BARRIE'S STORY - An acoustic Neuroma patient

5. INITIAL STATE

When I came round from the operation I had no idea what were the problems I would have to overcome. Over a period of time I realised I had the following difficulties: -

a) Loss of hearing in my right ear.

Obviously I was expecting this outcome and I had generally already understood the implications of this. With only one ear, I had no way of determining the direction of sound. In addition I had found that if someone was sitting on my right side, then I might not be able to hear them. This is particularly a problem in a noisy environment. In the longer term I began to notice that the hearing in my left ear appeared to be sharper.

I now think that this is due to the removal of the 'noisy' right ear hearing mechanism. I suffered from some tinnitus (ringing in the ears) prior to the operation. Despite the removal of my right inner ear, due to the continued existence of the auditory nerve, the tinnitus remained, but it is not a major problem.

b) Loss of Balance due to the removal of my right inner ear.

As my balance had been very significantly affected before my operation there was no improvement immediately following the operation. In many ways my balance was worse immediately afterwards and I had difficulty moving around.

c) General 'woolliness' in my head.

I had not had dizziness before the operation but what I describe as a general 'woolliness' in my head. It was as if I was somehow slightly disconnected from the world. This problem seemed to be worse after the operation and was to remain with me for many months.

d) Facial palsy.

I had hoped that I would escape facial palsy, but the size of the tumour meant that it was inevitable. I was told that my facial nerve was very stretched but the surgeon had been able to avoid cutting the nerve.

e) Loss of control of my right eye.

As part of my facial palsy I was unable to blink or control the movement of my right eye creating double vision. My eye was heavily lubricated with Lacrilube cream to keep it moist. During the first week I remember a conference at the bottom of my bed between the neurological surgeons and the ophthalmic surgeons about whether my eye should be closed! Because the lubrication seemed to be working, the neurological surgeons won the day and my eye was left open. Later when I had to have it closed I was glad that the closure had not been done earlier.

f) Complete loss of walking.

I was obviously very weak after the operation but I seemed to have considerable problems 'learning' to walk again. My first steps were with a walking frame since as well as having difficulty with walking I had my balance problem to contend with.

g) Ataxia problem with my right leg.

It was not clear immediately that I had a problem with the control of my leg since I could not walk. Ataxia is damage to the nerves that drives muscles in different parts of the body. An Acoustic Neuroma can grow and interact with the cerebellum, which is the central switching centre for nerves from the brain to the rest of the body. As the tumour grows it is so slow that the distortion of nerves has no effect. When the tumour is removed there is a rapid movement of the nerves to retake the space taken by the tumour. This rapid movement can cause damage to the nerves.

h) Ataxia problem with my right arm.

My right arm would not do what I wanted it to do and would often shake and sometimes would make movements apparently of its own accord.

i) Stiffness on my right side.

The main muscles seemed stiff, presumably affected due to nerve damage.

j) Loss of handwriting.

I think related to the ataxia in my arm, my handwriting, which I had lost before the operation, did not return.

k) A 5-inch wound on the left side of my stomach.

This had been made to obtain fat to close the wound in my head. It left me with a weakness on my left side, which was the worst side effect to have considering the problems with my right side. I found that I could not lift myself off my back for many months after the operation. I had to roll onto my side and then use my arms to lift myself up. I found this technique described in the post-operative advice for stroke patients.

From this list of problems, I was clearly in a pretty bad way. When an Acoustic Neuroma is diagnosed and removed, the patient inevitably asks the questions why me? Why now? There is little point dwelling on these questions. There is nothing that can be done once the condition has been diagnosed and operated on.

When my children were young they were very much into the 'Mr. Men' books and they nicknamed me 'Mr. Rush'. As well as being 'Mr Rush' I was pretty impatient and would not 'suffer fools gladly'. The impact of the operation was that I have had to try to learn to be more patient. After my operation it was clear I was going to experience a major change in my lifestyle. Everything was very slow to start with and even now, I cannot do everything as fast as I would like.

I have recently read a book written by Jane Lapotaire, an English actress, called 'Time Out Of Mind'. It describes Jane's struggle to recover from a brain Aneurysm (burst blood vessel in the brain). I suspect her surgery was more evasive than for a typical Acoustic Neuroma and so her post-operative state was worse. I found only a few references in her book that I could relate to. She tried to ignore her condition fairly quickly after her surgery to repair the burst blood vessel and had many problems including quite severe depression. I felt that she had tried to ignore her condition rather than accept the situation and slowly try to recover. There is a fine line between taking the situation fully onboard, including wallowing in your condition, and simply trying to ignore your state and carrying on regardless. I felt I needed to remain positive and aim to recover gradually.