Specialist appointment part 2: Ear bubbles, a blocked nose… and a plan

…The specialist only briefly addressed my noise sensitivity. It had been my understanding from my previous appointment, with the previous specialist, that the reason for me meeting with this particular Ears Nose and Throat (ENT) doctor, was to receive some sound therapy. This therapy would help retrain the auditory processing centre of my brain to accept everyday sounds. Instead of therapy, I was given a suggestion of a procedure I could perform by myself. The advice I was given during this consultation was to subject my hearing ear to noise or music, at a volume level which I found too loud, for a period of 20 minutes. I was to do this 3 times a day. I was given the example of listening to nature sounds on my headphones, whilst keeping the volume as loud as I could possibly bear it. The ENT specialist told me that eventually I would be able to turn the volume up to higher levels. He told me that there were special hearing centres I could go to, but these would cost money, and it was customary and also effective for patients to carry out this treatment themselves. I found it curious that in the same appointment in which I had been told to avoid loud noises in order to protect my only hearing ear, I was also told to subject the same ear to noise that would cause me discomfort.

After feeling yet a little more deflated on realizing the only therapy or support this specialist was going to offer me, was the small piece of advice he’d just given me, and not a series of therapy sessions, which I had been hoping for, I started to hastily ask my friend to enquire about a few more issues; as the feeling of outstaying our allotted time started to encroach upon us.

I asked my friend, who had accompanied me to help with translation, to question the specialist about the operation I had been told about months ago, which would straighten my nasal septum, in order to help me breathe more easily. The specialist had no visible response to this enquiry, and he continued scribbling notes into my medical history booklet. With perseverance, intent on maximizing my time with the consultant, I asked my friend to mention the feeling of pressure I have in my ears, and about my bouts of dizziness, and to ask if there was anything I could do to relieve these symptoms. Without raising his head to acknowledge us, he pointed to an examination chair across the room from where we were sitting, and he mumbled something inaudible. I obediently went and sat in the chair. I had sat in this chair before. I hoped that I wasn’t going to have the customary experience of having a viewing tube inserted into my nose, for the third time. The specialist put on a head mirror and some surgical gloves, and then he reached for an examination tool. This tool appeared less sophisticated than the viewing tube. The tool resembled a pair of metal pliers; with thinner handles, and two hooked jaws. He inserted the contraption into my nose, with both of the metal hooks sliding into each nostril respectively. He swiftly and forcefully lifted the handles of the device upwards at an angle, to view inside my nose; examining the structure of my septum. He said that my nostril was completely blocked on the left side, due to the deviation of my septum. I already knew this. I have been unable to breathe through my left nostril for as long as I can remember. I had also had this same discussion, two times previously, in this same room, with two other former specialists. This information was in my medical notes, in the booklet that was sitting on the desk in this same room.

Then, without further explanation, I was asked to leave to room. I was instructed to go, for perhaps my fifth visit over the past year or so, to have a tympanometry test. A tympanometry test is often used to assess the function of the middle ear. The results of tympanometry are represented on a graph called a tympanogram. This is a graphic representation of the relationship between the air pressure in the ear canal and the movement of the eardrum, and the tiny bones in the air-filled middle ear space. When the eardrum is disturbed by a sound, part of the sound is absorbed and sent through the middle ear while the other part of the sound is reflected. The information derived from tympanometry provides information regarding middle ear function, especially Eustachian tube function.

The nurse who carried out the test was a nurse I was familiar with. She was friendly and jolly and seemed intent on carefully explaining everything to me. In the interest of respecting her, much appreciated, caring nature, I acted as though I was unfamiliar with the procedure. She kindly explained the process to me, through my friend; my translator. An ear probe was promptly placed, first into my hearing ear, and then into my deaf ear, to test the responses. As the probe in my hearing ear caused the air pressure in my ear canal to change, I heard some low-pitched tones. When my deaf ear was tested, it remained silent, with only the sound of tinnitus prevailing. While the pressure was changing, measurements of my eardrum’s movement were being taken and recorded. The test was over in a few minutes. When the nurse examined my results, she scrunched her face into a painful expression. She asked me if I have the constant feeling of being in an aeroplane. Yes! I have an unceasing pressure in my left ear, and though not as pronounced, in my right ear too. It is the feeling of pressure, comparable to being in an aeroplane and not being able to pop my ears. I also have the occasional sound of little bubbles similar to those in the foam made by bubble bath, or bubbles in fizzy drinks traveling to the surface, escaping into the air with a with a crackling sound. These sensations are sometimes accompanied by a sharp deep and momentary pain. Yes! This pressure is causing me constant discomfort, and is more difficult to manage than my actual hearing loss. Yes! This pressure I feel is what I’ve told every specialist about. Yes! This wonderful nurse had immediately identified this as a significant source of discomfort, and was showing empathy towards my situation. She was the first person in over a year of consultations, to not just read my results and identify a problem, but to actually show some understanding of the unpleasantness I was experiencing.

I returned to the consultation room, and showed the doctor my tympanogram. After regarding it for a moment, he told me with confidence that the reason I have the feeling of pressure in my ears is because I can’t breathe properly. This is not what I’d been told before. I had been told that there could possibly be a link between my inability to breathe effectively through my left nostril, and my ear pressure. I had believed that the pressure was a consequence of my hearing loss. The onset of the feeling of pressure had, after all, coincided exactly with the moment I lost my hearing. I told him that it had not been communicated previously to me that the issues with my nose were the certain cause of the discomfort in my ears. He repeated with vehement assurance that the pressure in my ears was a direct result of my difficulty breathing. This was something new to me.

The specialist then questioned me about my sleeping habits. I told him how I have struggled to sleep, to the best of my recollection, for most of my adult life. I told him how I find it difficult to fall asleep, due to problems breathing. I told him how my brain seems to wake me up just as the rest of my body feels like it’s going to sleep. I told him that I am only able to sleep effectively whilst lying on my left side. If I sleep on my right side; the side of my functioning airway, the nostril closes up which means I can’t breathe at all through my nose. He told me that I needed the septoplasty. This operation would straighten my septum, allowing for better airflow through my nose.

There are long term effects of a deviated septum. In my case, having a deviated septum has meant that not only have I had many sinus infections, but I also often get throat infections; as I regularly breathe through my mouth. The blocked nasal breathing due to septal deviation also has a negative effect on the Eustachian tube, which means drainage from the nose is not efficient. If what the specialist was saying was correct, having the operation could lead to better tubal drainage from my nose, and as a result this could relieve some of the pressure I am feeling in my ears.

My hope for this operation is that it will help me feel more comfortable whilst sleeping at night, as I will be able to breathe through both nostrils. After time I should start breathing through my nose more during the night, and therefore shouldn’t wake up as much; as a result of having a dry mouth, or as a response to my body warning me that I am not managing to get enough oxygen into my lungs. In consequence, I hope I will also feel more refreshed when I wake up. My most cautious hope however, is for an eventual reduction in the pressure I am feeling in my ears.

And so, after over a year of rapid changes of emotion, I am once again feeling hopeful…

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Another consultation with another specialist – Part 1: Distractions

The first thing he said to me was that I would never get my hearing back. There was no greeting. In fact he didn’t even lift up his head to look at me, as he spoke these opening words.

I was in the hospital again for a consultation with another specialist. My usual Ears Nose and Throat doctor (ENT) had gone to study in England, and so I was again preparing myself to tell my story to a stranger.

