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Cranial Cerebrospinal Fluid (CSF) Leak Post Craniotomy

"cranial cerebrospinal fluid leak", "csf leak", "post craniotomy" "craniotomy complications" "fluid bubble on head"
Cerebrospinal Fluid Bubble

I’m sure there are a slew of nasty complications that can arise after a craniotomy but I’m not a doctor and I can only speak from my own experience. My experience was with a Cranial Cerebrospinal Fluid (CSF) Leak.

A craniotomy sucks. Not surprising, right? Well, I didn’t know just how much it sucked until I had to recover from one. If you are a woman, the silver lining is that you are probably a tough cookie like me, and can get through it with few to no bumps in the road.. If you’re a guy – ha. good luck.

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CSF leak on my pillowcase 😖

Two days after I got released from the hospital, and four days post op, I woke up soaked, and my bed was stained with a clearish pinkish liquid.

Oh. My. Lord.

We tried to find the source of the fluid but to no avail. I did notice a bubble of fluid accumulating on my forehead though. So freakin' grosssss. After I had soaked through 2 large towels, my surgeon told me to come in. He drained the gross bubble by pushing and pushing on my forehead until he squeezed it all out – Soooo disgusting, but so satisfying to see it disappear. Then he put in a few stronger stitches where my incision had opened. He told me to go home, rest and keep an eye on it. No doctor should ever tell me to "keep an eye on it" because I'm annoyingly intense and and I didn't take my eyes off of it. I'm sure I drove my poor surgeon nuts..

"cranial cerebrospinal fluid leak", "csf leak", "post craniotomy" "craniotomy complications" "fluid bubble on head"

No matter how much I stared at it, I couldn't will that damn bubble away. The next day the leaking continued and the bubble came back. I could literally feel fluid moving around in my head and my vision started to go blurry. The bubble refilled faster than my head could drain it and I was a wreck. I started going on and on about how I was going to leak fluid out of my head FOREVERRRRR… I called all the doctors in the family and asked them if I was going to leak fluid out of my head FOREVERRRR... Looking back, I was very dramatic about it - I’m so sorry Dr. Komotar! When we arrived back at the hospital, the doctor explained that it was a Cerebrospinal Fluid (CSF) Leak. So, "naturally" they decided to do a spinal tap to suck the fluid out of my head.

Wait, let me say that again, so you can be appropriately stunned. They decided to do a spinal tap, in my spine, TO SUCK THE FLUID OUT OF MY HEAD!

I mean, if that’s not the coolest thing ever, I don’t know what is..

The doctor gave me a mirror and told me to watch my forehead..

Then he explained…

Our bodies are pretty amazing and the various parts of our bodies communicate with one another.

So in your case, your brain is saying, I have too much CSF!!!

And your spine is saying, well, I have just the right amount..

RESULT = not much is happening.

BUT, when I remove some CSF from your spine,

your spine will say, Hey! I don’t have enough CSF!!

and your brain will say, I have way too much, here take some!

RESULT = Your brain will send the excess CSF from your head to your spine, and all will level out.

I held the mirror and stared at my head as I felt the needle go into my spine, OWWW! I won't lie, a spinal tap isn't all sunshine and rainbows. It freakin' hurts! But I forgot all about the pain when the doctor yelled, LOOK NOW!

And I watched as the bubble in my head flattened.

I mean… Are you blown away by this!?!? I was then, and I still am as I sit here writing about it.

It was gone and it never came back. They wrapped my head really tightly with gauze and admitted me to the hospital. Over the next few days they monitored the fluid and pumped me full of a steroid called dexomethazone. I stayed in the hospital for a few days and when I returned home, I was instructed to keep my head wrapped with moderate pressure, stay on the dexomethazone (10 mg, 4 times per day), and keep my head elevated. Two weeks later, the doctor removed the remaining stitches and I was finally back on track to a normal recovery. All that was left to do was begin weaning off the steroids and wait for my pathology report to come back so we could figure out what to do next.

I have to say, I wish I knew the doctor at University of Miami who did the spinal tap so I could mention him here and thank him. I had already been through so much, and with the added trauma of the CSF leak, I was completely freaked out by the time he walked into my treatment room.

Imagine: Finding out you have a baseball size tumor in your brain, learning you need brain surgery, having the surgery, taking an insane amount of meds you're not used to, your head starts leaking, it won't stop, everything is soaked, and some guy is going to stick a needle in your spine to try to fix it. And all this within a 2 week period!!!

If that doctor who did the spinal tap was any other type of human, other than the calm, cool and patient one that treated me that day, I might have lost it. I was literally holding on by an emotional thread. But, he was perfect. He came in, confident and excited to show me how he was going to make me better, and he distracted me by engaging me in the process. So not only did I recover just fine, I have this cool, crazy story about how he fixed me.


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