Personal Stories

Out of the Shadows by Miriad Kavanagh

26 January 2010
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Where do I begin? That's what everyone asks when they are writing about their lives. So much has happened that it's hard to know. I was born on the 5th August 1980 in the Rotunda hospital in Dublin. I come from a family of two older brothers. My parents were trying for 11 years for me after my second eldest brother. People ask me were you the mistake? I replied "No, my parents were waiting for perfection". I was conceived in October 1979 after Pope John Paul the second visited the Phoenix Park in Dublin and my mother happened to be there.

I was delivered by forceps just like my two brothers were so there was no difference there. My development was normal all the way up until I was 11 months old until I had my first convulsion. I was sitting on the floor playing with my older brother. That's when I was rushed into Our Lady's Hospital in Crumlin. I was kept in for tests to see if they could find out what caused the convulsion. I was given the all clear and my family were relieved. My parents had mass said in our house to thank god. But unknowingly the worst was yet to come.

Two months later I had my second convulsion. I happened to be in my cot at the time. It was a Saturday morning and my dad happened to be at home and he heard me hiccupping at the time. He took me out of my cot and put me into a cold bath to bring down my temperature. I was then rushed back into Crumlin Hospital and they weren't able to diagnose me fully. However they put me onto my first anticonvulsant called Phenobarbital, and as soon as I was given my first spoonful of that it made me very sick. I can remember it tasting like a banana flavour funny enough. I was taken off that and put on Epililm and that made me very hyperactive. The next drug they found which worked was Tegretol. It didn't fully control my attacks though.

Every couple of months I went in to see a brilliant paediatrician in Crumlin Private Clinic and by the time I was four years old I was diagnosed with having Petit Mal Epilepsy. Then it was time to start school. I was sent to a number of different schools. There were a lot of difficulties I faced. I found it very hard to memorise information, learning tables, maths and concentrating. I used to count a lot on my fingers. The teacher found it hard to keep me in my seat because of hyperactivity. I was quickest in my family at learning to ride my bicycle and the time. My parents finally found a school which was the best out of all the schools I went to. I needed remedial help in maths from a brilliant teacher there and because of her I achieved a very good Junior Cert and Leaving Cert. If it hadn't have been for her I don't think I would have made it.

When I turned 13 I finally got my period and my seizures seemed to centre around this. As I got older I got a lot worse. The things that would happen during my seizures would be that I would first get an Aura which was a taste in my mouth. Once I had a signal that the seizure was about to occur I would generally walk out of the room so people wouldn't get a fright witnessing my attacks. I hated bringing attention to myself. I would then go into a trance. I wouldn't understand what a person would be saying to me although I was aware of who was in the room with me at the time. I wouldn't be able to talk properly and as soon as I came out of the seizure it would take a few minutes for me to talk properly and remember what I was trying to say. I was told that I would talk rubbish when I was in a seizure just like when a baby would be learning to talk. Other events that have occurred during my seizures have been that I have dropped cups, wet myself and vomited especially around my time of the period. I would generally have about five attacks a few days before I was due. While I was growing up I was sent in for EEG's, MRI scans and blood tests. When I was 17 yrs old I was finally sent to a Neurologist and he sent me forward for a test called Video Telemetry. The idea behind the test is to keep you in the same room hooked up to a Video Telemetry EEG monitor. I was kept in Beaumont hospital for about 9 days. When I went back to get the results of my VEEG from my Neurologist he told me he didn't think I was having seizures only panic attacks and I refused to believe this. I insisted that I be given a second opinion and I was very glad I was given it. I was referred to a brilliant Consultant Neurologist in Beaumont Private Clinic, Dr Norman Delanty.

I was sent into hospital again when I was 21 years old to have the same VEEG done again. When I went back to see my Neurologist to get my results he had no hesitation in saying that I had epilepsy which I knew myself. He then gave me the proper name for my type of epilepsy which was Complex Partial Seizures. He also was able to tell me what part of my brain the seizures were occurring from, which was my left hippocampus just under my left temporal lobe. He tried me on a number of new anticonvulsants like Topamax, Neurontin and Lamictal to name but a few. But they all had side effects on me like double vision, upset stomach etc. So I was taken off them. He put me on a drug called Trileptal and Gabitrail and they both have been good but still they were not fully controlling my seizures.

When I went to see my Neurologist he said that there was probably no chance of them ever getting my attacks fully under control as they had been trying for over 20 years. He recommended me to go forward to be considered for surgery. I had heard a lot of bad things about surgery, the risks involved and what the chances were of getting my seizures under control after the surgery. The chances of never having seizures were about 65%. There was a 5% chance of something going wrong be it a stroke, a complication or an infection after surgery. I was very wary of this. It wasn't for a couple of years later as my attacks were getting more severe that I decided to go forward to be tested.

In December 2005 I went to my first Youth 2000 retreat. I placed my health problem in God's hands and I said Our Lady and Jesus if this operation is for me I trust that you will show me which the right path is for me. Around March 2006 before I went to have tests done and I rang the Irish Epilepsy Association to ask them did they know anyone who had gone through all of the tests and the surgery who I could talk to before I went to have my first tests done. The lady I met said it had been successful for her. She kind of eased my mind. I also started reading up as much material as I could find online and I even spoke to people from the States who had been through the surgery I was going forward for and again it had been a success. Reading the material about the Wada test was frightening though. I went to have my first test done which were the PET scan and an MRI Scan in the Blackrock Clinic in March 2006. I went to have my second test called The Wada which was performed in Beaumont Hospital in July 2006. There was a chance I could have a severe stroke with the Wada. But I had been praying to God to protect me and I said a Novena nine days before I went in as I was very scared. My eldest brother happened to be away on holiday and my other brother couldn't come in with me either. My mum brought me in but I didn't want to worry her so I said she should go home until the hospital rang her to collect me.

