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September is Chiari Malformation Awareness Month, although there’s a good chance you didn’t know that. Even though thousands of people are afflicted with this condition, it’s still relatively unknown among the general public. In fact, many doctors are unaware of its existence.
In 2014, my wife was diagnosed with Chiari malformation. While I could write a whole book about her surgeries, recoveries, doctors visits, and reoccurring symptoms, we’ll go over how she, along with other Chiari patients, have managed traveling and exploring our world.
Even if you don’t know someone who has Chiari, chances are you may know someone who has symptoms caused by a brain or skull condition.
What is Chiari Malformation?
Chiari Malformation, officially called Arnold Chiari malformation, is a condition in which the back of the skull is malformed, which causes the cerebellum to protrude into the spinal cavity.
I know that sounds technical and “icky,” but I’d like you to know what we’re dealing with.
Those who have Chiari may have splitting headaches, feel dizzy, have neck and back problems, and have lost the ability to regulate their own body temperature, among many other symptoms. While the severity of these symptoms vary according to each person, it’s important to note what can be done to make Chiari patients feel more comfortable while traveling, whether they’re on vacation or simply going to the nearest specialist’s office, which could be hundreds of miles away.
What do we need to keep in mind when traveling with our Chiari loved ones? My wife, along with other Chiari patients, have helped by giving me ideas for the following points.
1. Can they fly with Chiari?
This past summer, my wife and I went to Wyoming. From where we live, that required taking a plane. It was the first time she was going on a plane since her surgeries.
We didn’t know what to expect. Would she be able to handle the changes in air pressure? Would she get nausea? How about a splitting headache? I wondered to myself if once we landed, we would have to make the decision to drive home after our vacation.
Lift off proved to be a bit difficult for her. She got dizzy and had to close her eyes and try to ground herself. The landing was equally challenging. While she wasn’t so uncomfortable that she’ll never fly again, other Chiari patients aren’t so lucky.
Cassie, who also has Chiari, chooses not to fly at all, as she’s afraid that the plane will have to make an emergency landing for her. Another Chiari patient, who will remain anonymous, has absolutely no problem flying.
Jody has a great tip: wear earbuds. She finds that wearing earbuds helps lower pain caused by the changing pressure during take-off and landing.
As you can see, each person’s case is different.
2. Will Chiari Malformation affect a road trip?
Like flying, Chiari patients have different tolerances for car rides. My wife can handle being in a car for long periods of time, but her back will get stiff. Another Chiari patient, who’ll remain anonymous, has a similar problem: she can’t sit for very long, and has to change positions often.
Melinda has difficulty being in a car for a long time. She’ll feel like she’s on a rollercoaster, and her perception of the car’s speed is distorted. This can be a scary feeling, as she’s afraid that she’s going to crash into the vehicle in front of her. Cars around her seem as if they’re going faster than they are. Jody also has trouble in the car. It’s difficult for her to be a passenger, as she gets nauseous. She finds it easier to be the driver than the passenger, but driving for long periods of time can be challenging.
Cassie needs a long time to recover from a road trip. For her, sitting still for long periods of time is painful. She can be fine one minute and be suffering the next.
3. Are they covered by health insurance at your destination?
Two years ago, my wife and I went to Quebec. While we were in the planning stages of the trip, the thought dawned on me: What if she needed medical help while we were out of the country?
At my former job, I had a family policy that didn’t cover any expenses out of the country. So, I investigated to see if it was the same case with my newer coverage. I was pleasantly surprised to see that they did have some type of coverage at select hospitals in Quebec.
Before leaving, we did three things: 1. We wrote down the addresses of these hospitals. 2. We looked at a map to know exactly where they were in relation to where we were staying. 3. We hoped and prayed we wouldn’t have to use this benefit while away. Thankfully, we didn’t.
When traveling with someone who has Chiari, it’s important to make sure that they are covered by health insurance at your destination. Policy benefits differ, so make sure you go over the coverage, and don’t be afraid to contact the insurance company if you have questions.
If they aren’t covered, it would be worth it to look into traveler’s insurance. While we never want to use it, having it could help in an emergency.
4. Are they comfortable?
Chiari patients usually have neck pain. When we travel, my wife brings a neck pillow, which helps support her neck muscles.
Karrie brings a chiropractic pillow to sleep with, along with any medication she needs for headaches and muscle fatigue.
Also, some Chiari patients may have lost their abilities to self-regulate their body temperature. My wife will get unusually cold in the winter, then unusually warm in the summer. Her body just can’t balance the heat and cold the way others can. I have to keep this in mind when we’re out walking. What’s warm to me is excruciatingly hot for her.
Conclusion
How far and where a Chiari patient can travel has to be taken on a case-by-case basis. However, with some planning and foresight, we can make our Chiari loved ones feel more comfortable while on the go. We, being their spouses, children, parents, friends, and other loved ones, need to stay mindful of their condition and symptoms so that they can enjoy the trip as much as possible.
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Great post
Thank you!
Can’t tell you how much your story helped me. I too, suffer from chiari type 1. I have trouble with car rides. I get nauseous and dizzy. Especially dizzy when I get out of the car. This article is so considerate, and I appreciate that you understand the condition.
Thank you
I’m so glad that you found this helpful! My wife was diagnosed with Chiari a few years ago. She had two decompression surgeries. We’ve learned so much about it. I consider my wife to be an expert. (If you live in the RI area, we know a good doctor, and a doctor to avoid, just send me an email.) Many people have never heard of Chiari, but know that you’re not alone.
Wow thats truly a blessing if you know a great specialist. I do not reside in RI. But I will leave you my email because I am willing to travel. (The best way I can) [email protected]
You can email me at anytime. Thank u so much!
So sorry it took a while to respond. I’ll send you an email. Look out for an email from [email protected].
What a well informed article.
Thank you. I hope it helps spread awareness about Chiari.
Thanks for reading. I’m hoping to spread a bit of awareness of Chiari. It’s great that your son was able to get to Nicaragua. Brave too, considering the different medical facilities they may have there. Good luck to you as well.
I’ve often wondered if I could tolerate a plane ✈️. I’m surprised that I’m able to handle the water and my kayak like I do. Thanks for writing this post.?
My wife is able to handle it, but she gets dizzy during takeoff and landing. We were worried that she wasn’t going to be able to make our last trip. Unfortunately, there was only one way to know for sure. Thanks for reading.
Thanks for helping to spread awareness this month! Traveling is always difficult.
Wow, it was like reading about myself! I am terrified of heights anyway but very scared to fly. I have flown 3 times in my life and it terrified me. My son who also has chiari has flown to Nicaragua twice. This stressed me out because if something happened I was not sure I could get to him. Last year both my children went. I just prayed and trusted God. My son though when he came back, he told me he didn’t think I would be able to fly due to the severe headache he got from it. Of course I am older by 19 years and he knows that it will probably get worse for him as well. But he didn’t think I would be able to fly well especially when you add the stress factor in.
I live with severe headaches everyday. I do not travel well. I have to get out every so often because of back pain. My neck also hurts and get hurts just looking to see if it is clear to pull out onto the road. In addition to the normal back and neck pain, I have arthritis in both areas and my neck is “bone on bone” according to the doctor.
Many prayers going out to you.
Thanks for reading. I’m hoping to spread a bit of awareness of Chiari. It’s great that your son was able to get to Nicaragua. Brave too, considering the different medical facilities they may have there. Good luck to you as well.
This was a very informative article for me. I never realized all you and Chrissi had to plan way ahead to take a trip. You are a very caring, loving husband, and we are very lucky to have you in our family. Thank you for being there for my daughter!!!
Aww shucks! 🙂