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STORY OF THE MONTH


Michael’s Story (Part 2)

 

Last month’s story of the month featured the story of Michael Tighe from Dublin, and told us how losing most of his hearing in his 30’s affected his life over the years. In the second part of his story, we learn about Michael’s journey towards his decision to get a cochlear implant in 2010 aged 50. Michael’s journey was not a simple one and it clearly illustrates how every person’s circumstances are different. For some the decision to get a cochlear implant will be more complex than others, but everyone must make their own decision in their own time.

 

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DeafHear.ie Michael Tighe

Michael Tighe

 

School…College…Work.

I was aware I was losing some of my hearing in my teenage years. While school was not too bad, I was very aware of the issue. When I went to college, I could not follow lectures very well. Some professors and lecturers were impossible to hear (particularly if trying to write notes).

A friend often gave me his notes afterwards, which I summarised and gave him a copy. This way we both benefitted! Those were in the days when there were no note takers or supports for students with hearing loss or other disabilities. In hindsight I am very pleased with how I handled the lectures.

The main problems in college were mostly social. I still remember not being able to cope in UCD’s canteen and the student bar. So from that stage and all my adult life I handled most social scenes on a wing and a prayer. I have no idea how different or otherwise things would have worked out. I was intelligent, but yet did not seek much by way of practical help. I suppose that was denial!

During my teenage years, I also developed slight balance and co–ordination problems and lost my sense of smell completely. I ignored all these issues also.

Transferring from College to work caused a huge shock to my system. I could not cope. I realised I was in trouble. I immediately gave in and got a hearing aid just shy of my 22nd birthday. I will always remember my 1st day with the aid. Unlike many, I never once considered rejecting it.

For nearly 10 years I lived a normal life, changing jobs, getting married and starting our family. My poor hearing was a burden lightly borne. During this period my balance worsened considerably. Always stumbling I had to give up tennis and squash in my mid twenties. I loved tennis but the combination of balance and co–ordination needed were beyond me.

In my early thirties, my hearing worsened a lot and shortly afterwards I had a few epileptic seizures. I began a “tour” of consultants including a leading ENT surgeon in Manchester. It was here that I first heard of a cochlear implant and locked it away in my head as a possible long–term option. In 1993 I was told I would be completely deaf in 5 years. I have long since come to treating Consultants views with a degree of skeptism!


CNS Siderosis

I was diagnosed with epilepsy...and ‘Superficial Siderosis of the Central Nervous System’ – it is called SS for short! Basically all my problems were due to a large leakage of blood into my spinal system due to a serious accident when I was young or possibly at birth.

 

“I could write a
long note of SS
that would be
essential reading
for up and coming
neurologists!

 

The blood led to iron deposits everywhere, interfering with neural pathways and damaging my cerebellum, brainstem and 8th cranial nerve amongst other things.

We know the 8th cranial nerve as the auditory nerve, which carries both hearing and balance signals from the cochlea to the brain. The cerebellum is the part of the brain that regulates all body movements.

The good news was that we knew why I had so many health issues and also knew I was on the milder end of what damage SS could do. The bad news was that nothing could be done, no experts to seek help from and the future development of the disease was uncertain. I could write a long note of SS that would be essential reading for up and coming neurologists!

In my 30s and 40s my hearing continued to worsen, more in terms of quality than volume. I gave up full time work in 2005. I have always been a confident person; some would say “too cocky”. While I have not lost the confidence it is no longer in the front window. And I had a big decision to make.

 

Considering a Cochlear Implant

DeafHear.ie Michael and Marie Tighe

Michael and Marie Tighe

Going for a cochlear implant was not about snappy decision making for me. It was a slow, time consuming and somewhat frustrating experience. I am happy I made the right one in the end. I am usually decisive (if often wrong). Everybody’s decision is their own and based on their situation. So my experience, what went on in my head, is unique to me. It may be of interest to others, but that is all!

By the start of the new millenium, my hearing loss was very severe and I was within range of a possible implant. Although I had an MRI to check the cochlea was physically ok, I did not consider having an implant at that stage. In fact, the world of neurology was saying no! My hearing loss was ‘retrocochlear’. If the damage was central (on the nerve and brain) how could a cochlear implant, which depends on an active nerve, work? I bought the argument. Was I too conservative? What if?

What is a
Cochlear Implant?

A cochlear implant is a surgically implanted electronic device.

It has a number of parts: an externally worn speech processor, and an internal electrode array which sends electrical impulses directly to the auditory nerve.

These impulses can be interpreted by the brain to make sense of sounds and speech.

