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    Default Bronchial Stenosis

    I met with my pulmonologist today because for about nine months I've had an increasingly difficult time coughing out congestion and it seems like it is getting thicker and thicker, and at one point completely blocking my airway. I didn't think it had anything to with my WG because I'm on MTX, Prednisone and Fluticasone (nasal steroid).

    He surprised me by saying that if a culture doesn't show bacteria that I need a bronchoscopy to look for a possible bronchial stenosis. I've had two bronchoscopy's already over the years and expressed my feelings of anxiety about the procedure to my doc because you're awake, your throat is numb, and they're sticking tubes down it (not a good combination when you're aware) so he is going to do it himself this time and heavily sedate me. Whew!

    He told me not to Google the info about bronchial stenosis because he didn't want that in my head (too scary I guess). So of course I got home and Googled it immediately because I'm more of a 'knowledge is power' kind of person. What I'm finding though is that while tracheal stenosis is a more common side-effect of WG that bronchial stenosis is not. In fact, very rare. So now I'm curious to know if anyone else on this far-reaching forum has been diagnosed, or treated for bronchial stenosis in association with WG?

    Thanks for any feedback! - Shannon

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    I have bronchial stenosis.

    I have had 7 bronchoscopies over the past 2 years. I have always been heavily sedated or put under for all of them. I never remember a thing when I wake up.

    I fortunately have one of the leading cutting edge lung docs when it comes to this stuff with Wegs. In fact I go for another dilation on March 7. I usually meet other Weggies in the recovery room when I have this done.

    Bronchial stenosis is rare in Wegs but I don't know the numbers.

    I would try and find an Interventional Pulmonologist. They are the cutting edge docs that deal with this sort of stuff. But let your local lung doc do a bronch first to see what he finds. If he finds no scar tissue then it could be something else. And he might refer you to one of the other lung docs.
    Phil Berggren, dx 2003

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    Thank you so much for the information Phil! Wow! 7 bronchoscopies! They kept me awake for the first, tried to for the second but my heart was racing so much they finally sedated me. HaHa! That was just mean leaving me awake now that I know you were knocked out for each one.

    It is very reassuring to know that bronchial stenosis is not something to be too terrified of since you have been going this for a while now. I'll let you know what they find out and what their plan is and see if it is consistent with what your doc does. I just need to get this coughing resolved. I fly a lot for business and people really shy away from you on a plane when you're coughing a lot.

    Have a great evening!
    Shannon

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    Let us know what happens Shannon.
    Phil Berggren, dx 2003

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    I am a little worried about tracheal or bronchial stenosis myself, but my doctor, a pulmonologist but not a WG specialist, never acts very concerned about it. I can go for hours feeling short of breath due to a bit of thick mucus stuck in there, but once it loosens and I manage to cough it up, I'm fine. But still I'm concerned. So I look forward to seeing how things go for you, Shannon. Good luck.
    Anne, dx'ed April 2011

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    Has he every suggested a bronch Anne? Have you suggested a bronch to him?
    Phil Berggren, dx 2003

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    Default Hope for bronchial stenosis?

    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.

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    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.
    Anne, dx'ed April 2011

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    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.

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    Quote Originally Posted by COWG View Post
    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.
    You can also do searches on stenosis, or I think it may even have its own topic listing on the forum.... check the main page and see. You can also send private messages to specific people, asking questions or whatever.
    Anne, dx'ed April 2011

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