Angela's Story
This story is written in Angela's own words. No alterations have been made.
They always say that nurses are the worst patients...I believe that! My troubles started in October 2009 about a month after my best friend died from liver failure and a month before my son left for boot camp to become a marine...my daughter was in the middle of her senior year of high school. My life was twisting in all sorts of ways to say the least! I was going out to hear my boyfriend play at a club and I parked my car and walked inside. Once I got in I started to feel "weird" and my left leg wouldn't hold me up. I stopped walking and held onto the counter and 30 seconds later I felt normal again. I went downstairs and had no more problems. In November or so, I began having a blind spot show up in the bottom part of my left eye. Again, these "episodes" would only last 30 seconds and at times I would have double vision. In March, I decided to get my eyes checked as I have to be able to see to work! I got a clean bill of health! They sent me a retina specialist to be sure where I was also given a great report...at my age of 40 I have the eyes of an 18 year old! I questioned what was causing the problems with my eyes, by now totally forgetting my leg episode. He mentioned to decrease my stress....which is impossible! When I got home, I was cleaning up my room and again, my left leg gave out on me. THEN, the light went on in my head...these must be connected somehow! I planned to go see a neurologist, but my daughter had prom coming up and graduation, so I put it off for a bit. But, before I had a chance, God stepped in a bit louder than before...
July 9th I had lunch with some co-workers and when I got hope, I was cleaning up my kitchen. I had an empty bottle of water in my left hand, and turned to put something on my counter with my right hand. When I turned back around I saw an empty water bottle in front of my face and freaked out! My heart raced as I was scared someone was in my house! I realized that was my hand, but it couldn't be...my hand should be by my side! I calmed down, and thought maybe I was dizzy and put my hands on the counter facing my sink. I felt fine...and realized I had dishes that needed to soak a bit so I reached to turn the hot water on with my left hand, however my right hand did it. What was wrong with my left hand?! I walked to the kitchen table and looked in the mirror looking for signs of a stroke and talked out loud and all was fine. Being the stubborn person I am, I continued with my chores of mowing the grass and sweeping and mopping the house. I called my boyfriend and noticed my phone (which was in my left hand) kept slipping so I just traded hands. I was to meet up with a friend in a few hours, so I went to get ready. When my boyfriend came by, he sat beside me and when I turned my head to him, realized he was touching my arm and I couldn't feel it. Then I got scared. After some pushing from friends, I went to a minor ER clinic and they checked me out and told me to see a neurologist the following week.
I found a neuro to see and he scheduled numerous tests for me...labs, a sleep deprived EEG, and an MRI and an appt in 2 weeks. I was anxious to see what was wrong as the internet is a very dangerous place!:) When I went back, the nurse put me in a room with a poster talking about MS and then I just KNEW...that's what I have! When he came in and said AVM...I had nothing to say as I had never heard of it. Basically he told me I was born with it and for whatever reasons just now having problems. He mentioned many ways to fix it, but in the end was sent to a neurosurgeon for treatment. I was quick to call and get an appt with him as I was ready to get this taken care of before it ruptured! I was seen in 3 weeks and his plan of treatment was Gamma Knife and immediately start on Anti-Seizure meds to prevent a Grand Mal seizure. The procedure was scheduled for Sept 1st and as that day approached I became more nervous and anxious.
The morning started early as I had to be there at 6am. The fitting of the frame on my head was most unpleasant as the left side of my body was still quite sensitive to any pain. The next step was an angiogram which was a bit painful as the meds had worn off by now. I could feel everything and as scared and nervous as I was, tears were just streaming down my face. I kept thinking of my family, friends, boyfriend and most of all my kids. When they had to apply pressure, I was still in such pain. They plugged it so it didn't take long until I could move on the gamma knife procedure. That was actually the best part of the day! I was able to leave by 1 and was so glad. Right before I left, one of the nurses gave me a pink stone that said "believe" and told me that when I felt down, to look at it and believe all would be okay. Again, I cried from relief, because of her kindness, from the meds...who knows. I still have that stone today and carry it to my appointments and when I feel like I need to. My journey since has not been without troubles.
I continued to have "episodes" as my neuro calls them with double vision, blindness in my left eye and the worst one caused my lose strength on my right side, slurred speech, my mouth drooped and some memory loss. I felt like I'd had a stroke, but he reassured me it was a side effect of the meds and after a bit of tweaking, I feel better. When I don't get enough sleep, I notice I can't find my words or remember things and get very frustrated. But, I believe that this will all pass and I will be an AVM survivor! My 6 month MRI showed scar tissue where the AVM was, and that is what more than likely is causing the seizures to continue. I have to stay on my meds until these "episodes" stop. No matter what, I am so grateful for the doctors God put in my life to help me cure this. I originally was told that most people never have symptoms and this is only found once it ruptures and an autopsy is done. I fully support sharing awareness for this as no one should have to go through this or to die without knowing it is even there.