I want to hear from both ears, it’s as simple as that. We have two ears for a reason, and I want both of mine to get sound. And that’s why next week I’m having an “explant” of my Baha 5 magnet and Cochlear Implant (CI) surgery. It’s been a long journey, here are the highlights.
In my mid-twenties I began to have some strange sounds and fullness in my left ear, tinnitus or ringing and some odd swooshing sounds like a sprinkler. I was diagnosed with possible Meniere’s Disease.
Following these symptoms, the bouts of vertigo followed. It ran the gamut between feeling slightly sick to my stomach and having to hold my head really still - to violent attacks that hit me like a bullet. I’ve been thrown to the ground from vertigo, literally. Once at work I was thrown off the toilet and on to the bathroom floor on all fours - a force to contend with that brought me to my knees in every way imaginable. The inner ear out of balance is not a friend to a normal life.
Many times, while lying on the floor, or in bed, or in the bathroom, or a combination of all three as the nausea hit, I would just wish I could lose my hearing in my left ear in exchange for a life without vertigo. Be careful what you wish for.
As the years went by and the vertigo got worse, my hearing tests showed damage. I was told I wouldn’t be a good candidate for a hearing aid, so I didn’t get one, and then inexplicably my hearing would improve for a time. But even that stopped happening and my hearing loss was affecting my life. My sweet Mom insisted I see her audiologist on a visit to Connecticut, she treated me to a hearing aid, and that was a life changer.
It was the little noises I appreciated the most. My hair moving against my left ear. The equal sound of both my feet hitting the floor. Leaves rustling, all the birds! It all goes away so gradually and when the sounds come back suddenly every single one is a gift to be treasured. My brain felt balanced again, like my left side was firing on all points again just with the addition of hearing sound clearly once more in my left ear.
As predicted, even in my non-typical case of Meniere’s, my hearing continued to deteriorate. A stronger transmitter on my hearing aid helped for a time, but once those little hairs in our ears are damaged, even the strongest hearing aids available cause sound distortion and word recognition is the first to be affected. I got super good at the Single Sided Deafness Dance, which has one cleverly positioning oneself to understand dialog, especially in a crowded room.
I have really great hearing in my right ear, even for, ahem, my age. Why can’t I just hear from that ear? I do, and I do amazingly well, but like a person who loses an eye loses depth perception, a person with SSD loses the ability to know where sound is coming from. I can hear that you’re calling me, but I can’t hear where you are and I can’t understand all you’re saying. For a person who loves people and talking and hearing stories and joking and laughing and give-and-take and puns and the nuances of language, this disability cuts to the core of what makes me tick. Parties exhaust me, work situations are difficult and something as simple as trying to find out where my husband is in our big yard becomes a shouting match of “But WHERE IS OVER HERE??? Over WHERE??”
First to remedy this I tried a CROS system that sends sound from one hearing aid to a hearing aid on my good ear. UGH, that was horrible. So, in the Spring of 2017 I had a Baha 5 device implanted. Currently I have a screw in my head attached to a magnet under the skin and I wear a device that attaches to the magnet and it sends vibration through my skull to my good ear and I can hear from my left side. Pretty cool. Except for that “where” part of it all. I still can’t tell where sound is coming from and my word recognition stinks and for something that falls off when people hug me and causes pain on the side of my head…yeah, I haven’t exactly been the poster child for the Baha 5 Attract device.
My surgeon was aware of this situation and she contacted me last Fall about getting a Cochlear Implant. I wanted to wait until I was fully vaccinated to pursue it, and in March 2021 I had my first appointment with the audiologist. Lots of appointments and hoop-jumping-through followed. More hearing tests, a CT scan, a pneumonia vaccine, a vestibular vertigo test and even a Zoom meeting with a phycologist to make sure I was a good candidate. I passed all the tests I was supposed to pass and failed the ones I was supposed to fail, and apparently I am a great candidate for surgery. It’s next week.
My surgeon will remove my Baha magnet (the screw stays in my skull as a parting gift) and install the completely different and much more sophisticated CI hardware. I’ll still wear a device on the outside as before, but instead of hearing from the left, I will hear on the left, the CI sending information directly into my cochlea that will be picked up by my hearing nerve. The nerve in my dead ear will “hear” again. It won’t restore my hearing, but I will hear sounds from that side on that side while wearing the receiver. It may take months of training and lots of visits to the audiologist for mapping, but I’m a pretty determined person when it comes to hearing, so I think I’m up for it.
That’s my story of how I got from a strange sensation of fullness in my left ear with some odd sounds some 35 years ago, to being considered profoundly deaf in that ear and now a week away from getting a Cochlear Implant. We can’t pick what goes wrong with our bodies, and in the big picture of things I got off pretty good so far. Losing hearing in one ear, along with the vertigo episodes for those many years, has been incredibly challenging. I’ve always tried to face it with humor and brightness on the outside, but there have been so many dark times, I can “Why me?” with the best of them. But now it’s time to say “Why not me?” for a chance at hearing again, albeit in a very roundabout way. If this is successful, and if we ever get out of this pandemic, be prepared for me at parties and large gatherings – I’ll be the one with the Bionic Ear ready to talk your ear off.
