Mia Scundi's CEP Experience
Thank you for inviting me to share my experiences of temporal lobe epilepsy and my life after neurosurgery with you.
It is difficult to put into words lasting a few short paragraphs, exactly what I experienced for the best part of twenty years. My initial battle began in July of 1985 with a prolonged febrile convulsion lasting 30-45 minutes at fifteen months of age. While I was obviously too young to recall details, and my mother now passed away, the sole person beside me at the very time of this incident and my father was out at the time, memories are few and far between. My father recalls to me however: "You had tonsillitis at the time, and all I remember your mum saying is you were experiencing a high fever of which she was attempting to control by placing you in a bath of cool water. Whenever removed from this water, your temperature would rise again". As a result I was admitted to hospital and soon after, was diagnosed with epilepsy.
Growing up, while I was aware that I did suffer from epilepsy, the exact nature and severity of my condition was unbeknown to me. Perhaps this was due to the fact I didn't know any different, for other than my first fifteen months, I had never experienced life without seizures; complex partial seizures which would last for one to several minutes, but would leave a much longer lasting impact; I would lose consciousness and complete memory of occurrences of during, before, and after the seizure. In addition to this I would experience extreme levels of fatigue and in some cases incontinence. At worst, these seizures would recur throughout the day, to a point where I would sometimes experience up to twenty complex partial seizures a day. These would always be preceded by what I referred to as the 'sick feeling' - I quite simply never knew how else to refer to it. Although particularly difficult to describe, this sensation was an 'unpleasantly surreal' experience, whereby my regular conscious state would be altered but not entirely lost. This would be in addition to an unpleasant deja vu sensation accompanied by smells and tastes which were not truly present. I would experience the 'sick feeling' anywhere up to twenty times per day, but a complex partial seizure would not necessarily follow. I always assumed this sensation was nothing more than a 'warning' that a seizure may occur. This would prompt me to stop whatever I may have been doing, to concentrate and literally repeat to myself the words of 'go away sick' until this feeling subsided. Whether this actually made an impact, I am unsure. In the heat of the moment however, there was not much more I could do.
As previously mentioned, I did not know life without epilepsy, and therefore this was normal to me. As a result, I at times found it difficult to understand why my family would show such concern for me in situations involving the beach, the pool or crossing the road alone to name a few; and walking to the milk bar alone was never an option. Having said this, I was rarely restricted in doing things I enjoyed, whether it be performing on stage at a young age, summers at the beach, attending school camps or playing competitive tennis. While of course I would still experience complex partial seizures in these situations, I was aware that these occurred entirely out of my control, and was therefore never at any time embarrassed or easily distressed; perhaps also assisted by the inability to recall the episode. Over the years, efforts were made to control my epilepsy through numerous scans and medication, in addition to undergoing video-EEG monitoring on a couple of occasions around the age of eight and nine years old without success. As a result, the exact nature of my epilepsy was still unknown to me.
As I grew older, although I was experiencing fewer complex partial seizures, day to day life became increasingly more frustrating. Whether this was through trying to perform simple tasks like holding a conversation, or performing more difficult tasks such as trying to complete my schoolwork, I would experience continual disruptions when the 'the sick feeling' would come about, or the memory loss and fatigue that accompanied the occasional complex partial seizure. This resulted in a gradual decline in self-confidence, and it was becoming more evident too, that stress, fatigue, illness and heat triggered my seizures. Despite my condition, I was lucky enough to travel to France at the age of 16 on a school adventure, while VCE exams on the other hand proved to be particularly challenging. It was well known to me by this stage that high levels of stress and fatigue would more than likely result in seizures. This did in fact occur, and the consequences of my seizures showed enormous impact on my ability to perform to my full potential, further reducing my confidence. In addition to this, I was surrounded by friends all receiving their drivers' licenses. While I understood for numerous years that I'd be unable to obtain a driver's license, a lack of independence became clear to me, further emphasised by my family's deep concern if I was to catch a bus or a train on my own. While I was aware that life could be a whole lot worse, my cynicism gradually increased in regard to what my future would possibly hold for as long as I had epilepsy. This was at the conclusion of 2001.
What unfolded the following year was a whole lot more devastating than suffering from epilepsy. In January of 2002, my mother was diagnosed with breast cancer, only to pass away three months later in April on my 18th birthday. During this period, I experienced a secondary generalised tonic-clonic seizure, my first of this kind, as a result of severe stress and fatigue. For the remainder of the year, I undertook a traineeship in dental assisting. This proved to be particularly challenging, for my family and I were trying to adjust to a new lifestyle at home without our mother, and as a result, I experienced numerous complex partial seizures, occasionally while assisting chair-side in the dental surgery. This was in addition to continually having to rid myself of 'the sick-feeling'. As the year progressed, I tried to convince myself that I would be able to work around my condition; and although I received my qualification, the reality was that my future in any workforce would prove to be difficult if my seizures continued. Finally, following the extraction of my wisdom teeth under general anesthetic, I experienced a further secondary generalised tonic-clonic seizure, which eventually prompted me to return to my pediatrician to renew my referral for a neurologist I had received months beforehand. Due to a pessimistic attitude, I chose to ignore this until now.
