My story began in early 2002, I was working full time running an office, I had a busy life with a husband and two small girls who were seven and four.
My symptoms were first noticed when I could no longer hear on the phone with my right ear. My swallowing also became increasingly difficult. I had bouts of gagging because my gag reflex ‘was going’. I went to my doctor numerous times and was tested for everything. He eventually sent me to an ENT specialist who told me that there was nothing wrong with me and I was imaging things.
Eventually my breathing was affected during my sleep and my husband forced me to go to an outpatient clinic. The next day I had a CT scan. They found a tumour about the size of a grapefruit on my auditory nerve. It was crushing my brain stem which is why my breathing was affected. I also had some weakness on my right side and some dizziness. Later that day, January 17, 2003, I was sent to the QEII Hospital in Halifax Nova Scotia. I had an MRI and they decided that surgery was the best option for me. So I underwent a 17-hour surgery on January 23rd, I don’t remember much after that.
I had some trouble breathing after the surgery and was placed on a feeding tube. I had to eventually have a tracheotomy to handle my breathing. I also developed pneumonia after surgery and ended up spending three months in ICU in Halifax and then another month at the hospital closer to home.
I had to learn to walk all over again and had extensive physio therapy in Halifax. There was damage to my voice box which was repaired by surgery in 2004 and my breathing eventually improved.
While I have not been able to return to work, my life is pretty normal now. We had our beautiful daughter in 2005 and today she is six. The tumour which was not fully removed during surgery began to grow again during my pregnancy. I had two months of radiation to stunt its growth in 2006 and that has worked so far. I have yearly MRIs to continue with my care.
Life is good now. I still have some swallowing issues, my balance is not the greatest and my hearing didn’t return in my right ear – but those are small prices to pay to still be here with my family.