Kazzy’s Story – Last Updated January 2016
I was in the Royal Air Force when, in 1986 and aged around 23 or 24, I first started having problems. To be honest, I didn't even think there *was* a problem – I just seemed to have the occasional ear infection with the odd perforation thrown in, coupled with a feeling of my ear being full. The infections and perforations got more frequent, and in October 1988 the RAF medically downgraded me because of these on-going ear problems, so all chances of promotion were gone; I left the RAF in October 1990 at the end of my contract as the RAF wouldn’t extend my service. I moved back to my family's home town in the sound-east of England and before long was seeing the doctors in the ENT department of the local hospital on an almost regular basis. In August 1991, I had grommets put in to reduce the bouts of Glue Ear I had, which was 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 bad enough that I was issued with an air-conducting hearing aid for my right ear. My confidence soared, as did my ability to hear; I was in seventh heaven and also on cloud nine! Sadly though, this was to end when infections of the ear canal started and became a challenging new norm for me, and the infections of the middle ear and perforations of the ear drum 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.
During this period, my lack of hearing affected me in a very negative way. I withdrew from my friends; I found myself coming up with all sorts of excuses as to why I couldn’t or wouldn’t go somewhere or do something. I couldn’t hear in pubs and clubs or at parties so no longer went out socially with friends. I couldn’t plan outings or holidays as I didn’t know if I was going to be ill, so I stopped travelling away from home. Even with hearing aids, I couldn’t hear well enough in large rooms/halls for it to be safe for me to be alone with my Brownies, so I gave up helping to run the local pack – I felt too much of a burden to the other Adult Leaders to be of any worthwhile help. Life was not good for me during this time.
It was in the late 1990s that, due to my on-going problems (coupled with an increasingly offensive smell emanating from my worst-affected ear) I was referred by the ENT team I had come to know so well over the years to the most Senior ENT Consultant at the William Harvey Hospital, in Ashford, Kent. He immediately suggested a CAT scan and almost immediately, 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! Sadly, I really did have something wrong with my ears! Later that year I had a modified radical mastoidectomy, tympanoplasty, ossiculoplasty (Canal Wall Down) and a meatoplasty carried out, all in an effort to remove the Cholesteatoma and all trace of infection from inside my ear. (The meatoplasty itself was to widen the ear canal to afford easier access to the ear for the in-office toilet-suction cleaning that would be necessary in the months and years to come after all my ear had healed from the surgery.) The aim of this surgery is always to produce a ‘clean, dry ear’; restoration of hearing (through successful repair of the ossicles) is always secondary. If the latter happened, great; if not, no big deal – I could wear hearing aids. I have always said I can cope with the deafness; I just wanted rid of the pain and disruption to my everyday life.
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 quick decision, as I suffered further bilateral ear infections and more perforations and more hearing loss (though with no evidence of another Cholesteatoma).
I get my ears inspected regularly and I also have them hoovered out on a regular basis, in order to get rid of the debris left from infections and perforations that are still the bane of my life (still the bane of my life, yes, but nowhere near as bad or as frequent as before the surgery!) Yes, the microsuction (hoovering) of the ear can hurt, but it is not always so very bad. (There are people six feet under who would love to experience it rather than what they have, so what’s to complain about?) It’s a choice of either having the hoovering done, or of suffering the awful pain of more frequent and worse infections and perforations and possibly repeat tumours in the ears because the debris has been left in there from previous episodes, so the easiest option is simply to put up with the hoovering.
I still (even now in 2015-16) visit the ENT specialist – once a Cholesteatoma patient, always a Cholesteatoma patient, I guess.
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 – I wasn’t deaf enough to benefit from it.
In March 2003, I had a really bad infection – so bad that I took to my bed, barely able to move, for four long days; I was in so much pain that even touching my hair hurt. Finally, though, the meds worked and I was eventually back to my normal self. Only something was different… very different. I noticed a distinct hearing loss and so was referred back to the hospital to see the Consultant who had previously operated. My appointment was in May 2003.
