I was asked to share my journey with an acoustic neuroma and I agreed because if this could only help one person, it was totally worth it. First, let me share with you a little bit about me. I am a single mom of two beautiful daughters I adopted from China who are now both university students. They are my pride and joy and cannot imagine my life without them. I worked as a registered nurse for 39 years in different departments such as ICU, and dialysis followed by 5 years, in a diabetic clinic of a hospital in my hometown in Eastern Ontario. I was still working when I started my AN journey in July 2017.
I was enjoying a beautiful summer with my girls and friends and by mid-July I started feeling a numbness on the right side of my tongue. I had been to the dentist a few weeks before so I thought it was probably related to the freezing for the tooth repair. I was feeling good except for headaches, but this wasn’t unusual to me so I thought nothing of it. A few more weeks went by and the numbness became more pronounced. I consulted my dentist as the numbness was on the same side the freezing was done. After some x-ray and exams, the dentist told me he did not think it had anything to do with the freezing. I still believed nothing serious was going on, a s I was feeling good except for the numbness. For a few months, I had noticed some slight balance issues when I was walking to work but I had not related that to the numbness. I became concerned at the end of August, when the right side of my face also started to be numb and there was a feeling of fullness in my right ear.
I had been planning for retirement, so at the end of August, I notified human resources that I was officially retiring January 1st 2018 and taking the month of December for holidays. I was so excited about the last few months left at work after 39 years. Suddenly, one morning, getting ready for work I started having tinnitus in my right ear. At that moment, I knew it was time to call my doctor and after listening to my symptoms, he wanted to see me at the end of my shift. My wonderful family doctor that I had known for the past 30 some years looked quite concerned and asked for an urgent MRI and audiogram. Since the beginning of the tinnitus I had started to be worried and now it was getting worse by the minute.
The next day, I called for an audiogram appointment. They had a cancellation that morning and they offered me the spot. As soon as the audiogram was done, the audiologist told me I needed to see a specialist asap. I came out of that office thinking the worst. Back in my department at work, I was in tears when I called one of my best friends at the hospital. After we hung up she happened to see two doctors who I had worked with before and they arranged for me to see an ENT that same day.
I was very anxious. My MRI which was scheduled for Sunday September the 24th. I am sure that all of you know it can be quite a claustrophobic experience. As I was leaving the x-ray department, the technician looked at me and in a very soft voice she said, ‘’ Good luck madam, your doctor will get the result within a week.’’ Right then I had a feeling it wasn’t good news. The next day, I went to work and in the afternoon my doctor called and asked me to drop in at the office at the end of my shift. I was so anxious but managed to finish my work, and got my charts ready for the next day not knowing that would be my last day at work. I called my sister and asked her to come with me to my appointment as I knew I needed support. As I entered my doctor’s office, being the last appointment of the day, it was very quiet. The lights had been dimmed and as I sat in the waiting room, I told my sister, that this was not normal. The secretary and nurse I had known for many years were also avoiding eye contact with me. After a few minutes, my doctor, not the nurse, came to get me and I knew it was not going to be good news. I had shared many things with my doctor, we worked together, he helped me with the adoptions of both my girls and had always been very good to me and my family. He told me the MRI showed a brain tumour but he could not tell me what type of tumour at that time. He told me he would arrange for me to see a neurosurgeon in Ottawa, gave me a note for sick time for my work, and told me we would keep in touch.
Leaving the office, I was devastated. I tried very hard to calm down as it was time to go home to my youngest daughter. She could not see me like that as we were still not sure of the final diagnosis and I didn’t want to worry her too much. I will spare you the next few weeks where I had very bad days thinking the worst. I had a lot of support from my family and daughters but especially from my oldest daughter who was studying biology at university and said that all my symptoms looked more like an acoustic neuroma, something I had never heard about before. Doing some personal research, I had hope. By now however, I had completely lost my hearing on the right side.
Finally, my appointment on October 2 with the neurosurgeon, Dr John Sinclair at the Ottawa Hospital arrived. I was so anxious waiting to see him because in a few minutes I could receive the worst news ever and my life would never be the same BUT it turned out to be one of the best days of the last few weeks. He was one of the most reassuring doctors and proceeded to tell me all about my tumour, which was most probably an acoustic neuroma. The tumour was approximately 3 cm and compressing my brainstem. He ordered an MRI with contrast. He indicated the need to proceed to surgery urgently due to the compression if the next test confirmed his diagnosis. He discussed radiosurgery but according to him, the tumour was too large and the compression of the brainstem was too severe. He indicated surgery would be done with facial nerve monitoring to protect the facial nerve function and that they would most probably have to leave a small residual tumour to protect my facial nerve.
Depending on the size of the remaining tumour and further MRI post-surgery there could be indication for radiosurgery called CyberKnife to make sure the remainder of the tumour would not grow back. I was told that I would most probably not regain my hearing, but believe it or not I left the office in a state of euphoria thinking I will get through this. I did not have a glioblastoma (cancerous tumour), something that had been on my mind for the past few weeks. I did not mind the surgery at that time, as there was a cure and I was so relieved. I called my girls, my family and friends and from that point on I felt positive about the whole thing. Life was good to me after all.
Within the next few days, I had another MRI with contrast, a scan, and I was back in Dr Sinclair’s office a week later; on the 19th of October to get the final diagnosis of a 3 cm vestibular schwannoma with compression on the brainstem. I was told the surgery would be booked within the next few weeks but to go to the emergency room if I ever got worse headaches, nausea and vomiting. I came home, got ready for the surgery, and spent time with friends and family.
Finally, on November 9th, I underwent surgery for eight hours. Everything went smoothly, 92% of the tumour was removed with no facial nerve damage. I spent the first 24 hours in an acute care recovery room. I was a little nauseated and the pain was well managed with the medications. I was transferred to an intensive care neuro floor for the next three days and things continued to improve. Six days post operatively I was discharged home.
The road to recovery went well. By January 2018, I officially became a retired nurse and I started to walk on a training track in my hometown to regain my strength. In late January, I got another MRI and at my second post op follow up appointment, it was discussed that the CyberKnife radio treatment could be a good option for me to make sure the remaining tumour would not grow back. Six months after the surgery, on May 1, 2018, after more scans and a head mask molding done, I received a 45-minute CyberKnife treatment. I was a little apprehensive but the technician took her time explaining what was going to happen throughout the treatment. She was very reassuring. It was pain free, and time passed quickly as I was invited to select a movie to watch on the ceiling during the treatment. I experienced no side effects.
MRIs have been scheduled every 6 months since my surgery, and on my last one it showed the remaining tumour was now getting slightly smaller and I have graduated to once yearly. I cannot thank enough both my doctors for the great care I have received. I am now enjoying my retirement; life is really beautiful. The deafness on the right side is not a big problem for me at the moment so I have not yet looked into any kind of hearing aid. As time goes by, my balance is getting much better and I can say I feel like my own self again.