What is Chiari?

Do you know how many times I have heard you don't look sick?!

I want to come back at them and say well you don't look stupid but here we are! I do understand the looks I get when I use a power buggy at the stores and they are right from the out side I look like a normal 40(something) woman but on the inside I'm falling apart. I make jokes about my condition sometimes to make others feel better about what I just told them and other times for me. When you have a condition that even most medical professionals haven't heard of how do I expect the public to know so that is what I'm going to tell you about. I have Chiari Malformation Type 1. What in the "beep" is that was my question well....

The medical definition is according to https://www.ninds.nih.gov/

(national institute of neurological disorders and strokes)

Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM). Chiari malformations may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal. This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)—the clear liquid that surrounds and cushions the brain and spinal cord. The CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain.

What do I call it? My personal hell. The best way I have heard it described is that my skull was not formed right and part of my brain is falling out into my spinal canal.

Yep that's right I'm literally losing my mind. Lol (sorry bad Chiari joke)

So I guess your wondering how I found out about this. A few years ago my what I was told my whole life was "migraines" where becoming more frequent so the Dr I had asked me why I got them.. I was never told why never had any tests done to see why was just told they where migraines. She decided she wanted know why and sent me for a MRI of my brain. Surprisingly it showed I had one, but it also showed a 5mm herniation of my cerebellum. Finally I knew why I got the headaches and it answered so many other questions as well. After reading the list of general symptoms I understood for the first time I was not crazy nor was it all in my head. ( literally it is falling out)!!

Below is the list of symptoms they call typical:

Headache is the hallmark sign of Chiari malformation, especially after sudden coughing, sneezing, or straining. Other symptoms may vary among individuals and may include:

• neck pain
• hearing or balance problems
• muscle weakness or numbness
• dizziness
• difficulty swallowing or speaking
• vomiting
• ringing or buzzing in the ears (tinnitus)
• curvature of the spine (scoliosis)
• insomnia
• depression
• problems with hand coordination and fine motor skills.

every person with Chiari is different some people can go thru life and not even know they have it and have little if any symptoms. Then there are those who have a relatively small defect and have a tone of symptoms.

The other challenge we face is to find a Dr (neurologist) who knows how to treat it.

You notice I said treat and not cure? That's because there is no cure currently. They have a surgery call a decompression where they go in and remove part of your skull and leave it out so your brain has more room. As you can probably guess there are a lot of complications that can happen and there is no guarantee that it will help.

My goal in writing this us that the more people who are aware of this Disorder the better. I hope you learned a little something and feel free to ask me any questions.

Please excuse any Grammer mistakes as I did this all on my phone.