About Us 



(a current picture of me)



    Hi there! As I mentioned on the home page, my name is Mace'. Here is a little bit about me and part of my Chiari story.

             I usually spell it Macie because it's much easier for people to try and pronounce. I grew up in a small town in South Jersey and I wouldn't trade my life for anyones in the world. Writing is my absolute passion, although; I also have a love for photography.  Music has helped me tremendously in my lowest moments. I have Demi Lovato and her music to thank for pulling me out of some pretty dark times. I have one best friend that I don't know what I'd do without , concidering she stook with me the whole time I was sick. If you're reading this Mackenzie, I love ya girl. I also have met a pretty good amount of life-long friends during my journey.

     Okay enough of the little things and on to my story. I went through nearly 3 years of suffering from Chiari's symtoms. I felt like I was near death, but every doctor I went to told me the same old thing every single time: " Are you an attention seeking child?" "I don't see anything wrong with you, it's all in your head." "You have conversion disorder, your symptoms are from stress."  Eventually, they drove me insane and I almost started to believe them, believe that I was crazy. But the more time passed, the more symptoms I was experiencing, and the worse my they were getting. I was experiencing blak outs, severe chest pain, numbness in my arms and legs, feeling sick to my stomach, joint pain, migranes & mayjor headaches, seizure-like activity, blue lips; hands; and feet, blurred vision, double vision, severe stomach pain, dizziness, extremely low temperature, high blood pressure, low blood pressure, severely dehydrated; I mean my list could go on forever. Eventually, and thankfully, my mother had done research night after night after night, and came across a website for The Chiari Institute in New York. She then sent all of my information to their offices but it wasn't fast enough. My symptoms had gotten worse and I was going on day 3 of around the clock seizures and I basically told my parents to let me go. My mother wouldn't have it so she called the Institute's emergancy number where a secretary tranferred the call to the surgeon's personal phone number. He told us we needed to get to the LIJ Hospital as fast as we could and that a room in the ER would be saved for me, therefore; we packed up our bags and headed up there. Once there, my neuro surgeon told me I had to have emergancy brain surgery (Decompression of the Brain). God I was scared, but I conqured my fear and went through with it. Actually, I beat the hospital records. I was walking within 24 hours and discharged within 4 days! Sadly after a great 2 weeks, I was slowly getting worse, and some of my symptoms were comming back. So, my surgeon ordered some MRI's and found that my Odontoid bone (the bone that holds your head up), was bent and pushing on my spinal cord (this is very common in people who have Chiari), and that I would need another surgery! So I underwent the 2nd surgery (Fusion Surgery) because if I was to trust any doctor, it would be him. After that surgery I felt a little better, which is normal. I wasn't expected to be 100%  better so soon. I was discharged a little over a week later. This surgery takes a little longer to recover, and takes some physical therapy to get motion back. I am highly thankful that my mother had found The Chiari Institute, for the wonderful job my surgeon did, and for all of the people who supported me during my surgeries when others didn't. I cannot thank her enough, or ever repay her. She says I saved her life, but I say she saved mine. She was the ONLY one who truly belived in me throughout my whole journey! My mother is one hell of a person and without her, I would not be creating this website today. Slowly, but surely I'm getting better day by day.


I created this website because I feel that NOBODY should have to go through, or suffer as much as I did. I would not wish that on my worst enemy. Screwed On Tight was made so that no one has to suffer the agony that Chiari Malformation can bring ever again. This site will hopefully soon not only be a support group/site, it will be a charity also. Slowly, as the Chiarian Family comes together, and unites, we will not only conquer Chiari, we will conquer everything!




This picture was taken only a few days after being discarged from my 2nd surgery!