Not yet diagnosed....AN

[KawasakiZ650]

Hi, I'm 37 and woke up 3 weeks ago with complete hearing loss in 1 ear, severe tinnitus and vertigo.

I've been in the slow process of having hearing tests at ENT which show almost complete deafness 😔

The vertigo seems to have subsided which I am thankful for but am just hoping it's not an AN so I can get my hearing back!!

I'm currently on extremely strong steroids to see if it helps and if there is any inflammation in there to reduce. If this doesn't work (they haven't done anything do far apart from stop me sleeping 😴) then next stop will be MRI which the doctors seem reluctant to do so far.

Sending best wishes to anyone going through the diagnosis and uncertainty and also those on here who have been diagnosed. I guess the outlook remains positive but you really don't know how lucky you are to have your hearing until you lose it!! 🩵

[flappers]

Hi Emma, you are at a really stressful place of not knowing what is happening and why, and our brilliant brains are very good at going into overdrive about what ifs! I’m hope you can find a way to stay in the moment, know that whatever is causing your hearing loss, you will adapt to it, if it is something that will go on for the longer term. I thought I’d never adapt but I seriously have and am living my very best life, despite it all. I’m hope you have a very temporary issue going on and you don’t need to join our AN club, but in the unlikely event that you do, it is amazing how we adapt and manage. I’m writing this 7 months after treatment, my tinnitus and single sided deafness mainly ignored, particularly as I can hear the cicadas noisily singing in my other ear… from my hut on a beach in Thailand!! It’s app about finding the balance, pardon the pun 💋

[KawasakiZ650 in reply to flappers]

Thanks Flappers, I must say whatever the outcome I'm feeling very positive reading through all the comments. Before my total hearing loss I had slight hearing loss and tinnitus I had adapted to and learned to live with, I guess I'll do the same again on a higher level.

You really sound like you are living your best life....how amazing, Thailand!!!!

I am definitely trying to find positives where I can like not being able to hear my partner snoring at night 🤣 and being able to ride my motorcycle without earplugs!!! 🙃

Thanks for your reply and sending best wishes!!! 👌

[Kristyll]

it certainly makes life a lot more difficult. Go through the diagnostic process to see what you definately have and remember to be kind to yourself, good luck xx

[KawasakiZ650 in reply to Kristyll]

Thanks Kristyll, 100% try to be kind to myself and others, it's one of the only positives I tried to get out of that crazy pandemic we went through....its definitely easier to be kind to others but I'm learning to be kinder on me 😁

Thank you for your reply, best wishes xx

[Ballantyne56 in reply to Kristyll]

hi Kristy,

I was wondering if you have ever heard of anyone getting a terrible noise in their head on the side of there tumour.

I keep getting days when I hear a loud noise and fell very dizzily.

Regards Margaret

[Kristyll in reply to Ballantyne56]

sorry not me x

[Pinkrose1]

Hi Emma, sorry to hear of your troubles. If there is no change definitely push for an MRI as that is the only real way to rule out AN and know for sure. Hope all goes well for you.

[KawasakiZ650 in reply to Pinkrose1]

Thank you Pinkrose. I get frustrated with how long everything takes in diagnosis....people wait for years and it's crazy. Just thankful I have been seen quite quick!! Best wishes to you ❤️

[LitoG1081]

This exactly what happened to me 4 weeks ago. My 2 weeks strong steroids just finished yesterday as well as had a steroid injection into my middle ear with no effect. I have another appointment tomorrow for the next step which I already been pre warned that I may have to consider using hearing aid and will just do MRI only to check for any underlying cause like tumour growth, I was hinted already that my hearing loss to my right ear is probably irreversible if there is no improvement after steroids . So difficult to concentrate due to the constant loud tinnitus from my affected ear affecting my hearing on my good ear.

[KawasakiZ650 in reply to LitoG1081]

Thanks for your reply!! Sorry to hear about your hearing loss. I'm really struggling with that the most. I'm struggling at work to keep up with conversations, being in a busy office, meetings in person and online. It's really starting to get me down. Even driving feels like I'm in some sort of underwater cube where I can't enjoy listening to my music like I normally do. I feel I will probably end up with the same prognosis of my hearing being lost, but at least once it's diagnosed, I could have the possibility of hearing aid to help! When my hearing was tested it was down on the 80-90 area on the chart which is almost no hearing. I have dealt with tinnitus for quite a few years, nothing this loud but it becomes a bit of an art and a mindset, learning to live with with it, there are some good apps and therapy groups about to give you some support there. I really hope your MRI goes well and I'd be really interested to follow your journey. Take care 🙂 xx

[JBBC]

Push for the MRI, that's the only way to truly know if you have an AN. I told my Dr. we needed to get to the bottom of my dizziness/unbalance, tinnitus, and feeling of fullness in my right ear. In the US, if you have insurance, it's relatively easy to get an MRI scheduled as long as the Dr prescribes it. I had one the next day, and the results two days later. I'm in the process of getting opinions on next steps. Prednisone didn't help with any symptoms and I really would like to get my balance back. Vestibular therapy/eye exercises have helped a bit. But as others have noted, you do start to get used to the symptoms and compensate for them. I hold onto railings or use a cart at the supermarket to help with balance. I listen to music to drown out the tinnitus. Hoping radiation or other treatment will help with the symptoms, but not expecting it... : (

[KawasakiZ650 in reply to JBBC]

Thanks for your reply, sorry to hear of your symptoms. I'm on my 2nd week of 13 Prednisone tablets a day..... they are doing nothing. The last few days I have started to feel really unwell at work wirh dizziness and unbalance 😑 Fingers crossed the MRI comes soon!! I hope you are coping OK sending lots of best wishes your way!!

[whitefishbay]

You need the MRI to diagnose the AN. Get hearing aids...they take awhile to adjust to but they do help (although why they are not better in 2023 I don't know!) You are only 37 sorry about that. Best of luck.

[KawasakiZ650 in reply to whitefishbay]

Thank you for your reply. I have actually seen some really cool hearing aids that people have designed but they are lots of money and of course not available on the NHS....we really need to bring it into 2023 like you say! Hoping to get my MRI so I can know and start to move on!! Thank you 😊

[KawasakiZ650]

Latest update: Thank you for all the comments and support.

I had my follow up appointment at the ENT today following the 2 weeks of steroids, which made no difference and my hearing test showed no improvement.

I have now been referred for an MRI but am currently waiting for my private healthcare referral as I was told today there is a 17 week waiting list with the NHS and then a further 6 week wait on top of that for the appointment.

It's really bad, in my opinion, that paying for private healthcare can get you seen quicker, but hey I have to feel lucky I'm paying for it 🤷🏼‍♀️

Now I just have to wait for that MRI. The ENT specialist I saw today mentioned AN and said it would be rare for someone my age to have it but that hopefully the MRI will rule it out 🤞

I'll be glad to know one way or the other so I can get some help with my hearing and hopefully limit the dizziness and sickness I've been feeling the last week.

[KawasakiZ650]

Update!

I had my MRI last week and the results one evening late last week, they told me there is no AN!

This is obviously a great outcome and such a relief!

Only downside is they can't tell me what is causing my symptoms and why I have suddenly woken up with no hearing 🤷🏼‍♀️

Sending my best wishes to everyone on this group and thanks for the great support mechanism it provides as well as informative sharing of experiences.

[Ayanne]

That’s great news! I’m really pleased for you.

I hope they can find out what’s causing your hearing loss