Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

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Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

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 eardrum 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 earphones. 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’ 🙂

Testing Testing

Eight weeks after experiencing sudden hearing loss in my left ear, I was back at the hospital to have a test called a Brainstem Auditory Evoked Potential (BAEP). I had read that this test involves monitoring responses to a series of ‘clicks’ using electrodes positioned on the scalp. In my case, the BAEP could be used to assess conduction through the brainstem and auditory nerve pathways that are not as accessible to other testing procedures. In other words; the results could give the specialists more of an idea as to why I couldn’t hear anything in my left ear.

I arrived at the hospital early in the morning, slightly before the time of my appointment. I was on my own, and feeling somewhat nervous about what was going to happen. I watched as people went into the room where they do the hearing tests. I watched people who arrived after me, go in before me. I guess that due to the amount of time the test was going to take, they saw the people first who were going to have the, less time consuming, routine hearing tests.

My name was called, and a man explained to me what was going to happen. He cleaned my forehead and behind my ears with what I assumed was alcohol, and then used what felt like a small piece of sandpaper to rub the same areas in order to help the electrode pads stick to my skin. Then he stuck two pads in the middle of my forehead, one above the other, and also one behind each ear. My face stung slightly as the alcohol permeated my newly exfoliated skin. The electrode pads were white circles of thin plastic with a silver metal circle and raised bit in the middle; where wires would be attached. They looked like small targets on my head. I asked one of the staff members who, after my many hospital visits, I was now well acquainted with, and who always greeted everyone with a smile and a joke, for something to tie my hair up with. He shortly emerged from one of the rooms and handed me an elastic band. So there I was, on my own; hair roughly tied up with an elastic band and white targets on my head. I waited for the next step of the process. I was sitting in a doorway. Nurses and hospital staff kept passing by, taking a look at me and making little comments such as, “Pobre!” or “Pobrecita!” –  Literally translated as “Poor person!” or “Poor dear!” Every time someone came in or out of the room of the doorway in which I was sitting, the people in the waiting room opposite were presented with me, the ‘pobrecita’, with the electrodes stuck to her head. When the doors slid open, there I was for all to see! I waited for over an hour. They were carrying out the test that I would be having, on a young child, and it must have been taking longer than they had planned for.

When it was my turn, I was shown to a small room with white walls, two chairs, a desk and a computer. I was asked to sit on a chair that was covered with a white sheet. Wires were then connected to pads on my head and behind my ears. I put on a pair of headphones and I was told to relax and listen to the ‘clicks’. My brain was going to do the work for me; I just had to sit there. I was also told that sometimes people fall asleep during the test. Throughout the process, I could hear lots of ‘clicks’. Some that were played into my good ear were almost painfully loud. I have no idea how anyone could possibly fall asleep; sitting in a small room with a stranger, with electrodes attached to their head with clicks being randomly played at loud volumes! I had the thought that, what if my brain was picking up the signals from me hearing my tinnitus noises and confusing them with the real sounds that were being played into my ears. Would this show on the results? I’m sure this isn’t the case, as most people with hearing loss also have tinnitus. But it was a thought that intrigued me. The test took about an hour. The electrode pads were removed and I was free to go home.

Three weeks later I was back at the hospital, with my boyfriend, for a consultation with an Ears Nose and Throat specialist. We were there to talk about the results of the BAEP test; whether the steroid tablets and steroid injections had helped me; whether my hearing had improved; and how I was feeling in general. My boyfriend and I had unintentionally placed a lot of hope in this appointment. We hoped the specialist would be able to tell us some more information or give us a plan of what to try next. We walked into the specialist’s office with all of our questions written down, so I wouldn’t forget to ask them. Things always feel a bit rushed in the hospital, and they are always so busy. My heart sank when I realized it was a specialist whom I hadn’t previously met. I had hoped to see one of the many specialists who were familiar with my story. I had done a hearing test before I went into the consultation room, and the specialist explained that the test results were the same as when I first lost my hearing. He told us that the MRI results were normal: I already knew this as I had received these results weeks ago from my GP. He also told us that the BAEP test had shown the same as the hearing test – that I couldn’t hear. The test results weren’t explained in any more detail.  He said that sometimes there are cases of sudden hearing loss where, within a 6 month period, a patient’s hearing comes back naturally. He told me to wait for three more months and then come back for another consultation. Maybe a hearing aid could help me if there was no change in my condition.

