“I thought to myself, am I crazy…?”
I was in my last semester of college, at 36 years old, when I starting noticing something was wrong with me. I would be in class and noticed I couldn’t read my own handwriting or sign my name. I had to start bringing my laptop to school to take notes, etc. Then I couldn’t type, I had no control over what my fingers did. A couple of days after that symptom, I began to feel like I was falling when I was in the car driving; which made it very hard to concentrate on the road. A day later, I started to see two of everything. I lost all sensation in my face and I had slurred speech. The final symptom was I lost all coordination when walking, moving, etc. I didn’t know what symptoms I was having meant, because I didn’t get them all at once. I would get one symptom and then a couple of days later, I would get another, and another a couple of days after. I went to my primary doctor, they told me it was a virus, gave me antibiotics and sent me on my way. The next day, I had another symptom, so I went to an emergency walk-in clinic, they ran blood work, said the same thing and to keep taking the antibiotics. I thought to myself, am I crazy, or what is going on with me?
That weekend, I got worse. Monday morning, I went to the emergency room (at this point, I couldn’t even stand). They ran the first set of tests and told me I had had a mini-stroke. I was upset, but not as upset as I should have been because by this time, I was almost out of it totally, not able to understand what was going on. Hours later, they came and said I had an aneurysm that hadn’t burst yet (sounded like surgery to me). I sat in a hospital bed for 3 days with doctors shaking and rubbing their heads, they didn’t know for sure what was wrong with me.
They could tell I was getting so much worse, the systems in my body were shutting down so they put me in ICU on life support. Finally, they came in and said they rushed my MRI film to a trauma center. A radiologist saw my film, rushed it up to the head of neurology and said, “You better take a look at this.” The neurologist said, “You better get that girl over here right away.” The hospital I was currently at said they needed to rush me to the trauma center, but were waiting for a bed to open up. I stayed all night before they rushed me there by ambulance. I stayed in ICU there that night, was in surgery the next morning for 8 hrs. I had what is called a cavernous malformation on my brainstem. I have had it since birth but it started to grow and put pressure on all my systems and was shutting them down. They didn’t get it all the first time, so I knew they were going to have to go back in. The first surgery was in Feb. 2006, the second surgery was in September 2008. I have to go back every six months for an MRI to make sure it has not come back.
After surgery, I was paralyzed my left side, and it put a curvature in my right eye vision (tilted) and has made we weak on my left side and done a few other things that I have to take medicine for. I had to go through rehab to learn how to walk, talk, dress myself, eat, get in and out of a car, learn how to do things like tie my shoe with one hand until I got better. After I finally got home, I still had months of therapy for motor skills. It was tough.
The deficits that I still deal with are vision impairment, weak left side, walk with a cane for support and balance, can no longer ride a bike, run, cannot carry heavy things, memory problems, still have a hard time with words, such as trying to say a sentence with a word, can’t get the word out that I want to say, but can see the picture of the word in my head. I have tingling on my left side and loss of sensation in the right side of my face. The most important deficit that is permanent is the trigeminal nerve pain I have from the surgery. It is pain all the way up and down the right side of my face that is rated about 10 on the pain scale. I have to lay in a dark room, no noise for about 2-3 days depending on the pain. I have to put a cold, wet cloth laying across my face to just be able to tolerate the pain. I have to take seizure medicine for it, but it doesn’t take it away entirely. The pain first starts as a headache, then it spreads to my cheek area, sinus area, ear, down through my jaw and into my teeth. I have had it go into my neck, shoulder and over to the left side of my face.
My advice for those who are experiencing this also, is to make sure you are going back to see your doctor when they tell you to so they can always monitor your situation. I am glad I found Angioma Alliance and to know there are quite a few others going through this also. I pray we find a cure. Maybe with all our stories, the wonderful minds of our doctors can figure out something to end this terrible thing for all of us. I wish you all well!