Hi My name is Mark Fairhead.
I live in the UK. I’m at the grand old age of 48 and have Microtia & Atresia to my Right Ear. I believe it would be graded as level 2. I did not know the condition had a medical name until 18 months ago. I had been for some time having problems with noises & sounds in my head, which was later diagnosed as Tinnitus probably caused by the fact that I had a working inner ear that was enable to receive sounds. Through doing research on this I stumbled across Microtia. I had always just thought of it as a birth defect. I consider myself lucky that my little ear does ressemble an ear shape and has a small lob, it’s just halve the size of my normal ear with no hole !
I have never had or considered reconstruction, this was discussed with my parents when I was small child, but they decided to leave thing as they were for this I am internally grateful as I know of one person how had rather experimentle surgery in the 1960’s and has had problems every since. I was picked on at school (they didn’t call it bullying back then) you now the sort of stuff, name calling like ‘little ear – Big ear’ etc. but nothing that you wouldn’t expect from young children. The microtia side of thing never really effected my education, I did and still do lack self confidence. I was lucky as most of my childhood was through the late 60’s early 70’s when it was the norm for boy’s to have long shoulder length hair, this I carried through to the 80’s and only in the early 90’s did I have the confidence to have my hair cut short and around my ear I figured that I was by now old enough and bigger enough to deal with any insults etc. And by this point I had met and married my wife Katie. The biggest effect on my education has to be the effects of Single Sided Deafness – something I and my parents were not aware of at the time or made aware of, I did the usual thing and sat in the worsed possible position in class usual at the back ! I think in those day one did not like to make a fuss as no one was aware or unstood my problems, I also had the misfortune to be lefthanded and had teachers who tried to correct this by forcing me to write with my righthand – they failed (thanks Mum for your persistance with this).
I have never really considered the Microtia or SSD as a disability but I guess that’s what it is, It never really bothered me, well up until the tinnitus was diagnosed – I do believe I had been suffering from this for many years but was un aware of it. The one thing with being SSD from birth is you don’t know any different so it’s hard to know what normal hearing is, unlike when hearing loss happens via medical conditions, I have nothing to compare. I am lucky to have good hearing in my normal ear so I have never considered myself a hard of hearing, well until now. It’s only in the last few years that, and more so in the recent months that I have gained a true understanding of SSD I have always just got on with it but with the knowledge I now have I can fully understand why I have always struggled to hold conversation in group and noisy enviroment, struggle with spacial awareness, nearly be run over by traffic because I was unable to appriciate the direction of the traffic noise and have always wondered what stereo really sounds like ? I must say SSD has given me some advantages I always lay on my ‘good ear’ so very little noise disturbs my sleep.
As I said early my Journey into the understanding of Microtia and Single sided Deafness started with an appointment at my local health centre in about November 2010 I was actually having a bit of pain in my normal ear, (I have always taken any issues of infection or pain in my good ear very seriously) I explained about the noises in my head and after much poking and prodding and suggestion of ‘it’s probably just a build up of ear wax’ or ‘mucus in the eustachian tube’ after a couple more visits I persueded them to refer me to ENT. By the way at no point in the visits to the doctors was my microtia ear mentioned or discussed.
