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.

Pain is inevitable. Suffering is optional. ~ M. Kathleen Casey

The diagnosis of a medical issue can cause heartache. How we deal with the heartache is often directly related to the support we receive, but support can only come when the supporter has some idea of what's involved. It’s sad and more than a little frustrating that so few people I meet really know anything about brain aneurysms. Sad because brain aneurysms are not a new discovery and frustrating because not even the most prominent brain injury website in Australia, the Brain Foundation, lists aneurysms on their home page, yet in their A-Z of brain disorders they note that “Aneurysms are present in probably 2% or more of adults, and multiple aneurysms occur in more than 10% of these.” 

Let’s do the math. There were 22.68 million people in Aus in 2012. Based on the Australian Bureau of Statistics data which lists 81.1% of the population as working age and above (which they classify as 15+), that is over 18.39 million people. Even allowing for the fact that 15 year olds aren’t usually considered to be adults, that is still potentially more than 300,000 people with one or more brain aneurysms. So why are aneurysms the ‘poor cousins’ of brain issues? Why is there so little information available not only to people diagnosed with BAs, but also their family and supporters?

I won’t just sit back and do nothing when something is affecting me, I want to know details, so I have surfed and Googled and read. The best information website I found is one in the USA, the Brain Aneurysm Foundation. According to this organisation, they are “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.” Yet when my brain aneurysms were diagnosed I was not given any information about this organisation, nor is it listed on the Australian Brain Foundation website. 

Likewise, I was not given information about any support organisations in Australia, and not even any information about the BA page on the Brain Foundation website. Nothing. Zip. Nada. I found two support pages on Facebook, Australian Brain Aneurysm Support and Awareness and Brain Aneurysm Support Australia, which I have mentioned in previous posts but which I will continue to plug because these seem to be the only support groups around. However the fact that neither of them have huge numbers of

followers would indicate – to me, anyway – that the specialists and medical professionals who should have information available, don’t. Anyone diagnosed with a brain aneurysm should be made aware of the existence of these pages. Being told you have an aneurysm is damned scary. To have no support and no-one around you who knows anything is worse. 

 

The medical profession fails us when they ignore the emotional side of a diagnosis. I was failed from the time I was called back to the radiology lab, when no-one thought to either suggest I had a supporter present or even ask me if I wanted a staff nurse with me when I was told. I was failed by my own doctor who, as a GP, knows little about this specialist subject and has no information available. I was failed by my neurosurgeon who had no written information available for me.

 

Photo by Amanda M Hatfield

In fact, since the start of this journey the only information I received from any “professional” source is the information about the cerebral angiogram I received from PA Hospital. Everything else I have found out either by surfing or by discussions with others with aneurysms via the two Facebook support pages.

 

Not good enough, Australia!  300,000 people potentially with aneurysms. Why don’t we know more about these things? Why don’t cerebral aneurysms, which can and do kill, have the same public profile as, say, brain tumours?

 

Message to the neurosurgeons and to the Brain Foundation and anyone else who thinks that aneurysms are not important: I am the one with two of these little suckers in my head. Don’t insinuate I am not important.

 

To me, I am.

Life is 10% what happens to me and 90% how I react to it. ~ Charles R. Swindoll

Tick tick tick... I'm still waiting.

Inside my head is a ticking time bomb. It may be like some of those very old bombs discovered from WWII which landed and never went off. Or it may rupture at any time. I have no way of knowing, and no way of doing anything about it. The ones who can do something about it, who gave me the stats and scared the hell out of me and who advised me to go on the surgery waiting list now seem perfectly content not to have any contact with me, to just let me plod along wondering what will happen first - will I hear from them or will this damned thing rupture?

It has been 150 days today since I was diagnosed. The fact sheet I got when I signed the surgery consent form gave a long and scary list of possible risks of the surgery procedure, including infection, bleeding, heart attack, stroke, brain injury, memory disturbance, epilepsy, numbness, loss of vision, meningitis, coma, death. So it's not your every day cosmetic surgery, this is serious stuff. So why, after signing to go through this life-altering procedure, are we left without any support whatsoever apart from the support we, ourselves, find? How do we react when we don't have the details about what is to happen to us?

Most days I am happy to plod along. I have plenty to keep me occupied, I have a future that I am planning, and a sea change to work through for a whole heap of other reasons. But just occasionally the plod seems to be far too slow and I just want this thing (these things, I keep forgetting there are two in there!) dealt with.

I take heart from survivor stories I read, and conversations and support from the two Facebook support groups I found - Australian Brain Aneurysm Support and Awareness and Brain Aneurysm Support Australia. I spend a lot of time with Dr Google, despite the doomsayers advising not to. Hey, I already know what I have, it's not like I am looking for an ailment to match symptoms. What I want and need is information - sadly lacking in this country unless you go looking for it.

I have met too many people who have no idea of the potential outcomes of a ruptured brain aneurysm. People who are diagnosed with something which may potentially be life threatening have a right to know at least the barest of details, yet even those weren't provided to me when my little sucker was first found. It is my goal in the not too distant future to have at least a basic information sheet in every radiology department, doctor's waiting room and hospital information area. Family and friends of a person diagnosed have a right to know what to do in the case of an emergency situation.

