NEXT Dear Kaye, Thanks for your e-mail, you are having and have been through a rough time, I am so sorry. This meniers thing is just so unpredictable have meet some who say they have had it, and I ask about thier problems and it turns out they have had a virus, or BVVP or what ever it is called, I have only meet one person who truly does have it, but only for a very few years and she has not ended up like us, I hope she does not, I would not want to give this to anyone. My problems started in September 01, although now thinking about it I had been rather unsure of my balance, but nothing to concern me, just thought it was a sign of getting older. I had ear wax in both ears, and one evening after having a bath, my hearing clogged up. I went to the GP, who said to put drops in, and make an appointment in a week to have them syringed by the nurse. Unfortunately the nurse took a two week holiday at the end of the weeks wait and the doctors said it was really beneath them to do the syringing. After the second day of waiting (after I should have had the syringing) I was working on a roof (I am a builder) and was hit with sort of wow thing, hard to describe but I momentarily thought I was falling. This carried on for 2 maybe 3 days, about 20 times a day. I was working very hard and just thought I was overdoing things. At the end of the third day driving home the world started to gently spin, and I could not see the road signs properly or focus on more distant objects. I went back to the doctors, to plead that he syringed my ears, I was ushered into a stand in doctor, who thought I was not genuine. He refused to syringe the ears, saying the wax was to hard, but that was just an excuse, and to put me off he suggested he could pick it out with a steel wire, so of course I refused this kind offer of help ! He gave me some vestibular suppressant pills and said to come back in a week, -- all the usual doctor blurb. The nurse did the syringing and I asked her to do it again in one ear as it still felt under pressure and I could not hear that brilliantly. She said to wait a day or so as it was probably a little bit of water left in the ear canal. The next day, I dropped my wife at work, drove home, got out of the car and fell over. when I got up again, I was very wozzy and when I walked to the house the world was bobbing up and down. After a few hours of trying to keep my balance, I had to retire to bed and stayed in the house and bedroom for about a week, but nothing improved or got worse, I was brain foggy, confused and kept having these wow attacks except they lasted a little longer. After the week at home, I went to the doctor, he immediately diagnosed meniers disease ( he has a hearing loss and vestibular problems), was put on serc, and said if I was not improved to come back in a week. ( I was getting a little bit fed up with being told to wait a week at each visit by then) Well the serc did nothing, and I was back in his office after the week with the balance and hearing problems getting worse. Up went the serc and a letter to the ENT department. I was seen very quickly, and that is unusual for the national health system over here, hearing tests showed a sloped curve , bad in the low ranges and not to bad in the upper ranges, but everything a bit down. The consultant dismissed the meniers diagnosis and thought it more likely an acoustic neuroma and a n MRI scan ordered. I continued work, I was putting in a bathroom for a client and just had to try and get on , stumbling about the place. The hearing in the right ear gave out completely my the time of the MRI scan a month later, but I was coping better with my balance, but still had what I later discovered to be oscillopsia, which made driving very troublesome. During the wait for the MRI scan, I noticed the hearing in the good ear was poorer. The locum GP said I was probably imagining it and was getting worked up as if the hearing was getting worse it would have happened weeks ago. He thought is was a virus, if I had seen my regular GP, I am sure that I would have been straight into hospital. On the day of the MRI at the begging of December, I woke up and for the first time knew for sure that the hearing was going, I could hear conversation, but the TV was quite distorted, and my balance had taken another dive. I had the MRI scan and had considerable difficulty in getting up, we called into the ENT dept but no one was there. The following day, I went back to work and had difficulty in understanding the client, by eye sight was too unstable to read the tape measure and I could not saw a straight line. My wife phoned the hospital and I was admitted that night and given carbogen and high doses of steroids. As I woke the next morning, I had sudden vertigo, I just felt as I was vertically spinning into the ground, but I was not sure which way I was up. This eventually ceased and I tried to venture out of bed, but could not really stand up. The nurses were usless and just did not understand what was going on, my hearing had taken another huge dive and the doctors had to start speaking very loudly for me to understand. In addition to steroids and carbogen, I was put back on serc, and two other powerful vasodilators. Nothing helped and after a week, I could not stand the hospital any longer. The pure tone hearing tests showed that I had lost about 60% of the hearing, ranging from nothing in the low frequencies to not much left in the high frequencies, but at least I could still just about understand speech. Tinnitus, now