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AVM Survivors Network

Altitude 18 months after gammaknife


#1

Hello!
I will make 18 months post gammaknife in the 14 of June, I have some friends going to Peru and I decide to go crazy and go too! I was super excited but today I went to an appointment to get the vaccine for the yellow fever and the doctor told me that i shouldnt go to any place above 2000 miles altitude because it will increase the body effort to take oxygen to my brain and put me at risk of avm rupturing again :frowning: my neuro never said anything about altitude; does anyone have any recomendation concerning this? i m feeling very sad…


#2

i haven’t heard of that Rita. I have flown several times post bleed, it is basically like being in an airplane is similar to being at 2000 ft above sea level. That is unless the cabin looses pressure and need the masks, not common. I’ve been told no scuba diving or sky diving due to pressure increase. I don’t plan on scuba diving and if I’m jumping out of a perfectly good airplane there is way bigger things to worry about! Probably worth a call to neuro though, take care, John.


#3

Hi! By plane i have no problem, my problem is that macchu picchu is 3500ft and i dont know if it raises the risk of another rupture, have you heard about altitude sickness?


#4

Haven’t heard of altitude sickness per se, I think the issue with altitude is the pressure, although the higher the less oxygen there is. I don’t know if there is a relationship between oxygen and blood pressure at elevation, as increased blood pressure could be problematic. John


#5

Rita

Are you talking 2000 metres or 2000 feet? 2000m is quite high up … I think Macchu Picchu is about 2,500m above sea level.

I think the doc is talking about your oxygenation / sats levels. If some parts of your brain have pretty low flow of blood to them, then really poor oxygenation could lead to you not getting the oxygen you need and (I think) getting some necrosis or feeling very faint / light headed / altitude sickness.

If he/she’s already warned you about living at altitude, it seems wise to me to have another conversation with him/her about it. I hope the conversation goes the right way but it does seem like it is sensible to check.

I don’t think it is the flight that’s a problem, it’s the living at altitude.

Hoping the best!

Richard


#6

Hi!
The higher it would be cusco 3399 meters, i m very sad, now i see that i was not thinking and all of these opinions on Internet are making me afraid and my friends also for being with me. I will try to Call the neuro tomorrow but i m already thinking if i can be money refunded :frowning: i read on Internet that altitude can cause brain edema… Isnt that what we have from time to time with radiation?


#7

That’s a hard choice rather to go or play it safe for a while. I went by plane a year after surgery to a family members. I was air lifted to the hospital by plane when my AVM ruptured but it wasn’t near as far and not that high in altitude.


#8

18 months was the initial period of time that my neuro told me the avm would probably close… And i m feeling pretty fine… “only” thalamic pain… I m trying to reach the neuro to ask him :confused:


#9

Hi Rita, everyone’s different but when I went there (and I didn’t know I had an AVM then) as soon as I got off the plane I felt really sick and found it hard to breathe. Two days later I managed to climb the mountain but by day 4 I was carried back down on a donkey as I was extremely sick and had diarrhoea. I had no idea I suffered from altitude sickness until I got there, it is extremely high!! So please be careful.


#10

Really?? Do you think it was avm related or that risks an avm to bleed? How did you find your avm and how much time after that trip? Thanks!


#11

Hi Rita
I don’t know if it was AVM related and mine wasn’t found because of that. But what I mean is if I felt like that again especially because of the intense headaches and dizziness I felt as well , I would be extremely scared about having an AVM. Sorry its just my experience, everyone is different.


#12

Yes thats True :frowning: i dont know how i will react and its scary having an avm… As the company wont refund my trip, do you think i should avoid cusco and macchu picchu and only go to cities maximum 2500m?


#13

Hi Rita,
Yes it is very scary and I really feel for you as its so frustrating.
That’s terrible that they won’t refund your trip.
If it was me I would definitely avoid cusco, which is where I flew into, and machu picchu. For the rest of Peru, which I travelled round first, I was fine and it is a beautiful country. X


#14

That sounds like your doctor’s advice to me. Look up other places to see in Peru and see those; promise yourself to go back another time, too. You’ll never get a decent appreciation for a country from one visit, anyway.


#15

Hello @RitaF. Just my thoughts. I don’t know if you have had a chance to discuss this in depth with your Neuro specialist yet. But if the only concern is oxygen supply at altitude, have you researched the possibility of renting a portable Oxygen Concentrator? There are companies that provide that service (OxygenWorldwide comes to mind but there are others). I don’t know the cost and I’m certainly not endorsing that company but offering a possible alternative to the already great advice provided.
Brent


#16

Hello all and thank you SO much for all your support, we really are a family :slight_smile:
Well today i went to the neurosurgeon, what he said : he coudnt, medically speaking, say for me to not go because avms are so unpredictable (as we know) that are no studies to support that, but that is statistically speaking, he cant say it does harm, but good it definetely doesnt. When i asked should i only go to places with no altitude? He answered again medically speaking i cant say anything, but do you want to be in a third world country with an avm that can bleed? Why dont you want one more year, see the avm, as we expect, cured, and then travel wherever you want with no fear? I m going to respect him… I really love my neuro and the way he is and gives me serenity and just dont give me the general recommendations as all the others, he is right and i would go full of fear! Now i just want a miracle for the money of the trip to be refunded :woman_facepalming:


#17

Its Cabin pressure during flight that you need to be concerned about. The Plane is oxegenated just fine.

We shouldn’t fly, or dive due to pressure differentials. Cabin pressure in large commercial airliners is supposed to be automatically controlled, but not always, and can’t be trusted. Cabin pressure is controlled manually in small planes. When a pilot turns the cabin pressure system on or off can’t be trusted, and can’t be trusted to occur consistently going up or down.

Use the same logic when driving or travelling (hiking, biking, etc) on land, to high elevation. If the pressure is greater inside your body and brain is greater than atmospheric pressure, or if diving due to water & air pressure at depth under water, this is when we are at risk.

Cheers
Ed


#18

Hi Rita,

I haven’t been on the forum in quite some time so after logging in I saw your intriguing question and decided to respond. My personal experience dealt with altitude since I happened to be both an AVM survivor and former airline employee. I do want to stress that my this was based on my own personal experience and in no way should be considered as a substitute for expert medical advice.

After being released from the hospital almost six months after my hemorrhage (AVM) I requested to perform my own physical therapy. The reason for the request: I wanted to rediscover my freedom again especially after a difficult six months. Upon my follow-up visit six months later my doctor said I was doing fantastic! I only had two questions for him. Can I return to my normal activities such as flying, riding rollercoasters, etc. His answer: You go do whatever makes you happy except for the things that are detrimental to your health such as smoking, heavy alcohol use, etc.

That was my green light to do the things I enjoy such as flying, riding coasters, etc.!

So my personal advice is to smile and go for it.

Take care,
Michael :sunglasses:


#19

My cerebral AVM bled in 2014 then I had a Stroke from embolization treatment in 2015 . I had gamma knife treatment 2017. I recently moved to UAE from UK and was told flying is fine because of the regulated cabin pressure. But the Gamma knife hospital said not to go on roller-coasters even tho I had just been to Disney land. (too late)


#20

Hi
My Doc told me no problem with flying after finished radiosurgery. But i choose to wait till i’m fully cured.
I think is not worth taking the risk & unable to fully appreciated the trip with an AVM inside the brain.
3 years passed & now i cured. Plan for a trip end of the year :slight_smile:

Just my thought