MY HEALTH EXPERIENCE:I had ganglioglioma, which is unusual at my age
I’D SPENT well over a decade in London, working as a computer programmer, and returned to live in Cork, where I’m from, in May of last year. For the past few years over in England, I had developed a limp. Shortly before I left, a lady passing me in the street asked me if I had polio.
Looking back now, nobody is more surprised than I am myself that I did not seek medical treatment. There were two reasons for this – there was no actual pain, and I thought the limp was intermittent. I believed that as soon as I got to a surgery, the doctor would have no symptoms to examine.
When I came back home permanently, family and friends finally more or less “pressganged” me along to a local GP. As it happened, my problems were all too obvious to him and he referred me to a neurologist.
In December 2008, the neurologist discussed my condition in great detail, comparing my symptoms to those of my mother who moves around in an electric buggy. He actually used the world “spastic” in relation to my limp, but arranged for an MRA scan. An MRA scan is an MRI of the blood vessels to find blockages or diseases that are associated with the circulatory system of the body.
I went for the scan in February of last year, and returned to the neurologist in mid-March. He had examined my scan and decided there and then that there was what he referred to as a “cyst” on my brain and that I probably needed surgery.
Nine days later, I saw a neurosurgeon who examined the scan and said he believed I had a tumour. He asked when I would like surgery for it – there was no “if” really – and so from April 5th to 8th I was in Cork University Hospital for an operation.
I was not in the least bit worried about this surgery, especially as I had had an operation once before. I felt if surgeons could not handle my particular operation, then they simply would not be in the job. People started offering me “best wishes” for the operation, which was actually counterproductive. It was almost as if they knew something that I did not. So I was the “calm”in the “eye of the storm”.
The hospital admission was scheduled for three days, booking in on Sunday afternoon and leaving late on Wednesday morning. I like to think I was a good “textbook” patient. Certainly I did everything the medical staff asked. The operation seemed over, literally, in the blink of an eye.
I feel like a whinger for mentioning this at all, but nevertheless must say that my only slight discomfort was that I was hooked up to a catheter. I was previously unaware of the existence of such a thing.
I've been recovering and have noticed that certain symptoms, such as "dead legs", have been less frequent. I had found that after I sat down – for however short a period of time – my legs felt "dead" when I stood up again, as if I had just sat through Wagner's entire Ring Cycle.
The good news is that this started to correct itself toward the end of June. It is still improving, albeit at a slower and slower rate it would seem. After the operation, a surgeon warned me that they were not altogether sure how successful it would be in terms of curing these symptoms. And, yes, my limp is now more or less gone.
I had ganglioglioma, which tends to occur in children or teenagers. It is regarded as unusual at my age – I am now 51. Although I have not named any names, I am grateful for the treatment I received, and I want to give a special thanks to anybody reading this who recognises themselves here.
I still wonder how long the tumour had been growing, but I am also aware of how lucky I am that there is a technique known as an MRA scan. If it didn’t exist, how would the condition have been diagnosed in the first place?
In conversation with Lorna Siggins
GANGLIOGLIOMA: WHAT IS IT?
A ganglioglioma is named after the Greek terms for “knot” (ganglion), “glue” (glia) and “tumour” (oma).
Medical experts describe it as a rare brain tumour that can cause seizures, and it is treated with surgical intervention. More than 95 per cent of such tumours do not recur after removal. Most are observed in patients younger than 30 years of age, and are estimated to represent about 10 per cent of all primary brain tumours in children.
The prognosis for those diagnosed with ganglioglioma is excellent if the tumour is totally removed. An additional factor is that most of these tumours are not aggressive, meaning that they do not spread very fast.”
