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…

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.

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.

Seeking alternative help – Trying to solve the mystery: Part 2

…Just under 7 weeks after losing my hearing, I went to consult with a chiropractor. I had never been to a chiropractor before, and wanted to know his opinion about my situation. My boyfriend and I arrived for my initial consultation, and we were greeted with a handshake from a very professional-looking English guy. We immediately felt at ease. He had a calm and patient manner, and listened to my story; asking relevant questions throughout. He was so refreshing to talk to and filled us with hope and optimism. None of the hospital specialists had shown any support of my theory that an issue with my neck or jaw could have contributed to my sudden hearing loss.

The chiropractor showed us a poster similar to the one below:

Note that the vertebrae C1 – C4 all have connections to the ear and hence to hearing. The chiropractor told us that it was completely plausible that a problem with my neck could be affecting my hearing; perhaps due to a restriction of blood flow or a problem affecting the auditory nerve. He obviously was interested in my case, and also showed great optimism, and pride in his work. He didn’t give us false hope. He said he could definitely help me. He felt my whole neck was ‘blocked’, and said he could help with this, and this could possibly in turn help me regain some hearing.

I continued to see the chiropractor. Each time he made similar adjustments to my neck and back. He helped me understand so much about the connections in the body, the nervous system, and how to maintain good spinal health. During one visit, he also told me a little about the history of chiropractic, something that I later looked up at home:

The history of chiropractic began in 1895 when Daniel David Palmer of Iowa performed the first chiropractic adjustment on a partially deaf janitor, Harvey Lillard. While Lillard was working without his shirt on in Palmers office, Lillard bent over to empty the trash can. Palmer noticed that Lillard had a vertebra out of position. He asked Lillard what happened, and Lillard replied, “I moved the wrong way, and I heard a ‘pop’ in my back, and that’s when I lost my hearing.” Palmer, who was also involved in many other natural healing philosophies, had Lillard lie face down on the floor and proceeded with the adjustment. The next day, Lillard told Palmer, “I can hear that rackets on the streets.” This experience led Palmer to open a school of chiropractic two years later. (Wikepedia)

So there is a direct link between chiropractic adjustments and the restoration of hearing, after hearing loss has been experienced!

I continue to see my chiropractor every few weeks now, and my neck is feeling much better. Although there has been no miracle cure, I am happy to know that I have taken the time to sort out a problem that I have lived with for so long, and will continue to practise good spinal health. I also continue to refuse to lose all hope in one day possibly experiencing some improvement in my condition. I’m not saying that I believe I will have a complete recovery, more that our bodies take time to heal and maybe one day things could improve for me or become more comfortable.

I also went to see an osteopath. He was an interesting man, who was obviously passionate about his work, and keen to continue to learn new things about the body. He also specialized in Chinese medicine. He took another different outlook on possible reasons for my hearing loss. It was my first time consulting with an osteopath. He asked me lots of general health questions about my digestion, whether I had bladder infections, and how well I sleep. He placed his hands on different parts of my body and said that there was a blocked channel of blood flow to my head. He also said that there was a problem with the membrane in my deaf ear. He placed little stickers on different parts of my body; some on my feet; white quartz stickers on my jaw next to my ear, which were positioned on acupuncture points; and mustard seeds on pressure points on my ear – relating to the ear, nervous system and jaw. I had to press the mustard seeds firmly throughout the day. During future visits he also explained that he could feel my deaf ear was ‘impacted with pressure’. He did lots of things to help with blood flow to the ear; applying light pressure in different areas. He also talked about how the kidney is directly associated with hearing in Chinese medicine. The osteopath was obviously a very divergent thinker. Nevertheless, the little white stickers that he placed next to my ears did provide some relief from the ear pressure I experience. I also continue to stay in touch with him, and see him every month or so. He finds my case interesting. He explained to me that he can easily fix something like tennis elbow, but my case was something he hadn’t seen before and it intrigued him. He enjoyed the challenge of exploring his manuals for possible methods of help, and then putting these strategies into practise.  He also filled me with hope and said that if the doctors can’t find the answer, then maybe he can, or maybe a physiotherapist, or someone else. He urged me to never stop seeking help.

I continue to feel that whilst the hospital specialists still have no answer as to a reason for my loss of hearing, that it could be related to something skeletal or other ongoing issues with my body. Maybe just one factor or, possibly more likely, a few issues working together to have caused my hearing loss.