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AVM Survivors Network

My story

January 28th 2016 started as an ordinary day. I had dropped my son off at his second day of grade 1, went to get a few groceries and headed home. I put my (then) 5 month old down for a nap and turned The Ellen Show on (its on at midday in AUS). Around 2pm my daughter woke from her nap and I was getting ready to go pick my son up from school. The headache hit me like the hulk took a run-up with a metal pole to the pack of my head. I fell off the couch, clutching the back of my head - thankfully I did not pass out. I rang my husband at work, crying, I told him my head felt like it was about to explode and I was heading to the doctors. I picked up my son from school 1/2 hour early, tears streaming down my face, I drove us to the doctors surgery. The nurses could see the pain on my face and got me into to our family GP as quick as they could. I told her the story and she sent me straight over to the ED. My husband and kids followed. After hearing what had happened they told me I was going for a CT scan to rule out a bleed on the brain, “We have never had anyone come back positive here so we just need to rule it out”. They didn’t rule it out. Not only did I have a 5 mm aneurysm that was filling my head with blood, they also found a large AVM (3cm x 2.7cm x 2.1cm) in my cerebellum - a very important part of the brain. I was airlifted to our nearest major Hospital (900klms away) and placed in the ICU ward for 3 days and Nil by Mouth. After 3 days the blood had slowed its spilling into my brain and the pressure was slowly subsiding. I spent 8 days in hospital 9 hours away from home. 5 weeks later, I ended up back in hospital when I was woken screaming by a massive pain in my head that traveled down my spine. A lumbar puncture showed that although no new bleed had occurred, there was still too much blood in my head and it was placing pressure on my AVM and the cerebellum part of my brain.

That was 2 weeks ago. I am currently suffering a constant, unshakable headache and awaiting a full treatment plan to be drawn as my doctors here in Aus are communicating with doctors in USA. So far it has been deemed far too risky for any invasive and non-invasive surgery to occur and my only option it stereotactic XRT - which I have been informed is radiation therapy). Living in a small town, means I will need to travel each and every time I need to undergo this therapy and be away from my family for the time it takes. We have been told many times that I was extremely lucky to survive my aneurysm and that the likely hood of surviving without any treatment is low - due to the size and area that it is. Being only 27 and having a young family (6-year-old and a 7-month-old) this is the scariest part of the whole experience. I lost some coordination on my right side (and I am right handed) but as the blood pool slowly drains I am getting it back, fully. Currently awaiting treatment and staying hopeful for a ‘normal’ future. Trix.

I’m so sorry to hear about your experience - it really sounds overwhelming on so many levels. Do you have family close to help out? My AVM was spine so I don’t know anything about brain AVMs; however, there’s a great number of individuals who have gone through bleeds in brain - please reach out to them - LuLu comes to mind as well as Jeremy. I will keep you and yours in my prayers. I suppose you’re so lucky that you found it now where by you can be proactive in your treatment options. Bless you! V