Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

0 Online

Chiari and air travel

Is long air travel (about 9 hours) safe for chiari patients?
Does the headache, neck pain, nausea become worse at a high altitude?

Replies

beck2
beck2

I don't know about Chiari, I have syringomyelia and I asked my neuro if I could fly, and he said there shouldn't be a problem. I flew on a very short flight to Vegas and it was very uncomfortable. I did not explode, however.
deleted_user
deleted_user

My doctor said it was fine, but I've always gotten really bad headaches on planes. It could be unrelated though.
ROZIA
ROZIA

every one is so different . I fly atleast once a year to arkansa and arizona .. they are short flights but have no problem..
deleted_user
deleted_user

I flew twice last year before I found out I have chiari... it definitely made me feel worse! I went from Saskatoon to Tenesee. Had to chandge planes twice. I find long car rides unpleasant too. 5 hours to Edmonton was too much for me.
deleted_user
deleted_user

Hi! Yes, everyone is definitely different with travel but I can tell you my experience. I have Severe Chiari 1 with extended syrinx. I've had a lot of surgery, including ventricular shunt. I started flying long distances about 2 yrs post shunt op and have been fine! I was flying then between south Africa and England (about a 12hr flight). I find the worst part is not being able to take the weight off my neck bu over the years I have learnt what I call air flight survival. Most of my hand luggage consists of pillows and comfort items. I have a 4 wheel hand luggage suitcase that also makes a huge diff. I never lift my own case into the overhead compartments ( I hate asking for help but have learned the hard way that it's best and most people are vey helpful).

I continue to do several long haul flights a year and often across time zones (my least favorite!). Hope this helps!

My attitude is just go for it! We have enough restrictions already without being able to travel. If your doc says its ok you should be fine.

Oh, I made he mistake of notifying the airline about my condition once - it turned out to be a big hassle. As I already knew I was ok to travel I haven't done that since but again, talk to your doctor.
deleted_user
deleted_user

Yes will be uncomfortable, bigger the plane the better (cabin pressure) and wear/use neck support. As always stay hydrated.
deleted_user
deleted_user

I fly long haul every year and am OK, I asked my NS about it when I was diagnosed last year and he said it was fine and wouldn't cause and problems. For me that seems to be true xx
deleted_user
deleted_user

I fly several times a year, one trip is 9 hours each way: the only problem I always feel is a weird sensation as the cabin pressure changes on take off and landing, but then its fine: and I agree: good neck support, and lots of water.( I had surgery 12 years ago and my headaches are much less than before when I had the typical exploding head feeling)
deleted_user
deleted_user

I am sure that you have already figured out the answer to your question as that was awhile ago but having a ton of experience flying for work, I thought I would chime in and tell you all my experience in case someone else asks the same question. I just talked with my doctor yesterday in fact and was advised that while I should not take trips to high altitudes (mountains, etc.) the flights are excluded because they are in a pressurized cabin. I never feel any different in flying and actually tend not to get the excruciating headache during the length of the flight only a slight uncomfortableness which could just be me in my own head. (FYI I have not had the decompression surgery yet)
rrodgers
rrodgers

I hope you enjoyed your trip and took many more. So many times, we hold back from enjoying life because of our condition. Sometimes we have to weight out the pleasure from the experience vs. a possible headache. God is good all of the time.
deleted_user
deleted_user

Flying has always been a huge pain in the head for me.....having to lug around the luggage even if it is on wheels puts a great pressure on my brain....sitting in the cramped seats....and if you drink alot of water which you need ...you end up fighting your way to the tiny bathroom that you can barely turn around in to try to pee.....and just the balance issues of trying to walk on the plane to the bathroom is a hassle....I have almost got badly injured because of losing my balance when getting up to pee on a plane.....then there is the long sitting in a cramped position.....but long distance drives are horrendous too....i end up having the shakes really bad after a long drive.....travel is just difficult if you have chiari.....I am sure each person has a different reaction....but this is mine....
deleted_user
deleted_user

Hi I was diagnosed in 2010 a couple of months earlier I had trekked to Everest base camp over 19000 feet. I don't feel as if the altitude was worse for me with chiari than any one else on the trip. I have learnt to travel with neck pillows, and yes even on trains I ask for help putting bags in overhead compartments I feel uneasy as to others I look fit .
deleted_user
deleted_user

one of the symptoms that stood out the most to my doctor when I was diagnosed with Chiari was my extreme head pain when flying. My head feels like it is going to explode. My advice would be to take some really strong pain killers with you just incase. I use co-dydramol and codine which can make you a little wobbly for a bit but they may be needed (trust me). You may also want to fly with someone or if flying alone just let the plane crew know that you might just need a hand to hold for a little while. But everyone is different and a few hours after landing it clears up for me.
annabellaestrada
annabellaestrada

Just landed back home from Arizona & was the worst plane ride. Had sharp pain in my ears shooting down the back of my head and neck. Couldn't see straight - got off the plane started to feel better. For me, any type of pressure is not good for my Chiari .
Tillie
Tillie

8 mm herniation. I have flown a lot without any symptoms. US to Middle East. I like to fly
through Europe to make shorter flights. I do wear my spongy cervical collar on the flights
and sleep like a baby off and on
Posts You May Be Interested In:
  • nana012

    I have cancer

    I had to have a lung biopsy, and I have cancer. A very rare form that doesn't have any standard treatment. There just isn't a lot of case history for this. It is epithelioid hemangio endothelioma. The cancer support group doesn't talk every day. I can understand why. I'm waiting for the oncologist to call back for an appointment, and will hear in the next few days. Who knew. Ha!
  • Urlacher

    Support from family

    7
    It's so hard dealing with pain especially when you don't get any support from the person who your supposed to be closest to. So hard when your trying to deal with pain and that person treats you worse than the pain. Having hard time understanding why. unless you are having a good Day you are treated like crap and they make you feel worthless.