It all started in 1990 when I was five. I was at School in Canberra and had a really bad headache so I went to the school sickbay to lie down. One teacher told me that I was not sick and that I was to go back to class. I was feeling so ill that I ended up falling asleep on a beanbag in the sick bay. My mum woke me up when she arrived but I didn’t have a clue who she was nor did I know what was going on. I tried to get up but I couldn’t;t walk and I ended up going to hospital. The hospital ran many tests on me but did not get a result so I got sent to Sydney. When I was in Sydney they ran some more tests and found out that I had suffered a stroke due to an Spetzler- Martin Grade 5 Arterial Venus Malformation (AVM) on the the Right Cerebral Hemisphere of the brain.
The AVM caused me to have many more strokes after that but they were not as bad as the first one. I started to feel very weak in my left side. The AVM was growing. My doctor told me there was a way that he could stop the AVM from causing strokes as it was stealing the blood from the main artery, it was called Emberlisation. This procedure was conducted in the hospital where they used a form of jelly like glue but that did not work and I almost died on the table. When I awoke I could not use my left arm at all. I was told I would regain full use of it in approximately six weeks but this did not happen. I had to learn to write again as I was left handed. Life back at school became very hard as the school became over protective because they had made such a mistake when this first happened. I wasn’t allowed to play sports or even run and I had to have a Special Education teacher as the stroke had left me with learning difficulties. It has been very hard for everyone in my family. My father who was in the Navy remained on shore duty so he could take care of my four siblings as mum and I were always away at the doctors or in Sydney where I had to come for hospital visits. It has been hard for my siblings to understand why their sister was a bit different and why mum was hardly ever home. As we grew up we all grew closer. In 1995 when I was in year six, we moved to Sydney so that made things easier as all my doctors are here. Somebody thought it would be a good idea to go to family counseling to help me and my siblings understand more about what was happening. But I found that it made things worse as all the counselors would ask is “what is the worse thing that could happen to you” I answered with tears running down my face “I could die”. When I started high School I had to attend a school with a Special Education Support Unit for children with disabilities as my AVM caused my learning to be too difficult without help and the high school did not provide one on one teaching. I made a few good friends but it was hard because as the year went by they came and went. I got called some really nasty names when I was in school; two of the worst were ”hoppy” and & “the one armed b*tch.” I also found out that I was epileptic. That was hard as well because the Principal of my Special Unit never believed that I was epileptic so I had to go in to hospital for a week-long test. It all got way too much for me and I ended up changing schools for year 10 but during the exams I had a brain hemorrhage and didn’t to get finish so I never gained my year 10 certificate.
In November 2000 we moved overseas to the Marshall Islands for a two year posting. There was a lot of conflict over whether I should go due to the medical system being considered third world over there. Even though I understood the risks, I was 16 years old, old enough to make up my own mind. I figured I can’t be locked in a bubble my whole life. It was a great opportunity for my father and I didn’t want to stop it from happening. There was one problem we could not overcome; my medicine was not available on the island so it was being sent from Australia, but when the prescription expired they stopped sending it and I had a fit everyday until new stock arrived. While on a break in Hawaii with some friends and two of my sisters I was feeling ill and suddenly passed out. I was taken to the Pearl Harbor medical center before being transferred to hospital. I was vomiting for eight hours and the doctors at the hospital ran some tests but could not find an answer on why I had passed out. One time on the island I was at home with my younger sister and fell asleep with a headache after having a fit. I walked out into the family room and sat on her, scaring the hell out of her. I didn’t even know that I had done this until she told me when I was feeling better. I do have to say that living overseas was a great experience but I wouldn’t live in a developing country again. One thing that really does upset me is when people confuse the way I walk with being drunk as I don’t drink but I do go out sometimes and this makes life hard. At 19 I had to have a hysterectomy.When I found out that I had to have that operation I cried and cried. I do have to say though, that considering what I have been through and I know that I will
have to go through more; I have had a very good life. Sure I get scared but I have a great supporting family and I know that they have been through a lot as well. If I could pick the family of the year Id have to pick mine due to their life changes they all had to make. This AVM is inoperable covering the entire right side of my brain and is growing. My prognosis is day to day; it will leave me a “vegetable” or kill me. Even though this is a lot to deal with, life goes on.
