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Reasons to Smile
by Christine Abraham

My left ear was ringing and felt plugged up. I could hardly hear. Perhaps the music was too loud at the wedding we attended the night before. Decongestants didn’t help. I just felt “off” and  decided to go to an ENT who confirmed that I had significant hearing loss.

The ENT didn’t know why I had hearing loss.  People told me that it could be stress from my new job and being a busy mom of two young daughters.  Doctors thought it was an autoimmune disorder or sudden sensorineural hearing loss. I tried different treatments for a couple of weeks, even receiving steroid injections through my eardrums, which were to try and strengthen my hearing nerve directly, but I still knew something wasn’t right - people just don’t go deaf suddenly.

I demanded an MRI and I’ll never forget the expression on the MRI tech’s face. I was not surprised to get a call from the doctor the next morning. I was told that I had a large – but thankfully benign – brain tumor called an acoustic neuroma. When I saw the image of the tumor, I couldn’t believe it. All I could think about was getting it out of my head as soon as possible.

I went to UCLA and the staff were a marvel. They even encouraged me to get a second opinion, so I went to the House Ear Institute. I decided to go with the surgical approach suggested by the UCLA team because it felt like the better path for me and I knew I was in good hands. My doctors were incredibly kind and compassionate and discussed all the intricacies with me. I had faith that they would take care of me so I could quickly return home to my family.

At 3.3 cm, the tumor was too large to observe, and I was not a candidate for gamma knife radiation. Within a month of my diagnosis, I was booked for surgery. I was worried about my kids and husband and the timing of my surgery – scheduled during the last week of kindergarten for my oldest daughter. My little one was still in nursery school. In addition, I had just started a new job. I felt like I was letting everyone down. I prepared as much as I could, stocking the kitchen for easy meals and having extra clothes on hand for the girls.

I reported to UCLA at 4:00 am on June 7, 2011. Because the tumor was wrapped around my vestibular nerve, my retro-sigmoid procedure and the fat graft from my thigh lasted over 21 hours.

The doctors had discussed the risk of facial paralysis. Even though my facial nerve was maintained, the left side of my face had completely collapsed. After being home for one day, I began to experience a spinal fluid leak out of my nose and was readmitted for a spinal drain, which I kept for two weeks. During this time, I also had a gold weight inserted into my eyelid so I could close it.  I still had no tear production and couldn’t get good eye closure, so it was important to see an eye specialist to preserve my cornea. I also needed dental work because I did not have saliva.

Finally, my facial nerve started to come back to life. It came back with a vengeance resulting in synkinesis. I was really worried about how my girls saw me, and I remember my daughter sitting in my lap trying to push up the side of my lip with her little fingers to make me smile. It was heartbreaking because it actually hurt to smile. I felt so broken for so long.

I went back to work within two months of my procedure. It was incredibly difficult, but I wanted to reestablish a sense of normalcy. Even though the surgery preserved my remaining hearing, I use a hearing aid to help me.  It increases the volume and also helps to tune out the ringing in my ear. Slowly, I started to have reasons to smile again.

I still have some synkinesis symptoms – including uneven facial movements and painful muscle spasms. Quarterly Botox injections help relax my face and neck muscles and give me a more symmetric appearance. My wonderful neurologist has been administering my injections for over five years now, and I accept this as my not-so-new normal.

It’s been 10 years since I’ve been tumor free. My amazing girls are now 14 and 16! My main reason to smile is that I’m still here with my family. They keep my spirits lifted - my crooked smile is all they’ve ever known. They always remind me that I have many reasons to smile. I’m a survivor.