Deflated, we went outside of the hospital and sat down on a bench in a park across the road.  I cried. They hadn’t told me anything I didn’t expect or already know.  I didn’t really expect them to have any more answers to tell us. But I couldn’t help but raise my hopes for a solution. I didn’t want to stop trying things that could help my situation.

We needed to put our minds at rest. We decided to seek a second opinion.

 

Sounds of Madrid

There are days where my unilateral hearing can make me feel so vulnerable. Going outside can be such a challenge and one that I have to mentally prepare myself for every day. I live in a city, and as soon as I open the apartment block door, I walk out into a mess of noise. Loud deep roars of traffic and the chatter of people force me into a bubble of isolation. When I am surrounded by sound, I cannot sense when there is something approaching my deaf side. I do not realize when someone is walking next to me, or if a bike or car is about to pass me by. When there are background noises, it is difficult for me to focus on conversation; I can’t hear individual sounds clearly, and my ear and head fill with pressure from the sounds, which also adds to the difficulty in understanding speech. If I am outside by myself, I try to keep my deaf ear to the wall, or next to the traffic, so that my good ear has a better chance of hearing noises of significance. When I’m outside with my boyfriend or friends, I have to keep them on my hearing side and find myself constantly looking at them, to check if they have said something to me.

Travelling on the metro is uncomfortable. The loudness of the train approaching and the screech as it nears the platform can be almost unbearable. Once on the train, there is a bell sound and an announcement of each stop. This bell can be piercingly loud. Before arriving to a station, a recorded announcement says: “Próxima estación [name], correspondencia con línea [number]”: “Next station [name], transfer with line [number]”. Some metro lines have announcements to mind the gap between the train and the platform. Some trains have a whistling sound when the doors close. The metro is a challenging bombardment of sounds. I worry when I’m travelling alone that people might talk to me, and I won’t be able to hear them, or even worse, not even realize they are speaking to me, if they are on my deaf side. They don’t know I can’t hear them. I always worry about seeming rude if I don’t respond to people.

Madrid is a city that is bursting with the music of performers and entertainers. Every part of the city has its own soundtrack. People hop on and off of metro trains; wheeling their portable amplifiers, and various instruments: panpipes, guitars, violins, even miniature pianos. In metro stations, and in fact, anywhere in the city, you might encounter a man playing his violin to the soundtrack of Titanic. You might encounter someone playing the drums, made of pots and pans or other recycled materials, to a fast backing track beat. You might encounter another violinist, this time without a backing track, and passionately playing a well-known piece of classical music. You might encounter guitarists strumming guitars wildly and singing with raw passion. When walking into town, you can hear a Spanish guy sitting on the side of the street playing his guitar, singing Bob Marley songs in his own unique style; short high-pitched staccato sounds.

This intrinsic creativity, that is present in every part of Madrid, is enchanting. But it is also something that now presents me with a challenge. Now I am trying to enjoy the sounds of Madrid again. Now I am trying not to focus on the tinnitus that the loud sounds of music can bring, and not focus on the perpetual worry of missing a stranger’s words. Instead, I want to focus on learning to enjoy this wonderfully noisy city that I live, and that I am trying to love again.

The First Time… Part 2: Being Brave and Feeling Proud

When I first experienced my hearing loss, I couldn’t contemplate doing normal things such as going to a bar; which is a big part of the culture of Spain, where I live. I remember walking around the city, watching people spilling out of bars chatting sociably, and wondering if I would ever be able to feel comfortable again in this kind of animated environment; alive with noise. Then one day my best friend invited me to go to a bar where she was exhibiting some of her photos. I didn’t want to say no. I didn’t want to let her down. I wanted to see her, and her photos. So, the first time I went to a bar, with unilateral hearing, was to see my friend’s exhibition. Of course, it was going to be noisy, and I was mentally prepared for this. When we arrived, I immediately submerged myself in the sounds of vibrant conversation.  I managed to communicate with everyone and listened to them by tilting my head and making sure my good ear was facing them. Although it was exhausting and my tinnitus was ringing aggressively, I was really proud of myself for confronting such a challenging situation.

