'Name the different kinds of people,’ said Miss Lupescu. ‘Now.’ ~ Neil Gaiman, The Graveyard Book

What is today's date? Have I forgotten it? It certainly seems like my history and future have merged together. My last blog was on 6 November, after I moved to Woody Point! But right now I feel pretty good, I have a future that is making me feel much better.

I mentioned, last time, that I said farewell to my CBRT team, but I didn't mention the Dolphins Gym which one of my lovely team people introduced me to. This was just "me", and I love it! Every Monday and Wednesday there has been a Heart Care class, which works as well for me looking after my stroke lifetime. The leader has rung people about me, and has given me some warnings about how I shouldn't be trying to get back to where I was. That's frustrating, but she already knows that I go for my next CT in January next year so I have to believe her.

The Heart Care class is set up very well. I do treadmill, exercycle and weights, then join the class for a fun activity and cool down. I have a training paper which I haven't had for years!

The CBRT person who brought me into the gym also joined me a couple of times with a swimming group, Aqua Fit, which I love. I have also been swimming 40 lengths (one km) in the pool. It frustrated me to start with when I only did 20 lengths (half a km) - I used to do 80 (two kms) before my operation, but I will stick with 40 for now. At the moment I am holding off because I have an earache. Very annoying!

I joined some brain aneurysm groups on Facebook. The first one I enjoyed because it was a community group, so able to be joined by people who simply want info. A couple of the others are closed groups, but, for me, that doesn't mean so much information but just a few games. The first one I joined is called Brain Aneurysm Support Australia, started by Maya, and I have been taken on as an admin! I am enjoying it all, as I have made, for myself, one thing to do - every day I post up some information. It is information that probably many people would not know, and is a safety for my language problems.

This is a wonderful group for aneurysm people and for so many other people who should find out information about aneurysms.

A few weeks ago I started my voluntary position with Redcliffe Art Gallery, on Friday mornings, and I enjoy it. This little gallery is different - very small, but so full of all sorts of art stuff, not just paintings. I have two weeks off over Christmas and New Year, then back into it.

So can my life look "normal"? Perhaps that is because so many people don't know what happens after an aneurysm - including a stroke. I found information from www.strokeassociation.org which is (another) USA organisation, but is pretty up about strokes to do with aneurysms. I didn't understand, until very recently, that I risked death with my stroke. Stroke Association wrote:

The [subarachnoid] hemorrhage may also damage the brain directly, usually from bleeding into the brain itself. This is called a “hemorrhagic stroke.” This can lead to: weakness or paralysis of an arm or leg, trouble speaking or understanding language, vision problems and seizures.

I struck trouble speaking my language and I still have it, and I also have some vision problems which are annoying, but I am certain that I am not completely in trouble - I met too many stroke people in North Lakes; read my last blog.

Right now, for my exercise and swimming, writing for BASA, volunteering at RAG and Christmas day which will be spent with my daughter and in-law, I am feeling good. With my CT in January I can only hope it will be okay.

Have a merry Christmas everyone. Wish me luck for the New Year!

Great spirits have always encountered violent opposition from mediocre minds - Albert Einstein

I have never realised that I have mislaid Aneurysm Aphorism. Actually, I never mislaid it, I just simply forgot it. My last blog was written on 1 July 2014, after I was released from BIRU. In the last 3 months I have moved, gotten a different pathology team, discovering my new precinct, going to North Lakes for stroke events, swimming, driving.... so much! And yet I am not fixed.

My surgery resulted in my stroke. I didn't know I'd had a stroke for a few days after ICU. In fact, it was probably when I was locked into BIRU. I, however, became a great patient, with some weekends off and an early (6.5 weeks??) discharge. I continued doing speech and OT pathology at PA Hospital, but it felt like repeated dosage. Probably was. When I moved to Woody Point I was taken into Redcliffe Community Health (my CBRT), and the team there were so much better than the PA people. No offense, just I believe the Redcliffe people had a few less patients than PA, and seemed so much like "people" to me.

The last 3 months has been experiential. At PA Hospital my then-lawyer, while he was waiting for the QIRC appeal, dropped me. I think he thought I was bad future. It certainly meant less money for him. Sad. I am seeing QIRC by myself. Who knows if it will work out? It would be great, but I am certain that there are a whole lot of people with aneurysm and strokes who have been set aside, just like my ex-employer did that in advance. Whoever has brain aneurysm with or without a stroke, people need to understand how this thing is changing lives of many.

There are quite a few of supporters for aneurysms in Australia. The Brain Foundation included some good literature on the aneurysms, but doesn't include the stroke.  The Brain Aneurysm Foundation (US) noted that some strokes are caused by ruptured aneurysms: "Ruptured brain aneurysms account for 3 – 5% of all new strokes." This still doesn't talk about someone like me - an unruptured aneurysm, still leading, in surgery, to my stroke.

After my internment I was giving a couple of Aphasia cards. I had no idea what they were used for, even though the cards did say. After CBRT sending me to North Lake for an event last month, I was feeling a lot more okay to check out my internet. I found Aphasia Australia, which says aphasia is: "Language difficulty caused by damage to the brain." It seems that's sort of where I have been - and still am. You know what? I am not feeling as bad now as I did in hospital, out of hospital, staying at home, and so many things I hated not being able to do.

