Since we are relatively new to this whole thing, I was wondering if anyone had any experience in roller coasters or airplane trips since their AVM’s were found/ or since their AVM’s have been treated? Our children want to go on a trip and that trip includes a visit to an amusement park and we are thinking about flying to Ohio for Christmas. Any thoughts or experiences are welcome.
Well I have to fly down and receive treatment for my brain avm and I fly back the same day or the day after so they tell me, but who knows hope this helps a little
I’ve flown many times after my AVM and before gamma knife healed it. Check with your doctor because it depends on the size and location. I know some folks are told not to exercise much and some are told to exercise like the AVM is not even there.
How bizarre! Last night when as I was trying to fall asleep I was wondering about AVM’s and roller coasters and flying and then this morning as I’m drinking my coffee I see that you posted exactly the question that I was wondering! Am I in the twilight zone?!?
I’ll be looking forward to reading the responses. I’m assuming that the location of my AVM wouldn’t interfere with doing either of those things as I think my neurosurg would have mentioned it but since I didn’t ask specifically I guess I shouldn’t really assume.
I was told that flying was perfectly safe…but it was the roller coasters they said were not safe for me anymore. When we go to amusement parks I just try to go to the water parks instead and it is a lot COOLER! I used to be a BIG TIME roller coaster freak! Loved them…but now just knowing that the doctors have said it wasn’t safe just terrifies me of them. Now there are some smaller ones in some parks that you dont have to worry about going upside down on or worry about your head hitting something. And I have been on a few of those. Lol…love the Road Runner Express!!! Most importantly…just ask your doctor about it because everyone is different and their bodies react different to things. So just talk to your doctor
I have flown a bit since my 1st AVM once my medication was sorted out. Last year flew a total of 42 hours in 6 weeks and no problems.
I was told when first diagnosed that I could not fly till my epilepsy was controlled with medication, I waited 2 years to be safe (and for insurance)
I also have flown many times. As others have said it’s an individual thing. I have only one time had a problem at that was just the audaciousness of the flight and the excitement brought on a small seizure. I completely agree with the docs RE: the Roller coasters to much head trauma with the bouncing around and jarring. Although like an IDIOT I just had to try it mail ignorance set in and I went on the Batman ride in Las Vegas and My head was swollen and a tough head ache for the rest of the time there. I can look back and say I did it but reality is it was stupid. Ive done many silly things since surgery such as climb Mt Whitney in a day against Docs orders just to say I did. I don’t believe in living in a padded box as you can see. Otherwise I would be a reck like they said I would be as I’m sure all have herd before.
I went on a coule of flights between the time my AVM was diagnosed and the time I had my surgery. For the most part, I didn;t have any trouble with flying, though there was one trip that left me feeling very ill from the moment the plane landed and for about 3 days after. I was nauseated, a bit dizzy and just didn’t feel quite right in general. Since it was an isolated incident, it’s really hard to say if it was related or not, but it’s certainly worth noting.
A month before my surgery, my wife and I got married in Tahoe, CA, which is at a consilerably high altitude compared to where I live, which is basically right by the ocean. The surgeon said I should be OK, but wanted me to take things easy, especially ue to the high elevation. Of course, I don’t know if he was referring to the altitude itself, or the fact that I as going to be on my honeymoon! At any rate, I was fine.
I have been on a few flights since my surgery and even made a trip to Disneyland about 9 months after my surgery. No problems for any of the above, but I must admit I was a bit nervous about all of the above, not so much from the AVM recection, but from the following seizure activity. I have not been on any wild thrill rides… Matterhorn at Disneyland is about as crazy as I’ve been on in about 5 years, but ven before my surgery I went on some pretty high G-force rides with a golfball-sized AVM in my brain and made it just fine.
I’d suggest speaking with the doc, but in my own personal experience, I would imagine that just about any plane with a pressurized cabin would be fine unless the AVM is VERY weak.