Acromegaly, the Shrek Condition – My story. [Part 1: Diagnosis]

Well, its taken me a few years to get around to writing this post. Partially because I’m still learning about it, but also because I am also hearing of other people in Australia who are going through similar episodes (either themselves or of a loved one), and are suffering similar difficulties with finding out more about this.

I also want to get the truth out there.  Particularly to people who work in the HR, Recruitment and OH&S fields, because when I come across their radar, they get excited, scared, or both. I also work in Risk Management, and I also believe in being up-front with my medical condition so my employer/client can make their own decision. I believe that any decisions that are made must be made rationally, based upon accurate, proven information and not based upon an initial, knee-jerk reaction, on emotion, nor on fear, uncertainty or deceit.

I do have a rare form of cancer in the brain, that has caused a condition called Acromegaly. It is an increase in growth hormone production in the body, and whilst it makes me look like Shrek, its being extremely well managed. I am very likely to survive, because its been caught so quickly and whilst I am so young. It – nor any treatment – is not a danger to anyone I work or socialise with. I am not on chemotherapy or any other medication that would cause risks to anyone else, if I ever do end up going down that path, you will all be the first to know.

It all started in my early twenties, about twelve years ago.

I had abandoned my attempts at gaining a PhD (although didn’t do too bad with some first-year publications from each of them), and was thinking about joining the corporate world. My childhood dream was to visit Australia before I died, so I did a little backpacking around Australia (see right). Upon my return, a US-based multinational IT Consulting firm made me an offer that was pretty hard to refuse, to join them in their highly-respected Information Security Consulting team, based out of their Technology Consulting centre in Southern France.

Me in 2002
Me in 2002, whist visiting Australia.

Whilst I was always a bit of a workaholic, moving from the Academic lifestyle to the Consulting lifestyle was still a hell of a challenge. I was still extremely introverted, shy and nervous around people I didn’t know. My clients were geographically spread across Leeds, London, Brussels,, Barcelona, Turkey and Saudi Arabia, and all expected me to be their SME and “know things”.   I had to teach myself a lot of new topics and skills, because I wasn’t a computer scientist, nor had any experience in Computer Networking or Network Security. I was still extremely shy, and had to get over that. I also didn’t watch Star Wars nor Star Trek (although Red Dwarf still rocks). My health suffered through being self-depricating, shy, continually studying outside of long working hours, but primarily exhausted. 

Live to Work …

I was exhausted, not only due to the amount of travel (up to 18 hours per week in cattle class on European airlines – not great for a 6ft tall bloke), plus the full working week (at least 40 hours plus uncharged overtime); but also due to the amount of self-inflicted stress because I’ve always been a bit of a perfectionist and had to learn stuff out of hours. I also had a poor diet “on the run”, and consumed too many wines and beers on flights and whilst waiting in airport lounges. I was depressed, mentally and physically exhausted. Continually exhausted, to the point of sleeping through the weekends when I should have been enjoying life on the French Riviera. As is traditional in France, my French doctor also diagnosed me with scoliosis (apparently my back pain was caused by a tilted pelvis causing my back to grow “curved” to compensate) and depression, and put me on a permanent course of massages and ever-increasing doses of anti-depressant, blaming a lack of Seratonin in my brain.

After visiting Australia, I decided I was going there sooner rather than later. My perception was that life was more relaxed and easy going. Understandably, my employer wasn’t willing to transfer me across, because my skills were in demand in Europe and they didn’t want to encourage their own staff to go “visa shopping”.  So I applied for my own visa under the Skilled Migration programme, based upon my Information Security skills. At that time, the CISSP was on the MODL, and I had achieved that and the CISM certification, so as long as I successfully applied  before hitting 30 years old, I had a good chance of getting a PR Visa.

My employer realised I was serious about this (once I asked them for proof of employment to send with my own visa application) and  that I was going to go to Oz with or without them, they made things slightly easier my enabling me to transfer across to help build a similar practice based out of Australia. They sponsored a temporary visa, ensuring that I could only work for them; so I kept my own PR Visa application going to give me the freedom to move on should things not work out.

Me in 2007
Me in 2007. Notice the bigger jawline, forehead and nose.

And, of course, they didn’t. Whilst in Australia the workload was higher but the salary was very low, particularly for Sydney. This caused me to spend all my free time jobhunting to find a role which could pay the bills and my migration costs, whilst still suffering depression, anxiety and exhaustion. Whilst i managed to get those increased eventually, I got my own PR Visa and moved on. The diet was still pretty poor, and I took other roles in Sydney, Brisbane, Perth, and back to Brisbane which either increased the amount of travel (sometimes across the Asia-Pacific), working hours, stress levels or a combination.

With hindsight, I can now see that the symptoms of alcoholism had really increased. I drank to temporarily relieve stress, but also to temporarily relieve depression and severe loneliness (I didn’t really know anyone where I lived,because I was always working away from home). The few people I did know, and family visiting from Europe and others who hadn’t seen me for years, had commented about my increased weight. My face looked fatter. I went up from a M to XL in shirt size. I ballooned from 88kg up to average around 110kg, but by the the time I was 28, I’d hit 135kg. But I thought nothing of this, because i knew i was eating poorly and drinking too much at home. And I would stop, and come off the antidepressants, next week.

