My journey as a Chiari Malformation Warrior

I have a small white heart tattoo on my right wrist to remind me to love myself and to be kind to myself. I’m booked in for my next tattoo on Thanksgiving day (we don’t celebrate this holiday in Australia). My new tattoo is to commemorate the 4 year anniversary of my Chiari Malformation decompression surgery.

In October 2016 I had major brain surgery to help reduce the symptoms and pain I had suffered for 20 years. I had daily debilitating headaches since I was a teenager. After 20 years of searching for the reason for my headaches I finally was diagnosed with Chiari Malformation in July 2012. The sad news about Chiari Malformation is that vets know more about this terrible condition than the average GP or specialist. Many genetically engineered dog breeds like King Charles Caviller spaniels have Chiari Malformation due to the years of breeding to achieve the head shape that is considered desirable in these dogs.

Fast forward to 2016 and I had to make the difficult decision to have Decompression surgery to help give me some quality of life back. We are lucky to have one of the world’s leading neurosurgeons who specialises in Chiari Malformation based here in Sydney. Australia. Professor Stoodley did my decompression surgery on 18 October 2016. Best decision I have made as I no longer experience daily headaches. I required 2 further surgeries in November 2016 and in January 2017 as is often the case with Chiarians who have decompression surgery I needed a BP shunt after the decompression surgery to help my body regulate the production and circulation of Spinal fluid.

My new tattoo is going to enhance the awesome “zipper” scar I have down the middle of the back of my neck. All Chiari Warriors who have had decompression surgery have this same scar. We often get a zipper tattoo to celebrate our journey.

My new tattoo will be a vintage zipper pull that starts at the end of my zipper scar. Through the end of the zipper pull will be a purple Chiari Malformation awareness month ribbon. Creating awareness of Chiari Malformation is something I am very passionate about. It took 20 years of pain, depression, being told I was attention seeking or worse still a pain medication addict to get my diagnosis and if I can help just one person get a diagnosis quicker than what it took me, I will feel like my voice and message has been heard.

One in 1,000 people in the world have Chiari Malformation according to statistics. We “Zipperheads” are Warriors and we want the medical community to be better educated about this awful condition so that individuals can get diagnosed quickly and get the medical interventions they need to begin to heal and manage the many symptoms.

Thanks for letting me share my journey with you.