It doesn’t look like much, but this little misalignment of the brain can be a real pain in the head. And ass. Let’s be frank.
September is Chiari Awareness month. So WTF is Chiari? Well, I’m about to tell you. I am currently being heavily affected by this condition, so I’ve set a little challenge to keep me strong, and share my journey. For the month of September, I’m going to share 30 ways Chiari has impacted my life.
Clinically, physically, emotionally, socially, and philosophically, living with a challenge like this has changed the very core of who I am, and I want to share the story. So let’s start at the beginning - what is Chiari Malformation?
The condition I have is a Chiari Malformation type 1. My cerebellum protrudes through my skull into my spinal canal by about 7mm. It’s very hard to get an accurate measure on an MRI.
It’s a rare condition (perhaps 1 in 1000) and although usually present at birth, can often be asymptomatic until later in life. Commonly, patients with this condition are females in their 30s.
Headaches are the main symptom of Chiari, but some people never have symptoms. For others, it comes and goes, and others experience some or all of the following in varying degrees:
- dizziness and fainting
- weakness in muscles
- neck and shoulder pain
- blurred vision
- tingling and numbness in limbs
- sleep issues
The brain creates half a litre of cerebral spinal fluid (CSF) every day, and that moves around within the dura (brain covering) and through the spinal canal. With chiari, the space where this fluid can go is restricted, and it’s thought that the pressure of the fluid trying to get through can create a range of symptoms. Including a syrinx. This is a fluid filled cyst within the spinal column. It can grow and create pressure lower down the back too.
Chiari Malformation isn’t life threatening, generally speaking. Its symptoms can cross over into a range of other illnesses and it can be hard to diagnose.
The only current treatments for Chiari are pain management, and surgery. The decompression surgery consists of removing a piece of skull, and opening up the dura. A patch is sewn into the dura to allow more space for the CSF fluid to flow, and reduce crowding of brain, nerves, dura, spine at the base of the skull.
People with Chiari find it hard to get treatment, what might reduce symptoms and suffering for one person, may not work for another. And there is still a lot of mystery around correlating symptoms to the condition itself. Anecdotally someone might have relief after the decompression, but there doesn’t seem to be strong evidence that they’re connected. The team treating me have been extremely conservative about surgery, but we are finally at that point now. I have tried everything under the sun, and if a positive attitude could change the shape of my brain, it definitely would have done so by now.
I have built a resilience that could never be taught, only experienced, and I want to help others maintain hope. I am not the only one fighting an invisible and mysterious condition. 1 in 5 Australians suffer a disability, and that’s just what’s diagnosed and statistically reported. There are many, many people living challenged in a world that is designed for the fit and healthy, and where your value is measured in productivity.
The goal with this series of 30 blogs is to open up the conversation on invisible illness, and share my story. Please email me if you have any questions or your own story to share! I’d love to hear from you.
HERE ARE MY RESOURCES: