I am a AVM and a stroke survivor. I started experiencing my first symptoms with severe headaches in July of 2008. Until one day it got very severe where I needed medical attention, I was rushed to the emergency room where doctors ran many test until the MRI showed leaking of bleed in the back of the brain cerebellum due to the rupture of AVM. Before surgery they tried to embolization which effected left side deafness and surgery was done and in between surgery a stroke occurred which caused left side of my body to lose its coordination. Due to the stroke part of my cerebellum was removed and I had to fight for my life while many doctors told my family to prepare for the worst. I was lucky enough to get a second chance but in my followup in 2009 an angiogram showed some more residual of AVM. Another open brain surgery was done at Stanford medical center they could not remove it then they suggest Cyber Knife procedure also order to control extra hydrocephalus in my brain a shunt was placed to control the extra fluids. A cyber knife procedure which was an experimental procedure was done as my last chance to rid of all the residue and AVM in the brain. In 2012 a MRI was done to show that all the AVM was thankfully gone. I’m thankful for my second chance but however due to the surgery my left side remained weak and I had lost my hearing in my left ear. I have been doing years of rehab to help me get my strength but nothing has worked for me. After my surgery I have been getting very angry and upset which has caused many problems with my family and in my house. I’m thankful for my second life but would jump at an opportunity to get my old life and strength back.
Hi Gary! You’ve had a heck of a battle. I was diagnosed last May following a rupture and had gamma knife last November, so still waiting for some time yet to come. Lots of great folks on here with a wide range of experiences that sure helped me out. Take care, John.
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Hello Gary this is a great place for information and support. I have not been through alot like you . I am only 10 months in from being diagnosed with brain avm/aneurysm and will be starting treatment in June. It is nice to hear other people’s stories. We can all help each other.
Gary, I know what it’s like to be angry and upset. Please know that those around you want the Best for you. We all do. Keep working a little bit every day on your strength and coordination, you will very slowly improve. I am rooting for you!
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