started off loudly in that ear as well. Music was now impossible to follow, the tv I could only understand with headphones and some noises like paper being scrunched up was unbearable. My balance and oscillopsia were were so bad that I did not return to work until March and really that was a mistake. I fought and fought to get my balance back, stumbling and falling but I was going to crack it. Every day in December I saw the consultant. The hearing had more or less stabilised, some days I could hear better than others, but the pure tone test ( which I now think, give little indication to what you can actually hear and understand) showed no fluctuation. I was taken off the steroids and continued with the three vasodilators and a betablocker. Within two days the hearing became worse, my face swelled, headaches, nerve pain down the side of my head and face, back to the aural fullness. I could by now only make out the TV with headphones at max volume. The low salt diet and diuretic was added, but still no improvement. I started searching the Internet, starting with meniers disease, but no one had had the fast progressing deafness, sure I had had all the other symptoms, ( except the throwing up, but I have a cast iron stomach) but no one had the oscillopsia. I can across AIED and bilateral vestibular loss, which seemed to fit the problems more closely. By now I was under the care of a ENT neurologist, he maintained it was bilateral meniers and every time I mentioned that I had this oscillopsia, he was very quite and my hearing was so bad, I just got fed up with talking about any of it. I later discovered that this massive bilateral vestibular loss is very rare and many people have enormus difficulty in getting about and that he did not want to burden me with anymore bad news. Anyway, the hearing just got worse every day, I measured it against our very loud clock. At first I could just hear it at the entrance to the bedroom door and each day I had to get closer to it. I was now very freaked out. I have a young family and am the breadwinner, my wife is very involved with running a pre-school group, it is a charity and there is very little money in looking after kids. Our meagre savings were just about gone, and I was not eating and just sort of wasting away. This is so unlike me, I always try and stay positive and active. I was put back on steroids at the beginning of January, this again seemed to stabilise the hearing, but it had got so bad, everything was just a jumble of sounds, still had the hyper sensitivity to sound and at this point I had to start lip reading, which was not as difficult as I though. A little noise although not making any sense still helped. I came off the steroids just a few days later and by 10 January woke up to hearing nothing. I could just about make out a kitchen cupboard door slam and a big heavy lorry go by if I was right next to it. I tried the most powerful hearing aids, but they did nothing at all. I could just hear myself if I stuck my head under the water in the bath. Two days later that was it. Concorde sometimes fly’s over our house. Even at considerable height, the noise is awesome but I could only feel the noise vibration in my chest. I could not hear the loudest of sounds. This was very frightening, even the mixed up noises were a connection to the world, to be aware of nothing is very hard to describe. My last visit to the consultant in February after balance tests, confirmed bilateral vestibular loss and he was at last willing to talk about it. He reckoned there was little if any function in that department as well, he was surprised that I was even able to walk on my own, all be it bouncing off the walls and clinging on to my wife, walking very slowly with legs wide apart. I said to him that at my first appointment in the clinic that I talked about bouncing, shifting vision and the inability to change focus quickly and this surely should have suggested, an ongoing bilateral loss, he just retorted that he in 40 years had never seen anything like it, only one other case vaguely resembled what had happened to me, and that was slower and meniers disease for sure. By then some specialist blood test had come back ( they had taken a month !) and showed auto antibodies for a thyroid disorder and Rheumatoid arthritis. I had a very over active thyroid gland two years previously, which was at the point of life threatening and this was treated with a radioactive drink, that has killed of the gland and I take a hormone replacement to keep the body going. Fortunately, well not yet, or ever! suffer from Rheumatoid arthritis, so he at last came round to thinking it was immune mediated meniers. Having read on the Internet, there are tests, although not conclusive for immune ear problems, the Rheumatologist had not the faintest idea what to look for. The ENT consultant is a lovely chap, most caring and he immediately requested funding for a cochlea implant. The balance and oscillopsia would improve but it was unlikely I would ever be normal. He is right, both have improved a little, mostly balance, I still wobble about, and have difficulty changing directions and I do not cling on to my wife so much, except when it is poor light, or busy places. In darkness I have to be held usually by two people. The oscillopsia when I came out of the hospital in December was truly disturbing, on the way back in the car, all I could see was a blur. I still have it, the slightest head movement blurs the vision, the view just seems to lag behind and takes time