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, 29 October 2013

Be kind, for everyone you meet is fighting a hard battle. ~ Plato

Good thought, Plato.  Of course, some people are fighting harder battles than others, but it's all relative really.  Who is to say that my battles are more or less important than someone elses?  And yet, that often seems to be the case, in my perception.  And perception and perspective are all we really have to base our feelings on.

So this post focuses on my emotions, because, let's face it - when you are thrown such a huge curve ball in life, there are definitely emotions attached.

In my previous posts I mentioned some of what I have felt since first diagnosis - numbness, anger, self-pity, acceptance.  I'd like to put each of those emotions and many others that have flitted through me in the past two months into the context of my life at this time.

It's been a pretty crap year all round - marriage breakup in January, moved out of the marital home in April, expensive car repairs also in April, so the aneurysms were just another crap thing I had to deal with.

Numbness was my first emotion.  When the diagnosis was sprung on me, with no support person offered, it was like a punch to the solar plexus.  Certainly, I had little wind left in me as I sobbed inside the CT scanner.  This is a huge failing of the health system.  Maybe, to them, an aneurysm is a daily occurrence - to other people, it's all sorts of things, mostly bad.  To me, it was a bolt out of the blue that had/has the potential to change my life. 

Graphic: https://sites.google.com/site/newalbanytheatreboosters
Anger followed close on the heels of numbness.  Anger that my body was letting me down yet again. Anger that the hospital system was treating me as if this was nothing unusual - to them, it's not, but to me it most certainly is. I'm a great believer in keeping people in the loop when something directly affects them.

Fear closely followed anger.  This was my head, FFS. Something foreign in my head that I knew very little about and could do even less about. I resolved much of my anger and fear by Googling information.  If I couldn't get information and empathy from the health system - including my own doctor - I would do exactly what they recommended I did not do, and look it up.  The sites I went to are all very reputable and specialise in brain aneurysms.  What was not to believe? As it happened, subsequent information from my neurosurgeon confirmed what I had Googled anyway. By knowing more about aneurysms in general, even though there are no restrictions placed on me, I have been able to take steps to ensure that, should the worst happen and the little MF rupture, I have the best possible chance of survival.  For that reason I carry with me at all times the referral letter which describes my condition, so in the event that an ambulance is necessary they will know what is required for treatment.  My phone has my ICE (In Case of Emergency) details, and my insurance details are up to date. When I know that rupture can lead to death in far too many cases because of lack of awareness of a pre-existing aneurysm, why wouldn't I take those steps?

Once I had found out enough information to satisfy my natural nosiness, I felt acceptance - a great calm come over me.  I knew there was absolutely nothing I could do about this situation, the damned thing was there in my head and wasn't going anywhere, so just deal with it.  This short time of calm was the best I have felt since the start of all this.  It didn't last long enough, not from wavering acceptance but due to ongoing external pressures.

More anger, unrelated to the actual aneurysms but certainly related to my overall stress levels, arose due to some employment issues that cropped up not long after my angiogram.  At this stage I must mention the gratitude I felt for the PA Hospital staff who performed the angiogram and looked after me in recovery.  Very professional, very empathetic - and good comedians to boot. 

I suddenly found myself, for reasons I won't go into, unemployed.  The day after that bombshell I met again with the neurosurgeon, to be told they had detected a second aneurysm, and the first one was bigger than they thought.  Disbelief, acceptance, uncertainty, in quick succession.  Resignation was the emotion of moment when I signed the surgery consent form.  Yes, I could have decided against it, but realistically, was there a choice?  Live with a ticking timebomb which may or may not go off in my lifetime, or get rid of the sod(s) as soon as possible.  No contest.

Being on a surgery waitlist is fraught with its own problems, as far as my employment is concerned.  Who would want to employ someone who might just need 2-3 months off at any time?  Yet I couldn't not tell a prospective employer about it - non-disclosure could cost me my job, if I got one. 