Prior to meeting this new specialist, I had carried out some hearing tests. The first test, as always, was a pure tone test, which tests the ability to hear a number of different tones (beeps), using a pair of soundproof headphones. Next was the usual bone conduction test which measures the ability to hear tones, by placing a small bone conductor behind the ear. Normally, these are the two tests I undertake before speaking to a specialist. This time however, I had been asked to carry out an additional assessment: a speech recognition test. This test is similar to the pure tone one, but instead of listening to different tones, the patient listens to words spoken at different volumes, which they are then asked to repeat. The speech reception threshold shows how well the individual hears and understands ordinary conversation. I had carried out this test before, when I had consulted with the specialist in London. That test had been conducted in English; this time however, I would be doing it in Spanish. When I completed the test in my mother tongue, I found that even if I couldn’t clearly hear the whole word, I could guess what the word was; based on the associated tones I could hear, and my knowledge of the English language. This time I was obviously at a disadvantage. I am not fluent in Spanish, and this felt more like a language test than a hearing one. The audiologist assured me that the words would only be two syllables and would be very basic.

Well, the test started off OK, with me repeating a few simple words being played into my good ear. Then things got more difficult. I found I was concentrating so hard on listening to the two syllables of each word that I either ended up missing the start of the word or the end of it. And, as asking the audiologist to replay the word wasn’t an option, I ended up just saying the one syllable that I knew I had heard. This carried on with me grimacing at every non-word I was saying. Then the audiologist turned up the volume and I was in immediate pain. I looked through the glass screen at her and pulled a distressed face. She spoke into her microphone and asked if it was too loud. I told her it was, and she said she would turn the volume down. She assured me she had done this, yet I continued in pain, with the distressed look on my face, as she continued to play more words at me. I was relieved when the test was over, and when she came into the booth where I was sitting to change the headphones over, in order to test my deaf ear. I then sat patiently whilst the test was carried out on my deaf ear; aware that the audiologist was on the other side of the screen, busy playing Spanish words into my deaf ear, yet unable to hear them. Some minutes went by, and then she played the words really loud into my deaf ear. I was again in discomfort, yet she didn’t turn down the volume. The noise was distorted, yet I was able to attempt to vocalize some of the sounds. Then the test was over, and I was asked to wait outside.

Over 3 hours later I was called in to a consultation room to speak to the new specialist. The head-teacher of the school I work in had kindly suggested my Spanish friend accompany me for this consultation, to help with translation. I had been told that this new specialist would be giving me some therapy to help me cope with my sensitivity to sound. I had also been told that this new specialist didn’t speak any English. I knew I had an adequate level of Spanish to be able to understand the main points of discussion. I would however, find it difficult to describe any sensations associated to different volume levels or types of sound.

Well, thank goodness my Spanish speaking friend was with me. The specialist mumbled his way through the entire consultation. He barely even moved his lips as he spoke! As someone with a hearing loss, it is very difficult for me to understand someone if they do not speak clearly. Even my hearing friend who speaks Spanish, had to move closer to hear what he was saying, and also asked him to repeat himself on more than one occasion. As someone with hearing loss I also find it difficult to hear speech if there is any background noise. And, a few minutes into the appointment, the distractions commenced.

We were sitting in a small square consultation room, and at the far end of the room was an open doorway which led to a corridor where staff were busily chatting and walking from room to room. In addition to the almost inaudible muffled tones being uttered by the specialist, the added distraction of the staff in the corridor further hindered my ability to follow what the specialist was saying. Then two people entered the small consultation room. One of people was a young-looking guy wearing a white lab coat. He proceeded to the sink on the right-hand side of the room. He turned the tap on, and started to do something which sounded like it involved a scrubbing brush... Chat chat chat, clomp clomp clomp, swoosh swoosh swoosh, brush brush brush… mumble mumble mumble…The brushing and the sound of water flowing rapidly into the sink, mixed together with the corridor noise, forcing the specialist’s mumbling to grow more distant. The other person who had entered the room was a female nurse, who proceeded to the left-hand side of the desk where we were sitting. She started flicking through a stack of patient’s files; pulling them out of slots of a metal trolley, and flicking some more… chat chat chat, clomp clomp clomp, swoosh swoosh swoosh, brush brush bush, flick flick flick… mumble mumble mumble… the specialist’s indistinct tones were drowning in background noise. At one point he even had a piece of paper covering his mouth, which meant that I wasn’t even able to observe any slight movement of his lips to gain some clue as to what he was saying. What if I was a lip-reader?! I imagined a page from a puzzle book; the kind where there is a line drawing where you have to circle what’s wrong with the picture.  Well, if the aim of the puzzle was to highlight the aspects of this scenario that were making it a difficult environment for communication for someone with hearing loss, I’d be circling almost everything on the page.

