CROSSSD Study – You Can Help with Vital Research!

logo-CROSSSD (2)

I recently came across an interesting research project, whilst browsing on Twitter. The purpose of the study was to help develop the research of treatments of single-sided deafness (SSD), making it easier and quicker to find out which treatments work best and why.

As someone with SSD, who has been unsuccessful in finding an aid to help overcome the difficulties imposed by this type of hearing loss – namely challenges in localising sounds and understanding speech in noise – I was keen to do whatever I could to help support this research project.

The study is part of a PhD being undertaken by the audiologist and researcher, Roulla Katiri, and is supported by the National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Centre (BRC). I wasn’t sure whether I would be able to participate since I am currently living in Spain and the project is based in the UK. So, I sent a message to Roulla to see if there was anything I could do to help. Roulla’s reply was simple and clear – since I have been diagnosed with SSD over 12 months ago and have trialled a hearing aid, I was a perfect candidate to take part in the consensus.

Here’s a little bit more about the study…

The purpose of the study is to develop a common set of ‘outcomes’ to help researchers decide whether a treatment works. In the field of treating SSD, ‘outcomes’ are the things that should be measured when deciding if a hearing aid or an auditory implant is effective.

Examples of ‘outcomes’ are:

  • The ability to localise sounds
  • The impact of SSD on quality of life
  • The ability to hear in noisy places such as restaurants

Different research studies often measure different outcomes, meaning it can be difficult to compare or combine measurements. This makes it hard to identify which treatment works best. If all future studies measure the same common set of ‘outcomes’, research can be moved forward faster.

This is all explained really nicely in this short video (2:19 running time):

The information gathered from this study will help others with SSD; and audiologists, like Roulla, to be able to recommend the best treatment for SSD, when considering the individual requirements of their patients.

My experience completing the study…

As a participant, I was provided with very clear information about the purpose of the study, how to complete it, and how my information would be used.

The survey is comprised of tables of outcome statements like the one shown below:

Snapshot 1

All I had to do was score the outcomes as to how important I felt they were to measure, for SSD treatments according to my own experience. To do this I was required to select a score on a 1 – 9 importance scale, by simply clicking on the relevant part of the table.

Before completing the study I was a little concerned. This is a cause I am very passionate about, and I was worried about making the wrong selections. However, I soon realised that there couldn’t be an incorrect answer – my opinions were all that mattered. I was also slightly worried I might change my mind about some of my scores, after submitting the survey. But, should this be the case, there was going be a second round of the study, where I would have the opportunity to view a summary of the other participants’ scores for each outcome. If I wished to change any of my scores, after reconsidering my initial decision, I would be able to do so in Round Two. I really couldn’t go wrong!

The phrasing of the outcomes was easy to understand and the survey took approximately half an hour to an hour to complete. If I felt particularly strongly about any of the outcomes, I also had the opportunity to add a comment. If I had needed to take a break, there was the option to save my progress and to continue when I had time.

Who can take part?

You can help if you are:

  • A member of the public with severe-profound SSD for over 12 months
  • A healthcare professional with experience of SSD, such as: 
    • Audiologists
    • ENT doctors
    • Funders, relevant charities workers e.g. Ménière’s Society, researchers around the world who work in the field of SSD

If you don’t satisfy any of the above criteria, you can still help by increasing awareness of the CROSSSD study. You can share this blog post, or the relevant information, on your social media platforms. Or, you can simply mention the study to friends or family members who have SSD, or who know someone who does.

It is an international study. The more diverse the applicants, the better the overall representation of people will be – from all walks of life, all ages, and from around the world. If the survey is completed by people from a wide variety of different backgrounds, this will give researchers a better understanding of the key outcomes that will help provide effective treatment for the greatest amount of people.

A final note…

It’s so great that this research is being conducted and I am really happy to be able to help contribute to this study and to give my opinion on what really matters regarding treatment for SSD.

