Chiari occurs when the skull is too small to accommodate the big brain that is growing inside of it. This condition is named after Hans Chiari, not Arnold Chiari as is often touted in poorly researched articles on the topic. Hans was an doctor many years ago who looked at the brains of people postmortem who had spinal issues and other various ailments. This was years before MRI’s and anyone could look at what was going on inside the brain.
Arnold Chiari would later make it famous (in certain circles, I still have to spell Chiari out to most medical professionals I come across, it is pronounced KEE-ARE-EE). Its the typical Tesla/Edison story where one person got the credit and the other one is largely ignored.
Chiari is not a malformation at all. Not of the brain anyway, its more like a space issue or your pants being too tight. Eventually the brain keeps growing around that little opening under the skull and tissue protrudes and gets strangled and herniated.
There are many types of Chiari, 0, .5, 1, 2, 3 etc. Chiari is not rare, you hear that, but it is not rare. Most people just have no idea they have Chiari as it can be and mostly is asymptomatic. Olive has classic type 1. Which is largely defined by having a herniation larger than 5mm (an arbitrary number that is called “clinically significant” by a bunch of people who don’t have Chiari and largely ignore the symptom reporting of their patients.)
This herniation forces the brain down the spinal column and restricts the free flow of Cerebral Spinal Fluid (CSf) this can cause a back up of fluid, pressure, high inter-cranial blood pressure and hydrocephalus. When CSF is restricted, it can cause a Syrinx in your spinal column which is a pooling of fluid. This is basically a blister. The problem with having a blister in your spinal column is that it slowly presses like a big thumb into your spinal column and you basically start to lose control over hands, legs, bowel movements, feeling, etc. If it isn’t caught and corrected soon enough, it isn’t correctable and you end out paralyzes and too much nerve damage is done.
There are other problems when the brain stem is is squeezed tightly, including choking, gagging and spontaneous death due to sleep apnea. So a Chiari child can go to sleep and simply not wake up. Which suddenly makes me wonder if children with SIDS are monitored for Chiari or have their parents screened for Chiari. I was always a psycho about the kids breathing and sleeping well, it turns out for good reason.
Anyway, in June of 2016 we were symptomatic and had we discovered Olive has an 8mm herniation. We did another MRI in June of 2018 and got similar results. By Sept. 10, 2018 our new MRI showed that the herniation is at 11.9mm and her symptoms have become more aggressive, more significant and more frequent. There is no cure for Chiari, the surgery is only a treatment and many people may have to undergo multiple surgeries. Cross your fingers that we only need to have one.
For more information about Chiari, please visit:
The Chiari and Syringomyelia Foundation at https://csfinfo.org/
or Conquer Chiari at https://www.conquerchiari.org/index.html