How I Explain Chiari Malformation

Before I get to today's post, I have been working on a redesign of my website the last few days that incorporates easier navigation, more pictures, and the color purple, for Chiari Malformation and migraine awareness.  While a lot of things are looking great, I'm still having some minor display issues that will be fixed over the next few days.  Thanks for your patience!

In October 2015, on Columbus Day weekend, an MRI scan confirmed a theory that doctors, my family, and I had for close to four years. I was diagnosed with Chiari Malformation. I started jumping up and down, super excited. My neurologist was smiling, thrilled that he was right about me having this. My mom was incredibly happy and could not stop smiling. These are highly atypical reactions to finding an abnormality in the brain, but we were so happy to finally have an answer as to why I had seemingly developed neurological issues out of the blue.

Chiari Malformation is a neurological condition that basically means that a person has too much brain to contain. Other simple explanations I use include that my brain is trying to escape, my brain fell out of my head, and my brain fell down. In medical terms, Chiari Malformation occurs when brain tissue expands into the spinal canal, due to a smaller skull. Functions controlled by the occipital lobe of the brain are affected, such as vision and balance. Chiari can be congenital, though symptoms can be developed later in life, and it might not show up on a MRI at first.

Symptoms can be very different, depending on the person. One of my friends is completely asymptomatic, and the doctors found the Chiari when they had a MRI for another reason. Another one of my friends lost their ability to walk due to their chronic pain and balance issues, and uses a wheelchair. For me, my Chiari Malformation causes chronic, constant pain, spasms, and chronic migraines, as well as major issues with my eyesight. I also have issues with balance- I walk differently than normal, and my running can be best described as trying to walk across ice.

One of the most common questions is if there is a cure. While symptoms can be managed, the main "cure" is brain surgery. At this time, I have been told I am not eligible to receive brain surgery (if you are a neurosurgeon who disagrees with this, please contact me!). Luckily, the condition is not life threatening, although the person may be prone to developing life threatening conditions such as a syrinx.

While it is an uncommon condition, there are about 1 in 1000 people with it. I have been amazed to meet people that have the same condition as I do, although none of them have had the same vision complications as me. There are some days when the pain is extremely bad, but for the most part I am able to function through it, though I do crash at the end of the day.

I am extremely lucky to have a name for my symptoms, and to have an amazing neurologist who knows a lot about the condition as well. After years of searching for a diagnosis, I am happy to say that I have Chiari Malformation.

 

Comments

Posted by Diane BraunerSep 05, 2017

Thank you for sharing about Chairi Malformation - this is a condition that often seems to take a long time to correctly diagnosis! After 25 years in the field, I have had three students - all in the past 5 years - who were diagnosed with Chairi Malformation. Two of these students went through years of migraines, fluctuating vision and numerous doctor appointments before being diagnosed. These two students were told by multiple doctors that their fluctuating vision was psychosomatic; and unfortunately, some educators who did not understand that vision can fluctuate, thought the student was 'faking' a vision loss. What a difference a good diagnosis and updated IEPs made for these students!  Thank you for bringing awareness to Chiari Malformation!

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