Ent problems

[jvilner]

Curious to hear everyone's experience with this. I had a lot of fluid that turned to glue ear. Suffered many months with pressure, hearing loss and swallowing problems. Tubes kept getting stuffed with secretions and didn't help until I went on meds. Now Ent says no fluid in ears-which I should be happy about but one ear is 90% ok. The other is about 70% and I hear my heartbeat in my ear and my voice echoes in my head. Only relief is when I lie down. My question is- if no more fluid then what the heck is going on? No nerve damage according to hearing tests. Did wegs do damage? How? Are there vessels in my ear inflamed from this disease? Input please!!

[carriej22]

I had lost total hearing almost in one year and was all messed up. There was no fluid in my ear either; and I don't know if they will ever know what actually happened but as I got better it eventually did too and now I can hear almost as good as before. They had a few theories, one is that the space that echoes sound or something was inflamed... But they were perplexed by it.

Not much help; but I was on a ton of prednisone and I am attributing the prednisone to fixing it.

[pberggren1]

With the glue ear, cavities can form and could be an answer to the echo voice and why you hear your heart beat. It could also be attributed to your sinuses. I would get some second opinions. The way you hear now could be permanent. It is prob just damage from disease activity.

[Dirty Don]

FYI: I have an inflated Eustachian tube, stuck open. I hear the ocean along with my voice(s){LOL}, and absolutely struggle in 'noisy' environs anymore...wind is a pain especially. Point is, E tube is supposed to open and close as in gulping...mine doesn't, can't be fixed easily or well as opposed to a stuck closed E tube. Just an idea on the echoes and stuff. Best of luck.

[jvilner]

@dirtydon: how does one know that their E tube is inflated?

[Alysia]

Hi Joyce,
the ENT docs in Israel are aweful please read this thread: http://www.wegeners-granulomatosis.c...-ent-docs.html

but I finally found the best ENT in Israel, one who saw about 10 weggies (which is huge, because most of them never saw any weggie, and even if they did, they didn't know that ).
his name is : Dr. Ro-ee Landsberg
he is accpting at Assutta, private hospital, at Ramat hahayal at Tel Aviv
ד"ר רועי לנדסברג, בית חולים פרטי אסותא, רמת החייל
the phone to ask for appt. : 037645464
you are going to him on private basis and get some of the money back from Macabie.
I wrote about him in my thread about ENT docs on page no. 2.
good luck !