So, What’s This Brain Thing Again?

September is Chiari awareness month, and since I am keenly aware of Chiari, I thought I would take this time to make sure all of you are as well.
A Chiari malformation is where your cerebral tonsils are not tucked up in your head all nice and neat like, but actually down into your neck.
Here is a normal brain:

Here’s mine before surgery:

A couple things to note here, see how on the top pic, the cerebellum is round, looks like cauliflower? And then on mine, it’s more angular? Looks like a bent piece of orange. Also, in my pic, see how it’s pushing against my spinal column? This causes all sorts of problems.

The thing about Chiari is you have a ton of symptoms, which 1) you don’t really know are symptoms 2) could be so many other things &3) when you list all the symptoms together, you are then told you are crazy, a hypochondriac, looking for attention, etc so we usually don’t tell people what’s going on. Also, we’ve had this since birth, so some symptoms, we just don’t know any better.

Here is a list of symptoms from the National Institute of Neurological Disorders and Stroke:
“Individuals with CM may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some individuals, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Persons with a Type I CM may not have symptoms. Adolescents and adults who have CM but no symptoms initially may, later in life, develop signs of the disorder. Infants may have symptoms from any type of CM and may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight.”
I just thought I was clumsy and quirky. Turns out, even my bad handwriting can be blamed on this. Btw, I never had any problems gaining weight.

I came up with my own list of signs you might have Chiari:
-You have ever fallen UP stairs
-You have ever wanted to go up to a policeman and ask for a field sobriety test, just to see if you could pass
-You have had so many MRIs that you can’t walk by the fridge without it sticking to you.
-People see you walking at the fair and ask if you just got off the tilt-a-whirl
-You’ve ever been swimming in your own hallway
-The phrase “it’s like riding a bike” is infuriating to you, because you can’t ride one.
-Brain surgery sounds like a reasonable and exciting option

Now, I’ve said I have the luck of the draw about a few other things in life, there are a lot of things I’ve lucked into, or been at the right place at the right time for, but let me tell you. I have Spina Bifida and that is damn lucky. They didn’t know this until they got in there for my surgery, but they discovered my vertebrae don’t close. I truly believe this has saved me a lot of pain and medical issues. Had my vertebrae been closed, I could have had more pressure on my spinal cord, and I could be paralyzed, dead, or worse off than I am now.

I have a lot of friends who have it really rough. Some are very sick, some are on disability, and some have died. I prefer to look at the positive side, and try to focus on what I can do. I will never understand the mentality of people who get all bent out of shape and upset when someone thinks they don’t look sick. For some people being told they look healthy is a huge insult, and I don’t get it.

So how does someone “get” Chiari? The short answer is no one knows. Most of us are born with it, while a few get it from some sort of damage to the spinal column. There is a lot of evidence showing that it is hereditary which proves my theory that I was adopted, because no one in my family has it.

Chiari is treated, or maybe I should say managed with surgery. There is no cure, and the surgery is barbaric sounding but helpful. I am three years post op, and people don’t understand why I’m not cured. Smart people, people I’m close to even.

Maybe this will help…. Here is my brain now:

The dangly part is mostly gone, and my brain and spinal cord are now separated, but the cerebellum is still shaped the same as before. You can even see where my skull is gone now. Funny story, with my thyroid acting up, or not doing anything really, I went in to the ER one night. They did a CT scan on me, determined I was fine, and as I was leaving, the doc pulled me aside and asked if I’d ever seen a scan of my head. I said “yes, many times. Why is there something new there?” He said, “you HAVE to look at this” as he took me to a monitor to show me my brain. He pulled up an image and ran through several explaining to me “see, here’s your skull, there, there, and here, it’s ….. gone! It’s just GONE!!” I WISH I would have been thinking, I would have looked at him and asked “we’ll where did it go? Did you take it?” But I was tired, and just said “yeah I know, it does that”.
So in short, Chiari is not a vacation, it sucks and we try very hard to live a normal life. Some of us do pretty well, too. The hardest part is the lack of people (family, friends, and doctors) who are educated on this. We are labeled drama queens, hypochondriacs, or depressed, when in actuality, we are just tired of not being heard for what we are saying.

Now, hopefully more of y’all are aware of what a Chiari malformation is. If you want more info, go here http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm#240513087 and if you want to know what it’s like to stumble in our shoes, you can put your forehead on a baseball bat, run around in a circle 100 times, and then try to walk, work, cook dinner, etc.