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carrottop50
09-20-2014, 01:18 AM
I have lost over 25% of my hearing in both ears. The doctor said it was nerve damage... Does Wegener's cause nerve damage to the ears? Thanks.

annekat
09-20-2014, 01:46 AM
I got nerve damage in my left ear early on from the severe ear infection that was the start of my Wegener's. But it was blamed on the infection at the time, since WG wasn't diagnosed until 2.5 years later. Both ears suffered loss, but the right was said to be conductive, not nerve damage, and got better, almost normal again, with time. The nerve damaged ear also got better with time, as some of that loss was also conductive. But it has always had a hissing noise since the damage. Then, as WG progressed undiagnosed, while I was being treated for a succession of sinus infections, the hearing in both ears declined again to where I needed hearing aids. The hearing has improved again in my left ear, the nerve damaged one, and hears very well with the aid, despite the hissing sound. The right ear, which was the good ear originally, has completely deteriorated due to WG, the ear drum caved in and eroded away, and the small bones behind it also eroded. I can still hear some with the aid, but not nearly as well. There has also been some lingering outer ear infection in this ear. I use strong antibiotic drops in it three days a week. I've also blamed the issues in this ear for some dizziness and vertigo. It is all getting better with the ear drops and periodic cleanings of wax at the ENT. I'll never get my former hearing back in either but am happy with how the left ear, the nerve damaged one, is doing with the aid. So with 25% loss from nerve damage, there is hope it won't get any worse for you with proper WG treatment, but I don't think the nerve damage can be fixed. I hope you won't have the further problems that I did. And to answer your question, I guess my conclusion is that nerve damage in the ears can be caused by WG or by an infection alone.

Alias
09-20-2014, 05:22 AM
Medscape: Medscape Access (http://emedicine.medscape.com/article/858001-overview#aw2aab6b4)

See attached regarding otologic manifestations of WG.

My audiogram showed severe impairment in one ear and near normal hearing in the other, with some component of nerve damage but mostly conductive loss. I thought I was literally deaf in the bad ear, but it turns out I have good residual hearing, and I am excited to be trying out my hearing aid this week. The ENT who performed a mastoidectomy said the middle ear structures were entirely encased in inflammation and compressed, and looked like a piece of chewed gum. (This finding still did not lead to diagnosis, however.) Anyway, the attached seems to confirm that nerve damage can indeed be caused by WG, but that it is sometimes reversible.

gilders
09-27-2014, 07:31 AM
I am excited to be trying out my hearing aid this week.

It took about 18 years after first been diagnosed with Wegener's and suffering from hearing loss for the NHS to decide an hearing aid could be beneficial for me. I received it last July (2013) and it has been a great improvement. Almost eliminates my tinnitus and has helped a lot with deafness in left ear.

Let us now how you get on with it. Some noises such as toilet flushing and packaging (bags of crisps(UK)/chips(US)) sound unnaturally loud at first. If there seems to be a slight delay from when a noise occurs or echoing, it usually means the hearing aid sensitivity is set too high (you can turn it down). This usually show up when you look at someone when they're speaking.

annekat
09-27-2014, 08:33 AM
I'm very happy with mine, as well. Most of the initial problems such as those noted above have disappeared entirely or else my brain has trained itself to ignore them.

Alias
09-27-2014, 10:49 AM
I'm actually finding the "training" period kind of frustrating... and tiring. I was warned this would be the case, that my brain would have to get used to receiving signals from the damaged side again. I definitely notice the improvement in crowd situations especially, and it does seem to mask the tinnitus somewhat. I will meet with the audiologist again next week for some fine tuning. I'm sure it will be a while before I adjust and start to get full benefit of the device. The technology is actually pretty amazing. I had no idea how sophisticated it is until I had my fitting appointment. Anyway, I'm encouraged by the result so far but hoping for additional improvement.

annekat
09-27-2014, 11:35 AM
I was told by a smart mouth whose husband wears hearing aids that I would never get used to them! I told her off right then and there that it was a negative attitude to convey. I have gotten used to them. Her husband has a worse hearing problem than I do and stays home all the time, so doesn't give himself a chance to get used to the crowds, restaurants, etc. The last time I was in a noisy restaurant, I did not have any problem and didn't really think about it. I suppose the acoustics of some places could be worse that way than others, though.