Meniere's grounded me
Karin is 53 years old. She was debilitated with Meniere's Disease until her Cochlear implants both restored her hearing and helped stop the attacks. She lives with her husband Don in Orange and has two children; both children are studying with one living at home full-time and studying part-time, and the other home part-time and studying full-time. Karin is not in the paid workforce (yet!) but is reasonably busy with voluntary work, renovating an older style home and enjoying travel once more.
This is her story
I enjoyed normal hearing until the late 1990's, when I was first diagnosed with Meniere's disease. For quite a few years, despite frequent and severe attacks (usually requiring hospitalisation), other than in the days leading up to an attack the impact of Meniere's on my hearing was minimal. There was a period of "remission" and I thought I was one of the lucky sufferers who could continue to have a life despite my disease.
I had an active life-style with a job requiring travel as well as meetings, conferences, conducting training sessions and interminable phone discussions! On a personal basis, I was heavily involved with our children's activities at school, sport, music and so on and fitted in my own passion - playing hockey. I played First Grade level in local competition and had thoughts of trialling for the State Veterans side in my age division.
By 2002, the hearing loss in my left ear began to have a noticeable impact on me at work. I employed the usual coping strategies by placing myself in the best position at meetings or conferences, using only my right ear for phone discussions, re-aligning my desk position and making much greater use of email. My family, friends and colleagues became accustomed to only walking and talking on my right side; on the hockey field I became a specialist left side player so I could hear calls and whistles with my right "good" ear. My hearing loss and disease was still very manageable, though the frequency and severity of attacks became distressingly regular.
I faced many challenges just to cope with life
The challenges of dealing with a disease which eroded both my hearing and balance were varied. Normal daily activities became fraught with difficulty and frustration reigned supreme. On one occasion, I left a hot water tap running and because I didn't hear it, by the time we needed hot water the inevitable had occurred - we had lost it all. Trying to manage a house with stairs while suffering random dizzy spells became dangerous. The spells were almost drop attacks, came without warning and turned everything upside down with earth-shattering suddenness and severity. I decided to stop driving when I started experiencing these types of attacks. My daily walks became a logistical nightmare - I could take the mobile for when/if I had a dizzy spell but would I hear enough to actually use it? Paradoxically, after a severe attack, my hearing became much clearer for days or even a week before the inevitable build up of fluid began the hearing loss process again. By September 2003, Meniere's had reached such a level that I resigned from my job and underwent surgery to try to combat the seemingly never-ending attacks.
This was my first experience with the wonderful team at St Vincent's Hospital's Hearing and Balance Clinic and of course Dr Nigel Biggs. I felt the surgery was reasonably successful and in December I rejoined the workforce on a part-time basis but with noticeably reduced hearing in my left ear. Still, I was able to manage with a little strategic planning, but by March 2004 it was clear I had bilateral Meniere's disease. The deterioration in my "good ear" (right ear) was rapid and devastating, more so in terms of hearing loss than the dreaded attacks. It was then I embarked on a virtual merry-go-round, trialling numerous hearing aids and devices and becoming more and more frustrated with my inability to reach a satisfactory level of speech discrimination. I concluded that aids only worked on good days; when my Meniere's was rampant, the distortion of sound rendered them totally ineffective. I was also unfortunate enough to experience discrimination in the workplace and I lost my job; my employer would not embrace the necessary workplace changes that would have made it possible for me to continue working.
Our whole lifestyle changed. Our lovely big home became a burden to care for as my health deteriorated; we had planned to buy an older, smaller home to renovate at some stage in the future so we accelerated that plan. Our Real Estate agent was a most understanding young man who had no problems relying on emails and text messages when I wanted to arrange an inspection. We had always enjoyed camping, travel and other activities. These were now limited to places where we could easily access medical care in case of bad attacks and gradually we went less and less. The problem of social isolation was difficult to deal with. I couldn't just pick up a phone or go for a drive to the shops or cafes. If I needed to go somewhere, my husband had to either take time off work, or phone a taxi for me. I needed a family member to help me cope with doing simple tasks such as grocery shopping. For me these had become too stressful. I withdrew more and more and felt that life was just on hold - but for how long? It was time for action so despite what I felt was a lack of enthusiasm or support from some local health professionals, I insisted on a referral for assessment for a cochlear implant. That was when I once again came to the wonderful team at St Vincent's. They immediately gave me the feeling that firstly, something could be done, and secondly, they cared about how both my husband and I felt about the impact this disease was having on our lives, and the outcomes we were hoping to achieve.
