CROSSSD Study – You Can Help with Vital Research!

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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 aidto 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.

A Consultation With the New Specialist

Nearly six months after my sudden hearing loss I was in my Spanish hospital with my boyfriend, yet again for another consultation.

When I first entered the consultation room, I was dismayed to see yet another Ears Nose and Throat (ENT) specialist whom I hadn’t previously met. It was a specialist who was not aware of my story and who I sceptically assumed was going to ask me to repeat my story yet again, and then tell me that he was sorry, but due to lack of research on my condition, he would be unable to offer me any further help and that he would see me again in three months to see if there were any changes.

Before meeting with the new specialist I had carried out the usual hearing tests. As usual, I was told that nothing had improved. The specialist had a friendly and sensitive manner. He asked me about how my hearing loss had occurred and whether I had previously had any ear-related problems. Then he looked at my hospital notes and told me that my MRI scan was normal. This was probably about the third time I’d been told this information. He said there was some ‘shading’ in an area of the image, but I didn’t hear the rest of what he said, and he didn’t seem to speak about it with any importance. Then he looked at my results from my Brainstem Auditory Evoked Potentials test. He proceeded to explain to me what the results showed. This was the first time the results had been discussed with me in any more detail than just telling me that they showed the same as my hearing test – that I can’t hear in my left ear. He drew a diagram of the ear and showed how each peak on the graph produced from the test, related to different parts of my ear. The results showed that sounds weren’t being heard because sound wasn’t successfully reaching my ‘caracol’. In Spanish, they call the spiral-shaped part of the inner ear known as the cochlea the ‘caracol’; which translates as ‘snail-shell’. So for some unknown reason, sounds weren’t able to be interpreted by way of my cochlea, and hence the relevant signals needed to hear, weren’t being sent to my brain.

The new specialist read my notes from the ENT doctor with whom I had consulted a month earlier in London. He didn’t agree with the diagnosis of Cochlear Hydrops as being the reason for my hearing loss. He explained to me that this is usually a condition that is not continuous and comes in episodes. Although I have the symptoms, mine are continuous, not sporadic. I continuously have pressure in my left ear. I am continuously deaf in this ear. My hearing doesn’t fluctuate. He told me, however, that ultimately the diagnosis isn’t that relevant, as the main point of importance was now finding ways to help make things more bearable for me.

The new specialist then surprised me by asking me about how I was coping. I told him that the insistent pressure in my left ear was very uncomfortable. I told him that going outside into the noises of the city was also very uncomfortable and a habitual challenge for me. He commented in English and said, “This kind of thing can make you crazy.” He told me and my boyfriend that I ‘have to be strong’. I told him that I know my situation could make someone crazy. I told him that I know I need to be strong. I told him though, in a friendly tone; appreciative of his even mentioning of these issues. This was the first time any hospital specialist had shown any understanding or even alluded to the difficulties I was facing with the everyday. He asked me about my work. I told him I was not currently at work due to my hearing loss. He asked me why. I told him that I was a teacher and that I worked with very young children. I explained the difficulties I had when I tried to return immediately to the classroom, when I first lost my hearing. I asked him whether he thought I would be able to go back to my teaching job. He said he thought I could try. He told me that everything will take time. I needed to adjust. He said that I am still relatively in the early stages of learning how to live with unilateral hearing. He stressed the importance of trying to return to my normal life and routine. When I told him how young the children were that I teach, he added, “It will be very difficult for you though.”

Then the new specialist widened the scope of his investigations. He asked questions about my kidney. I only have one kidney on my right side. He told me that hearing problems and kidney issues can be directly related, as the kidneys regulate the fluid in the body. My hearing loss was possibly an issue with the fluid in my inner ear. Often people with fluid problems in their ears are given diuretics to force the kidneys to excrete more salt in the urine. He was keen to try this measure, as the diuretics could possibly help with my ear pressure. However, he wanted to check first that it was safe to prescribe me diuretics. So he made an appointment for me to have a consultation with a nephrologist (kidney specialist).

He also asked about my jaw. Oh my goodness, I couldn’t believe it! From the very first moment I entered the hospital, at the start of my story, I had been asking the hospital doctors if the problems I have with my jaw could be contributing to the problem in my ear. I had been constantly told that there was ‘probably’ not a connection. This time I hadn’t even mentioned my jaw. The new specialist had asked me the question! He said that my jaw problems could also be a cause of pressure in my head and my ear, and hence could be making my condition worse. So he made an appointment for me to see a maxillofacial doctor (specialist of the head, neck, face and jaw).

He suggested I go to a private audiologist to discuss hearing aid options and ways of helping with my discomfort. He said that there were four options that could be worth trying:

  1. Wear a normal hearing aid in my deaf ear to try and amplify the sound to a level that might help to give me some hearing. It probably wouldn’t be a useful level of hearing, but it might help with the feeling of disorientation, tinnitus and pressure in my ear.
  2. If the first option didn’t work, then I could try a Contralateral Routing Of Signals (CROS) hearing aid. This type of hearing aid would take the sound from the deaf ear and transmit it to the ear with better hearing. This could help me hear better in background noise.
  3. If the CROS hearing aid didn’t work, then there was an aid called a Bone Anchored Hearing Aid (BAHA). Having a BAHA would involve an operation where they attach a hearing aid on to a bone near the ear and it would pick up sound vibrations – this would obviously be a more invasive measure.
  4. There was also a device that could ‘mask’ tinnitus sounds in my deaf ear. This would play sound, or noises, or music, into the bad ear. Although I wouldn’t be able to hear the sounds, it could help with my tinnitus.

It was so refreshing to speak with someone who was curious about the other issues affecting my ear, and who seemed to genuinely want to help. Maybe this is the same treatment I would have received from any of the other ENT specialists at this point in my story; now that immediate treatment had been administered; now that we had waited for six months; and now that acoustic neuroma,  stroke, or an autoimmune disease had been discounted. Even so, this specialist had shown a deep understanding of the day-to-day issues I was facing. He knew about and acknowledged that I would be having some difficult days. This comforted me. I wasn’t being weak or over-accentuating my difficulties.  What I was going through was hard. It was supposed to be hard. I was dealing with it. I was having good days and difficult days. This was normal. Also, he explained things in so much detail, and had given us suggestions for further actions. I was incredibly grateful to have consulted with him. I now had a new plan with many elements, and I would be seeing him again in a month to discuss any new findings.

This time when leaving the hospital I didn’t cry. I walked out of the hospital with my boyfriend, breathed the fresh air, and was full of positivity.