Adult-onset Cholesteatoma

I was in the Royal Air Force when, in 1986 and aged 24, I first started having problems. To be honest, I didn't think there *was* a problem - it was just an occasional ear infection with the odd perforation thrown in and a feeling of my ear being full. In October 1988 the RAF medically downgraded me because of my on-going ear problems, so all chances of promotion were gone; I left the RAF in October 1990 at the end of my contract. I moved back to my family's hometown of Folkestone and before long, was seeing the doctors in the ENT department at Folkestone's Royal Victoria Hospital on an almost regular basis. In August 1991, I had grommets put in to reduce the bouts of 'glue ear' linked to the Eustachian Tube Dysfunction I had been diagnosed with, but though the grommets helped for a while, the ear infections and perforations continued.

Over the years my confidence took a battering because of my now obvious hearing problems and by 1996, my hearing loss was sufficient to warrant a hearing aid. My confidence soared, as did my ability to hear! I was in seventh heaven and on cloud nine! Sadly though, this was to end when infections of the ear canal started, and infections of the middle ear continued. I changed to the skeleton-type mold of the hearing aid, and this helped reduce the severity of the eczema-type inflammation I had all too often in my ear canal but I still suffered almost constant ear infections and regular perforations. I began to think that there was definitely something wrong with my ear. I think it was because of my own inability to be precise about what I was going through, that it felt like no-one (friends, family, or doctors) believed me. I had apparently fluctuating hearing levels, a fullness of ear that wasn`t always present, and an ache in and around the ear, particularly behind it – that wasn`t always apparent. I felt as though people felt I was making things up.

It was in the late 1990s that, due to my on-going problems, I was referred to the Senior ENT Consultant at the William Harvey Hospital, in Ashford, Kent. He suggested a CAT scan and surprisingly for me, at least Cholesteatoma was diagnosed. The relief was immense! With that diagnosis, a weight had been lifted off my shoulders. My illness had been named, it was real! I really DID have something wrong with my ears! Some time later, after more infections and perforations, I had a modified radical mastoidectomy, tympanoplasty and ossiculoplasty carried out.

My post-operative healing seemed to go by very slowly. I saw the doctors on a two- or three-monthly basis and at one time, I was asked how I might feel about further surgery. I immediately declined any more surgery, the memories of the vertigo and pain following my recent operation were all too fresh. However, over the next few years I was to regret that decision, as I suffered further bilateral ear infections and more perforations and more hearing loss (though with no evidence of another Cholesteatoma).

By 2001 I had learned about BAHA and I asked the ENT doctors about it; sadly I was told I wasn't a suitable candidate at that time.

In May 2003, I had an appointment to see the ENT consultants on one of my regular visits to the hospital. I had waited quite a while (not like on a normal clinic day) so I enquired when I might actually get to see the doctor. I was told: "As soon as a BAHA headband becomes available." That was when I first learned I was being considered for implant! WOW!! I was so very excited!! Eons later, it seemed, I got the BAHA headband, and I wore it for half an hour. I was amazed at what I could hear: there were birds singing outside, wheels squeaking as beds were pushed along the hospital corridor and I heard three conversations going on at the same time and could make sense of them all - I could hear everything and it was so very clear! There were footsteps around the corner in the corridor and many things that I had forgotten made a sound, like people breathing!! Ohhhhhhhh, it was wonderful and I was ecstatic when the Consultant agreed I would be a suitable candidate for BAHA and placed me on his waiting list.

I had my BAHA surgery on 4 November 2003 and all went well with the operation itself, which I had carried out under local anaesthetic. The atmosphere in the operating theatre was so relaxed, and we were all laughing and joking. Lyn, the chairperson of BUSK, held my hand throughout the procedure.

About two weeks after the operation, I suffered a sudden and bad infection of the right ear and my eardrum perforated. This was unrelated to the actual surgery, but it was of course one of the reasons I had had the BAHA surgery in the first place, I suffered constant perforations and so couldn't wear my air-conducting hearing aids comfortably or to any great benefit. On this occasion as before, I went to my GP, who prescribed me the antibiotics and painkillers that had become my friends over the years.

Unfortunately, the ear infection didn't respond to treatment as it had so many times before. I became very ill and suffered from prolonged infection and constantly perforating eardrums for the four or five few weeks during which time I was referred back to the hospital several times to see the emergency on-call ENT consultant. I was in extreme pain and had problems with my eyes too; I couldn`t balance very well at times, as I couldn`t focus for the pain and vertigo. The operative site itself also got infected resulting in two abscesses which burst, finally leaving the wound to heal slowly. This resulted in my being somewhat unsteady on my feet, unable at times to walk unaided up and down stairs; walking in a straight line and turning quickly can be a challenge at times. I went to see the specialist again in January 2004 to make sure that all was well with my ear (post perforations) and the operative site (post infection), and it was clear that everything had finally healed.

On 11 March 2004, after a wait of 19+ weeks post-surgery, I was issued with my sound processor. This was the second and final stage of the bone-anchored system and procedure, and since that date, I've been on cloud nine! Just after I was issued it, I rejoined other BAHA users in the hospital room that we all meet in, and I sat there, listening, playing with a serviette, totally astonished that I could hear the paper rustle. I could hear the sound of my hair, I could hear my coat, and I could hear the birds outside. I could hear the squeaking of the soles of shoes on the ground as people walked past me, and I could hear several conversations, and shock of shocks, I could understand them, too!

Before I got my BAHA, I was usually off work with an ear infection and perforation for a day or two (possibly even more when the infection was particularly bad) every 5-6 weeks. Since December 2003, I have had only two infections but have had no time off sick; in this respect, BAHA has proved its worth to me already. My quality of life has improved vastly.

I went back to see the ENT specialists on 13 May 2004 and it was recommended then that I have a longer abutment fitted, as my sound keeps cutting out; it feels like someone keeps turning the sound off. This is likely due to the fact that I have thick skin on my scalp close to where the sound processor sits, and I also have very thick hair around the abutment. I'll get the longer abutment when the order arrives, and I hope that will be soon; hopefully all will be sorted within a couple of weeks, it would be nice to have it all working well. (Note: October 2005 and I`m still waiting!)

I purchased the directional microphone and have found this tiny piece of technology to be excellent in helping to discern where sound is (or isn`t!) coming from. In respect of the audio adapter, I listen to sounds on my computer (music, voice chat, etc.) by plugging one end of the cable into the headphones jack of my computer and the other end into my sound processor. With regard to the telecoil adapter, I was fortunate enough to have been sponsored by the Open University, who purchased this for me to enable me to benefit from the OU lectures relevant to my course. The OU also bought a microphone for me and this is used by the tutor and I can hear via the telecoil adapter which I plug into my sound processor.

As for every day use of the BAHA, I am still getting used to hearing with it even now, it's a totally different way of hearing, but I'm definitely getting there. There are sounds I don't recognise, noises I had forgotten, and direction finding is a real problem so I am extremely careful when I go out of the house.

As for actually hearing with a BAHA, sometimes, because of the constant exposure to noise that I couldn`t hear before, it can be just a little too much, and I get the occasional headache. When this happens, I take the sound processor off and enjoy a little quietness. Before too long, though, I'm plugged in again and enjoying the sound of the world around me.

BAHA , it's the best thing since sliced bread, and yes, despite everything, I would do it all again.

Karen
Folkestone, Kent, UK



Pictures:


( 1 ) The day of surgery




( 2 ) The day after surgery



( 3 ) About 3 weeks after surgery



( 4 ) June 2004  you can`t see my BAHA