At that appointment, I had to wait quite a while to see the doctor (not like at a normal clinic appointment) so I enquired when I might actually get to see him. I was told: "As soon as a Baha headband becomes available and you’ve been able to test it." That was when I first learned I was being considered for Baha implant surgery! WOW!! I was so very excited!!
Eons later, it seemed, I was fitted with a Baha on a headband. The headband was similar to a metal version of a young girl’s Alice band hair accessory and it was extremely tight around my head. I got to wear it for about half an hour and I walked around, both inside and outside the hospital. I was amazed at what I could hear with this piece of technology: birds were singing up in the trees; someone remotely unlocked a car door in the car park; wheels squeaked 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 almost everything and it was so very clear… different, but clear! I could clearly hear footsteps around the corner in the corridor and so many things that I had forgotten made a sound, like people (me!) breathing!! Oh, it was wonderful and I was absolutely ecstatic when the Consultant agreed I would be a suitable candidate for Baha surgery 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. Though I had a good amount of my hair shaved off for the surgery, the worst part about the whole surgical procedure has to be the injections of local anaesthetic into the operative area of my scalp – not really so very bad, but they brought tears to my eyes! Once the injections were done, though, and the local anaesthetic had taken effect, the surgeon started his work. The atmosphere in the operating theatre was so relaxed, and we were all laughing and joking. Lyn, a friend and the chairperson of BUSK (the then active support group for Baha Users) held my hand throughout the procedure. She had previously been a nurse at the hospital, was well known to the surgical team and was a member of BUSK and a Baha-user herself. Apparently, there was music being played, but I couldn’t hear it, as my head was turned so that my hearing ear was downward on the pillow, whilst my deaf ear was uppermost, allowing the surgeon access to the mastoid area behind it. There was no pain whatsoever during the procedure.
The surgery lasted little more than an hour and then, with my head bound in a large turban-like crepe bandage, I was wheeled into the recovery area. After about an hour of lying on the trolley, just relaxing (probably coming down from the high I felt I was on), talking to my sister (who had taken me up to the hospital and was to be my carer for as long as I needed one) and a further hour spent waiting for the Pharmacist to come back from his lunch break so I could get my prescribed meds, Katrina took me home and deposited me on my sofa. When it was clear I was adamant I wanted to be alone (and moreover was safe to be left alone), she made sure I had sufficient drinks and light snacks to hand, and issued strict instructions that I was not to move for the next 24 hours unless to the bathroom.
Katrina had also arranged to be the voice relay between me and my family: as I was unable to hear on the phone until the bandage that covered both my ears was removed from around my head, she would relay messages between me and my parents (who didn’t have mobile phones) who naturally wanted reassurance that I was fine as they had not seen me. So I stayed put, lying on the sofa, watching television, texting my sister occasionally in reply to messages from her, and dozing on and off for the next 24 hours.
The big bandage was a pressure bandage that the surgeon had wound tightly around my head in an effort to reduce possible swelling around the wound. It was bound so tightly it pinched my ears and to be honest, that was probably more painful than the surgical site! I was instructed to remove the bandage after 24 hours and what a relief it was for my ears when I cut it off the next day.
I had been told not to wash my hair for the next two weeks, nor was I to touch or clean the site – indeed, it wasn’t to get wet… a challenge, admittedly, but of course I showered with a shower cap and, with the help of friends and family (dear Katrina again!), we sorted out a presentable clean-ish hairstyle (carefully washing and wiping my remaining hair with a flannel on an almost daily basis). Life wasn’t going to be put on pause just because I had had this surgery and for a fortnight or so, all was good. I had been signed off sick for the two weeks, because put simply, this procedure was deemed a head trauma, despite it being almost pain-free and relatively minor. Dear Katrina was there for me, all the time. If I wanted to go out and about, Katrina made sure I was as presentable as possible. She took me to see my parents and my younger sister and her family, she fetched and carried for me, she made sure all was good in the world of this now Borg-type person – she was an absolute godsend during this time when I wasn’t at my best.
