Laura was diagnosed with hearing loss at age 2, and at that point started using hearing aids. She got used to the hearing aids and expected to use them throughout her life. But then, sudden hearing loss caused her life to change almost overnight. Here’s Laura’s story.
I have had a hearing loss since birth, but initially the doctors were not convinced that it was a hearing loss. Rather, they thought it was a glue ear or some other infection. My mum sought other opinions until finally at age 2 I was diagnosed with hearing loss as a result of prenatal rubella.
I was fitted with two hearing aids and got on well with them. When I was about 14 I stopped using the aid in my left ear—I considered that my bad ear as it didn’t get much benefit from the aids. That was about the only issue I really had with my hearing aids. No other treatments were ever suggested to me as I had functioned well with the hearing aids in mainstream schools and university. My hearing loss never affected me in a negative way; I didn’t consider myself to be any different from my peers, nor was I treated as such by anyone.
Sudden Hearing Loss
Then I woke up one morning and everything sounded like it was underwater. And, I had mild tinnitus in my right ear. I sought the advice of my doctor the next day and was advised that I had a glue ear that would clear up within a few days.
But it got progressively worse. I could not hear on the phone, and one morning I woke up and couldn’t hear anything at all. I immediately went to my local emergency room and was advised that I had a protracted eardrum with fluid behind the eardrum. They told me this would eventually go away with the help of decongestants and steam baths.
In the meantime my mother had contacted my ENT doctor and arranged a consultation. During that consultation I had some tests taken which confirmed that I had sudden hearing loss.
The diagnosis affected my life in a huge way. I lost confidence in all areas of my life, from social to professional. I felt useless at work, as a large part of my job relies on telephone communication. I withdrew myself from lots of social occasions and missed out on a large part of my friends’ and families’ lives.
Learning about Cochlear Implants
My ENT doctor told me that a cochlear implant was then my only option to be able to hear again in my right ear. At first, I was dead-set against it. I didn’t want to have an operation and risk losing the residual hearing I had left. I also felt that it might make me look different, as vain as that sounds.
At the time, I didn’t know enough about cochlear implants to understand them fully. But the more research I did, the more I came around to the idea of having an implant.
After six months living with hearing loss, I started the application process to get a cochlear implant for my right ear. Although the hearing in my right ear was within the guidelines, the hearing loss in my left ear wasn’t. Because the NICE (National Institute for Health and Care Excellence) criteria in the UK required that both ears be in guidelines, I was refused the implant. That was devastating news. So, my ENT doctor referred me to another hospital. By the time I applied there, my left ear was within the guidelines. I was then offered an implant in my right ear and, after extensive research, chose a MED-EL cochlear implant.
When I had my activation, at first everything and everyone sounded the same: really high pitched (like a little child) and tinny. However, this went away quite quickly and people gradually began to sound more “normal.” I couldn’t really tell the difference between sounds as I remembered them from before, and how they sounded through the cochlear implant.
After getting my cochlear implant, I felt like I had become myself again. I became more confident, more outgoing, and positive about the future. It was fantastic to be able to reconnect with people and not have to rely on others or lip-read constantly. After only 3 months, I was being called a “star patient” and scoring 100% in my lip reading-and-speech test, 99% on the speech-only test and 94% on the words-only test.
It kept going great until about one year after I got my cochlear implant.
Her Second Sudden Hearing Loss
At the beginning of 2016, the sudden hearing loss happened all over again—only this time in my left ear. I recognized the symptoms from my previous experience with sudden hearing loss and went to my local hospital.
It was a blow. I knew that before I had very little hearing in my left ear, but what I could hear was helpful. I used it for hearing when there was background noise and distinguishing the direction of speech and sounds.
The doctor prescribed me some oral steroids that I requested, and I got an appointment with an ENT doctor. The doctor told me he suspected it was sudden hearing loss and suggested I get steroids injected directly into my middle ear.
Laura’s Hearing, Today
My last injection was on Friday, February 5. They are not guaranteed to work, but I want to give myself the best chance to treat and regain some of the hearing in my left ear. Unfortunately due to the NICE criteria here in the UK, I’m not able to get bilateral implants unless there is a further disability such as blindness, so that is not a possibility for me. If it had been an option, I would not hesitate to get a second implant.
Laura will join us again next month, when we’ll start sharing some of her practical tips for someone who has—or is considering—a cochlear implant. Until then, you can read more of her story at her blog: https://theinvisibledisabilityandme.wordpress.com. Thanks, Laura!