember how to turn on my cruise control and windshield wipers to help out my poor Aunt who had never driven my Civic before.

We arrived at Sunnybrook without incident, and parked in the parking garage that is directly in front of the main entrance.  It was nice not to have to dash across an outdoor parking lot and get soaked.  20 minutes early!  A testament to my Aunt's driving skills.  We easily found the pre-admission clinic, registered, and settled to wait in the waiting area.

Sunnybrook Health Sciences Center

SIDE NOTE: Parking at Sunnybrook costs $25.00!  I suppose this is to be expected in Toronto.  It makes me feel silly for complaining about paying $60.00 a month for parking at the hospital where I work.

Entrance to the MGround drop off and pick up area for Surgical Services