Arnold Chiari Malformation

By Lotte Van den Broeck,  Belgium

Aside from your heart to love and your lungs to breath, your brain is the most important thing your body needs to survive. Unfortunately, not every part that works well in every body. My mum always told me for every problem there is a solution, but it looks like there wasn’t one for Arnold Chiari Malformation, a brain disease where just a little is known.

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The reason why I chose this topic is because I have suffered a long time from Arnold Chiari Malformation. The hardest thing to deal with was the unknown. For six years we passed so many doctors and professors, but there was no one who knew why I had all the symptoms like: headaches, vision problems, muscles weakness, dizziness and even sometimes paralysis in my arms or legs, but we kept searching and with success. Three years ago we were contacted by a professor for disease of the metabolism system. It was just a coincidence that he just made a paper about this Arnold Chiari. He just described all my feelings, without I telling him anything about it. He just knew that I searched for so long for a reason for my headaches and my dizziness. I had been examined by so many different neurosurgeons and there was no one who could accurately diagnose my condition.

These malformations are usually caused by structural defects in the brain and spinal cord. When you suffer from Arnold Chiari Malformation, you don’t have space enough in the brain where the cerebrospinal fluid can pass.

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If this cerebrospinal fluid can’t pass, it will probably cause problems while the fluid will gather and press on the nerves. Behind the cerebellum all the important nerves that go to your back come together, so if there is too much pressure on that specific part of the brain, it can cause not only headaches, but even paralysis.

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What to do about it? Because there are many types of Arnold Chiari malformation, not every treatment is the same. Sometimes it can happen that you don’t have any symptoms at all. So why would you do something about it? In this situation, your doctor will just recommend you have regular examinations or MRIs. If you only have the primary symptoms like pain, your doctor will probably give you some pain medication. But when you have some more symptoms in addition to headaches, only a surgery will be sufficient, like it was in my case. It is all about decompression. What they will do is remove small selections of the bone.  This reduces the pressure on your cerebellum and spinal cord and the cerebrospinal fluid will flow again easily. There will be no more pressure on the nerves which lay behind the brain.

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Do you know the metaphor “That’s the thing about pain, it demands to be felt”? Well I totally agree with it, BUT maybe you can turn a deaf ear to your pain which cries too loudly for your attention. That’s what I’m going to do in the future. Most of the symptoms are resolved by the surgery, but sometimes the awful headaches are there again… As long as it is just headaches I can handle it. Life continues and I’m so happy with my life now. I’m so thankful to professor Van Calenbergh that he would take the risk to treat me.

In the future, I want to motivate everyone who suffers from pain. It is absolutely not true  that there is nothing to do to reduce the pain. Continiue believing in a solution or treatment. I’m sure there is one. It doesn’t matter what your doctor tells you. Just believe!

Explanations:
– Cerebellum, it’s the part of the brain that controls balance.
– Spinal cord, it’s a long, thin, tubular bundle of nervous tissue. The brain and spinal cord together make up the central nervous system.
– Cerebrospinal fluid, it’s the fluid that surrounds and protects the brain and spinal cord.
– Foramen magnum, it’s a large oval opening in the bone of the skull.

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