September is Chiari awareness month. What is Chiari? Chiari is pronounced (Kee R Eee). Most people, including some doctors ask how it’s spelled or how to pronounce it. I was told I had Chiari Malformation 1 after having a CT Scan and an MRI. The only reason I had these tests is because I have had migraines for over twenty years and nothing would help get rid of them. I also had severe neck pain. Both are symptoms of Chiari.
Other symptoms include: Headaches, dizziness, difficulty sleeping, weakness in arms/hands, neck pain, numbness in arms/hands, fatigue, nausea, shortness of breath, blurred vision, ringing in ears, difficulty swallowing, leg weakness. Abdominal pain, arm pain, balance problems, body weakness, chest pain, depression, facial numbness, hoarse voice, leg/foot numbness, memory problems, slurred speech (brain fog). Fewer than 20% of individuals who have chiari may experience abnormal gag reflex, sleep apnea, blackouts, earaches, nose bleeds, heart palpitations, and vomiting.
I have almost all of these symptoms. No blackouts, thankfully.
Chiari Malformation has 5 types. I have #2. Chiari is a serious Neurological condition where the back of the brain (cerebellum) herniates (drops) into the spinal canal, compressing the nerves and brain stem. The parts that drop into the spinal cord are called tonsils. Chiari affects 1 in a 1000 people, you can be born with it, or acquire it through a serious head trauma. There is no cure for Chiari! We can have brain surgeries, which will only help relieve some of the symptoms, or slow them down. Worse case scenario, if left untreated, it is possible to become paralyzed due to damage to nerves, discs and brainstem.
When I was first diagnosed, my tonsils measured 5mm. I had a lot of symptoms and was referred to a Neurosurgeon in Kitchener. Then I was put on a waitlist for decompression surgery. I then had another MRI and my tonsils were 12mm. I experienced many symptoms and tried a lot of different medications. I finally got my surgery date; I only waited 2 months since I first saw the Neurosurgeon. However covid decided to come along and shut the world down.
Decompression surgery is where the back of the head is opened up and my C1 and part of my skull will be shaved down. This will make more room for my brain.
The decompression surgery isn't always successful. I had another MRI in May of this year which showed that my tonsil are now 22mm. These measurements don’t seem to huge, but it is when it’s in your head, there isn’t much room! I’m currently on another waitlist for brain surgery in Hamilton. This surgeon is the best of the best They will go in an open my dura, cauterize my tonsils and then patch the dura using my own skin.
Until then, I take medical marijuana, Tylenol 4's and morphine to ease the pain. I take it easy, and don't push myself. I am praying September is the month I get the surgery.
