Welcome to My Personal Page
I'm part of the movement to end brain tumours and I hope you'll join me in this Canada-wide effort to put a stop to this disease.
Every day 27 Canadians learn they have a brain tumour. In January 2012 I became one of them. For the past 5 years I have been fighting the challenges of an Acoustic Neuroma. The tumour was finally diagnosed after living with it for almost 7 years. Due to the size, location and damage the tumour had caused I had very few options and had to have a Craniotomy to remove the majority of the tumour to save my life. The tumour had basically grown thru my inner ear and my hearing has been permanently removed on the left side. The tumour could be described as melted gum in your hair. Can you imagine how difficult and impossible it would be to remove that gum without damaging or cutting the hair. The tumour had also grown into my 8th facial nerve which had started to present some symptoms of nerve damage.
The Craniotomy was completed and removed 90% of the tumour - a small amount was left in order to preserve my facial nerve and essentially my "face" There was a 10% chance the tumour would grow back.
In 2014 I was told that my tumour had come back - Because it was a bit smaller and not as invasive I was approved for a Gama Knife Radio Surgery. It was a very interesting proceedure, silent, quick, painless. It was to destroy the growing tumour and it would die over the course of a year. There was a 10% chance that the tumour would not die.
In 2016 I was told the tumour was back, very aggressive and another Craniotomy was scheduled for later that same year. This time we agreed that the tumour was to be removed in its entirety and I accepted the permament damage that was going to occur.
By the grace of God and one amazing Brain Surgeon the damage was better than anyone expected. I could not blink or smile and was left with what is best described as a Bell's Palsey. I had feeling in the face but no movement and over time it appeared to worsen as the muscles weakened from lack of movement. I had headaches all day - every day commencing 1 month after the surgery.
After a crazy 5 months of Brain surgery, a total home renovation and a move to Kitchener I was finally ready to take the time needed to address the face and headaches.
I was told that if the face did not start moving on its own I would have to have reanimation surgery to my face - it was very important that this surgery was done within a year of the operation to avoid permanent atrophy of my facial muscles. The headaches - "Oh well" a pain killer can deal with that.
I know it seems very vain to worry about my face after such a journey, but I have to tell you how quickly I realized that the ablility to smile is a gift that should never be wasted.
Since January I have been working very hard with accupuncture, oestopathy, and a dietician. I also used botox to control the migraines and to temporarily limit the movement of my good side to improve the symmetry of my face.
As I write this in the first week of April, I am so please to say that I have huge improvement in my face. The muscles have toned up and I am able to move my face on the left side. It is not perfect and I still have a way to go to get my eye working. I am confident that it will be a lot better even a month from now. My daughter recently asked me why I was smiling. My answer was quick and easy and I said "Because I can"
The status of my tumour today...I honestly don't know, I feel like something has changed and I believe it is gone. As many would agree this really is a waiting game - I will find out in the next month or so if I can leave the 10% club I seem to belong to.
I was introduced to Brain Tumour Foundation late into my diagnoses - as in 4 years later. Once I discovered them I was so grateful and amazed how quickly I felt understood. I felt like I didn't have to explain anything in this environment - I was just who I was. The Brain Tumour Foundation is very important to Canadian Families for support, research, resources, friendship, strength, and hope. My goal is to make sure that families and individuals dealing with brain tumours are made aware of the Foundation as soon as possible because, believe me when I say, it matters and no one should walk alone.
Thank you for your support,