Deanna Stentiford

We tend to ignore things that may frighten us about the “what if” outcome.
I first noticed something was off at a world speedskating event. For some time, I had noticed some balance and hearing issues, but I ignored them and put them off to aging, even though I was in my early 50s.
This was my first episode of dizziness and a heightened pressure in my head. Upon returning home, I went to my physician and stated, “I believe I have a brain tumor,” which she quickly dismissed. After I explained the symptoms and the family history, she sat down to hear me out.

You see, my mother suffered from brain tumors, five to be exact. Her first surgery resulted in a four-week coma that caused additional complications. After months of rehab and therapy, she returned home to begin the long road to recovery. She unfortunately experienced additional tumors every 12 months and cycled between radiation and surgeries until she could no longer combat her ongoing debilitating condition. She was a fighter through every step of the way and was a great inspiration for me.

Fast forward nine years, and I was the one receiving the phone call, “you have an acoustic neuroma…. a brain tumor” which must be eradicated. I can tell you that I had such fear and anxiety, but it was no comparison to the concern I had for my children for what they were about to experience. There is no more helpless feeling than seeing your mother suffer and fight to regain normalcy in her health.

Prior to my surgery, I did not have much time to think about the details or consequences following surgery. I took the approach to only focus on what was right in front of me, one decision at a time. I do remember having to address the possibility of losing hearing, facial paralysis, and vestibular/balance challenges that could be an outcome. You see, my tumor grew around the facial nerve and the acoustic/vestibular nerve and did extensive damage to the acoustic portion. Radiation was not an option because of the possibility of regrowth tracking to the brain stem, so surgery was the only option.

After all the preparations, both medical and legal plans, I was ready to start a new trajectory in life, one that was filled with uncertainty. My daughter sat by my bedside as we discussed all the last “what ifs,” which she refused to listen to, and my son was on the phone due to the peak of Covid. The surgery was eight hours long with a team from neurology and ENT who were the finest in their field. They slowly teased away the tumor from the nerves in hopes of leaving me with minor permanent damage. Their skills and dedication still amaze me today, and I am so thankful for how much they cared for me.

If I had one word to describe my journey, it would be Tenacity. No one understands the challenges that one faces following neurosurgery, or the months of recovery it would take. I certainly did not anticipate them correctly. The implications of stimulation to your brain when you experience simple things like the trees blowing or multiple sounds. The feeling that the whole world was on a tilt and the insecurity of every step was now part of my world. So, the tenacity to do one thing each day to tackle this thing called my new normal was key to regaining my life. Each day, I would take a few more steps, write a few more words, and build a puzzle a few moments more as small increments to my healing.

My life may be different now. I have lost hearing in one ear and still experience occasional residual discomfort, but I have also gained such a respect for life, for the incredible ability of your body has to heal itself, knowing that so many people love me and continuously pray for my wellbeing and for the blessing that my firm faith has carried me through the rocky waters to safety. I continue to work on my balance and try not to get frustrated when I occasionally weave in my walking or cannot recall a word. There are many more things in life to worry about than these little inconsistencies. When asked “how are you doing, ” I often tell people that it is just like a knee replacement, they may have some minor knee issues,”….. your brain is no different.

I had people tell me that at 9 months, your condition is what it would always be, and I have found that not to be the truth. I’m glad I didn’t listen to them and kept pushing each day to continuously improve. When I was told it would regrow, I did not focus on that, as I have been blessed to have no regrowth after four and a half years, and if it does, then I am ready for the battle again. I was told there could be cognitive issues, but I find that staying mentally active is my responsibility, which is no different than the typical aging process. I always find people’s reactions are very interesting after finding out I had a brain tumor, as they seem to be shocked by my abilities, but that reminds me that what people think or say is not always reality. What action I choose to take becomes my reality.

So, my advice to anyone dealing with this unfortunate situation, or their loved ones, is to live YOUR story. Take things one evolution at a time and tackle what is right in front of you that day, knowing that tomorrow you will tackle the next thing. Give yourself credit for all the hard work and the milestones you achieve. Know that your brain is an amazing thing that can health in extraordinary ways. Don’t let a TBI navigate YOUR life, but YOU navigate YOUR outcomes and remember to be thankful for the blessings we are given each day.