2 years post surgery day! There is just so much to celebrate and be thankful for! I think back even a year ago, and think about how much better I am today than I was then. Time has such healing power, and it just takes a whole lot of patience to dance that journey.
I have a few updates from the last time I spent some time with my beloved Mayo in December. Going into the appointments always feels heavy, because I just don't know what may be on the other side, but I was blessed with clear scans and happy tears. My neurosurgeon let me know that he was doing another giant trigeminal schwanomma the day after my appointment, where they will be trying a new technique based on the things they learned from my case. He was also impressed that I speak as well as I do as he identified the area of the brain they had to navigate; all reassuring. Updates and steadiness include:
• My vision has improved so much! I ditched the patch last July. I still have some double vision at certain angles, but so much improvement!
• I will likely stay completely numb on the left side of my face, which means I will not get any nerve functions back either. This is called trigeminal neuralgia.
• With trigeminal neuralgia, this brings the chronic burning and pressure. Meds help manage this and the electrical shocks.
• The shocks have become very minimal if I take the meds on time and avoid triggers (alcohol, caffeine, dehydration). I will be revisiting Mayo for nerve function changes.
• Since I don't make tears in my left eye, I will continue to wear the sclera lens to protect and provide moisture to my cornea.
• My left jaw muscle and temporal muscles have completely atrophied, creating alignment issues. I am wearing a dental appliance at night to support this.
• I feel strong, well balanced and happy! I know I will have mostly great days, and still some "bad head days".
Overcoming big scary events in our lives can be so rewarding, and at the same time emotional. As I reflect back on the day I went in, I had so much hope in my surgeons and team. I had hope that I would come out as "me". I had hope that I could go back to life as I knew it. At the same time I was scared that I wouldn't make it, scared I wouldn't see everyone I love again, scared I would look different, scared I would need to be cared for the rest of my life (all of which I knew were risks). However all the positives and learnings from this journey have taught me so much about the importance of hope, myself and understanding others who are traveling a path of challenge. I know that anniversaries following a traumatic experience can carry happiness and relief, yet at the same time trigger sadness and fear all over again. Just know that whatever your challenge may be, I have hope for you, always.
