September is Chiari Awareness Month

September 14, 2017

September is Chiari awareness month. What is Chiari? Melanie Thomas from Saik’uz has been diagnosed with this health condition and is committed to educating as many people as possible about it. Here’s her story!

My name is Melanie Thomas, I am from Saik’uz First Nation. I’m going to write about the condition that I have been diagnosed with. My hopes are to educate as much people as possible, as September is Chiari Awareness Month.

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 had a headache for 2 weeks straight and nothing would help get rid of it. Headaches are one of the many symptoms.

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.

Chiari Malformation has 5 types. I have #1. 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 Kamloops. Then I was put on a waitlist for decompression surgery. I then had another MRI and my tonsils were between 6.5mm to 7mm. I experienced many symptoms and tried a lot of different medications. I finally got my surgery date; I only waited 7 months since I first saw the Neurosurgeon. I had decompression surgery, where the back of the head was opened up and my C1 and part of my skull was shaved down. This was to make more room for my brain. Two days later I had a fusion of my C5-C6 vertebrae as my discs were deteriorating. I was discharged the next day from the hospital.

The decompression surgery wasn’t successful. I had another MRI in June of this year which showed that my tonsil are now 10mm. 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 my 2^nd brain surgery. They will go in an open my dura, cauterize my tonsils and then patch the dura (synthetic or bovine).

I’m very thankful that I was diagnosed right away. Most times patients are misdiagnosed and/or treated for: migraines, fibromyalgia, chronic fatigue, lupus, MS, anxiety, depression and many other conditions.  Chiari Warriors (we don’t want to be called patients, with all that we go through) can’t make plans and live day by day. Barometric pressure (changes in weather) affect us and can cause serious pain. Altitude changes also affect us. The pain and symptoms vary day by day. A lot of Chiari Warriors have passed away due to complications in surgery, not being diagnosed right away, pass in their sleep (apnea), and some have taken their own lives, because of the pain and doctors not listening to them.

Support your Chiari Warriors by wearing Purple! The purple ribbon is for Chiari and the symbol is the butterfly. Some Chiarian’s are now using the giraffe as well, because of the neck. We Chiarians need to be careful with our heads and necks. No hyperextension, no g-force. Even house hold chores tire us out. The four words that have changed my life “You have Chiari Malformation” Here’s hoping for more research, and a possible cure!!

If you experience any of the Chiari symptoms, please see a doctor ASAP! Have Chiari ruled out. Please ask for a CT or MRI of the back of your head, neck and if you can… ask for a full spine one to rule out Syrinx (Syringomyelia) in the spine. Once you have Chiari, need to watch out for other things that can sometimes come with it. Examples: (POTS) Postural Orthostatic Tachycardia Syndrome, (EDS) Ehlers Danlos Syndrome, Tethered Cord, and more.

Thank you for taking the time to read this. Please keep us Chiarian’s in your prayers.

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