I cried for months. I developed a panic disorder. My anxiety got so bad that my family begged my doctor to give me something to calm me down, at least for a little while. I was a mess. I thought it was an immediate death sentence. Then I found the Alliance to Cure Cavernous Malformations and am so thankful I did! Finding others like me makes this very rare disease a little less scary.
I got a second opinion at Barrow Institute, thanks to the Alliance. Barrows recommend surgery asap. I ultimately decided to wait, mostly due to me being scared and having limited resources, and not having someone to take care of me after surgery. To this day, I’m not sure I made the right choice. It was not an easy decision.
Things started looking up, and I landed my dream job! I got to work with gemstones(my favorite things), celebrities, and people that appreciated my knowledge and kindness. I felt so proud, and for once, I truly LOVED MY JOB! But then, seven months after my first confirmed bleed, I had another. This time I had stroke-like symptoms. I got horrible neck pain, migraines and suddenly had trouble communicating. I couldn’t hear my customers on the phone, and I forgot how to write, do my job, and talk. My words came out garbled. Then came the visual symptoms.
I developed Visual Snow Syndrome. It’s where you have constant static like an old TV over your vision ALL the time. It causes severe light sensitivity, trailing, after images, double vision, floaters, and pulsatile Tinnitus. I also developed Alice in Wonderland syndrome, which can be just as scary as it sounds. It’s where things get bigger and smaller, and for me, time slows down. At first, the doctors thought I might have a mental health problem. But then finally diagnosed it as a neurological problem and started trying to treat it as such. Due to all of these symptoms, I lost the job I loved so much.
Only recently, after a little over two years, a new doctor did some tests and told me I was suffering from a traumatic brain injury, likely from the amount of blood in my spinal cord. He did some tests on my eyes that somehow confirmed it. So now I’m finally getting some therapy to help with brain problems. I’m also trying to get visual therapy and a hearing aid for my newly diagnosed auditory processing disorder that suddenly appeared after my second bleed. I am still very weak on my left side but able to move it some. I’m just about to start physical therapy on my shoulder(finally! So, for now, I try to work on the things I CAN change like my diet, exercise, TBI therapy, and physical therapy. I try to stay positive, but that’s easier said than done. I work on it every day. It helps keep me in a better state of mind.