Deania George is a Masters-level registered nurse in Newport News, Virginia. She shared her cavernous malformation experiences with Jessica Biggs, our Health Equity Specialist, as part of a Breaking Barriers research study. We are sharing parts of her interview with her permission.
Q. Tell us about how your family managed sickness when you were young.
A. I grew up in St. Thomas Virgin Islands with a single mom who was very traditional and believed in home remedies. As a child, if we had a cold or the flu, my mom would administer home remedies, like tea for example, prior to taking us to a doctor to get antibiotics. The only time that we went to the doctor was if we were really sick or if we needed to register for school.
Q. What led to your diagnosis?
A. In 2011, the Friday after Thanksgiving, I experienced the worst headache I ever had! I remembered taking Tylenol and Advil but the headache did not go away. I went to sleep and woke up the next morning feeling very dizzy, nauseous, and unsteady while walking. I was throwing up everywhere and was unable to get my balance. By Saturday after my symptoms did not get any better, I finally went to the closest ER. After the CT scan results came back, I was transported to another local trauma hospital that night. I was diagnosed the next morning after completion of the MRI with a hemorrhage from a cavernous malformation in my left middle peduncle
Q. Did you have any symptoms beforehand that, in retrospect, might have been associated with a cavernous malformation?
A. As a teenager and young adult, I’ve always suffered from migraine headaches and motion sickness. The first time that I found out about cavernous malformations was when I was diagnosed in 2011.
Q. After you were diagnosed, what was the suggested treatment?
A. After my first bleed (2nd and 3rd) I was treated with medications such as steroids, pain and nausea medicine. We did discuss surgery but my neurosurgeon decided that it was best if we did the watch and wait. He basically told me to go home and rest and wait for the bleeding and swelling to go down At that time, I was very nervous because it’s brain surgery! It’s very nerve wracking and I was a new mom with a 1-year-old daughter. But I recovered, each time. I did inpatient and at home physical therapy which helped a lot. I also got several second opinions.
Q. What has happened since then?
A. I’ve had a total of three major bleeds since 2011. My second and third bleed was in 2013 and 2017. After each bleed I went home and rested for about two to three months while doing physical therapy. I’ve had several second opinions from doctors in New York, at Weill Cornell and Columbia. I also went to UVA and VCU. Also, I had repeat MRI’s just to track the growth of the cavernoma in my brainstem. Because of the location of the cavernoma, we’ve decided not to pursue surgery at this time due to the high risk of debilitating symptoms. The symptoms I’ve experienced during a bleed are very devastating. At times I can’t walk, talk, or eat until I rest and recover.