Hello. I'm a 36 year old Australian from Melbourne and this journey of mine began in late May of 2001 when I was hit with a massive headache, accompanied by neck and shoulder pain. I tried to ride it out but, after several days was forced to see a doctor for the first time in 15 years. By the time of my appointment, the pain had subsided considerably, but I went along anyway because, in the back of my mind, I knew that something wasn't right. For years, even as a child, I'd been getting a strange numbing sensation down the left side of my body. These would last only a couple of minutes and because they didn't affect me doing anything, I had chosen to ignore them. I'd always known that one day I'd have to find out what was going on but I wasn't in a hurry to. As it turned out, I'm glad I waited this long.
My doctor booked me in to get a CAT scan at a radiology place, just around the corner from where I lived and when they had the film developed in the afternoon, I was phoned and asked to pick them up and go straight to the emergency department at St Vincents hospital. I walked back to the radiology clinic, asked for my scans and was given 'the look' by the receptionist when she handed them to me - quite different to the one I'd got that morning. I jumped on a tram that I knew was going straight past the hospital and sat down with this big white envelope. I opened it with my heart in my mouth and pulled out a scan and held to the light. It didn't take a brain surgeon to realize that what I was looking at wasn't good - what looked like a void on the film which I knew to be a huge mass, the size of my fist in the right side of my brain. I don't think I've ever felt so alone before in my life as I did on that tram - It was like looking at my own death sentence.
When I got to the hospital, I was admitted and told I had a large AVM (about 6cm) in the right posterior lobe of my brain that was congenital, ie: I was born with it. In the 3 days I was there, I had an MIR scan and an angiogram and was given steroids and Dilantin, which made me feel disorientated and definitely 'not of this world'. It seemed that the surgeons were not sure what to do with me, as my headache was non-existant by this time. I was sent home with a prescription of Dilantin and an appointment for the following week. The Dilantin, I knew, was to prevent me from having any epileptic type seizures, but I figured that since I'd gone 35 years from having one, coupled with the adverse symptoms associated with the drug, I'd give it a miss. Needless to say, I went home feeling as though the whole world had been pulled out from under my feet.
I went back the following week for my appointment with the head surgeon of neurosurgery at St Vincents. He sat down with my scans and informed me that the AVM was 'too big and too deep' and that they weren't keen on operating, as it would more than likely leave me paralyzed down the left-hand side of my body. I was also told me that I could give radiation treatment a go, but it probably wouldn't work, due to the size. He gave me a 2% per year chance of having another bleed, which kinda sounds ok, but that's cumulative percentage we're talking - not great odds if you're keen on having a long life. I was basically told to go off and 'lead a normal life' and, all going well, I could keep going for another 35 years. All I could think of when I left was 'great! I don't have to have an operation!' The whole reality of what life would be like, living with a time bomb in my head, hadn't sunk in. When it did, it hit me like a ton of bricks, so I decided to go travelling in India for a few months, to hopefully gain some sort perspective.
Before leaving, I was convinced, by a friend, to seek a second opinion. This led me to the Austin Repatriation hospital in Heidelburg, Melbourne, where as fate would have it, my dad died 14 years ago from cancer. At my first appointment I brought my scans from St Vincents. Upon taking out the first film and looking at it, the doctor declared, 'Ummm. Very deep. Very scary' - more to himself than to me or my sister, who had come along to help remember and process information given, and for much appreciated support. I felt confident I could get straight answers from this guy. He told me that he would show my scans and discuss my case with all the other neurosurgeons there, including his boss, who had the most experience in this field. I was to come back next week to see what they reckon.
On the 1st of Sept, 3 days before I was to fly out to India, I went to the Austin and was told that my AVM was operable with a 95% chance of everything going well. Prior to surgery I'd be having embolization done to stop bleeding while they remove it. I found it hard to believe. In an instant, my whole perception on life and death had just taken a complete turnaround.
The doctor was a bit surprised when I told him I was going to India for 3 months and that I'd go on the waiting list to have the op when I got back. I'm fortunate enough to live in a country with free health care and my time in India made me realise just how fortunate I am to have the opportunity of having this operation, or any other for that matter. I had such a wonderful time, travelling on my own, without a care in the world and preparing myself physically, mentally and spiritually for what I had to face back in Australia.
I've now been back for over a month and find myself in a kind of limbo as I wait for 'the call'. I see this operation as part of the transformation process I've been going through of late, a kind of re-birth, where a part of me that's no longer needed will be removed. Part of my preparation has been cutting off my hair, which I'd grown long for all my adult life. It feels liberating to let it go.
I must say that the reality of having brain surgery scares the hell out of me as so many of you can understand, but I also know that there's strength in fear. What shines through and pervades all of your stories is an amazing sense of courage and strength. Also compassion, in sharing your experiences to nurture and give strength to others who would otherwise feel alone. Thanks for that and good luck and healing energy to you all on your journeys.
I'll be sure to let you know how I get on
Update 11 Feb 2002
Last monday (Feburary 4) I went to an outpatients appointment at the Austin Hospital, as I wanted to meet the man who was going to perform my op, to ask some questions and hopefully find out when it was to be. To my surprise I was told that they've had a re-think and it is in fact, too risky to go through with surgery and that it would be best to explore some other options first (embolization + radiation or nothing?)...Looks like I've come full-circle.