My name is Judy Grey, and I am 48 years old, married with two children...a son 16 years and a daughter 13 years.
My AVM story began back in 1968, although at the time I didn't know it. I was 14 years old and one day I noticed that my legs seemed stiff, and walking was difficult. This progressively got worse, and after a few days I could not walk at all.
My GP was not sure what was wrong, and I was sent to hospital. Here I had exploratory surgery, and my parents and I were told I had "a pinched spinal cord" probably due to a fall from a horse. I lived on our family farm and was always coming off my horse, so this seemed a logical explanation. The doctors said that I would never walk again. I spent the next 12 months in a spinal unit having rehabilitation, and against all odds I did manage to get back up on my feet.
For the next 33 years, completely unaware of the AVM in my spinal cord, I did my best to overcome my walking disability, and worked as a secretary, got married to a wonderful man, and had my two precious children.
Looking back, this in itself is amazing, as I now know that pregnancy can be very dangerous to someone with an AVM, as the rise in blood pressure can cause a haemorrhage.
Move forward to September 2000, and we in Australia are hosting the Olympic games. My son and I planned to watch all the events, as it was school holidays. On Day One we had just watched the triathalon, when I stood up to go to the kitchen. Suddenly, what seemed like bolts of lightning, were surging up my back. The pain was incredible, and I could barely walk. My son helped me to my bed, and as I lay there, a pain began at the back of head, and was the worse I have ever felt. I begged my husband to help me, and that is the last I remember for two weeks.
I was rushed to hospital, and for two weeks I drifted in and out of consciousness, with the occasional seizure. I had cat scans, MRI's and x-rays, all trying to find the cause of the brain bleed I had suffered. I told the doctor about my past spinal problems, and this prompted him to order a spinal angiogram. All tests up until now had been concentrated on my brain.
It was with great relief on his part, that he then discovered a spinal AVM located at T7. Apparently, this had haemorrhaged and sent a bleed up to my brain. He told me how very lucky I was to survive, and not suffer a stroke or die.
In an amazing twist of fate, my old medical records from 1968 were located and the notes from my surgery stated that a spinal AVM had been found, but due to lack of technology it was felt best to leave it alone. All these years I had an AVM and never knew it! Perhaps the doctor felt that an explanation of "a pinched spinal cord" was easier for me to understand than "an arteriovenous malformation".
My doctors strongly recommended surgery to remove the AVM, as they said if it should haemorrhage again I may not survive. Surgery would be risky, and there was a chance of total paralysis due to the AVM being so close to the spinal cord.
In January 2001 I endured an 8 hour spinal surgery, which partially blocked off the blood vessels feeding the AVM. Ten days later I had an embolization to block off the final vessel. It now seemed to have gone. However, within a few days I noticed that the strength in my legs was also going. Within a matter of weeks I was completely paralysed from the chest down. It now appears that the blood vessels feeding the AVM, were also feeding my spinal cord.
It is now April 2002, and my paralysis is still complete. I do not know if I will ever get any movement or feeling back, but I take each day as it comes. Life in a wheelchair is not much fun, but I try and look on the positive side of life, and am so grateful for all that I have. My husband and children are my inspiration, and I thank God that I am still here to enjoy life with them...even though I did miss out on the entire Olympic Games !!!!