Emma's CSF Leak Story

My name is Emma and I lived with an active CSF leak for over two years. My story started when I was diagnosed with scoliosis at the age of 6. I wore a back brace my whole life until I was told at 17, that my curvatures had gotten too bad to control with a brace. I went in for a spinal fusion surgery on December 5th, 2023, a week before my 18th birthday. During surgery, they placed 2 rods and 22 screws in my spine. When I woke up from surgery, I was very sick. That night, my oxygen was randomly dropping and I was in a lot of pain. But, it wasn’t until the next day that we knew something was really wrong. I started projectile vomiting, slurring my speech, and worst of all, I had a horrible headache that wouldn’t improve with anything.

I kept describing it to my parents as feeling like my head was going to explode. My mom did her own research and brought up a possible CSF leak to doctors. They denied it the first day, but as I got sicker, they decided to put me on IV caffeine, just in case it was a leak. Eventually, the caffeine worked and I was sent home on caffeine pills. 

After I was done with those caffeine pills, all the symptoms came back. I was denied care over and over again, for a month, until I fainted in the shower and was taken to the hospital by ambulance. After this, I was finally listened to and was admitted to the neuro floor and was given an emergency blood patch.

Months went on after this where I was treated at several different hospitals in my state and was either told nothing was wrong or there was nothing they could do. From December of 2023 to January of 2025, I was laying flat all the time. I couldn’t properly recover from my spinal fusion or do any of the things I loved. 

In January of 2025, I finally travelled across the country to receive treatment. This was one of the only hospitals that agreed to take my case. It took us a long time to find someone willing to take on a case considered so risky. 

I had 2 CT myelograms, and then a week later, had an exploratory laminectomy of my spine. My whole spine was cut into again. They found out that I actually had 3 leaks, and one of them was a couple of inches. They had to remove all my hardware, a nerve root, a joint in my neck, and some bone in order to get to the leak. They got to the leak and were fairly confident they had sealed it. They then had to replace my hardware and add two new screws and an extended rod. The surgery was around 8 hours. 

I was in the hospital for 12 days and even needed a blood transfusion. After this, I recovered in a hotel until I was well enough to go home. 

Unfortunately, I caught a cold from staying in the hospital and fell ill with a horrible cough. We didn’t know it for a few weeks, but this cough was reopening my leak after it had freshly been sealed. 

In 2025, after this major surgery, I had travelled back and forth between where I live and where I was getting treatment 3 separate times. I had multiple blood patches that unfortunately failed. 

We were hoping the leak was at least partially still sealed and that a patch would be enough. Unfortunately, it was not. So, on February 10th, 2026, they cut open my back a final time, got to the leak, and resealed it. 

From December of 2023 to March of 2026, I spent almost all of my time laying flat, apart from eating and using the bathroom. I had improperly recovered from 3 back surgeries because of my lack of mobility from the pressure in my head. 

Since March, I have been in PTSD therapy and physical therapy, and have been working very hard to recover. 

I am now about 8 months post-op, and still struggling every day. My body became severely deconditioned after laying flat for so long and having so much work done on my body. 

I now have occipital neuralgia and have been spending the past four months getting occipital botox and nerve blocks which have not helped. 

Throughout the past 2 years and 10 months, I have learned to remain positive through everything life throws at me. I am hoping things continue to improve for me. 

This debilitating condition has taken nearly three years of my life away. I hope to raise awareness for CSF leaks through my TikTok page. I have had dozens of people reach out to me asking for advice or just looking for someone to relate to. 

I hope with this post, I can continue to help others going through the same thing I went through. More awareness means more funding, education, and research. 

I hope that eventually; no one will have to go through this for as long as I and many others have.