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 trialing 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 traveling 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 to my deaf side. Without the aid I would be clueless to 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 mold correctly inside my ear, and within minutes, the aid would have squeezed its way out, so that it was no longer fitted snugly. This meant that throughout the day, I would keep having to push the mold 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 motor cycle 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 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.

 

Playing the game: another hospital appointment

Going to a hospital consultation, in a country where I only speak a little of the language, is not dissimilar to my time spent as a child playing adventure games such as Monkey Island, on my old Amiga computer. Yet instead of following the misfortunes of the hapless Guybrush Threepwood as he struggles to become the most infamous pirate in the Caribbean, the focus is on me, an English girl; half-deaf and with limited Spanish, trying to fathom her way around a Spanish hospital system. Yeah, it doesn’t sound as interesting, and it’s not, but it presents a puzzle in itself nonetheless. As in such adventure games there are questions, feelings of apprehension, and puzzles that must be solved before progressing with the story and moving forward in the game.

My game begins with the intense feeling of nervousness whilst sitting in the waiting room. I sit asking myself various questions: Will the specialist speak English? Will they listen to my Spanish and take me seriously, even though I’m obviously not fluent? Will they slow their speech down so I can understand some of the words? Will they be OK with writing down the names of any necessary tests, so that I can go home and Google them? Will I even hear them when they call my name!  My main hope is that they will be patient with me.

The next part of the adventure is the actual consultation. If I am not fortunate enough to meet a specialist who speaks English, I feel the difficulty level increase immediately, and uneasiness starts to claw at me. Trying to make sense of what a specialist is saying, involves me grasping at the words of which I know the meaning of, and putting them together as quickly as I can. Sometimes I find myself listening and trying to concentrate so hard, that I actually end up not concentrating at all. Sometimes I succeed in listening carefully and I manage to understand some words. However, in the time it takes me to make sense of the words, I end up missing the rest of what has been said. On occasions I am handed papers and may be told to take them to another department or area of the hospital, or to use them to inform another member of staff as to the nature of a follow up appointment. The next level follows my journey as I walk around the hospital following signs, and then coming to the realization that I have no idea where I’m going, or why I’m even walking around clutching my paperwork in the first place!

Four weeks after my appointment with the new ENT specialist, I went to the hospital for my referral with the maxillofacial doctor. The upper jaw is referred to as the ‘maxilla’, and the type of doctor I would be seeing, specializes in treating problems related to the hard and soft tissues of the face, mouth, and jaws. I went to the hospital by myself. As usual, my game began with me sitting and waiting anxiously in the waiting room. A mixture of questions were eagerly pushing themselves forward; fighting to be at the forefront of my mind. I scanned the faces in the room. There were people here of all ages. I had found myself sat next to an old man, who kept coughing loudly into a crumpled handkerchief. Whilst battling to ignore the interrogation of persistent questions in my mind, I couldn’t help but glance at a few individuals around me; studying their faces, and wondering why they were here. I’d focus for a while on someone’s features; looking at the shape of their jaw, and assessing the symmetry of their face, until I felt they had sensed my stare, and were about to look back at me. I’d then quickly move my eyes away from my subject.

My name was called, and I walked into a small room. Immediately the specialist started speaking in Spanish. Difficulty level up! I started to answer her questions, and I apologized that my Spanish wasn’t good. She reassured me by saying it was OK. The doctor had a young face, dark hair and radiated compassion. She listened to me as I explained how I had suddenly lost my hearing. She was writing everything down. Then she examined my jaw. She asked me to open my mouth as wide as possible and she felt the joint. She then asked me to close it. I repeated this a few times and she asked if I had any pain in the joints. She placed a tiny piece of card with measurements on, next to my front teeth, and told me my teeth were 3mm to the left, off centre. Then she told me that I was going to do a test. If the results of the test were negative, the treatment would be physiotherapy and wearing a night-time mouth guard. But, if the test showed that I have…then…Oh dear, my skills of following the Spanish conversation were dwindling. I had missed some important information. I told her I didn’t quite understand. She told me not to worry, and the main thing was that first I would need to do the test. I asked her to write down the name of the test and condition she was referring to, so I would be able to research it later at home. Then I was handed some papers and told to go to the receptionist.

