This is a much edited version of the whole diary, recording the diagnosis and removal of an acoustic neuroma.

For further information and possibly a copy the full diary, anecdotes and all, drop me a note.  Several people have been kind enough to contact me, so please don't be shy!

The First Signs

The first sign of a potential problem was recognised at a routine BUPA health check in June 1997. It was noted that my hearing was reduced at higher frequencies on the left side. Coupled with my first report of tinnitus in that ear, it was suggested that "it may well be worth having this looked into further." My GP did not believe it was worth bothering about and it was not until over a year later, following my next BUPA medical (in November 1998) and a further worsening of my hearing, that I was referred to an ENT consultant.

Referral

I saw my ENT consultant at the Harbour Hospital in Poole on 7 December. He recommended an MRI scan, largely to eliminate the possibility of diagnosable problems.  I accepted that my problem was relatively minor and that it was "just one of those things" for which there was probably no treatment. 

MRI

I was able to arrange an MRI scan at Poole Hospital very quickly - on 11 December.  Both the machine and the process were a bit daunting but it was all over in under an hour.  I was given no hint as to whether or not anything had been found.

Diagnosis

I heard nothing for nearly a week and assumed that this meant that all was well. I was then given an appointment to see my ENT consultant on the day before Christmas Eve, at the Nuffield Hospital in Bournemouth.

I was still convinced that the consultation was a routine follow up and refused an offer from my wife to accompany me. As I walked into his consulting rooms I could see a scan on his x-ray viewing box, hanging on the wall. His first words were "I presume you know that we have found something".

He went on to explain that I had an acoustic neuroma. He was at pains to explain that it was benign and very small. He explained that surgery was probably the best option. He showed me the scans, which revealed the growth and drew pictures to explain each of the three surgical routes for its removal. He explained that the condition was extremely rare, "six in a million" and that it had come as a surprise to him!  He opined that the tumour was small enough to consider a route (the posterior fossa) which might preserve some of my hearing.

I should have been relieved that although the news was not good, it was not immediately life threatening. I suppose I was but I was still clearly shocked at the thought of having to undergo surgery on my head.  We agreed that he should seek out a suitable (well practiced) surgeon. I left with my mind in a whirl.

Christmas

The Christmas break followed. This was nine days long and although thoughts of the problem were always there, it was possible to forget it for some of the time. I got brave enough, after a couple of days, to surf the World Wide Web in pursuit of information on acoustic neuromas. I found a paper from a symposium in the USA in 1991, which was quite informative, although obviously seven years out of date. Some of the information was a bit scary – especially the bits about the potential side effects of surgery. We decided to ignore it and wait for a more informed opinion from the surgeon.

Meeting My Consultant Surgeon

An appointment was made to see a surgeon who was very experienced in removing acoustic neuromas, albeit largely using the translabyrinthine route.  She was a little "business like" to start with but I warmed to her as we progressed. She asked a series of diagnostic questions, looked in my ears, gave me a repeat hearing test, and consulted my MRI scans before discussing her diagnosis. 

She confirmed the presence of an acoustic neuroma and the need to have it surgically removed. The rate of growth of neuromas is not fast but it can be erratic. If left alone for a year or more there would be a risk that it would grow enough to make its’ removal much more problematic. It was my perception that her preferred choice of route would be translabyrinthine as this would be the least risky, although it would entail the complete loss of hearing on the left side, coupled with the loss of the balance mechanism on that side as well.

 She pointed out that both the hearing preserving routes would involve moving the brain out of the way, which has attendant risks and that the risks to the facial nerve were greatly increased because of the difficulty of achieving a clear view of the relevant nerve during surgery. She recommended that I undergo a hearing and balance test, coupled with a CT (computer tomography) scan. The former would establish the level of damage to my hearing on the left side, the quality of the hearing on my right side and identify whether or not any damage had yet been done to the balance nerve. The CT scan was to provide additional information to that provided by the MRI scan, particularly the physical layout of the bony structures around the neuroma and the alternative lines of approach to it. Both a decision, which I would have to take, based on a recommendation from her and the recommendation itself would have to wait until after these two diagnostic test had been completed.

CT Scan

The CT scan was arranged very quickly and we went to the Wessex Nuffield on 20 January, the day after my 54th birthday. The machinery was much like a cut down version of the MRI scanner. The whole process only took about 30 minutes.  The consultant radiologist showed us the results on his computer screen before giving me a film copy for the surgeon.

Balance

We went to Southampton University on 2 February. The tests were divided into two parts, hearing and balance. The first test was similar to hearing tests I have had before. The headphones were different; comprising two matchbox sized boxes clipped to my pullover, with clear plastic tubes running from them to each ear, through an earplug. I had to press a button every time I could hear each of a series of tones. 

I was then asked to repeat a series of words, as they were played to me through the headphones, at varying levels. 

My eardrums were then pressure tested, using a piece of electronic gadgetry, with a CRT display. It proved that both my eardrums were intact and working properly. I was then given a test to check the performance of the cochlea. The ear was stimulated, using a tube and earplug, with a series of clicks. The mechanical response of the ear canal was recorded, this time on a PC colour monitor, giving frequency against amplitude information. This confirmed that my left ear hearing performance above 2 kHz had already been irreparably damaged, probably by the neuroma restricting the blood supply to the cochlea.