At my first visit to ENT I saw a lovely lady in Audiology who specialised in Tinnitus after discussion, it was of her opinion that I had tinnitus and that it was caused by me not having an ear canal or middle ear, what was happening was because my inner ear was working ok, it was always trying to send sound signals to the brain, but because it was not receiving any through the normal method of air flowing into the ear it was getting confused and my brian was unable to deal with this and filter out all the rubbish sounds that get transmitter to it, hence the whistling sounds etc. CT & MRI scans were later to confirm this as true the CT Scan show the amount of disformatity to the inner ear and the MRI show up how much of my right ear was actually working. At this appointment she told me about bone conductivity and BAHA hearing aids, what a revelation after 46 years I discovered that there was a method of having some of my hearing restored. To help combat the tinnitus I was given a sound generator which played relaxing type music to help mask the sounds when trying to sleep and I was given a dynalog Bone conductive hearing aid, it’s the one that hangs around your neck on a cord and the sound processor is on a metal alice type headband. This was a revelation I could hear sounds in my right ear for the first time in 46 odd years at the time it was quite scary and emotional. After trying and having great success with this aid and the benefits I gained, not just with the hearing but the tinnitus as well at subsequent appointment with Audiology the possiblilty of a BAHA was discussed, hearing tests had proven that I had good bone conductivety and trial wearing of a BAHA on a metal headband was successful. My case was put forward to the PCT for funding approval, this was granted sometime around sept. 2011. I then had an appointment with the ENT Consultant, Mr Hanif. We discussed the BAHA at length and at this meeting he spoke to me about a relatively new bone conductive hearing aid called the Sophono the Sophono differs from the BAHA by the fact that it uses bone conductivety via magnetic implant that are set into the masteriod bone just behind the ear, the aid then attaches by magnetic force rather then clipping onto an abutment. He explained at length the advantages and disadvantages of both devices and explained that I was and ideal candidate for the Sophono because of my good conductivity. He could give me any feedback from patient research as little exists. I said that I was very keen to have the Sophono as the advantages out weighed the disavantages. I was never that comfortable with the idea of having the abutment protruding from my skull and had concerns on the daily cleaning process and risks of infection on what is techincally and open site. Sound process wise there appeared to be very little difference between the Sophono & BAHA (Iwas able to assess this when I trialled the Sophono sortly after trialling the BAHA) After further meeting and the trialling of the Sophono it was agreed for me to proceed with the Sophono.
On Friday the 10th February 2012 I had the surgery for the magnetic implants a relatively simple procedure a C shaped incision is made behind the ear, the skin peeled back. They then drill to circular recesses into the skull approx. 10mm diameter and about 2mm deep the magnet is then set into these recesses and held fast by titanum screws, the skin is the pulled back and the site sawn up. I think the whole operation only last about 1.5 hours. Recovery is quick, although I stayed in overnight as a precaution as it was late in the day when the surgery was done. By the following morning the bandages were removed and I was ready to go home, no further dressing were applied and I was back to work on the Monday.
After 4 week and 4 days I went back to audiology to have the Sophono fitted and switch on.
It’s now been a nearly two weeks since switch on, I have worn it every day (approx. 14 hours a day) the comfort has been good I’m using the middle strength magnet and it seems very secure, it does leave an indent in the side of head but this has cause no soreness or discomfort, I hardly now it there. It’s been very easy to use as the magnet more or less self locates as it’s opposite poles to the implanted magnets, I then just pop the sophono to the spacer and it job done no cleaning of the site or anything all I do is give the spacer a wipe over with an antibac face wipe. In terms of Hearing – Wow what a difference, everything seems soooo much louder, my wife has noticed a diiference and has noticed that the television is at such a great volume !! the sound qualitity is very good, although some sounds… sound enhanced, thing like rustling plastic bag or paper. I went to my cycle club on Tuesday, normally I struggle with conversation as usual there maybe 2 or 3 happening at the same time and it’s hard to hear/conserntrate on one specfic conversation, with the Sophono on I was able to not only listen to and partisipate in conversation but also the other conversation were clearer to hear and not so distracting I think that’s all due to an improvement in spacial awareness. It early days yet as my brain has been used to receiving nothing in my Microtia ear for 48 years so there a fear bit of brain re training to be done I was advised that this could take up to 6 months. I also went to the cinema last night and was amazed how much louder it was ! it was an action packed type film so I didn’t get the full benifit of surround sound be used but I could pick up on sounds coming from the left and right – I guess that’s what’s called Stereo. I have also noticed an immediate improvement with my tinnitus during the day, At night it’s still there but I can’t change that as it not possible to sleep with the Sophono on. For anyone considering the BAHA route I would seriously suggest they look into the Sophono if it’s available to them and it is suitable – it is in my opinion so much more ‘user freindly’ and the time from surgery to switch is so much less, mine was just under 5 weeks.