BARRIE'S STORY - An acoustic Neuroma patient

21. UPDATE 1 March 2004

A decision was taken to open my eye in early November. Before it was opened I had assumed I would not see any improvement in my balance until my eye was opened. It is very difficult to measure improvement in balance but I noticed to my surprise that I could put on and remove my trousers without support. This requires standing on one leg and then moving the other leg.

My eye was opened in early November and as for the earlier closing of the eye, it is done under local anaesthetic. The eyelids, after the closure, had grown together at a number of points along their length.They had to be cut with a pair of scissors, then cauterised to stop any bleeding. It sounds worse than the reality but having had the earlier experience of the stitching up of the eyelids I knew what to expect. Afterwards, I was given an antibiotic and teardrops to put into the eye. I did not feel that my balance made any significant improvement initially, but I was dealing with several problems. My eye slowly became more and more bloodshot and streaming with tears. I persevered for too long with this situation not seeing my eye surgeon until early December. It was decided that perhaps I was allergic to the antibiotic and so an alternative antibiotic was used. I was not able to operate my eyelid sufficiently so I was given a temporary weight for my eyelid. My eye then began to respond, the redness died down and the eye, although still wet, began to react normally. The temporary weight was titanium and was placed onto the eyelid with double-sided sticky tape. At night I removed the weight and used micropore tape to close the eye. Because the sticky tape strips, used to hold the temporary weight, are of variable stickiness sometimes the weight would fall off. This makes this solution only temporary because you end up thinking it may fall off at any moment!

The other major problem I had was double vision problems, particularly when wearing my glasses for distance viewing. I was sent to an Orthoptist who had an ingenious solution. She had a piece of transparent plastic with a series of prisms of varying value built into it. By moving this up and down in front of my glasses I could determine when the images were together. She then took my glasses and cut out a piece of the plastic to the shape of my glasses lens at the right prism value to resolve the double vision. This piece of plastic was then placed on the inside of my glass lens and held on by water tension. Over the 18 months my eye had been closed the muscles controlling the eye had become very flabby resulting in the double vision. It would take quite a period for the muscles to re-establish themselves to control the double vision. After a month another test indicated that the prism value could be reduced by 50%. I was advised not to go back to my optician until the double vision had settled down. This could take a number of months to reach a final value.

In early January I had the operation to insert a gold weight into my eyelid and avoid the problems with the temporary weight. This is undertaken under local anaesthetic and was probably the worst of my eye operations since it takes about half an hour and I obviously had to keep very still and spend my time imagining what was being done to my eyelid! The eyelid was cut open then a gold weight, with holes in it, was sewn into the cartilage in the eyelid. This ensured the gold weight was fixed in the eyelid and prevented any future movement of the weight, then the eyelid was sewn up using dissolvable stitches.As with my first operation I had a black eye after the operation, but slowly the eye settled down and I need only put in a teardrop three times a day and Simple ointment at night. Due to my allergy to the antibiotic I have to use teardrops that have no preservatives in them. The remaining problem is that the used tears are not properly removed, because the tear ducts are not working properly. This is the result of the facial palsy and it is not clear whether this will ever improve.

The problems with my eye lead to my driving assessment course being delayed, but eventually I had the course in early March. I was asked a range of questions and given a simple eye test. I was then allowed to drive on the private circuit that they have at the Road Transport Centre. In retrospect I think I should have had a couple of driving lessons to get used to a car again. I found that not driving for two years meant that it was quite strange, but my previous 30 years driving did eventually take over and I began to feel comfortable. After driving on the private track I was accompanied on the public roads for about an hour. The result was that I was considered to be no more likely to have an accident than any other road user. I received a report that I then sent to DVLA and their response confirmed that I could drive again. I have contacted my Insurance Company and they have confirmed I can start driving again. It is unclear to me what would have happened if I had not volunteered to do the course, perhaps DVLA would have insisted I take it. I feel my insurance company would have made my policy void if I had an accident without getting their permission to start driving again.

With my eye slowly recovering the most pressing outstanding problem was my writing. At a meeting with my Main Consultant in December I described my continuing writing problems. I was sent to a Neurological Doctor who has made a speciality of arm problems following brain surgery. I found this a complete waste of time; I was told I had hemi ataxia, a weakness down my right side, affecting my face, arm and leg. I was told I was lucky to be alive and would have to put up with the problems! Not exactly a good bedside manner.

Following this disappointing review of my problem, my wife found a physiotherapist who believes in long-term recovery. This is a private session and it is showing promise. She believes that the NHS, with its target setting, has no interest in long-term recovery and in fact in my county post-operative support is quite poor. She has described my walking as two-dimensional and has started to loosen up my whole body with exercises.

My operation was 2 years ago and I feel that I have made considerable progress but I still feel there is further progress to be made. I am planning to continue with the physiotherapy and hopefully this will help to improve my handwriting as well as my movement generally. I will now start driving and then progress to relearning to ride a bicycle again. I have recently managed to drink without a straw but I still have some tightness in my face. My face has improved to the point that only very observant people or medical staff can notice I still have some problem with it. It seems to me that there is always further improvement to make and each new step is smaller and smaller. I suspect that this process will continue for some time yet.