I approached a job agency in my suburb, not realising they were connected to Centrelink.  In order to use them, I was told, I had to apply to Centrelink.  Off I toddled.  Big mistake - HUGE mistake.  I am a Kiwi.  I have not lived here for 10 years, even though I have worked since pretty much the day I arrived.  I am not entitled to any sort of assistance whatsoever. The woman who told me this had no empathy at all, didn't care that by then I was sobbing my eyes out, pretty much affirmed that they wouldn't help me even if I was to become homeless.  Wow, lots of big emotions, one after the other - embarrassment (that I was crying in public), disbelief (that someone could be so cold), anger (that I have paid taxes for 8 years and am not entitled to anything, even though Aussies can go to NZ and get assistance from Day One - but that's another blog).  I felt very lost and alone, even though I have the most amazing group of friends and family.

Those feelings weren't helped when I contacted the hospital to see if they could give me any indication of timeframes for surgery. When I had signed my consent form, I was given to believe that the timing would be a matter of weeks.  Now I was told it was probably months.  Now I felt resentment - at a stupid system that can move people with private health cover ahead of those without, a system that still doesn't recognise or acknowledge that something like an aneurysm, to the person who has been diagnosed with one, is like an invader that you just want rid of.  No emotional support, no empathy.

People keep telling me how strong and resilient I am.  I am not sure about that - maybe I am just dumb enough to keep getting back up when things knee-cap me, because it seems every time I get up, I get knee-capped again.  Anyway, I bounced back.  As you do, if you want to stay sane.  I decided to update my blogs (I have three) and start looking for freelance writing work. I am very privileged to have met a wonderful young woman who is the franchisee of TEDxSouthBankWomen.  She and her family have been very supportive of me all year, and when I saw her very recently she suggested a few sites I could look at and a few writers I could follow, and recommended I get on Twitter - which I had avoided until then.  I took her advice.

Once again I am back to acceptance, and am feeling a lot more upbeat about my whole situation.  I know that the emotional cycle will continue, probably right through until I finally get to surgery, if not beyond, but I have the information and support I need to fight it. And I'm doing okay at that so far, with a lot of love and support from wonderful family and friends.

Wednesday, 23 October 2013

We are more closely connected to the invisible than to the visible. ~ Novalis

The aphorism I chose for this post so closely described the events of the 2 September, when I went back to the neurosurgery department for the results of my angiogram.

Seems I had not just one, but two aneurysms.  And the main aneurysm was larger than they had first detected.  I guess that's exactly why they do the angiogram, it gives a much more detailed picture of the situation.

The registrar discussed the options available for treatment.  Basically, there are two main methods - coiling or clipping.  For a saccular aneurysm such as mine, clipping is the usual method.  This is an invasive procedure which requires a craniotomy - brain surgery.  The alternative, coiling, uses a procedure very similar to the angiogram (see previous post), and platinum coils are fed into the aneurysm via a catheter. 

In my case, with saccular aneursyms, they would be looking at clipping.  The Brain Foundation website (USA) has some very good information about this procedure, which is probably just as well because it looks and sounds damned scary!  This is my brain they will be drilling into!

As with any invasive surgery, there are risks.  The registrar walked me through it all, and gave me a copy of the Consent Information form for "Craniotomy and Clipping of Cerebral Aneurysm". The principle risks include infection, bleeding, heart attack, stroke, long term brain injury, memory disturbance, fluid leakage around the surgery area which might necessitate further surgery, epilepsy, numbness or pins and needles, loss of vision, meningitis, coma and death.


Ultimately the decision was mine, but I had to weigh the options.  During my first registrar's appointment I had been told that I fit the bill nicely for surgery - right sex, age, location and type of aneurysm.  I could do nothing and never have a problem. But then again, it could rupture and I could lose vision and speech or possibly die.  They would recommend surgery. 

Some decision.

I signed the consent form and went on the waiting list for surgery. 