There are many little details that many people don't give a thought to even after diagnosis, because there is no urgency placed on the situation by the medical profession. If they aren't worried, we reason, why should we be? (Funny how the urgency changes relative to the presence of private health cover.)

For your own peace of mind I recommend you do these things:

• Put an ICE (In Case of Emergency) contact in your mobile
• Make or update your will
• Advise friends / family / work colleagues of your diagnosis so they have at least some idea of what to do if an emergency does occur
• Check the beneficiary details on your life insurance
• Make a copy of your diagnosis letter with your ICE details added, to carry with you at all times in case of emergency - if you can't speak for yourself your letter will tell emergency crews what the potential emergency is

This list is not exhaustive, but it can be the little things that you do to help yourself that help you to feel less nervous and unsure.

I don't have control over the 10% of my life that, according to Charles R. Swindoll, happens to me, but I have a lot of control over the 90% that is my reaction.  I will continue to be proactive to try to make the best of my situation, but my patience will only stretch so far. Perhaps my 2014 resolution will be to annoy the crap out of someone until they start seeing that patients are people who deserve the respect of communication - even those of us without private health cover.

So much of control is not authoritative action but mindful waiting. ― Cameron Conaway

When your aneurysm is diagnosed and you sign the form to go on a surgery waitlist, you begin a whole new journey. Only those who have ever been on that journey can fully understand it.

I find it perversely amusing that they call it "elective" surgery, as if you really have a choice about whether or not to potentially save your own life. It's a Catch-22 choice. One wrong move by a surgeon and we may be damaged for life. But too late and it ruptures and we may be damaged for life or dead. So we sign the form and we wait.

And wait. And wait.

I found an extremely good article written in 2009 which so accurately expressed so many of the emotions I feel daily as I sit and wait for my surgery. And wait. And wait.

Anger, irritation, frustration, uncertainty, "existential concerns about fear of mortality and a degree of urgency". Nothing unreasonable, when you think that an aneurysm lurking in your brain can rupture at any time, for any reason, and even the experts can't predict it.

A craniotomy is not minor surgery, no matter how common it becomes for those who perform it. The patient may only ever experience it once - a few may go through it twice - but this is our BRAIN you are drilling into and digging around in, the thing that controls every movement, every thought, every emotion, all our senses, intuition, speech - everything about us. We have a right to be concerned, angry, frustrated, uncertain. We also have a right to expect fair and reasonable treatment and support and communication, yet we know that, often, someone deemed more urgent or someone who has private health cover when we don't will get pushed in ahead of us, and that rankles. No-one wants to feel less urgent, less important, especially when we live daily with the potential of rupture and the known possible outcomes of that.

I have often wished I had never been diagnosed. It would have been so much easier not to have to deal with the emotions, the constant, nagging worry about every headache, every forgotten word, every missed step, the unwelcome taste of blood in my mouth, whether phantom or not. But I can't change what is, so I wait.

And wait. And wait.

Mark Trautwein, diagnosed with AIDS in 1982, wrote a great piece for the New York Times in 2011, acknowledging that while he has spent half his life knowing he might die, "...the constant companionship of plague has taught me that life is about living, not cheating death... I haven’t died on schedule, and I’ve been learning not to live life on one either."

I am trying to live my life as if I don't have that constant threat of rupture and the consequences. I am cramming more into my days than ever before, so I don't have time to worry. On top of all the other crap in my life at the moment, I don't need that as well.

It's damned hard, but I'm still alive. That's worth celebrating.

The causes of events are ever more interesting than the events themselves. ~ Marcus Tullius Cicero

Until very recently I had not heard of a Pipeline Emblisation Device (PED) for intracranial aneurysms, probably because it is a very new procedure and not well known in Australia. According to available information, the PED is specifically for wide-neck aneurysms which are not easily treatable by other methods.  While PEDs have been used in Europe since 2009, the USFDA only gave approval in the USA in April 2011. The FDA page gives very good information on the device and its intended use, however, it was still being called “new” in a December 2012 report in News Medical. EV3, an American company, provides an information booklet specifically on the PED which is excellent information for anyone diagnosed with a wide-necked aneurysm.

In Australia, while the PED procedure is being used, the Department of Health website notes it is still awaiting the draft DAP (Decision Analytical Protocol) from the “applicant”, whoever that may be. Certainly, that seems to be a lengthy process as evidenced by the Department of Health information on “Deadlines for a proposed decision analytical protocol”. Coviden, a US provider of the devices in Australia, only published final testing results in the US in June 2013, noting that “Investigators compared the Pipeline device to historical controls because no other blood flow diverting devices are available in the U.S. Effectiveness of stents has not been proven to FDA standards; and outcomes for surgical or other endovascular treatments have been suboptimal.” It is a little scary to read that in SA the Therapeutic Goods Administration (TGA) has issued a safety alert (although not a recall) for monitoring of aneurysms treated with PEDs in persons in aged care, a reminder that this procedure is still very new.

Overall, though, if you have a wide-necked aneurysm and are faced with the fact that traditional methods don’t historically work well with those, the PED is a light at the end of a rather bleak tunnel.

The US-based Brain Aneurysm Foundation has an exceptional booklet available on all aspects of aneurysms. In the absence of a similar resources in Australia, perhaps this booklet should be made freely available to every person in Australia who is diagnosed with a brain aneurysm, along with a list of Australian support resources, so others like me do not have to struggle to find the information which we so desperately need.