AVM: Another valuable...minformation?

AVM: Another valuable...minformation?

I was 20 at the time, (I'm 21 now), I woke up a friend's house, we'd played a few games than I before and had a couple of drinks, nothing major. But, the next day, it was around 10 in the morning, I suddenly lost the feeling in my right arm but at the time it didn't concern me, which I found odd. Turns out that I was starting to have a brain haemorrhage, which meant obviously I wasn't exactly in the correct state of mind to understand what was going on. My friend looked awkwardly into the distance as I rolled from side to side saying "I don't feel very well". I vaguely remember him on the phone to his mother, who was a nurse, she called the ambulance for me and while we are waiting I remember coating his room in vomit and then blacking out. I vaguely recall waking up briefly and I saw two paramedics and my friend explaining what he saw, but I didn't really understand what they were saying. My next memory is an outside on one of those beds with wheels on them, it was cold, so I guess they were probably taking me into the hospital from the ambulance. Another brief memory I have is waking up, vomiting over the side of my bed, not really caring about it, and then going back to back to sleep (I was pretty much just expecting it to be cleaned up at the time I will go up).

I think it was about three days after it happened that I noticed where I was, I opened my eyes and suddenly there was a blinding, incomprehensible pain in my head, I was very disorientated I didn't really know where I was. Then the doctors told me that I had an arteriovenous malformation in my brain, more specifically in my parietal lobe and close to my cerebellum. For those of you who don't know, an arteriovenous malformation (AVM) is a blood vessel disorder formed at birth. As I'm sure most of you know arteries are meant to carry oxygenated blood which is then lowered in pressure by smaller capillaries where oxygen is dispersed the rest of the body, and then the deoxygenated blood goes back to the lungs through veins. In an AVM arteries can sometimes connect straight to veins, which means high pressure blood is shooting through weak walled veins without the capillary system to lower the pressure. This means that it can haemorrhage, and oxygenated blood kills brain cells, suffocating them with too much oxygen. So obviously this is a bad thing.

Anyway they said to me that my AVM was in operable as it was far too deep into the brain to get to without causing some major damage, considering that I had managed to get through the brain haemorrhage fairly unscathed (for example not losing my legs). They said that they would send off to Sheffield for Gamma knife treatment to seal up the veins with radiation, but they said not to hope on this because surgeons simply won't go near it. At this point, I didn't really care what they were saying to me, all I cared about was getting rid of the pain that I was feeling in my head (dealing with light was the hardest part).

I was in the hospital for 12 days, I really wanted to get out of there quickly, the lights were killing me and so was the incessant beeping of the various pieces of equipment. So my parents took me home to my bed, and I've never enjoyed silence so much. Couple of weeks later I had a few friends come and visit me from university, I read up a little bit more my condition, but for a while obviously I was just trying to manage the pain as it slowly dissipated. When it did my situation finally started to dawn on me, you see the chances of an AVM believing increases every year (by 2 to 4%) and each time it bleeds there is a moderate risk of death or major disability. Quite frankly any percentage of having a brain haemorrhage is too high, but this is what I had to deal with. There is nothing you can do to prevent it from happening, it will just happen at any time no matter what you're doing and that will be it. This is something that I couldn't come to terms with. That was until July, when I got a letter through the door from the Sheffield Gamma Knife Centre saying that I should come in for an appointment. I didn't know what that meant, so I tried not to get my hopes up. Suffice to say, this left me fairly emotional.

Later that month, I arrived at Sheffield for my appointment to which they took me through all the methods of surgery that they couldn't perform and why, but then finally, they told me that glorious news, they would use gamma knife to seal up my AVM and it was very probable to work. Now this didn't sink in for a while, I was essentially cured! Over 2-5 years the radiation would seal the veins causing the issues so no more blood could run through them, eliminating the risk of a bleed.

As far as the actual surgery went, it was painless, the cage they screw to your head however was not. I'll leave that to your imagination. They performed two surgeries about a month apart and then discharged me. I didn't feel any different really, but I knew it had started working.