It was at the time of June 2003 aged 19 years old, that I fell into the trustworthy hands of Professor Ingrid Scheffer. Admittedly, prior to our first meeting I was particularly skeptical, and doubted there would be anything she could do to help me; how unfair and incorrect this thought would later prove to be. It was during this initial meeting that for the first time in my life, someone could comprehend 'the sick feeling' and not stare back at me in a quizzical manner. It was then that I learned 'the sick feeling' was in actual fact an aura, or simple partial seizure Ð 'the sick feeling' now had a name. Therefore, to learn I was experiencing up to twenty seizures a day for as long as I could remember, in addition to the complex partial seizures, the severity of my condition was then clear to me. It was now becoming more evident how little I knew of my epilepsy which had been part of me for so long. The prospect of surgery was alluded to at an early stage, something which my family was particularly concerned about, and even opposed to. On the other hand, I was convinced from day one that this would eventually be the path for me to follow.
One month later in July, I was admitted to the Austin for two weeks of video-EEG monitoring, SPECT, PET and MRI studies. At this point in time, I was still quietly pessimistic as a result of unsuccessful attempts at these in previous years. Amazingly, for the entire first week, I more or less experienced no seizures of any kind, something that had never occurred to date; as a result, I had never before felt so well. Despite this bizarre occurrence, I was admitted to hospital to have my seizure activity recorded, and so I patiently awaited something to happen. The events of the following week were nothing short of a miracle. While partial seizures returned to the normal occurrence of twenty times per day, what began as a pleasant conversation with my family and without any obvious trigger, a series of inexplicable seizures arose. In addition to simple partial seizures, I experienced a complex partial seizure and a secondary generalised tonic-clonic seizure. For the first time also, my father was present while this occurred, and the apparent look of shock and concern he showed suggested that the severity of my condition was now clear to him. In addition to this, I also learned that I was experiencing seizures during my sleep, something else I never knew of until now. Upon closer examination of these tests, it was soon established that I was a perfect candidate for surgery.
Several months of trialing various medications were carried out initially, in an attempt to control my seizures but without any success, and as a result, conversations reverted back to undergoing surgery. It was now clear that this was my only option if I was to experience a life free of epilepsy. While I believed I was ready for surgery then and there, my father was concerned, as I guess many parents would be. However, a 55% chance at a life free of seizures but full of independence was too exciting for me to contemplate otherwise. Amazing support I received from my mother's best friend Gillian gradually assisted in turning my father's thoughts around. As a result, following numerous extensive conversations with Professor Scheffer and my neurophysiologist Dr Marie O'Shea, the decision was finalised; I would undergo surgery on the 11th of March, 2004, one month or so before my 20th birthday. Shortly following this decision I was introduced to my neurosurgeon, Associate Professor Gavin Fabinyi. It was here that I was truly amazed at how this gentleman had the ability to make a procedure on one's brain sound so simple; it was after all one of the more 'commonly' performed brain operations! Following this meeting, I was confident that I was in perfect hands.
I was often asked if I was nervous about my pending surgery. To be entirely honest, I had never been so excited about anything in my life, and every night whilst eating dinner with my family, I would ecstatically announce how many sleeps remained until the 11th of March! This excitement was primarily due to the confidence I had in all of my doctors.
It was explained to me that post-surgery I may experience the odd handful of seizures before settling down. However, all I experienced was what felt like an enormous four day hangover, immediately after surgery, something that later proved to be a small price to pay. After recovering from this 'hangover', I was able to enjoy my initial days without suffering from a single seizure. Upon returning home, despite somewhat 'looking out' for seizures and 'waiting' for them resurface, I experienced nothing but seizure-free days. After the first month I was delighted to report my seizure-free news to Professor Scheffer and Associate Professor Fabinyi. While I was continually expecting any kind of seizure to occur, week after week I would be proven wrong. I soon began to realize the indescribable feeling of well-being I was experiencing. No longer would I have to excuse myself from conversations to concentrate on telling 'the sick feeling' to 'go away', and no longer would I suffer the memory loss, the incontinence, and fatigue which accompanied a complex partial seizure. It took some time for me to consider this sense of well-being 'normal'. In fact, it was not until I climbed behind the wheel of a car for the first time, after one year free of seizures, that I truly realized what I was now experiencing was indeed reality.
During November of 2005 at the age of 21, I obtained my driver's license - confirmation that I was embarking on a new and independent journey. This was verified further upon commencing studies in fashion and marketing at RMIT in 2006, something of which I am due to complete at the end of 2008. Throughout these studies, it has become increasingly evident to me that I can perform to my full potential now that I no longer experience seizures. By this I refer to my ability to maintain concentration and therefore effectively retain information, without the further fear of suffering memory loss as a result of a seizure.
For probably close to ten years, a life for me without epilepsy was quite simply not any more than an occasional thought. Today, more than three years seizure-free, I am independent with career aspirations and a degree of confidence that I, at one stage, would never have deemed possible. If I was to look back at my life prior to surgery in an attempt to find the person I once was, I know for a fact that I would struggle, for it is only now that I realize how little confidence I had and how unhappy was. In my eyes, the biggest miracle from this entire experience still remains to be 'that week' back in July of '03. Therefore I am particularly thankful that I have had the opportunity to publicly acknowledge the amazing work of Professor Scheffer, Associate Professor Gavin Fabinyi, and Dr Marie O'Shea, who have transformed me into the happy and confident woman I am today.
By Mia Scundi