Then, 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 of course one of the reasons I had had the Baha surgery in the first place was because I was prone to ear infections and suffered almost regular and constant infections and perforations. So, 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. He showed an interest in my recent surgery and the Baha hearing system in general, and asked to be kept informed. However, he also warned me that if my infection/perforation didn’t heal as expected, due to his ignorance regarding the procedure and technology implanted, he would have to defer to the knowledge and expertise of the specialists at the hospital where I had had the surgery, due to the infection’s proximity to the operative site.
Unfortunately, the ear infection didn't respond to treatment as it had previously, and I became very ill. I suffered from prolonged infection and constantly perforating eardrums for the next four or five weeks during which time I was referred back to the hospital so many times (each time driven there by Katrina – indeed one week, we were up there almost on a daily basis) to see the emergency on-call ENT consultant and general surgical consultants. I was in extreme pain, and had problems with my eyes too: I couldn’t focus very well for the pain and vertigo and I regularly needed physical support from my family and friends. It wasn’t long before the operative site itself also got infected; I had two abscesses which burst, leaving large indentations around the Baha abutment. Finally, after about five weeks, the infections cleared up and my ear, the abscesses and the surgical wound all finally healed.
All this resulted in my being somewhat unsteady on my feet for some weeks, unable at times to walk unaided up and down stairs; even walking in a straight line and turning quickly were a challenge at times. What was to have been possibly only a few days off work (more likely though, a week) had turned into a seven-week long absence from my job and here was I, a woman only in her early 40s, from time to time needing a walking stick (for the tripod effect of the stick and my two legs to enable me to balance when I became unsteady) to go out and about independently on my ‘bad’ days.
In January 2004, I had yet another appointment with the ENT and Baha specialists, this time to make sure that all was well with my ear (post perforations) and the operative site (post infection), and I was so pleased to learn that everything had finally healed.
On 11 March 2004, after a wait of almost 20 weeks post-surgery (a longer period than would normally be the case, in order to ensure osseointegration had taken place following the horrible infections and period of illness I had suffered), I was finally issued with my Baha ‘Compact’ 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! Immediately after I was issued it, I rejoined other Baha users in the hospital room that was our meeting room, 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!
It took a while to adjust to being able to hear again. In my mind, I was no longer deaf, but I knew I wasn’t a hearing person either: I still fitted in neither world properly. However, I was adamant I was going to adapt to the limitations placed on me, to ‘work within my new box’, so to speak, and to make the technology available to me work to my advantage. I was determined to learn to hear again as best I could.
Before long, though, I noticed a problem with the sound processor: intermittently it would seem to cut out then come back on then cut out again – rapidly, as if someone was flicking a switch on-off-on, etc. If you can imagine how strobe lighting affects one’s eyes that’s how it felt, but in my ears, and, in doing this, it caused me to be unbalanced so I was very unsteady on my feet – not all the time, just sometimes… and mostly when I least expected it, like, when I was on stairs, or walking unaided with friends, or… well, it happened at any time and so I would stumble, or even occasionally fall over. I went back to see the ENT/Baha specialist on 13 May 2004 and it was recommended then that I have a longer abutment fitted. This strobe-like effect was possibly 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 finally got the longer abutment in March of 2006 (such was the funding within the Trust that served the hospital where I was treated) and fortunately since then all has been well with my Baha.
At the time, unlike some other UK Health Authorities, the one that serves the hospital where I am treated didn’t supply (at all, never mind free of charge) any of the various accessories that could be used with the Baha sound processor and we patients are forced to dig deep if we wish to purchase these items – they’re far from cheap! Having trialled a Directional Microphone courtesy of the Baha support group I belonged to, I purchased one to plug into my Compact sound processor and I found this tiny piece of technology to be excellent in helping to discern where sound is (or isn’t!) coming from.
