A Second Opinion (and lots of medical terminology)

It was early in the new year, and my boyfriend and I had travelled to London for a second opinion about my condition. We arrived at the Ears Nose and Throat clinic and were asked to complete a basic information form and to wait in the waiting room. The waiting room was enormous. There were plush sofas around the perimeter and an elaborately decorated Christmas tree that dominated one side of the room. At the end of the room on the left, was a drinks machine that served all types of teas and coffees; all free of charge. We had done our research to find a specialist with lots of experience and with expertise in some of the issues I had been having. We were hoping to gain some more information and some understanding regarding my hearing loss.

When we first met the specialist, my immediate thought was that he looked older than the photo on the clinic’s web-page. He was smartly dressed; wearing a dark suit jacket, white shirt and a tie. His hair was dark with a generous scattering of flicks of silvery grey; additions to his jet black hair that had not been captured in his professional photo. As we entered the consultation room, he greeted us by shaking our hands. He dropped his pen as he walked towards his desk, and stooped down to pick it up. He had the slightly awkward air of a genius. He immediately starting asking questions and scribbling down information on his notepad. He was eager to see some previous medical notes and grabbed at what I had brought. He continued to scribble down information. Whilst writing, he kept looking up at my face and commented more than once telling me that he thought I was very pale. He had the nature of an accomplished professional, who seemed to be trying to find an answer to my problem, at an accelerating pace.

He started with some unusual tests. He asked me to stand up and I accompanied him to the corner of the room. He commented on my size saying, ‘there wasn’t much of me’. I was asked to walk in a straight line; stand still and balance; and to close my eye, put my hands together in front of me and march on the spot. When he asked me to stop marching, I opened my eyes and found that I was no longer looking at the same part of the wall as when I had started marching; I had rotated about 45 degrees. My boyfriend found this amusing. This test showed that I was somewhat off-balance. He also asked me to sit down and look him in the eyes, as he flung me from side to side. He asked me to lie down on a chair in a small room that was attached to the main consultation room, and again I had to look at the bridge of his nose as he flung me from side to side. This left me quite dizzy, and when he let go of me I swayed slightly to the left. Next, I went to have some hearing tests. These were the usual tests that I had done so many times, and also tests of the middle ear, including a tympanometry and Eustachian tube function test.

After a short wait, we went back into the consultation room. The doctor told me directly, that I had lost 90 per cent of the hearing in my left ear. He told me that there was also a small hearing loss in my right ear. There was also evidence of significant inefficient Eustachian tubal function in both ears; marked on the right side.  I had never been told so clearly the extent of my hearing loss, although I was very aware that it was severe. Nobody had told me that I also had a hearing loss in my right ear, and this came as a shock to me. He said that as the hearing loss in my left ear was so severe, it would be unlikely that a hearing aid would help me. This was disheartening. The specialists in Spain had given me some hope regarding some kind of aid. I appreciated this specialist’s candidness, even if it was difficult to receive this information. He then commented again about the paleness of my skin. He recommended that I get my Vitamin D levels checked, along with some other blood tests. I said ‘yes’ to all of his suggestions. He also suggested that I carry out a speech discrimination test of my (good) right ear, to see how well I understand speech.

I had my blood taken. Soon after, I was sitting back in the hearing test room, listening to an audio of someone saying words at different volumes. All I had to do what say what I could hear. It reminded me of a test that teachers might give to young children or to children who are learning English as a second language. I found this test OK, until the quiet level, where I ended up saying word endings or just a single letter-sound that I could distinguish in the words. Everything happened at such a fast pace.

Then the specialist told me that he recommended me to have an Electrocochleography (ECoG) test of my (good) right ear. This test measures the electrical potentials generated in the cochlea—a part of the inner ear—in response to sound stimulation. He wanted to see if the test would show any evidence for the reason for the small loss of hearing I had in this ear. He stressed the importance of taking care of my right ear – my only hearing ear. So he squeezed anaesthetic cream into my ear and we went downstairs to the waiting room for about half an hour while my ear became numb. Yet again, I had electrode pads stuck to my head. He rubbed my forehead harshly with the sandpaper and was surprised at the sensitivity of my skin. I then lay back on the chair and I was attached by the electrode pads to the computer. An electrode was also fed deep into my good ear. Yet again I had the same feeling as when I had the steroid injections: the scratchy discomfort, deep in my ear and in the back of my throat. Yet again, a series of clicks were played into my ear.

The specialist explained the results of this test. He told me I had a form of a condition called endolymphatic hydrops in my (good) right ear. Endolymphatic hydrops (also known as Cochlear hydrops) is thought to be an early form of Ménière’s disease. Basically, it is a problem with the fluid in the inner ear. This diagnosis explained the pressure and feeling of fullness in my ears; the tinnitus; the hearing loss; and dizziness I had been experiencing. The specialist thought it was likely that the hydrops was also the underlying pathology affecting my left ear six years ago, when I had begun to experience tinnitus that had lasted three years. He felt I had probably had Cochlear hydrops in my left ear all these years, and it had subsequently resulted in my sudden sensorineural hearing loss.

