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.

Review of My New Ear

Receiving my new ear was a positive experience. I was hoping my CROS hearing aid would give me some hearing ability on my left side. I was hoping it was going to give me a chance of hearing some elements of speech on my left side; to help me gain some confidence in communicating with others. I was hoping my CROS hearing aid would provide me with some support with hearing in situations with background noise.

Contra Lateral Routing of Signal (CROS) is a hearing aid technology for people with unilateral hearing. The CROS system is for a user who has relatively normal hearing in one ear and has hearing that can’t be aided in the other. The receiving behind-the-ear device on the deaf side transmits the sound to a device on the good side. The user hears the amplified sound from the deaf side in their good ear. The person hears the sound from the good side naturally in their good ear, without amplification.

I would be trialling the device for three months to see if it would be useful for me. If I decided that it wasn’t helpful, then I would be entitled to a full refund.  The CROS hearing aid technology was relatively new, and I’d read that some people really benefit from their CROS hearing aids. I even read someone’s account saying that with the aid they were able to hear in background noise, and it was like they didn’t have a deaf side anymore.

I was very happy with the way my new ear looked. The aid components were a similar colour to my hair and if I chose to wear my hair down, they were almost invisible. However, I actually liked other people to see them. When travelling on the Metro, for example, I would tuck my hair behind my ears so that they were visible. I liked that my disability could now be seen. Before I received my hearing aids, I had felt some frustration at the fact that people had no visible clue of any difficulties I might be having with communication. But with my new ear, if I failed to react to someone on my deaf side, or didn’t move out of the way for someone, I had a visible reason for my lack of response. This made me feel more relaxed on public transport, and in the city. I didn’t feel like I was constantly looking to my left to check if there was someone there, or if the lips of the person next to me were moving.

The main positive outcome of my new ear was that it was really wonderful to have some sense of hearing again in my deaf ear. If someone was speaking to me on my deaf side, the aid would make a high-pitched distorted sound, similar to a ‘beep’,  for each syllable spoken. These beeps would alert me to turn and focus my attention on my deaf side. Without the aid, I would be clueless about the presence of anyone next to me on this side. It was comforting to know that if there was a sound on my deaf side, such as someone speaking, or a car approaching from the left whilst I was crossing a road, then I would be alerted.

I also had some frustrating experiences with my new ear. The component in my deaf ear kept popping out. I would fit the mould correctly inside my ear, and within minutes, the aid would have squeezed its way out, so that it was no longer fit snugly. This meant that throughout the day, I would keep having to push the mould back into my ear. Also, although I was happy that I would be made aware if someone was speaking on my deaf side, the hearing aid didn’t help me understand speech. The high pitched beeping that occurred in time with spoken syllables became an uncomfortable sensation. After my hearing loss, I had developed a sensitivity to noise, and the aids job was to amplify sound; this obviously did not help my sensitivity situation. I became frustrated because I couldn’t make sense of the beeps. I knew they represented words, but however hard I tried I couldn’t hear any difference in the tones to identify letter sounds or words. My good ear was also hindered. My brain seemed to be paying so much attention to the strange sensations and uncomfortable noises brought on by the introduction of my new ear, that it struggled to concentrate and understand speech. So in effect, the aid actually hindered my ability to follow conversation.

One of my hopes had been for the aid to help me hear better in background noise. This was not the case. The mix of music and chatter experienced in a restaurant was overwhelming for my new ear. It would produce screeching sounds and amplify all the noise I didn’t want to focus on. Going out for a meal for a friend’s birthday with a group of people, was a confidence draining experience. I was only able to focus on one person talking, if I could get close enough to them with my good ear to hear them. This meant that I wasn’t involved in the dynamics of the group chatter. I felt isolated and I resorted to smiling and nodding at people to fake my following of any group discussion or jokes. This is a similar overview of my restaurant experiences with more than one person, when I am not wearing an aid. With the aid, the screeching noises also made it difficult for my good ear to focus on conversation.

The amplification of sound from my new ear of everyday city noise such as motorcycle exhausts, building works and sirens, was at times very uncomfortable. Therefore a walk around the city would result in me opening up my aids or covering them to stop them working when confronted with one of these overly intense sounds. My life in a busy city didn’t seem to be a suitable place for my new ear. The city noises when amplified were just too uncomfortable, and weren’t helpful in aiding me to decode speech or make sense of the noises around me. The only place where the amplification of noise didn’t cause too much noise discomfort was at home…but home was the one place I felt like I didn’t really need to wear my hearing aid. At home, I could generally hear OK when speaking with my boyfriend in the relatively quiet environment of our apartment.

There were also some strange experiences. One day, I had fitted the right component of the aid into my ear, when I started to hear what sounded like a radio. I had no idea where the noise was coming from. I thought that it was maybe something to do with the Bluetooth connectivity of the aid. Later I thought that it could have been noise being picked up from the television that was playing in the living room. Another time, I fitted the aids into my ears, and I realized that they felt much better; The sounds being produced seemed more natural and I wasn’t receiving the uncomfortable screeching noises. Then I realized the reason they were feeling more natural, was because the battery had died – The aids weren’t turned on! I was hearing normally in my good ear but without the interference of the beeping from the device into my deaf ear!