Next I went around the corner to the receptionist. As she was speaking to me there was also another woman in the small room, speaking very loudly on the phone. I couldn’t hear my next instructions.  I apologized to the receptionist and said that I didn’t understand and that I couldn’t hear very well. She kindly accompanied me out of the door, handed me some more papers, and directed me to take them to a window down the passage. I thanked her.

Next level. I then walked forwards as far as I could go – which is the direction I was given, and wandered around for a bit. Then it hit me, the moment of realization that I didn’t know what I was doing or where I was supposed to go, or why! I spoke to a nurse who was talking to another nurse in the corridor. She directed me and told me I needed to get a ticket and then go to a window. I walked again in the direction she told me, but didn’t find a ticket machine. Hmm puzzling…I spoke to a man who was sitting at the Information desk in the entrance, and he printed me a ticket. Oh, there wasn’t a ticket machine – this man was in charge of tickets! Then he pointed to the first window and told me I was next. Next for what, I wasn’t sure! I handed the woman behind the glass screen my papers, and she was very patient as she spoke to me. I had to put my ear into the small opening of the glass, so I could hear some of what she was saying. I managed to make appointments for the test and also a follow up appointment. Then I went back to the receptionist in the maxillofacial area, and showed her my papers. She checked them. She seemed happy with my accomplishments and we said our goodbyes.

When I returned home I Googled the words the doctor had written down for me. The ‘gammagrafíatest was a ‘bone scintigraphy‘.  I would be having an injection of a dye of radioactive material. This dye would then travel around my body and emit radiation. Then a camera would take pictures of how much of the dye accumulated in my jaw bones. It was a test to rule out a condition called ‘condylar hyperplasia‘ which is a rare bone disease that affects the jaw bone, and causes asymmetry in the jaw amongst other things.

Anyway…Game over, for this day at least!

My first run – Starting to feel normal again

Six months after experiencing sudden sensorineural hearing loss in my left ear I decided I was ready to go for a run. My body had been through a lot during the past few months. The hearing loss had been a shock. I had felt frightened and helpless. My body had felt like a vessel used for experimentation; exploring the effects of different types of drugs on my condition: anti-inflammatories, nasal sprays, intravenous steroids, intravenous anti-viral medication, injections of steroids through my ear drum and different types of vasodilators. My body had felt delicate and vulnerable; I had experienced side effects of weakness, loss of weight, low blood pressure, tiredness and dizziness. But enough was enough; I wanted to start to feel more normal again. I love running. Running always makes me feel happy. It makes me feel strong. It is also a time where I can completely forget about any worries or unwanted thoughts. I wanted to switch off from the recent past.

I had asked my chiropractor, the week before, as to whether he would recommend that I start running again. I remembered that, when I first met him, nearly 4 months ago, he had asked about what kind of exercise I did. Due to the problems I was having with my neck, he had encouraged me to take a rest from running until my neck was feeling better. At this time, I was also dizzy and taking medicine that my body was struggling with, and so didn’t feel strong enough to able to go running anyway. Yet now I wasn’t too dizzy and I wanted to feel stronger. I missed running and thought it might help cheer me up, and help me on my road to recovery. It was also another thing that I would be able to do for the first time with unilateral hearing – another experience to say I have tried, since living with single-sided deafness.

I waited for a few days after visiting my chiropractor, to go for my run. I wanted my first run to be on a sunny day. I wanted my first run to be a good run. I wanted to wake up, see the sunshine, and be spurred on by the beautiful Madrid weather, to go outside and have a go! I did exactly that. I had checked the weather forecast beforehand and it was going to be a nice day. I got out of bed when my boyfriend had left for work, and I rushed to the window. The sun was shining optimistically in the sky, and I decided today was the day.

