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Wow

Thanks everyone for the support!  I really have been embracing the positive energy as the last few days have been a fluctuation of overwhelm and going with the journey.  I often am tired as getting used to these sensations and recovering from surgery are still very much occurring.  The worry that accompanies the unknown has seized me and left me worried and bed-bound at times.  But overwhelmingly, I’ve been able to take it all and continue on.

It can be hard to tolerate sensations that feel like jabs of nerves, especially when it occurs all at once as in noisy environments.

But I keep reminding myself that my brain is learning and this is par for the course.  I cannot know or control what will happen.

I am so happy that I chose this.  I wouldn’t do it any other way.  I am thrilled I got this surgery and am getting to go on this process.

Thanks again for the support.  It has been most helpful in difficult times!  I still constantly feel blessed and I will move forth. 🙂

Tomorrow is my first formal AVT (auditory verbal therapy) appointment where I will receive training.  But I’m not sure what the training will be like so early in the process as what I am experiencing is so much sensation.  On Wednesday, I have my second programming appointment and I’m looking forward to that appointment… well, just as long as I’m not asked “what” things I’m experiencing are!  That’s very difficult at this point!  Even determining if something is becoming more of a sound is difficult at this point.  But thankfully my audiologist has bilateral CIs and was very optimistic and understanding last week when I had my initial activation.

Cheers!

Patrick

Hard to wait…

It’s definitely hard to wait for the next programming appointment, because I’m dealing with all of these sensations and getting used to them — or not so much yet!  I’m just eager to have more of a black-and-white process, but that’s not going to happen.  The auditory nerve getting stimulated in new areas, and sending signals to the brain, and the brain figuring out what to do with this input is all new.  This all does make sense that not everything I’m getting is auditory yet in format.  As my last blog post mentioned, I’m getting all kinds of sensations at this point because it is all new.

This is because an implant is not like a hearing aid where the volume is amplified at different frequencies according to loss, but rather a direct connection to the auditory nerve – with such connections being new and not understandable by the brain yet.

Hearing aids are SO different!  They are black-and-white compared to cochlear implants.  Apples and oranges!

I’m trying to make a clear post, but there’s a lot of stuff happening!  Wow!  Any rational thinking is difficult to do!!!  What’s happening now is what’s happening.  So I just have to let it happen ;-).

WOW! First day with implant activated!

Hello everyone!

I’m so lucky to have the support of my family and friends.  Thanks to all of you for sending nice messages and thoughts my way.  I appreciate it more than words can say!

Today, I had my implant activated for the first time!!!

What a BIZARRE day!!!  It’s like no other day in my life!

Today, the implant was set to a very low level so that the brain does not become overwhelmed with sounds.  Interestingly, sounds never heard before can come across as sensations as well as sounds.  I noticed that as the implant was programmed, I had a big combination of feelings and sounds.  Feelings such as a flooded magnetic feeling across my face, shivers on my arms, and calming sensations came through with the implant as my brain had never had the chance to be stimulated for these sounds – so they were not all yet perceived as sound.  Very strange indeed!  Nothing else in my life has been like that!

My auditory nerve, which is stimulated by the implant, and which then sends the signal to the brain is very functional!  There’s always a risk that function won’t be restored.  My audiologist and I were very pleased!

We worked on some sensations which twenty minutes later became sound.  This experience was a wonderfully bizarre one.  My audiologist has cochlear implants and so she was able to relate to the experience!!!

I will be at this level for a week and my brain will be making changes every minute essentially as it figures out how to perceive the new sensations.

I have a formal training session (called AVT – auditory verbal therapy) set up for Tuesday, the day before my next programming (called a MAP), and this will help train my brain in a formal way to recognize sounds.

I plan to go weekly for formal AVT training.

This is all bizarre and hard to write about.  My mother was at the session with me.

I am just filled with wonder, hope, and confusion 😉

I look forward to the future and improvements as they happen.  I have learned that this process cannot be rushed.  I am glad I am taking initiative to get training formally and also use training software and resources to help my brain along.  I’ve been using such software and it’s surprising how the brain works and changes the sensation.  I have already experienced positive changes!

I’m lucky I can focus on this aspect of my life for now as the beginning with an implant is a crucial time in terms of auditory development.

Hooray to my auditory nerve and brain! 😉

The retention of my acoustic (existing low frequency) hearing helps the entire process as well.  I don’t need to learn those sounds and can focus on the high frequencies!!!

Much love,

Patrick

YAY! Retained residual hearing after surgery!

I have great news!  Today I had a hearing test that showed I retained the low frequency residual (existing) hearing that I wanted to retain, after the cochlear hybrid surgery.  This tests what the level is right now, not what it may always be.  There is a risk of losing it that remains even after surgery.  But I’m thrilled that today I have low frequency residual hearing and thus will be able to benefit from the enhanced combination cochlear and amplification technology provides for people like me who have high frequency hearing loss, but great low frequency hearing.

Before the hybrid device came along, retaining low frequency residual (existing) hearing was not the focus as the conventional surgery was designed to cover the entire frequency range.  The new surgery offers the possibility of keeping low frequency hearing providing the possibility for people like me to keep my hearing while enhancing the higher frequencies with the implant.

All I can do is take it one day at a time.  If I do lose residual hearing later, the implant can also accommodate me by providing a full range with the implant exclusively.  If that happens, the results still would grant hope for a great experience.

The next step of this journey continues tomorrow as I get the implant activated!

Fatigued thinking

Today marks seven days since I’ve had the hybrid CI operation – the device has not yet been turned on.  This will happen on Wednesday.

Tomorrow is a post-op appointment where the incision is checked, etc.

Anyway, I’ve had pretty good energy up until today.  I just had to sleep.  My brain felt very discombobulated and I was just fatigued.  Thankfully I was able to sleep in quite easily and have peaceful time to myself.

I think everyone has a weird time post-op with any surgery.  The body is adjusting to life and waiting for everything to heal.  I’m also waiting to start the auditory relearning process and figuring out how I fit into this world as I’m able to focus on that for the next few months.

While I enjoy Seattle, I do look forward to life back in Los Angeles.

But this journey is necessary for me to do, because the potential benefits are incredible.