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whatthewhat
06-23-2013, 07:40 AM
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

Psyborg
06-23-2013, 08:38 AM
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.

whatthewhat
06-23-2013, 01:05 PM
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.

drz
06-23-2013, 11:30 PM
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?

whatthewhat
06-24-2013, 12:39 AM
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

whatthewhat
06-24-2013, 12:42 AM
Also, her bff is coming for a visit, which to a 15 year-old may do as much good as seeing an MD!:tongue1:

Alysia
06-24-2013, 01:13 AM
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. :hug2:
I hope she will soon feel better.

annekat
06-25-2013, 07:13 AM
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.

gilders
09-21-2013, 01:43 AM
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.

gilders
09-21-2013, 01:59 AM
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.

annekat
09-21-2013, 02:30 AM
Hmm, I hope you don't have stenosis. I have a hoarse voice a lot, too, but it seems to be just mucus rattling around in my larynx. I can clear my throat and I haven't had the experience of not being able to talk until after I cough. I wonder if it could be just mucus with you, too. I get breathless, but mainly when there is mucus in my bronchial tubes or because I'm out of shape. The breathlessness, coughing, and my stamina in general have improved a great deal with treatment over the last 2 and a half years. I hope things improve in that way for you, too.

drz
09-21-2013, 02:02 PM
Stenosis is readily detected by scoping the throat but many other things can cause similar symptoms. Trouble swallowing is a more likely indicator of stenosis but any narrowing in our throat will increase frequency and severity of problems we have with excess mucous from the Wegs. The related coughing can be exhausting and also annoying too.

Barbara N
09-21-2013, 02:42 PM
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.
I don't know about stenosis but I have a very strange cough with a wheeze or whistle on the exhale. It almost always occurs at night, sometimes it can be so strong that I have a hard time getting a breath. After I have been up for a while settles down. It is definitely not in my lungs, there is no crap there it is all above chest level and in the throat. It is not like any cough I have ever heard before and sometimes gets to the point where I panic because I feel like I can't get any air.

annekat
09-21-2013, 10:07 PM
Barbara, I have also had some alarming sounding coughs and wheezes on the exhale. It also clears up when I get up and move around and am able to cough up some stuff, and it is also not from the lungs, though I think the mucus gets down as far as the bronchial tubes before it is coughed up. Some of the wheezing sounds so bad I hate for people to hear it. But that is usually a signal that I'm about ready to cough something up. What I cough up is usually small, and then the wheezing stops. I just consider this a part of Wegs and nothing to really worry about, and I hope it is the same for you. The panic of not getting air is scary, though, for you. I do remember that experience earlier on, and it helped to lean over against the back of a sofa or something, which seemed to help the stuff come up and out of there and relieved the breathing issue. As long as you feel you can work your way out of it, I guess it is OK, but do be prepared to call for emergency help if a crisis arises. I don't know how far you are from that sort of help.

LisaT
05-11-2014, 02:15 PM
I have sub glottic stenosis and many of the mucus and cough issues discussed above. I believe my stenosis developed gradually over a number of years, beginning with hoarseness and coughing up phlegm then eventually getting worse to the point that i was up half the night for months doing anything I could do breathe: nebulizer, tea with lemon and honey, cough syrup (active ingredient guaifenesen can thin the mucous so it's easier to cough up and doesn't get stuck; I got that tip from patients with cystic fibrosis), lozenges, cool mist humidifier or going outside for moist air, asthma puffer, oil of oregano, etc. Before the stenosis was diagnosed I had a couple of very frightening episodes when a dry sticky 'glob' (pretty much solid) got stuck in my narrowed throat and I couldn't breathe for a minute then started getting a small amount of air with lots of stridor/wheezing. Once we called 911 and they came and gave me oxygen, which helped until about an hour or so later when I finally coughed up the offending glob while in emergency. Pretty high up there as possibly the worst experience of my life. Another time I asked my husband to call 911 then stepped outside and coughed 'it' up. Now that I know how many Wegs patients have this problem I cannot believe I saw ENTs and rheumatologists for years before anyone figured it out. I wonder whether it's because the cough and phlegm came first and the stenosis later. I started having the choking episodes six or so years after the voice changes and cough began. Still, this disease can act very differently in different people. Just because mine may have developed slowly doesn't mean your daughter couldn't develop it in ten weeks. I don't know how a doctor could make such an unequivocal statement knowing Wegener's can take such different courses and at different speeds. I think a second opinion (and a scope instead of an assumption) is a very good idea. I almost forgot to add, the cough and stenosis settled down for a few months with imuran and prednisone. As I'm trying to go down to 5 mg prednisone I'm starting yo have some troubles again but not as frequent or severe.

