On 3 July 2013 I was diagnosed with a cerebral aneurysm, which later turned out to be two. This blog is a journey into my brain as I deal to the aneurysms lurking there. Along the way I'm calling on the collective proverbial wisdom and sage advice of some recognised (and maybe a few not-so-recognised) writers for aphorisms which complement my journey.

This is not just a personal journey but also a journey of discovery for everyone who has, had, or knows someone with a cerebral aneurysm.

Tuesday, 18 February 2014

The educated differ from the uneducated as much as the living from the dead. ~ Aristotle

This aphorism expresses perfectly my reason for starting this blog. I felt it I could educate people about just what aneurysms are and the potential they have to affect so much of our lives - not just the patient but every single person in their personal community - I will have achieved my goal.

I recently read a book called "Rebooting my Brain", by Maria Ross (Red Slice Press, Washington, 2012). Subtitled "How a freak aneurysm reframed my life", this book is an excellent read for those wanting more information about the wider repercussions of a ruptured aneurysm. 

Ross was not diagnosed with an aneurysm - she found out by chance when hers nearly killed her in 2008. She had what survivors of ruptured aneurysms know as a "thunderclap" headache - otherwise described as the worst headache you've ever had. She did not seek immediate medical attention, and it was purely luck on her side that, when she collapsed, her husband was at hand to seek help for her.

Following the subarachnoid hemorrhage which lead to urgent surgery, Ross was plagued by secondary issues - hydrocephalus resulting in increased ICP (intra cranial pressure) relieved after the insertion of a shunt, now in her head forever; Terson's Syndrome due to the blood which had leaked from the anuerysm, requiring a vitrectomy to restore sight in one eye; further surgery to reattach a detached retina; many months of physical therapy to recover all senses and learn to walk again; and ongoing issues with cognitive impairment which Ross was not even aware of. Throughout all of this she had the unwavering support of a wide circle of family and friends.

At intervals throughout the book Ross includes general information about particular issues she is facing - "What is a subarachnoid hemmorhage?", p 26; "What's a coil?", p27; "What's the difference between a traumatic and an acquired brain injury?", p37; "What is a shunt?", p 66. Most of this information has been featured in way way or another in my past posts, and is freely available if you care to Google, but it is excellent seeing all this in one publicly available book which may potentially be read by people who have never heard of this stuff before. What you know may save a life. 

Ross' experience is personal to her. Not everyone with a ruptured aneurysm will go through everything she did. Some may not even recover. And whether or not an aneurysm ruptures, the result of brain surgery is an ABI - Acquired Brain Injury. Our brain is not designed to have someone poking around inside it, it fights back. Many survivors, both of ruptures and of preventative surgery, face similar recovery issues such as fatigue, frustration, anger, the realisation that you are different than you were before. Supporters must understand that these behaviours are not put on, they are often not even recognised by the person displaying them, but they are a result of ABI. 

I do count myself amongst the lucky ones who know about our aneurysms early and therefore have a much better idea of how to respond if and when that dreaded thunderclap strikes. I am educated about it, so I hope that gives me the very best chance to be different from the uneducated. The chance to be alive.

I strongly recommend Ross' book to everyone, whether or not you have or know someone with an aneurysm. Be that different, educated person.  

Sunday, 2 February 2014

The secret of man’s being is not only to live, but to have something to live for. ~ Fyodor Mikhailovich Dostoyevsky

214 days since a random CT scan detected my first aneurysm. I am still waiting for surgery. I am still waiting for some form of contact from the neurosurgery department that isn't initiated by me. 

I know I am not the only one in that position. I see it time and again on the FB support pages - people who wait much, much longer than they were told they would. It's frustrating, to say the least. 

Certainly, I could live the rest of my life without mine rupturing, but the fact is I know it's there, it explains a lot of the problems I have which were previously unexplained - irritability, anger, exhaustion, headaches - even if the neurosurgery department claims these are not symptoms related to aneurysms. I beg to differ, and so do many others. The US websites are full of survivor stories where people suffer from the exact same symptoms I do, both before and after surgery.  It's pretty logical, to me. There is a growth in my brain which was never intended to fit in there. I'd be surprised if I didn't have symptoms of some kind.

But there's no point belaboring the fact that hospitals - and, in fact, politicians who allocate funding to hospitals - don't see any urgency about something growing in your brain (they might think differently if it was their brain, but I digress). A while ago I wrote a wee poem which expresses my frustration, because writing makes me feel better. Hope you enjoy. 

This thing in my head 

There’s this thing in my head, my doc says it’s small
But I know it’s there so it doesn’t feel small at all.

It’s lying in wait, it could kill me you know –
Or I could grow old and it’ll all be for show.

There’s this thing in my head but no-one can say
If it’s going to burst or happy to stay.

Two CT scans now, an angiogram soon
I’m marching to the neuro guy’s tune.

There’s this thing in my head, I just want it out.
Do you think they’ll move faster if I stand up and shout?

They gave me a brochure, it didn’t say much
I’ve got heaps questions about mortality and such.

There’s this thing in my head but I’ve made up my mind
It’s there, I can’t change it, whatever they find.

My life is for living, I’ve so much to do
So that thing in my head – I’m ignoring you! 

© Louisa R Aug 2013