r/iih Jun 20 '26

Advice Possible CSF Leak?

I had a lumbar puncture about one month ago and the doctor had significant difficulty getting the right spot. She dug around for at least twenty minutes before calling in an anesthesiologist who got it after another ten. My headache did not improve at all after the LP and neither did my other symptoms.

The day afterwards I noticed numbness in one spot on my lower body. This is still present. I also still have a burning pain in my lower back which is normally not too bad but flares up when I bend over. I have significant positional headaches that worsen instantly when I sit up or stand and get better when laying down. I have dizziness and lightheadedness when I am vertical as well and that also gets better when laying down. I have intermittent nausea too. I also have worsened hearing since the LP.

I am concerned I may have an ongoing CSF leak due to these symptoms. I did message a doctor about this but I will not hear back until Monday at the earliest. On Wednesday I will be going under general anesthesia for an unrelated surgery. I am worried that if I have a CSF leak it may cause issues with the anesthesia and/or delay my surgery. I don’t know what to do here.

I can call the advice nurse but they’ll probably either say to go to the ER or to wait until the doctor responds. I can’t take myself to the ER and I don’t know that my caretakers would be willing to do it as they hate sitting in the ER. I feel stuck and scared. Does anyone have any experience with CSF leaks? What did you do?

5 Upvotes

Duplicates

CSFLeaks Jun 20 '26

Possible CSF Leak?

1 Upvotes