AV Malformation

If we all worked on the assumption that what is accepted as true were really true, there would be little hope of advance - Orville Wright

AV Malformation

image by: Kim Bindon‎ AVM (Arteriovenous Malformation) Awareness
     

GOD, I LOVE LIFE. Every morning I wake up, open my eyes and say, “ALL RIGHT!! Another day and I’m still here!” Sounds a bit extreme doesn’t it? This attitude is not that surprising when you consider that I was diagnosed almost eight years ago with a medical condition that could kill me at any time with no warning. Given that, you can either curl up and die inside or you can decide to LIVE.

My name is Veronica White, and I am a firm believer in the fact that everyone has a story. So this is my story… Mine is not exactly your standard story though. I’ll start at the beginning, back in grade six…

Life was going along pretty good back then. I had my friends at school, my Irish dancing, Girl Guides, birthday parties and after school activities, etc. I am the oldest – I have two younger sisters and a younger brother. There was nothing super different about me or my family, and things were going along pretty smoothly. But then I had that CT Scan in early July 1996. I knew something was wrong when, after they took the pictures, they told me that I had to wait for a specialist to look at the films. Then they finally told us the news – the news that would change my life forever – that I had a life-threatening condition called an AVM.

I didn’t know anyone else with this condition. In fact, I had never even heard of this condition before! The doctors told me that I might need surgery even if I did have the other treatments for AVM. I refused to believe them, simply because the thought of having people cut open my head and poke around in there terrified me. I refused to believe that this was what my life had become. That this was, in fact, who I was now. A girl with an AVM, something that could very well kill me at any moment, no matter what I did.

What is an AVM you ask? It stands for an arteriovenous malformation and is a mass of incorrectly formed blood vessels that shaped in my brain before I was born. It is rare, and is almost never identified before one of these “bad” blood vessels breaks, causing a hemorrhage in the brain and usually death or severe physical or mental handicaps. I was one of the “lucky” ones in that I was identified before a bleed. I went through all of the three possible procedures to help the situation. First, during the summer in which they found my AVM, the doctors tried embolization (or gluing treatment) which reduced the size of the AVM but did not get rid of it.

Then the first bleed happened. I remember it as clear as anything – it was a Sunday afternoon, just after lunch. My sister, dad and I were planning to go bike riding together, so we were out in the garage getting down our bikes when I got this terrible headache. I went back inside and sat down on the couch. Within the next few minutes, the headache got worse and worse, I became physically ill, and I was crying from the terrible pain in my head. My whole family went into denial… we refused to believe that it was a bleed, so it wasn’t until the next day that I sought medical attention. “Was it a bleed, or was it meningitis?” we all asked ourselves. I finally went in to the hospital and the doctors just kept shaking their heads. “You should be sick, very sick,” they kept telling me, looking very confused. Two days later I had terrible pain in my neck and back as the blood from my brain went down my spinal cord. A very high fever followed, and I was extremely sleepy. When I finally got discharged, I remember thinking that “thank God I’d never have to go through that again!”

Then the doctors tried the second treatment – radiation, in grade seven. One large dosage (which was three to five minutes long) using three beams. Not only did it not help me much, but the radiation caused a “progressive stroke” by my grade eight graduation ceremony. I needed a full leg brace, or KFO, with an optional locking knee hinge though, but at least I was walking! I had severe right-sided weakness, and could no longer use my right hand, and had to teach myself to eat and write with my left hand. I kept refusing to wear the hand splint though… something my OT (occupational therapist) insisted would help my hand to function better. The reality of the situation still hadn’t quite sunk in yet though. I was in major denial that I had anything wrong with me, and I still continued to live life on the edge, taking dangerous chances and making stupid choices.

With time the reality of the situation did sink in though and as I accepted it, things started to improve. I did not want to start grade nine in a wheelchair, so I worked really hard all summer at my physiotherapy. I continued going to therapy at Erinoak, and participated in their horseback riding and pool therapy programs. It was great to work with such an organized team. They knew just what to do to help me gain back the most strength possible, and helped me get better to the point where I no longer needed a leg brace and could lead a pretty much normal life. That is, until a day in the middle of the summer of 2001 when everything would change again…

I was out that night in July with a few of my friends when suddenly a massive headache struck me. Now, with an AVM, the first signs of a bleed are the sudden onset of a major headache, then nausea or vomiting and/or, lastly, unconsciousness. Well, I got this worse than terrible headache, so I dropped everything, told my friends that I had to get home right away and took off on my bike. I rode home faster than is humanly possible, praying all the way for God to just let me get there alive and not make me die right there on the side of the road. I luckily got there alive, and passed out just minutes after I arrived at the house.

An ambulance picked me up and drove me to the nearest hospital, where I was stabilized and then put back into the waiting ambulance and transferred to The Hospital for Sick Children in Toronto. It was there that the miracles really started happening. At first, the doctors didn’t hold out much hope for me. My mom later told me that she asked one of them if they thought there would be any permanent brain damage. He looked at her with this strange look and said that was the least of our worries just then! The doctors gave little hope for me to live at first. Then they thought that I’d never regain consciousness. Then they thought that I’d never open my eyes, never get off the ventilator, that I’d never talk, walk, see… But I beat every single thing they said, and you know how I did it? Well with people praying for me, my family by my side encouraging me day and night, and my friends visiting me almost every single day in the hospital, how could I not?

