Yvonne's story is not typical. She went for treatment (FSR) because of an increase in symptoms with no increase in growth.  Also, her symptoms were not the common ones; luckily, they are now gone.  Perhaps the first British AN patient to have been treated at SIUH, Yvonne has started to write a book about her AN experience; here is the beginning of it.

I was diagnosed in July '95 with very few symptoms, just a very slight hearing loss and distortion on the affected side. I still smile when my ENT consultant tells me I was lucky to obtain an MRI with so few symptoms, as he put the cause of one sided hearing loss down to shooting! As in holding a rifle next to the offending ear. The fact that I have never, ever, held any kind of firearm in my life doesn't seem to bother him!! (This is Britain....)

Anyway I decided to forego immediate treatment for the reasons so many others state - the treatment seemed worse than the disease.

Another MRI around 9 - 12 months later showed that the AN had grown from 1cm to 1.2cm. But the symptoms were only slightly worse - so I hung on. I further one 6 months later showed no change in size.

But soon afterwards - quite inexplicably - in April '97 my symptoms started to get much, much worse. Not in terms of hearing, distortion, or tinnitus - but headaches!!  Major ones that lasted days on end. I then couldn't drive for more than half an hour - and couldn't stay awake as a passenger. Car journeys left me as a complete wreck! I noticed I was walking into door frames on the affected side, my typing was appalling and everyday was a major battle just to get through.

I thought of asking for an MRI but decided not to. Whether the AN had grown or not seemed completely irrelevant, my body seemed to be screaming at me to do something about it. So in June '97 I decided to have FSR at Staten Island, and was treated there in September '97. I expected that the MRI taken immediately prior to treatment would show evidence of growth - but there was no change whatsoever! Weird - or weird?

Yvonne in her treatment helmet

Now, three years later, the headaches have largely gone. Huge sigh of relief!! They started to fade about 3 months after treatment and are now never as bad as they were. Sometimes I get a slight headache, especially after a noisy situation, or a sudden drop in atmospheric pressure, but otherwise they're not there.

I don't walk into door frames anymore! My typing is better, but my spelling's iffy (no doubt caused by age not the AN?!).  And a 'plus' I had a couple of months ago - I actually drove for 2 1/2 hours. I haven't been able to do that for SO long. OK so I'm not back to the way I was way back in 1990 or so - but I am a lot, LOT better than I was in 1997.

Yvonne Tommis <yvonne AT mcmail.com>
Great Britain
19 September 2000

Uphill all the way
a book by Yvonne Tommis

Introduction

I chose the "Uphill all the way" as the title of my book because this is probably the way I would summarize my AN experience. From the difficulty involved in obtaining the initial diagnosis through the considerable difficulties involved in finding an alternative treatment to surgery. Some of the problems were completely unexpected, and upsetting; when people I had assumed would be supportive, were in fact the opposite.  It is ironic that the actual treatment itself was the easiest part of the entire experience!

My book is a description of the lonely road I travelled, and I hope will be of help to others who find themselves similarly isolated.  I'd be really interested in getting a reaction from people, so I am including my e-mail address.

Chapter One: Bangor

"Did you go to many discos when you were young?" asked the ENT consultant, her eyes never leaving the paper in front of her. I wondered then, and was to do so many more times in the future, why consultants seem to prefer reading about a patient, rather than talking to them. I always thought it was ill mannered to read and talk to someone at the same time.

"No," I replied, wondering if she’d read the part of my form that stated ‘Occupation: Part-time teacher of piano for the University of Wales’. Musicians value their hearing.

"Well some degree of high frequency hearing loss is normal at around your age." She continued.

"So why is only my right ear affected?"

"You also do have a lot of wax in your ears."

"Yes," I replied "But I’ve been told there is more in my left ear and that one’s fine." She looked in both ears, asked me to repeat various words, and to walk on the spot with my eyes closed. Yet more questions followed about when symptoms first began, whether there was a history of deafness in the family. She seemed to be ignoring the most obvious features; the distortion and the one sided nature of the problem.

"What really puzzles me is why my right ear causes music to distort, and why the telephone dialling tone is a different pitch in one ear to the other."

"Well the distortion could be caused by something called accoutrement." she ventured, at last she seemed to be taking me seriously, to be thinking of things which could be the cause of the problem, rather than attempting to dismiss it. Although I didn’t fully understand her explanation as to what accoutrement was, I understood enough to have what was becoming a familiar response:

"OK, but why is only one ear affected?" I was beginning to get quite exasperated, why was no explanation being put forward? I could understand why my GP didn’t know what the problem was, but this was a department full of Ear Nose and Throat specialists, surely they must know? If she did she wasn’t telling me because every time I asked what might cause something to happen in one ear and not the other I got no response.

