Help Phil with treatment for his CSF leak
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My name is Marie Claude, and I’ve created this fundraiser for my partner, Phil, who is battling multiple chronic illnesses.
Abnormal high and low pressures in brain + spine were undiagnosed for so long that they have now caused cerebral spinal fluid leaks (CSF) in his spine and skull.
- Phil’s health has drastically declined over the past three years and has left him bed-bound for most of the day, unable to maintain an upright position for extended periods
- His brain doesn’t have enough fluid surrounding and protecting it (symptoms are only somewhat relieved by lying flat, which essentially re-floats the brain)
- Pain, cognitive difficulties, and neurological problems are impacting him every day
- Not being physically active, has led to the loss of muscle, mental health problems, and other comorbidities, severely affecting his quality of life.
As his primary caregiver, I work full-time to support our family, which includes our 5-year-old son, Ziggy, who is starting school next year. Unfortunately, we don’t have any family nearby in Australia to lend a helping hand. I am balancing work, caring for Ziggy, and supporting Phil through this challenging journey.
He is unable to work and for the past two years, we relied on Phil’s income protection insurance, but the policy has now ended. We received a one-time permanent disability payout from his insurance, and with this money, we paid off some of our mortgage to keep us afloat. Phil receives a disability support pension of just $160 monthly. Relying solely on my income has been challenging, and as we face increasing medical bills, the pressure is becoming unbearable.
WHAT THE MONEY IS NEEDED FOR:
Your donations will help us cover essential medical bills, including surgeries, specialist appointments, and travel costs. We live in Melbourne, but Phil's specialists are in Sydney, requiring frequent flights and hotel stays.
Every contribution will relieve some of the financial strain we've been facing as we deplete our savings to keep up with ongoing medical costs. With no clear path for Phil to return to work, our situation feels increasingly dire, and I often find myself feeling lost and scared.
Unfortunately, we cannot get reimbursements for travel expenses, as it is assumed that Phil could see a neurosurgeon in Melbourne. However, his rare condition means that we cannot find the necessary expertise here. All his neurosurgery team are based in Sydney.
THE CURRENT MEDICAL SITUATION:
Phil also has recently been diagnosed with SSCDS - Superior Semicircular Canal Dehiscence Syndrome, bilaterally, and multiple encephaloceles. This comorbidity involves an abnormal opening in the inner ear caused by long-standing high-pressure eroding the bone away from areas in the base of his skull. There are also areas where the brain or its surrounding soft layers are herniating through the skull into structures below. His Cerebral Spinal Fluid is seeping out through these openings and comes out of his nose via the eustachian tube.
SSCD causes vertigo, hearing loss, and sensitivity to noise amongst other symptoms. Phil will be having a craniotomy in Sydney on the 25th of November to attempt to repair his inner ear and skull base. We will join him and stay there for 2 weeks. This is operation number 9 for Phil.
THE PREVIOUS MEDICAL SITUATION:
Phil has had health issues most of his adult life and a correct diagnosis evaded him until 2021 when he was diagnosed initially with Eagle’s Syndrome. While visiting family in Europe, he struggled to perform basic tasks and had to take strong pain medication just to participate in family activities. Upon returning to Australia, we quickly sought surgeries to remove the compressive bones in his jugular veins, providing Phil with some temporary relief. Little did we know this was just the start of further diagnosis and decline.
Phil worked in IT and aspired to start his own business, The Pop-Up Kombi Company. Unfortunately, the pandemic hindered his plans, and his health continued to decline. After further scans revealed additional compression of his jugular veins, Phil underwent four more surgeries, including C1 resections.
Despite some initial success, Phil discovered he had both spinal and cranial CSF leaks. Diagnosing this condition has been complicated, it is only recently after being missed by many experts that Phil correctly located the site of his skull base CSF leak. This will be addressed we hope during the craniotomy in November.
Phil has educated himself on his condition, studying his scans to identify missed pathologies, this has proved vital.
In February 2024, he underwent spine surgery to address his spinal CSF leak, which left us with over AUD 15.000 in out-of-pocket expenses, even with medical insurance covering some of the expenses. Sadly, his symptoms have returned as is often the case. As things stand now, we can see at least three surgeries in Sydney throughout 2025/26.
THE FUTURE:
We are hoping for Phil to regain more function and quality of life. He has come to terms with how unlikely it is he will fully recover but we believe there are improvements to be made yet.
Phil has excellent analytical and critical thinking skills, which have been very helpful. He is currently working with the University of Monash on 3D-printed models of his skull to aid his surgeons intraoperatively and help locate skull-based leaks.
He is hoping to publish the findings to encourage surgeons to utilize novel and emerging technologies available right now. As far as we know his surgery in November will be the first to use this technique in Australia.
THE WAKE-UP CALL:
It was during a moment when updating my family that I realized Phil could have faced serious consequences - or even death - when two Balloon catheters burst inside the veins in his brain during one procedure. Luckily the veins did not rupture, if they had it would have been catastrophic. That realization hit me hard. Unfortunately, the procedure didn’t yield the outcome Phil had hoped for and left him in a worse condition with nerve damage. My Mum, Phil’s Brother, and Niece kindly flew out to assist us this year, for which we are so grateful. Ultimately though we’re navigating this on our own.
We’ve come to understand how difficult it is for people to grasp what we’re experiencing, as our lives are far from normal. This situation isn’t likely to change anytime soon and may even worsen, requiring more care. As a result, we don’t foresee a return to having two incomes, which weighs heavily on my mind as I worry about our future.
I fell in love with the most wonderful person, and together we have been blessed with a son. We love exploring, meeting new people, and celebrating life, food, and culture during our travels. We are fortunate to live in a beautiful country close to the beach. Sadly, most days, I don’t get to see the man I fell in love with. He suffers daily, enduring pain and discomfort, yet he has pushed through when he could have given up countless times. Phil is the strongest person I know, and his resilience inspires me. I admire him deeply and love him for that. We would be lost without him.
If you are in a position to contribute, whether financially or in another way, it would mean the world to us. Your kindness and support can make a significant difference in our lives. Thank you for being part of our journey.
We will update you as soon as we can.
With heartfelt gratitude,
Marie, Ziggy, and Phil
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DEUTSCHE VERSION unserer Geschichte // GERMAN VERSION of our story
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Organizer
Marie Stehr
Organizer
Cheltenham, VIC