A second opinion (and lots of medical terminology)

It was early in the new year, and my boyfriend and I had traveled to London for a second opinion about my condition. We arrived at the Ears Nose and Throat clinic, and were asked to complete a basic information form and to wait in the waiting room. The waiting room was enormous. There were plush sofas around the perimeter, and an elaborately decorated Christmas tree that dominated one side of the room. At the end of the room on the left, was a drinks machine that served all types of teas and coffees; all free of charge. We had done our research to find a specialist with lots of experience and with expertise in some of the issues I had been having. We were hoping to gain some more information and some understanding regarding my hearing loss.

When we first met the specialist, my immediate thought was that he looked older than the photo on the clinic’s web-page. He was smartly dressed; wearing a dark suit jacket, white shirt and a tie. His hair was dark with a generous scattering of flicks of silvery grey; additions to his jet black hair that had not been captured in his professional photo. As we entered the consultation room, he greeted us by shaking our hands. He dropped his pen as he walked towards his desk, and stooped down to pick it up. He had the slightly awkward air of a genius. He immediately starting asking questions and scribbling down information on his notepad. He was eager to see some previous medical notes, and grabbed at what I had brought. He continued to scribble down information. Whilst writing, he kept looking up at my face, and commented more than once telling me that he thought I was very pale. He had the nature of an accomplished professional, who seemed to be trying to find an answer to my problem, at an accelerating pace.

He started with some unusual tests. He asked me to stand up and I accompanied him to the corner of the room. He commented on my size saying, ‘there wasn’t much of me’. I was asked to walk in a straight line; stand still and balance; and to close my eye, put my hands together in front of me and march on the spot. When he asked me to stop marching, I opened my eyes and found that I was no longer looking at the same part of the wall as when I had started marching; I had rotated about 45 degrees. My boyfriend found this amusing. This test showed that I was somewhat off-balance. He also asked me to sit down and look him in the eyes, as he flung me from side to side. He asked me to lie down on a chair in a small room that was attached to the main consultation room, and again I had to look at the bridge of his nose as he flung me from side to side. This left me quite dizzy, and when he let go of me I swayed slightly to the left. Next I went to have some hearing tests. These were the usual tests that I had done so many times, and also tests of the middle ear, including a tympanometry and Eustachian tube function test.

After a short wait, we went back into the consultation room. The doctor told me directly, that I had lost 90 percent of the hearing in my left ear. He told me that there was also a small hearing loss in my right ear. There was also evidence of significant inefficient Eustachian tubal function in both ears; marked on the right side.  I had never been told so clearly the extent of my hearing loss, although I was very aware that it was severe. Nobody had told me that I also had a hearing loss in my right ear, and this came as a shock to me. He said that as the hearing loss in my left ear was so severe, it would be unlikely that a hearing aid would help me. This was disheartening. The specialists in Spain had given me some hope regarding some kind of aid. I appreciated this specialist’s candidness, even if it was difficult to receive this information. He then commented again about the paleness of my skin. He recommended that I get my Vitamin D levels checked, along with some other blood tests. I said ‘yes’ to all of his suggestions. He also suggested that I carry out a speech discrimination test of my (good) right ear, to see how well I understand speech.

I had my blood taken. Soon after, I was sitting back in the hearing test room, listening to an audio of someone saying words at different volumes. All I had to do what say what I could hear. It reminded me of a test teachers might give to young children or to children who are learning English as a second language. I found this test OK, until the quiet level, where I ended up saying word endings or just a single letter-sound that I could distinguish in the words. Everything happened at such a fast pace.

Then the specialist told me that he recommended me to have an Electrocochleography (ECoG) test of my (good) right ear. This test measures the electrical potentials generated in the cochlea—a part of the inner ear—in response to sound stimulation. He wanted to see if the test would show any evidence for the reason of the small loss of hearing I had in this ear. He stressed the importance of taking care of my right ear – my only hearing ear. So he squeezed anesthetic cream into my ear and we went downstairs to the waiting room for about half an hour while my ear became numb. Yet again, I had electrode pads stuck to my head. He rubbed my forehead harshly with the sandpaper, and was surprised at the sensitivity of my skin. I then lay back on the chair and I was attached by the electrode pads to the computer. An electrode was also fed deep into my good ear. Yet again I had the same feeling as when I had the steroid injections: the scratchy discomfort, deep in my ear and in the back of my throat. Yet again, a series of clicks were played into my ear.