The unique challenges that come with living with SSD are not limited to hearing difficulties. People with SSD may also be living with other related issues such as tinnitus, sound sensitivity and fatigue. Those affected may experience psychological and social issues due to difficulty following conversation, which can make communication at social events exhausting, causing stress, anxiety, and reduced self-esteem. Hearing difficulties and mental health issues can also put stress on professional and personal relationships. And, possibly the most difficult issue is that SSD is invisible; people with SSD may feel alone and isolated in their daily struggles.

Please, take a moment to share this post or the information below. And, if you satisfy the criteria to participate, please take the small amount of time to complete the study. It’s quick. It’s simple. Your help could vastly improve the lives of people with single-sided-deafness.

For more information, visit the following website: www.nottingham.ac.uk/go/CROSSSD

Or contact Roulla to register your interest: roulla.katiri@nottingham.ac.uk

The study will close beginning of November 2019.

Hearing Me – with a Twist!

hearing me

I am so happy to share an updated recording of the BBC World Service Documentary which I was involved in earlier this year.

This version combines the original audio with a twist at the end 😉

Please note, a transcript is also available through the same link – just scroll down the page to download:

BBC World Service – The Documentary, Hearing me

What does life sound like for someone whose hearing has suddenly changed? (This programme contains audio effects that may cause discomfort to people living with hearing conditions. There is a modified version of this programme, with quieter effects, on this page https://bbc.in/2TrInga) What does life sound like for someone whose hearing has suddenly changed?

 

Please take the time to have a little listen and share. 

I hope you enjoy it!

 

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Hearing Me – A Documentary for the BBC World Service – Now Available to Listen to!

BBC World Service

It’s been two and a half years since I suddenly lost the hearing in my left ear, and today I am celebrating all I’ve achieved since my hearing loss.  Thanks to the BBC World Service, I am very happy to share this glimpse into my life without full sound.

Hearing Me is now live to listen to! Please note, a transcript is also available through the same link – just scroll down the page to download:

https://www.bbc.co.uk/programmes/w3csynqv

Another big thank you to Chelsea Dickenson (Audio Always) who spent 4 days following me around Madrid with a microphone, and who showed me just how much energy and attention goes into making a radio documentary.

Please take a few minutes to listen and share. Thank you 🙂

 

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Hearing Me – A Documentary for the BBC World Service

BBC World Service

Something exciting happened last month!

I was involved in making a radio documentary for the BBC World Service, which describes some of my experiences of living with hearing loss and tinnitus, and also reminds us not to take our hearing for granted.

I feel so lucky to have had the opportunity to take part in this, and to be able to share my story.

Hearing Me, is now up on the BBC World Service’s schedule: https://www.bbc.co.uk/programmes/w3csynqv

The documentary will be played several times so that people in different time zones can listen to it. You can find these by clicking ‘more’ below the programme information.

Afterwards, it will be available online through the same link as above, and it will also be part of their ‘The Documentary’ podcast series: https://www.bbc.co.uk/programmes/p02nq0lx/episodes/downloads

Please note there will a transcript to enable listeners to follow the dialogue.

A huge thank you to Chelsea Dickenson and Audio Always for creating such a personal and creative piece, I absolutely love it, and hope my readers/listeners (!) all do too!

“I Know a Song That’ll Get on Your Nerves, Get on Your Nerves, Get on Your Nerves…”

Have you ever had a song stuck in your head? – An unwanted earworm that keeps playing over and over? A catchy piece of music that continually repeats through your mind, long after it has finished playing? This is similar to how I would describe my tinnitus. But instead of the notion of the song, there is actual ‘noise’, and the music never stops playing. There is no end to the record.

Tinnitus is defined as the perception of noise or ringing in the ears or head. The noise is not from an external source and can manifest itself in many forms. The varying sounds have been described as whistling, whirring, clicking, screeching, hissing, ringing, buzzing, pulsing, whooshing, or even musical. Tinnitus is a symptom of an underlying condition such as hearing loss, ear injury or circulation problems. From the moment I lost the hearing in my left ear, I simultaneously gained these unwanted sounds. My life became noisier.

