Acromegaly, the Shrek Condition – My story. [Part 3: Brain Injury – Dark Cloud, Silver Lining]

My apologies for the delay in writing this update. As you’ll see, its quite a difficult post  to write, and this is my third attempt, after aborting and doing something less distressful. Like killing some pigs on Angry Birds. The first part is based upon my understanding of what happened, and the remainder  is based upon my recollection.

In my previous post, we had got to the stage where « unidentified soft tissue » was discovered on MRI scans, in approximately the same position where I had those additional tumour cells scraped from the cell wall of my Internal Right Carotid Artery next to the Pituitary fossa.  And I had just gone in for exploratory surgery on that cell wall, as we thought it was likely that growth-hormone secreting tumour cells had remained in that location, and to remove them if possible.

I was put under the general anaesthetic, the medicinal cocaine was administered and the surgeons went into the brain through my nose. And as he started scraping the cell wall, it burst. It wasn’t tumour. It was something much worse.

« What the f*ck », is what I suspect was said. Quite loudly.  Surgery aborted – now we’re into a critical situation, and my life was in danger.

It turns out that the « unidentified soft tissue » was, or a the very least included, an aneurysm. It ruptured, causing a massive haemorrhage. Approximately 4.5 litres worth,  to be precise, which is quite a large amount given the human body contains 5 litres of blood. The anesthesiologist did what he could to keep me under, lowering my blood pressure to try to reduce the loss; whilst the hospital urgently sourced and transfused replacement blood to replace the stuff that was lost into my brain and out of my head. They also packed my brain with synthetic material  to  « soak up » the bleed, whilst calling an ambulance was called to take me to a hospital equipped for such emergencies.

It turns out that, literally across the road at Queensland Health’s Gold Coast Hospital, one of Australia’s leading Brain Surgeons specialising in dealing with aneurysms, was on duty. And he, Dr Hal Rice, was on a coffee break. And had a spare operating theatre. How bloody lucky was I?

I was transferred across into emergency surgery. I was put into an induced coma. The aneurysm was coiled up with nine aneurysm coils.  My fiancee was called, who travelled down from Brisbane and stayed by my side. She, in turn, was advised to call my family. She was told the prognosis wasn’t good, and that there was a chance that I not survive this one.

Over the coming days, I was kept in intensive care, on life support. I underwent further surgery, to insert three or four stents into the cell wall to strengthen it, and to allow it to regrow. During that time the synthetic material was also replaced, with a sizeable chunk of my thigh muscle, to naturally soak up any remaining blood.

Now it was just  time to wait. My fiancée  and family were told to expect the worst. I may not come out of the coma, and even if I did, given the size of the haemorrhage, to expect severe brain damage. I had not responded to any stimulus, and was still kept alive only on life support thorough a breathing machine.

Although, with hindsight, my nil response to stimulus was not so true. Apparently, whenever my parents entered the room, my blood pressure rose. So much so, they were asked to leave the room  by the nurses until my blood pressure reduced to safe levels. I must have known they were there.  I remember dreaming (or thinking) I was in a hospital, undergoing going multiple operations. And being plugged into machines that kept beeping (those pulse machines) but for some strange reason, I dreamt they were plugged into Twitter, and kept going off because people kept spamming them. And being an IT Security Consultant, I kept trying to get up to « fix » to stop the noise, telling the nurses that I knew better. (In fact, I kept trying to unplug myself and they were going to stitch in all of the monitoring devices if I didn’t stop trying to get up).

Whenever my fiancée slept next to me, or said anything to me, I responded by singing songs that only we knew. At the lowest point, when she slept next to me and cried, telling me not to leave her; I squeezed her hand and said « yes, dear » and reminded her how many children I wanted. (In case you were wondering, 34. Enough for two rugby teams, who’ll play both Rugby Union and League. Got to keep State of Origin in Queensland after all, and to turn the Wallabies around).

I pulled out of the coma. I woke up in the Neurosurgery Unit of the hospital. Of course, I had no idea where I was – last thing I remember was going into surgery in one hospital, which I knew wasn’t in a high-rise building which I was obviously in now. The nurses kept asking me if I knew where I was (which I didn’t), what the date and time was (which I didn’t know because there were no clocks, and I didn’t know my phone was plugged in next to me). Over the next few weeks I began to be able to correctly answer questions about « long term-issues » such as who the Prime Minister was, and which hospital and ward I was in, and what year and month it was; but not the day. My fiancée still travelled down on a 1.5hr each-way trip to visit me from Brisbane, after a full day of work., and I had started to start remembering things. I started speaking, in French, to the gentleman in the bed opposite; and him using his laptop gave me the idea of asking Lisa to bring my laptop and internet card down; so I could get online. I didn’t realise it at the time, but I was self-rehabilitating by being online, reading, keeping up-to-date with the jobs listings, news, and communicating with those « on the outside » with what was going  on.

It would take me a few weeks to understand what had happened. Dr Poulgrain did visit me to explain what happened, but also that he had decided to close his private practice and take early retirement. Lisa explained to me what happened too (a number of times to help me remember it), and I managed to organise medical notes and to start the ball rolling on my income protection insurance. I started to get more online, to read my news feeds, and start making the odd post on Farcebook; but otherwise keep up with the news that Apple were launching a new version of iOS (yeah, I’m a fanboi). The hospital did note that I had made progress, and had recommended that I transfer to a hospital in Brisbane. I thought this was a fantastic idea as it would reduce the amount of travelling for my fiancée (who was recovering from a knee injury, making driving difficult and painful).  I was put on a waiting list to transfer, and moved after a fortnight, when a bed became available. But didn’t realise that by being online, reading, writing and general keeping up with IT news, I had started to rehabilitate myself.

