It has been more than three years now since my family member was diagnosed with an AVM. Fortunately, it has not ruptured. However, there have been serious problems, personality changes...I am pro active. I see, by your many posts that tragic things can happen in a second. I want to know what to do if I get that call. I research. I encouraged second and third opinions. The best and most experienced doctors said, do nothing. Surgery could be tragic. If I had not encouraged the second and third opinions...the first surgeon was ready to do a craniotomy that could have caused serious impairment. Yet, as time marches on, no one else in this family knows the name of the surgeon who is best qualified if there was a bleed. They just continue to live life and ignore that we have someone who may end up having a stroke or worse. I just wonder if anyone else is in this situation. Total APATHY from friends and family. Disgust with the person who has the AVM when there are personality problems. Cancer would be treated so differently. There would be respect. There would be concern. With the AVM, there is judgement. The minute you say anything is wrong with the brain, there is judgement. I resent this so much. I am trying to be vague about the family member because I do not want them to ever know how sad I am about the way other people have viewed this condition. Just had to vent. Thank you for reading.
I totally agree about the cancer thing. My mother had 2 different types of cancer so I do know how serious that can be. She had a stroke shortly after surgery for the third time. They thought ovarian cancer had returned, but it had not. Just scar tissue in her abdomen. She actually passed away from CML ( a type of leukemia ). She couldn't swollow her medication that had her in remission. She was on hospice when she passed away. A cerebral AVM is an invisible condition that no one can "see". Someone on this site compared an AVM to broken arm or leg. You can see a cast. But when it is hidden from view no one cares.
AVMs, like any serious health condition, comes with it’s own set of unique challenges. The good news is you’ve found thousands of people here (both survivors and caregivers) who understand.
Your family member is fortunate to have you as an advocate.