Arriving at an AN diagnosis often requires the “Squeaky Wheel” approach. After a boating accident in 2012, I immediately developed tinnitus and muffled hearing on my right side. I did go see my family doctor as well as an ENT specialist, but unfortunately there was no official diagnosis. My symptoms showed signs of a concussion as a result of the boating accident. As the years went on, I noticed my hearing getting worse, the tinnitus was unbearable some days, and I was getting headaches all the time.
Once again, I followed up with my doctor in 2016, who sent me to a second ENT specialist. My symptoms were again related back to the accident. Although the loss of hearing was noted, nothing further was investigated.
In January 2019, I went back to my family doctor and expressed, “something is really wrong with me”. I re-explained my symptoms and shared with my doctor, “I feel like I have a bad day, every day”. At the same time, I continued to do my own research, and everything pointed to an Acoustic Neuroma. When I had a third ENT specialist appointment, I went in telling him that I think I have AN. He gave me some validation and ordered a balance (VNG) test, and an MRI. The immediate data from the VNG test indicated my balance was significantly compromised. Both tests eventually confirmed my suspicion, and I was officially diagnosed in August 2019 with an acoustic neuroma. It was 2.2cm in size.
Like everyone, I was overwhelmed with emotions and not sure on next steps. I just kept thinking, how can this happen? We have so much going on at home. I have two teenage children, a very stressful job, and so many family commitments. What are we going to do? I didn’t want this to change my world. My husband and I decided to talk to the kids and the extended family; we told them what was going on and used the ANAC website to help explain the issue. Our kids were old enough to understand the severity, and we assured them that I was going to be just fine. I also talked to my work, and they were extremely understanding. I decided to slow down at work to part-time, affording me time to do some research, attend appointments, and take some time to myself.
Thankfully, I also had ANAC to help. I reached out and had a very lengthy conversation with Carole Humphries, Executive Director about my diagnosis. Timing worked out for me; that week there was a support group meeting which helped me understand my prognosis and options.
I was referred to Sunnybrook, and had appointments with two surgeons. I learned that the two best options, based on my age, tumour size, and amount of hearing loss, were either radiation or surgery. The approach for surgery was explained in detail. After my appointment, I did my own research and elected to undergo surgery using the translabryinthine approach. Accepting the fact that my hearing was not serviceable, and that I would be single sided deaf (SSD), was not an easy pill to swallow.
In the months leading up to surgery, I prepared as much as possible. I exercised daily, prepared freezer meals, arranged a support system to help with the kids and their sports commitments, while I was recovering. Thankfully I have an amazing, caring, and understanding family, all willing to help.
My surgery was on December 5, 2019 and lasted 8 hours. We couldn’t have asked for a better outcome. The full tumour was removed and the facial nerve was preserved. I am forever grateful to the team of surgeons, nurses and medical staff at Sunnybrook Health Sciences Centre.
One week post-operatively, I developed mild facial paralysis. My right side showed signs of palsy, with difficulty to blink my eye, and a sloped smile. During my post op appointment, I was advised it was temporary and would go away with warm compress and massaging. This all happened during the holidays, so I did my best to still attend family gatherings. However, it was only three weeks post-op so I was fatigued and felt a little awkward with the facial palsy. At the fourth week, I really feel like I made a turnaround. On New Year’s Eve, we celebrated and I went out for dinner with my family.
My recovery consisted of long walks every day and going to the mall before it opened and doing laps of power walking. By the sixth week, I returned to the gym: did longer walks on the treadmill; increasing intensity; introduced gentle yoga and engaged in social activities with friends and family. I started to re-gain my balance and also saw a vestibular therapist. In addition, I returned to normal parental activities by driving my kids to and from school and attending their competitive sports games.
The SSD has taken some time to get used to, and I can honestly say that at ten weeks post-op I am still not completely used to it. I have learned to use an ear plug in noisy situations such as my son’s hockey games. In social settings, I selectively pick my seat knowing that I can’t hear out of my right side. As well I have learned to be honest with colleagues and friends by telling people upfront of my SSD, or telling people to have one conversation at a time.
Finding out about your AN diagnosis and options is not an easy process, but going through this has taught me some very valuable lessons.
1) Be an advocate for your own health and get a second, sometimes third opinion.
2) Use a support system of family and friends, and be thankful for their love and support.
3) ANAC is an excellent resource for help, and their services are invaluable too.
4) We are lucky to live in Canada; we have access to excellent health care.
My greatest advice and learning from all this are to embrace the change, do your research, and find your new normal. It won’t be easy, but please remember there is support.