In 2003 on my 19th birthday, I found the love of my life and in March 2005 married the sweetest guy in the world. 2 months after our wedding i ended up in a coma not sure if i was going to recover they called my sister out from America when i did recover the doctors couldn’t tell me what had happened as no one knew October 2012, I’m 28 and now having fits that last all day I get dizzy, I can’t walk, and then I’m vomiting all day, i believe the first time I had this one was in Hawaii when i passed on in my sisters arms but we will never know, I haven’t had one like that in awhile (touch wood), but I’ve been having lots of little fits and feeling dizzying a lot, we also believe i’m fitting in my sleep again, i have 2 big test coming up a MRI, and a at home EEG the EEG goes for a week, gets a better reading, both test where inconclusive the MRI nothing had changed, that was good, and the EEG the one week i happen to not have a fit. i gained my year 10 certificate after years of study, and this year (2013) I’m studying computers. January 2013, I’m diagnosed with Vertigo, only we are still trying to find the cause, i had an episode ended up spending the day in hospital no fun. The Vertigo seems to of gotten worse I seem to be getting it more regularly, so I was sent for test and the results came back, they believe its a form of migraine, very rare, but that’s me, I’m almost 30 now and for the last 6-7 years i have had the greatest friends all over the world Thanks to a Canadian Band called Your Favorite Enemies, they have been people I can turn to whenever i needed to. with there recent tour to Australia it meant so much to me. Thank you so much for being there all of you 🙂 September / October 2014- i was suffering from weird dizzy spells, after
having my bloods taken it turned out that my Tegrotol levels were too high which is weird as I’ve been on Tegrotol since the very beginning with no problems so we had to reduce what i was taking.
August/September 2015 – so with a year of turns and a screwed up foot that I don’t think they will ever fix, i went and saw my Neurologist he tells me that its been two years since I’ve had a Brain MRI and I’m meant to have them yearly we were trying to fix my foot and with all the scans i was having the radiation wasn’t good. So I’m booked in for October 2015 My AVM latest scan results say no change. 2016 Ive been suffering from migraines after every epileptic seizure no matter how small it is, which is a new thing we have been playing with my medication and so far nothing has seemed to work February 7th 2017 i had four massive epileptic seizures; my mum and husband were on the verge of taking my into the hospital February 15th 2017 i saw a new neurosurgeon today and he explained everything really well we also went through my MRI scans going back over 8 years, he said that my AVM is twisted around my brain and arteries, that he has never seen an AVM like mine before, there is noway he would recommend operating as a bleed is to much of a high risk. he was also surprised i was alive. June 2018 I started seeing a new GP, i left him a printed out copy out one of my MRI scans, when i went back they told me that they were surprised i was able to get up and walk out of there. July/ August 2018 I’ve had really bad pain in my right eye since the beginning of July i first thought it was sinus pain, my GP put me on a dose of Antibiotics that didn’t do anything when i went back to the GP they requested i went into hospital as there they could take scans and get a better idea of what could be causing the pain, i had a CT scan MRI and an Eye exam, i was advised that my AVM had changed since my last scan and is now putting pressure on my eye. However there is nothing they can do about it, only try and control the pain, I’ve been on all sorts of pain relief and nothing had worked yet. i just saw my Neurologist and he has requested i go for an Angiogram (as they get a better view of my AVM in that scan) and visit the pain clinic he also gave he a new pain relief that comes in the form of a patch. After two years of constant eye pain, it went away on its own.
January 22 nd 2021 (my husbands Birthday) we were out shopping and I had this really bad neck pain I also lost hearing for a few minutes, I felt so sick that I had to sit down, I ended up being sick and I knew something was off, so we called an ambulance turned out I had suffered an acute brain bleed, and was sent to the nearest Neuroglial hospital, once there they told me it was possible ive need to have surgery. I thought it over for a while and decided that it was the best chance of survival, so I let my loved ones know that if it came down to that to go ahead with it. After a week in hospital I was unresponsive, luckily my husband stayed later that night, On the 29 th of January I ended up being rushed in for emergency brain surgery to relieve the pressure on my brain. I was coming around really well that I was taken straight back to the ward instead of going to ICU. I was in hospital a week and a half longer after the EVD surgery. On the 8 th of Febuary 2021 I was discharge from the hospital. But the migraines I suffered were the worst I had in my life they went on for about 3 months after coming home from the hospital, now I’m 39; and pretty much back to the me I was before the bleed.