I watched as the specialist quickly scanned the A4 booklet of notes that had been written about me, by his predecessors. I took a breath and focused on staying patient and prepared myself for the usual inquiries that would force me to relive the difficulties the past year had brought. Predictably I was soon asked the standard questions. When did it happen? Was it sudden? Have you tried a hearing aid? He told me that my right ear was functioning well. I assume he must have discounted the results of my speech recognition test, to come to this conclusion. He told me that the most important thing was to look after my right, only-functioning ear. He advised me on my diet. Since losing my hearing I have had various doctors and specialists suggest many things that I should not be eating or doing, in order to protect my remaining hearing. This time the list included, amongst many other things; no alcohol and no caffeine. I was told to avoid using certain types of hair dye, gold, and numerous types of antibiotics. There were countless other things on the list that could prove toxic to my ear, of which I had no idea what they were. I was to avoid loud music and high noise levels. My friend explained how I work in a school. The specialist said that a school environment was OK…I often think that people don’t realize how loud a classroom, or an infant school playground can be!

The specialist had a blunt manner. He seemed to be highly knowledgeable in issues regarding the ear; having all the textbook-theory knowledge, yet none of the practice. There was no evidence of him showing any understanding of how sudden hearing loss can affect someone’s ability to understand speech, not to mention their self-confidence or other associated emotional factors. He even managed to upset me; when he asked me how long I’d been living in Spain, and he commented how my Spanish should be better after such an amount of time. Hmm, maybe after obviously being a consultant for such a long time, he should have more on an understanding how to address patients with hearing loss?!…Nevertheless, as the consultation continued, my friend and I remained collected. We asked our questions, and finally we started to form a new plan of action…

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 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 a 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 to 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 does 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 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.

A meeting with the white rabbit

I was sitting opposite her, at her desk. The tip of her nose was a smudgy black, and the area between her nose and top lip was a thick oily white, with a modest covering of black whiskers. She looked at me through her thin, black rimmed glasses. When she stood up to make me a cup of tea, I noticed a cotton wool pom-pom tail attached to her lower back…

It had been 8 months since I had lost the hearing in my left ear. It had been 8 months since I had been living with tinnitus, dizziness, a sensitivity to loud noises, and the relentless pressure in my ears. It was almost 8 months since I had last carried out a day’s work. My headteacher had asked me to come to the school to attend a meeting with her. I was nervous. I wasn’t sure what the outcome of the meeting was going to be. I couldn’t bear to be around loud noises. Returning to my position as an Early Years teacher – a teacher of 4 year old children – was not a possibility for me at this time. I wondered if there could be any other options for me; any other work in the school that I would be able to do. I wondered if, due to the amount of time I’d been sick, I would be asked to leave.

I arrived at the school on a sunny Monday morning. As I pushed open the stubborn metal gate, I was filled with apprehension and nervousness. I could hear children playing on the other side of the gate. As I walked into the small patio situated in front of the school, I was immediately struck by a magnitude of colour. The children weren’t wearing their usual dark blue uniforms or stripy blue smocks, but instead they were all dressed in fancy dress costumes. It was Book Day in school. There were children dressed as Mr Men characters, The Very hungry Caterpillar, Dr Seuss’ Thing One and Thing Two, and animals, pirates and princesses. One of my colleagues promptly came to give me an all encompassing hug. This alerted the children to look my way, and when they realised it was me, a large group of children, all of whom I had taught the previous year, ran to me and hugged me from all directions. They were chatting to me excitedly; asking me lots of questions, showing me their costumes, and screaming with excitement. My ears were hurting from the noise. I wasn’t able to focus on any of the children’s words. However, it was wonderful to see them, and to be surrounded by the energy of young children again. I stayed for a few minutes on the patio, soaking up the excitement, and receiving more hugs from children and members of staff. I had been working in this school for three years. It was a small nursery and infants school, and I had made close connections with many of the staff members, and of course, with the children. It felt so nice to be immersed again in this vibrant world. It felt so nice to absorb a little of what to me, was my former ‘normality’. I missed working as a teacher. I missed my days of creativity. I even missed the absolute exhaustion I used to feel at the end of the school day; knowing I’d applied all my energy to give my pupils the best possible start to their education I could offer.

