Hearing problems from Wegeners GPA

[poppet2]

I am wondering if anyone else has had to have grommets fitted as a result of ear damage caused by WG. I was diagnosed in June 2014 and was actually fitted with grommets before WG was even diagnosed as the cause of my problems! They didn't work for too long and since then I have had another two lots of grommets fitted but unfortunately they have come out again, and I am back to wearing hearing aids. On my last visit to ENT a doctor has now offered to fit long term grommets (T junction) for me, even though the original consultant did not recommend them as he said they could cause frequent infections. I am wondering if anyone else has experience of these and could give me some advice as to what to do. Thanks.

[Nadine99]

My husband had grommets fitted for fluid after being diagnosed with WG/GPA. We were told they would work themselves out after 6 mths and they did. He says his ears always sounded as though they were picking up radio signals. He now has a hearing aid. Don't know about the T junction ones. Good luck.

[poppet2 in reply to Nadine99]

Thanks for replying Nadine, I have a little while yet to decide.

[Nadsrziguix in reply to Nadine99]

That is exactly how my ear feels like it is picking up radio signals and sometimes when there is sounds closer to my ear the louder the noise will get, along with the deafness aswell, I thought it was just me.

[Martinf1]

I has grommet in left ear after ent specialist try different types on treatment then In 2013 was diagnosed WG it lasted for 18 months then has T tube in which came out after 6,to 9months because infection that took 8 weeks to clear ent give me the option to have another T tube or try hearing aid as would be less chance of infection I am in my tenth week with the the aid and has made a big difference if it wasn't for the bad infection it has I think I would have opted for another T tube Goods Luck

[poppet2 in reply to Martinf1]

Oh I was hoping the T junction ones would last much longer as doc indicated a few years. Did you have to have them removed because of infection or did they fall out? I just wonder if I will cope with two hearing aids permanently. Thanks for your info Martin.

[Martinf1 in reply to poppet2]

My Tube got pushed out by a bad infection took along time to clear then to hold in ear drum has healed over

[SusanCh]

Hi I have had grommets fitted in both ears due to problems with build up of fluid due to GPA. I had them first in 2004 when diagnosed. They have come out a few times so I now have long term t tubes and the last ones have been in maybe 5 years. I also wear hearing aids in both ears. I get regular infections but was told that this is something that can't be helped with the illness. One grommet has recently fallen out so I'm waiting to see what happens next. If the hole heals up I know from past experience I will be in terrible pain.

Good luck. Sue

[poppet2]

Thanks for replying Sue, this sounds a bit more encouraging. Can you tell me if you have had to take any particular care with your ears - keeping water out, or any problems flying etc.? Or anything else you think I should know. Thanks, Ann.

[Nadsrziguix]

Hi I have had had exactly the same problem I became deaf on the right ear at the age of 16/17 and had two grommets put in since thegb despite being too old for grommets they did not question it. The first one fell out so I got a second one put it and did not do anything, since when five years later I've been diagnosed with GPA and since have the hearing problem plus very loud buzzing noises constantly in my right ear. I think it is definitely caused by the disease however not sure how to cure the ear being deaf or ringing.

[poppet2 in reply to Nadsrziguix]

Hi, Sorry to hear you are having problems too. I have recently had some T Tubes fitted in both ears and they are working great, making the hearing aides completely unnecessary. I can only hope they will last for many years but unfortunately there is no guarantee. Hope you will get some relief soon.

[Nadsrziguix]

Thank you I still here a really bad ringing noise in my ear but hopefully will clear up or I can get something such as a hearing aid to help

[Farley1]

I started to lose my hearing. I had grommets put in and totally lost my hearing shortly after. I started prednisone a month after and my hearing slowly started to come back. I was told to keep the grommets and one was replaced 6 months later. Now 9 months later my hearing is 60 percent and I have one grommet still in place. Not sure it really does any thing.