csf leak & Flying

[lisalailey]

Does flying effect HA's, I really want to go on holiday end of year with my family weve not been anywhere before and of course my first thought is how will flying effect my HA's? :confused:

[LauraL840]

DH flew in May across the states (5.5 hour flight) and it didn't affect his HA. I mean, it got worse, but that's because he was doing a lot more physical activity than usual and any increase in physical activity makes it worse!

He'll fly again in Feb when we go back to LA for surgery.

[Concerned Gal]

I have avoided flying since symptoms started (3 years this month :(). I will continue to avoid it however if i need to fly somewhere i guess i'll have to give it a go.

FWIW on the old board (prior to crash) I am sure I read a thread once 'against' flying with a csf leak. This is probably what has stuck in my mind and encouraged me to avoid it whether valid or not.

Tamaretta - do you have thoughts on this at all? I remember Taylor flew recently.

[CSFChallenged]

Hi,
Yes, many of us have had concerns about flying and I finally flew 3X ( 5 planes) this yr. for treatment (after 6+ yrs. of leaking). Local docs said no flying, Dr. S said yes, & others simply didn't know.

I decided to research, and spoke with multiple docs who specialized in transporting critical care patients with intracranial pressure/brain issues, post op brain surgery patients etc. I finally got some good advice from a former Nasa Flight surgeon who is currently operating private chartered charity medical flights for critical care pts.
He stated that obviously with any intracranial pressure problem (high or low) a flight can cause increased symptoms or no change at all and one should consider these guidelines.
Avoid unpressurized cabins or small planes
Fly in the largest plane you can, ie bigger than a 737 to decrease effect of turbulence, minimize cabin pressure issues (in the smallest medical transport planes, they actually fly at whatever altitude they need to, to keep pt pressure stable or medically manipulate.
Avoid seats in the back of plane and seats on the wing (rougher ride)
Bring soft doughnut type neck pillow. Lumbar pillow for back pain
If symptoms of brainstem compression/chiari or unstable cervical spine ask physician to prescribe Aspen Collar (soft cervical collar) and have it professionally fitted. Wear during take off/ landing to protect head from snapping back due to rough take off/landing/turbulence.
Choose best/largest seat you can to recline (the back of 1st class has less recline, don't waste your money if this is the only seat left and you need to lie down).
Maximize hydration if low pressure, maximize diuretics if high pressure(you still need to hydrate, just make sure pressure is down)
Have an current medical ID card/adequate meds/emergency#'s.
Bring records, and locate largest teaching hospitals nearest your destination before trip. Make sure hospital is close enough. Avoid remote areas without transportation.
Ask for medical assistance from airlineI also found a website called seatguru.com, which allows you to choose an airline, choose the exact plane type, and it will show you the best or most comfortable seats on that plane. Not every bulkhead is the greatest, nor every first class. It was much more helpful than trying to ask a ticket agent or even some of the people who are supposed to be in charge of their airline's medical upgrade flights. (Note, you may have to look at # of seats, as sometimes an airline has several versions of same plane, american, vs. french version etc)
As far as actually flying, I did have a tough time but I was leaking from T2 to L3/4 and could barely walk. Most people have an easier time of it. My seat choice and plane size made a heck of a difference. So I would check out seatguru before buying tickets. I also have a tremendous amount of ear pain, which was not relieved by the normal tricks. I wore small foam ear plugs and small sound canceling headphones which helped tremendously. I'm sure I was quite a sight, with my brace, chair etc., but I made it! I later flew to go on vacation, and God must have been smiling down, because it was worth every minute of family fun. I can't comment on your particular leak status, and your doc's advice, but I know that taking care of family and relaxation is very important as well!!! Just be safe!
Good Luck!
CSFChallenged

[Blue skies]

Hi Lisa

My DH has flown several times since the onset of his spontaneous leak nearly 3 years ago. He has had no adverse consequences on short haul (up to 4 hours) except for the discomfort of sitting in an upright seat for long periods.
When he has flown long haul (8-10 hours) between continents he has been significantly better afterwards for several days.We don't know why - and nor do the doctors (planes fly at higher altitude for long haul, I think) - but there it is, another mystery of this condition!

If you are planning a holiday, it's worth also talking to your travel insurers as they sometimes exclude pre - existing conditions, so that might influence where you want to go.

[lisalailey]

Thanks for all your comments everyone, given me some things to consider when going on holiday, thankyou all.