I entered the headteachers office. She was dressed as the white rabbit from Alice In Wonderland. She stood up from behind her desk, and as she gave me a hug. I momentarily became aware of the humour in the situation. The irony that such an important meeting, one that could possibly affect my future work opportunities in this school, would be between me and the white rabbit. It was bizarre and felt somewhat surreal. This is the nature of working in an infant school! She asked how I was doing. She told me that because I was good at my job, she didn’t want to lose me. I hadn’t prepared for this kind of compliment, and the weight of it triggered my emotions. I could feel tears welling up in my eyes, but refused to release them; breathing deeply and wiping away any evidence of my weakened character. The past 8 months had been difficult, and my confidence was drained. She asked me how I thought I would cope as a teacher, in a busy classroom. I was honest with her, and told her I would find it extremely difficult. She said she didn’t want to set me up for failure. She then went on to suggest some other possible roles for me. There was a language school that was owned by the same company as my current school, where I could possibly work; teaching small groups of adults. There was also a possibility of working with older children. However, these didn’t seem like favourable options. My teaching background was firmly rooted in Early Years education, and it was with this age-range where my teaching passion lay. We discussed other options, and came to the conclusion that working with small groups of children, away from the noise of the classroom, would be a role that could offer me the best chance of success.

After over an hour of talking about my options, my headteacher told me that she could offer me a position as a teaching assistant. It would include some time in the classroom as well as time working away from the classroom; with small groups of children who needed extra support in Literacy and Maths, and in learning English. I had an interest in working with intervention groups, and in Special Needs education. I also had experience in these areas. This role would be a way of seeing how I would cope in a classroom. I wouldn’t be letting people down or feeling guilty if I had to leave the position, as I wouldn’t be responsible for a whole class. I would earn just over a third of my wage as a full time teacher, but this was an opportunity for me to discover my potential and also recognise my limitations, whilst doing so in a familiar environment.

It has been nearly 3 months since my meeting with the white rabbit. I returned to work for the month of June. It was difficult. It was an experience that proved to be challenging and demanding on my diminished confidence, and hearing. My ears were painful at the end of the day, and on returning home each day I savoured times of quietness. But I completed the month, and am proud of what I achieved. I will be returning to the school after the summer to start the new school year in my new role as a teaching assistant.

I am now enjoying my summer holidays; feeling like I earned them, and am now up to date with my story 🙂

More alternative therapy: Part 1 – skin popping included!

My consultation with the maxillofacial doctor, which by this time was 6 weeks previous, had concluded with her recommending some treatments for me to try. One of her recommendations was that I embark upon some craniofacial rehabilitation. This is a form of physiotherapy that can help temporomandibular (TMJ) (jaw joint) disorders, by using a variety of methods; understanding the relationship between the neck and shoulders, and the head and the TMJ.

This would be yet another alternative method I would try, to see if the pressure in my ear could be reduced, by addressing issues with my jaw. At this point in my story I was continuing to see my chiropractor, who was also doing jaw adjustments. I was also wearing my new night guard to help with my teeth clenching and grinding, whilst sleeping. Maybe this new therapy would complement the other things I was trying.

I had come to terms with the fact that the hearing in my left ear wasn’t going to return, and I was developing strategies to manage my life with unilateral hearing. However, I wasn’t prepared to accept that I would have to live the rest of my life with the constant discomfort of the feeling of pressure in my ears. The doctors had been unable to provide me with any medical-based relief, and so there was nothing to lose by seeking alternative help.