What I didn’t know at that time, but presumably as an ENT specialist she did, was that I was presenting one of the classic symptoms indicating the presence of an Acoustic Neuroma; one-sided hearing loss. I also now know that by asking me to walk on the spot with my eyes closed she was testing my balance, which at that time was fine. Balance problems are another indication of the presence of an Acoustic Neuroma.

I had first noticed the symptoms some four years previously. It started as an intermittent distortion, only noticeable when teaching the piano, and even then not all the time. Gradually over the years it had become more frequent, and had become apparent in other situations. Although I thought it a nuisance, and somewhat unfortunate, I wasn’t overly concerned, believing it would go away eventually. Maybe that was a rather complacent attitude but it still tends to be my approach to most medical problems; first of all see if it takes care of itself, and gets better. I also wasn’t sure if anything could be done about it anyway, and never imagined it could be an indication of a tumour.

It was the telephone dialling tone that finally persuaded me to seek medical advice. I always hold the phone to my left ear, and because of that was no doubt unaware as to the extent of hearing loss in my right. One day I put the phone to my right ear, and was amazed, and concerned. The pitch of the dialling tone was different. I checked and re-checked but the result was the same – there was a difference of around three notes on the piano between the two. I then thought that perhaps everyone had the same phenomena, so I asked my husband to listen. He heard the same pitch in both ears. I was completely mystified, being totally at a loss to even begin to understand how one ear could hear the same sound at a different pitch to the other one. I also could not understand how the two differing pitches were reconciled when listening to music, or was that the cause of the distortion? On a lighter note I wondered if I’d finally discovered why I had always been unable to sing in tune! I still was not unduly alarmed; maybe there was a straightforward explanation. As I had stopped studying Biology at school as soon as possible, because of an intense dislike of dissections, I had no real idea of how the ear worked. One thing was apparent though, this problem was not just going to ‘go away’, I had to seek medical advice.

A few days later I saw my GP, who looked in my ears for evidence of infection, couldn’t find any and booked me in for a hearing test with the nurse. Just in case there was something he couldn’t see I was also given a nasal spray and ear drops.

The nurse carried out the hearing test in a consulting room in the surgery. I was given a pair of headphones to wear and asked to indicate when a sound was audible. The sound was a pure tone of various pitches, and volumes, sent to each ear in turn. As she said, it wasn’t an ideal test, the general noise of the surgery could still be heard in the background, but it would give an indication as to whether or not further investigation was necessary. At the end she showed me the results; a very definite high frequency hearing loss in my right ear. Her opinion was that I would be referred to the ENT clinic at the local hospital, which I duly was.

And so I arrived at the ENT clinic fully confident that they would be able to tell me the cause of my ‘strange’ hearing problem. On arrival I had been given another hearing test, this time in an eerily sound proofed room. The room was so well sound proofed as to be completely quiet. To go from the bustle of the waiting room into silence was quite odd. The test itself was also more extensive than the one carried out by the nurse. The first part again consisted of indicating when I could hear a tone in each ear, this was followed by listening for a tone in one ear while a masking, rushing sound was played in the other. For another part of the test a different kind of headphone was used and placed on the bone behind the ear. I’m not sure what the different tests were for, but the results were sent with me to the consultant.

They did not, however, apparently provide any useful information. The consultant agreed I did have a hearing problem in one ear. I did not need to visit a specialist to be told that.

I knew the consultation was drawing to a close, unsatisfactorily, when she suggested I should have a test to check for the presence of accoutrement, and also take some ear drops to get rid of the wax. At that point it seemed as if she didn’t know any more than my GP, but I felt that she must. A GP cannot be expected to have in depth knowledge of every part of the body, which was precisely why I had been referred. These people were specialists, surely they must have some idea of what was wrong? I could not be the first person to be referred with distortion in one ear. Also she had never actually said that she didn’t know what the cause of the problem might be. She had been very evasive but had never actually said "I don’t know, you’ve got me beat on that one." Or whatever the equivalent medical speak might be. If she had said something along those lines I would most likely have taken the ear drops and left. Although I cannot actually remember thinking "She knows more than she’s saying" maybe I was in some way aware of the possibility, and it was that awareness which made me feel so frustrated when the only treatment she suggested was exactly that which my GP had already tried.

"My GP gave me a nasal spray and ear drops when I first saw him." I explained, being aware that I was perhaps now beginning to sound as exasperated as I felt.

"These are much stronger than the ones he would have given you."

"But I still don’t understand why all this is only happening in one ear." As I spoke she was already writing out the request for another hearing test, along with the prescription for ear drops.

"Well, I suppose we could send you for an MRI scan just to rule out anything more sinister." she finally conceded.

