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.

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Author: myhearinglossstory

Hi, My name is Carly. I am 35 years old and I am currently living in Spain. I am originally from a small seaside town in Yorkshire called Bridlington, and have also lived in China and Thailand. I am an Early Years primary school teacher, and have been teaching for nearly 12 years. I love walking in the countryside, getting lost in Madrid, going out for breakfast, taking photos, listening to music, storytelling podcasts, baking, running, drinking wine, and eating spicy food. This year I experienced sudden sensorineural hearing loss in my left ear. I have started this blog as a way to inform my friends and family about my progress, for anyone else who is going through a similar experience as me, or for anybody who is interested in learning about this type of hearing loss, and the way it can affect everyday life.

20 thoughts on “A consultation with the new specialist”

  1. Great post!

    The BAER, or ABR test is what they use on newborns to detect hearing. It measures the entire auditory pathway.

    I agree with the doctor that it sound a bit like middle ear dysfunction and fluid build up. My ears are stuffy from allergies right now, so I understand a little what you are going through, but not quite as in depth.

    Did they say anything about it just being conductive (bones not properly conducting sound) or sensorineural, where there’s actual damage to the cochlea or auditory nerve?

    Liked by 1 person

  2. So glad you found a doctor who understands and seems to have made appropriate referrals. In the US we have a law called the Americans with Disabilities Act which requires employers to make reasonable accommodations for persons with disabilities. I’m not sure if any of this would be possible for you but where I live some possibilities I would look at would be – Teaching or tutoring in a small group setting, perhaps with children who require extra help or teaching older students in a classroom where students are expected to speak one at a time. In this case I would not reveal my hearing loss to students, as older students may seek opportunities to take advantage of it.
    When I first lost my hearing I was doing presentations in classrooms of high school students. There was usually a teacher or teacher aide in the class as well. My presentations were usually me giving information/instruction or group discussion with only one person speaking at a time. I was usually able to position myself so that my “good’ ear was toward the person speaking and I was able to cope quite well. You may also want to learn to read lips. I have not done this but I have known some deaf people who were quite good at it.
    It is true, you may never know what caused this problem and it may never be corrected, but you can and will learn to Live with it.

    Liked by 1 person

    1. Hello Ruth, and thank you so much for your reply. I am going to have a look to see if there are any similar disability laws here in Spain. I sometimes feel like I have the worst job for having unilateral hearing. Working with 4 year olds means that I need to be able to hear in background noise and to know where sounds have come from. I hope to try to go back to work soon, to see how I cope. My passion is in Early Years education, and I really wouldn’t want to teach older children or adults….Maybe there is a job out there working with small groups of children. Maybe this is an opportunity to work with special needs children or children with English as a second language, to teach them in focused groups….time will tell…It’s good to read such positive comments from you 🙂 Thank you. Carly

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  3. It’s interesting that in Chinese medicine, says that tinnitus is due to the weakened kidney. so your specialist said the kidney regulate the fluid that affects the hearing makes sense to me. Last night we watch a video about tinnitus, because my husband has light tinnitus. The presenter shows a way to reduce tinnitus: hold both earlobes with fingers and pulled them outward, while doing it, open the mouth wide for 10 counts, then close the mouth, and stick out the lower jaw for 10 counts, repeat 10 times. Another exercise is to reach with both hands to the back of the ridge at the bottom of the skull that align with the ears, the tall fingertips almost touching, then press the ridge with two tall fingers while using the index fingers to rub the tall (middle) fingers downwards, repeat in 20? time. So in this exercise, it has something to do with the jaw. His theory is to clear the mucus in the sinuses. My husband’s tinnitus was gone right away. The demonstrator said if it works for you right away, then it works. If it doesn’t, the problem would be something else. Your specialist pointed out the kidney, and the jaw. Hopefully he follows this path and find out if these are your issues.

    Liked by 1 person

    1. Hello Miriam. How interesting. I really do think that the jaw and neck can contribute to many different problems. Wonderful that your husbands tinnitus has gone. I hope it doesn’t come back. I have tried the exercises you said and my deaf ear felt a bit more relaxed, but the tinnitus is still there. Thank you for commenting Miriam. Take care. Carly

      Liked by 1 person

      1. You’re welcome. I have tinnitus on my left ear, so it didn’t work right away. I massage the skull part align with ears, net day the tinnitus is softer. But this morning came back very loud. I have constant sinus problem. That may contribute to the fluid in my head! Hope you can get to the bottom of the problem. Miriam

        Liked by 1 person

  4. I am happy reading this post. There’s a lot of positive sides and I believe that you are in better hands. This new doctor, not only is he empathetic, but he seems equally thorough. Just keep keeping positive energy around you though I know it must be hard on many days. Blessed be.

    Liked by 1 person

    1. Thanks so much Jacqueline. I am trying to stay positive! Yes, I am happy with this specialist, and it was great to consult with someone who seemed to really want to help me, and also who seemed to have some understanding of what I was going through. I hope you are well. Take care. Carly

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  5. I’m glad that you had a doctor who felt like they were listening to everything that you were experiencing and going through and was well educated in other possibilities as to the root cause (kidneys, jaw).
    There is nothing more frustrating than feeling like you aren’t being listened to at a medical office. Sending positive energy your way. 🙂

    Liked by 1 person

    1. Hello and thank you for the comment. Yes, it was great to talk with someone who seemed to really listen, and think about other issues that could have caused/affected my hearing loss. Thank you for the positive energy too! 🙂 Take care. Carly

      Liked by 1 person

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