What we anticipate seldom occurs; what we least expect generally happens. ~ Benjamin Disraeli

When you first start on a journey of discovery into aneurysms, you really have no idea of what to expect.  You may have some knowledge of aneurysms - especially if you have known someone with one (or two, or three), but considering the percentage that do rupture even before one is detected (see previous post), it's probable that the person sitting next to you with one of these little MFs in their head (or elsewhere) knows as much - or as little - about them as you do.  In fact, they quite probably don't even know they have one, and won't until that headache or CT scan or general dis-ease changes their life.

The next step in my journey was a cerebral angiogram.  Having previously received very little information from anyone, I now got quite some fairly good, if basic, information from PA Hospital regarding this upcoming procedure.  The Diagnostic Radiology department sent me a patient information guide which told me this was a "minimally invasive procedure" which is a day procedure only (i.e. no overnight required), required more stuff poked into my veins and arteries, and after which I would need to lie flat for a couple of hours, would not be permitted to drive home and should have someone stay with me overnight. 

Because I am an inquisitive (read: nosey) person, I went back to Dr Google to get more information - and, of course, to be able to share it with all you lovely readers.

That search led me initially to Dr Wiki, where I was informed that a catheter is inserted into a main artery (in my case it would be into the femoral artery in my groin) and "threaded through the circulatory system to the carotid artery, where a contrast agent is injected. A series of radiographs are taken as the contrast agent spreads through the brain's arterial system, then a second series as it reaches the venous system." 

The American National Health Institutes website gave a much more detailed description, including some matters - anaesthetic, cleaning - which would become very relevant to me during the procedure.

On 23 August I duly rocked up to the hospital, knowing a bit more about the procedure but not really sure what to expect for me personally.  First step was a blood test.  At 7am there were a surprising number of people already waiting, and many of those, it seems, were cancer patients who were regulars there. 

I very quickly found out that the clinic takes people strictly in the order of arrival, and "arrival" is determined not by when you actually get there, but by when the receptionist gets your appointment letter to check off.  If the gate of the clinic is down, as it was, you hang your appointment letter on the gate and she will retrieve it and mark you off.  Three or four people who arrived, physically, after me were seen before me because they knew the system while I sat there with my appointment letter in my hot little hand until I twigged.  Not fair PA!

Onwards to the Diagnostic Radiology department ("Follow the yellow brick road"... okay, not quite, but there are painted lines on the floor) where I was only the second person in the waiting room.  I only had a short wait before a nurse came to insert a canula into my hand.  I was directed to the changing rooms and given one of those beautiful hospital gowns which reveals so much, and a basket for my clothes, and taken to another waiting area. 

Again, the wait there was short, and I was laid on a gurney and wheeled into the procedure room, where I was transferred to the flatbed of the imaging equipment.  It was cold - very cold - which, given the amount of massively expensive-looking equipment in there, was probably essential.

The assistants began sticking patches all over me to which leads were attached so I could be monitored on the ECG throughout the procedure.  My lower abdomen and groin area was swabbed with disinfectant - also very cold - and I began visibly shivering.  The wonderful lab assistants laid a heated blanket over me and I can't remember a time when I was so grateful for immediate warmth!

The anaethetist talked me through what he would be doing in order to numb the area where the catheter would be inserted.  He injected me and we waited, but I still had feeling so he repeated the process.  And I still had feeling.  So a secondary anaesthetic was given intravenously via the canula in my hand. 

When the cut was first made for the catheter I didn't feel the incision, but what I did feel was a spurt - not just a dribble, but a spurt - of blood down between my legs.  I'm talking "fountain" spurt.  That is one heck of a freaky feeling, and you know that they are playing with a main artery and if they mess up, even just a little, you could bleed out!  They were too good for that, of course - hence I am still here to report!

I didn't feel the catheter being inserted, but the staff talked me through the entire procedure as the x-rays followed it up my body.  Dye was inserted via the canula in my hand, and the huge machine around me took pictures from every angle.

Once the imaging was done the catheter was removed, and a nurse applied pressure to the incision site for what seemed like ages to stop the bleeding.  When they were happy that all was okay, I was wheeled out of the procedure room and into recovery, where I would now need to lie still and flat for 2 hours, and then wait potentially another 4 hours before I could go home.

