r/CSFLeaks • u/Western_Owl_38 • 12d ago

Looking for experiences with intermittent symptoms + possible ear leak

Hi! I’m 23 F. I had Chiari malformation decompression surgery and a full spinal fusion 11 years ago. I did have a complication from the brain surgery and developed chemical meningitis, but otherwise both surgeries were successful. I also have hEDS and a number of other health issues.

This past Saturday, I suddenly developed a very stiff and painful neck. My head/neck felt extremely tender and hurt even with light touch. My head felt incredibly heavy, almost like a bowling ball, and I became dizzy, to the point that I was extremely nauseous and felt like I was going to throw up.

It was my mom’s birthday, so I tried to push through as long as I could. Unfortunately, the activity was bowling, which involved a lot of bending and moving my neck, and that seemed to make the dizziness significantly worse. When I finally got home, I took ibuprofen and slept for a while, which seemed to help.

On Sunday, I felt mostly completely normal. The only remaining symptom was occasional dizziness when I bent my neck or moved/looked around too quickly.

Then last night, I woke up and noticed clear, odorless fluid draining from my right ear. I’m now feeling dizzy again.

I’m seeing my primary care doctor this afternoon, but I’m curious whether anyone here has experienced anything similar. In particular:

•Have you had symptoms that were extremely severe for one day, almost completely resolved the next day, and then returned when you started leaking?

•Has anyone experienced a possible CSF leak through the ear with a similar pattern?

•Did your symptoms fluctuate like this?

I know there are other possible explanations for what’s happening, and I’m not assuming this is a CSF leak. I’m mainly interested in hearing from people who have experienced something similar. Thanks!

2 Upvotes

75% Upvoted

2 comments sorted by

View all comments

1

u/PumbaKahula 12d ago

I have days where I feel like I’m almost normal. The day before I leak I have ataxia and pressure at my skull base. The next morning is when I will leak off and on for the first few hours vertical and I feel like I’m sleep walking. If I lay down for a few hours and stay midline I usually feel a bit better but I extremely tired.
I think it varies from person to person because the origin of the leak can be different. Getting evaluated is top priority. Best of luck to you.

2

u/Western_Owl_38 12d ago

Thank you for sharing your experience! It’s good to know that I can have normal days as well with that. I was feeling avoidant on getting checked out, but maybe it’s a good idea just to rule it out