"I have learned over the years that when one's mind is made up, this diminishes fear; knowing what must be done does away with fear." ~ Rosa Parks

When I looked for an aphorism for this post there were many I could have used, but this one from activist Rosa Parks seemed to express my thoughts so well. When my aneurysm was diagnosed on 2 July 2013, I felt like my world had been turned upside down. With so little information provided to me by the local "experts", I decided to do my own research, and this blog came into being. I faced my fear by learning about it.

After so long waiting, I had pretty much accepted that I was not considered urgent and my case would be dealt with "in due course". I'd reached a kind of resignation, and carried on with life which included getting very tired, constant mood changes and headaches, none of which, according to the experts, were related to my aneurysm. My research (if you've followed this blog at all you'll know this has been covered in previous posts) said it could have been, but there was nothing I could do about it. Those who say that you should take control of your own life and not leave it to fate have obviously never had a brain aneurysm (or any other life threatening illness). When you know about your aneurysm, resignation and acceptance are the only options. When you don't know, fate always has the upper hand. 

In February and March this year Queensland Government began a long-winded stoush with senior doctors over their contracts. Amongst those who were, apparently, resigning if the contract issue wasn't resolved were neurosurgeons and anesthetists, both of which were - obviously - pretty essential for my surgery. Come 1 July, it was reported, much of the scheduled elective surgery throughout the public hospital system would cease. I was mightily ticked off at the Queensland Government's attitude. To me, it seemed the system was archaic enough as it is and pushing doctors up against a wall and threatening their jobs was too much. I sure didn't want some hastily-hired locum from overseas cutting into my head! Doctors work long hours and do essential and wonderful work, and how dare Campbell Newman make threats to them and them reward himself with a $70,000 pay increase?? So this time I had to accept resignation that my surgery might not happen at all, or at least not in the foreseeable future.

This week everything changed. I finally got my call to surgery on Monday, 272 days after diagnosis. Did that change my mindset? Hell yes! 272 days of being resigned to waiting, and possibly not even getting there if the doctor's contract issue wasn't resolved. 272 days of knowing that, in the public system, I was not important. 272 days of realising that the very same surgeon who would eventually operate on me was operating, in his private practice, on people who had not waited as long but who had insurance.

(I am well aware that insurance doesn't cover everything - a friend made the mistake of deciding to have hers done on her insurance instead of through public, and has paid through the nose for the "privilege". Insurance is really only of any use in situations like that if you have 100% cover of 100% of costs.)

And now, after 272 days, I had a date, and it was only 3 weeks away! So, I could approach this like any other day, write it into my calendar and just go with the flow, but this is brain surgery, a little bit different to "any other day". I believe that most of the people who do have problems post-surgery are those who had subarachnoid haemorrhages pre-surgery. I have been lucky not to have gone through that, and I have great empathy with those I have met through Facebook support pages and various websites who have had, and still have, problems in their recovery due to SAH. I know that the large majority of people who have this type of surgery come out the other side with no problems. But this is brain surgery! A surgeon is going to cut my skull open and dig around inside my brain! Am I scared? Hell yes!

In my 20s I tested for and was accepted into Mensa, a worldwide society open to people who score at the 98th percentile or higher on a standardized, supervised IQ or other approved intelligence test. My 'intelligence' is comprehension and language based. I have the ability to cut through the crap and understand a situation a lot faster than many others, to ask questions that help my comprehension, and to discuss it logically. Alzheimers has always been something I have been scared of coming up against in my senior years, and brain surgery can leave a patient with effects similar to Alzheimers, even if only for a short time during recovery. It is the loss of my language ability that scares me more than anything else I can imagine, more even than pain - and I'm a complete wuss when it comes to pain. 

I can't imagine not understanding single words let alone a whole question. I can't imagine not remembering the meaning of a word or how it is used in a sentence or what article it represents. I am scared of memory loss, short or long term. I am scared of forgetting who I am. I am scared of forgetting people I love.

I have spent this week psyching myself up for this. I have some wonderful supporters and have had some good discussions with people I know who have been through similar surgery, but what they felt does not necessarily equate with what I am feeling. Everyone is different. Rosa Parks said "knowing what must be done does away with fear". I don't think it does away with it entirely, but I am trying, really trying, to be positive about this. 

17 days and counting down. See you on the other side.

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.  