The first time I went, with unilateral hearing, for a haircut, I was so nervous. I knew the salon would be noisy and I knew the hairdresser would want to chat with me. I didn’t want her to think I was being rude if I failed to respond to her during conversation. So when I was sat on the chair explaining to her what I’d like to have done with my hair, I also told her that I was deaf in my left ear. She barely had a response, apart from saying “OK” and giving me a smile.  As she was cutting my hair she sometimes spoke to me on my deaf side. When she was blow-drying my hair, it was impossible for me to hear her, and she continued chatting happily. I could see her mouth moving in the mirror, but didn’t know how to answer her. Yet she didn’t seem to be phased. I guess hairdressers see so many different people every day, with so many issues, and learn to take it in their stride.

I love eating out in restaurants; in fact, it’s one of my favourite things. If I go to eat in a restaurant however, there are only a few tables that are accommodating to my needs. The best table for me is one that is in a corner, with a chair situated in a position that will allow my deaf ear to face a wall, and my good ear to face the direction of any possible conversation. The worst positions are: at a table in the middle of a room; sitting with my back to where the waiter will approach; and anywhere where my deaf ear is directed towards the waiter – This will result in me jumping up in my chair in surprise as I turn to unwittingly see a waiter standing next to me, who I hadn’t sensed was there.  The first time I went for a meal in a restaurant, with my unilateral hearing, was when my boyfriend’s sister came to visit. We went to a Thai restaurant on a weekday, and earlier than the average Spanish person eats. The restaurant was almost empty and I managed to get a good position at a table. Although there was very little noise from people talking, I found the Thai music that was being played, a distraction. My good ear struggled to filter out the music and it was difficult to focus on conversation. It was quite a difficult experience, in terms of my hearing-related problems and communicating. But I was really proud of myself for going, and it was worth the struggle, to have the experience of eating Thai food in a restaurant.

Every time I did something for the first time, I gained a bit of confidence. Things weren’t easy and often weren’t pleasant, but every day I was trying to do something ‘normal’. I was positive I would be able to enjoy things again. I just needed to familiarize my body with the new experiences and learn strategies to deal with any new issues. My life was still going to be full of experiences; it was just going to be a bit different.

 

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The First Time… Part 1

My life became a collection of firsts. I was doing normal everyday things, yet for the first time with unilateral hearing. Normal things became new experiences. Simple tasks became difficult missions.

I began with attempting basic activities; ones that I hoped would prove not to be too noisy or tiring. My boyfriend and I tried to think of quiet things to do in the city where we live. We would go on short walks around the city or spend time in a park. The park became one of my favourite places. In the park, there were no immediate sounds of traffic, only the occasional muffle of cars in the distance. The gentle chatter of people in the open-air proved a helpful distraction and assisted in drowning out my tinnitus. It felt relaxing to be in an open space. However, in order to get to the park, I had to first walk through the city. Opening the front door of our apartment building unlocked a world of noise. Going outside meant putting myself in a position where I felt physically uncomfortable from the pressure that filled my ear and head when I am surrounded by sounds. It would have been much easier to stay in the comfort of my own home, where I could control the sounds that surrounded me. But I enjoy doing things. I enjoy going out and exploring the city. I’m young, and I didn’t want to hide in our apartment. It was just going to take some time getting used to the new challenges I would be facing.

We started to go to more art and photography exhibitions. Often, when they were quiet, and there was space to move leisurely from painting to painting, a gallery was an untroubling and almost a soothing place to be. However, I realized that even galleries could present me with a challenge. One of the first exhibitions I went to was a photography exhibition. I had been looking forward to it. I had seen it advertised and we went on one of the first days of opening: this should have been a clue to the overcrowded environment that would await us. As we entered the room, we were surrounded by beautiful photos that had been in the world’s newspapers. Yet we were also surrounded by people. The photos were displayed on walls; either side of a narrow space that curved round in an arch, back to the entrance. There was hardly any space between each person, and everyone was shuffling around the small area, waiting to view the next photo. Everybody was talking. I could almost feel the voices bouncing from wall to wall. The sound had nowhere to go and was confined to the small densely populated space.  This experience left me feeling exhausted, disorientated and deflated.