My tinnitus feeds off salt and sugar, caffeine and alcohol, and feasts on a lack of sleep. Exposure to loud noise makes my tinnitus worse; giving it energy, enabling it to accelerate or become louder, and more prominent. Sometimes it is so loud that it is difficult to hear or concentrate on ‘real’ sounds. Sometimes it steals my attention from conversation. My tinnitus seems to be related to the pressure I feel in my ears and head. Louder or faster tinnitus means more pressure, sometimes culminating in a pain that feels like the inside of my ear is being stretched to full capacity; to the point of something bursting.

For some people, their tinnitus comes and goes, and for others, it is constant, chronic and persistent. Mine is ever-present. It will often fade into the background of my days; everyday noises will usually mask it, forcing it away from my attention. Yet, there is the cruelty of finding a peaceful moment, or going for a walk in the countryside, and realizing the tinnitus has no ‘real’ background noise to overcome. It bounds into the foreground, onto the stage for full attention.

At night-time, there are no ‘real’ sounds to mask it. At night-time, it loves the limelight; gobbling it up with glee. The more I focus on it, the more layers of noise I discover. The foundation layer is the sensation of being underwater. I am under the sea, swimming deeper and deeper; water whooshing past my ears. With more focus, electronic-sounding agonized moans begin to emerge. A violin enters the stage; playing a continuous high-pitched and out of tune note that wavers painfully up and down in tone. The sound of an old metal kettle materializes, boiling with the shrill continuous whistle; demanding to be taken off the heat. Occasionally there is a piercing spark of noise; like the sound you’d expect your finger to make if you were turning something magically to ice. Sometimes the moans sound like melancholy singing. A penetrating fog horn begins to sound. A burst of crackling radio static joins the chorus, as the knob of an analogue radio is turned; seeking out a resonating frequency and occasionally skipping past the notion of a word or a piece of music.  I make pictures with my mind. I form images around the sounds. The more I focus, the more elaborate the scenes become. Wailing prisoners bound and shackled, all in a row, somewhere in the distance. Someone is trying to scream, but is not able to make the desired sound, just a sharp continuous squeal. There is someone drying their hair in another room…

… When I stop feeding it my attention, it’s back to swimming underwater.

My tinnitus is like being in an argument I don’t want to be part of. I am engaged in a duel I didn’t sign up for. At times it can be a torture. I am always fighting. I stay busy. I take my mind off it. I surround myself with everyday sounds.

I find myself observing people on the street, on the Metro, in bars, restaurants and parks. I wonder whether they too have these unwanted noises. Are they too trying to ignore the record that won’t stop playing?

I choose to ignore my tinnitus with as little effort as possible. Since the more effort used, the more attention it receives, and then it starts to win the battle. It’s a paradox I must fight. I wish for the noises to stop. I dream of relishing a quiet moment, but I can’t remember silence.

 

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Working With My One Ear

I used to almost consider my hearing as a super strength; it was a sense I relied heavily on as a teacher of young children. In fact, a couple of years ago I underwent a hearing test, as part of a staff medical assessment, and the audiologist commented on how remarkable it was that I was able to hear even the quietest of tones above the background noise of the children in the corridor. As a teacher, I was able to identify the owner of any voice in the classroom, without having to turn and see their face. I was able to pinpoint the precise location of where a voice was coming from, and could swiftly turn around to face the person who had made the tiniest of noises or uttered a sound in the quietest of voices; with an ease of motion gained from years of experience teaching infants. Only after my hearing loss did I realize how much confidence I placed in this ability. My superpower was now gone, and I was learning to survive in a classroom, and a school setting, without it.

I had resigned from my job as a teacher of 4 and 5-year-olds. Working full time in a classroom wasn’t an option for me anymore, due to the amount of noise exposure I would have. My new job was working as a learning assistant. My new job involved some time supporting a teacher in the classroom; some time covering teachers when they would be in meetings or planning lessons; and some time working with individuals and small groups, in a quiet environment, outside of the main classroom.

With only one hearing ear, I am unable to locate sounds. If a child speaks to me in a classroom, and they are not standing in an obvious position, I will have no idea where the child is situated, and will spend some moments looking around trying to determine their position. Similarly, if I am sitting in front of a class, and a child shouts something out, I cannot rely on my listening skills to identify the culprit, and will instead search for a guilty-looking face. With time I have discovered that, when a child makes an inappropriate noise, if I say, “Who was that?” in a stern voice, without moving to look, the other children will immediately turn or point to the perpetrator!