With that, I went back to uni. I had built up my hopes for uni, in my mind, when I went back to university everything would be perfect again, I would feel just as I used to, and just as healthy. I quickly found out that recovering from a stroke takes a lot longer than I hoped. Perhaps I was a bit naive to think otherwise, but it's a fairly new experience, I'm sure you'll agree. I saw friends, and I told them how I was doing, but I just didn't feel right. My doctor prescribed antidepressants, but I didn't want to rely on them, so I wanted to arrange a councillor.

That was going alright, but then I developed epilepsy. I've now had seven seizures to date, and each time the medication dose has been increased. My most recent seizure was a couple of days ago so I'm on 200mg Lamotragine two times a day now. The medication makes me feel terrible, and it makes me want to tear houses down to the ground with the unfairness of it all. I can't go back to uni so I'm having friends come down, but I've missed so much.

I know I'm lucky to have gotten away with it, and the fact that it became operable, but it's killing me at the moment. I don't mind letting that happen as I think it's pretty normal. It doesn't make any difference complaining, it's just crappy luck, that's all. No one to blame.

I am well now, the pills are ruining my life at the moment, and I lost some vision which isn't coming back any time soon. But I finally got an appointment to see a councillor on the 10th June which I am very much looking forward to.

I'm hoping recovery will go smoothly from now on. But I'll let ya know.

13 Replies

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  • so has the gamma knife thing repaired it so you wont have the bleeds any more?

    also good news that you are seeing a councillor, do you know what type of councillor?

    i have learned something new today, and you have described it all very well indeed

  • Thanks! The gamma knife surgery takes 2-5 years to seal the veins up so blood can't pass through them anymore, making them no problem. Although there is no guarantee.

    No idea what kind of councillor, I think it's just going to be a neutral party to splurge all my feelings on. I think it will help a lot.

  • i found it all very interesting indeed

    i hope the councillor goes real well indeed, it does help a lot

  • Horrid isn't it......the whole messy business. But your description, although vivid and disturbing, shows traces of humour and a lack of self pity.

    Good luck with the counselling. I'm sure you're aware it wont be a miracle treatment but should help with your aims and sense of direction, not to mention your stance on dealing with the epilepsy.

    It's good that you're here and I look forward to updates on your progress.

    Best wishes, cat :-)

  • I've found that nothing "out there" will heal my worries and sorrows, but it certainly does help to hear other people's stories.

    I certainly will.

  • Good luck and I always think that there are so many advances made in research and medicine that it is just a question of time for a cure- lets hope it's fast. You are inspirational

  • I hope so too, thanks.

  • You have a brilliant way of writing, maybe that's your way forward! Tricky isn't it, in one way we want to say great news that you have recovered as well as you have, but then does it really feel great when you have had to go through it in the first place?! Good luck and best wishes

  • It's the best of a bad situation, I think.

  • Hi B_S_A,

    Your story and description of events relate very much to what happended to me. I am in my 6th year of recovery and due back to Sheffield later this year to have a consultation and possible further treatment (gamma knife) to remove the remainder of my A.V.M.

    (The cage fitted to your head is awful but as they say..... a necessary evil)

    I saw a counseller, unfortunately I didn't find it of any help. 6 years in I now see a a Neuro Psychologist, they specialise in how the brain works and I would strongly recommend you see a N.P. if its at all possible. I can only say the help i receive now (weekly apps) has been immense, it is making such a difference to my life and how i live it. I just wish i had seen a N.P. from the beginning, but N.P. says.... better late than never.....

    BSA.... your story sounds very similar to mine, if you think I can be of any help, answer any questions private message me and I will do my best. :)

    Good luck and Take care

  • I like hearing about people who've been in the situation I've been in (I mean that in the best possible way) and especially as you're so far down the line! I'll definitely be messaging you.

  • Hi!

    From the way you write; you are clearly an intelligent guy. You say Uni is no longer a possibility. This obviously meant a lot to you. Is it completely out, or just postponed until you are a little further along the recovery journey? What were you reading? Could you consider studying on a part time basis?

  • Hey has the Gamma knife worked hun?x

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