Deteriorating hearing but no change to AN following contrast MRI

[Poppies4life]

Has anyone experienced further hearing loss and several tinnitus sounds in same ear? I have had no chandpge in AN for 6 months so on watch and wait but finding it hard to follow tv without subtitles. Noticed that I now cannot use my Apple EarPod in right ear by itself. Going in social settings is completely irritating and miss what is being said, I try and guess but then get funny looks as not the answer they were expecting!! I have asked for a referral to audiology for a hearing aid as physio at balance clinic feels it will help, anyone else experienced this and had good results?

[Daisymeadow]

Hi. My hearing went downhill quite fast a few months before surgery. I didn’t see an audiologist though as I knew it would go completely post surgery so decided to wait.

I’ve just been tested for a cross aid which I can pick up in a couple of weeks. I’m in two minds - I know they really don’t help in noisy environments.

Keep us updated. I hope they help you.

[Poppies4life in reply to Daisymeadow]

Thanks Daisymeadow, agree I don’t need any extra sounds but hoping it will help with balance issues and will settle enough for me to try and start driving again. Worth a go and will post how I get on. Hope all goes well with your cross aid x

[flappers]

Hello! Yes, after my initial diagnosis of a then 15mm AN I was referred to audiology. My main symptom was sudden onset of screaming constant tinnitus on the right side only. I was told I had moderate hearing loss in that ear and given a Signia hearing aid with tinnitus masker setting. It take a little while to get used to it but it does help with both the hearing and tinnitus, sometimes more than I think! Definitely worthy trying out different settings until you find something that helps. Since mine doubled in size and I’ve had radiotherapy, I haven’t noticed much difference, but May explore cross aids if it does. I’ve found hypnotherapy helpful to manage the tinnitus which, mad as it sounds, you do adapt to as your new silence. Brainstrust have great resources for those with ANs. Hope you are finding a way to manage the stress and symptoms. It gets way easier in time.

[Poppies4life in reply to flappers]

Thanks flappers that’s really useful to know, feel like I have nothing to lose at this stage and willing to give anything ago. You describe your tinnitus as screaming, this is the point I am at then it has a more subtle popping that seems to sit underneath. Learning to acknowledge it and distract myself, thankfully it doesn’t stop me from going off to sleep. Not thought about hypnotherapy but do try meditation techniques and yes need to tap in to these resources because my AN is not going away!

[whitefishbay]

I had the hearing loss before the diagnosis of AN. Got the nhs hearing aids and you have to stick with them and learn to fiddle around with them. Even if you go on to buy more high tech hearing aids after awhile it is good to start out with these. They help. Sometimes they itch in the beginning and there can be feedback. I go to Audiology alot to tweak them. You must persevere. I still miss things though and get funny looks - I tell everyone I am deaf and have a brain tumor (benign) - that stops them in their tracks. Good luck.

[Poppies4life in reply to whitefishbay]

I have started to say this too whitefishbay and you are right people do not know what to say. Normally it’s an instant hug or sad look on their face. I have worked with hearing impaired adults and children and so understand the importance of sticking with something. Thanks for the advice x

[Pinkrose1]

Hi, yes my hearing and tinnitus deteriorated quickly too. I was given a hearing aid and found that just a few weeks later i couldn't hear with it anymore, i initially thought it was broken until i realized it was my hearing.

[Poppies4life in reply to Pinkrose1]

Hi Pinkrose1, how do you cope with social settings? Do you avoid or have other coping strategies? Any advice as feel as though my life is on hold and loved meeting up with friends x

[Pinkrose1 in reply to Poppies4life]

At first i really struggled in groups and afterwards often ended up in tears as i felt so much on the edge of things in conversation. I found it mentally tiring especially when everyone was in masks but as time went on i learnt to adjust to it and to be open to people i met telling them i had no hearing on the one side. (Previously i just tried to muddle through piecing things together and often getting it wrong ) I find meeting up with friends in some coffee shops is too much for me as they are often noisy and conversation becomes difficult so we meet up at quieter places or less busy times of the day. Friends are very understanding when it's explained to them how you are struggling with things. In time you will find you start adjusting to things better and it will get less frustrating. Hope you are able to enjoy your social life again soon x

[PLTM in reply to Pinkrose1]

Hi nice to know I'm not alone, coffee shops are so noisy with machines and wooden flloors. Try to sit against a wall, that helps a bit. It is best to tell people, I used to feel very isolated but once you tell people they are very happy to move around to talk yo your " good" side. Even got chatted up in this way which did me the world of good🤣. Hang in there. Sending love.❤

[Kristyll]

I had but it was many years ago and thankfully things are changed and up dated. Physio is good but I think the hearing loss is inevitable.

[Poppies4life in reply to Kristyll]

Thanks Kristyll, my skull based nurse tells me I have to make myself dizzy with the physio exercises to retrain my brain but easier said than done. Tend to be better around the house but going out is different as it’s the spacial awareness and sounds and my brain trying to process things so feels like pressure in my head and my eyes are dancing. Very exhausting and now that a hearing aid may not make much difference. X

[Kristyll in reply to Poppies4life]

I had all those DIZZY MAKING excercuses to do they do help eventually. Good luck x

[HBS68]

It is a difficult situation to understand what is best. I have tinnitus in one ear with a AN being monitored. My hearing is bad anyway, old age, and not helped by the distortion in one ear. Before the AN was diagnosed the audiologist suggested hearing aids. After the AN was found I was with the Neuro department with no mention of hearing aids. After a year and the AN growing the distortion increased. I asked to be referred back to audiology, They suggested one hearing aid to help. When I had it fitted I saw a different audiologist who thought it was a waste of time as all it would do was amplify the distortion. I use it and have it set to block background noise, not sure it does a lot but it definitely increases distortion on standard settings.🤷‍♂️

[audaparizeau]

I'm sorry to hear about your difficulties with hearing loss and tinnitus. It's not uncommon for individuals with auditory neuropathy (AN) to experience changes in their hearing over time. Many people find relief and improved communication by using hearing aids. I encourage you to explore the option of a hearing aid. It's best to consult professionals who can assess your situation and provide personalized recommendations. In the meantime, if you are in Canada you can try out a free hearing test.