I went back to my Neurologist in October 2006 and he gave me the results of both the tests I had gone through. He gave me the results I was expecting that I was suitable for surgery. They had found a scar on my left hippocampus and they said that if it was removed there was a very good chance I would never have another seizure again. The Neurologist said to me that if I was still unsure about what to do that I should meet my Neurosurgeon who happens to be in Beaumont Hospital. I went to see him with my eldest brother on the 11th November 2006 and he told me all the risks that were involved with having the surgery. So he said go home have a think about it and when you have made your decision please give me a call. I went home and talked it through with my family. I wanted to change my life and continuing the way I was wasn't going to do it. After about a week and a half I had made my decision and the answer was "Yes".

On the 22nd December 2006 I got a call from Beaumont Hospital to tell me that they were going to try to have me admitted on the 1st January 2007 and have my surgery on the 4th January 2007. The reason I was admitted on the Monday evening was that they needed to do scans, blood tests on the Tuesday and also so I could have a chat with my Neurosurgeon to tell me what to expect and to sign forms etc. I was told that my blood was low in sodium so I was put onto sodium to increase it before the operation. I was also put onto another drug to help with the swelling after the surgery. The Wednesday night before my surgery I was so nervous but I knew I had made the right decision. I wasn't allowed to eat or drink anything after 12am. I didn't really sleep well that night. I said the Rosary that night to ask Our Lady to protect me. I had loads of people, family and friends and people I knew through Youth 2000, Pure in Heart and the Legion of Mary texting me to wish me luck and to say that they were thinking about and praying for me. That night I wrote a lot in my Diary as to how I was feeling. To be honest I was very scared because the operation was a big risk. But I put my trust in Our Lady and Jesus that they would look after me.

The morning of the 4th January I got out of bed at about 7.00am. I jumped into the shower and had a long wash and got ready for my surgery. I had a long gown on and no clothes underneath. The previous day I had parts of my hair shaved so the Surgeon could make the correct incisions. I took my medication and at about 8.20am I was wheeled down to the Operating Theatre. I could remember looking around at all the other patients before I was brought in to the surgery. I was put to sleep by doctors and the next time I awoke was at 1.30pm when the doctors and nurses were asking me where I was, what my name was and what the date was. They also asked me to raise my hands which I did. I was then wheeled up to a high dependency ward which I don't remember. My brother came to see me after my surgery and he was waiting in the hospital when I came out. I was a little out of it when he came up. I could hear him talking to me and I could understand him. My other brother and my mother came to see me also. I could feel someone rubbing my hand. They left a few minutes later to allow me to sleep. My Surgeon came to see me that evening also to tell me that the operation had been a complete success and that they had removed the scar which was causing my seizures. The scar that had been removed was also sent to a lab to be tested to see what would have exactly been the cause of it. The doctors and nurses came to see me to check how I was every 10 minutes or so. Every time they came to see me they asked me the date, my name and where I was. They came to give me my medication and I puked that up. It was the effects of the drugs they had given to put me asleep for the operation. I awoke up fully at about 9pm that night and I asked for my mobile. I rang my parents and brothers to tell them I loved them, that I was ok, that I would see them tomorrow and goodnight. They couldn't believe it was me. The previous night my family were unable to sleep. They were worrying about me and what could happen. They wanted to take me out of the Hospital that morning before my surgery.

The next morning when I woke up I could feel tubes everywhere. In both my arms, my head, and I had a bag inserted in my groin so it was very uncomfortable. My head on the left side was numb. I couldn't feel it at all. My jaw was very sore because the temporalis muscle is partially divided in order to perform the craniotomy. I got up out of bed to sit in my chair to have my breakfast. I couldn't stay in the chair too long as there was nowhere to rest the back of my head. My head felt very weak. I asked to go back into my bed and they removed all of the tubes out of my hands and my groin. The tube to drain the blood off my brain had to remain in place for a few more hours yet. I was then brought back to my normal ward. I was probably the quickest they had seen to come out of the high dependency ward. Then at about 12pm I was wheeled down to have a scan to see how everything was. It was all good news.

Every day my surgeon came to see me with his team and my Neurologist also came to see me. I was asked each day how I felt and had I had any seizures and each day my answer was No. He told me not to worry if I did have a seizure it has happened in the past to patients, even if a scar has been removed they might still have a seizure. The Sunday after my surgery my eye swelled up as if I had been hit by a base ball bat. The last seizure I had was on the 3rd January 2007 and I haven't had any since. I thank God every day for getting me through the operation and for the courage to go through with it.

I was released from hospital on Tuesday 9th January 2007.The day I was released from hospital I went home and I couldn't stop crying. I felt very down but also happy I couldn't believe it was all over. Each day I have grown stronger. I went to the cinema, went for a walk along the beach, read my book, and watched TV. I took it easy. I went back to see my Surgeon on Tuesday 13th February 2007. He was very happy with my progress. I went back to work on 26th February 2007. It's good to be back to normal as I was going nuts staying at home. My aim now is to look forward to a great life with no seizures and to the possibility of being able to drive in January 2008.

First published in Epilepsy News - Issue 38

 

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