Then the fun really started with the balance tests. I was taken to another small room and made to stand on a small platform, with a semi-circular screen, about seven feet tall, about eighteen inches in front of me. I had a harness fitted to me in case I fell over. All I had to do was stand still while first the platform moved, then the screen moved and then both moved together, each at three levels of intensity. At the lowest level, the movement was hardly perceptible. At the most intense level, my toes were working hard to keep me upright. However, I believe that I demonstrated that there was nothing whatever wrong with my balance mechanism.

The final test was another check on the functionality of the balance nerve in each ear. I was taken to yet another small room and lay on a table, flat on my back, looking at the ceiling. I had electrodes fitted, one to the centre of my forehead and one on each side of my face, just outside each eye. My left ear was filled with a constant flow of hot water. The purpose was to stimulate the balance nerve. It worked! My head swam and I was very glad to be lying down. The swimming feeling in my head passed but then we had to go through the same process all over again with my right ear. That balance nerve worked very well too!

During the review of the tests, my consultant confirmed that my hearing on my right side was very good. On the left, it was very good up to 2kHZ. Above that frequency it was pretty awful. My balance nerves and mechanism were excellent. In summary, it was my understanding that the hearing and balance capabilities I had were worth preserving, if there was a safe means of so doing.

Choosing the Route

My surgeon went on holiday and it was Monday 15 February before we able to review my CT scans.  She announced that the layout of the bony structures were conducive to both the hearing preservation routes. This was a bit of a surprise, as she had not seemed at all keen on hearing preservation surgery during our previous visit. She stated a preference for the posterior fossa rather than the middle fossa route, as brain retraction in the former was not an epilepsy risk. Middle fossa involves going through the skull above the ear; posterior fossa involves going through the skull behind the ear.  In both cases a  hole, over an inch in diameter, has to be made in the skull and the brain has to be retracted (moved out of the way!). The risk of epilepsy associated with the middle fossa route ruled it out for me.

Despite the fact that it was two weeks since my hearing test at Southampton, she did not have the report. She therefore suggested that we should leave a final decision on the route until after she had read this report and offered to phone me at home on the Wednesday evening.

She phoned me, as promised on the Wednesday evening. She confirmed that the hearing test had revealed that my hearing on the right was excellent and that my hearing on the left was fine up to 2 kHz but above that it was pretty useless. We discussed the two remaining options, posterior fossa and translabyrinthine at some length. She tried hard not to influence me but it was clear that if she had to face my problem, she would opt for the latter. She told me that I could leave the final decision on the route until the last minute and the matter was left up to me.

However, I felt that I needed to make a logical choice and not have it hanging over me.  I tried to capture the risks and benefits of each route, as I perceived them from my surgeon's comments.

Route/Factor

Translabyrinthine

Posterior fossa

Hearing Preservation

None

40 - 50%

Facial palsy temporary

30%

30%

Facial palsy permanent

Negligible

Negligible

Likelihood of recurrence

Negligible

2 - 5%

 

It might appear that the decision was really a simple choice between the small risk of a recurrence against the chance of retaining some hearing.  I still found it very difficult to make a choice.

In the end, about three weeks later, after further discussion with my surgeon, I decided the sensible thing to do was to take the least risky option, the translabyrinthine route and accept the inevitable loss of hearing.

Waiting

All I had to do now was wait for the clock to tick away.  Four weeks later, a week before the operation, I was called in to the Wessex Neurological Unit at Southampton General Hospital, for some general checks on my state of health.  There was a last minute panic when I was told that there might not be enough nursing staff available to carry out the operation on the planned date.  However, I went in on the 15 April, for the operation to be carried early in the morning of Friday 16 April, just over three and a half months after the original diagnosis.

The Operation

There is a picture show of the operation, accessible from this site's home page.  The BBC were filming "City Hospital" and asked both my surgeon and me for permission to cover my case.  It provided an interesting diversion - being interviewed moments before going down to theatre!  As a result, I have video footage (about an hour) of much of the operation, which took about five and a half hours.  Fortunately, the tumour was easily accessible and was completely removed - a significant benefit of an early diagnosis.

Recovery

The full diary contains a blow by blow schedule of my eight days in hospital; only for the most dedicated of readers.  Suffice it to say, I was delighted to get home on Friday 23 April.  I spent the next two months recuperating.  I went for a walk every day, each day a little further.  I visited work after about six weeks and tried to go back part time after two months.  It was too early and I spent the next six weeks doing three half days a week.  My GP still told me off for doing too much too soon.  After four months I saw my surgeon and she told me I was fine and I returned to work full time.  However, I did take my annual holiday (of two weeks) two weeks later, so it was really five months before I was truly back to normal.

Life Returns to Normal

"Normal" is not quite the same as it used to be.  I am deaf in my left ear and it has taken a while to get used to it but it is not a disability most of the time.  When I get tired, my balance is not as good as it used to be - it feels as if I have had one drink too many but it is not a problem!  My taste has not quite returned to normal, the left side of my tongue provides a more acidic sensation than the right but that really doesn't matter.

Understanding

Acoustic neuromas are very rare but when I found a colleague, Peter Baxter, a month before my operation,  who had been through the removal of an acoustic neuroma six months  earlier, sitting in an office only 30 yards away from mine, I felt very much better.  After all, there he was, back to normal and back at work.  If you or anyone you know is about to face the same thing, give me a call!  Incidentally, I have met two others with a similar problem in the last four months, so perhaps it is not so rare after all.