Part 3: The Big Day Dawns
On two occasions the consultant neurologist had offered me the option of surgery and I had turned it down because it was not performed in Ireland at that time and I had little information about it. The consultant told me only that a probe would be put down into my brain and a small piece would be ‘burnt off’ but “you will be fine”. This was not enough information on which to make a decision on such a serious operation.
My condition was deteriorating and I decided that it was time for me to think seriously about the future and how I might be in ten years time. I began to research the operation (pallidotomy), to read books, look at videos and enquire about people who had had this operation and their present condition of health. During this time the consultant suggested to me that, in his opinion, surgery was the only way in which I could improve my quality of life, and so I told him to start making arrangements for me to have the operation.
Carmel, a lady a little older than I, telephoned offering to meet with Marie and I to talk about the surgery she had undergone in Sweden for Parkinson’s disease and the effect it had on her. She was a positive person and was glad to be able to help me by telling of her experience and the quality of life she had now, compared to that prior to the operation. She had benefited significantly from the surgery.
There were considerable risks involved such as a stroke, total or partial paralysis, and loss of vision or internal bleeding in the brain. I thought of the options: if I had the operation and it failed, I could live with the fact that I had made some effort to improve our life style, but if the operation was a success and gave me a reasonable amount of mobility I would be very happy! We decided to go ahead. It was late November 1997 when I informed my consultant of our decision and asked him to refer me to the Frenchay Hospital in Bristol, as this type of brain surgery was not performed in Ireland at that time.
Once I had made the decision I wanted arrangements to go quickly. It was early January 1998 when I contacted the Fenchay Hospital in Bristol directly by telephone myself. With the help of our fax machine we sent forms and information back and forth with great speed. I had the opportunity to speak with the Movement Disorder nurse on the telephone, and this gave me more confidence in the people who would be looking after me in the hospital.
Within two weeks of contacting the hospital I was given a date for the surgery. In my eagerness to have the operation, I did not stop to think that there would have to be some tests done first. Marie and I had made the final decision to have the operation, and now we became anxious to have that decision fulfilled.
We were very positive about it. I was to be admitted on Wednesday, May 6th and have the operation on the Friday May 8th and return home on Monday May 11th. That was the schedule. My condition was bad, but I felt great now that the wheels were turning - something positive was being done.
On Wednesday, 6th May 1998, I was admitted to the Frenchay hospital in Bristol. I was in my wheelchair and I was tired from the journey over from Dublin the previous day. Marie and my son Brian (who is a nurse) had travelled with me from Dublin and this gave me some comfort. Marie showed courage and composure in the middle of a situation that many a person could not have coped with. She must have been very anxious but did not let me see her anxiety.
The hospital wasted no time. As soon as the formalities were over, the nurse started the assessment. The first test was a neuro-psychological test over a two-and –a-half hour period. It was very demanding and it made me realise that it was not yet definite that I would have this operation. When Karen (the nurse who looked after the whole procedure) came back to me after the first test I began to question her as to whether I was suitable for the surgery and was told that I would not be informed of the decision until Thursday evening the 6th of May. I must have asked dozens of times whether I was a suitable candidate for surgery!
On the Thursday evening Mr. Gill, the consultant neurosurgeon, came to my bedside and discussed the procedure with my family and me. My brother Roger had arrived over from Dublin on Thursday morning and was also there at the bedside. I felt anxious to know the verdict, but calm in myself that I was ready to go with the surgery.
Mr. Gill discussed two kinds of operation, but did not fully recommend the surgery (a pallidotomy) that I had travelled over for, because, in his opinion, it would give me just 38% improvement. There was a second option. He was in the early stages of researching another procedure that was performed in a different area of the brain. He suggested that I might consider this, as in his opinion it would give me a much better chance of greater improvement - about 50% to 60% improvement. This alternative was called a sub-thalamotomy, after the area of the brain which was the target of the operation, the subthalamic nucleus.
He said that he did not take unnecessary risks, and that if he felt that the benefits did not outweigh the risks he would not perform the surgery. We had another decision to make, whether to try the relatively new procedure or go for the first option. Mr. Gill did not hurry us and answered all our questions about both procedures (I am sure several times) until we were happy with our decision. My attitude was that we had hope since January when all the arrangements began and now that I was a candidate for the surgery, I would put my trust in the surgeon’s ability. Marie and I agreed that I should have the sub-thalamotmy.
Within a few hours I was taken off all medication and had and an MRI scan while fitted with a frame secured to my head by four bolts (a stereotactic frame). This frame was used to guide the probe to the correct spot in the brain with pinpoint accuracy. That Thursday night was very long and very uncomfortable; I was counting the minutes, which were endless, waiting for the operation to start. I was sure that this is what I wanted. I did not once consider the possibility of failure.
I was brought down to the operation theatre at 8 a.m. on Friday 8th May and was scheduled to return to my ward at 11 a.m. Just before the operation was to begin, it was discovered that the frame had slipped slightly, and Mr. Gill requested that it be re-positioned and checked. This was to cause a delay of one hour. I remember asking the nurse to tell Marie that everything was OK and not to worry about the delay. At this stage I had been off all medication from five o’clock on Thursday evening, and so I could not move at all; I was totally immobile.
When the operation began, a hole was drilled in my scull, I was conscious with just a local anaesthetic in the neck. As Mr. Gill carefully moved the very thin probe down through the hole in my head into my brain, Karen - the nurse - repeatedly asked me questions and spoke to me in order to see my reaction. The probe had to pass trough the areas that controlled sight, movements and other senses. At one stage I became lock-jawed, could not speak and could see six clocks where there was only one.
The probe was moved slightly nearer to the predetermined spot and I began to feel a sensation of movement and my body did not feel so heavy. They had reached the right spot. They then removed a piece of the subthalamic nucleus the size of a pinhead. The probe was removed and I was cleaned up and the frame removed from my head.