Hello, I came across this site while researching for a good doctor for my mom. My mom was diagnosed with AVM on the right side of her frontal lobe. She was diagnosed in 2014 and we’ve been back and forth with her doctors, which have left us very confused and overwhelmed.
It began in February 2013, in flight, she had a partial seizure. That was the first and last seizure of that year. It lasted about 15 seconds, she snapped back to normal, did not remember those 15 seconds and denied anything had happened. At that time I did not know it was even a seizure, as it was not a typical seizure, more like mixed up words, sucking sounds, and shortness of breath. In May 2014, my mom woke up with loss of hearing in her left ear and a fever. The seizures started later that year and became a norm. November of that year, we had an MRI done and found out that she has an AVM on the right side of her frontal lobe. In December 2014 her doctor prescribed her Kepra for her seizures, which she still takes till date. In 2015 we began visiting neurologists. After sitting with a few we decided to go forward with one. We had a few sit downs until my mom was comfortable to do the endovascular biopsy. She had that procedure done in November of 2016. The doctors told us that she may have to do the procedure again so they can get a closer look. They told us that Endovascular embolization might not be an option for us because it can effect her motor skills. They said we might not have an option at all. This disheartened my mom and she has not gone back since. Her seizures have been kept at bay because of kepra and otherwise she looks fine, but we know it is something we want to take care of sooner than later.
At this point, we are extremely overwhelmed with the information provided by her doctors and would rather she see another doctor, preferably with patience, as we always have tons of questions. We’re also scared to take a step that might put my mom’s life in danger. If anyone can please advise what steps we should take, any guidance or a good doctor recommendation in NYC, would be highly appreciated. Thank you very much!