2020 and 2021 have been full of surprises and challenges for all of us. Thankfully, our family has adapted to social distancing, wearing masks and mainly only seeing family over FaceTime. One plot twist that I did not envision was that I would be diagnosed with a brain deformity that has likely been present since birth.
I have suffered from headaches and what I believed were migraines for my entire life, even as a child as a child. I have tried multiple remedies and preventative treatments through the years. Then, in September of last year – the hearing in my left ear went out. Thinking that I probably had the start of an ear infection, I went to the doctor. When I finished a course of prednisone with no change, I was referred to the ENT. The same week that I saw the ENT my vision changed immensely. It felt like my eyes were bouncing – but the medical term for this is nystagmus. The ENT sent me for a brain MRI and it was discovered that I have Chiari (key-r-eee) Malformation Type 1.5. This means that the tonsils of my cerebellum and part of my brain stem descend into my spinal canal. This has likely been this way since I was born, but I am now becoming increasingly more symptomatic with age.
Thankfully, my vision has now returned to normal and I am not experiencing vertigo right now. My father is a retired allergist from the UW Hospital in Madison and he immediately contacted a friend who is a retired neurologist. That wonderful man called the best pediatric neurosurgeon he knew, on my behalf, Dr. Iskandar at American Family Children’s Hospital in Madison, WI, and Dr. Iskandar set up an appointment time for me within days of my diagnosis. After seeing him twice, we have determined that I am a surgical candidate for decompression brain surgery, and plans for surgery are to take place in May 2021, provided that COVID-19 is more under control in Wisconsin.
With all of this taking place on the brink of Thanksgiving, I took the opportunity to count my blessings. I’m very thankful that Jason has been incredibly supportive while we both process this news and the daunting idea of brain surgery with an 8-week recovery. I am grateful that I will have surgery in my hometown so that my parents and sisters can visit. I’m exceedingly thankful that my family had connections to a specialist in the field of neurosurgery, who is an expert in Chiari.
My surgery date has now been set for May 4th, 2021. I appreciate all of the love and prayers that we have received during this crazy time and for your continued prayers that are always welcome and greatly appreciated.