At last, a test that wasn’t a hearing test! I felt as if in a way she had said "Well I don’t know what the problem is but this scan may unearth it." I wasn’t exactly sure what a MRI scan was, or what they were used for, but I knew that scans in general can look at ‘things inside’ and that was sufficient for me.

It never crossed my mind to ask what the ‘something more sinister’ might possibly be, it never occurred to me to ask her what the MRI scan involved. It was obvious she wasn’t going to tell me as by now the nurse was taking away my notes and the prescription was in my hand. However I was not concerned. I had ‘had enough’. I just wanted to be out of the hospital and home as soon as possible. I wanted peace.

It’s said that ‘The British’ don’t like to complain, and don’t complain enough. That may not be true any more, it may never have been true, but it certainly is true for me as an individual, and I know many people for whom it is also true. In my case childhood memories of waiting with my mother while she complained about an item of clothing in Marks and Spencer linger on. I’m sure she was quite right to complain, but I didn’t like fuss then and I still do not like it.

I most certainly viewed medical people as ‘experts’, they knew what was best, it was their job. My medical history, such as it was, was one of me being a ‘good patient’. I did not ask questions, other than very polite innocent ones, and I did as I was told. In addition I was, and still am, a conflict avoider. Conflict is upsetting, uncomfortable, difficult to get over, and therefore to be avoided if at all possible.

In short, I’m just like the majority of people; all I want is to be left in peace to get on with my life, if people leave me alone I’ll leave them alone.

So what made me different that day? The ‘good patient’ response would have been to take the prescription and say "Thank You". I asked far too many questions, and was even impolite enough to keep asking the same one repeatedly. I prolonged the consultation after the point where a ‘good patient’ would have left. I was not a ‘good patient’, why not?

A combination of different factors. Firstly, common sense. Both my ears had always been places together and I had not been given a satisfactory explanation as to why one should behave differently to the other. Secondly, the birth of my son. He was born 8 weeks prematurely and at the time I asked every medical person I met "What are the possible long term effects of prematurity?" I was constantly reassured that he would be fine, that by the time he was 3 years old he would have caught up lost ground. When he was 18 months old he was finally diagnosed as suffering from Cerebral Palsy, and registered disabled. I then discovered that there is a high incidence of Cerebral Palsy among premature babies. The medical people I had asked had avoided telling me something they most certainly knew, that he was at an increased risk of suffering from Cerebral Palsy. I’m sure they didn’t tell me because they didn’t want me to worry, he could have been fine. The down side of them not telling me was that it was much more of a shock, and therefore more difficult to cope with, when he finally was diagnosed than it would have been if I had always known of the possibility. It was the health visitor who instigated the diagnosis, so enabling him to have much needed physiotherapy. But what if she had not been so vigilant? What might have happened then? That whole experience must have fundamentally shaken my belief that medical people were experts, that they knew what was best. It most certainly resulted in a breakdown of trust. I no longer assumed doctors would tell me all relevant information I asked for. During the ENT consultation I did not consciously think "I’ve been denied information before, therefore I could be denied it again", but I behaved as if I did.

Thirdly, instinct. I knew that something was happening in my head. I knew it was not ‘normal’ to have such symptoms. This was not flu, or an ear infection, virus or bacteria. I didn’t think it serious, I did not even think that it could necessarily be treated. I just wanted to know what it was.

Looking back now on that initial consultation it is interesting to ponder whether or not I should have been told that I might possibly have a tumour which was causing the problem. I’m sure the doctor’s response would be that she didn’t want to cause unnecessary worry, that Acoustic Neuromas are very rare. They are indeed rare but I wonder how many people with unexplained one-sided hearing loss do not have one? OK they are rare in terms of a percentage of the population, but are they so rare among that particular group of people?

I still do not understand why the consultant was so reluctant to discuss any of the likely causes of my one-sided hearing loss. It was obvious that it hadn’t been caused by exposure to environmental factors, such as gunshots; therefore it must have been caused by something ‘going wrong’ in my ear. I have since learned that Menieres disease can also cause one-sided hearing loss; perhaps there are other diseases that do also. Why did she not discuss these possibilities with me? Why was it so difficult to be referred for a MRI? What was to be gained by waiting until my symptoms were much worse? Did she think they might not get any worse? In which case why didn’t she say that they would monitor my hearing at intervals?

Did she not say anything simply to avoid having to use the word ‘tumour’? Did she not want to refer me for a MRI simply because they are very expensive? Or was she waiting until my balance or facial nerves were also affected in order to confirm the presence of a tumour? Well the MRI would discover the presence of a tumour anyway.

So many questions, and obviously no answers as I have never seen her again. I would like to know the answers, but cannot believe they would convince me that ear drops were the best course of action at that time.

©

Last Edited: Friday, November 01, 2002