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 into 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 with 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 the 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 on 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 of 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…

Underground Scanning

Back to my story…

Two weeks after my consultation with the Maxillofacial doctor, I went for a bone scintigraphy scan. The scan was to be performed in the basement of the hospital. I walked down some red painted steps into a concealed underground hospital corridor. It was a world of large metal pipes and echoes. Since the scan involved radiation, I guess it was to be performed in an isolated area to protect other patients. The first step of the scanning procedure was an injection of radioactive dye. I was then asked to wait in a room with around twenty other people. The room was square and painted a tired off-white colour. At the entrance to the room were two toilets. There were no posters on the walls. The perimeters of the walls were lined with plastic chairs. In one corner was a table covered with a plastic table cloth and large bottles of water and plastic cups. I was told to drink at least 5 cups of water, and to use the toilet as much as I needed to. I had to wait for the dye to travel in my bloodstream around my body. I watched as people’s names were called. They were asked to go to the toilet, and then they would go out of the door of the waiting room for their scans. As time went on I watched as people started to become agitated with the long wait. One old man started to pace back and forth, leaning heavily on his walking stick. Another man positioned himself near the door, making himself very visible; seemingly hopeful to be the next person called. I waited for 5 hours.

The scan took about 20 minutes. The machine was white and resembled an MRI scanner. At one end of the machine, there was a ring doughnut-shaped compartment. Positioned at the entrance to the centre of the doughnut hole, was a long examination table that had a groove that ran through the middle of it. I was asked to lie down on the table. My body slotted into the groove. My head was supported with a pillow, and another pillow was placed under my knees. I was then wrapped up in a blanket, with my arms hugging my body, and a belt was fastened around me. I imagined that my blanket-swaddled body resembled a snug-fitting battery in a remote control battery compartment. The technologist positioned another part of the machine around my head, and then she went into a small room behind a glass screen and turned on the machine. The robotic arms of the machine rotated slowly around my head, making loud clicking sounds. Next, the battery compartment started to move like a conveyor belt towards the entrance to the doughnut. I was transported inside the doughnut. I looked up and saw the top of the machine was only a few inches from my head. I focused my stare on a small area of the machine above my head, so as not to move, and to prevent my thoughts from drifting to the contemplation of my confinement. More loud clicks followed, and more images were taken.

About a week after I had the scan, I met again with the new ENT (Ears Nose and Throat) specialist. He said he was happy to see me looking well, and asked if I was back at work yet. In my previous consultation, he had been concerned about my well-being. I told him I hadn’t yet returned to work. He said I would have to try soon, but he was worried about me being in an environment with lots of noise, as he knew I’d find it difficult.

Then he changed the subject of discussion. He asked about my breathing; in particular, whether I had any difficulties due to my deviated septum. He asked whether I breathe through my nose or my mouth. I was asked to sit in a big black chair opposite his desk. He then performed a Fiberoptic Nasopharyngoscopy. This is an imaging technique, using a long thin black flexible wire with a light on the end, that is inserted into the nose. It can allow visualization of the nasal cavity, septum, and other structures. The specialist slowly fed the viewing tube down my good (right) nostril until I could feel it brushing past my throat. My eyes started to water involuntarily. I remained in rigid stillness. This was a procedure that one of the other specialists had done before, so I knew the level and type of discomfort I would experience. Then he removed the tube and started to insert it into my deviated (left) nostril. This I had never had done before. He got as far as the top of my nostril; the furthest area you can touch with your finger. Then he stopped. He said the nostril was completely blocked due to the deviation of my septum. But then, to my bewilderment, he continued to feed the tube into my nose; forcing it further down towards my throat. I was in extreme discomfort. My eyes continued to produce uncontrollable tears that streamed down my face. He carefully removed the tube. My body was shaking. The specialist told me that my left nostril was completely blocked. He said that I couldn’t breathe through this nostril – this I was obviously something I was aware of.

I then sat down again at his desk, more relaxed now, and he asked if I wanted to have an operation to correct my septum; that would help me breathe better. He said I would probably need the operation in the future anyway. I said I’d like to wait for the results of the jaw scan first, and then if everyone was OK with that, then I’d prefer to have the operation sooner rather than later. I thought it would be better to have an operation in the present, rather than in old age. Also, I’d like to be able to breathe better, especially when I’m trying to sleep. He said he thought this was a good plan. He said that correcting my breathing should help to make me feel more comfortable, and could possibly help with some of the stuffiness I was feeling in the left side of my head, since my hearing loss. I would meet him again in a month.

Two weeks after the bone scintigraphy I was back at the hospital for a consultation with a maxillofacial (jaw) specialist to get my results of the scan. I was going to find out whether I had Mandibular Condylar Hyperplasia (a rare bone disease that causes asymmetry of the face amongst other things). My boyfriend accompanied me for this appointment, as I was feeling nervous. The specialist explained that the results of the scan showed that I didn’t have the rare bone disease…Breathe…She said that it did, however, show deviation of my jaw. I was then led to the adjacent room where I sat in a dentist-style chair and she examined my jaw; asking me to open and close my mouth. She told me there was a problem with my jaw muscle. My boyfriend asked whether my problems with my ear could be related to my jaw issues. She answered discernibly carefully, saying that ‘the ear pressure could be associated with the jaw’. She wrote down recommendations of treatment for my jaw problems on a piece of paper for me:

  1. Go to a dentist and have a new nightguard made. This would protect my teeth and jaw muscles from night-time clenching.
  2. Try taking Robaxisal (a muscle relaxant) for 5-10 day cycles. The specialist felt my jaw was probably in spasm. This medicine could help release some of the tension.
  3. Seek treatment from a specialist in craniofacial rehabilitation  – this is a type of physiotherapy for the jaw.

…Next stop the dentist…

A Consultation With the New Specialist

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

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

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

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

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

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

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

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

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

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

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