Blog

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

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!

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.

Today, I had a nice day out with my mother and sister.  We went to a restaurant – Cactus Mexican restaurant in Madison Park (Seattle, WA) and then a Starbucks.  It was extremely nice to get out and not feel so much like a patient stuck in the house.

I am eagerly anticipating my post-op appointment where the surgery site will be checked out – doing VERY well now.  I’m also looking forward to activation day – April 1st!!!

Right now, I’m still in the recovery phase.  I’m glad to be moving around more now.  But the whole team in the hospital was wonderful and very nice.  I am very lucky to have received such a high level of care.  But I’m getting anxious for the future of course!

My ear feels numb and there are tingly feelings at times.

Today, I’ve been very paranoid about low frequency hearing preservation.  The outcome varies in this regard – even if I lose residual low frequency hearing, the implant can fully compensate for those sounds electronically as it would already for the high frequencies.  I am on a high dose of steroids to preserve the low frequencies as the hybrid is designed to optimize.  There is no guarantee.  Either way, I will be fine.

As for the day the implant is first turned on, I am expecting a bunch of mechanical sounds and beeping.  That day and quite a while after that, the sound often sounds mechanical while the brain makes sense of the new sound.  It’ll be very important for me to follow a rigorous retraining program – formal auditory-verbal therapy (AVT) as well as informal training (books on tape, for example, where I would follow the text in the book and listen to the audio simultaneously).

I am thrilled I have given myself time for this process, as the beginning, especially, is essential to the best possible outcome.  The best outcome is different for everyone and nothing can be known for sure.

I do feel confident things will be better – but how much better remains in the air.  But I’m okay with that as I am glad I did this surgery no matter what!

If I hadn’t done the surgery, I’d be thinking “what if?”

There may be an activation video or there might be one after the activation.  The doctor doesn’t encourage such videos because they can promote unrealistic expectations when it is still the very beginning of the process.  I feel I have a good grasp of expectations: my knowledge that it won’t sound normal yet.  But I will want to do what feels best for everyone.  That may mean I keep the day low-key and write about it afterwards.