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…

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 blood stream 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 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 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 night guard 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…

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’ 🙂