Hearing Loss

[Pebblegod]

In December 2023 I had acute Otitis media ear infection in my right ear, which perforated my ear drum. After many weeks of antibiotic ear drops the infection cleared slightly but I still had earache and significant hearing loss and still had a small hole in my ear drum which has not healed. As this had been going on for so long I asked my doctor if I could be referred to ENT to see if I needed a Maringoplasy. She told me it would be a least a year before I could get an appointment. In view of this I decided to go private. This was arranged with a senior ENT consultant. He told me the perforation was not my only reason for hearing loss and arranged a hearing test. Obviously there was a lot of hearing loss in my right ear, left ear was fine. He then suggested hearing aids and to go back if perforation did not health. I have never had any hearing problems before this. My feeling was that he thought I should expect hearing loss at my age. I was not pleased with his diagnosis as I thought aged related deafness came on slowly and usually in both ears.

When I returned home I remembered a post on here that mentioned eighth nerve involvement in hearing loss and wondered if this could be my problem. On delving further I also found on Vasculitis UK a paper on “Vasculitis and the Ear” they mention GPA which has all the symptoms I have. Do you think I am barking up the wrong tree or am I turning into a hypochondriac. Btw the consultant did know I have PMR/GCA/LVV

Any thoughts on this please you kind and knowledgeable folk. Apologies for the long spiel.

[DorsetLady PMRGCAuk volunteer]

This is the study on GCA patients -

link.springer.com/epdf/10.1...

Might be worth discussing with your medical team

[Grammy80]

As Dorset Lady mentioned, it is wise to investigate, but I thought I'd share my story of hearing loss. I'm in the States. My husband retired in 2005, and I was 74. We had insurance for hearing aids through his employer. My hearing was fine! (Though he wore aids), but I took his advice and got tested. At the end of the test, I was alarmed because there was a loud ticking in the office, and I told the Doctor about it.

Though I had been in the office a dozen times...I had never heard the clock~! I love my hearing aids, and some days, they 'ding' that the battery is low because they go in when my feet hit the floor...and into the charger when I hit the pillow.

I'm a GCAer....I hope it is an uncomplicated hearing issue and not a longer journey💞

[Pebblegod in reply to Grammy80]

Hi Grammy thank you for your reply. I have already order my hearing aids which are top of range Bluetooth which you can control from your iPhone and cuts out all background noise. Like yours it has a charger

[Grammy80 in reply to Pebblegod]

That's great!!! I just love them and glad for you....after learning how to pair them with my phone, now I also use ear buds for listening to books and talking on the phone. I know you'll love them....love the charger system too.💞

[Nextoneplease]

Hi Pebblegod 😊

Just thought I’d echo Grammy’s post. After many complaints about my hearing from my daughters, I finally got tested and found that my hearing loss was classed as moderate/severe!!

I now have my chargeable Bluetooth enabled hearing aids and I love them 😊I can hear the cooker timer, my grandchildren and the tv so much better. And best of all, I use them for hours on end to listen via Bluetooth to podcasts, audible books and even phone calls. You’re never alone with a hearing aid 😂

I hope you get on with your aids and love them as much as I do xx

[Pebblegod in reply to Nextoneplease]

Thank You for your reply Nextoneplease. I do like the idea of listening to audible 📕 books

[DorsetLady PMRGCAuk volunteer in reply to Pebblegod]

Use them all the time -since lost sight in one eye with GCA 12 years ago.

If you are a member of your local library you can get access to an App which gives access to a world-wide library -all free of charge. Loan period is 3 weeks initially, but can be renewed twice.

Just contact your library and they give you a code to access.

[Pebblegod in reply to DorsetLady]

Thanks again DL I will check this out

[SnazzyD]

Hearing loss occurred aged 54 many months before diagnosis of GCA. It was never investigated because it wasn’t bad enough and I can see why GCA was the furthest from the GP’s mind. It improved with steroids but never got back to what it was. At the time I can see why GCA was never suspected.

[Pebblegod in reply to SnazzyD]

Hi Snazzy. Thank you for your post. I do not know if these articles I read are relevant to my hearing loss. Who knows!! I am going to put it past my GP, but I am not holding much hope, as they have very little knowledge of PMR/GCA. Here’s hoping it will disperse from our bodies and we can get on with some sort of normal life

[Louisepenygraig]

A while back I did an online test from the RNID and was surprised to find I had slight hearing loss, especially after my husband did on and was fine but I can hear sounds he can't! I did begin to wonder though because I found I often didn't quite catch the words people were saying, especially if they were on my right. Anyway I eventually got my hearing tested properly and found I do have some hearing loss in my right ear at some frequencies. My left is more or less OK. I had hearing aids fitted on Wednesday but, TBH, I didn't notice much difference at that time. Everything just sounded normal, I realised maybe the only way to tell was to see how often I said 'pardon' because I couldn't quite catch something. Any way today, Saturday, we went out for the first time and I didn't wear them, one dropped out yesterday and I'm struggling with getting them in so I didn't want to risk losing them until I've checked whether they're covered by insurance. We went to a local cafe and then I did really notice the difference! My husband was sitting to the right of me and I did struggle a bit and had to say pardon several times. I think at my age (77+) it is age related though rather than PMR or steroids

[Pebblegod in reply to Louisepenygraig]

Hi Louisepenygraig thank you for reply.

My hearing loss happened overnight when I had a perforated eardrum. Before this happened I had almost perfect hearing. Usually aged related hearing loss comes on gradually.

Hope you get used to your hearing aids and I’m sure you find them beneficial. So maddening when you cannot hear what people are saying.

[whitefishbay]

Sorry for late reply. I have a vestibular schwannoma so mostly deaf in right ear. Of course I didn't want to wear hearing aids to begin with...they take getting used to but I now feel so lucky to have them (on the NHS - thanks). They are blue tooth enabled so mobile phone conversations are 10 out of 10 and also I listen to youtube at the gym and the sound goes right into my ears. Hope your ear problems are minor.

[Pebblegod in reply to whitefishbay]

Thank you Whitefishbay. Sorry to hear of your hearing loss. Luckily I do have some hearing in right ear but greatly reduced.

After everyone’s comments on this wonderful forum I am quite looking forward to getting my aids next week.

[whitefishbay in reply to Pebblegod]

It is what it is. Anyway lots more people have hearing loss than you think. I am 'out of the closet' with being deaf. In a restaurant I always ask for a corner table 'I'm deaf'. Start by using them for an hour...then build up. At first they itch but you will quickly get used to them. Onwards and upwards. 🦻