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!

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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.