I had willed my new ear to work for me, but it hadn’t provided me with the support I had hoped for. After three months of wearing it, I returned my CROS hearing aid. I felt some sadness when saying goodbye to my new ear as it had provided me with some hope.

 

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Day Four With My New Ear

My boyfriend and I had planned to go to Cercedilla, a nearby mountainous town, an hour from Madrid by train. It is a beautiful town surrounded by nature, and is a perfect place for hiking. We were going there for the day to escape the busyness and noise of the city, and to enjoy a gentle walk in the mountains.

It was day four of wearing my hearing aid. I had already tested out my new ear whilst watching television and whilst walking outside. I was going to use this opportunity to try my new ear in some other, more challenging, situations; the Metro and on a train.

The first test was the Metro. I was standing with my boyfriend on the platform waiting for the train to arrive. Since losing the hearing in my left ear, and gaining a sensitivity to sound, the noise of the Metro approaching the platform can feel painful and unpleasant. I can feel it piercing deep inside my ears. Whilst wearing the hearing aid, this uncomfortable feeling was accentuated and my immediate reaction was to try and cover both ears with my hands in an attempt to soften the noise. When the train was approaching, a guy came to ask us for something. He was speaking to us and making animated gestures with his body. The noise of the train and his voice were processed by my hearing aid and were turned into a harsh series of beeps. I couldn’t understand what the person was saying. Every word he spoke made a metallic beeping sound when it reached my new ear. My boyfriend explained later to me that the guy had first spoken in Spanish. My boyfriend hadn’t understood the guy and had told him he was English; he hadn’t wanted to encourage conversation with the seemingly unsavoury character. The guy then replied in English, expressing to my boyfriend that he wanted to go to a café. I hadn’t comprehended any of this small exchange of words. I hadn’t even realized that the unusual character had spoken in two different languages. All the sounds of the Metro station were amplified in my new ear; the bell sound to signal the train approaching and the screeching noise of the decelerating train. My new ear was supposed to be helping me to hear better in the presence of background noise. This was not the case. The amplification of sounds and the accompanied beeping noises were dominating my listening skills, which in turn was distorting and obstructing the understanding of my good ear. Normally, without any hearing aid, I could have moved closer to the guy who came to speak to us and put my good ear next to him. I would have been able to hear some of what he was saying. The hearing aid had actually hindered any chance I had of following the conversation. I felt a momentary sense of deflation crushing me. Confusingly, however, I also felt some optimism. Although the metallic noises I was hearing in my new ear weren’t actual words and although they were distorted and difficult, it was still comforting to hear something; anything in my deaf ear.

Whilst sitting on the Metro I also noticed something positive. I was sat next to a girl who was sitting on my deaf side. She was talking to her friend who was standing up next to her. Normally everything would fall into silence on my deaf side on the Metro, and I would be oblivious to the world to the left of me unless I turned my head to see the activity. But this time, with my new ear, I was faintly aware that the two girls were speaking. Although I couldn’t hear any helpful letter sounds or words, I was hearing a slight beep for each syllable they were speaking.

The second test was the train station. On entering the train station I simultaneously entered my bubble of noise. Noises of train announcements and the chatter of people merged together. In large covered spaces with many sources of noise, the sounds seem to bounce off one another and encircle me; forcing me into my bubble. It is a bubble of misunderstanding and bewilderment. It is a bubble of pressure that dominates the inside of my head and ears. It is a bubble of isolation. My new ear was supposed to be helping me to hear better in the presence of background noise. Again, this was not the case.

As to be expected, the train was also bustling with the chatter of adults, and with the weekend excitement of children’s voices. On the train, I opened the battery compartment of my hearing aid on my deaf side, so as to stop my new ear picking up the train noise. I decided that I would prefer my left ear to be in its world of deafness; ignorant to the bustle that surrounded it. I played music from my iPod into my good ear. It was a beautiful sunny day. I’d been avoiding wearing earphones. I’d been avoiding music. It had previously felt too intense in my good ear. But on this day, above all the chatter and train noise, it felt amazing to be listening to music in my little world. On this day, although the tests of my new ear had proved somewhat disappointing, my body was showing me that it was starting to adjust to my unilateral hearing. Being able to listen to music for a short time without too much discomfort was a small but wonderful improvement. It was some encouragement. Small triumphs were spurring me on. During the train ride, with my music playing and the sun shining, and with my view of Spanish countryside whizzing past my window, I was holding back little tears of contentment.

My New Ear

A week later I returned to the private hearing healthcare centre to receive my Contra Lateral Routing of Signal (CROS) hearing aid; my new ear!

The audiologist came to greet me, and she took me into the room with the desk, where I had previously had my consultation the week before. She introduced me to another man who was going to be my translator. On meeting him, I did not feel the immediate sense of trust, or reassurance that I had felt with my previous translator. I asked him if he would like to sit down next to me, and he declined; choosing to spend the entire time standing up near the door, where he paced around a small area of floor, occasionally pausing to lean against the wall.