My recovery time was a lot less than that though.  Apparently they were using a new form of "sealant" on the wound which literally halved the recovery time.  After an hour the nurses were very pleased with the recovery progress so I was allowed to sit up enough that I could have a coffee (even instant coffee is to die for when you have fasted prior to a procedure!) and a sandwich a la breakfast. 

Three hours after the procedure the staff rang my ride home and told him to come get me.

I was supposed to have someone stay with me overnight, but since the only option at that stage was my ex, we discussed it and I felt fine so I told him I didn't need him to stay.   I had an uneventful night and slept like a baby!

Now to wait for the results.

Saturday, 12 October 2013

A single event can awaken within us a stranger totally unknown to us. To live is to be slowly born. ~ Antoine de Saint-Exupery

My daughter came with me to the specialist's appointment on 6 August.  I wanted someone else to hear what they had to say, so I knew I wouldn't be over-reacting when I passed the info along the chain.  Over-reacting probably isn't a consideration in a circumstance like this.  When you have something so unknown diagnosed, you simply don't know how to react.

We were pretty much the only ones in the waiting from, which really surprised me considering this is the public hospital system.  Still, it worked definitely in my favour because I was quite calm when we got into the NS Registrar's office.  He was friendly and informative, and laid out the usual situation regarding cerebral aneurysms in a person my age.  Turns out that - contrary to what society thinks - 56 is "young" for an aneurysm, hence they prefer to treat those over 5mm in order to give the best recovery advantage.  (My daughter thought it was highly amusing that I was considered "young"!)

There were plenty of not-so-good stats as well, confirming to a large degree what I had already Googled.  The odds of a brain aneurysm rupturing may not be high, but that is more because they don't know enough about the cause of them at this time, despite such advanced medical treatment available.  The odds increase with age, but size is not necessarily a factor - some very small ones can and have
ruptured.  This is the bit I found the scariest:

  • 20% of those with a rupture will not make it to a hospital.
  • A further 20% will make it there but die before they are diagnosed.
  • Of the remaining 60%, more than half will have some residual detrimental effects - such as loss of vision, speech, etc (similar to stroke).
  • Only 1 in 5 whose aneurysm has ruptured will have no adverse effects at all.
Not good survival odds, but I have no control over them.

I asked about restrictions - could I fly, specifically, as I had a trip back to visit friends in NZ booked.  No restrictions, he said - again, for the simple reason that they don't know enough about why some rupture and many don't.  No point in placing restrictions on something that you have no idea will ever happen.

So, the next stage is a four-vessel angiogram to "better clarify the aneurysm".

Time to ask Dr Google about that procedure!

Anatomy is destiny. ~ Sigmund Freud

The longer I live, the more I believe that to know at least a bit about how our bodies work, the better chance we have of helping ourselves to at least stay aware of changes that may ultimately affect our quality of life.  So when I ran smack into a block wall for support and guidance about my aneurysm, I took the plunge and began surfing.  The internet, that is.

Picture from www..springerimages.com
Okay.  The letter of referral from my GP to the hospital said I had an "8mm saccular aneurysm arising from M1 component of the left middle cerebral artery".  So, what is a saccular aneurysm, why did my GP consider 8mm to be "small", and what is the M1 blah blah?  The most helpful site I found at this time was an American site, The Brain Aneurysm Foundation.

I knew what an aneurysm was, I just didn't realise there were two main types, saccular and fusiform.  A saccular aneurysm is otherwise known as a "berry" aneurysm - because that's what it looks like - and is the most common type of cerebral aneurysm. My GP called my aneurysm "small" because there are only really two descriptions: small is anything under 2cm, giant is over that.  So while she called it small, that didn't mean it was any less potentially life threatening.  Some of the statistics on the BAF website were just plain scary, but they are factual. 

