Hi all,
I’m year two with an embolization of my AVM - my neurologist does not want me to air travel - fly ever again for risk of stroke.
Has anyone flown since their AVM embolization? I haven’t traveled in the past two years and finally feel well enough to travel.
I welcome your feedback.
Thank you!
Hi Lorraine,
I had a much more peripheral AVM than you embolized in 2017 and have never been given any restrictions, so yes, I’ve flown multiple times since my op. However, the assessment of whether you’re safe to fly must be very much specific to your situation.
I think if you’re keen to be able to fly, getting an updated opinion or a second opinion on your safety in this regard might be the thing to do.
I am convinced that I’ve either read in @memyselfandeye’s book, or on his website (or he may have told me) that Dan had been flying from the UK to the US or Canada some years ago and had a bleed mid flight. Now, the position of Dan’s AVM means that I think he tends to have nosebleeds rather than bleeding more internally and so it was a big nosebleed that he suffered from on that flight but it strikes me that getting a professional opinion that says “avoid flying” can be rare but very sound advice.
Hope these thoughts help!
Richard
Hi Lorraine. And thanks @DickD for tagging me (as always!)
Yes it’s true, I did have a pretty catastrophic bleed 24 hours after landing in Canada. However I think there were numerous reasons for this: dry air, drinking on the flight (not a good idea) and me not taking precautions properly.
Since then I’ve flown to the USA twice with no issues whatsoever. Hydration is key and I use vaseline to keep my nose dry. Appreciate nosebleeds are a different bag however.
As Dick says, I would get a second opinion. To never fly again is pretty debilitating, and - frankly - life’s too short 
Keep us posted.
Dan
I never actually asked any of my neurological staff. But, I have never actually flown after having my bleed at all. It has definitely been a bit of a concern.
Thank you for your feedback. I’d be interested to know what other neurologists recommend. I live in Connecticut but have family in Italy. My husband has traveled there without me. AVM is a rare condition and not a lot of research or information is available.
What I was going to do when I get the time is take the shortest possible flight somewhere.
Although, a big part of me is still not exactly looking forward to it.
I’ve read one member’s post on here, she had to fly back after getting her embolization. She had some minor issues, but she flew right after getting the procedure.
And, yes - research on anything we deal with is very difficult to find.
Yes, people do fly and I also remember someone in the US or Australia flying to & from their operation because there was no other choice: they obviously lived out in the countryside somewhere, not in a city. So AVM patients definitely do fly and I seem to remember most being told it’s fine. So to have a neuro say “No” is challenging but may well be very good advice based on what she or he can see.
Thanks for the advice. I have already suffered two strokes and not interested in having another. I’m taking notes to share with my neurologist on my next visit to discuss.
Hi
Ive had a rupture and avm surgery over 30 years ago.
I didn’t fly for maybe 2 years but since then have had no problems flying over 50 times.
However your neuro team may have reasons for their advice.
Tim
Thank you for your response. My AVM was embolized - it’s still present- just the blood flow was cut off. One of the questions I’ll ask my neurologist is if the Onyx is the issue or weakened vessels.
I’m happy to learn that you are able to travel by plane.
I did not nave an embolization, but have flown extensively post bleed and gamma knife. I once read that a pressurized cabin is similar to living in Denver, Colorado. I did a little looking and found a cabin is pressurized to around what would be similar to 2438 meters or 8000 feet. A little higher than Denver, but Aspen Colorado is right around that mark. That is what I used to make my decision about flying. I think the fear is the cabin de-pressurizing, and requiring the oxygen mask etc…fortunately I’ve never experienced that! Something to think about, and maybe help in a discussion with your Dr. We are all different for sure, and without a doubt want to limit our risk, and I am a believer in listening to my Dr. but also a second opinion if I have doubts! Take Care, John
I just came back from high country here last weekend. It’s 7,000 feet, the way up I was ok - the way down sucked pretty bad. It took a few hours for my head to normalize. It just feels like added pressure behind my left ear drum - yet, the right felt way better
Thanks for your response. I have the same - when I go to the mountains - any height over 5,000 ft for me is brutal. That’s why I’m so concerned about flying as well.
@lorraine Hello I have a DAVF two angiograms and one embolism second time they said some of the veins and arteries had sealed themselves and the rest if they touched might paralyzed me and I already been through that- like you I also have had two strokes and get sick if I go to the mountains.
I have flown a few times and each time I wear compression socks onte time I did not and that was a short trip to Vegas and I ended up icing my body down.
The longest I have flown is about five hours both from SF to Maui and to NY - I do get nauseous on the way down and usually get a headache the next day. I do want to go to Italy but I think I will have to break up the flight and Stay in NYC for a few days just to feel comfortable.
Maybe take a short flight
Hugs
Angela
This information about your experience is very helpful. Thank you. I finally feel stable or that I can manage my current deficits- I’m a bit risk averse at the moment. Your experience is reassuring.