Putting on my running clothes, I noticed how my body had changed since I had last worn them in the summer before I lost my hearing. My legs were thinner and my bottom was flatter and my stomach looked small and weak.

I walked briskly for 15 minutes to the nearby running track. It is difficult to run on the streets of Madrid as there are always lots of people around, even during the daytime. I didn’t want to feel vulnerable whilst stuck in the traffic of people. I enjoyed the sun, and breathed the air; taking strong breaths to fill my lungs. I find that when I go running, I realize what a small part of my lungs I actually use during everyday activity. Shallow breathing is a habit of mine, as I am sure it is for many people. It’s almost like we forget to breathe, and it’s actually quite an effort to fill your lungs with every breath, when you’re not used to doing it.

When I got to the track, I was surprised at how many people were there enjoying their morning exercise. I immediately started to run; making sure I was moving slowly and focusing on keeping my shoulders slightly back and good posture. I was listening to a storytelling podcast though my running earphones. I didn’t pay attention to the noise of the tinnitus in my ear that resounds with increased stubbornness when the sounds of the outside world are blocked by ear phones. I didn’t pay attention to the fact that I could only hear the story in my right ear. I was purely happy. I was running in the sunshine, enjoying listening to stories. I was feeling normal again.

The only time I thought about my hearing loss and the pressure and tinnitus in my ear, was when I actually realized that I hadn’t thought of these problems.  So the only time I thought about these issues was actually thinking about the absence of thinking of them! Exercise is well known to be a distraction from life’s worries. This was my proof. My first time running with unilateral hearing was a success.

I sent my sister a message later that day, telling her about my achievement. She replied and wrote that she was so glad that I had been for a run and that I was ‘getting my Carlyness back’ 🙂

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 ear plugs in my ears at night to sleep with, as I am a very light sleeper. The ear plugs 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.

Testing and Hope

Less than a week following my consultation with the new specialist, I went to meet with a private hearing healthcare professional to discuss hearing aid options. When I’d made my appointment I had asked if there was anyone who spoke English. My hearing loss in itself has brought communication difficulties. Trying to manage it and to make advances with consultations in a second language has added extra challenge; an extra layer to tackle and deal with. The receptionist said she only spoke a little English. I wasn’t sure if I had managed to convey my question clearly as to whether there was an audiologist who I could consult with in English; not whether she, the receptionist, spoke English. Of course I am trying to learn Spanish, and always try to communicate with people in shops, restaurants and cafes in Spanish. But when discussing something as important as my health, and what could possibly also be a big investment (hearing aids can be very expensive), I wanted to make sure I had optimum chance of comprehension and the ability to ask questions and to communicate my needs and feelings successfully.

I arrived alone and very nervous. Not only was I anxious at the prospect of yet again trying to convey, in Spanish, the fact that I had ‘suddenly’ lost my hearing in my left ear, but also because this was the first step to a possible big change in the way I live my life. I was admitting to myself, and making peace with the fact, that I wasn’t going to be able to hear again in my left ear. I hoped to gain some support. I hoped to gain some closure. I was also putting myself again, in the vulnerable position to perhaps be told that there would be nothing I could try that could help.

I sat in the waiting room, for about 5 minutes, and then was greeted by a friendly looking Spanish woman in a white jacket who said ‘hello’ to me in unconfident-sounding English. A man followed the woman, and he shook my hand and greeted me with a much more comfortable version of ‘hello’.

I was led directly into a hearing testing booth. The woman who I assumed was the audiologist, went through the door to the other side of the booth, and sat opposite me; observing me through a transparent screen. The man came into the room with me and began to explain the procedure in English. I was incredibly relieved – this man was here solely to translate for me. He explained that they were going to do different hearing tests to see if there was any type of hearing device that could help me. The man then joined the woman on the other side of the glass. Next proceeded a series of different tests.

