Elvan

A Sudden Turn: My CSF Leak Journey 

The Beginning

Early December 2024, I was admitted to hospital with what I initially thought was a minor health issue a burst blood vessel in my eye, a stiff neck, and an overwhelming sense of unwellness. A CT scan was done, which came back clear, but because my symptoms had persisted for over a week, the doctors suspected a possible brain haemorrhage. The only way to truly rule it out, they explained was through a lumbar puncture, a procedure that involves drawing fluid from the spine to assess brain activity. 

After careful consideration and understanding the serious risks of leaving without knowing what was going on, I agreed to the lumbar puncture. I was told recovery would be simple with 48 hours of rest and I’d be back to normal. 

But my reality was far from that. 

“I was told I’d be back to normal in 48 hours — but my reality was far from that.” 

The Aftermath

 I returned home and tried to rest. But by 4 am the next morning, I was woken by an intense, crushing pain in my chest and upper back pain so severe that I passed out on the way back to the hospital. I woke to nurses and doctors surrounding me, trying to ease what I could barely describe. Even high doses of morphine didn’t touch the pain. The only slight relief came when I lay completely flat and still but the second I moved the excruciating pain began to slowly creep up from my upper back to my neck and then to my eyes.  

“The only relief came when I lay completely flat — the moment I moved, the pain returned.” 

Diagnosis

The morning after my lumbar puncture after going back into hospital due to feeling severely unwell to the point where I collapsed and couldn’t lift my head due to the pain. A doctor diagnosed me with a cerebrospinal fluid (CSF) leak caused by complications from the lumbar puncture. He advised bed rest, hoping the leak would seal itself naturally. But soon after returning home, my condition deteriorated very quickly where my loved ones could not continue watching me scream from pain.  

“I collapsed and couldn’t even lift my head.” 

Immediate Unimaginable Pain

I lost the ability to sit up, drink water, walk, or even open my eyes. The pain became so unbearable that I couldn’t scream loud enough to match what I felt. I didn’t know the human body could endure that level of suffering. I questioned everything about the human body, pain and strength. I couldn’t understand how it was possible to ever overcome something like this.  

Within minutes, an ambulance arrived. Despite every painkiller, gas, and morphine they gave, the agony didn’t subside. My screams and tears for 3 days echoed through hospital corridors.

“I didn’t know the human body could endure that level of suffering.” 

When things got really bad

Further scans confirmed the terrifying reality, a surgeon and anaesthesiologist explained that my brain had begun to sag, pressing against the nerves in my neck due to the loss of spinal fluid that normally supports and cushions the brain. They explained that the fluid that supported my brain was leaking out of my spine due to the hole that the lumbar puncture had caused. 

Surgery 

I underwent a spinal blood patch a procedure where blood is withdrawn from your own body and then injected into the spine to close the leak. There are no words to explain what the surgery was like for me. The surgeon explained that in order for the blood patch to go well, I had to be awake and sit up.  

After 6 days of being unable to even lift my head to have a sip of water I had to sit up and stay still while they operated on the spine. I had two assistant doctors that held my hand and all I have memory of is my nail marks engraved on the female doctors hand.  

Thankfully, and somewhat miraculously, it worked. I was one of the lucky ones. The second they injected my own blood back into my spine, my eyes that I couldn’t open for days opened and I could somehow breath again. It was a miracle.  

Post surgery

I spent the next 6 weeks bedridden, with drastically reduced cognitive function. I struggled with short-term memory loss, nausea, brain fog, and extreme fatigue on top of lingering pain in my spine. Due to the loss of fluid in my brain I wasn’table to think and feel how I normally would. Everything was a blur. Almost 6weeks later I took my first steps again without the support of my loved ones. I Ssowly started walking, sitting by myself, putting on my shoes alone and all the basic things that we take for granted. It was the beginning of returning to life not as I once knew it, but a new version of it which I am slowly making peace with.  

A year and 3 months post surgery and I now suffer extremely low blood pressure as a result of the CSF leak and have been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome).  

Some days are harder than others and some are easier. Healing isn’t simple nor easy, and I’m learning to accept that. There are days when I feel completely drained, unable to engage with the world, and other days when I feel like I could conquer it. I’m relearning how to care for myself, to slow down, and above all, tolisten to my body.  

I am so grateful that I was lucky enough to be treated so quickly and that the blood patch worked the first time.  

A message to those experiencing or that have experienced CSF leaks

I was 28 when I experienced the darkest and most painful days of my life and am now going into my 30’s knowing that life is so fragile. This has taught me to be so grateful for every day and to be able to the small things. I’m praying for those that are still seeking medical help, please advocate for yourself and don’t forget to ask for help. I pray that your pain finds ease as soon as possible. Sending love to everyone that is soldiering and has soldiered through this journey.