2 WEEKS THAT CHANGED MY OUTLOOK ON LIFE FOREVER
Nikki teaches cookery classes and now also works for Aston Hearing. Nikki experienced Sudden Sensorineural Hearing Loss (SSHL) for a second time in May this year – this is her story
Bank holiday weekend May 2016 I was walking the dog when I noticed my hearing had altered and it sounded like I was shut in a tin box. Sounds echoed in my hearing ear. I was not unwell or suffering from any dizziness and carried on through the day as normal. My hearing improved as the day went on but I had to turn up the volume on the TV above my usual level.
I awoke with slightly reduced hearing but assumed my hearing aid needed adjusting and made a mental note to call Aston Hearing for an appointment the following week. I changed the filter etc and assumed all would be well. By mid afternoon there was a real noticeable drop in hearing especially in my own voice perception. I realised something was seriously wrong with my hearing and it was not my hearing aid at fault. I knew I needed some expert advice but it was a Bank Holiday Saturday late afternoon! We drove past Aston Hearing to see if anyone was there and luckily at 5pm Duncan, my audiologist, was still at work. He was about to see a client but said he would call me as soon as he had finished. True to his word he called within 15 minutes and we returned to the office. We both knew that this was serious and the audiogram confirmed a significant drop in low frequency range and that it was Sudden Sensorineural Hearing Loss, AGAIN. At this point my hearing was minimal but I could just make out some voices. Duncan adjusted my hearing aid to maximise what hearing he could to get me by.
Duncan advised us to go straight to A&E and with the audiogram printout we had hard evidence of what was happening to present to the triage nurses. With past experience of SSHL we knew this was a medical emergency requiring high dose steroids very quickly!
We arrived at A&E at 6pm and even though we presented with proof of my condition we had to wait in line to be seen. Unfortunately hearing loss is totally invisible and I looked fit and well. I was struggling to keep what little hearing I had and was desperate to see a doctor and get the steroids I needed.
7:30pm we saw a nurse for an initial assessment and we emphasised time was running out. We saw a doctor who took the audiogram very seriously and went off to consult with ENT.
9pm she ordered a CT scan and was arranging for high dose steroids, for 2 doses.
11pm CT scan was cleared and I was seen by a junior doctor for steroids. At 11:30pm I was given one 60mg dose of Prednisolone and an appointment at the John Radcliffe clinic the next day. A&E were not able to let me have more than one dose of the steroid. Throughout the wait at A&E Duncan and Kate at Aston were in contact via text to check on progress.
I woke up with no hearing at all. NONE. I could no longer hear myself speak and had no sensation of my own voice. I was in a world of silence and was clinging to the hope that the steroids would start to work to restore some hearing. Then the tinnitus started. Silence was replaced by a constant machine noise inside my head. We arrived at the JR clinic and were told to wait for an appointment when the doctors had finished the ward rounds. Time was passing and I knew I needed more steroids. It was frustratingly difficult to convince anyone how urgent my case was. I discreetly took myself into the bathroom and cried for all the things I could no longer hear and what my life might become. The voices of my children, husband, friends, family etc would all now be a memory.
This kicked the staff into action as apparently the entire waiting room could hear me crying! I was seen almost immediately.
I was given 5 days of steroids and an appointment for an MRI and follow up at the ENT clinic. The initial diagnosis was that I either had an autoimmune response or a viral infection which caused the hearing loss. Steroids were my only chance of hearing again.
Day 4 Bank Holiday Monday. We accepted that we needed to find ways of communicating for immediate use and the longer term. My family learned to fingerspell within a day and we found an app on the smart phone that would convert voice to text. Thankfully, I could lipread and this was really what helped me through the early stage of sudden hearing loss. I improved as time went by but it only works one- to -one and not for group situations. I started planning how to teach my family to sign with me and assessed my diary for things I would now not be able to attend.
I had an assessment at Aston Hearing which included an audiogram. The results showed a flatline graph of total hearing loss. This was expected but was hard to see all the same. Duncan was very supportive and we discussed cochlear implant options for longer term and support groups that would be available to me. We agreed to stay in touch as my treatment and ENT assessments continued.
I was struggling to tune out the tinnitus in my head and decided to look into yoga or breathing techniques to help. It went away when I was asleep so there had to be a way of turning the noise off! I made a decision NOT to cancel everything in my diary but to try and find a way round the hearing problem. I could feel myself withdrawing from my usual activities and had to make a conscious effort to not give up. I went to a fitness class and found everyone very supportive which made it easier to carry on.
MRI and ENT appointment. Advised to continue with steroids but tapering down to zero over the next week
GP appointment to follow up treatment
Visited my daughter in Nottingham and attended The Ear Foundation open day. This was a really helpful opportunity to talk through cochlear implants and meet people who had experience of them. They were able to reassure me that some hearing in the future was a possibility. I met a lady who has a cochlear implant and really valued her honest account of how it is to wear one.
I played tennis for the first time with my usual tennis group. The coach was forewarned about my hearing loss and was himself trained in BSL so we knew we would get by. With patience on all sides it was possible to play although I realised it would take a while to adjust to not hearing the tennis ball bounce or being hit. A new approach would be required but I was game for finding a solution. Deaf tennis is possible.
I was taken to a spa for a treat to take my mind off the tinnitus and just get away from everything. I was able to have some reflexology at the suggestion of a masseuse who thought it might help with my condition. It was really painful at one point when she pressed a certain toe and at the end she explained the link between that and the ears.
I met up with Kate at Aston Hearing in Thame to talk through a way forward if my hearing was never to return. We communicated well by me lipreading and occasionally voice to text and I was feeling much more positive about the future and things I would be able to continue with. We also discussed trying for a hearing dog to help me later on. Knowing I had such great support and understanding from the team at Aston meant the world to me.
Craig finished school for his A levels today and I was very worried about how he would concentrate with all that was going on with my hearing etc. I spent the morning baking and then had the sensation of hearing a loud background noise. I put my hearing aid back in and turned on the radio. There was some sound! An hour later my hearing was back and the tinnitus was gone. I was desperate to call my family just in case this was not going to last so I called my daughter at uni. It was wonderful beyond words to hear her voice again as I had thought it would never happen.
So 2 weeks to the day since my hearing started to disappear, it returned. I called Kate at Aston and texted Duncan to share the news and arranged to go back for another hearing test. It showed that my hearing had in fact returned to its previous level with no deterioration.
Follow up meetings with the ENT department were to try and find the cause for the hearing loss. The MRI and CT scans were clear and all blood work normal with no sign of viral infection.
It was agreed to have an annual check with the ENT but no further action required.