What a difference a day makes! I have heard this little saying many times in my young 49 years of age and I can certainly hum the tune as Dinah Washington croons these words in my head, but I didn’t realize the impact these few little words and meaning would have on me, until this year. More to come on this later in my story . . .
I awoke one night in September 2016 with a loud ringing in my ear and that’s where it all started. I won’t bore you with all the details of my various doctors’ appointments, hearing tests and ultimately the confirming MRI, but fast forward to February 2017, a Valentine’s Day that I will never forget, where I was diagnosed with a left-sided acoustic neuroma. I couldn’t believe the words I heard from the ENT that I have a “rare brain tumour”. I have two young daughters and they were my first initial worry and how this news and outcome would affect my family. I was devastated. I tried to carry on every day as normal as possible but at the end of the working day and when my family went to sleep, that’s when I would really think about it and I admit, I cried myself to sleep many nights.
My husband, Demetrios, and I spent a lot of time researching what an acoustic neuroma is and by the time I initially saw a neurosurgeon in my home town of Hamilton, Ontario, I was prepared with a list of questions. Unfortunately, my appointment did not go as well as I had hoped, and I was left with more questions. I did however find out that my tumour was on the larger side, being almost 3 cm, and that my brainstem was being compressed.
I continued reading and researching everything I could about my AN. I reached out to close family and friends and those in the know in professional circles. I had decided that I also wanted to explore other options such as advanced radiation techniques. After a couple of meetings, including a much appreciated one by a close connection, my quest eventually led me to Dr. G. Zadeh’s name at Toronto Western. I politely insisted for a referral from my family doctor who gracefully indulged my request to see Dr. Zadeh. I had also found the Acoustic Neuroma Association website and sent a quick email. I immediately received a call from Carole Humphries and felt, for the first time, that I was not the only person in the world dealing with this kind of tumour.
I met with Dr. Zadeh and knew immediately she was the doctor I was looking for. Dr. Zadeh exuded competence and confidence in a humble way and she understood our concerns and addressed them in a graceful, straight-forward, sincere manner. Dr. Zadeh‘s wealth of experience and knowledge and her calmness was exactly what I needed. I knew surgery, as scary as it seemed, was probably going to be the road I needed to take but, in the meantime, I still had a couple of appointments booked to explore radiation options. Ultimately, after weighing all the options and because of the size and location of the tumour, radiation was not the right choice for me. After meeting with Dr. Zadeh again, it was agreed that surgery was the best option for me. I waited for the date and surgery was scheduled for February 2018.
Almost a year to the day that I was diagnosed, the surgery day was upon me. For almost a year, I had tried to stay as positive as I could but there were days that the worry, stress and anxiety got the better of me. Although he hid it from me, I knew it took a toll on my husband, but he remained supportive and reassuring. I did, however, surprise myself that I was relatively calm the morning of surgery. I know that had to do with the fact that I was very confident in my neurosurgeon, Dr. Zadeh, and her very skilled surgical team, plus I had done everything I could do to prepare myself and be ready for this day. With my husband by my side, I was prepped to go and then rolled into the operating room.
The surgery was very successful. It was a long, almost 10-hour, surgery. When they woke me up in the operating room, I was told to smile and wink and told all looked good. I was taken to the ICU to be monitored. I had many tubes and wires hooked up and then of course the nausea set in. Needless to say, it was an incredibly rough night.
Well, back to the beginning of my story and what did I mean by that little phrase? The next morning, after only a couple hours of sleep, I felt different. Sure, there was the expected recovery, the risk of brain fluid leakage, which did occur, and other risks which did not. What I really mean by that is it was a new day, surgery was now done and all that worry, stress and anxiety I had leading up to the surgery, was now behind me. So yes, what a difference a day makes.
I lost my hearing on my left side completely and the tinnitus is still as annoying as ever. There is also some residual tumour which we will keep an eye on with periodic MRIs and follow ups. These of course are things that I expected and was prepared for, so I feel so very grateful.
I am still adjusting to a world of single-sided deafness and the fatigue that still hits me after I have taken on too much is still a gentle reminder of what I have been through.
My husband has been my biggest advocate and supporter during this journey. I can’t thank him enough and am blessed to have him by my side. We are also very proud of our young daughters as they handled this with such grace and positivity. We are all adjusting to the new us. As many have said before me, the love and support from family and great friends is truly a blessing. I have also made some new friends at the AN support group throughout this journey and they too have similar stories to share. They have given me great advice and insight with their journeys which
was appreciated, as it has helped me understand my journey and recovery. I am honoured to also be there to lend an ear (well at least my one good functioning ear) to newly diagnosed patients and hope sharing my story with them can help in some small way.
If there is one thought I can share with anyone going through this, it is this: Stay positive and surround yourself with support -- you will get through this and you are much stronger than you think you are!