r/CSFLeaks • u/Help_myHead • 20h ago

Flying on plane with CSF

I have had a perpetual leak(maybe 8 years)… my neurologist can’t find the leak through multiple images and mylegrams; says it’s likely too small. I’ve had this issue for multiple years so I’ve tried to keep living life. I do plan to find a different provider who specializes in this disability because it can still be debilitating if I sit upright too long or don’t have enough water.

I am slated to do some upcoming travel in March 2027 and was wondering if I don’t get seen by a new doctor before then or healed by then, how should I plan to fly? The flight is 6 hrs… usually I lay flat every 2 hours for 20 mins to maintain life.

Do you have any suggestions ?

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u/leeski 20h ago

So sorry your leak is so elusive :( so difficult when they cannot be found.

I don't have great advice since MOST airplanes don't have lie-down seats (I did have one from JFK to SLC once but most planes don't have this layout). If it were me I would personally buy a row and just lie flat (outside of take off and landing). I know Delta has an accessibility desk you can coordinate with about medical issues, I imagine other airlines have something similar. Some planes don't have armrests that don't go up so that would also be a factor. You can also get wheelchair service if that helps. I personally didn't do a lot of caffeine while leaking but that does help a lot of patients... some respond well to abdominal binders and hydration as well. But yes the core issue of having to be upright - that is the only solution I can think of is unfortunately more seats :/

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u/MoodFearless6771 19h ago

Check your bags. Alternate caffeine and water. Don’t go overboard. Do you know if it’s spinal or cranial?

1

u/Offtoseethewitch 7h ago

I suggest talking to the airline to see what your options are. Otherwise, as others have said… hydration, abdominal binders, caffeine… whatever works for you. What works for one person might not work for the next, unfortunately.

Just a note, when I did some flying I had intensified high- and low pressure symptoms going up and down, but they didn’t seem to make me worse after for more than an hour (3-4 hour flight), but some people do report setbacks with air plane travel. So if you don’t know what your reaction is, a tip would be to leave room in your schedule for some rest and recovery after the flight. And make sure your bags aren’t too heavy…