I was wondering if anyone had been diagnosed with cerebellar tonsillar ectopia as well as an AVM with history of rupture? I am having difficulty understsnding why with brain swelling occurring (which is symptoms of a bleed) surgery would not have been done immediately to resolve the pressure. It is something I am trying to come to terms with as I attempt to understand the circumstances leading to my little girl's passing. She had a hemorrhagic stroke last August 14th after being diagnosed with a 'healing' rupture from her AVM in mid June. The doctor's diagnosed 3-3.5mm (mild) cerebellar tonsillar ectopia (the back of her brain was coming out from the base of her skull. They knew this was happening the entire time, and the recommendation was to wait until the blood from the earlier rupture had reabsorbed. At the time, I was not told about the brain swelling and only found out about it from her autopsy. It was listed as the secondary finding after the ruptured AVM. I don't understand why nothing was done from mid June until her death in mid August besides at CT on July 1st. That CT also showed the same swelling. It had not increased or decreased since two weeks earlier. The angiogram was rescheduled twice; and Madelaine passed away the day before the day it was scheduled. The autopsy showed a massive rupture, and bleeding that was weeks old. I am just really struggling with the 'wait and see' approach, phone calls that were not returned just before her death, and not being informed that there was a lot of swelling in her brain. Does anyone have knowledge or experience of this? The report is attached below.
192-Readme1st.htm (103 KB)i feel so sorry about your loss. that is a beautiful picture of you both.