My Nonprofit Reviews

This is my story! 💜🧠
In March of 2019, I found out I had Chiari Malformation 1 and Syringomeylia. I didn't think of myself as sick or that I have an illness. There’s still somewhat of a disbelief when I looked in the mirror and can’t see anything externally wrong, but I felt parts of my body tingling and my head throbbing like I got hit by a semi-truck. I have taught myself to go about my day as if nothing is wrong, you would never know I was having a massive migraine or that I was battling extreme nausea.
I was diagnosed with this chronic illness out of the blue at the age of 23. I have been experiencing migraines for what has felt like forever, with no relief. I tried over the counter medicine and even prescription from my neurologist, nothing was working. This led my neurologist to order a CT scan, which led to an MRI and words I’d never heard before in my life: Chiari Malformation, Type 1.
I was referred to a neurosurgeon in Morgantown May 2019. He pretty much told me if I could have a child naturally (I had my first son in 2014) then I was fine to live my life. I was very discouraged after that appointment. I just put my diagnosis on the back burner and went on with my life.
I attended my first Walk in 2019 and loved the experience. It was nice to meet people that knew how I felt and hear there stories.
I had my second son in July of 2021. My symptoms continued to get worse. I went back to the neurologist, which at this time was a new Dr. (Mine retired) She tried multiple medications and injections to see if they would help. Nothing worked, so she finally referred me to a different neurosurgeon.
When I went to my first visit, he told me right away that I should have had Decompression Surgery when I found out I had Chiari and a Syrinx in 2019. That news shocked me...after the shock sunk in, we went on to schedule my surgery. I had Decompression surgery December 9th 2021. My recovery was rough but I had a wonderful support system that I thank God for everyday. I attended physical and occupational therapy after surgery. To this day I still experience migraines and nausea. Not as often as before surgery but they seem to be worse when it does happen. I still get tingling, especially in my left shoulder and my hands shake. But I will continue to fight this battle and raise awareness for Chiari Malformation. I don't know where I would be today with out this Foundation and all the information it provides.
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