I arrived at the clinic on a Tuesday morning in May, and quickly found myself sitting in yet another waiting room. It was early in the day and I was the first person waiting. The clinic had a clean feel to it. There where white walls, and a light coloured wooden floor. In front of where I was sitting was a light wooden coffee table, with a white candle placed in the middle. Also on the table was a small metal tray in which sat an ornament of a Buddha, alongside some incense sticks. On the wall opposite me was a circular logo, with an outline of a head pictured sideways-on. Above the head, were the words ‘Integrative Craniofacial therapy’. To the right of me, hung a small print of one of Picasso’s paintings; adding a slight touch of lively colour to the otherwise sterile-white wall. Around the room were a variety of different sized leafy pot plants; some small, and perched on top of shelves, and some bigger and nestling into the corners of the building. The feeling of serenity was complete when the music speakers were turned on; initiating the low and warm tones of Nina Simone singing jazz, that floated around the clinic.

First I met the main specialist. I immediately recognized him from the website, and I believe it was he who had originally set up the practice. He asked lots of questions. This initial meeting was conducted at swift pace and with seemingly professional efficiency. He asked me questions about my general health, my diet, whether I was stressed, and about my sleeping patterns. He didn’t seem surprised when I told him about my sudden hearing loss. He scribbled down notes in scrawled handwriting. He felt around my neck and jaw and asked me to open and close my mouth a few times. He said I have issues with my TMJ muscle. He then took me to the room adjacent, where I met another practitioner, this time a woman.

The woman spoke in English and gave me a lot of explanation about what my treatment would consist of. She explained how first she would work on my lower back, and then gradually work upwards towards my neck and face. She began by massaging outwards from my spine. I sat in my underwear, on the edge of a massage table in front of a mirror. I watched as she worked her way up to between my shoulder blades. The therapist was very friendly and seemed to be using her time with me as an opportunity to practise her English speaking skills; which I was very happy about, as it meant that I was able to relax and forget any language-based stress. Whilst I was gazing into the mirror, focusing on nothing in particular, she told me she could see (without touching me) that there was inflammation on the left side of my jaw. I glanced up and looked at my face in the mirror. I could see the inflammation too. I had seen it in my reflection since the day I’d lost my hearing. Yet I couldn’t recall if there had been swelling there before my hearing loss.

I was then asked to lie down on my stomach, on the massage table. She started pulling at my skin around the base of my spine. As she pulled there was an occasional loud popping sound. This was a new experience that no amount of massages enjoyed and endured whilst living in Thailand could have prepared me for. It was quite a painful and uncomfortable experience, yet was also quite satisfying – like tension was being forced away from my back with every pop. The practitioner explained that she was releasing my skin from the bone.

I asked the practitioner if she’d ever seen anyone who’d suddenly lost their hearing. She said she had. She said she had seen people with all sorts of problems: problems with facial muscles, problems with senses, neck problems etc… The walls around the small massage room were decorated with posters. The posters were diagrams of the mouth and teeth. The posters showed the connection between the ears, nose and throat. The posters showed how issues with the neck can affect other parts of the body and face. Hmm, these were all familiar issues.

I then asked the practitioner more directly if she thought my jaw problems could be connected to my hearing loss. She immediately replied, “Yes”, as though it was a question that didn’t require any thinking time to answer. She then quickly added, “But obviously I don’t know what’s going on inside the ear…” When I told her that my MRI scan results had been normal, that there was no virus, that my blood tests had been normal, and that the doctors couldn’t explain my hearing loss, she said, “Well, if they don’t know, then 99 percent I think it could be connected to your jaw.” She also mentioned some other possible attributing factors including stress, serotonin levels, and hormones.

After about half an hour of massage, the woman left the room and the original guy returned…

Dentist mission part 1

I was sitting in a waiting room, waiting for an appointment to get a new night guard for my teeth. The type of mouth guard I needed was similar to the ones that boxers or rugby players wear to protect their teeth. This type of dental guard however is custom made, in order to fit individual mouths comfortably. I had been aware of grinding and clenching my teeth whilst sleeping, for at least 15 years, and had recently been waking up in the middle of the night with my teeth clenched tightly together. It was as though my subconscious was intervening and was now warning me when my teeth were engaged in this habit.

