JanW
03-06-2010, 08:43 AM
I am launching this thread in my new official position as subglottic/tracheal stenosis nag. Yes, I know that there is a tracheal stenosis section, but some of my new WG friends may never had heard this term or may not know that the asthma or brochitis that the GP has diagnosed might actually be a windpipe problem that he or she is not aware, and is not aware is symptomatic of WG.
My story briefly is that I woke up one morning in 2005, and immediately realized that something wasn't right. In a couple of months I was diagnosed with adult onset asthma. Fast forward to four years later (asthma not much improved despite many meds, allergy shots and reflux meds...only thing that seems to work is pred...first clue), and a throat CT shows a narrowing of the windpipe. Pulmo then orders a follow up on the radiologist's suggestion that WG be explored, and dismisses it because on chest CT the trachea looks clear (for those following this still -- the trachea and the subglottis are not the same anatomy). Six months, one saddle nose and one visit to WG expert ENT made clear that not only was more airway closing, but if it closed a little more it would not be "compatible with life." Obviously, by that time I had a rheumo in on the care and the official WG diagnosis was made.
I had the surgery done yesterday (a balloon dilation with special incision that this doc and two others in the country do), am home today and feeling 1000% better. Not even a sore throat. So if anyone has questions for me about breathing problems, ask here. And as Sangye suggested, I will try to get the other doc's names for our members around the country.
My story briefly is that I woke up one morning in 2005, and immediately realized that something wasn't right. In a couple of months I was diagnosed with adult onset asthma. Fast forward to four years later (asthma not much improved despite many meds, allergy shots and reflux meds...only thing that seems to work is pred...first clue), and a throat CT shows a narrowing of the windpipe. Pulmo then orders a follow up on the radiologist's suggestion that WG be explored, and dismisses it because on chest CT the trachea looks clear (for those following this still -- the trachea and the subglottis are not the same anatomy). Six months, one saddle nose and one visit to WG expert ENT made clear that not only was more airway closing, but if it closed a little more it would not be "compatible with life." Obviously, by that time I had a rheumo in on the care and the official WG diagnosis was made.
I had the surgery done yesterday (a balloon dilation with special incision that this doc and two others in the country do), am home today and feeling 1000% better. Not even a sore throat. So if anyone has questions for me about breathing problems, ask here. And as Sangye suggested, I will try to get the other doc's names for our members around the country.