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.