As the journey continues…

It’s interesting how “wow” moments just occur at random. When I’ve watched video clips for example, I’ll catch something that I haven’t before.

I’m blessed that this device has been extremely successful in all of the major ways – the auditory nerve is able to process all the new sensations sent to it and respond with sound, I am able to hear all the frequencies, I am successfully working on my comprehension skills to adjust to hearing these new frequencies with the device (it’s a continuing process that lasts forever really). I also have developed excellent visual compensation tools to use in conjunction with auditory tools to lead me through life. There will always be a benefit to using combined visual and auditory communication – seeing someone’s face and hearing them speak, but the auditory will be so much better now. Also, I’ve so far retained residual hearing so I can continue to amplify my low frequencies rather than depend on new signals from the device to compensate. This is the hopeful outcome of the new hybrid set up.

Right now, the biggest struggle is not what you would think, the adjustment to hearing and the aforementioned, but it’s with the component of the device that amplifies the lower frequencies like a hearing aid does. The acoustic component is still uncomfortable and I have tried 12 different ear pieces in the process to find a comfortable fit. Hopefully, the company will release one that is more comfortable soon. But it’s ridiculous that this continues to be the most tiring part of the process as it’s one that hearing aid companies solved years ago.

In the past, comfortable earmolds for hearing aids were a given. Any issues were a minor fix. With my new hybrid CI, I find myself having to wait months for comfort.

I also now find myself inching closer to coming home to my normal environment, which will be new because of this device. “How will I function?” I often ask myself. I will need to give myself ample time to adjust which leads to a need for continued patience.

Hybrid CI “normalizing” but still very new

Hello everyone!

I’ve been processing and handling a lot of new information with this hybrid cochlear implant!  I haven’t posted with fervor recently because I’ve needed quiet time or rather semi-quiet time in a loud world! ;-).  I’ve been enjoying spending time with my family and letting the adjustments take place while also being engaged in auditory training.

The sounds of the implant are definitely “normalizing.”  Many still sound odd, but rather than throw me off, they are incorporating themselves into my auditory soundscape and enhancing my understanding.  I have been able to regain a lot of energy that was taken up with this device – listening to the new sounds and having my brain interpret them has been quite the energy drainer.  I’m not back at 100%, but I’m extremely well and feel very good!

I just have to remember that this entire thing continues to be a process.  However, the nice thing is that the experience isn’t so overwhelming as it once was that I am able to more readily navigate through my life with the new experiences.  It took a lot of time to reach that stage where I could do that.  I’m beyond thrilled!

Thank you to all of you who have been reading this blog and my postings over the last few months.  It’s been quite the journey and one where no clear answer lies ahead at any stage of the game!  But I’m thrilled to have undergone this process to enhance my life!

Sentences understanding nearly doubled since last month!

Today I had a three month post-activation follow up and since last month, my understanding of sentences has nearly doubled!  I was absolutely shocked and my audiologist was thrilled.

There are many tests conducted during a session that include sentences, words in isolation, etc.  I wanted to keep this post simple and say that I’ve improved so much since last month and getting objective results is so valuable because at times during this journey it’s hard to gauge exactly how well things are going.

But needless to say this is thrilling information!  Other scores also continued a tremendous increase and I look forward to future improvements.  My next test will be next month!

Whoo hoo!  This surgery was definitely worth it.  I have been told that the one-year mark will show just how great this technology is, as the brain will have had ample time to adjust.  It then continues it’s adjustments and improvements continue!

Also, even with the Hybrid, the residual hearing (existing hearing) levels are very much subject to change.  I’ve had mild changes that have not negatively affected my progress and have been viewed as normal.  Some people lose no residual hearing, while others lose some, and some lose all.  But regardless of what happens, there will be improved understanding over my preoperative condition.  Also, I implanted my worse ear and thus my better ear (better before the implant!) is safe from anything that might happen in regards to natural, existing hearing.

This has been quite the journey, but as I said earlier, completely worth it all!

Maddening to wait. Scary experience this morning!

Patience can sometimes run short as I wait for increased clarity and understanding with my device.  But it takes time!  The length of time is variable and cannot be predicted well.

After 6 months, there should be noticeable improvement and certainly after a couple of years.  Already I’ve noticed improvement and I’m just shy of three months.

It gets better with time, but getting where one wants to be or reaching potential takes patience!

This morning I had a scary thing happen that was truly frightening.  I had an onset of this roaring noise (tinnitus is a medical condition that is not harmful and is quite common – often described as ringing in the ear).  Well, I had an onset in the implanted ear, which hasn’t had much issue with tinnitus.  But it did this morning!  Not only that, but my residual low frequency hearing seemed to be fluctuating.

Right now, everything has pretty much normalized and my hearing is fine.

I have an appointment with a doctor today as I immediately contacted the audiology clinic after my experience. It’s always good to contact one,’a doctor if something strange happens.

But it’s experiences like this, with a new device, that make it scary at times in the beginning.  As time goes on, things stabilize and the expectations are more predictable I believe.  The Hybrid itself, with retaining low frequency hearing (hopefully) rather than the traditional cochlear implant where that isn’t the focus, is a newer technology and thought-process in regards to this retention of existing hearing.  There’s much more hope for residual hearing than there is for the traditional cochlear implant, which from the start is programmed to replace all hearing.

Reflections and Change

2018 UPDATE: Another post from 2015 that remained unpublished until now!

As I no longer feel so like a patient and have more free time to think with clarity once again, I’ve really spent time reflecting on the past and thinking of the future.

I am more empowered and willing to help myself when I need help. That includes asking others for help in getting my needs met.

My energy has come back with certain levels primed for handling even more facing my true self. Being hard-of-hearing has been such a burden largely because I’ve wanted and hoped it would disappear. But despite the reality being that I will always deal with it, I feel more empowered.  I have persevered even when people said I couldn’t.  I was told by a well-respected professional when I was very little that I would never learn to speak.  Well, I certainly did!  I was lucky to have supportive parents that trusted their instincts and didn’t believe this person’s opinion, regardless of her “status.”

A message to myself:

“Accept me for all of me. For who I am truly, not the fantasy hoped for.  I am enough and offer far more than you realize. Partial hearing loss is just a tiny part of my being. It can inform and help others who struggle with their own challenges.  Thus, it empowers me to be helpful to both myself and others.”