I already owned a mouth guard which I wore on my bottom teeth, and which had been made over 10 years ago, when I lived in England. I had worn this guard on and off for many years. In the past, when I went to the dentist, the only question I was ever asked about the guard was whether or not I had one. Nobody ever asked me how old it was. It had been expensive to have made, and I never thought about getting another one. It was only recently after my consultation with the Maxillofacial doctor; who seemed confounded that I had been using the same guard for over 10 years without having it adjusted, checked or replaced, that I realized perhaps I should get a new one. Of course, our faces change with age, as do or jaws and teeth.

The relationship between teeth grinding and clenching, and problems with the temporomandibular jaw joint (TMJ) causing problems with the ear are well documented. Curious that this connection was never mentioned by any of the many ear specialists I had consulted with. Typical symptoms of a TMJ disorder include ‘hearing loss, an earache, tinnitus, a sense of ear fullness, and vertigo’. Hmm I had experienced all of these, and continued to do so with all except the vertigo. I had even read stories of people who had suffered a hearing loss, and then after wearing a night guard for some months, their hearing had gradually returned. I was not hoping for this kind of miracle, but I did have some optimism that a new night guard could help reduce some of the pressure I was feeling in my ears and my head; this being the most difficult of my symptoms to tolerate.

The dentist surgery was in an old style apartment block. The waiting room felt as though it was probably once someone’s living room, many years ago. The room was square and dark padded sofa chairs lined three of the walls. There were no windows, and the walls were a plain dismal-cream colour. Around the bottom of the walls was dark brown skirting. There was a dark coffee table, situated in the space made between the chairs, with Spanish magazines arranged on top, in three piles. It was simply decorated, with two large framed pictures, one on each chair-lined wall. In the far corner, situated up high, near the entrance was a small box TV playing a Spanish soap opera with subtitles and low volume. As well as the low rumble from the TV, jingly-sounding elevator style music attempted to liven up the atmosphere. The surgery had looked so clean and white on the photos on the website. This definitely did not resemble the sterile and shiny images that had been advertised.

The receptionist called me to her office to speak with her. She had a confident, sociable and easy going attitude. I stumbled my way through the general health questions and she corrected my Spanish a few times, each time smiling with friendliness. She was the kind of person who made me feel like she immediately liked me. Perhaps it was the child-like Spanish I was speaking to her. For this appointment I hadn’t prepared any Spanish phrases or helpful vocabulary. I had become accustomed to meeting new specialists, doctors and receptionists, and the taking of basic details didn’t feel too scary anymore. I then went to sit back in the waiting room.

Shortly I was greeted by the guy with whom I had spoken on the phone, who had given me an appointment within 45 minutes of me phoning. He was younger than me, and spoke to me in a mixture of Spanish and American-sounding English, as he lead me to the dentists room. When I entered, I was met by a small old man, who was wearing a medical face mask, dentist overalls, glasses with magnifying mirrors attached, and whose bald head was covered in age spots. He muffled a greeting through his mask, and I wondered what he looked like under the medical disguise. He resembled a little mole, as he shuffled calmly around the room. He asked me why I was there and whether I had had a ‘ferula’ before. Ferula is the Spanish word for mouth guard – this was my new medical Spanish word of the day. He asked me to perform some jaw movements as he felt around my head and under my jawline. He also examined my teeth. He mumbled constantly into his face mask, directing his speech towards his companion. I could only hear and understand a little of what he was saying. The younger dental technician spoke to me in his broken American English and explained that they would need to do an X-ray to make sure the night guard would fit properly, and then they would be able to do the molds of my teeth. After that, the dentist left the room, and that was the last time I saw him during this appointment. The dental technician took me to a room to have the X-ray. Later he filled my mouth with pink putty to form the molds, chatting happily at me whilst my mouth was unable to move. I would return the following week…

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.