Patient Story

After battling debilitating spinal and cranial CSF leaks for over three years, I was completely bedbound for all of 2025. My neurological deficits were so severe I couldn't even sit up without my brain shutting down, and I had to rely on a lay-flat wheelchair. The generosity of friends and strangers allowed my family and I to travel to the Freiburg CSF leak team. While there are passionate doctors advocating for and treating CSF leak patients here in Australia, they are simply stretched too thin. In my case, neurointerventional radiologist, Dr. Geoffrey Parker, had already looked at high-resolution imaging of my spine in Australia and suspected a lumbar CSF-to-venous fistula. Since my partner, Marie, is German, seeking out this specialized team in Freiburg was the right choice. Finding a CSF leak is notoriously difficult, but the Freiburg team is world-class.

Dr. Lützen’s expertise during my interventional dynamic CT Myelogram immediately gave me confidence. Once the team had met and all agreed the imaging confirmed two lumbar CSF-venous fistulas, Dr. Florian Volz and Prof. Dr. Jürgen Beck visited me to explain the findings and advise on surgery. For the first time, I felt completely safe and believed from the start—I didn't have to fight to be heard.

On the morning of Friday, 16 January, 2026, just five days after my admission, Prof. Beck and his team successfully operated on both fistulas using the minimally invasive surgical approach he pioneered. Post-surgery, Dr. Amir El Rahal provided invaluable guidance on my recovery and their latest research on type 3 leaks. Understanding that new fistulas may develop from pressure changes in about a quarter of patients—and knowing the team is in my corner and just a message away if that happens—gives me immeasurable peace of mind.

Now, five months post-op, the team has reviewed my follow-up MRI and encouraged me to continue my physio. While I experience some incredibly difficult symptom fluctuations as my body recalibrates after a year in bed, I trust this team. I am walking again, the wheelchair is gone, and I am achieving goals I once only dreamed of—like taking my son, Ziggy, to school and cooking for my family. I have been up on my feet for half a day most days now, things are not easy and there is much to do for rehab but I’m getting stronger and have the chance of living again. This team didn't just treat me; they saved my life, and I cannot overstate my gratitude. I am very aware just how lucky I am and how many barriers to care there are with this disease.

While nothing is guaranteed during any hospital admission, having a knowledgeable, highly focused team that sees a high volume of CSF leak patients and actively publishes research must, in my opinion, significantly increase your chances of successful treatment for this debilitating disease.

I am forever grateful to Professor Beck and all his team.

Day of admission to Freiburg Neurosurgical ward, 12 January 2026.

Taking my son to the first day of his new school, 13 April 2026.

My journey: https://www.youtube.com/watch?v=fRbVxvXycXw