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

 

 

Links and resources

This is the first – and only – page that doesn't lead with an aphorism, because I want it to be easily found if someone needs it. I know that, like me, many people have found the lack of information available from the so-called “professionals” to be disconcerting. Since I started this blog I have found many resources that I have linked to in various posts. I thought it was time to bring them all together to make a handy click-link resource page. Bookmark the page if it will be of help to you for your own support, or for education and awareness of your supporters. 

Acquired Brain Injury - “An acquired brain injury, or ABI, is damage to the brain that was not present at birth and is non-progressive.” This link leads to a manual produced by the Brain Injury Network and provides some pretty comprehensive information about ABIs.  It’s a great site, and much of the content was developed by survivors of Acquired Brain Injury. 

American Association of Neurological surgeons This site has some very good information on risk factors and warning signs/symptoms. It also includes a list of some famous people who either died from or who have survived aneurysms. 

Australian Brain Aneurysm Support and Awareness and Brain Aneurysm Support Australia, Australian Facebook support sites for survivors and supporters of those in Australia diagnosed with annies. 

Brain Aneurysm Foundation “the world's only nonprofit organization solely dedicated to providing critical awareness, education, support and research funding to reduce the incidence of brain aneurysm ruptures.” – USA. Excellent resource which is dedicated specifically to aneurysms which doesn’t just lose them in amongst all the other medical information for brain related issues. 

Brain Foundation Australian site which, like others, includes aneurysms amongst many other brain disorders. It does, however, have a link to latest Australian research papers on aneurysms. 

Brain Injury Australia Good website which explains the difference between an Acquired Brain Injury (ABI) and genetic brain disorders. 

Brainline information on Traumatic Brain Injury (TBI). Whilst an aneurysm is an ABI, it can also be a TBI if it ruptures. 

EV3 information booklet on Pipeline Embolism Devices (PED). PEDs are a reasonable recent procedure. See also Medscape for further information on Pipeline Embolism Devices (PED), specifically for wide-neck aneurysms – both USA.

National Institute of Health (NIH) detailed description about cerebral angiogram procedure - USA 

National Institute of Health article on waiting for surgery from the patient’s perspective - USA 

The Aneurysm and AVM Foundation The TAAF’s Mission Statement: “Dedicated to bettering the lives, support networks, and medical care of those affected by aneurysm and other types of vascular malformation of the brain.” USA site which is big on research fundraising.

Also two little videos on the Brain Aneurysm Support Australia FB page: http://www.youtube.com/watch?v=nn9TNJsSpj4 – very good resource to show to family, friends and even workmates so they know what you are facing and http://www.youtube.com/watch?v=jd5VQTS096E – about PEDs.

Every little helps. If you have some resources which are not mentioned here, please let me know so I can include them!

Do not regret growing old; many are denied the privilege. ~ Ogden Nash

Diagnosis. Good thing or bad thing? How many people ever actually know they are living with a potentially loaded gun somewhere in their body? When you are told, what are you supposed to feel and how does it change your life? Because no matter how upbeat you are about what your future may be, it does change.

Aneurysms are an Acquired Brain Injury. According to the Acquired Brain Injury (ABI) website, “An acquired brain injury, or ABI, is damage to the brain that was not present at birth and is non-progressive.” ABIs are either non-traumatic, or may be the result of forceful contact to the head. For further information on Traumatic Brain Injury (TBI) see the Brainline website and Brain Injury Australia.

Regardless of the reason for the rupture of an aneurysm, for many people – those who survive (see October 2013 post “Anatomy is Destiny”) – life may never be the same again. Author David Grant, a TBI survivor, notes that “Brain injury is … the last thing you ever think about until it’s the only thing you think about.”

So when you already know that the potential is there, life may have changed already.  For those diagnosed pre-rupture, the diagnosis is the life changer and thoughts of your aneurysm accompany everything you do. Many of the stories recounted on the Brainline website are from people whose TBI was the result of an accident or illness, or who may have had an aneurysm or tumour and not known about it until too late. But you don’t need to actually have a traumatic event happen to make changes, you just need to know that the potential is there and is very real.

When you do know about it in time, what do you do?  Is there anything you can do? Personally, I decided to live better.  I have set some goals into 2014:

• started swimming again after many years – goal: swimming in the Vanuatu Open Water Swim in June 2014;
• re-ignited my passion for writing – goal: making an income from it in the not-too-distant future – signed up for a "Gunnas Writing Masterclass" with Catherine Deveny  in March 2014 to boost my desire and confidence;
• signed up as a volunteer with a number of organisations – goal: keep myself occupied and help organisations that appeal to my interests. My choices include What's Your Impact as a researcher to bring attention to how our personal actions and activities affect climate change, Eyeline Magazine as editorial assistant, and front of house at La Boite Theatre.