Then there were the trips to the supermarket. These proved to be really difficult, and still continue to challenge me. There is an intensity of sounds in a supermarket that I had previously been unconcerned with. There’s a loud fan for the oven where they make the bread. There are people speaking over the PA system. There is supermarket music and people talking. In the supermarket, it is very difficult to filter all the background noise and I cannot focus well if someone is speaking to me. In the supermarket, there are the random people who always choose to speak to me: the old man who wants to talk about what kind of bread I’m buying and then starts to tell me about his son who is living in England; or the lady who’s asking for my help to find where the cleaning products are. These interactions are a challenge.  I can’t hear what the person at the checkout is saying to me. I have learnt that usually, they are asking how many bags I need; if I am playing by cash or card; or if I have a store points card. I have learnt to just ask them to repeat themselves if I don’t know what has been said to me. Then, if I really can’t hear what they have said to me, I just give them a smile. As I am English and living in Spain, and still in the process of learning the language, perhaps my lack of hearing is often disguised as a lack of understanding.

Every day I was learning new ways to tackle the issues that I was now facing as a result of my hearing loss. Every day I was going outside into a world of noise and trying to continue to experience life as much as possible.

Frustration

The next few weeks after leaving the hospital, blended into months. I finished taking the corticosteroids and I had 4 injections of steroids into my ear, each a week apart. Yet there was still no improvement in my condition.

Friends and family were keen to ask me how I was feeling. They saw that I was out of hospital and assumed that everything was OK. But it wasn’t. I was struggling through every day with deafness and other related issues: sensitivity to noise, light-headedness, tinnitus and the ever-present pressure in my ear and head. I almost felt like I was letting people down; telling them that I was not feeling any better. I looked like my usual self but was feeling awful. There was no visual evidence of the discomfort and frustration I was feeling. My problem was completely invisible. If I had a visible scar, maybe people would be able to empathize with my situation a little easier. I wanted to tell them something positive, and I didn’t want to upset anyone, by responding honestly. I didn’t feel any better. Nothing had changed since the day in the auditorium when this all began.

Everyone seemed to have a story about an ear problem. There were stories about ear infections and tinnitus, and about ears feeling clogged when flying. Many people also turned into specialists; asking me if I had recently been swimming or if I had been on an aeroplane? Did the hospital specialists check for ear wax? People didn’t really know what to say to me. I know that they wanted to sound positive, helpful, sympathetic…I did appreciate their support. People just wanted to show they were thinking of me. I would have done the same if one of my friends or family were in my position. I would have wanted to help solve the mystery and for everything to be better. I didn’t want to sound negative, but I didn’t want to lie to people. Sometimes the truth is difficult to share, and it can also be difficult for others to hear; especially when they have feelings invested in the person sharing the news.

I couldn’t go to work. Being an Early Years teacher demands having energy; being able to tolerate high levels of noise, being able to go up and down stairs without feeling lightheaded, being able to hear in background noise, being able to sing and dance without feeling dizzy. The children in my class were only 4 years old. They needed a teacher who could give them the care and attention they deserved. I missed being in a classroom. I only briefly met my new class, who I instantly loved, and who I felt like I’d abandoned. It was so frustrating. I could walk and talk and breathe and see. I looked the same. But to be able to do my job properly I needed to feel better.

I was having meetings every two weeks with my doctor to inform her of any updates. She also seemed to be getting frustrated with the absence of any change in my situation. Every time I met with her I would tell her that I felt the same. One time she explained to me that it was difficult for her also. Usually, she can give her patients some form of hope. Usually, she can give her patients a diagnosis, or prescribe some medication, and then with time, symptoms will improve. Usually, people show some form of recovery and this gives them hope. However, in my case, there had been no change in 10, 11, 12 weeks, and she knew it was difficult for me. She told me to take comfort in the knowledge that my hearing loss wasn’t a result of a more sinister problem, such as stroke or a tumour.

There was still hope. 12 weeks after the day of my sudden hearing loss, I went to see a specialist at the hospital. He told me that sometimes hearing can come back spontaneously within the first 6 months after the occurrence of hearing loss. I was told to wait and see if my hearing would improve naturally. I would go back to see the specialist in 3 months, and if there were no changes in my condition, they said a hearing aid might help me.