I’m a 67 year old AVM survivor who loves to spread awareness! Somehow I made it to age 60 before my AVM made itself known with a rupture while we were vacationing in Albuquerque in October 2009. Our 5 day planned vacation turned into a 2 month stay in the hospital and rehab there.
We had been in Albuquerque about two hours when I suddenly had a weird sensation in my head that soon became a horrible headache—with nausea, vomiting and diarrhea. My husband kept wanting to call the squad, but I told him it was just a migraine and would go away. After several hours in and out of consciousness and coherency, I agreed that he should call 911. That’s the last I remember for about 7 weeks! I was in the right place at the right time because the EMT’s recognized my symptoms as those of an AVM rupture and transported me to the correct hospital. Had I been at home in Ohio, I’m sure our small local hospital wouldn’t have recognized my symptoms and I wouldn’t have made it to a larger Columbus hospital.
After diagnosis, the hospital staff told my husband that “it didn’t look good.” I was taken into surgery within an hour of arrival and a talented neurosurgeon performed a craniectomy with clipping. I spent 3 weeks in ICU, a week in a step-down unit and a month in a rehab hospital. When we returned home, I continued outpatient therapy at Ohio State University once or twice a week for a year or so.
The subarachnoid hemorrhage resulted in a stroke and I do have some deficits. The most frustrating immediate after-effect was double vision. Fourteen months after rupture, I underwent eye-muscle surgery which corrected the double vision for the most part. I still struggle with it when I’m tired. I also had 6th cranial nerve damage which affected my taste, but that has improved over the years and I now enjoy eating most foods. I battle short-term memory loss, but my long-term seems to have improved. Balance issues are my main deficit after 7+ years.
After experiencing all the stages of grief, I have finally reached the acceptance stage. I try to focus on what I can still do, not on what I can’t. I want to offer support, encouragement, inspiration and hope to other survivors. I love meeting other survivors because it feels like finding a long lost sibling. It still amazes me that I lived my whole life without knowing I had this defect in my brain. I so admire other survivors, but the children hold a special place in my heart since I realize that I was blessed to be able to live my life with no prior symptoms except an occasional migraine headache. It breaks my heart that many of them won’t be so fortunate!
I feel very blessed to have progressed as much as I have in 7+ years. A large part of that has been because of the help and love I have received from my wonderful caregiver husband, my 4 grown children, their spouses and my five grandchildren.
The Joe Niekro Foundation would like to thank Mary Bratt for sharing her journey with us and the JNF community. We wish Mary continued good health!
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