Wednesday, April 10, 2013

Playing Ping Pong in the Dark

Today I'm three weeks out from having cochlear implant surgery. I'm scared, excited and a bit nervous. When we made the decision to go ahead with implantation, I qualified for implants in both ears and fell well within current FDA indications for surgery.

That's changed a little bit.

You'll remember from this post I described my ongoing struggle with fluctuating hearing loss and the progressiveness of this disease. My fluctuations got closer together, lasted longer and stopped responding to any kind of treatment. In February, my doctor and I assumed the hearing in my right ear was never coming back.


It has.

Around three weeks ago, I started fluctuating again – on the upside! Improvements would always be preceded by terrible tinnitus spikes and sound distortions, leaving me couch bound, clutching my head. Each time, once the tinnitus cleared up, my hearing was noticeably better. Why? Who knows? This disease is not only idiopathic, it is also ruthlessly difficult to predict.

In fact, it is this endless game of ping pong that forces many of my fellow sufferers to seek treatment for anxiety or depression.

Anyway, the improvements got closer together and lasted longer, and now I am officially back in the hearing world. With a little bit of help from a super cool hearing aid, I hear the birds, I hear the wind and I hear my son's voice! (I can hear without it, but the aid makes things clearer and more detailed.)

So, I called my audiologist.

"What are we going to do?" I asked.

"What do you want to do?" she asked back.

We talked about how long we think I have. The pros, the cons, the risks, the benefits of a CI.

In the end we decided to proceed with implanting the left ear.

And it all goes back to that "ruthlessly unpredictable" thing.

We know I will fluctuate downward again. We know this. What we don't know is when. Or for how long.

This last "episode" lasted five full months! What will the next one bring? Will it be tomorrow? Next week? Next month or year? No one knows. What will be happening in my life when the ping pong ball bounces back to the "deaf side?" Will I be in the middle of an important project? Someone's wedding? On vacation?

Going ahead with the cochlear implant is our best shot at giving me some stability when the hearing decides to go south again. We don't know how well I will do with it, but we know it will be better than hearing nothing at all.

My hope is that I surprise everyone with my guts, spunk and moxie and become a "superstar" of the CI world. The reality is probably much more boring than that, but I'll keep on hoping!

Until then, I have three weeks to wait, wonder and worry – and that is a whole other post!