Previously, when I had been able to hear properly, I had always enjoyed chatting to friends on the internet (via Skype, MSN, etc.) but sadly, when one’s ears don’t work, headphones don’t work either. So, I purchased the Audio Adapter Cable for the Baha and, by plugging one end of the cable into the headphones jack of my computer’s sound card and the other end into my sound processor (both via the circuit breaker that is supplied with the Audio Adapter Cable), I was now able to use my computer as a telephone and speak to anyone on the internet… it’s a much better system for Baha users than a telephone!
The Telecoil Adapter is another Baha accessory that is available and I was fortunate enough to have been sponsored by the Open University (OU), who purchased this piece of technology for me to enable me to benefit from the OU lectures relevant to my course. The OU also bought a Conversor Microphone for me and so the tutor wears the mic and the sound transmitted from the mic is then picked up by the Telecoil Adapter, which is plugged directly into the Baha sound processor. (Tutors: make sure you remove the mic before going to the toilet!)
In August 2007, my Compact sound processor failed – it had been dropped and though it seemed to work immediately after the accident, it failed within a few hours. Fortunately, I had had it over 3 years and so was able to get a replacement free of charge from my Audiology department of my Baha hospital. On speaking with the audiologist, I was offered a Divino, the upgraded version of Cochlear’s Compact. I accepted and, after a return visit for some fine tuning to the new sound processor, I could hear even better than I had been able to with the Compact. Life as a Borg was great… and technology was improving so that we Baha users could benefit even further.
In July 2011, I was called forward for my next upgrade. There were two main Baha manufacturers by this time – Cochlear, whom we all knew about as they had been in the market since the start of the Baha days, and Oticon Medical, a new competitor, a hearing aid manufacturer, but who had ventured into the Baha-market with their Ponto system. I learned that Ponto was the system favoured by many Baha users, as the sound and clarity was apparently better than that afforded by the more up-to-date Cochlear sound processors – the BP100 (the upgrade from the Cochlear Divino), and the BP110 (the upgrade from the more powerful Cochlear Intenso). I found out that my hospital had contracted with Cochlear. I wouldn’t be able to have the Ponto through my Hospital Health Trust. So, when the upgrade came, it was a Cochlear BP100. I was saddened that my hospital was issuing sound processors according to what the Trust could afford due to the contract it had signed, rather than what the Baha user’s hearing required them to have… but such was life; there were no choices, unless one had the money to turn to private health care – and I didn’t.
The audiologist and I had several appointments to fine-tune the sound processor to my needs, and eventually we got it to an acceptable standard; though I still had the occasion beep and squeal, they were far fewer than when I was first issued the BP100. At some time after the two-year point, the buttons controlling programme change and volume control sheared off the sound processor, so much so that I had to send it off for repairs. Cochlear fixed it, replacing the section with new working buttons, but they also wiped all the settings from the sound processor, returning a blank piece of equipment to the hospital, causing me to have to attend three or more appointments for fine-tuning purposes… such an annoyance. Moreover, due to the change in software on the audiologist’s computer at the time, the settings retained on file weren’t sufficient to restore the hearing levels I had been happy enough with before the buttons sheared off the sound processor. We tried – the audiologist and I – we tried to get back to the level of satisfaction of me using the sound processor, but we never got there… for the rest of the time I used the BP100, I had feedback squeals and beeps and was disheartened by the standard of hearing afforded me by this bit of equipment.
(Whilst I was using the BP100 (which, when considered together with its fixture and abutment is called the Baha 3), the Baha 4 Attract – a magnet-based sound processor, which can also be sited on an abutment – was released by Cochlear. Because my upgrade had been so recent (I was on a 3 or 4-yearly upgrade plan), I didn’t get offered the Baha 4, but there are people around who have these sound processors, so if you want information about using these, ask around.)
