Lillie’s spinal CSF leak story
Lillie’s spinal CSF leak story has some familiar elements—a sudden onset of head pain, confusion on the part of medical professionals—but presented an additional challenge, since her spinal CSF leak happened during the height of COVID lockdown in the UK. Here is Lillie’s story.
About Lillie
Tell us a little about yourself!
My name is Lillie, and I am recovering from a year-long spinal CSF leak. Life before was incredibly active and fast-paced, and I enjoyed going to the gym, playing sports, and socializing. Despite the traumatic setback of my leak, I have hope that I will return to this former self!
How old were you when your spinal CSF leak symptoms started?
I was 20 years old when I woke up with a dull headache that soon developed into a migraine and nausea. I was forced back to bed by pain that dramatically worsened to the point where lifting my head off the pillow was physically impossible. As this was during peak lockdown for COVID in the UK, seeing or even just speaking to a doctor was difficult. Finally, I was seen by a physician. It was suspected that I could have meningitis or a brain bleed, so I was injected with penicillin and taken to the hospital via ambulance.
Did you have any other medical conditions at the time?
None.
Finding a diagnosis
How long did it take to get a correct diagnosis?
Upon being admitted to the hospital, there was a period of about 8 days of waiting for a diagnosis. It was clear no one fully understood why I was in so much pain, or why I was physically unable to move. This, coupled with no permitted visitors due to COVID, left me very vulnerable and scared. I had blood tests and a cranial CT scan done, but unfortunately those didn’t provide any information.
Later, I would have an MRI scan that did show signs of a spinal CSF leak, but at this point it was actually a lumbar puncture, administered to rule out meningitis, that led to a diagnosis of spinal CSF leak for me. The procedure revealed that I had alarmingly low CSF pressure, as the doctors struggled to extract any fluid at all. At the time I was led to believe that a spinal CSF leak was essentially very minor and would heal on its own. I was discharged with acetaminophen and told to maximize my fluid and caffeine intake.
Did that help your symptoms?
Unfortunately, no, it was not that simple! The following weeks were very difficult. Luckily, I had family around me to look after me, as I was essentially bed-bound. I ate Christmas dinner on a mattress on the kitchen floor.
In these weeks I lost a drastic amount of weight and strength, but by February I began to improve and managed to return to school and slowly start exercising again. Despite these positive steps, I could tell something still wasn’t right. Often small moments of fun—laughing or drinking with friends—would leave me in agony and being forced to lie down no matter where I was. I could tell I was still leaking.
After a few months of this limbo period, I couldn’t take the recurring, unpredictable, and debilitating pain anymore. I tried to get back in contact with the previous neuro team I had seen, but with limited success. I was told to drink more water.
Did you seek more treatment for your spinal CSF leak?
Yes. I began to search for a neurologist with a special interest in spinal CSF leaks. This proved far trickier that I could have imagined, but finally I found a team in London who were amazing. They listened to me and were empathetic and efficient. The team was a cohesive unit consisting of a neurologist, a neuroradiologist, and a neurosurgeon. One brain and spine MRI showed two large Tarlov cysts and significant evidence in my brain of low CSF volume. It was apparent that I was only getting worse and that action was needed. The team recommended a CT-guided epidural blood patch. I had already researched epidural blood patches, so to finally hear it suggested by my new team of doctors was more relieving than scary. The procedure was performed exactly a year after my leak began.
Treatment and recovery
What was your recovery like after treatment?
In my excitement, I think I went into the procedure with slightly rose-tinted glasses. I had been prepared by the team for what to expect from the patch and short hospital stay, but I did not know much about the recovery process. The initial weeks post-procedure felt somewhat similar to the leak experience, in that I was flat for as long as possible, due to back pain. Once I began spending more time on my feet, I could say for certain that I felt no low pressure head pain, which was brilliant news. The back pain did persist for much longer than anticipated (around 6 weeks), and at around the two-and-a-half-week point, I encountered a setback in the form of rebound high pressure.
This had been mentioned as a potential side effect following a patch, however I’d thought I was in the clear after a few weeks had gone by with no sign of it. It took me a few days to work out what was happening, but a pattern began to emerge of waking up with a headache, then the pain disappearing after being upright for a period of time, and then the pain coming back every time I laid down.
This was effectively the complete opposite to what I had experienced while leaking, when being flat alleviated my pain. I felt very unwell both physically and mentally. No one could say how long this would last. It just felt relentless, literally being thrown from one end of the pressure scale to the other! I had more scans done to assess the effect of the high pressure. Luckily, these were not alarming. I was told to wait on it with the hope that it should right itself, which it did after a few weeks.
Have your symptoms returned?
Despite experiencing no real low-pressure leak symptoms since the patch, I have been grappling with dizziness, light headedness, and feeling very spacey. Due to that, I had another scan done recently that indicated a small but persisting leak, amongst other things. I am now talking with my doctors about scheduling another myelogram, and likely surgery.
Living a spinal CSF leak story
What do you wish doctors knew about spinal CSF leak?
I wish doctors understood how debilitating a spinal CSF leak can be. And also how to manage it effectively, and how and when to treat it.
What’s your new “normal”?
Currently I am living a cautious life. My “normal” has ricocheted from being flat a lot of the time with low pressure, to then being unable to get flat at all thanks to post-patch high pressure, to now, where I am walking a tightrope hoping to avoid them both!
Do you have any words of advice for people affected by spinal CSF leak?
It can be difficult to not feel depressed at the unfairness of having a spinal CSF leak. I would suggest as much as you can to try and appreciate the moments of relief. Remember, as lonely as it might feel, you are not alone, and it’s important to not give up hope. I’d also like to stress the importance of finding the right people to treat you.
What are your plans for the future?
I’m a bit nervous for the next step in my treatment, but I’m trying to be hopeful about the outcome. My plans—should my recovery continue successfully—are to return to University to finish my degree in Nutrition with Food Marketing, and hopefully fully regain my ability to live life to the full with my friends and family.
Further reading:
See our Patient Stories page, where you can watch videos and read narratives of people’s experiences with spinal CSF leak.