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…

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.