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AVM Survivors Network

AVM and climbing/high altitude

#1

Hi all,

I have a general question regarding risks and consequences of AVMs when going into high altitude. I have researched the internet and journals, but I cannot find any information about it. Only an older article stating that the risk of hemorrhage might be higher when going into real high mountains, which sounds plausible off course seen altitude sickness, blood pressure in thin air.

When last year I found out I had an AVM, my neurologist said I had no restrictions, only not to go into high mountains like the Himalayas. Which (besides all the other things!) scared me, because of 2 reasons. First, I had planned a trip to Nepal. Second, many years years ago, I was an active climber, and participated in one expedition to the Andes and climbed up to 6000 mtr. I suffered seizures and overall sickness (headaches, nausea), also for a long time after that trip. Also I had behavioral changes. Now I think it is because of the AVM getting active or irritated there. I feel super blessed it did not bleed then.

I would like to know if maybe anyone has had comparable or other experiences with an avm when going into high altitude (knowingly or in retrospective). Or if there is literature on this subject that I don’t now of.

Thanks,
Karin

#2

I have been told there shouldn’t be a problem with flying. I still don’t fly.

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#3

My only experience with altitudes and having an avm was that when I was in an airplane I’d fall asleep after a certain altitude and back then I didn’t even know I had an avm!! My friends and family were always envious that I would sleep the whole flight lol now in hindsight I was probably passed out and not asleep!!

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#4

Hey there Kare! I would suggest your neuropsychologist/neurosurgeon as many in this group, self included, are not doctors and would not be able to give you the definitive answers your looking for. However, a quick call or visit to your doc should get that answered pronto! Blessings!

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#5

Thank you for your reply! That was my plan to do too :slight_smile: but actually my doctors are not too informative overall plus maybe my question is so specific given that AVM’s are pretty rare.

#6

Thank you for sharing your experience! In airplanes the air pressure is more or less the same as on sea level my doctor told me. Different than being out on altitude.

#7

That’s what my doctor told me too! Airpressure in an airplane does not differ much from air pressure on sea level she said.
What I actually meant was being outdoors on higher altitude.

#8

I did have my appendix aggravated in flight and have to land and be carted off to surgery I think, but that’s cause my guts are giving out, so nothing to worry about for you!

#9

BTW, I have been on a plane several times, prior and after my diagnosis in 1988.

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#10

I have read somewhere a few years ago that going higher than 4500m with an active AVM is a no-no. Since I had a craniotomy 8 years ago, I’ve been to close to that in Colorado, but also summited Kilimanjaro - way over 4500m - without issue. Before the craniotomy I’d spent time in the Alps (not close to 4500m) , again without issue.

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#11

Hi @Paul_A thank you for your reply. Now that my avm is removed I feel 100%safe to go. I have spent much time in lower mountain ranges too like the alps and the pyrenees, also running long distances apparently with avm without problems. I think in retrospect the symptoms I experienced after climbing so high in the Andes were caused by the AVM (but did not know I had it). It would put some things in a different light, it changed my life course (that is why I would like to hear others experiences or read about it). But on the other hand, I know I must try to let the past for what it is and live forward!

#12

Oh @randombeggar that must have been a horrible experience!

#13

That must have been some experience as sure as Kilimanjaro rises like Olympus above the Serengeti

#14

It expedited the surgery when circumstances of necessity were shared. Of note, when you’ve got a gall bladder acting up, don’t go for the window seat on a prop engine plane.:nauseated_face:

#15

Yeah, it took a lot to drag me away from there.

#16

45 yr old male with unruptured AVM. I had what I was told was normal altitude sickness a few years ago in Colorado at about 7,500 ft, but at the time I thought I was having a AVM rupture/stroke. Really, really scared me, so much so that I’ve been dealing with anxiety ever since. What’s more curious is that my seizures, which were managed successfully through medication for years, suddenly started becoming not managed. Since then, I’ve had to up my seizure med levels twice which has had some negative impacts (memory, fatigue, etc). The biggest lifestyle impact is that I’m no longer driving. I’ve had seizures more frequently…even during the daytime (which never happened before). Indeed, nothing like this ever happened to me before I had that episode in Colorado, and while my doctors do not believe the two incidents are connected, I have a difficult time believing that they aren’t.