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My experience with spinal fluid leaks after spinal taps

My experience with spinal fluid leaks after spinal taps

When you undergo a spinal tap, the doctor must puncture your dura, which keeps your spinal fluid safely circulating through your spinal cord and brain. The puncture in the dura usually creates a small tear. Typically, this tear in the dura heals quickly on its own, but sometimes it results in what’s called a cerebrospinal fluid (CSF) leak.

I’ve had 3 spinal taps in my life (so far), and 2 out of 3 of them resulted in a spinal fluid leak. My first leak was when I was 16 years old, and the main symptom I experienced was a bad headache when sitting up/standing that was relieved when I laid down. We were not told about the possibility of a leak after the procedure, and so we had no idea that it was best to lay flat for as long as possible after a lumbar puncture.

I did some research online and figured out that what I was experiencing was likely a spinal fluid leak. We drove back to the ER, and all they did was give me 500mg of caffeine. They told me to lay flat as much as possible until the headache cleared up. After a few days, it started getting better, and I never had to get a blood patch.


My most recent spinal fluid leak

About a month ago, I went to the ER because I was having repeated myoclonic seizures that were making it so I couldn’t sleep at night, along with severe headaches due to my IIH. They scheduled a spinal tap to relieve the pressure on my brain. It gave me relief that evening, and I thought all had gone well.

When I got out of bed the following morning, I had a bad headache, and I immediately knew that I had a leak. The doctor that did my spinal tap told me they would do a blood patch if I still was having problems 48 hours after the procedure. Until then I was to lay flat, drink lots of fluids, and have salt and caffeine. I thought it would heal on its own like the last time.

As the day went on, each time I got up to go to the bathroom, my headache was worse. I felt horrible, and my headache was bad even when I was laying down (with CSF leaks, headaches are usually relieved when lying down, because it allows more fluid to surround the brain).

I got no sleep that night because of the pain. By the next afternoon, I started getting very nauseous from the pain every time I had to stand up, and eventually started throwing up every time I was upright.

We drove to the ER with me laying down in the back seat. They got me in immediately--my vitals were through the roof, and I was begging them to lay me down (this was out of character for me, haha). The doctor told me I didn’t have enough spinal fluid to surround my brain even when I was laying down. Yikes!

This leak was much worse than my first one. So much that I learned a new scale of pain during that week! It was the first time in my life I’ve actually cried due to pain.


Getting an epidural blood patch

They called in an anesthesiologist to perform a blood patch to seal the leak. It was not a pleasant experience by any means, but I didn’t care because I knew it could give me some relief.

The doctor put a large needle into my back, took some blood out of my arm, and then injected the blood into the “epidural space” in my back. It gave me a burning sensation down one of my legs, but that only lasted a minute.

I got some relief within 5-10 minutes of the blood patch, and after about an hour of laying flat they sent me home.

Here's a photo of me right after my 1st blood patch:

Unfortunately, the patch didn’t hold, and a few days later I was back at the hospital for another blood patch. This one was done in the interventional radiology department, where they’re more experienced in doing blood patches. I knew it had worked because when they sat me up to be taken to the car, I didn’t have the excruciating pain in my head.

My high pressure returned within hours (this isn’t something you should have to worry about if you don’t have IIH), but the leak was sealed.

Having a lumbar puncture and 2 blood patches in one week made my lower back very sore and stiff, and it made it difficult to walk and sit for a few weeks. Ice packs helped ease the pain.

Who is at risk for spinal fluid leaks?

Anyone can get a spinal fluid leak from a lumbar puncture, but these people are at a higher risk:

  • Those with Intracranial Hypertension (IH) (it can also be more difficult for IH patients to recover from leaks) -- we are more sensitive to CSF pressure changes and don't have normal CSF production/flow
  • Those with connective tissue disorders, such as EDS (Ehler’s-Danlos Syndrome), because their bodies have more difficulty healing
  • Those with POTS (Postural Orthostatic Tachycardia Syndrome)
  • Those that were poked multiple times (sometimes doctors don’t perform the lumbar puncture correctly the first time, and they have to poke you more than once, this leads to an increased risk for a leak)

Here's some more information on POTS and CSF leaks: https://spinalcsfleak.org/pots-or-spinal-csf-leak/

What can I do to prevent a spinal fluid leak after a spinal tap?

  • Lay flat for as long as possible after the procedure, preferably 24-48 hours (only get up to go to the bathroom) Drink lots of fluids
  • Consume plenty of salt (this promotes fluid retention)
  • Have lots of caffeine (this is supposed to stimulate CSF production, it didn’t help for me, but I’ve talked to many people that have improved with it!)

What do I do if I think I have a spinal fluid leak?

Do you a terrible headache that gets worse when you sit up or stand up? Did you just have a spinal tap? If the answer to those questions is "yes", then you probably have a leak.

But I'm definitely not a doctor, so I'd recommend doing these things:

  • Call your doctor
  • If it’s excruciating, go to the Emergency Room
  • Continue to lay flat, drink lots of fluids, and consume salt/caffeine (as it likely will heal on its own)
  • If you feel you need a blood patch, consult your doctor or go to the ER

As always, I'd love to hear your thoughts and feedback below!

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