There is the difficulty of being unable to focus on spoken word over background noise. If a child tries to speak to me in the classroom when the rest of the children are busy carrying out activities, I have to make sure they are on my hearing side, and very close to my ear, in order to be able to hear what they are saying. There have been times where I am concentrating on something a child is saying to me, on my hearing side, when all of a sudden I have felt a vibration or a whisper of a breath in my deaf ear, and I’ve turned around, only to be startled by a child speaking intently into this ear!

Working in an Infant school is a demanding role for someone with a sensitivity to noise. The children are young, and so naturally are often noisy. As well as the obvious loudness of children’s voices in the classrooms and the corridors, there are also some difficult situations I can’t always predict or plan for. There is the painfully-loud noise of a fire alarm drill; the loudness of music played in assemblies and music lessons; the intense volume of other staff member’s voices in staff meeting debates that often overlap with each other, becoming unintelligible to me.

There is my lunchroom nemesis. The school dining hall is a space with an absence of soft furnishings. There are neither carpets nor curtains to absorb the abundance of sound produced in this room. Inside this space are long tables, and glass windows that frame the full length of one side of the room. The opposite side of the room opens onto to a small utility area, featuring a large-scale kitchen sink. This area is used for rinsing the children’s lunch trays with a high-powered rinsing tap. During lunchtimes this room is an abundance of energy. The long tables brim with children. The room fills with chattering voices, the clinking of cutlery, the banging of plastic trays against bins to rid them of any leftover food, and the sound of jets of water spraying into a metallic sink. The sounds seem to bounce around the room from the glass windows, to the hard floor, and to the metallic kitchen area; rarely being absorbed, and mixing with the new sounds being made every moment. I have been using my time spent in this room as part of my sound retraining therapy; getting used to everyday sounds I find challenging, and to help my brain tolerate noises that at present seem too harsh or too loud. As well as battling with the discomfort of the noise in this room, I also have the issue of socializing. Lunchtime is often the only time members of staff have, in the school day, to have a quick chat. In this room, if someone sits next to me on my hearing side, I can usually conduct a conversation with a little effort; making sure my ear is close to the person speaking. However, if someone comes to sit next to me on my deaf side, I won’t hear them approach. This means I continuously check this space to see if anyone has sat down. If there is already someone sitting there, I find myself constantly observing their face to determine whether or not they are talking to me. I often find myself eating my lunch quickly to avoid the noise exposure and communication difficulties. I know this isn’t helpful in moving forward in dealing with my nemesis, but sometimes, when lunchtime arrives, I’m so tired and it’s hard to concentrate. The other scenario is that I make a big effort to start and hold a conversation with the person sitting on my deaf side. This means I have to turn my body around to face them, to have any chance of hearing their dialogue. This makes eating my lunch a difficult task, and hence means more time spent in this room; my nemesis.

Then there was The Cough. I was in a classroom, covering for a teacher, and every few seconds one of the girls would burst into a deep chesty cough. I encouraged her to drink water whenever she felt the need to, but this didn’t seem to provide her with any relief. Over the course of the hour during which I was in the class, I spent my time duelling with The Cough. Every time I spoke, there was a cough interruption. In the presence of The Cough, it was as though any audio in the room at that moment was being censored. Just like when watching something on television when there is a bleep censor used as the replacement of a profanity, or for when classified information is used; this was the consequence of The Cough. So, whilst sitting in front of the class, trying to teach, every few moments, I was for a few seconds unable to hear anything other than The Cough. I was also unable to gauge whether the volume of my voice was at an audible level. Similarly, I was unsure of how much to raise my voice for it to be heard over The Cough, without raising it so much as to be shouting. Then when a child spoke to me in the moment of The Cough, I had completely lost the battle.