In December 2015, I received a letter inviting me to an appointment at the audiology department in January 2016. I attended, of course, and had the usual hearing test, then got to chatting with the audiologist about the results of said test (I have lost more hearing and she recommends I get an appointment with the ENT specialist again to determine what, if anything, is causing this.) Then the audiologist revealed my upgrade had arrived and she told me it was a Baha 5 – the most up-to-date of the Cochlear sound processors. Ohhhhh, I was so over the moon! She programmed the Baha 5 as best she could for my immediate needs. It’s great. Yes, we still have lots of fine-tuning to do… I can’t hear like I used to because, as mentioned previously, I have suffered another loss of hearing, but the sound processor is fine and well for now. Then we talked about the accessories that were available. The Baha 5 sound processor has the ability to connect wirelessly, via Bluetooth, to each of these accessories. The audiologist said she would issue me with one of the accessories but if I wanted or needed more than that, I would have to buy them privately from the manufacturer or other supplier. I was so excited to learn more about what was what!
As soon as I got home from my hospital appointment, I asked the Baha users on Facebook their opinion as to which accessory they felt was good for their circumstances and why. Lots of advice and information appeared from other Baha 5 users, and I learned by reading the messages, and the pamphlets issued with the Baha 5 that the sound processor is termed ‘MFi’ – meaning ‘Made For iPhone’. Via Bluetooth, it can be paired wirelessly with iPhones, and other Apple equipment, and you can change the volume or programme of the Baha 5 wirelessly using that piece of Apple equipment. It’s amazing. I can use my iPhone 6+ to make/receive calls without problem, too! The sound doesn’t come out of the phone at all and I don’t need to put the phone to my ear. (There’s no point doing that if the ear is dead/deaf, eh??) I just accept the call by swiping my phone as normal and then, so long as the Bluetooth on my phone is on and the phone is paired with the sound processor, the sound is fed directly into my head via the sound processor!
As for the accessory I would like, there are four to choose from: steamer, remote control, phone clip and mini-mic. They all allow the user to use the Baha 5 sound processor in a different way, making an aspect of life easier for the Baha user. I’ve done lots of reading up about what each accessory can do and I’ve almost made my decision – I think I might opt for the mini-mic. Once I’ve definitely decided, I need to email the audiologist with my choice of accessory, so that she can make sure she has one for me and then she will make sure it’s charged up ready for the fine-tuning appointment I have with her on 10 February. I can’t wait – I’m excited, really I am.
One’s ability to hear grows with each day one uses the Baha, as osseointegration usually continues to improve for about a year after the initial implant surgery. As for everyday use of the Baha, I am still getting used to hearing with it even now – years after I was first issued with this amazing bit of kit. Hearing with a Baha is a totally different way of hearing (noise sounds slightly mechanical and radio-like), but I get there, after each upgrade… I manage, I cope, and I do even better – I hear! Yes, there are sounds I still don't recognise and noises I had forgotten, and direction finding can be a real problem so I am extremely careful when I go out of the house. But with each upgrade comes the challenge of learning again and in time, the reward of hearing better!
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 my 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.
Cholesteatoma? No, thanks! Deafness? No, thanks! But given that I have no choice in the matter, and now that I’m further down the line than some, I’ve become more accepting of the adage that “what will be, will be”. So… Baha? Yes, please – it's the best thing since sliced bread… and yes, despite everything I went through with the op and the weeks immediately following, I would do it all again.
Ain’t life, technology and hearing wonderful? Here’s wishing happy hearing to everyone!
Down on the Garden Coast of Kent
Summary of sound processors used
March 2004 – Cochlear Compact
August 2007 – Cochlear Divino
July 2011 – Cochlear BP100
January 2016 – Cochlear Baha 5
The day of surgery
The day after surgery
About 3 weeks after surgery
June 2004 – you can’t see my Baha