During the attacks, bad health related to the disease, tests, trials and frequent trips to and from St Vincent's, my husband's support kept me going during the bad times. We had time for in-depth conversations in the car - when I could hear- and certainly some laughs about the situations I created when my lip-reading was more enthusiastic than accurate. There were some not so funny moments as well, but we tried not to dwell on them. A friend had heard about my job loss and promptly offered me a job in his lovely restaurant. Of course I declined, as I didn't want to turn it into "Fawlty Towers", to say nothing about the fact that my only restaurant experience was as a consumer.
On May 2nd 2006, I underwent surgery for my first implant. I was amazed at the speed of my recovery and lack of major side effects. It was only an overnight stay in hospital, but we stayed close with family for another night before driving back to Orange. The following day, with the pressure bandage still in place, we headed west. I simply had to have a coffee break at the McDonalds pit stop at Eastern Creek about an hour out of Sydney. I now wonder at the sight I presented. In retrospect, I probably should have asked my husband to go and get take-away, but I felt so good about how things had gone I simply had to sit outside and enjoy the day.
Switch on day was May 16th. The first big difference I noted was that the sounds I heard were not as "external" as with a hearing aid. With all the hearing aids I had trialled, there had always been a barrier, a consciousness that the sounds were external. At that time, I was still trialling yet another hearing aid for my "good" ear. Unbelievably, the aid broke down and within two days of switch on, I was left totally reliant on the Cochlear Implant. I think it was a bonus; there was no holding back!
One month after implant, I strapped on a rugby helmet and went back to hockey - admittedly in third grade, but I was there. (I won't dwell too much on the fact that keeping a diary for a few weeks after was made difficult by a broken finger.)
I recollect two momentous occasions in the early post-switch on days: the first was when my son said something. I had my back turned and he was walking away from me - I responded and we both suddenly realised the import of what had happened - I had heard! I think this was the moment when I knew "it was good!" The second occasion was when my husband walked into the study and saw me (with my phone adaptor) making my first successful phone call in years. I was talking to our daughter who was attending university in Canberra. Those sorts of moments brought tears to our eyes.
By the end of June 2006, I had been experiencing more negative impact from the hearing aid than not and I decided I would just focus on bringing the cochlear implant to the maximum possible level. That was my last experience with a conventional hearing aid. I had no concerns about going solo with the minimal hearing capability of my "good" ear; even at that early stage I knew that with the implant, I was far ahead of anything I had been able to achieve with a conventional aid.
One year post implant, the statistics were staggering. I was hearing well and scored something like 90% speech discrimination. But a statistic which can't be measured is the impact my implant has had on my family. We can converse at the dinner table or in social situations. I don't need one-on-one discussions; (admittedly I sometimes miss my cues if someone starts speaking and I can't see them.) I can socialise again and instead of relying on email to communicate with family and friends who don't live locally, I can just pick up the phone, plug in my adaptor and go back to having lovely long conversations - with the phone bills reflecting this change of course. (I still find the adaptor a better option for longer calls, and calls to businesses with "Press one if you want…." - in these cases, I put the receiver down and work on something until I speak with a real person.)
Everyone had become accustomed to speaking, standing and walking on my left side. Now they had to swap sides so I could hear them. I started playing hockey as a right side player after all those years of specialising as a left side player, and found I must be a latent left-hander as I don't like it as much (I also prefer back-hand in tennis).
I knew I could still achieve more with "fine tuning" at future mapping sessions and I was really getting there in terms of hearing, with life almost back to normal. I felt with two cochlear implants I could get even more and had a second implant not been feasible for me, I would have been happy with what I had achieved.
I can't pinpoint when the idea of pursuing this dream of a second implant started. When I mentioned my decision to friends a common response was "why would you?" My off-the-cuff response was "why would I not?" but to formalise the decision making process, the main reasons were:
- The rapid deterioration of my right ear in terms of hearing loss and a resumption of Meniere's attacks which was having a negative impact on the quality of life I had achieved after my first implant.