I didn’t fully appreciate where that bed was. It was in the Brain Injury Unit at the PA Hospital in Brisbane. BIRU, as its commonly known as, turned out to be a « secure unit » for Brain Injury victims to be rehabilitated in. By secure, I mean a locked unit. Most of the patients are severely brain damaged (i.e. need help with most normal activities such as eating, washing, etc) but make a surprisingly speedy recovery, hence why BIRU has an extremely good reputation. They are mostly victims of vehicle accidents, or of teenage « misadventure ». However, it is quite difficult mentally for people to deal with when they are admitted when they are already far down the road to recovery – and i was one of those people. « Secure Unit » means « locked unit », i.e. you weren’t allowed out of the unit, even to get a coffee from the hospital coffee shop, without having first passed a physical and memory assessment, and they don’t’ give that for that least 5 weeks after admittance. Both me and my roommate, who was in a similar rehabilitation situation to me, felt like prisoners and were suffering depression. Luckily we had each other to keep each other sane. As it was the Australian Census whilst we were there, we even classified ourselves as « inmates » rather than « patients ».

The BIRU process was rigid. Each work day, given the number of « guests » within the unit, your average therapy time was between 1hr and 1h30m. My therapy ended to be Occupational and Language, and both focused on the fact that I had short-term memory loss. Which is absolutely correct. I had short-term memory loss. And still do. Most of the « tests » that I undertaken tested short-term memory, particularly with names and faces, however they don’t take into count that I have always had issues with matching names to faces. I think that might be a male thing ;-). But seriously, what i didn’t know, was that short-term memory loss seems to be the last function of the brain to recover after serious brain damage, and of course because BIRU didn’t know me beforehand, they didn’t have anything to compare my test results to.  And also because « the research » indicates that name-to-face matching is a good test of memory capability, it was tough luck for me that thats all they could assess me on. Occupational Therapy was difficult because it was tailored towards manual occupations, and doing Information Security Architecture Consulting isn’t something they were geared towards. So they assessed me on « management » (organisation and people management skills) and reading, writing, recollection, memory and organisational skills, and techniques for overcoming shortcomings in memory (note taking, etc).

I was discharged after 2 months, which apparently was quite quick turnaround. This wasn’t the end of the BIRU process however, and I wasn’t approved to return to work. I was an outpatient for another 4 months, returning each Monday Morning for further monitoring in language and memory skills. I wanted to prove to them that I could do what I do, but thats difficult to do without working. So I self-studied to gain my Certified SOA Security Professional certification, a set of 6 self-study modules and 1.5 hour exams over a course of 6 weeks. I also started self-studying for the SABSA certification. That, in conjunction with normal « living » skills, such as proving i could live at home without setting the house on fire because I left the curry cooking for tool long;  also helped.

To re-iterate. I suffered a brain injury. And quite a bad one. But I don’t suffer any residual brain damage, aside from very short-term (last 2-5 minutes) memory loss in rare circumstances. I’ve developed techniques to overcome this. I’m medically cleared to work, drive, and am “normal” from all of these perspectives. And have been working in a professional environment ever since, with my colleagues noticing no difference from pre-surgery (I do ask them for their honest assessment to be sure).

Also during this time, Queensland Health’s Acquired Brain Injury Outreach Service (ABIOS) kept monitoring me, and put me in touch with a number of organisations that might help me out. I didn’t take them up on any of those offers, but ABIOS did put me in touch with the Making Sense of Brain Tumour project. Being an ex-academia person, I jumped at the chance to be a research subject. One of the Research Assistants on the project was doing a PhD on why Brain Tumour victims don’t get the same support that Brain Injury victims get in Queensland (i.e. BRIU, ABIOS), and I was obviously a superb person to study.  In my case I had a good understanding about the tumour, but not the Acromegaly (as my relationship with the Endocrinologist wasn’t great). They wanted to pilot an education and support program on me, tailed to my condition.

Through that study and ABIOS, I was put in touch with was the Australian Pituitary Foundation (APF).  The APF was the organisation I wish I had found when I was first diagnosed. Through their newsletters, website and resources, I started to actually understand a lot more about Acromegaly, both from a medical and non-medical perspective. The issue is really is the growth hormone, not the tumour. The Growth Hormone was going to kill me eventually, not so much the cancer.

ABIOS also helped me find a new Neurosurgeon, Dr David Walker. David was fantastic, but basically said there was nothing he could do unless the tumour progressed into other parts of the brain. It was just too dangerous to consider any further surgery given the metalwork and the bleed.  He referred me to a local endocrinologist, Dr Michael Keogh, who I immediately struck up a good relationship with. I strongly recommend Michael to anyone looking for an Endocronologist. He continued with the blood tests and injections, however I had reached the strongest level of the available ones on PBS. We worked with Queensland Health to try and get a hospital-funded prescription for a stronger drug not on PBS, but at $10,000 per injection I  simply couldn’t afford it, and Queensland Health has financial issues of its own. And $120k per year is obviously better spent on a 1.5 full-time nurses than one patient.

Through being part of the study, Dr Keogh, ABIOS and the APF, I realised that the Growth Hormone issue was still an issue. The growth hormone inhibitor injections were keeping my levels stable, but were at the highest strength available on PBS (on prescription).  The only medical option left, apart from the $10k injections, was radiotherapy. We all agreed that there was growth hormone-secreting tumour somewhere, and most likely remaining in the pituitary. So the next blog post will talk about what happened next.