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 
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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
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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. 
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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
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How are you doing?
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The csf leak is very unfortunate. I’m sad to read this. Does it go away? Is there a way to avoid it?
Not great tbh. Constantly fluctuating between high/low pressure. Still have intermittent fluid coming out of my nose. I need to try and collect but this is very difficult.
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I am deeply sorry. I will pray for you today. Are you able to get an urgent consultation with your doctor?
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I’m sorry that you’re still having this after surgery , did you have a follow-up with Mr Axon?
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@contactsiri - CSF leaks sometimes heal on their own (i.e. the body creates a “patch” to stop the leak) once the pressure in the brain is reduced via vascular decompression or whatever else may be required. Unfortunately, there are cases like @Hamonrye’s where the leak may need to be patched surgically. It’s possible there is some other point of compression that needs to be dealt with in her case or something else is going on that is causing the leak to persist.
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I am seeing a neurologist next week. Thanks for your kind words xxx
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Thank you @Isaiah_40_31. You’ve taught me so much. You are a blessing to this Forum. You are reassuring too. May I ask how you became so remarkably knowledgeable about all of this?
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I did and will continue to pray for you. … my oen suffering is severe and it makes my heart heavy to learn of others’ pain. I’m grateful you’ll see a neurologist next week.
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I did have a follow up. He felt it was unlikely to be CFS, but as I’m sure I had a leak earlier this year I feel it’s possible. Hopefully, the neuro can shed some light. I’m back to not being able to be upright for very long. It’s like my brain is being sucked down to the floor. I don’t have so much of a headache. I just feel uncomfortable when upright. Lifting even a lightweight object feels unbelievably heavy.
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@Hamonrye - I’m sorry but I’ve forgotten if you have/had bilateral IJV compression. If so, you may need to have the other IJV decompressed to get the best results. I’m sorry for the downhill slide after you felt a bit better. Have you been checked for other compressions such as the transverse or sigmoid sinuses in your brain or something lower down like TOS?
I hope you get some helpful information from the neurologist you see. Please keep us updated as to how things progress for you.
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@contactsiri - I’ve been on this forum since 2014 and have learned what I know from the members here, from reading research papers, & sometimes doing my own research. I have observed 3 ES surgeries, so I could better understand how they take place, which was a fascinating experience!
My dad was a doctor so I’ve always had an interest in medicine/the human body but wasn’t driven enough to become a doctor myself. Being diagnosed w/ ES was a gift from God as moderating on this forum has given me purpose that I lacked prior to my diagnosis. 
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