- There was, in terms of residual hearing, very little to lose.
- A very real desire to become even more "normal"- I had spent most of my life hearing with both ears, I wanted to get back to that.
- Total trust in the team involved in my first implant process.
- I understood that the shorter the period between hearing loss and implant meant a shorter period of hearing rehabilitation.
- The reassurance that if one processor malfunctioned, I could still function effectively with the other until remedial action could be taken.
My second implant was once again done at St Vincent's by Dr Biggs on August 21st, 2007. I bounced back quite well, though there was a more noticeable effect on my balance. I actually asked to stay in hospital for a second night before driving straight back to Orange the next day. Switch on was the most marvellous experience; I imagine that as my brain knew what to expect it was not as steep a learning curve. Hearing in stereo again was marvellous; I walked out of that session on air. I did experience a time where it seemed I had lost ground however we had been told that this could occur so were not dismayed. I started to pound the pavements again; walking is one of the best forms of rehabilitation as far as my balance issues are concerned. I also signed back on at gym to help with the recovery process, and to address the weight issues from my involuntarily sedentary lifestyle, plus side effects of medications. It's now some eight months post switch-on and I'm smiling.
The gains I have made since becoming a bi-lateral cochlear implant recipient are multitudinal; among the more notable are:
- Music, which had been my biggest hearing challenge, is now "making sense"; I can enjoy my son playing his guitar again and I like having background music at work.
- I can watch TV and movies without relying on sub-titles - much more fun if you hear the delivery of lines rather than just reading them while the music adds to the moment. I can hear the TV behind me when I'm in the kitchen so can keep up with news more easily. However, I do still use subtitles on most things just in case I miss something.
- I can cope in many situations where I had just stopped going such as parties, restaurants and shopping centres. I have to remind myself not to set expectations that would exceed those of a "normal" hearing person.
I find very little to differentiate between my hearing on my left and right sides and feel much more physically balanced. I immediately know if I accidentally put the left processor on the right side or vice versa, but should I be in a situation where a battery change is a challenge, I can cope very well with one processor until I can change batteries. When I did have a processor malfunction, I felt the loss more keenly in terms of balance and spatial awareness than in hearing -I think this demonstrates how effective the implant is as more than a hearing tool.
I have also swapped to the newer Mini BTE controllers; I find them less intrusive particularly as my right ear has less "space" behind it to fit the standard size controllers. They are great very comfortable and the battery usage is quite good. I do take my ears off at night; with my active lifestyle, the units need to be dried properly. If I were asked if there were any improvements I would like to see, it would be that of totally waterproofing the processors and controllers.
Tests have confirmed I have retained residual hearing - I can still hear my shower water running, the opening of flip-lids, loud banging noises such as cupboard doors closing, whistling and similar noises. I think this helps me with spatial awareness when I am not wearing my processors, though the level of hearing is well below any functional level for normal hearing interaction.
There has been the added bonus that the Meniere's attacks have ceased. I'm driving again and have just put in my first job application (for a paid position that is!). Last, but not least, I'm back playing second grade hockey which is about where I would have been at this stage in my life anyway.
Throughout all of this, I have had the most wonderful support from my husband and children, extended family, Dr Biggs, Ximena Alvarez-Mendes and the team at St Vincent's, some very good friends and my church community. It's not a journey I would like to have undertaken on my own.
When I was asked to speak at a recent conference at St Vincent's, I saw it as an opportunity to thank those involved in giving me a life again and to help in some way to raise awareness for the benefits of cochlear implants. Given my experience with negativity, I feel it is important for people to see a walking talking success story. Dr Biggs was terrific; my presentation there was in the form of question and answer supported by some statistics and a dateline. My biggest surprise was being able to hear and respond to questions from the 70-odd audiologists anywhere in the conference room - I think that was most telling in terms displaying how successful my hearing recovery has been. Following my successful presentation at St Vincent's I was delighted to be asked to join the Cochlear Awareness Network (CAN). The message I would like to send is clear - never give up. I could have accepted the opinions of those who felt I could go no further than conventional hearing aids, but I didn't. I look forward to being able to share my experience with anyone who is contemplating a CI, and to possibly help raise general awareness of the availability of such a wonderful Australian invention.