A couple of weeks ago I got my driver's licence returned, after 7 months. Yes! I felt great! I can drive - I just need to be very careful. I am very aware of my loss of vision out of my car windows if my thoughts moved on, so I have to just watch. Yesterday, at a stroke club coffee also at North Lake, I met up with so many more stroke victims, some of whom are so much worse than me and will probably never drive again. So many of people that I was able to talk to in my usual stroke language! Who am I grateful to? Well, my CBRT team, my new GP - and me. I sometimes feel almost normal, but I think I am well aware of what can play on me. I know, now, that I go to bed very early - sometimes 7.30 - and I sleep most of the night. That is such a very long time since I ever did that. I don't feel bad about it, I know that my body is working hard to try to make me better.

I said goodbye to my CBRT yesterday, but I know that it's not "farewell". I can ring them, I might even get to swim with one or two of them! So far they have set up some new roads for me. I still have contact with my ABIOS person, which I think is essential. Right now I feel like my future is opening, and this is because the support people are always there.

That's not something that "normal" people ever seem to find out.

Do not take life too seriously. You will never get out of it alive. ~ Elbert Hubbard

Well hello people! It has seemed like a long time since I went against my surgery, went backwards, got taken into PA Hospital’s BIRU, and have been locked in for…. 6.5 weeks!  What happened?  Well, where do I start?

On April 22 I went into my surgery, expecting that it would attend well, I’d stay in the PA ward for a few days, and I’d come home. I couldn’t really hear or understand when the ward staff spoke to my daughter about how I was doing. After one week I was shoved into a wheelchair and pushed across the hospital land to BIRU – into the locked ward, locked in with staff, laid in my bed, unloaded with my suitcase. I couldn’t understand what was happening, it seemed seriously and I had no information. I cried, I waiting. The next day I packed myself and went to the locked door to wait.  No-one wanted to let me out; I stood in the hallway by the door. I went into the gym and wait in there, looking at the other door. I sat with my gear for quite a while.

I made it through the door when someone opened it. I pushed past, but I was stopped in the hall outside the locked door. I cried, I refused to move back, I refused to allow any staff lead me into the locked area. My doctor rang my daughter, who, in an hour, arrived to talk to me. She explained to me what was happening, what I was required for. I couldn’t see any truth, but I had to turn back with the staff. My daughter walked back inside with me and kept me accompanied in my room.

I didn’t want to stay on, but I had no choice. It seemed that I had suffered a brain injury at my surgery, and had been taken to BIRU for support. The staff who were supposed to supported me would often be unable to help me as they helped with wheelchairs and bed chairs - not me, we had far too many BIRU clients with too hard injury. I was frustrated in the inability as I couldn’t really feel moving ahead. I couldn’t talk properly, I would repeat my own – unregistered – words and realised that I wasn’t replied in English. I couldn’t use my laptop – it didn’t even work from BIRU – but I felt okay with small FB words.

At the second weekend I was allowed to go home on the Friday afternoon and go back to BIRU on Sunday afternoon. I came home and spend most of the day with my daughter, until I helped her to take my dogs over to her home where they could stay when my home-tenants were due to go to Sydney for a week. I loved them and said goodbye to them and was taken back to my hospital.

I was drawing into different training. I had a SP, a music therapist, a physio, an OT instructor, an instructor to walk me… I was positive, had turned my brain around and began to talk as I could continue to understand and believe, even though I often had to stop and think. I left the next weekend and stayed at my daughters’, and we took my dogs for a drive to meet a friend at Sandgate beach and had a lunch where we could take them.  I got back to the BIRU on Sunday afternoon and followed with my work tech.  I was involved with a music therapist who was a great help with my singing because I had sold my guitar months earlier and had stopped singing. I didn’t know the words of each song, but my MT printed out the words and music of some songs and put them on a USB.  Unfortunately I missed it on Friday as I was headed home to spend the weekend with my friends.

My daughter had left to go to Cairns; she had some special time with her partner’s mother who was very sick. I spent the weekend with my friends, walking my dogs and travelling to one of the houses which was being packed and moved. I got too tired at the end of the day and couldn’t help out in full. I slept, and went back to BIRU on Sunday afternoon.

When my daughter arrived back from Cairns on the Monday morning we had a full meeting – with 7 staff – to talk about my days. I was quite full about finished on the 6^th, instead of the 18^th. I had had a “day end” of 6th June presented to me. I had accepted it, but I had been told by the Social Worker that my day end was 18th June. I disagreed with any longer period and agreed to continue to work to the 6^th of June.

My daughter was not happy, and not entirely at me.  She knew that her mother-in-law in Cairns was dying.  She was going back. I was reluctantly agreed to be let out on 6^th June, and my daughter was going to pick me up on the Friday morning before she drove to the airport from where she was flying to Cairns. It was two weeks, not felt with explanation. I got home, not to feel relieved, but it was necessary.  My friends, who had stayed at my home, watching my dogs, were due to move out on the 7^th, with only a week to pack their stuff from Deb’s original home. I said goodbye to them and was left on my own. 

Coming up - I’ll explain my neurosurgery outpatient meeting, which set me on my future, and my PA therapists another day.

"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!