For instance:

  • Ruptured brain aneurysms are fatal in about 40% of cases. Of those who survive, about 66% suffer some permanent neurological deficit.
  • 4 out of 7 people who recover from a ruptured brain aneurysm will have disabilities.
  • Brain aneurysms are most prevalent in people ages 35 - 60, but can occur in children as well. The median age when aneurysmal hemorrhagic stroke occurs is 50 years old and there are typically no warning signs. Most aneurysms develop after the age of 40. 
  • Women, more than men, suffer from brain aneurysms at a ratio of 3:2. 
  • 10 – 15% of patients diagnosed with a brain aneurysm will harbor more than one aneurysm.
  • Ruptured brain aneurysms account for 3 – 5% of all new strokes.

Right.  So I'm of the age group and sex for whom aneurysms are most prevalent.  Nice to know.  Can't change those facts, so just have to work with them.  The information says that high blood pressure is a risk factor.  I am so very pleased that I have stayed fit for a long time and have wonderfully normal blood pressure.

The American Association of Neurological surgeons was another resource.

Unfortunately, the one Australian support site I found at this time on the general internet seemed to be a closed group, with "Coming soon" on their info page.  Not much help!  I did find a support page on Facebook, which has been of help to me from the perspective of sharing and caring.

On a personal level, I received a great amount of empathy and support from family, friends and work colleagues.  I had been devastated on first diagnosis, but about a week later, after many sleepless hours, countless tears and feeling very sorry for myself, I had what could only be described as an epiphany and a great calm washed over me.  This was a situation about which I could do absolutely nothing, so acceptance was essential for my emotional wellbeing. 

I received notification from PA Hospital that I was scheduled to see the Department of Neurosurgery on 6 August.  Accept it and carry on, nothing further to be done at this stage.

There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is. I believe in the latter. ~ Albert Einstein

Love this quote from Albert.  It became even more relevant to me on 3 July 2013.

I'd been getting earaches for a while - to the extent that I couldn't sleep for the pain.  I'd bugged my GP a number of times, so she finally decided I should go for a CT scan to see if they could find the reason.

I dutifully attended, and the process was quick and simple.  I'd only just driven away from the radiology lab when I got a phone call... could I please return?  No reason to sweat, they probably just forgot something. 

And then everything changed.

As soon as I arrived back I was ushered into a consulting room where the radiologist advised me that, while they hadn't found anything that could be causing the earache, they had found something else. An aneurysm.  In my brain.  They would like to do another CT scan, this time with dye, to confirm it.

I went numb.  It was certainly not an ideal way to break it to me - no support person there, no real details - but I stripped my top half again and lay on the gurney and shook my head as the radiologist's assistant asked me if I was allergic to anything. No, nothing except shiitake mushrooms - but that's another story.  He inserted a canula into my arm and explained how the dye would allow a clearer picture of the approximate size and location of the aneurysm.

As the gurney moved into the CT machine, I felt the emotions hit.  I knew I had to be still, but I couldn't stop the tears flowing.  I cried silently through the whole process.  The radiologist talked me through it, telling me when he was releasing the dye, which felt like a flow of warmth through my whole body - and particularly in my groin.  It almost felt like I'd wet myself - which I thankfully hadn't.

It didn't take too long and I was dressed and back in the waiting room again.  Seemed like the longest part of the process was waiting for the pictures and letter to take to my doctor.  See her today, they suggested.  I made an appointment for that afternoon and left with my pictures clutched in my hot little hand.

I drove back to work in a fog, which I don't think I moved out of for days.  I dutifully went to the doctor later in the afternoon, and she had already received an email copy of the letter and the pictures.  She immediately wrote a referral letter to PA Hospital, which has a highly respected neurological department, told me that my aneurysm was "small" and it was possible nothing would be done about it.  I was ever so grateful for her empathy and insights - not. I was not provided with any further information, no support contacts, nothing at all that would give me any indication whatsoever of what I might expect. That was my first taste of how certain members of the medical profession seem to care so little about what, to the sufferer, may potentially be a life threatening situation.  I put it down to the fact that she is not expert in the field, and resolved to do some research of my own.

Many people I have subsequently spoken to have advised against Dr Google, but seriously, when you are thrown such a huge curve ball and no one can give you information, where else do you turn?

So it began.