My journey began in May 2017 with a call from my doctor’s office saying my MRI results were in. As I was enjoying an amazing family vacation in a Florida theme park, I waited until my return to see the doctor and enjoyed the rest of my vacation.
The MRI revealed a large Acoustic Neuroma (AN). I had been to see an ENT specialist years earlier for a hearing assessment. As it turns out, the explanation that my hearing loss was a result of occupational hazards proved to be wrong. I cursed my stupidity for not having insisted on further diagnostic testing. In the meantime, an AN had grown without any nasty symptoms. Now, with the MRI results, I began moving into a new phase.
Following the AN diagnosis, I learned to manage the pain from pressure in my head, and also my new unsteadiness while I waited for surgery. Daily Advil and elevators were my friends. Finally, on December 18, 2017, a tumour the size of a golf ball was removed during a 12-hour surgery at Toronto Western Hospital.
My mantra – you must always look forward and make the best of what you’ve got. Be patient, let your body heal and pursue opportunities to make it better...
The Good News
The surgery went well: the pain was gone and most of the tumor was gone. My brain stem that had been as tight as a drum was back to its old fluffy self with no apparent adverse effects. After a few days, I was up walking with a walker, and I was home before Christmas.
I had some temporary nerve damage that froze the left side of my face and caused me to speak in a whisper. Once again, I adapted: straws and soft foods were my new friends, and I wore a patch to protect my eye in extreme cold. My patient wife became expert at adding gel to my eye, helping the new me with daily tasks, and buying time for my body to heal . . . and it did! Gradually, I gave up the straws and my voice got stronger. With physiotherapy and exercise my balance improved. After three months I was ready to battle the crowds in downtown Toronto to commute to work again.
But ... my face was still not normal. I could not smile or completely close my left eye. Regular application of gel or drops protected my eye from damage but kept it blurry. Care was needed to keep my mouth clean.
By August 2018, it became apparent that my face would not fully recover. The area around my left cheek was still frozen, with my eyebrow sliding towards my eye.
Opportunity and Help Comes My Way
Opportunity appeared in the form of Dr. Baltzer, a skilled plastic surgeon who years earlier was a resident at SickKids working with Dr. Zuker. Dr. Zuker is a pioneer of “smile surgery”, who had honed his skills over decades of helping kids around the world. Dr. Baltzer, now with the University Health Network and Toronto Western Hospital, works with Dr. Zuker to offer this expertise to adults with facial palsy.
When I first met Dr. Baltzer and Dr. Zuker in September 2018, I was caught a little off-guard, having anticipated more traditional plastic surgery options. Instead, I was presented with a facial reanimation surgery option, whereby a nerve graft is used to restore natural facial movement! It was a unique and unexpected opportunity, but I had to decide quickly as the unused muscles in my face would soon start to atrophy.
Honestly, I was a little gun shy. I had just started feeling strong again and more like my old self after the last surgery. Did I really want more surgery? Dr. Baltzer was patient with me. She gave me time to consider the option while filling out the needed forms in case I decided to go ahead. I asked her if she would be doing the surgery herself. Her answer was, “Definitely!”
A quick Google search showed that facial nerve grafts were being used at top medical centres with some amazing results. Of course, there are no guarantees -- life is full of risks – but the surgery appeared to offer the potential for excellent results, with little downside risks beyond that of normal surgery. One cost: a sensory nerve would be taken from my leg, and I would be left with numbness around my heel.
On November 26, 2018, I underwent facial reanimation surgery. Although it was a five-hour delicate surgery, I recovered quickly. Dr. Baltzer and Dr. Zuker removed a sensory nerve from my left leg and weaved it from the moving side of my face to the paralyzed side, across my upper lip and across my eyebrow. They also lifted my left eyebrow to give my eye a normal shape. The surgery went well, and I was back to work after a two-week recovery period. My face and leg were still tender, so I avoided any pressure on my face and any heavy lifting.
The Journey is a Marathon Not a Sprint
It is now three months later. The surgical team had done an excellent job. The most immediate improvement was the brow lift, with the left brow now aligning perfectly with the right. More important still, my eye resumed a more normal shape, which helped it to close. The facial incisions along my ears, eye brow and the inside my mouth healed quickly, while the brow lift incision was deeper and took a little longer to heal. Facial scars are now either non-existent or invisible to the casual observer.
My leg works great. I can move normally, walk and run. A small area on the left side of my left foot around my heel is numb, feeling something like when your arm goes to “sleep” from a lack of circulation. I notice it sometimes, but I’m used to it.
Is there new facial movement? Nerves can take a frustratingly long time to heal and the grafted nerve needs to grow in. My wife and I have noticed slight improvements to the definition of my face and there is some new movement. We won’t know the full story for another six months or so. Next is facial physiotherapy and exercise in front of a mirror to help wake up sleeping muscles and teach them to work in concert with the right side of my face again.
More good news, my recent MRI showed my brain is stable with no change to the small remnant of tumor by my left ear. My wife teases me that she wants it in writing that I’m mentally stable!!
My journey is a marathon not a sprint. I’m feeling good and I’m optimistic for the future. As I plan another family vacation to Florida, I ask myself if I would agree to facial reanimation surgery again? Was it worth it? Definitely!