The specialist explained the results of this test. He told me I had a form of a condition called endolymphatic hydrops in my (good) right ear. Endolymphatic hydrops (also known as Cochlear hydrops) is thought to be an early form of Ménière’s disease. Basically, it is a problem with the fluid in the inner ear. This diagnosis explained the pressure and feeling of fullness in my ears; the tinnitus; the hearing loss; and dizziness I had been experiencing. The specialist thought it was likely that the hydrops was also the underlying pathology affecting my left ear six years ago, when I had begun to experience tinnitus that had lasted three years. He felt I had probably had Cochlear hydrops in my left ear all these years, and it had subsequently resulted in my sudden sensorineural hearing loss.

After five hours of tests and consultations, we had a lot more information and a bit of a plan. I was to wait for the blood test results. I was going to take some more strong antiviral medication for 5 days, in case of the hearing loss being a result of a virus. After completing the anti-viral medication I was then to start inner ear vasodilator treatment by taking a medicine called Serc 16mg, for 4 weeks, to see if this had any effect on reducing the pressure in my ears.

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Author: myhearinglossstory

Hi, My name is Carly. I am 34 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 second opinion (and lots of medical terminology)”

  1. Wow. What an epic journey you have been on…my hearing loss in my right ear has no explanation…they are assuming the nerve have just died for no reason…I do use a hearing aid and it does help greatly but it will never restore my hearing…Ive gone through many of the tests you have…its a long and frustrating road. Much love and energy is being sent your way!

    Liked by 1 person

    1. Thank you for the comment! Yes it’s an epic journey, that’s still happening! I am glad your hearing aid can be of some help, but I understand that it’s never the same as real hearing…Thank you for the love and energy – I need it! Take care and I hope you are feeling better and the evil Yorkshire flu has finally gone! Carly

      Liked by 1 person

  2. Hi Carly. Once again, I see that you’ve been through some wicked testing and probing for your hearing problem. You are to be commended for your fortitude to withstand all this. It is exasperating, frustrating and time consuming, but at least on this occasion you got some valuable, if a bit disheartening, information. I have a couple of questions and please tell me if I am being too personal about this. When they tell you that you have lost 90% of your left ear hearing, does that mean low frequency as well as high frequency hearing? If it is both, does this qualify you for a possible cochlear implant procedure?

    With any luck, this approach with the new medicines will have some positive effect. It sounds like there is more than just one thing going on here and that usually means a bit of time before the right solutions can be found. However, based on what I can judge about the your character, I’m guessing you have the will and the determination to see this through. You have of us in your corner cheering you on.

    Liked by 1 person

    1. Hello Al. What a lovely comment, thank you 🙂 Yes, all the testing is tiring, but I really want to find out as much information about what happened to my hearing as possible. Regarding your question – no it’s not too personal 🙂 I am writing my blog to be completely open about my experiences…It’s a good question! I think that in England, you need a significant hearing loss in both ears to qualify for a cochlear implant – although i might be wrong. Here in Spain, the only types of hearing support that have been mentioned so far, is a CROS hearing device that picks up sound from the deaf side and sends it to the hearing ear, and also the BAHA (bone anchored hearing aid) that would require an operation – but that is also able to be trialed on a headband, to see if this would be of any help. When the doctor said 90%, I realize he was trying to simplify things for us. Yes it is a hearing loss of high and low frequency, and in decibels I have been told values of between 70-80 dB, and also 85dB (from different tests), which puts me in the ‘severe’ hearing loss category. Yes, i am hoping that advances in medicine, will prove helpful in the future. And, I also feel there is more than just one thing going on. I will keep you updated… Thank you for being so positive and for cheering me on – it means a lot 🙂 Take care. Carly

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  3. Hi! Finally I’ve had time to get myself back onto the blogging world and the opportunity to catch up with how things are going with you, and from what I’ve been reading, I’m sorry to hear (oh the ironies of that word to deaf people!) of the struggles you’ve been going through. Firstly, although the information you’ve had with your tests in England have been disheartening, look at it in the positive way in that you are working towards a clearer understanding of what is happening, what is wrong, and hopefully what the solutions can be. I see someone has mentioned cochlear implants, something I was going to say that they may be able to offer you this as an alternative if your current levels are too severe for hearing aids to be viable. Stay strong, do take care of yourself, and most important of all, even when times get difficult, stay positive 🙂 you can always contact me if needed

    Andy xx

    Liked by 1 person

    1. Hello Andy 🙂 It’s great to see you back in the blogging world! Thank you for reading my post and for the supportive comment. Yes, i agree, any information (whether easy or difficult to ‘hear'(ugh, ironies!)) is good information. I am still in the process of having more tests and seeing other types of specialists at the hospital here in Spain. All I really want is more information. I am staying strong and am lucky to have such great people to support me, and I am also finding comfort and support in this wonderful world of blogging 🙂 Thank you so much for offering your advice and support, and i wont hesitate to contact you if I have any questions 🙂 Take care, and I look forward to reading your next post. 🙂

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  4. Wow, that sounds like a lot more information than you got from the other doctor you were at. That’s got to have made you feel a little better. I hope that what he prescribes for you helps out!