to catch up, and walking or riding in the car, the view just bounces, closer object bounce less than looking further afield. I had to give up all by big contracts that I had to fight so hard to get, this just added to the general feeling of despondency, and being self employed big contract just don’t turn up that often. However I have returned to a little work, I think that the self employed attitude has helped me overcome the difficulties, I am just not going to be beaten. I am now much slower and uncompetetive and get very tired after a day at work. I just try and do 2 or 3 short days a week at most. I still feel floatly and disconnected with my surroundings, I guess a bit like looking on at myself instead of being in myself. Another interesting thing has happened, I quickly accepted the troubles and did not get depressed or angry. It has made me realise I am not special in the sence that I am cleverer or better than others. My perhaps unhealthy over interest in work has waned and I enjoy being at home with my family. I also have a desire to help others, I am not sure yet how this will come to pass. I will wait to see how the implant helps me over the next few months and then I can get all my problems put to one side and then see where I can fit in with others. Over here the implants are paid for by the national health service. We all pay about 10% of our wages to the government for this and on top employers pay another contribution. So anybody who needs help gets it, but the reality is very different across the country. I live in the south east of the country, which is the wealthiest area. I have had a very good service from it, someone from the north of the country could easily wait four months for a specialist appointment, unless of course it was life threatening, where in the south I waited 3 weeks. six months for an MRI scan, one month down here. When it comes to specialist stuff like cochlear implants, the money comes from a patient care trust of which there are about 250 in the country. So if one lives in a poorer area they may not have funds available for years. Also and quite rightly children come first, so it is pot luck if one agrees to get funding in a relatively short space of time. I have been so very lucky. At first the patient care trust were not sure they could help, but the ENT consultant applied for the money at the end of the financial year, and there was money in the fund that if they did not use up, then the next year they receive less. The funding is done in stages, usually requested from the implant centre, so I was already one step ahead. There then follows various tests and if one meets all the criteria, the bulk of the money is then requested for the operation. Again this can take months usually a year to a year an a half so by the time of the operation it’s been two years from first consultation. Everything went very quickly for me. Apparently total deafness is unusual, so most people have to undergo trials with the latest hi power hearing aids, that are not on the national health service, and physiological counselling. The test were done quickly and within two months was offered an implant. The previous MRI and CT scans did not show the cochlea's well enough, and there was some concern that the cochlea's were narrowing. No one knew why. So another quick MRI scan and three weeks later was under the knife. It was a difficult operation and I woke up seven hours later, no real pain, but my butt was completely numb and remained like that for days. Tinnitus was absolutely apauling in the first few days. It came in continual waves from nothing to a head rattling roar. It has settled down now, but is louder than before, but not too intrusive. Taste on one side is strange, sweet things have a very metallic taste, but that too is very slightly improving. Perhaps the most distressing thing was I had decomensated with my balance and oscillopsia, it was back to hanging on to my wife, The hospital did not want me to leave the next day, but I assured them I was quite familiar with balance problems. This too has improved and I am nearly back to my usual wobbly self. I understand very well the distress of garbled hearing it was the most awful part of this whole dam disease and you can’t get away from it. I had another episode whist in a shopping mall just before Christmas, my wife had left me on a bench and I was stuck I just could not get out of the place, I found a corner of a shop and just squatted there with my finger rammed into my ear. I later on used a mouldable ear plug and that really took the sting out of it. They say you loose the rest of the hearing in the implanted ear, so that maybe the relief you need, if they can sort out your other problems. Funny thing, but with this racket going on I prayed to become deaf, well the prayer was answered. Take heart the cochlea implant people said that the outcomes with implants for meniers and auto immune people are usualy outstanding, although it will not be like the way we heard, I'll let you know what it is like when I am switched on just before Christmas. I am so sorry you really have had a bloody awful time, and what with your eyesight as well, how or why did that happen.. I will end now, if you manage to get this far! but please do ask me if there is any further info you would like to know or just to vent. Do let me know how you are coping. Take care and I do hope that things start to improve for you. Best wishes Robert |
| ROBERT'S JOURNEY |
| 12/12/02 |
 |
| FOR NEXT PAGE CLICK ON PIC |