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CSF leak help?

Started by kathyy on 08/21/2019 4:10pm

Does anyone on this board have experience with a csf leak? About 4 years ago my spinal cord stimulator leads fell apart in my back. Since then, headaches, a drippy nose, equilibrium and cognitive issues have haunted me. I had a test abt 3 years ago that was negative. I never sneeze but when I get up in the morning my nose starts running as soon as I lean over my sink to wash my face. Nothing helps. I have tested negative for ALL allergies. I have headaches in the afternoon and constant fatigue. I need only bend over or lift something mildly heavy to start the Faucet all over. I can replicate the runny nose at will. The secretions are crystal clear with what looks like droplets of water mixed in with mucus.

Has anyone experienced similar symptoms? Kathy

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2 Responses


Hi kathy --

I had a csf leak as a result of a misplaced pedicle screw during a 16-level spinal fusion. The overwhelming symptom was a headache whenever I was upright. I suggest finding a physician who specializes in csf leaks to get a solid diagnosis and treatment plan. I can recommend Wouter Schievink at Cedars Sinai in LA and Linda Gray at Duke. I found their e-mail somewhere in this forum (I think). They were both immensely helpful and were instrumental is helping me get the problem solved. Good luck!


I had a CSF hemorrhage as a result of an infection from a microdiscectomy. It was the worst feeling ever in the world. As soon as I stood up I had to run to the bathroom and start vomiting because the headaches were so bad. I was leaking liters per day through the incision wound in my back and had to cover up with a towel to avoid soaking anything I touched.

After multiple additional surgeries it was fixed and they put a drain in and I had to watch my CSF leak into this drain hoping it would slow down daily. Fun times. And then when it didnt slow down they're just like well we're gonna take the drain out and hope it does on its own.

I feel like the headaches from CSF leak are unmistakable. But, then again, I never have had headaches besides on days when I've been very hungover before or afterwards so I can't really compare.

I have to live for the rest of my life with the knowledge that the infection could still be inside of my disc/vertebrae/dura wall and waiting to come out and kill me.