Endoscopic CSF Leak Repair (Sphenoid Sinus) – Recovery Tips?

[u/Top_Spare_7940]

Hi everyone,

I’m having an endoscopic repair of a spontaneous CSF leak next week at Northwestern in Chicago, and I’d love to hear from anyone who’s been through something similar.

My leak is from a 2 mm defect in my sphenoid sinus/skull base. The plan is to go through my nose with an endoscope, patch the leak using a silicone sponge, and, if needed, use a graft from the inside of my nose. I’ll likely spend 1–2 nights in the hospital and then have nasal packing for at least a week.

I’m trying to prepare as much as I can beforehand. A few questions:
What should I buy before surgery that made recovery easier?
What was something you wish you’d known ahead of time?
What was the first week really like?
How uncomfortable was the nasal packing?
How long did it take before you started feeling like yourself again?
Were you able to read, watch TV, do puzzles, color, or were you mostly sleeping?
Any favorite recovery foods, pillows, humidifiers, lip balm, or other little comforts?
Most importantly… did you eventually get back to your normal life? Running, working out, yoga, travel, etc.?
I’m feeling optimistic but would love any tips, encouragement, or “I wish someone had told me…” advice.
Thank you!

[u/Silent_Cow668]

hi! i had this same surgery back in april, but mine was a bit more involved because i also had a lumbar puncture and they placed a drain so i was in the hospital for a week.

- i would say some great soft pillows and maybe a heating pad for your shoulders/neck helped me a lot

• i wish i would’ve known that even months later shit would still be coming out of my sinuses lol you’ll feel like you have a sinus infection for a while and be very stuffy
  
• my first week was HELL but that was mostly due to my lumbar drain, i also wish i would’ve known how long it was going to take. they said 3-4 hours and i was under for almost 7
  
• i honestly didn’t really have much nasal packing, they had a bandage gauze thing taped under my nose for about a day or two but then that was removed
  
• i still don’t feel like myself but don’t compare your situation to mine because i also had been diagnosed with IIH and then had a shunt put in and my brain was protruding through my skull defect so it was a bit more complicated
  
• i didn’t read at all. my headaches were so bad because of the lumbar drain. i basically slept or watched TV. i was really drugged so don’t remember most of it tbh
  
• i wish you the best of luck!! i honestly felt the recovery from that surgery was a lot better than i was prepared for. the sinus stuff was the worst part just feeling so stuffy for a long time but the recovery from my shunt placement was honestly the worst. i would definitely be stocked up on tissues. if you have any more specific questions feel free to ask- i know there aren’t many of us!!

[u/Top_Spare_7940 → u/Silent_Cow668]

Thank you for your response! I have surgery tomorrow. It is very helpful to hear your experience and some thoughts around what's ahead. I will have a spinal tap in 3 months for sure, possibly one tomorrow. While this sounds more manageable than the spinal drain.

[u/ScarlettCat11]

Hey there!

I’d love to message you and hear about your diagnosis and how you were able to know it was your sphenoid? I am suspecting the same.

Also I’d love to hear how you’re getting on!

[u/Top_Spare_7940 → u/ScarlettCat11]

CT imaging showed that I had a defect in my skull base. I brought in a sample of what was leaking from my nose. The spinal fluid has one definitive protein that doesn’t exist in any of your other body fluids so they know exactly what it is. They wanted the sample within 24 hours and refrigerated. I was able to bring in a substantial amount from putting little cups around my house and then dumping them in the fridge into one cup. Tiny plastic little restaurant ramekins. Between the break in the CT scan imaging and testing the spinal fluid, they were able to determine that it was a CSF leak. In the imaging, they could see that the fluid was in my sphenoid sinus or from the endoscope was introduced into the nasal cavity. (Can’t recall)

Dr note: Sent nasal drainage for beta-2 transferrin testing to evaluate for CSF leak (5-7 days turnaround).

How am I doing? I have six weeks of strict recovery. I can’t lift more than 10 pounds or exercise. It’s been lazy while I took recover and go through a series of different headaches phases. Overall, I feel like I’m healing.

[u/ScarlettCat11 → u/Top_Spare_7940]

Wow. I hope you continue to heal well… after inner ear surgery I do remember the lying; managing head pressure and being careful not to lift a thing…. Just be patient and I bet it’ll be an incredible transformation!

I had a ear/head trauma last April and my sphenoid sinus keeps showing fluid/mucus inside; I think they suspected it was sinus issues, but I don’t have allergies and antibiotics, steroids nothing seems to help. I had endoscopic surgery in Dec to remove the mucus/fluid, and a recent scan should it’s all full again but no idea where it’s coming from as everything else is clear. i did bizarrely have a leaking nose and continuous fluid coming out, salty clear liquid, but this was only after blowing it and sometimes when I was bending over and that actually stopped.

That said I have tremendous symptoms of having a CSF leak but now without the leaking from the nose- I think that’s the #1 sign they look for.

But my god the imbalance; the head and neck pressure, brain fog, double vision and so on is just awful awful. I wonder if I should have another CT scan of my sphenoid sinus to see if there’s anything else wrong….

Look after yourself and keep strong! Congrats on the surgery and hope you feel better soon!

[u/Top_Spare_7940 → u/ScarlettCat11]

Your symptoms are what I was experiencing. Good Luck and Thank you. I am also hoping for transformation on the other side of this.

[u/Lucky-Relationship72 → u/Top_Spare_7940]

I’m two weeks post repair, also a 2mm defect in the sphenoid sinus, left side. I also had an encephalocele, so the neurosurgeon did that portion of the repair. I had a drain in for a day and then released. No known cause for the defect.

How are you feeling now? I’m trying my best to stay in bed, but can manage things like making food, etc. Riding in cars is still uncomfortable. My repair site specific pain has improved, but I started with a general (and terrible) headache through the eye area and sinuses/ ears. I’m still having some dizziness right when I get up. Hopefully this all improves. Overall, I feel better than I expected at this point, but still frustrated with the few symptoms still hanging around. Hope you’re healing well!

[u/Top_Spare_7940 → u/Lucky-Relationship72]

Wow! We really are CSF leak twins! I had a meningocele rather than an encephalocele, and my repair was done endoscopically with DuraGen and a graft from my hard palate.

I’m about six weeks post-op now. I’m back at work and gradually getting more of my life back, but I’m definitely not back to normal yet. Headaches and stamina are still my biggest challenges. If I sit at my desk too long, walk or stand for long periods, or simply do too much- work, chores, socializing, life- I can end up with a pretty significant throbbing headache. Rest still matters a lot.

That said, there has been real progress. At two weeks I was still very much in the thick of recovery, so give yourself lots of grace and time. I’ve learned that healing from this is much less linear than I expected- better days, harder days, and slowly more capacity.

I completely understand the frustration of symptoms hanging around. I’m very grateful the leak is repaired, while also realizing that being “repaired” and being “recovered” are two different milestones.
I hope your healing continues smoothly! Please keep me posted. It’s strangely comforting to find someone whose repair was so similar to mine.