I am 21 years old and a college student just trying to survive my everyday life with Chiari Malformation, Ehlers Danlos Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder, POTS, Tethered Cord, Gastroparesis, and Interstitial Cystitis.
Saturday, April 2, 2011
My Story in a Nutshell!
Since the fifth grade I went misdiagnosed. I was in and out of MRI machines CAT scans. You name it I had it done to me! I was a sophomore in high school before correctly diagnosed with a Chiari Malformation (I am now 17 and a junior in high school). Whats That? It is a congenital birth defect where your brain has fallen down into your spinal column causing pressure on your brain and skull. The skull on the left is what your brain is suppose to look like. The brain on the right is what mine looks like.My symptoms were severe chronic headaches, back pain, dumbness, weakness, fatigue, memory loss, loss of words, and balance. When I found out that I had a Chiari Malformation, 3 things crossed my mind; 1. How do you even say that! 2. Yes! They know what is wrong, no more fear of the unknown or tests. 3. Why me? Well more and more doctor visits went by and so much medication before deciding what to do. I had decompression surgery on August 30th 2010. I was pain free for 6 months until I started slowly falling back down the hill again. I am now have duraplasty surgery on May 6th 2011. I am hoping for permanent relief this time. Prayers and thoughts are greatly appreciated! <3