My whirlwind story

I just got home from neuro ICU post leak repair. Here's my story.

Early February I got a cold from my kids. Developed a sinus infection. Blew my nose very very deeply over a sink and after the mucus was all out, an orange water poured out. I'd blow the left nostril, orange would pour out the right. I'd blow the right, it would pour out the left. It was weird. Told my husband I was leaking brain juice through my nose. We made jokes about it.

It happened again 2 days later. Then the next day after that. On that last day (Tuesday, February 10), my husband actually witnessed it. He told me this was actually serious and said to go see ENT immediately.

We work in a medical building and I just walked down to the ENT office and told the receptionist I have a possible csf leak and if I could please be seen at any time that day. Said I work in the building and she can just call me if there's a no show or a free minute to see me. She looked shocked. Started to say they don't have anything, but then said brb and went in the back. Came back and said follow me. I got seen right away.

I worried this would be one of those get to the doctor's office and can't reproduce the symptoms situation as it so often happens. Not the case. I blew my nose while bent over and the orange poured again. I caught it in my hand and they rushed to get me a cup. Doc scoped my nose and saw orange tinge as well as a bunch of mucus, took some cultures, but didn't find an obvious hole/leak. He gave me the cup to take home and fill up some more and instructed to take it to the hospital lab once I got enough. He sent out the cultures, gave me a CT and MRI orders. Said he agrees that this might be a csf leak and we'd have to do surgery with a potential lumbar drain dye to help locate the site.

I made an appointment with ophthalmology to check for potential IIH. Scheduled a CT for March 10 and MRI for April 9. Started antibiotics. Still in shock that I got taken seriously. Started to think about possible pertinent history.

I'd been having post nasal drip for years, causing breathing issues to the point I needed an inhaler sometimes. I assumed I had seasonal allergies. For every season. This went on for many many years. This past fall I finally decided enough is enough and requested allergy shots from my immunologist. Got given a blood work script form for every environmental allergen they could test. The test came back...negative...for everything! I don't have a single damn allergy. So why am I constantly dripping?

I also remembered that I had a weird incident a year or two ago, where I blew my nose out so much that this gelatinous orange glob came out. It was like orange jello on my tissue. Google search at the time came back as a possible result of a sinus infection and a sign of leukocytes at work. Now this appears to have been related to this new development.

I messaged my ENT to add all this to his note in case it becomes important. He did.

Friday, February 13, he calls me to report the fluid tested positive for Beta 2 transferrin. I do indeed have a leak. Additionally, my nose culture came back as step pneumoniae, the leading bacterial cause of meningitis. He changed my imaging orders to stat, I got scanned on Monday, February 16, and had my surgery on Friday, February 20.

I still have whiplash from how fast this all rolled out. From first contact to surgery - 10 days. I had my first post op appointment for a scope today, exactly 2 weeks from the day I walked down to that office.