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Hi my name is Seana Malovic. And I am fundraising for Brain Surgery, and everything that comes with it, travel expenses, medical expenses, and time out of work for several months. I’m barely able to make it to work at all anymore. I'm 30 yrs. old, I bartend at a local Restaurant here in Az, which I've been employed with since 2012. And, I am having brain surgery in Little Rock, Arkansas. But, I’m sure you're reading this because you want to know more. So, Lets rewind a little bit... I've had a basically normal life, aside from being in and out of doctors' offices since a young age. I was always referred to as the "hypochondriac" of the family. But for me, I just knew I didn't feel "right”. Aside from that, my conditions hadn't yet been identified and weren't affecting me to the degree they have progressed too. I still was living, enjoyed being outdoors, hanging with family and friends, being active, and was a total busy body and hard worker. I had put a down payment for trade school. I was making moves for my future. I would have never imagined that soon everything I had in life, including my happiness, my health and my will to live would be ripped quickly from me basically overnight. Leaving me feeling like I no longer could be of any purpose. Soon, ALL my free time, would be searching for answers. My body was just deteriorating, and the pain was keeping me from living, I was no longer living life, just living to survive. I had dreams, as we all do. About six years ago, I started having headaches on and off again and neck pain, getting stronger each year, up to 3 years ago becoming constant and unbearable. I woke up one morning with the most blistering head pain I have ever experienced which lasted an entire week. Went away and returned one month later, and never left, which stayed with me 24 hrs of everyday, Along with constant severe neck pain, soon my hips and knees, and basically all my joints began hurting. Some days I could barely hold my head up. Or get out of bed. I KNEW something wasn't right. Little did I know, I would soon go for an MRI where I would be diagnosed with a progressive brain condition called "Chiari Malformation" which is where the cerebellum (bottom part of the brain) descends into the spinal canal blocking Cerebral Spinal Fluid from flowing freely to the spine and putting pressure on my brainstem, brain, and spinal cord causing an array of other medical issues. I searched high and low for doctors who knew about my condition. I found many who didn't, some who did. I've traveled to 6 states and saw 12 different Neurosurgeons and tons of Neurologists. I explored and tried every procedure possible or recommended, invasive rounds of extremely painful injections, medications,and all with zero improvements. I've continued PT several times a week for years which has kept me going. And, In the mists of this storm, I felt I was dying fighting for my life. Working for only the purpose of the next step to health. Shortly after I was diagnosed, I was also diagnosed with another progressive incurable condition, “Hyper-mobile Ehlers Danlos Syndrome”, which is a "Connective Tissue Disorder". That often accompanies Chiari. Affecting collagen formation function. It affects virtually every organ system. Meaning the collagen in my body is faulty leaving me to be overly hyper mobile causing damage and instability and looseness in my joints as well as many other issues. Doctors and scientists are still trying to figure it all out. Little did i know, I would soon have to search high and low for doctors who even knew about my condition and everything that came along with them. The GASLIGHTING was unbelievable. I then joined online support groups, from there... "I found a whole world of people written off, who had the same conditions stuck at home in misery. Some for 30 years with no help, and 10+ surgeries later. Some had brain surgery, left off worse from underlying issues not addressed. This makes the seriousness of finding the right surgeon and the right treatments critical. Which left me worried as ever spiraling down a dark path that I would be that way too. There is no going back from that surgery, what's done is done. Many would ask why this is relevant and how others' experiences matter. To stop looking into it that much but, I just couldn't. We have doctors currently in Tucson alone who are taking on patients with our diagnoses and learning from us. It's important because all of these people are MY PEOPLE. They were my support and the ones who understood me when no one else could. They're the reason I found answers and the right doctors. So, this is a HUGE piece of my story. These are very complex conditions and very understudied by medical practices but becoming more and more common and not as rare as they once were thought to be. We need to share our stories for a shot at future generations of patients, doctors and health workers, so we can simply not suffer for so long before finding help. In this time of studying my brain condition, I found myself with so many other symptoms. I was no longer able to tolerate anything. I was becoming so ill with pain, along with dizziness, vertigo, extreme fatigue, feeling faint, blacking out, problems with blood pressure and increased pain. I found a doctor in Phoenix, who specialized in several conditions which were suspected and often accompany Chiari. Which was vital on my road, I was told none of my conditions are curable, however there is a surgery that can slow down the progression and help from this from manifesting into irreversible damage. Along with high hopes of lessening my increased issues I am having. I know what this can look like, but y'all I am so faithful. I have fought through darkest days and nights. I've told my family I thought it was just my time to go. I stopped wanting to fight at some points, and that was a very scary place to be. I prayed like never before, I have continued to push myself to my literal limits, work as much as physically possible to be able to pay heath insurance, traveling all over for procedures and doctors, medical bills, with the help of my husband. With that said, I am asking for help so I can can have a shot at be a better version of me. With your support, and hoping I do better than okay, I want to be able to give back to the community as well. Thank you all so much for taking the time to hear my story. I cannot thank you enough for the support I have gotten through this. And continue to. Thank you so much.
Fundraiser at Risky Business on 6686 East Sunrise Drive, Tucson Az. to follow on June 29th. @ 1-6pm
https://elhers-danlos.com
https://conquerchiari.com
https://chiaribridges.com
Fundraiser at Risky Business on 6686 East Sunrise Drive, Tucson Az. to follow on June 29th. @ 1-6pm
https://elhers-danlos.com
https://conquerchiari.com
https://chiaribridges.com