September is Chiari Awareness Month
Let's talk about what Chiari Malformation is and why I tell everyone I can all about it.
Chiari awareness month is super important. We have to have more visibility to find better treatment and one day, even find a cure.
What the heck is Chiari Malformation?!
“Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but increased use of imaging tests has led to more frequent diagnoses."
This is what the Mayo Clinic uses for their definition. You can go to five different websites and get five slightly different definitions. The main theme in all of them is that your brain falls out of your skull due to a malformation and it spills down into to your spinal cord and really messes things up. Thats the easiest way to explain it.
Whoa that sounds crazy. Does it effect you a lot? Is it really serious?
Yes. For me and my experience with Chiari it hurts a lot. Like a shit ton. I'm not going to go into too much of my life with Chiari in this post, but a little later I will highlight some of the common symptoms for people with Chiari. The part of the brain that ends up being affected due to the malformation is called your Cerebellum, and that little bugger does A LOT. My cerebellar tonsils are what was pushed out of my skull and into my spinal cord. Here is what is said on why that is so dangerous, making Chiari something that we need to find better treatment for and answers:
“Elongation of the cerebellar tonsils can, due to pressure, lead to this portion of the cerebellum to slip or be pushed through the foramen magnum of the skull resulting in tonsillar herniation. This is a life-threatening condition as it causes increased pressure on the medulla oblongata which contains respiratory and cardiac control centres.”
THAT! That right there is why I will tell everyone I freaking can all about Chiari, because the more people know this name and talk about it, the more eyes we will have on it and the more funding hopefully we can get! Ok Lacey hold on we will get to that in a minute. Let's get back to the common symptoms:
This is just a small set of symptoms. I happen to have them ALL, and more.
I'm not sure if you've noticed a pattern in all these symptoms listed....they are all invisible. Meaning you can't just look at someone and know that they are walking with awful pain, or have issues with swallowing leading to coughing fits that end up with vomiting daily. Or you can't tell that under that smile their ears wont stop ringing and the lights are far too bright for them and they know they can only spend an hour or so at coffee with you before a splitting headache sets in. Part of what makes Chiari awareness so important (besides that whole you can/many have died from this stuff) is that it's invisible. It's easy to forget or think; "well they don't look sick so it must not be that bad." We shouldn't have to prove to anyone especially not doctors how much we need help. The truth is right now, most people with Chiari have a hell of a time getting a doctor to believe them LET ALONE get properly diagnosed.
There. Is. No. Cure.
Yup. you read that right. (even though there are surgeries like the many different types of Chiari Decompression surgery) I myself have had one decompression surgery in 2012. That is NOT A CURE. There is no cure for this. Decompression surgery is really a bandaid, and to be honest there is no telling if you will even come out "better". (meaning: less symptoms) In my experience and others I know with Chiari, it's more like playing poker; you always have to have five cards. You might walk into surgery with really really bad headaches and after surgery you no longer have the headaches as ofter or as bad but now you have vestibular issues and tend to walk into walls. See... you still end up with five cards. (though truly, my Chiari-related symptom list counts up to the 40's somewhere...)
Chiari effects 1 in 1,000, and now they think that number is higher.
The only thing we have right now is awareness. Thats it. All we can do is tell and teach everyone we can about this condition and the way it needs to be looked at. We need doctor education! I can't tell you how many doctors I have had to educate about what Chiari is and how it effects the body.
How can I help?
Great question I'm so glad you asked!
1) Google Chiari Malformation. That helps a ton. Showing that people are looking for it is huge.
2) Here is a link to my favorite Chiari non profit, they spread a message of truth and hope and they work hard on the education of the medical field. (I really really love the Bobby Jones Chiari Syringomyeila Foundation)
3) If you can or have it on your heart to give, I would direct you money to the Bobby Jones Foundation.
Im sorry this doesn't have a happy ending but that just it. However, we can still give it one! It might not be in my lifetime but that doesn't mean I'm not going to fight like hell to find a happy ending for all who currently, or will walk this life living with Chiari Malformation in the future.
Thank you for reading this.
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