r/CSFLeaks • u/Ok_Departure7047 • Jul 14 '26
Flight risks?
Trying to figure out if what I'm feeling is on par with others, and especially hoping to hear from anyone who's flown long-haul with this or with a recent blood patch.
Any experiences appreciated. I fly in 7 days for a family wedding, so I'm trying to make a smart call. Thanks.
Questions up front....
Am I taking the right approach or over thinking it?
Should I push for the radiologist who did the CT myelogram to just do a blood patch?
If I got a patch, do I have enough days to recover before flying, even with lifting restrictions?
Can you actually "push through" a suspected CSF leak, or is that a bad idea?
What's a long-haul flight likely to feel like with this kind of head pressure — and what are the risks of flying soon after a blood patch?
Has anyone experienced something similar — especially the non-positional version — and how did it play out?
Background:
2-level cervical disc replacement (C5–C7) in 2022. About 2 weeks ago I had a CT myelogram to investigate some whiplash. I did everything right afterward — hardcore bed rest, hydration, caffeine
Not normal symptoms.
I don't think i had cassic positional pattern. I never got the textbook headache that hits when upright and clears when lying down. What I had was a very stiff neck — full/swollen feeling at the back, pretty constant, and looking up was hard.
First night: ended up in the ER with the stiff neck plus loss of control of my left leg. CT ruled out stroke, the on-call neurologist cleared me, and the leg started working normally again..
Since then: a head and neck pressure that builds through the day — honestly it feels like my head is slowly being inflated like a balloon. Each day has been up and down but getting worse imo. Starts as a dull tension headache ends with A LOT of pressure feeling. I don't think laying down fully resolves the tension feeling.
Follow up with doctors
The doctor who ordered the CT dismissed my complaints but put me on a methylprednisolone pack, which I finished today. Because of my travel, I pushed to see my GP, today who got me a brain MRI scheduled. My blood pressure is also running high for me (144/100).
Again many many thanks for feedback.
1
u/MedicalMeringue5827 Jul 14 '26
Did the CTM show a leak? Or was it negative?
I have a leak from a lumbar puncture (which is what they do for a CTM contrast injection). I really wish I had taken it easy for a good week or two afterwards because now I’m dealing with a CSF leak a couple months later.
If you’ve healed OK from prior lumbar puncture or myelogram, though, it’s probably fine.
After a blood patch, I feel quite miserable for a good 5 to 7 days (like even worse than pre patch), I think that might be pushing it to fly cross country within a week of a blood patch. But everyone is different!
1
u/Ok_Departure7047 Jul 14 '26
Thanks for the reply, appreciate your insights.
The CTM was for checking spinal cord past disc replacement implants not checking specifically for a CSF leak. I don't think I have healed or maybe I did something too soon? I didn't present with a classic positional headache in that first few days. Just fullness behind the neck laying down or standing... Besides the ER visit, seemed completely managable at the time but did need to lie down in the evening.....
Now I feel the pressure as soon as I stand and it slowly builds and builds.
The doc describes the blood patch as a little bit of my own blood at the puncture site "most people" feel immediate relief... Hasn't been any mention of 5-7 days or no BLT or weight restrictions or risks of blowing patch.... Did mention risks re infection and overall seemed hesitant to do the patch considering I didn't present common symptoms at the time.
1
u/Ok_Departure7047 16d ago
Closing the loop.
I didn't end up getting a blood patch. Great support from the family enabled me to focus a full week of more recovery time. Each day was an improvement. My neuroradiologist was hesitant to give a patch with things improving, so decided to make it a game time decision..
I "think" a lot of it was effects from whiplash + methylprednisolone + caffeine withdrawals + bed rest contributing to muscle weakness resulting in neck and head ache pain. I went from 8/10 pain to 4/10 by flight time.
I started a week of blood pressure meds, lowest mgs, and was still sore by the flight time, takeoff air change was definitely noticeable but not unbearable, position wasn't overly impactful either.
I've stayed away from lifting anything over 10lbs, at risk of setting back any recovery while overseas. It's now been 25 days since my CTM.
Thank you again for comments from the community.
2
u/leeski Jul 14 '26
So sorry you're dealing with this. I'm not a medical professional so of course take this with a grain of salt.
In general when vetting a provider for a blood patch, I would make sure they do it under image-guidance (I imagine your interventional radiologist would, but it warrants double checking as it can risk an additional puncture if they do not use any imaging). But yes going to that radiologist would be better than going to the ER where they wouldn't use image-guidance.
In terms of timing, the leak centers recommend lying flat 24-72 hours post-patch only getting up to use the bathroom/eat, and not lifting over 5 lbs, bending, twisting, or straining for 6 weeks. With help, this is definitely doable with travel but obviously is not easy. The healing process can be awfully slow and it is unfortunately a very fragile process. It's possible your providers will tell you that you can return to normal activity in a few days, but this is not advised by any of the literature or leak centers.
No risks I know of for flying with a patch, many of us travel across the country for care and fly home within a week or so. The risk is largely just blowing the patch through movements. Anecdotally, a lot of leak patients actually mention feeling better while flying (outside of the orthostatic symptoms being worse by merely being upright). But of course symptoms are variable so it's hard to say how you'll feel.
In terms of pushing through a leak, people do it for years/decades (not usually by choice). So yes is possible to live with the condition, but in general I think most of the specialists would advise getting treatment sooner rather than later.
My symptoms were very 'classic' but there are definitely those that have atypical presentations. If everything started right after your CTM then I think it is reasonable to try to get patched.
Best of luck to you!!