AVM: Fear Is The Worst Part Of It

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Fear Is The Worst Part Of It

6 August 2005

Hello to anyone that choses to read this and thank you to those who have already contributed and whose narratives I have read. It is an odd world to be in. When I read the stories of those who have been in the same situation as me I feel that here are people who understand what is happening.

My story, I guess, begun when I was a child. I'm not sure what age I was. Perhaps 7 or 8. I lived with my mum and two younger brothers. The first memory I have of knowing there was something wrong or thinking ( paranoia?) there was something wrong with me. My grandfather happened to be staying with us. He was wallpapering our house for my mum. On the night before he was due to leave I had what I have always thought of as a fit of some sort. I woke in the night and couldn't talk or move. I knew that something was wrong. I managed to throw myself out of bed and bang around on the floor. My brother came in and ran to my mum saying that something was wrong with me. It passed and the next day I stayed home. My mum spoke to the school and because the incident coincided with a dental appointment it was brushed off. I had a panic episode... I didn't want to go to the dental nurse...so had found a reason to stay home.

Then when I was 11 I started having severe dizzy spells. I collapsed, fell down stairs and had an odd heartbeat. My doctor sent me to the hospital for ECG's and EEG's, all of which turned up nothing. In desperation my mum took me to a homeopath who told us that I ate too many apples! I was restricted to 2 apples a day. The dizziness continued.

I am now 28. Since I was 11 I have always had the dizziness and severe headaches. In the last three years the sight in my left eye has gotten very bad. And to cut what is becoming a long story short - in April this year my brain haemorraged. I was lying in bed and felt an intense pain run up my neck. My head hurt like nothing I've ever felt before. I told my partner that I thought maybe my neck was broken. Within a couple of minutes I was unconscious on the floor vomitting. By the time the ambulance got to me I was completely paralysed down one side of my body and face. I could barely breath let alone talk and I thought I was going to die. And now like most of you I know I have an AVM.

Mine is in my left frontal lobe running parallel and is 2cm by 3cm give a couple of mills. It is inoperable and I am on a waiting list for radiation. I think that most of the contributors on this site are from the U.S which figures because this is a U.S site. I am from New Zealand - down in the bottom of the Pacific. I am on an antiseizure medication which we call Epilem. It's hard reading through some of the narratives because drugs and treatment are different. Here in New Zealand we have a public health system. If you want to have private health insurance you can but most healthcare is covered by the government. I am unlikely to get the radiation until early next year at least. I don't know if this is a good or bad thing. Does anyone know about timelines for this?

I guess the strangest thing about my experience with having an AVM is the changes it has made in my life. I have two children. A girl and boy aged 7 and 5 respectively. I can no longer drive. I've only just gone back to work part-time after 3 months at home. A lot of the things I took for granted in my life are now a real hassle. I've read some of the other narratives and felt such empathy and... ( the word eludes me ???!!!!) After school I used to be able to pick my kids up and if they wanted to have a friend over it wasn't a problem. Now it is. Like other people on the website I've found myself crying all the time. In the first few weeks after the haemorrage I thought I was going insane - I felt like myself but...NOT. The pain in my head and the tiredness and the confusion all seemed to be conspiring against me.

My reason for submitting to this website is this: I feel the need to relate to other people who have an AVM (past or present) who know what this feels like. My family and my friends have all been very very supportive. I am lucky that at this age I have been given the gift of knowing how loved I am. And also to know just how lucky I am to have what I have and to be alive to enjoy it.

I don't know if anyone else has experienced this but I am just going to come right out and say what I need to say. When I was in the hospital I saw the fear in the eyes of those I love. I feel like they need me to be okay. Even though most of the time now I don't feel okay. I have only just come off the pain medication and that is because I know that I was becoming dependant upon it. But the pain is still there. And the fear is still there. And I guess that the fear is the worst part of it all. If you wish to talk to me - with advice or anything else please feel free.

Update: 30 January 2007

So, here I am almost two years on since the bleed. I had radio-surgery in December of 2005 and as far as I know that went really well. I had a MRI done in December of last year and the AVM has shrunk to almost half its size. The ins and outs of an AVM still really baffle me. Emotionally and "in my life" I've come a long way.

The radiosurgery was slightly more painful than I thought it would be. Although Im thankful it wasn't real surgery! I lost some hair, which freaked me out. And have what I can only describe as displaced sensation on my head. For about a week I battled with what I thought to bugs flitting across my forehead till I realised (sitting at work playing with my hair) that what I should have been feeling in one part of my head was actually registering on my forehead.

About 6 weeks after the radiosurgery I started getting very intense headaches and pain. Also tingling in my face and a numb/dead foot. My neuro guy is certain its just a reaction to the healing going on inside my brain. Which has made it a little easier to cope with. As long as things aren't getting worse then I'm a happy camper.

I ended up quitting my job. A friend of a friend ran what in our country (NZ) is called a canteen or tuckshop at a high school. And offered the business to me. So I jumped on it. The job I had been doing was in a call centre where we mainly dealt with people who were on a type of government benefit after an accident. Some of the people I had to speak to really ran me ragged. Because an AVM is congenital I was entitled to no assistance whatsoever. However if I had been drunk, driving a car and smashed into a power pole and suffered brain injury then I would receive assistance. Beautiful how it works. So, talking to people whom I obviously saw as being in better condition and going the cushy way was painful in and of itself. I felt selfish being in this state of mind so it was a therapeutic thing to get out of it. And now I'm self employed and loving it. Im my own boss, and I work alone which seems to suit me..

I have very small deficits which are probably more on the humourous side than the problematic. I forget words or say the wrong word quite often. My memory isn't too hot either, but I attempt to get around this at work by designing all my paperwork myself so that nothing can be missed. Im still hugely tired, and still having painful headaches. My neuro guy put me on Tegretol after the tingling/numb stuff started happening though and that has helped a lot.

I still read all the stories and updates on the site and get amazing inspiration through what other people are experiencing. I've found that every now and again I need to read what is happening to other people in a similar situation just to regain some sort of strength. So I thank you all.

I've gotten over the need to talk about the AVM experience with almost everyone. I guess that the hardest part of the whole experience has been peoples reactions. "You look great". "But theres nothing wrong with you now". "Well, it could have been worse". Some of that I guess comes from a lack of understanding, (maybe I should become an ambassador for education on AVMs!), but when someone says to you "it could have been worse" theres that definite feeling of yeah ... ok, I'll remember that, thanks.

And I'm not a big ol grumbler. My biggest moans of angst have been in this narrative and this is only my second posting, otherwise I've just tried to get on with life. SO, I guess that that is one of the things the whole AVM thing has taught me.

But the fear of the whole thing has gone (pretty much). I have a great life. During this whole thing I have become self employed, we've bought our first house and celebrated our 10th anniversary. I have a lot to be thankful for, and there is a pot of gold at the end of the rainbow.

Discussion, comments, or questions: Laura Mason

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