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Yvonnea
03-11-2016, 10:26 PM
Hi folks.

Just querying something.
I was first diagnosed with WG in ears and lungs 12 years ago.
Have been in medicated remission for past four years. But over last couple of months, I have definitely noticed something stirring again.
Have to use sinus rinses every day and headaches. Went to ear Doctor as they have been fitting me with little plastic ear tubes, and I am planning on taking a long haul flight next week so wanted to get checked out.
The left ear is fine. But she said she could not place one of the tubes in the inner right ear as it was blocked. And she said the blockage was definitely not wax.
Could this blockage be inflammation? Or does something harden in ears because of WG? I have constant ear ringing and hearing loss in the right ear but it has not gotten any worse over the past four years. I am Irish but living in Sweden and speak OK Swedish, but my Doctor is Russian and speaks poor Swedish and no English, so think somethings are lost in translation. She also has a very poor bedside manner....she has a very deadpan face that always looks like its bad news. Just freaking out that it a tumour behind the ear...at least if it is inflammation caused by WG it would be a case of better the devil you know. Also because we are going on a dream trip to Australia next week....this couldn't come at a worse time.
Waiting to get an Xray, but thought I would ask you in case you could shed a light.

Thanking you
Yvonne

Pete
03-12-2016, 01:37 AM
If you think things are getting lost in translation, they are. It's time to get another doc that you can communicate with easily - and trust more fully.

Hope the trip goes well.

debra
03-12-2016, 07:09 AM
Yvonnea, hello. In my opinion, absolutely! Inflammation is wegeners and the ears are effected a lot as I'm sure you know... My ears especially under stress will become blocked, hearing will go partially then pop back, sometimes hours later, sometimes days... My last episode lasted a few weeks, before hearing returned, and I was pretty freaked thinking my hearing was gone in the left ear... Thank God it popped back... I however know little about the tubes, so can't say only what I've learned here, but not enough to comment... Good luck! Debra...