I stayed there in Sick Kids until early September, the first day of school. My parents tell me I was devastated that I couldn’t start school with my friends, I didn’t want yet another thing to make me different from everyone else! But what could I do? I couldn’t even get out of my hospital bed into a wheelchair at that point! However, I refused to let that minor fact stop me and I undertook the great task of getting better to the point where I would be walking again. This was helped immensely by the Bloorview Macmillan Children’s Rehabilitation Centre, where I stayed from the day I got discharged from Sick Kids until December 21st, 2001. They had me in therapy from nine o’clock every weekday morning until four or four-thirty in the afternoon. It was immensely tiring and a lot of hard work, but they got me from a wheelchair, to a walker. Then when I left and continued to work hard on my own, I went to a quad cane, then to a single cane then to no cane. During the time I was there I made a lot of awesome new friends, did some crazy stuff like having wheelchair races around the halls, and stayed up many nights just talking and having fun with my new friends. I still keep in touch with a lot of them, and we see each other every chance we get!

The night that I had that last bleed, I had what I now call a “totally awesome near-death experience.” I could see myself walking along this really long wooded path. I walked to what appeared to be the end of the path, and then I saw this guy standing there just ahead of me. I went up to him, said hello and asked what I was doing there. He replied with a hello and said that I had to go back. When I asked him why, he simply replied that it didn’t matter and that I still had work to do. He walked with me about halfway back and sent me the rest of the way by myself. After that I woke up in the hospital!

Going through a “totally spiritual experience” like that changed my life. Back in my “rebellious teen” days, I used to think about things like running away from home and it influenced my decision-making skills (which weren’t very good back then to begin with). I’d gotten involved with the wrong crowd, lied, cheated… after all, who cared back then? My mom and dad did, but being all rebellious and hating the rules that they set (particularly my curfew, which was eleven o’clock. And for a sixteen-year old, I thought that was pretty early!). I’d tell myself that I might die tomorrow and then, oh boy would they be sorry they treated me the way they did! The truth was though, I felt sorry for myself, for who I was (I’ve been told that both the location of the AVM and the first bleed affected my judgement skills since then), and they treated me better than most other people would have. Looking at the things I did and said now in hindsight,

I regret a lot of it but I know that I can’t change the past. I couldn’t see it then, but others could. My friends pulled me through the worst of it but being the oldest, I had siblings who looked up to me… I had to set a good example for them, and I sure hadn’t been doing a very good job of it! Just before that second (and near total) bleed, my headaches had been getting worse and worse. I was taking the maximum dose of Tylenol most days, or even more on other days. But now that I’ve had this bleed and spiritual experience behind me, my outlook has been altered. I no longer desire or even think about running away, my friends are now only the best people, and I’m through with lying and cheating! I try my best to do the right thing and help other people, and it just sort of makes me feel good inside, seeing how far I’ve come in such a short time.

My whole attitude towards life has really started to change since then too. Now, instead of feeling sorry for myself, I’ve decided that there must be some reason for my survival. That life is to be lived and enjoyed no matter how long or short it is. That anyone can make a difference no matter who they are. While I was at Bloorview I helped other kids any way I could, by reading to them or tutoring or just trying to cheer them up. After I got out of Bloorview I decided that someone needed to do something about the lack of research or knowledge of AVM. I started my own foundation to raise money for research at Sick Kids Hospital and for raising awareness through a program at Toronto Western Hospital. I’ve been making speeches at various places, either to raise AVM awareness or as an inspirational speaker.

All throughout my OAC year of high school, I tried to make my difference in the world. First it was just by doing things like helping the school chaplain. I also participated in the Walk 4 Justice and the Fast 4 Action. Also, watching the AVM Foundation that I set up start to grow. Toward the end of the school year, I started applying for scholarships to help pay for my dream of going to university. I did get some, including ones like the Terry Fox Humanitarian Award, the Sharing the Spirit Award of Excellence, and the Spirit of Inclusion Award. I also received the Diana Thomson Award, given to me at Erinoak. They gave me a cheque and even had a little celebration for me afterwards. I was very pleased when I found out about these awards, and my parents told me that they were very proud.

So now I figure I’m pretty much ready for university, and I feel ready to take on the world! My plans for the future, while still unclear, look promising. I might be a music therapist at an establishment such as Bloorview. I might be a teacher. I might even be a social worker and help kids who have to go through things like what I’ve gone through! I’m not quite sure what I’ll end up doing yet, but I know it will be exciting and I feel ready to handle anything life may throw my way! My story has a happy ending too… I was scheduled for surgery on Wednesday the 30th of July this year. In one of my MRIs, they found that I had an aneurysm right in the middle of my AVM and a small blood vessel underneath that worried them. On the 25th of July, I went in for an embolization procedure to try to glue the blood vessels and the aneurysm. Talk about miracles, the aneurysm had disappeared and the blood vessel had shrunk and dried up! Then the following Wednesday, I went in for the surgery and, a few hours later, was proclaimed… cured!

So ever since the moment that I was proclaimed AVM-free, I’ve been trying to do one main thing – live. Every morning now I wake up and thank God that I’m still here to enjoy another day. I say my prayers every single night and try to do what I feel will help people deal with their own problems. I continue with my fundraising and giving inspirational speeches for AVM and other issues. My fundraising will, I hope, keep growing and will hopefully continue on for my whole life. I think it’s worth it (I think of it like it’s my baby).

The feeling I get from seeing the difference that I’m making is truly an awesome one. Knowing that people now know my story and want to help me make that difference, that is an amazing feeling as well. So everyone remember, YOU CAN MAKE A DIFFERENCE. Look around you and see what needs doing, then do it. Help that person across the street, pick up that pop can and put it in the garbage, visit a senior, volunteer at a charity. It doesn’t matter what you do just so long as you do something. And, most importantly, NEVER GIVE UP HOPE!

Source: Veronica White, Excerpt from My AVM Story, The Special AVM Research & Awareness Fund, 2011.

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Last Updated : Monday, October 7, 2019