It is probably in the larynx area where it sounds rattly.
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It is probably in the larynx area where it sounds rattly.
I had my 1st bronchoscopy in Nov, with just valium. It was done by a pulmyonogist, I went to an ENT and he referred me on. The report was that I didn't have stenosis, but he said I had like pot holes filled with mucous. He called it chronic bronchitis. I don't really know if everyone has pot holes,but I guess I did. I'm like Phil I usually have to use my machine to cough it up.
My husband had a treatment done for bronchial stenosis, where they ballooned it out and injected steroids, (broncotophy??) He felt better for only a few weeks. He is not well now and we are wondering what kind of treatment/relief others have had. I was trying to reply to Phil but don't know if these comments will be attached to his.
Are these treatments just temporary fixes, or do they help in the long run?
We are new to this forum, and are really hoping to find some info as we don't know anyone else with WG.
He is presently on 50 mg pred and finished 1 treatment of RTX. He is also doing Cytoxan infusions. His 12 year w/ WG.
If you use the "reply with quote" function from the bottom of Phil's post, your comments will be attached to his. He knows a whole lot about this subject. I'm sure he'll be onto it. I don't have stenosis myself.
Thank you Anne. I keep logging on here, so desperate to hear from anyone who knows anything.
Although we've been at this for 12 years, this is one of the worst he's been. Very labored breathing,
and we are not sure if another broncoscopy will help.
If the stenosis develops early as part of the initial symptoms of Wegs any surgical fix might be long term as the treatment gets the Wegs under control and the stenosis does not return. Many of our initial Weg symptoms like kidney damage, lung damage, hearing loss, skin eruptions, etc seem dormant for a long term once treatment of Wegs is successful in attaining a drug induced remission. However, many symptoms like sinus problems and others might persist as residual symptoms of Wegs and flare up again or even worsen over time. Only time will tell which category his stenosis falls into but lets hope for a long term fix and a quick remission of all symptoms.
My Doc wants to put a stent in to keep my Bronc Stenosis open...every Doctor has told me not to do this. Has anyone got this done, mine would be in the left bronchia over the heart area.