… or work to live?

In one of the new roles, I joined a boutique consulting company in Brisbane. I was on a team doing a pre-sales piece at a bank in Sydney. I had arrived on site as the organisations expert in a particular  technology. During the morning working with my new team, i started getting pins and needles in my hand. Over the course of the next hour, it went up my arm and down my leg. By midday I couldn’t feel my arm at all, it was paralysed. Doing the worst thing possible (self-diagnosis by Google), I made my excuses and found a local doctor in the Sydney CBD. Which was lucky, because once I arrived at her office my leg was paralysed. She shone a light into my eyes, couldn’t see anything wrong, but didn’t know what was going on. Afraid I was suffering a stroke or heart attack, she called an ambulance.

The Emergency Department of the local hospital couldn’t work out what was wrong with me. The CT scan came up clean. I was still paralysed, and it seemed to be spreading. So i was transferred to the emergency ward of the St. Vincent’s, the main hospital near the Sydney CBD. I remember it well – it was State of Origin night, I was wearing a Purple shirt, so whilst being abused by the NSW supporters in the in the Emergency Room I couldn’t resist responding with “QUEENSLANDER!” and reminding them, continually, that it was 3-0 to QLD in the series. A student nurse, who turned out to be from Brisbane, came up to me to give me moral support by bagging out the southern supporters, but said something that changed the course of my life:

“Wow. You’ve got big hands, haven’t you?”

Being a single male, and gave the predictable response. And got the obligatory slap.  But then I followed up with:

“I’ve got big feet as well. Yeah, they used to be smaller, I’ve gone from Size 11 to Size 14 since being in Australia. Middle-aged spread I guess.”

Apparently, thats not normal. She informed me that a) middle-age isn’t in your late 20s (goddamit, there goes by excuse) and b) even if it was, men don’t put weight on in their hands and feet, they put it on around their waist. So something wasn’t right.

What did you look like when you were younger?”

I showed her the photo of me in the Outback (above).

I’m just going to make a call. Don’t worry, i just want to check something. Oh, and I need to do a blood test.

Within a few hours, a lot of Neurosurgeons turned up. And a number of medical students, all looking excited and whispering amongst themselves. I never had an MRI before, but at 2am on the Thursday morning after Queensland’s glorious victory over New South Wales, I did.

And this was it (see right)

MRI Scan
The MRI Scan highlighting the Pituatary Adenoma

That thing in the red circle is my Pituitary Gland. Apparently, the Pituitary is the gland in the brain that deals with ensuring that the body produces the right levels of the hormones that it needs to keep the body alive an healthy. These hormones include Thyroid, Testosterone, Oestrogen and others including Growth Hormone. Its not meant to be that big, its only meant to be the size of a pea. Mine had a 4.5cm tumour (a pituitary adenoma) in it. And – guess what – its been causing my my body has been overproducing Growth Hormone for years.

They told me, the next morning, that I had the “Shrek Condition”, Acromegaly. And its rare – on average, hitting about 1 person per million. Its the pituitary causing the body to over-produce Growth Hormone; my growth hormone levels in my blood were through the roof. The usual range for adults was between 12 and 30 measurement units. Mine was around 880. It was likely that the tumour was the cause of this. Usually adults get diagnosed in their 50s and 60s, because by then it has has also caused liver failure and/or colonic cancer, which is the killer because by then its too late to operate.

I was told I was lucky to be diagnosed so young, but even so, if I was lucky, I had around four years to live. They wanted to operate, now.

I didn’t understand what they were telling me. I was in a hospital, 1000km from home, tired after being in an ER ward all night. I’ve got a lot of very excited Medical Surgeons and Students all gawping at me. I’m tired, grumpy, and upset because the news was showing that Farrah Fawcett had just died. (But I was also secretly happy that Michael Jackson had carked it, I never liked him, particularly with his erratic behaviour over the years). None of this was sinking in. I was in shock.

I was extremely lucky to be diagnosed. It turns out the ER Nurse had learnt about this condition as part of her studies a few weeks earlier, but was told “you’ll probably never see anyone with this in your career”. I never got to say thank you to that Nurse, but if you are reading this, thank you. You saved my life. 

As it turns out, its not a well understood condition.Because its so rare, most sufferers die from the colonic cancer without allowing research to take place, and its rarity makes it even harder for a cure to be found. But, as I have since found out, it is believed that as well as causing the body/bones to keep growing (hence my enlarged forehead, jawline, soft tissues looking like weight), excess Growth Hormone levels also cause depression, severe anxiety, chronic fatigue/exhaustion, other hormonal issues, carpal tunnel,  lack of libido and compression of the optic chasm. In my case my eyesight is unaffacted, but alongside that chasm are nerves – we think that the compression of those was the cause of the pins and needles and paralysis in my left arm.

So, this was in mid-2009. Just over three years ago. What did this mean? What happened next? Was this the life event that caused me to work to live, instead of living to work? How do you physically and mentally cope with this? What do you do next? What financial, medical, emotional and psycological support did I have in Australia?

That’ll be the topic of the next post.