    Liked by 1 person

  5. Thank you for sharing your story. I was led to your blog in a search of mumurations. I am also fascinated with them. I was interested to hear your hearing loss story. I also am experiencing similar hearing loss. Mine started 15 years ago with an extreme loss of high frequency in my left year one night. Three weeks ago another extreme hearing loss occurred, again in my left ear. I’m going to forward this information to my audiologist and my ENT. I completed the steroids cycle and saw some improvement in clarity but not volume. Thanks again for sharing your story.
    I love the way you worded this idea:
    Murmuring is also a feature of my life. Living with high-frequency hearing loss renders the world low frequency and often humming in the background, where noises merge together and voices join even when separate.
    Thank you–Michele

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    1. Hello Michele. Thank you for reading and for your comment. I’m sorry to read that you have experienced hearing loss two times. I hope you are doing ok and are given a good level of care from your ENT, and have support from loved-ones. I’d like to know if you have any improvements. Sending you my best wishes. Take care. Carly

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  6. Hi Carly, thank you for your follow. Sorry to hear your ordeal of finding out your hearing situation. Lost 90% is worrisome. I lost 25% of the high frequency on my left ear. If I listen to music and put the headphone just on my left ear, I can tell that I miss some sounds that I could hear with my right ear. When having conversation, I missed about 25% of what people are saying (so that’s about right). On top of it, I have tinnitus on the left ear, the ringing is intolerably loud at times. My right ear started to degenerate also, started having hearing loss and start ringing off and on. I went to the ENT for 30 years for my left ear, all I got was hearing aid. There are some clinical trial in our area, I haven’t been to any of them yet. Perhaps eventually I will. They don’t just assume the hearing loss.
    Where in Australia do you live? My husband was born in Walla Walla, came to US when he was 12. We went back to visit some years ago.
    Thank you for the follow. I follow back. Keep in touch!

    Liked by 1 person

    1. Hello Miriam. Thank you for your comment and for following me 🙂 I am sorry to hear about your hearing loss and the tinnitus. I sympathize with you. To help with tinnitus, I have heard of things called tinnitus masking devices. Here is a link with an explanation: http://www.hear-it.org/A-masker
      I don’t have any experience of using these, but playing some kind of gentle ‘white noise’ into your ear, might help your brain stop thinking about the tinnitus sounds. I find that during the day, my tinnitus isn’t too bad as there are usually background noises that my ‘good’ ear can focus on, and hence i don’t concentrate on the tinnitus noises. For me, the worst time is when i am trying to go to sleep…
      I don’t live in Australia, I live in Spain – although I am originally from the UK….Take care, and please keep in touch. I am interested in what kind of clinical trials there are…Carly

      Liked by 1 person

      1. Hi Carly, I do use soft – a collection of adagio music to listen for bed time. I tuned to the lowest volume. I fall asleep with it and the volume won’t’ wake me us. My husband was born in Australia until 10, live in England at 11, 12, then came to US. I like the architecture in Spain. It’ hot in the summer. We went in August. Some shops were no open from 2-5pm.

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      2. Hello Miriam. Yes, the architecture in Spain is beautiful 🙂 And, yes it is very hot in Summer, especially in August! In Madrid, lots of the residents leave the city to go to cooler places or to the beach. Many businesses aren’t open in August, and often between 2-5pm people have siestas 🙂

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  7. I have moderate hearing loss in both ears and wear hearing aids. My hearing loss was a combination of things, but it is low frequency and now includes mid-frequency. It makes conversations very difficult at times. After the CT scans, ENT consults, and a plethora of exams and tests, my hearing loss is all sensorineural. Thanks for sharing your own journey!

    Liked by 1 person

    1. Hello and thank you for the comment. I can imagine how having hearing loss in both ears can make conversation difficult, and I bet it’s even more so when there is any background noise. I’ve also had lots of tests and scans, and my hearing loss is also sensorineural. Take care. Carly

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