I will also continue the campaigns I am already involved in:

• raising awareness of brain aneurysms in the face of a dearth of information on Australian websites and the lack of publicly available resources in medical centres and hospitals
• fighting to eliminate violence against women through activities with V-Day, One Billion Rising and Say No
• support for the campaign to save the Great Barrier Reef from destruction by mining interests
• raising awareness of the destruction of the habitat of orang-utans and other endangered species for the production of palm oil

There are virtually no restrictions on my life – except that I should, of course, avoid undue stress (but shouldn’t we all if we can?). The neurosurgery registrar pointed out that they can’t restrict anything when too little is known about why and when an aneurysm might rupture to warrant restrictions. Perhaps that is why, for me, knowing about it is an advantage. I can plan to do things that I might otherwise have put off or not considered.  I can plan to make the very best of my time, regardless of any “what if”. And I can plan for the worst, even if the worst never happens.

Someone who doesn’t know about their aneurysm can’t do that.

I don’t regret getting old. I just regret that I didn’t have the incentive to live a better life long before now.  How strange that it took the diagnosis of a cerebral aneurysm to enable that.

You never know how strong you are until being strong is the only choice you have. – Cayla Mills

Today I received a letter from the hospital asking if I wanted to be placed on the “short notice” wait list.  That means, apparently, that I could be called with minimal notice (I elected 48 hours so I have time to organise care for my dogs). I am very hopeful that this letter is a turning point which might mean I am closer to surgery.

Being the Curious George that I am, I googled “short notice surgery wait list”, and found an interesting list of documents from the various state health areas on surgery wait lists in general.

The "Elective Surgery Services Implementation Standard" from Queensland Health is 18 pages, and lays out the procedures for admitting a patient to a hospital surgery wait list, including categorisation of the condition for which the surgery is to be scheduled.

• Category 1: Admission within 30 days desirable for a condition that has the potential to deteriorate quickly to the point that it may become an emergency.
• Category 2: Admission within 90 days desirable for a condition causing some pain, dysfunction, or disability but which is not likely to deteriorate quickly or become an emergency.
•  Category 3: Admission at some time in the future acceptable for a condition causing minimal or no pain, dysfunction or disability, which is unlikely to deteriorate quickly and which does not have the potential to become an emergency. Admission for Category 3 patients is desirable within 365 days.

I don’t know what category I was assigned, but I do know that as at today it’s 169 days since my aneurysm was found and 108 days since I saw the neurosurgery Registrar.  So I’m past the suggested scheduling dates for both Category 1 and Category 2, which, to my simple mind, means the hospital – or at least, neurosurgery – does not consider an aneurysm has “the potential to become an emergency”.

I find this particularly interesting. I think any aneurysm has the potential to rupture, and I have read survivor stories from people whose aneurysms ruptured at only 5mm.  My main one is just less than 10mm. I have previously posted about the stats and potential consequences if a rupture occurs. For example, “Ruptured brain aneurysms are fatal in about 40% of cases. Of those who survive, about 66% suffer some permanent neurological deficit.” I would think that would constitute an emergency. Based on this, and what the neurosurgery Registrar told me about the size of my main aneurysm and my age, I would therefore consider my aneurysm as "a condition that has the potential to deteriorate quickly to the point that it may become an emergency".

Perhaps the reason aneurysms are not generally treated as a priority category has a lot to do with what I wrote about in my last post, and also what the Registrar told me back in September – that they still don’t know enough about these little things. Which in some ways makes it worse, because it makes those of us on surgery wait lists into guinea pigs. The researchers find out more about aneurysms by examining those whose aneurysms rupture – they had to have got the statistics from somewhere. Sceptical? Absolutely. This little sucker is inside my brain and no-one in the medical profession seems to think that’s urgent. Or is that just because I have no private health cover? (Which is a con anyway, because a friend who had her surgery under private cover still ended up forking out literally thousands for the whole caboodle from her pre-op diagnosis to her post-op care.)

Or am I actually Category 1, but one of many caught up in a health system that is desperately short of money because politicians, who no doubt have full comprehensive top-of-the-range health cover, never see what happens at the bottom of the wait lists? Perhaps I’d best get off that particular subject… for now.

My Christmas pressie to you, Mr Neurosurgeon and Hospital. Being that it’s only days until Christmas, I’ll give you the benefit of the doubt and forget about wait lists for a couple of weeks. Enjoy it while you can and I’ll see you in 2014.