After five hours of tests and consultations, we had a lot more information and a bit of a plan. I was to wait for the blood test results. I was going to take some more strong antiviral medication for 5 days, in case of the hearing loss being a result of a virus. After completing the anti-viral medication I was then to start inner ear vasodilator treatment by taking a medicine called Serc 16mg, for 4 weeks, to see if this had any effect on reducing the pressure in my ears.

 

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Frustration

The next few weeks after leaving the hospital, blended into months. I finished taking the corticosteroids and I had 4 injections of steroids into my ear, each a week apart. Yet there was still no improvement in my condition.

Friends and family were keen to ask me how I was feeling. They saw that I was out of hospital and assumed that everything was OK. But it wasn’t. I was struggling through every day with deafness and other related issues: sensitivity to noise, light-headedness, tinnitus and the ever-present pressure in my ear and head. I almost felt like I was letting people down; telling them that I was not feeling any better. I looked like my usual self but was feeling awful. There was no visual evidence of the discomfort and frustration I was feeling. My problem was completely invisible. If I had a visible scar, maybe people would be able to empathize with my situation a little easier. I wanted to tell them something positive, and I didn’t want to upset anyone, by responding honestly. I didn’t feel any better. Nothing had changed since the day in the auditorium when this all began.

Everyone seemed to have a story about an ear problem. There were stories about ear infections and tinnitus, and about ears feeling clogged when flying. Many people also turned into specialists; asking me if I had recently been swimming or if I had been on an aeroplane? Did the hospital specialists check for ear wax? People didn’t really know what to say to me. I know that they wanted to sound positive, helpful, sympathetic…I did appreciate their support. People just wanted to show they were thinking of me. I would have done the same if one of my friends or family were in my position. I would have wanted to help solve the mystery and for everything to be better. I didn’t want to sound negative, but I didn’t want to lie to people. Sometimes the truth is difficult to share, and it can also be difficult for others to hear; especially when they have feelings invested in the person sharing the news.

I couldn’t go to work. Being an Early Years teacher demands having energy; being able to tolerate high levels of noise, being able to go up and down stairs without feeling lightheaded, being able to hear in background noise, being able to sing and dance without feeling dizzy. The children in my class were only 4 years old. They needed a teacher who could give them the care and attention they deserved. I missed being in a classroom. I only briefly met my new class, who I instantly loved, and who I felt like I’d abandoned. It was so frustrating. I could walk and talk and breathe and see. I looked the same. But to be able to do my job properly I needed to feel better.

I was having meetings every two weeks with my doctor to inform her of any updates. She also seemed to be getting frustrated with the absence of any change in my situation. Every time I met with her I would tell her that I felt the same. One time she explained to me that it was difficult for her also. Usually, she can give her patients some form of hope. Usually, she can give her patients a diagnosis, or prescribe some medication, and then with time, symptoms will improve. Usually, people show some form of recovery and this gives them hope. However, in my case, there had been no change in 10, 11, 12 weeks, and she knew it was difficult for me. She told me to take comfort in the knowledge that my hearing loss wasn’t a result of a more sinister problem, such as stroke or a tumour.

There was still hope. 12 weeks after the day of my sudden hearing loss, I went to see a specialist at the hospital. He told me that sometimes hearing can come back spontaneously within the first 6 months after the occurrence of hearing loss. I was told to wait and see if my hearing would improve naturally. I would go back to see the specialist in 3 months, and if there were no changes in my condition, they said a hearing aid might help me.

Time to Go Home

It was Friday and what I was hoping would be my last day in the hospital. My roommate had also been told that she may be able to go home on this day, and when we awoke that morning we greeted each other with optimistic smiles and crossed our fingers.

During my week in the new room, friends came and visited me nearly every day; visitors who all came with stories and who were all bearing gifts. One day, my friend who was heavily pregnant at the time, came to visit. She shuffled radiantly into my room, carrying an enormous and beautiful tropical-looking plant. She is only a small lady, and I could barely see her behind the long green leaves, and the red cellophane wrap which surrounded the plant. She made me giggle with stories about her pregnancy. She was only a couple of weeks away from her due date, and she told me how she felt like her hands and feet were so swollen that they resembled pig’s trotters! She also spoke about the various methods she had been trying in order to go into labour, and how she was going to start drinking some special herbal tea that she hoped would lead to a successful result.  After chatting for a long time, we said goodbye; both wishing the other well with the new challenges life was going to bring. Another friend, who I have worked closely with for around 2 years, came to see me with her husband. This friend is much taller than me, and she gives the best hugs. When she entered the room, she enveloped me in her comforting embrace. She lives outside of the city, and she brought me figs from her garden and told me all about what had been going on at the school I work at. On Thursday evening, two other colleagues came to visit; one Italian and the other Spanish. They brought me a big card with drawings from all the children in my class, and it made me feel sad to not be able to be there with them. Again these friends told me about more news from my school, and updated me on how the children in my class were doing.

