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Thread: Stenosis symptoms?

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    Default Stenosis symptoms?

    Hi all,
    I apologize if this is addressed somewhere else...
    I am wondering if those of you with subglottic, or tracheal, stenosis could tell me how quickly you think it developed in you & what your symptoms were.

    My daughter is having trouble breathing, and has a weird cough, although according to both the pediatrician & the ENT's PA her lungs sound clear. We have referrals to the ENT proper & a pulmonary specialist. I grew up with "severe chronic asthma" and her breathing difficulty is not anything I'm familiar with. However the ENT's PA said stenosis would have been diagnosed during her March (initial diagnosis) bronchioscopy.
    thanks,
    wtw

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    The stenosis definitely gives you a weird cough. As I understand it the weezing from Ashtmas is on inhalation, that from stenosis tends to be on exhalation. Mine is in the Trachea and Bronchial tubes. Have her take a very deep breath and breath out very hard. If she has a weeziness when breathing out I'd say you are probably on the right track.
    ~ Bob

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    Thanks, Bob. I had her breathe in as deeply as she can, and there is no wheeze in exhalation. The inhalation (deep) is very uncomfortable for her, and triggers the weird cough (a short, dry cough.) She has no other allergy-type symptoms either. This is about the 10th day of it, and she is exhausted.

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    Quote Originally Posted by whatthewhat View Post
    Thanks, Bob. I had her breathe in as deeply as she can, and there is no wheeze in exhalation. The inhalation (deep) is very uncomfortable for her, and triggers the weird cough (a short, dry cough.) She has no other allergy-type symptoms either. This is about the 10th day of it, and she is exhausted.
    Trouble breathing is very uncomfortable and exhausting.

    What are doctors recommending to assess and /or treat the problem?

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    Hm. Well, I called her very good rheumy team, and they said start with the Pediatrician. This complicates things - we just moved 5 hours away from where we used to live (rheumy team will be the same but all other docs will be new.) Pediatrician was great, said a nebulizer couldn't hurt while we kept on looking for a diagnosis - and it has in fact helped. The next step was to an ENT - she saw the PA, who I am not convinced is a Weg's expert - the PA is the one who said that stenosis would have been noticed during the March bronchioscopy and that it doesn't develop over a 10 week period. We have a referral to the ENT doc proper. Plus the PA has prescribed a nasal spray & an antibacterial nasal cream (to use instead of Ayr) and took a nasal culture, because her left nostril still looks (lively, is the word I'll use because I'm no doctor!) from her week of bloody noses a month ago. Now we have a referral to a pulmonary specialist

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    Also, her bff is coming for a visit, which to a 15 year-old may do as much good as seeing an MD!

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    Hi wtw,
    I dont know anything about it, I only want to send big hug to you and to your daughter. she is lucky to have you.
    I hope she will soon feel better.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Some of us have dry coughs, I don't know if they are all the same.... knowing Wegs, I doubt it..... anyway, these dry coughs that SOME of us have are not symptoms of stenosis. For many of us with sinus damage, there is a constant dripping of excess mucus from our nasal cavities into our bronchial tubes, where it collects and eventually causes some difficulty breathing, sounding like asthma, and we try to dislodge it by coughing. Eventually, for me anyway, something is coughed up and I get relief. The wheezing I get is on the exhale, and it can sound pretty nasty. People who hear it may be alarmed. But when it's that bad it usually means I'm about to have a productive cough. I've mentioned stenosis to my pulmonologist and he doesn't think I have it. My lungs always sound clear to him, though I'm not sure if that's an indicator, since the stenosis occurs further up. But he thinks my breathing function is OK. Anyway, I used to be worried about stenosis but now am not, as I'm coughing a lot less than I was and mostly past the breathing issues. With your daughter, though, I would follow your inclination to get second opinions and make absolutely sure. I would probably not take the word of a PA as gospel truth, even if he or she is a good one who knows something about Wegs. It will be interesting to see what the ENT proper and the pulmonologist say. Be sure to let us know.
    Anne, dx'ed April 2011

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    annekat's coughing symptoms sound like mine. It tends to be worse through the night and when I wake up - I always end up with lots of crap I need to cough up. During the day it feels like there's plenty of crap to cough up from my chest, but it seems to be a dry cough. My coughs also seem weak (if that makes sense) even if I take a deep breath in.
    As far as I know, I'm not suffering stenosis, but only because I've not heard of before I joined this forum. Having suffered for 19 years I thought I knew all the symptoms of WG, but not quite.
    Diagnosed April 1995

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    Just read up on tracheal stenosis.
    After my first relapse my voice became much hoarser. I still have the hoarseness and sometimes when I'm about to talk, nothing come out untill I've coughed a few times.
    I'm now thinking that after that first relapse I most likely have tracheal stenosis, but fortunately not a bad case of it. I do get breathless, but I think that is down to my heart failure rather than stenosis.
    Diagnosed April 1995

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