Denis Snape talks about his journey with ET and his personal experience of DBS

At the age of around 40 (I am now 70) I became aware of a slight tremor in my hands and after many years of persevering with this problem I sought medical help. I saw a neurologist at my local hospital, who was not quite sure what the problem was, but confirmed that it was not Parkinson’s disease and I was prescribed various medications all to no avail.

When the neurologist retired I was transferred to another who diagnosed my problem as ‘Parkinson’s disease’ and so I embarked on a ‘pill popping’ journey for a few years. Each time I visited the consultant he either increased the dosage or included yet another tablet, but during this time my condition was sadly deteriorating.

I was so frustrated I requested a consultation at another hospital and my GP referred me to another neurologist who on my first visit diagnosed my problem as essential tremor and not Parkinson’s disease. As you can imagine, it took many months to be weaned off the medication I had been taking before I could embark on my treatment for essential tremor.

At this stage I was referred to a neuro surgeon in Birmingham for a consultation regarding Deep Brain Stimulation (DBS), but at this point in my life I wasn’t ready to face the thought of an operation to cure my tremors. So I battled on having to give up my job, which I enjoyed. Meal times at home were no longer a pleasure and it was a case of what I could manage to eat. As many of you will understand, the frustration of everyday tasks was becoming a nightmare and I had to rely on the help of my wife each day. The one thing that would help of course was alcohol, but I knew going down that road would lead to more problems, so I only used it as an absolute must.

Three years ago my GP realised just how desperate I was becoming and referred me to see Dr. Steiger in Liverpool. Dr Steiger understood my condition fully and after prescribing more medication without success he broached the subject of DBS, suggesting that I went to see Mr. Varma at the Walton Centre in Liverpool. Mr. Varma offered me the operation at my first consultation, but I was told to go home with my wife and consider the decision. But I had already decided; I was ready to go ahead with DBS.

Five months later we went along to the Walton Centre to have all the preliminary and pre operation checks. The staff was very friendly, positive and reassuring and helped to sort any worries and questions we had. In spite of the inspiring day we had at the Walton Centre, it was with great trepidation that I went in for the operation three weeks later.

The first operation took place the following day. This involved having scans under anaesthetic (as the tremor in my head prevented me having scans whilst awake) and screws attached to my head so they could be used as reference points to identify the location for the probes and wires that would be inserted the following day. I also had to have my hair shaved off!

On day two my operation was to take place in the afternoon and in the morning Mr Varma’s team visited me and gave me reassurance. I was laid on my back during the operation with my neck in a v shaped head rest for several hours as it is preferable to remain awake during the operation, so as to respond to the surgeon’s requests. At the end of the operation you feel exhausted to say the least.

Two days later I was allowed home for just a week with regular visits from the district nurse. The following week I was back to the Walton Centre for the third operation. This operation was performed whilst I was under anaesthetic and involved a cut to the side of my scalp to feed the wires into my chest. There was also another cut to my chest for the insertion of the stimulator. After the previous operation this was quite straightforward.

The following day I was visited by the specialist nurse whose job it is to tune in the stimulator and then ‘switch me on’. This took some time as the improvement became obvious in my hands, but my speech became more slurred. Eventually, a suitable level was reached and I was allowed home the following day. I am amazed that I underwent three operations in such a short space of time and have had no problems, no infections and no setbacks. I had never stayed a night in hospital before and would say my fears and dread of hospitals has now been overcome.

I did lose some benefit in my hands a few months later, but I went back to the Walton Centre and they had the stimulator fine tuned again and I recovered. One improvement I noticed immediately was the loss of the tremor in my head, which is wonderful.

Whilst, it is not a cure as all the doctors impressed upon us before the operation, it is quite an asset to eat with more confidence. I am able to manage some day to day tasks much better than before.

As with all things, I believe that the level of benefit varies from patient to patient but all I can say is a big ‘thank you’ to all the doctors, nurses and staff at the Walton Centre.

This article is from the NTF News December 2009 issue. To get access to the rest of the NTF News please become a member.