Immediately I was shown the hearing aid. The CROS hearing aid helps one ear, yet comes in two small parts: a single microphone and a single receiver contained in two individual devices. They were the sandy brown colour I had chosen with the guidance of the audiologist. They were very small with clear little tubes and buds on either end to fit into my ear. The first thing the audiologist showed me to do, was how to insert the batteries. She opened a small compartment, pulling gently at the bottom of the aid, and carefully placed in the circular battery. She peeled off the protective sticker that was covering the battery and told me that as soon as the paper was off, the battery would start to use power. I then took the other hearing aid to insert the battery, and copied her demonstration carefully. She told me to open the battery compartment when I take the aids out at bedtime, so as to reduce the power drainage. She fitted them both into my ears, and they were connected to wires and her computer. She then played sounds into my good ear and I had to do the usual test of putting up my hand when I could hear the beeps. Then she did the test of my deaf ear. There was a constant noise that sounded like a fan in the room coming from somewhere I couldn’t identify, and also background noise of people talking outside. It was difficult to focus. I could hear some of the beeps. I occasionally put my hand up when I thought I could hear something but wasn’t sure; due to the background noise distractions. But I could hear some quiet beeps, which was an improvement. She asked me how the hearing aids felt, and I told her that the sounds seemed to be a little too loud. She adjusted the program on the computer and the volume of the hearing aids reduced.

The audiologist then challenged me to insert the aids into my ears, without help, and she handed me a mirror. The right hearing device fitted easily into my ear. The left side, however, proved much more difficult. Since losing my hearing I have noticed a change in the shape of my left ear. If I put my finger in my ear as far as the little piece of cartilage that covers the entrance to my auditory canal, it feels as though the bony floor of my ear is raised. Hence the small hole that leads to the rest of my ear seems very much reduced in size. I used to wear foam earplugs in my ears at night to sleep with, as I am a very light sleeper. The earplugs used to mould and fit easily into my ears and would stay in place all night. Now, when I try to put a plug into my deaf ear, it is difficult to find a successful position to insert it, and it almost always very quickly pops back out. I failed twice at trying to fit the ear mould of the hearing aid into my left ear. My ear was now red and my hands were shaking nervously as the audiologist and translator watched me intently. I figured out that I had to push the fitting down and then upwards whilst twisting it at the same time, to make sure it was fitted correctly inside my ear. When fitted, the hearing aids could hardly be seen, and the audiologist told me they were invisible.

The translator asked me how I had lost my hearing, and I told my story yet again. He asked the usual questions: Why did it happen? Was I receiving treatment for the pressure? How long ago did it happen? He asked me what my expectations were of the hearing aid: When are my difficult times? How do I think the hearing aid could help me? He commented on how I wasn’t a ‘typical’ customer, who he described as old, with some hearing loss in both ears. He kept telling me to not expect too much. I know that it would have been unprofessional of him to raise my hopes, but he was doing the opposite. He was making me feel naïve in my understanding of the magnitude of my situation. I wonder if he realised how far I had come in my story. I wonder if he realised how much effort and courage it had taken to walk into the audiologists, make the appointment and talk yet again about what had happened; all in a foreign language… and still keep a smile on my face whilst speaking to them.

With my hearing aids in place, I said my goodbyes and thanked the audiologist and translator for their help. I was to contact my audiologist if I had any questions or needed any help with anything. My next appointment would be in a months time. I was to use the hearing aids for 2 or 3 hours each day for the first week, unless they felt OK, in which case it was fine to wear them all the time through the day.

I left feeling less optimistic than after my first appointment, but I was still hopeful.

The walk home was a noisy adventure. The beep of the traffic lights sounded uncomfortable and distorted. I walked past a big group of students who were all talking and who sounded like screeching bells. At that point, I remembered what an old friend of mine told me when he first received his cochlear implant. He told me that the chirping of birds sounded like bells, and the noise of peoples voices sounded like Mickey Mouse. I knew this wasn’t exactly the same type of circumstance, but it was similar. I was sure it would take time to adjust to the new types of sounds I was hearing through the hearing aid. I spent my time on the walk home, pressing the volume button up and down to see which level felt most comfortable.

When I arrived home I didn’t really know what to do with myself. I think I was feeling a little bit in shock. I was also feeling some disappointment due to the fact that the sounds from the aids were making me feel very uncomfortable. I was scared they weren’t going to help me. I was still hopeful though. I was home alone and wanted to test my new ear by talking to someone.  I kept trying to test the hearing aids out. I clicked my fingers near to my ear, but couldn’t hear the sound. Then I tried playing a YouTube song on my phone – Don’t Think Twice Its Alright, Bob Dylan – holding it to my deaf ear, as if it was a phone call. I could hear some of the song, but I wasn’t sure which ear I was hearing it in though. I wanted someone to call me on my phone to try out my new ear. I waited for my boyfriend to return home from work, eager to have a conversation with him.