 

By about 2006, there was a greater understanding worldwide of SS and some implants on people with SS were reported with varying results. So now a cochlear implant operation could not be ruled out. I also came in contact with a few other patients with SS and a research neurologist in Johns Hopkins Hospital in the US who was specialising in SS and running a trial of a blood chelating drug called Ferriprox or Deferiprone. (The idea is to remove the iron and hopefully reverse the symptoms). One thing that I was very aware of was despite the fact that I had loads of doctors involved, nobody had the full picture except me! I have always been a trial and error type, rather than diligent. Could I trust myself?

I still was of the opinion that a cochlear implant was not for me and proceeded to test a few alternative top of the range hearing aids and ALDs (Alternative Listening Devices). 12 months later, I was happy I was getting the maximum from hearing aid technology.


Things get worse!

My hearing continued to worsen, my life was really messed up: I was coping but was I really living? Knowing that there were some successful outcomes for SS patients who got a cochlear implant, I decided to review things again.

My neurologist did not know why the cochlear impant sometimes worked on patients with SS, but he withdrew his absolute belief that it would not. The thinking in John Hopkins neurological research centre was that the electrical stimulus of the auditory nerve was increasing the nerve’s sensitivity, and so fitting a cochlear implant ahead of complete deafness was advised in certain circumstances to increase the chances of success. I fitted into this category. I was told by my own neurologist to make my decision on hearing grounds alone. Ball in my court!

My right ear has been dead for 30 years and a promontory stimulation test suggested a cochlear implant on that side had no chance. That upset me a little but not too much. It would have to be on my left ear with all the risk that entailed. I would lose my residual natural hearing and failure of the cochlear implant would mean total deafness. I continued to sit on the fence.

Meanwhile, I met a few fellow SS sufferers including one successful implantee in London, talked with my wife, friends and family, and gradually warmed towards the idea of getting a cochlear implant.


Decision Time!

The decision was simple in the end. The chances of success, the appeal of a fuller and more participative life, the frustration of not being able to do something about my hearing up to recently, and now having a chance...all far outweighed the possible loss of all my remaining hearing. Risk assessment is important but not everything.

Being patient and considering all options are important, but it was now time to decide. No more sitting on the fence! I threw out the conservative within me and decided to go for it.

The Implant surgeon asked me to spend a few months doing a final review. All doubts were gone and this stood to me in the crucial days leading up to the operation.

I had my cochlear implant operation on September, 15th, 2010 and “Switch On” on September 29th, 2010. Few things in my life have grabbed my attention or concentration as much. I had at least a month’s obsession around the Operation and “Switch On”.

Confidence is the key. Be positive. A full life is possible. Don’t use your hearing problem as an excuse. You will always have the problem, it will not go away and it will overwhelm you at times. You can however limit the damage the problem does to your life, not always but most of the time.

Leaving all emotions aside there are numerous practical situations where common sense and a little planning can help. A hearing loss is a challenge, you must remain positive about what you can do and not dwell on things that are difficult. View glasses as half full rather than half empty.

 

In next month’s Story of the Month we will learn how Michael’s life changed when he got his implant, the challenges he faced, and the successes he achieved.

 

Michael’s Story (Part 1)

Part 1 of Michael’s story focusses on the earlier part of his adult life and how he coped with his deteriorating hearing loss. Most of the content was written by Michael in 2004 and was published in ‘1 in 7’, the Royal National Institute for the Deaf magazine. Read On…

DeafHear.ie Michael?s Story (Part 1)

Michael’s Story (Part 2)

Part 2 of Michael’s story we learn about Michael’s journey towards his decision to get a cochlear implant in 2010 aged 50. For some the decision to get a cochlear implant will be more complex than others, but everyone must make their own decision in their own time. Read On…

DeafHear.ie Michael?s Story (Part 2)

Michael’s Story (Part 3)

Michael had a cochlear implant operation on September 15th 2010 and ‘Switch on’ on September 29th, 2010. Now in the final part of his story, we learn about how life has changed since he received his cochlear implant almost five years ago. Read On…

DeafHear.ie Michael?s Story (Part 2)


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If you or a loved one is affected by hearing loss, support is at hand. Contact any of our Resource Centres (click here) or email us using the form below.

 

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Check out some of our previous Story of the Month!

STORY OF THE MONTH:
January 2015

This Story of the Month focusses on access to health services for Deaf and Hard of Hearing people. Evidence has shown that people with hearing loss have difficulty communicating with health professionals, and are more likely to experience delayed diagnosis and medication errors. Read On…

DeafHear.ie Andrew McCafferty, Deaf Patient, March 2014 in Sick of It 2015
   

More Stories of the Month
can be viewed here...

 

 

    


 

more...Hearing loss costs an estimated €2.2bn every year in Ireland.

 

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