There was an awkward moment at the end of the school day. I was again, in a class covering for a teacher. It was the end of the school day and I was reading a chapter from a story to the children. Within moments of beginning to read, a parent came to the door. She opened the door, and she wanted to speak to me. The door was at the opposite end of the room from where I was sitting with the children. I walked across the room to the door, and predictability the children burst into conversation. I walked towards the lady who was standing at the door. And so, the rumbling of chattering continued. The parent at the door was someone I was unfamiliar with. She began to speak to me. I couldn’t hear her. I moved my right ear towards her, closer to her mouth, to give me a chance at gaining some understanding of what she was saying. Well, I was momentarily perplexed by what happened next. The lady turned to face me. She put her hands on my shoulders, and proceeded to kiss me on both of my cheeks! She had unknowingly mistaken my advancing towards her in order to hear her, as an attempt to initiate this customary Spanish greeting! I observed the tradition, in a brief confused state, and uttered a nervous laugh. I then continued to stand ‘too close’ to her as she proceeded to speak to me. I’m sure she felt the awkwardness, but I’m also very sure she had no idea of the reason for it.

Although the majority of my colleagues are aware of my hearing loss, people often seem to forget. Words are habitually spoken to me in passing in a busy corridor, or across a noisy classroom. I consider these moments a complement. I must not be visibly struggling.

Above all, I am tired. I am working in the hearing world, yet this is a world that I don’t entirely fit into any more. The level of concentration and energy needed to focus on the spoken word all day is exhausting. Working in the hearing world, I am always visually scanning my environment in order to identify the potential movement of speaking lips. With the exhaustion comes, at times, almost deafening levels of tinnitus. With tiredness and noise, the pressure in my ears builds, like a balloon skin being pulled tight; a balloon full of air pushing against the inside of my ear and spilling out into my head, causing my ears to hurt, and the hum of a daily headache.

Every day is a challenge. Working life is still really difficult and I often feel completely drained. But I am glad to be filling my days. I am happy to be making progress in getting some ‘normality’ back into my life.

One Year On… My Thoughts on My Sudden Hearing Loss

It is one year since the day in the auditorium when I suddenly lost the hearing in my left ear. It has been a year spent attending appointments with various specialists, a year of being observed and tested, and a year of taking different medicines and trying hearing aids. I spent almost a year without working; trudging slowly through my days, with the feeling of frustration weighing heavily down on me. A year has passed and there have been no answers and no improvement in my ability to hear. It has been a year that has damaged my confidence. A year that has chipped away at me; with every hurdle and setback diminishing my character. Yet it has also been a year of building myself up; grasping at ways to find strength through my adversity.

It still feels very recent. I still wake up every morning to the realization that I can no longer hear in my left ear. A part of me continues to cling on to the tiniest of hopes that one day I will miraculously wake up with the full ability to hear; that my hearing will re-emerge as quickly and as spontaneously as it disappeared. This hope is an inherent part of me that I’m unable to control or even want to suppress. Yet, this doesn’t mean I haven’t accepted the reality of my situation.

In addition to becoming deaf in my left ear, I have been left with: tinnitus, a sensitivity to loud noises, the inability to identify where sounds are coming from, and difficulty hearing in background noise. Yet worst of all, there is a relentless feeling of pressure I feel in both ears, though more so in my left. It is these other issues that are proving to be more difficult to manage than the hearing loss itself.

Living with hearing loss and associated symptoms poses everyday challenges. Even though I have had no actual improvement in my symptoms, I have a better understanding of my hearing loss. I am improving my coping techniques every day; achieving small triumphs that feel like fairy steps of success. Notably, the discomfort I used to feel when this first happened, when going outside my apartment into a world of noise, has now become a habitual sensation. Although it is very present, it is something I rarely think about; an unpleasantness that has now been forced to the background of my focus. Loud noises are still painful. The sound of emergency vehicle sirens, motorbike exhaust pipes, and the clattering of dishes, all cause me physical pain deep inside my ears. But I have also discovered some noises that bring me comfort. The sound of a gentle river, the wind brushing past tree branches, and rustling leaves force my mind from giving attention to any unwelcome sounds of tinnitus. I have found that wearing headphones helps to block out the noise of the Metro and the noise associated with trains and public transport. For short periods of time, I am now able to listen to my iPod through my headphones, and can enjoy music and listen to storytelling podcasts; this is something I thought I would no longer be able to find pleasure in, due to my sensitivity to noise. I have developed my understanding of practices that can affect my condition. I now realise that if I drink alcohol, eat something with high salt content, or if I don’t sleep well, my tinnitus will be stronger. The presence of loud tinnitus and tiredness, in turn, means I will find it difficult to concentrate well on hearing tasks. Socializing can be demanding amongst background noise. In restaurants and bars I have learnt to sit in a corner, or with my deaf ear against a wall and my hearing ear facing the person I am speaking to, in order to have some chance at hearing them in conversation. I have learnt that it is only possible to concentrate on listening to one person at a time. I have also learnt that with large groups of people and circular tables comes a lot of frustration!

