Sharing the vision epilepsy: life’s turning point Gavin Dimitri

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THE EPILEPSY REPORT OCTOBER 2008

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                          THE EPILEPSY REPORT OCTOBER 2008

and a number of tests, that I have no 

recollection of, I returned home the 

following day. An appointment was 

made for me to attend the outpatients 

department and at this appointment 

Ginny and I were told that I had had an 

epileptic seizure. The tests that had been 

done so far did not reveal the reason for 

this seizure. I was told that this was not 

uncommon and some people can have 

one seizure and never suffer another. It 

was then that I was introduced to Mark 

Green from the Epilepsy Foundation 

of Victoria and he discussed some of 

the causes for epileptic seizures, such 

as alcohol, flashing lights and stress.  

I had been going through a bit of a 

stressful situation with the business that 

I was running and I simply and maybe 

naively put the seizure down to stress.  

Although the tests had revealed nothing, 

the neurologist recommended I undergo 

an MRI scan to eliminate any other 

potential causes. In my mind I was not 

an ‘Epilepsy Sufferer’.

The MRI scan was done a few weeks 

later and a second appointment to 

discuss these results was made with 

the Neurology department. I went to 

this appointment alone, as it was now 

almost a month later and I felt fine, so 

in my mind it was one off seizure due 

to stress.  As soon as the neurologist 

looked at the MRI scan, I could tell by 

his reactions that something was wrong. 

It turned out that I had what was called 

a cavernous angioma, a small mass of 

tangled blood vessels, on the left frontal 

lobe of the brain. These blood vessels 

had probably bled at some time and this 

is what had caused the seizure.  Once 

again, I could not believe that this was 

happening to me. A second meeting with 

Mark Green was organized immediately 

and after the initial shock and disbelief, 

this meeting had the greatest impact 

upon the decision I was about to make.  

Mark, too, had suffered from epilepsy 

and he had undergone surgery which 

was one of the two options I had, the 

other was medication that I would have 

to take, most likely, for the rest of my 

life. After talking with Mark, I had 

pretty much made my mind up that I 

would undergo the surgery.  Although 

not life threatening, my condition meant 

that I was likely to have more seizures 

and more importantly to me at the time, 

I was unable to drive for the next twelve 

months following a seizure. It was 

probably the loss of control over my life 

that was the most difficult thing for me 

to deal with.

I underwent the surgery in November 

2003 and this is when the second stage 

of my story begins. 

A 

first episode or diagnosis of 

epilepsy often marks a point in 

life that many people with epilepsy 

remember. For me, a night in August 

2003 marked my life’s turning point, but 

one which provided me with the impetus 

to achieve my life’s goal of completing a 

triathlon. 

This was the night I had my first 

seizure. At around 2am I woke to find 

my wife Ginny crying at my bedside 

saying that I had just had some sort 

of seizure and that an ambulance was 

on its way. I remember thinking that 

she was crazy and I told her she was 

probably having a nightmare, however 

I did find it difficult to get these words 

out. I have a very vague memory of the 

next few minutes and it was not until 

the ambulance officers appeared in my 

bedroom that I started to think that this 

was actually happening. I remember 

telling the ambulance officers I was 

fine and there was no need for me to 

go to the hospital, but my reactions and 

ability to express this did seem a bit of 

a struggle. After being wheeled out to 

the ambulance, it was the flashing lights 

of two ambulances in my driveway that 

started to make this seem real.

The ambulance took me to hospital 

where I apparently had a second 

seizure. After a night in emergency 

  my life’s turning    point

As a teenager Gavin Dimitri had always wanted to complete a triathalon. While preparing for 

brain surgery, he decided to get as fit as possible to improve his recovery. Not being able to drive, 

Gavin rode his bike everywhere.  As his fitness improved, he achieved that teenage goal in 2004. 

Five years on Gavin has a new goal – to compete in the 2009 Ironman Australia.

 

Prior to the surgery I had decided to 

get as fit as possible in the hope that this 

would hasten my recovery. Due to the 

fact that I was unable to drive, I had to 

walk and ride my bike every where I 

needed to go and amazingly I started to 

get fairly fit. 

The surgery went well and I was out 

of hospital in only five days. There 

were a few headaches associated with 

the surgery. The strangest and most 

uncomfortable sensation was the 

movement of fluid that sits in between 

the brain and the skull.  But once again 

the most frustrating part of recovery 

was the loss of control.  When I was 

working I yearned for the opportunity 

to sit around and do nothing for days on 

end.  Reality was a lot different, I was 

bored after a week. I didn’t realise how 

bad day time television really was. Once 

I could get around I started riding my 

bike and walking/jogging again and my 

fitness continued to rise.  

When I was a teenager a personal goal 

of mine had been to complete a triathlon 

and in November 2004, with the help 

of my family and friends, I managed 

to successfully do this.  Over the next 

few years I kept doing triathlons, I 

have managed to complete three Half 

Ironman Events – just over five years 

from the surgery.   

The ultimate challenge for any 

triathlete is to successfully complete an 

Ironman event and my goal now is to 

compete in the 2009 Ironman Australia 

at Port Macquarie.

In preparation for this I will compete 

in the upcoming Melbourne Marathon, 

my first marathon. It is basically 

for training ( I can’t believe doing a 

marathon is training), and I will follow 

this with a Half Ironman in November 

and long bike rides over the summer 

months to improve my cycling leg as 

most time in the event can be made up 

here.

So that’s the plan, I am sure there 

will be hiccups along the way but time 

will fly until the start of the Ironman 

Australia on 5 April 2009, where I hope 

to finally conquer one more of my life’s 

little goals. In support of the Epilepsy 

Foundation of Victoria and to raise 

epilepsy awareness and I will proudly 

wear an Epilepsy out of the shadows 

singlet during the event.

 If it had not been for epilepsy I doubt 

that I would ever have completed my 

first goal of doing a triathlon let alone a 

full Ironman.

I believe, although difficult to 

comprehend at the time, that first seizure 

has probably had one of the greatest 

single positive impacts of my life.  

Upon reflection I feel lucky. Yes I had 

epilepsy, but we knew what had caused 

it, it was operable and in a position of the 

brain that was easy to get to which was 

likely to cause no long term side effects. 

And it provided that turning point in my 

life that has allowed me to fulfil a dream 

I have had since I was a teenager. 

epilepsy:

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