CSF leak after C1 revision

I recently had a C1 shave. Prior to this I suffered from raise compression and what I believe to be a cranial leak, but at the time my neurologist was looking for spinal leak. After C1 shave, I experienced high pressure again, which has now calmed down - this happened 2 weeks after operation, so I wonder if it could be my sleeping position. Since this high pressure I’ve had fluid coming out of my right nostril. I also feel unwell being upright again. My consultant isn’t here now for another week as away. I did tell him about my symptoms but he didn’t feel I had a CFS leak. I didn’t mention the fluid at the time, as I thought perhaps it’s just an allergy thing: I now worry that it’s more than this.

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I’m sorry that you’ve experienced this- it does sound as if there could’ve been a CSF leak…I wonder if perhaps swelling following the surgery contributed to the high pressure & then caused the leak if you have a weakness? But hopefully as the swelling goes down, your IJV will be able to take more venous blood flow and your intracranial pressure will stabilise. Are you still icing your neck? That can help with swelling, and if you are able to tolerate being a bit propped up to sleep it might help as well? Once the incision has all healed you can do massage in the area if it’s not too painful, there’s info here:

How to do Lymphatic Self-Massage on Your Face, Head and Neck

It can take quite a while for the blood flow in the brain to adjust after surgery, so I would try not to be too anxious, easier said than done though, I know! Could you speak to Mr Axon, I know he’s not a neurologist but he is very knowledgeable , and he works with Mr Higgins who specialises in IH…

Praying that this does settle and you start to improve soon :hugs: :folded_hands:

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Thanks Jules I’m due to see him in a couple of weeks. Do you think icing in week four will still help? Is heat better or ice? I’m trying to just accept this how I feel right now and to accept that I have to do less. My nose isn’t running now (unless end of day) but I can’t be upright long before feeling very fatigued

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I think ice may well still help, probably more than heat…I hope that this improves :hugs:

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Extreme fatigue for 6-8 weeks is not uncommon after ES surgery, @Hamonrye. If you do have a leak then that could also be contributing, but take heart that your body will stop feeling so weak & tired as your brain adjusts to the new level of blood flow & your nerves recovery from surgery. The whole process can take quite a while & listening to your body & not overdoing things for several months after surgery helps a lot in allowing recovery to make good forward progress. :heart_with_ribbon:

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Thank you. I’m now back in high pressure. I’m hoping things calm down soon.

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It’s a tough recovery, it is still early though, try to keep strong :hugs:

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