Hi, my name is Anna and I developed a spontaneous cerebrospinal fluid leak in 2023 while doing Pilates. During a back bend I felt a strange pain in my spine and the next day I experienced a 10/10 headache, muffled hearing, extreme light and sound sensitivity, nausea, vomiting and cognitive difficulties. During Pilates, I had torn my dura, which is the connective tissue that surrounds your brain and spinal cord. The dura also holds in your cerebrospinal fluid, which keeps your brain cushioned and floating in your skull. My brain had begun to sag, causing extreme pain and neurological symptoms.
At the time, I was living in Dunedin, New Zealand, with my partner James. I was diagnosed after three weeks by doctors at Dunedin Hospital. After 10 months of limited improvement from treatments in New Zealand, James and I moved back to Australia. At this point my case had been taken on by a top CSF leak specialist in Sydney. I underwent multiple invasive scans, called myelograms, and injections of blood around my spine in Sydney. Unfortunately, the leak has not been sealed, as the doctors have been unable to pinpoint the exact location of the tear. I have had my case assessed by specialists in Sydney, Melbourne and Perth with limited treatment options available. I have been offered exploratory surgery to find and seal the leak here in Sydney, however the surgery is highly risky and invasive.
In August 2025, I decided to seek an opinion from a world-leading CSF leak clinic in Freiburg, Germany. They immediately identified new findings on my scans and recommended I travel to Freiburg to undergo treatment with their team. I was blown away by their competence and expertise. Their team successfully finds and repairs hundreds of leaks each year and receives patients from all over the world.
I am hoping to raise $20,000 towards my medical treatment at the CSF Leak Clinic at Freiburg University Hospital in Germany. The cost of all investigations and surgery with their team is approximately $58,000 AUD. The team is proposing a 7 day hospital admission in January 2026, with comprehensive myelogram testing, to pinpoint the exact location of the tear, followed by thoracic spinal surgery. I truly believe this is my best chance at making a full recovery.
Having a CSF leak has been the biggest challenge of my life. Everyday for two years, I have experienced what feels like a cross between a severe migraine and a concussion. I have been unable to work, exercise, drive, and at times care for myself. I have experienced the darkest moments of my life and also the most intense gratitude to be alive and cared for. I have been supported so exceptionally well by my partner, my family, and my wonderful friends.
Over the past two years I have had major improvements and major setbacks. The symptoms of my CSF leak are highly positional, so many symptoms are relieved when I lie flat in bed. For months, I was bedridden 21 - 23 hours a day, sometimes barely able to lift my head up off the pillow. In 2024, I had improved to the point where I could be upright nearly all day with manageable symptoms. However, the leak reopened after a round of invasive scanning. In order for me to return to the life I love, the tear in my dura must be robustly sealed. Without treatment I am at high risk of developing superficial siderosis, a serious neurodegenerative disorder. It is caused by iron deposits on the brain, causing hearing loss and loss of balance/coordination.
What Your Donation Will Be Used For
Every donation will directly fund my care at Freiburg University Hospital. This includes:
• Advanced MRI, ocular ultrasound, and myelography to confirm and pinpoint the exact site of the CSF leak.
• Targeted and long lasting repair of the dural tear, through a blood patch, fibrin sealant, or laminectomy surgery.
• Travel to and from Germany (I will have to fly business class so I can lie down on the plane and survive the trip without a serious medical incident)
Any support towards my treatment in Freiburg is hugely appreciated.
To learn more about cerebrospinal fluid leaks you can visit this website: