Chiari Malformation and Me

 Chiari malformation-kee-AR-ee is a condition in which a part of the brain at the rear of the skull bulges through a normal opening (foramen magnum) in the skull where it joins the spinal canal. This puts pressure on parts of the brain and spinal cord. It can cause mild to severe symptoms. In most cases, the problem is present at birth (congenital).  

Chiari Malformation unlike Spina Bifida is an invisible condition. You cant see the brain fog or the pain or the fatigue. Therefor many with the condition are made to feel stupid or like they are faking their symptoms.
Let me assure you that this condition is very, very real!!

I know I have done a blog on this subject before but that was several years and a lot more education and experience ago. I have had Chiari Malformation for 20 some years. I had very mild symptoms until I had my lower back refused from Spina Bifida last year and then BAM! all of these symptoms came up and the ones I already had got a lot worse. My older blog was also more about facts that I knew at the time. This time I'm writing about my own personal experience with Chiari Malformation(For the remainder of the Blog I will just refer to it as Chiari.). What I go through,What it looks like FOR ME. I will attach some links to educate you more on the condition itself.

As I type I am month long Chiari "flair up" so please pardon me if my writing doesn't sound quite like I normally do.

First off lets talk brain fog and fatigue......Its probably the worst symptoms I battle with on a daily basis. Even as I type brain fog is making it difficult to remember half of what I want to say in this blog. I'm having to write notes and send messages to friends of things that pop into my head that I want to put in the blog. and fatigue well she's just a whole 'nother bear. Fatigue is making it hard to WANT to write so im doing little bits of it a day. I spend a lot of time in bed and when im up I try to pack as much in as possible but then im down again for another day or more.

Anyone that knows me knows my two favorite days of the week are Sunday and Thursday. Just to get ready on a Sunday is exhausting. Just pulling down what I want to wear and putting back what I dont need is exhausting. I have to go wherever I'm going early just to rest before "doing" anything. If I know I will have to actively participate in something ie.chior that I love so much. Ok now let's talk about random pain that you never know what will set it off. Anything and I mean ANYTHING can set it off. I can be fine and then BOOM!! A rageing headache from the weather or joint pain from weather or anxiety. Neck pain can come on from just lifting something wrong or sleeping wrong so can back pain and side line me for a week or more. Just being over stressed or doing too much can make my body ache. I have to plan EVERYTHING EVERYDAY. I have to have at least one day of bed rest in between days of any activity or I am out for several days in a row unable to do anything. Chiari malformation is no joke!! Its the most debilitating and life sucking condition I have ever had. Medscape-Chiari Malformation Chiari Malformation Mayo Clinic International Chiari Association