I carried out the usual Pure Tone Audiometry hearing test; raising my hand every time I heard the ‘beep’ sound in my hearing ear. The man gave me a thumbs-up gesture after my first test – the testing of my right ear. Then they tested the left (deaf) ear. As usual they had to play the sound of wind into my good ear, whilst testing the deaf ear. My head was conducting the sound. My good ear could hear the sound that was being played into my bad ear, when there was sound played at loud levels.  The wind noise was to distract my good ear from hearing the sound and confusing the results of my left ear. As usual I could only hear a few beeps. They then carried out the Bone Conduction test. This tests how well sounds transmitted through the bone are heard. As usual, I could not hear anything for this test, in my left ear. Next they did a Loudness Discomfort test. For this test, the audiologist played increasingly loud sounds into my ear, and I had to say when the sound was uncomfortable. I was glad they were carrying out this test; one which I hadn’t previously done. I had been struggling with everyday sounds, and my tolerance of noise, especially when loud, was noticeably lower than before I lost my hearing. I guess it is important for audiologists to perform this test when deciding on appropriate hearing aids: since hearing aids amplify sound, the audiologists need to ensure this sound is within the comfortable range for their customers. Next they performed a Word Recognition test which tested my ability to correctly repeat back words at a comfortable loudness level. The audiologist said words and I had to repeat them. The words were in Spanish, and I joked that it was like a Spanish language test. They assured me jokingly that I wouldn’t be marked on pronunciation. I carried out the test, in a language that I am still learning; I struggled with the rolling of my r’s for some of the words.  My right ear seemed to cope with this test with ease. My left ear struggled. All I heard in my left ear were some distorted noises; high pitched and mostly two syllables.  I couldn’t relate the noises to letter sounds or words. I couldn’t verbally make the strange noises I was hearing. I just shook my head after each distorted word. Then the audiologist changed a setting, and I could hear every word she said in my left ear! It was an extremely painful level of loudness and seemed high pitched. But I could hear, and this was amazing! I was hearing words! Brimming with emotion, I repeated back, in my best Spanish, the words she was saying. The audiologist and translator spoke to me through the glass about how the audible sound in my left ear felt. I told them that it was wonderful to be able to hear, but that it was very uncomfortable.

Next we went into a room with a desk, and the audiologist and translator spoke to me about what they thought would be my best option. The audiologist told me that the only option she thought that would work for me would be a Signia Siemans Pure Contra Lateral Routing of Signal (CROS) hearing aid.  I was told that as there was only the tiniest bit of hearing in my left ear, they couldn’t promise it would be a great help. But they said they might be able to get me 30 percent hearing…maybe 40 percent. The main benefit would be that I would have more chance of being able to hear better in background noise. Using this technology, a hearing aid-like device on my deaf side would use its microphone to pick up sound from that side and send it to another instrument at the better ear; wirelessly via bluetooth. The sound would then be introduced into the good ear. Wow! It sounded perfect! They showed me an app I could get on my phone that I could use to change the settings. If I was in a restaurant I could make the microphone focus on where the people were sitting, e.g. if they were positioned in front of me, I could press the corresponding areas of a diagram on my phone, and the microphone would focus on these areas. There was a setting for music. If I wanted to go to a live music show, I could press a button and it would pick up the music in surround sound. I told them I would like to try the device, and they asked me what colour I’d like. I hadn’t even thought of this! I asked the audiologists opinion, and she suggested one that matched my hair colour.

I had moulds taken of my ear and was given an appointment for a week later, where they would fit the hearing aid and show me how it works. I would be trying to use it for an hour or so each day, and then increase the time every day, and would have regular updates with the audiologist.

Finally, some hope.

 

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 skeptically 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 that, “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 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.