Better State of Mind

Jessica Lyons Shares her Spinal Cavernous Malformation Story
My cavernoma story starts with a car wreck. A lady was backing up, and she hit the front of my car. I tensed up as my car made contact with hers. After the accident, I immediately went to the emergency room. My head had flung forward when my car was hit, I had sharp pain in my neck, and they did an x-ray and said I had whiplash. For the next six months, I continued to have the same pain that felt like a bad pinched nerve in my neck. But it wasn’t getting better like the doctor had said it would.
Then one morning, I woke up unable to move my left arm. It hurt a little, but mostly I barely had any feeling in it, and I couldn’t move it. It was like dead weight. I also started having trouble with my balance and gait and had these “drop attacks.” During these drop attacks, my whole left side forgot how to work, and I’d tumble to the floor. I’d try to stand up, fall to the floor in awkward positions, or be in the middle of walking and fall down. I hurt my foot pretty badly during a drop attack and also fell down the steps. I started getting much more frequent migraines and memory problems. I had burning nerve pain from my hips down, but it got significantly worse during this time. It got so bad I seriously considered amputation in hopes it would help with the pain.
I kept going back to the doctor to get help and figure out what was wrong and why my arm suddenly would no longer work. I wish I could say she immediately sent me for imaging, but it took 3 MONTHS to convince her to do something! I’ve since switched doctors. When I finally was sent for an MRI of my neck and shoulder, they found a whopping 14mm cavernous malformation at C7-T2 that had bled! When they explained what they found, they were talking to me like it was cancer. So I spent the next month or so expecting cancer treatment. I was referred to a neurosurgeon in Tennessee. He explained that I had an incredibly rare disease that he had only heard about in textbooks. He never saw one before, never knew anyone who had one. And he had a board meeting with all the other doctors, and they said the same thing. He then told me it was best to watch and wait.

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.

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