Loaded Gun

Today's post is on what I like to call the “loaded Gun effect” which is probably the biggest psychological challenge I have faced since being diagnosed with an AVM

To explain a little better I will go into a little more detail on AVM's in general.

Effectively an AVM is a weakened or poorly formed collection of blood vessels between arteries and veins. These vessels are particularly important for bringing the pressure of your blood down, before it is sent back to the heart to be pumped round again.

The following images are swiped from http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-Is-an-Arteriovenous-Malformation-AVM_UCM_310099_Article.jsp

The following explanation is also swiped from the same site!

Normally, arteries carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an arteriovenous malformation (AVM) occurs, a tangle of blood vessels in the brain or on its surface bypasses normal brain tissue and directly diverts blood from the arteries to the veins.

As someone who has seen a man made version of an AVM its clearly a bad thing

AVM or Spaghetti Junction in Birmingham, You decide!

So now we know what an AVM is next I would like to explain my "loaded Gun effect theory"

Its been the devil on my shoulder ever since I was conscious and well enough to understand my diagnosis!

The idea of my AVM re-rupturing again absolutely terrifies me, I was lucky enough to survive my first rupture but would/could I survive a second?

Again from the same site

The risk of recurrent intracranial bleeding is slightly higher for a short time after the first bleed. In two studies, the risk during the first year after initial bleeding was 6 percent and then dropped to the baseline rate. In another study, the risk of recurrence during the first year was 17.9 percent. The risk of recurrent bleeding may be even higher in the first year after the second bleed and has been reported to be 25 percent during that year. People who are between 11 to 35 years old and who have an AVM are at a slightly higher risk of bleeding.

So to break it down in my first year post bleed I am much more likely to have a second bleed! This risk over time slowly goes down which is comforting, but its still meant I have been left in a state of near constant fear and terror since I learnt this fact. The chance of this is somewhere between 6-17.9%

Minor headaches after a traumatic brain injury such as mine are fairly normal, in hospital they said this was the brain healing itself, as well as the pressure being slowly released from the brain. Because my bleed was so large this took a long bloody time, I still suffer headaches most days but this is being controlled with medication and rest mostly.

Psychologically this has been the toughest thing for me, always being in an element of doubt whether its a normal headache or one I should be particularly concerned about, its been very much like having a loaded gun to your head! Every little fizz, minor pain, major pain has led me to instantly think “Oh Fuck, its going again” which I can assure you is not good for your mental health!

Over time I have become more and more comfortable with it, initially I was so terrified of being left alone, especially after being in hospital for so long. Whether you like it or not you become institutionalised, it becomes a safe place! On my release back in to the big wide world I had to quickly deal with not being in a safe place any more, which looking back was tough, but as well the fear was a little silly and illogical, just because I was in hospital did not mean I was any more likely to survive a re-bleed, although it would be useful to already be there!

The fear manifested itself in keeping me locked in doors for a time, even to the point of being too scared to leave individual rooms, I am much better with it now, I had no choice but to come to a form of peace with it really. I still get a bit fearful of walking around outside but that is more because I do not want to fall over and hurt my big beautiful mess of a brain more than what it already is hurt!

But its always there whispering in my ear “Is today the day?” “Dont do that, you'll die” and such forth, its really affected my already destroyed sleep pattern (which was already terrible due to years of bar work/partying!)

Above is an artists impression of my sleep pattern

But over time like much of my experience with my bleed/AVM I have begun to form some peace with it. I know I have done everything in my power to keep myself alive, i have barely drank, not headbanged, done much more exercise and followed my doctors orders in terms of my meds and general well-being, so its out of my hands now, and I think that's the core of the issue really if I am honest. I no longer feel my fate is in my own hands, its down to pure dumb luck again but ain't life always been like that really? I guess it has really!

Above is a man who puts his  own survival down to dumb luck as well, I think its his love of whisky, rock and roll and his bass guitar personally (in which case hopefully I will be ok too!)