Kris’s Story

Kris Siwek and her son

I had great hearing the first 29 years of my life. I had never given a second thought to the idea of hearing loss at my age. That was something that just happened in time to most people… much later in life. This is is why it took me a bit longer to realize I had started losing hearing in my left ear. It happened out of the blue that I began switching my cell phone from my left ear to my right. The first few times I did this, I thought nothing of it. I must just have better cell service on my right side. Until it dawned on me. I wasn’t hearing the same out of both ears. I thought surely my ear must be plugged o maybe it had something to do with my pregnancy. I waited it out for a week or so as the holidays were in full swing. My hearing didn’t improve and now that I was aware of it, it was impossible to ignore.

I mentioned my hearing loss to my obgyn at my next appointment. He told me just to take some claritin and it would improve. I wanted to believe him, but I knew something was wrong. My pregnancy was already considered high risk as I had went into preterm labor at 18 weeks with our first child and suffered the traumatic loss of our baby girl. I just wasn’t willing to hear any more bad news, so I tried the claritin for a few days without any improvement.

It was now January, and I finally decided to go see my local ENT for an audiogram and a check up. It was confirmed that I had a 5% senorineural hearing loss in my left ear and that since I still had 95% hearing that I would just have to manage. The doctor told me that there was nothing he could do and that we should do an MRI once I delivered my son to rule out the small chance I had an acoustic neuroma. At the time, I had no idea what the difference was between types of hearing loss. I just didn’t understand at the time that the type of hearing loss I had couldn’t be helped with a conventional hearing aid. Something had damaged my auditory nerve. I shudder looking back at my ignorance.

Fast forward 6 weeks. I was convinced and panicked that my hearing loss was getting worse. It was then one of my surgeon customers noticed that my left eye (same side as my hearing loss) wasn’t blinking normally and was bulging. I demanded a non-contrast MRI that same day. My world stopped that Friday evening when I got my results directly after my scan. I was alone in my ENT’s office and now 29 weeks pregnant. I saw the tumor on the scan before the words ‘you have a brain tumor’ even left his lips. It was big enough to see by the untrained eye. On March 5th, 2010 I was diagnosed with a 4+cm acoustic neuroma. In the following days, I learned that I would become completely and permanently deaf in my left ear as a result of surgically removing my tumor. Mind blowing is the only way to describe it. I was in such shock and denial of what this would mean for my future. I remember trying to tell myself that losing hearing in one ear would be okay. But I had no idea. I had no idea that it meant I would never be able to tell where sounds were coming from again. It meant that I would never be able to go out to a restaurant and carry on conversations like normal and that my balance would be off. It meant that I would always be focusing on sounds and lip reading and watching facial expressions to see if someone was trying to talk to me. It meant that my world would be quieter and more confusing.

As fate would have it, the symptoms from my tumor increased rapidly. My balance had become so impaired that I could barely walk on my own. My eyes stopped moving in tandem and I would have to hold my lip tight to a bottle to make sure the water wouldn’t drip down my face. Needless to say, I couldn’t wait any longer for my operation and I needed to deliver my son early. Our baby was born healthy at 34 weeks 6 days and I was given a week and a half to recover from his birth via c-section before my craniotomy. I knew that my hearing had taken a nosedive over the weeks following my diagnosis, but had no idea that it had all but disappeared. The audiogram taken the day before my AN surgery confirmed that I went from 95% hearing to 0% in 8 weeks. I made it through my 12 hour surgery and I am thankful every day for God’s work through my surgeons hands as I had the best possible outcome given the tumor type, size and nerve involvement.

Approximately 4 months after my AN surgery, I chose to have a bone anchored hearing aid implanted. For me it was an easy decision. I knew that it would never restore my normal hearing, but it would improve my quality of life. To me, every additional word that I can pick up is a gift. I will never forget when I was first activated to wear my device. I couldn’t believe all of the sounds that I had missed….things like raindrops on pavement, my dogs’ paws patting the ground during our walks, the little noises that my son made while sleeping on my shoulder. Having a bone anchored hearing aid gives me back some confidence in social settings and makes it easier to carry on conversations and it helps reduce the amount of times I need to strain my neck to hear from my good ear. I am thankful that there is an option out there for individuals that can’t be treated with conventional hearing aids. Hearing ‘you will be permanently deaf’ is so final. Having a bone anchored hearing aid gives me hope and it gives me an option to not settle for SSD.

The experience of it all has made me a more grateful and patient person. I have learned that there is so much more that I can do than I cannot. I do my best so that SSD doesn’t define me. I will always wish to have my hearing back, my I don’t regret my new outlook on life and empathy that I have for others facing invisible disabilities.

Kris Siwek