any info on treatment of trachea stenosis

[ian anderson]

hi weggies im newbie recently been diagnosed with trachea stenosis its pretty frightening to have just wondering if anyone has had it and how they were treated

[elephant]

Welcome Ian, do you have any other symptoms? I think Jan could give you some information on trachea stenosis. Are you seeing a Rheumatologist that specializes in Wegeners disease? Are you on prednisone? Cytoxan? We are here for you. This disease is frightening, that is why being on this forum you will get support and alot of good information.

[JanW]

That's true, Ian -- I have subglottic stenosis that extends into the top two rings of my trachea. Stenosis involving the subglottis is the most common kind among us weggies, although in some cases, like mine it can extend into the trachea. How were you diagnosed and what are your current symptoms? Have you gotten a sense of how 'closed' you currently are? I had surgery and balloon dilation done by Dr. Bob Lebovics who is expert in this area -- one of only three in the world who do it in this way. He's done 100s of cases. I am two months post surgery and feel 100 percent better. I saw the doc yesterday and he pronounced me fully open, which is such good news -- we thought we would be scheduling the next surgery but he is willing to play it by ear and see me in six weeks to see if there has been any closure. Wg patients can typically expect to have this surgery done 3 or 4 times in their lifetime, with him anyway.

What drugs are you on. I'm only on mtx, 15 mg/week and my numbers are trending in the right direction (more slowly than they would be with pred onboard of course but with no side effects so I'll take it).