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AVM Survivors Network

My Story

It was a day like any other for me. The last Sunday in January of this year. I had been to church that morning, had a short nap in the afternoon, baked brownies for my neighbours…a normal day. Just before I went to bed my daughter reminded me she needed a white blouse for grad photos the next day and so I headed up into the attic to get it for her from a box of clothes I had put up there. I don’t have any recollection after that, but have been told the story by my family. Aimee wondered what was taking me so long and called upto the attic for me. When I didn’t answer she came up and found me laying face down on the attic floor. I had had a seizure, thrown up and was semi conscious. 911 was called and soon the attic was full of people trying to help me. I was in the midst of cancer treatments for breast cancer. I was diagnosed in September of last year and had finished my chemo 4 weeks prior to this. Immediately everyone assumed this was related to my cancer. I was admitted to my local hospital and tests began. Again I have no recollection of the time in the hospital, but at some point an MRI was performed and they found I had an AVM in my brain which had caused an aneurysm which had bled. ThIs bleed caused me to have a mild heart attack and pulmonary edema. On the Tuesday I was sent by ambulance to Hamilton General which specializes in Neuro. Once in Hamilton I met my wonderful doctor, Dr. VanAdel who took me into surgery and performed a coiling on the aneurysm. This was done by going thru an artery in my groin. Very much non-invasive. I ended up being in the hospital for 10 days. For all that had happened I came out of it relatively good. Some headaches but overall a good outcome. Dr. VanAdel discussed that the AVM would need to be treated but he wanted me first to get my double mastectomy done, as I had missed my surgery date due to being in the hospital in Hamilton. He decided the best plan of attack for me would be to have my mastectomy and then shortly after he would perform an embolization on my AVM. He figured he would like to do 3 separate embolization a and that should be sufficient. 2weeks later I had my double mastectomy. Everything went as planned. 2 weeks later I headed into Hamilton General for what was to be the first of 3 embolizations. I was to be in the hospital for one night only and return home the next day. The surgery was again through the artery in my groin. Sadly, things did not go as planned. When they got inTo the areA of the AVM, they found the aneurysm had regrown to twice the size and it needed to be coiled again. Dr. VanAdel managed to get most of the glue in that he wanted, but I hemorrhaged before he was done. Again, I have no recollection of this next few weeks. My one night stay at the hospital turned into a six week stay. A tube was inserted into my head with a bag at the end which collected the excess blood from inside my head. I didn’t do much more than sleep and vomit for the next while. When my memory comes back to me I am about 4 weeks into my hospital stay. I was surrounded by family and loved ones thankfully Each day I would be taken down to ultrasound to have head ultrasound. I am sure there are technical names for this test but I don’t know them. I know that each day my brain was in vassospasms. I vomited a lot. They tried treating me with anti nausea medications but nothing worked. I was throwing up 6 to 8 times a day. In the 6 weeks I was in the hospital I lost 45 pounds as no food would stay down. My balance was off, I needed a walker to assist me with walking. My vision was affected. I already wore glasses but needed to get an adjustment to my prescription to help me see properly again. Finally the vassospasms subsided and I was able to go home. The adjustment to being home was difficult but made possible by friends and family. I have 4 children who also, along with my husband, stepped up and helped out. I am now 8 months out from all of this. Although I often wished for my normal life back, a new normal has taken over. I am getting on with life. I have finished all my cancer treatments and am now classed as cancer free. I have had one MRI which showed the aneurysm had not regrown again. I go in January to have it checked again and see whether there is anything more that can or needs to be done for my AVM. I still struggle at times with my balance. If I turn my head too quickly I stumble and could fall over. I still suffer from nausea at times. I throw up from being dizzy maybe 4 or 5 times a week rather than daily. It is slowly getting better for me. I have returned to my job as a school secretary. This was more for my own sanity than anything else. Sitting home day after day had me spiralling into a depression. At least at school I can forget myself and focus my energy on others. I don’t know why I had to endure all this. I try and find moments of gratitude in each day. As I read some of the stories on this page, I realize there are others who deal with this and more. What a blessing it is to know there are others who know how all this feels.