Whilst in hospital I had been desperately looking forward to normal everyday life. My boyfriend and I had talked about what I would do when I got home: take a long shower, put on clean pyjamas, eat spaghetti, go for a walk in the sunshine, watch a film together, have a cup of tea, eat Marmite on toast, sleep in my own bed… The normal seemed so exotic to me now!

My roommate showered promptly that morning. Her doctor visited the room early and I could hear him making preparations for her departure. I felt so happy for her. After the doctor had gone, she went to our cupboard and took out some clothes. Shortly she emerged from our bathroom, in a fitted flowery dress, and looking revitalized. I had to wait to be disconnected from the IV machine, and then I went to have a consultation with a specialist. It was the same specialist I had seen on Monday. There had been no improvement in my situation. I still couldn’t hear in my left ear, and I was also finding loud noises uncomfortable, and was experiencing tinnitus and fullness of pressure in my ear. I was told that I would need to take Prednisone (a type of corticosteroid) for four weeks, in decreasing doses each week. I would also continue with the intratympanic steroid treatment of having injections in my ear, every Tuesday for three more weeks, and I would need to make an appointment for an MRI scan. I was still hopeful that the medicine would start to work in tablet form, and the thought of being able to properly relax and rest in my own home also made me optimistic for a recovery. When I got back to the room, I quickly showered and put on the grey dress that I had worn a week ago when I was admitted. It felt great to be wearing normal clothes. Soon after, I was again attached to the IV medication and I waited, sitting on my bed, for my paperwork to arrive and to indicate my time to go home. I waited for a few hours. I said goodbye to my roommate and we gave each other a hug and wished each other a quick recovery.  It wasn’t too long before I was walking to a taxi, holding on to my boyfriend with relief. It seemed so bright outside. Very soon I was home.

Two weeks later it was the day of my MRI appointment and I received a message from my friend. She wrote that today we would both be in hospital. Beneath her message was a photo of my friend with a joyful smile, in a hospital gown, waiting for her baby to arrive.

Injections and a Bit of Love

The next morning, after seeing another specialist, I had a visit from the doctor who I had initially seen when I was first admitted to hospital, 4 days ago. She told me that there was another treatment called Intratympanic Steroid Treatment which would involve injecting steroids into my ear, once a week for four weeks. I told her that I was willing to try anything, and very soon I was lying on my bed as she tipped drops of anaesthetic into my ear. She went away, after telling me to lie still and let the anaesthetic numb my eardrum. After about half an hour the doctor came back and took me to a room just down the corridor. I was asked to lie down on a cushioned bench and to stay very still. I couldn’t see what was happening, but the doctor talked me through her actions. First, she used a little vacuum-like tube to suck the anaesthetic drops out of my ear. Then I felt a needle pierce my eardrum and travel through my ear, to what felt like deep inside my head. I could feel the needle somewhere between the bone of my jaw and side of my throat and was experiencing a scratchy pain in this place. I was desperately trying to stay still. My eyes were watering with nervousness and discomfort. After the steroids had been injected, I then continued to lie in the same position for about another half an hour to allow the steroids to infuse into my inner ear. I was so tired and lying there on the doctor’s bench in my hospital gown, I felt extremely vulnerable. I closed my eyes.

When I got back to my room, I was given a handful of cotton wool to soak up the mixture of liquid and blood that had started to drip out of my ear. Whilst feeling sorry for myself, and gently dabbing my ear, my boyfriend entered the room.

When I was in hospital my boyfriend was always by my side. Every day he would appear in the hospital room doorway with a smile. He’d bring pastries for breakfast, which we’d enjoy together in the mornings. When I was fed up of the cold milky hospital coffee, he brought me peppermint tea in a takeaway cup from a café outside the hospital. Every day he asked me for a list of things he could bring me from home that would make me feel more comfortable. He’d sit by my bedside doing work on his laptop while I slept. He would hug me tightly when I was upset or scared, and would always manage to calm me with positive words. One day, when the intravenous was uncomfortable, he washed my hair for me – I joked with him, that it was the most intimate I’d ever been with anyone! 

One day I was desperate for some fresh air, and my boyfriend and I decided to escape for a bit. I put my denim jacket over my shoulders and put my plimsolls on. Dragging my IV stand with two swinging glass bottles, we scurried to the lift. Once on the ground floor, my boyfriend carried my IV stand down the ramp to some exit doors, with me following behind. When we got outside we sat on the wall where the hospital staff usually gathered on their smoking breaks. There was a slight chill in the air as summer was moving into autumn; though the sky was a lively blue. I was longing to go home.

Before my sudden hearing loss happened, I would often rush through my days and routines, and everyday life would pass by, without time to pause or appreciate it. It was when I was in hospital I had time to reflect. I had moments of intense emotion, where I felt so thankful and fortunate for the love and care my boyfriend was showing me. I could see he was scared, and that he needed someone to talk to as well. I know it was hard for him, especially going back to an empty apartment with a mind full of worries and questions.