It has been a year of firsts. There was my first run since my hearing loss, where I started to feel so much stronger, and more ‘myself’. There was my first train journey, where I watched the beautiful countryside through the train windows, with the sun on my face, and when I felt so happy to be listening to music through my headphones; thankful for the hearing I had left. There was my first time in a restaurant since my hearing loss, which taught me so much about the importance of selecting a table wisely.

It has been a year of being proactive; writing articles for hearing loss websites, and getting involved in fundraising campaigns for deaf charities.

It has been a year of ‘silly deaf moments’ and mishearing words: sitting with my boyfriend on a terrace and mishearing him say the word ‘parmesan’, and instead hearing ‘lederhosen’, and wondering why my boyfriend would want such a thing sprinkled on spaghetti!

It has been a year of feeling vulnerable. When I’m on my own in everyday places and situations, such as the supermarket or walking down the street, I worry about strangers talking to me, and not being able to hear them, or even worse failing to acknowledge them; if they have addressed me on my deaf side. I worry about cars pulling out of parking spaces, and not registering them until they are moving towards me. I worry about crossing the road and hearing the siren of an ambulance, and not knowing which direction to move out of the way.

It has been a year of frustration. I am frustrated in train stations and airports where I can’t hear the Public Address systems clearly. I become frustrated with bars that play their music loud, or that are bustling with chatter too loud for me to tolerate. I am frustrated at people who speak in mumbled words, or who turn their head away from me during conversation; meaning I am unable to hear parts of what has been said. I am frustrated at feeling like a burden with every time I have to ask someone to repeat themselves. I am sad that I am now unable to continue my career as a teacher in a lively classroom. Yet I am proud of myself for returning to work in a less demanding role, which in actuality is one of the most challenging things I have ever done. I still feel upset with myself when I struggle in conversation. It’s tiring trying to listen to conversation or to communicate for long periods of time. It’s tiring to be around noise. I am tired a lot of the time from trying to listen. I feel frustration in learning simple things again, such as keeping my balance whilst walking downhill. I feel frustration at there being so many questions that doctors don’t know the answers to. What caused my hearing loss? Is this going to happen to my right ear as well? Why do I often feel dizzy when I’m walking, yet rarely when I am running? Why do shopping centre lighting, stormy weather, and crowds of people, cause me to feel dizzy?

It has been a difficult year also for the people closest to me. I know it is hard for people to know what to say to comfort someone who is not ‘getting better’. I know it is difficult to know how to help. My friends and family have lived through this with me and have shown me overwhelming support. But, it is my boyfriend who has lived the experience closest to mine, and who has felt not only the frustration that I have, but has also learnt with me how to deal with my hearing loss. The unfaltering support, patience and care he has shown me, and continues to do so has undoubtedly given me the strength to deal with the new challenges I now face.

This year has been difficult. Yet this year has had a huge impact on my personality, where my priorities now lie, and the way I view my life. I am stronger as a result of this year. It is also because of this year that I have realized the enjoyment I have in communicating through writing. By recording my experiences and thoughts in my blog, I have made sense of my feelings and gained strength. I hope also to have given others an insight into my world, and some of the difficulties experienced by someone with hearing loss.  Writing is a pleasure; one which I can thank that day in the auditorium for the moment the world to the left of me abruptly fell into silence.

 

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