Why do avm patients get on airplanes?

My dr told me no airplanes no high altitudes. And why does no body elses dr not tell avm patients not to fly??? Not to ride roller coasters. No sports. Don’t fall. Just wondering.

As long as your blood pressure is stable, I can not see why it should be a problem flying with avm?

Hanne

Hi Superjenlynn - Unsure, but it might depend on risk of bursting/stroke or whether avm-free???

My neurologist did not have a problem with it. But then again every AVM is different!

Before I had radiation on my AVM I would get excruciating headaches when I flew. Once I had radiation I didn't have that anymore. I'm wondering if the pressure was putting strain on my AVM. That may be why he's telling you not to fly. Did he say forever or until it's obliterated? I was told not to go on roller coasters anymore also, which stinks since I love them. But I just think I'd rather be alive then going on a roller coaster!

Some background info: Modern jets are pressurized to equal the air no higher than 8,000 ft. Newer planes are equivalent to 6,900 ft, 5,000 ft, or as low as 4,000 ft. Unless the cabin has a sudden depressurization (when the O2 masks drop), riding on an airplane is no worse than sitting on the ground at Denver or such. It could be a risk I suppose, if the plane depressurizes, but anymore, that's a fairly rare event.

Our Drs at Stanford had no problem with us flying out/back about 6 times total for treatment. Two of them were within 3-5 days of having major brain surgery.

Ron, KS

I think a lot of this has to do with the stage of your AVM, and if you have an active anyurism involved. My AVM was glued, and my doctor has no problem with me flying.

My doctor told me that it wasn't a good idea to get in a airplaine or rollercoaster as well. Now that the biggest danger is gone I can do whatever I want. I am going to the gym now, and my headaches do increase, but it doesn't stop me from going. I had these things in my head for thirteen years, and in those thirteen years I did more dangerous stuff then going to the gym. And I am still alive :P

Hi Superjenlynn,

Great question! That's some really great info Ron, thanks for sharing! Just a thought... ask your doctor why he (or she) told you this based on the answers you got here. I was trying to figure out a few things too but then I thought, why not ask the doc? That would eliminate a bunch of variables and answer your question at the same time. Barbaras right, every AVM is different so it's probably impossible to tell without asking. Best of luck to you. :J

I was told not to PILOT planes, no problem traveling in them! haha -GK

If the airplane thing is true, God was surely with me in 1975. I was in Florida when my first bleed occurred at age 19 and was sent home to my parents on a plane while still bleeding! In fact, wasn't even diagnosed as bleeding til I got home. No worries today...can't afford to fly anywhere anyhow LOL.

If you ever rode on an older McDonald Douglas jet, you'd remember--every time they spooled up the engines or down on decent, the cabin pressure changed! Not fun, especially if your sinuses were plugged. My ears typically hurt when they powered up for takeoff, then they'd relax at altitude, then start up again.

I'd have to go look again, but for a long time, the Boeing 767 had the lowest equivalent altitude (meaning you didn't feel as far up). The new 787 is like 4K feet IIRC. Not sure about Airbuses............

Ron

My neurosurgeon told never should u know u have avm. To never fly unless avm is gone. It sucks cause I love to do fun stuff. I really got upset when I realized that I could not go to the top of the stratosphere in Vegas where I live. Sucks roller coasters rock. About five years ago a 12 year old was dead at end of ride because avm bled probably due to the jerking up and down. I dont know but I can take chances. Maybe iota different for everyone. Not sure but my doc said no airplanes and high altitude. Just wondering. Thanks so much. I bet ur pain was from ur avm. Super Jen

Thanks for reply. I bet it has to be different due to status of avm’s. It scares me though. I never in my life rode on an airplane. Was one of top things I wanted to do cross country traveling. Thanks again. Super Jen

That’s what I’m learning is that it probably depends on how avm is doing or size locations. Different types. I have two. Type 2 and type 4. Inside and connected to one on outside with fistula and feeders. Thank u!! Super Jen

That’s great. Yeah I bet it sucks though. But it could turn out bad for everyone then. Laugh out loud thanks again!!s. super Jen

Yeah after reading so many different answers that avm survivors said their doc said yes and no. So it probably depends on size location blood clos. Etc. mine are in spinal cord at breast level. Blows big time just lost everything below neck for five years now I have like 40percent feeling. Pain rules my life. But they will find something that helps avm stroke at 23 years old. Been walking mostly for four years with slight jerk on rt side take care and thanks!! Super hen

Hi there, 2 days ago I had stereotactic radiosurgery, I live in the far north of New Zealand & the only place that does radiosurgery in this country is in the deep south. I flew down, had the surgery and flew back the day after, this involved 5 flights this week. My doc's told me that because cabins are pressurised there is not a great risk, the only prob I had was tiredness from a long trip :)

I was never told this, my initial information is a little limited. No heavy lifting was the main thing. I was told I could keep playing squash but I decided not to as it made me feel a little twitchy. I asked about planes and roller coasters - planes no problem, coasters 'maybe worth avoiding' but not a definite no.

It's difficult as there is no definite answer to many questions. I just listened to my body and tried to use common sense. Flying is a difficult one though because of a doc has told you not to fly then you'll never get insurance.