LisaT
05-11-2014, 02:33 PM
Just realized that whatthewhat's post was almost a year ago! I guess she no longer needs the advice, duh... :blushing: Oh, well, I'll leave my reply in case it can help anyone else. Does anyone know whether her daughter did have stenosis or not?

annekat
05-11-2014, 03:06 PM
Can't answer about her daughter, but this is interesting to me because I have the same type of coughing problem, though not as severe as some of your episodes. It does get better or worse according to different times of year and whether I'm flaring, how much pred I'm on, etc. I know many on here have discussed having this problem whether or not stenosis was mentioned in connection with it. A lot of people just have post nasal drip that collects down in their bronchial tubes and needs to be coughed up. If things are dry and irritated it can be more difficult. I've wondered about stenosis but whenever I'm at the doctor's office, this is not really happening and my breathing seems fine. Other times, when I'm home, I feel asthmatic until something gets coughed up. Then my breathing seems pretty normal, unless there is more to cough up. It gets worse at night and I must prop up pillows to keep my head elevated. YES on the liquid guaifenesin! I've just recently been using this a lot, and it really helps loosen and thin the phlegm. DON'T get the kind marked DM, which contains dextromethorphan to suppress a cough, as that stuff has a nasty rebound effect. DO get what is called "tussin" or "expectorant" for chest congestion. It is available in house brands at Rite Aid and Walgreens for not a lot. It is the same ingredient as in Mucinex but the liquid form gets to the problem a lot faster with a much smaller amount. That has been my experience, anyway. I take 2 tsp. about every four hours and be sure to drink water with it. I hope it this will help someone.

LisaT
05-11-2014, 11:28 PM
I have a tendency to forget to take the guaifenisin until I realize things are getting dry and I'm coughing... But it usually helps in not too long. I wish they would make a sugar free chemical free version. When I take it a lot the sugar just add up. Anne, Won't your docs take a look down your throat to see whether there's stenosis? It's a fairly easy in-office procedure, at least as far as looking at vocal cords and sub glottic region. I guess if it's further down they need to do imaging, I'm not sure. I think mine is just sub glottic, but I didn't know enough to ask the question when I last saw the ENT. Next time I'll ask what, if anything, is going on in my trachea. I really feel like I'm learning so much more from the members of this forum than from my doctors. I also feel that they see how anxious I am and don't give me complete information or prognosis, ie. what to expect. As if what I don't know can't hurt me. Don't I wish! I guess they think I do t need to know unless or until I can't breathe. I will ask more questions when I see my rheumatologist Tuesday. I'll also ask him whether my ENT treats other weggies and whether he does the surgery (and if so, how many and with what success). The more I read these threads the more I see a trip to New York to see Dr. Lebovics in my future. Thank you all for sharing the details of your surgeries and treatments. It is so helpful!

annekat
05-12-2014, 12:02 AM
Lisa, I don't have a suitable Wegs doc, but am being treated by a pulmonologist, since my initial most alarming symptoms that led to dx were lung involvement. But that is long cleared up. Anyway, he does breathing function tests once in awhile, must be aware that stenosis can be an issue, and I've mentioned it a couple of times, but apparently he thinks my breathing seems good enough to rule it out. I think the day will come when I will have to find a more suitable doc, and team of docs, with more WG experience, to oversee my case. I've lately learned more from my ENT about what is going on with me. He has run a scope into my throat in the past but mainly to look at the subglottal area, when I had a lot of mucus buildup there, before anyone ever thought of Wegs as a possibility.

LisaT
05-12-2014, 03:40 AM
Anne, depending how long it's been since he had that look down your throat, you may want to ask your ENT to look again. They saw nothing but mild irritation/redness and queried autoimmune disease based on that for a good few years before I developed subglottic stenosis. I really hope you don't have it, but some of what you describe (feeling asthmatic until coughing something up etc.) is familiar to me. If you did have it, best you find out and start monitoring and/or treating it sooner rather than later. Does anyone else reading this feel as though the stenosis varies with posture, foods and drinks, stress etc? Mine seems way worse at some times than others and I'm trying to figure out what triggers the worse episodes. I know that for me, wheat and dairy are definite triggers and I can't have either. I'm wondering about sugar after someone else posted (can't remember where) about that making theirs worse. I also notice it when I eat movie popcorn even after ensuring it has no butter. So, I'm thinking greasy oils that coat my throat are another culprit. I'd be curious to hear whether others have known 'triggers'. I feel like muscle tension and anxiety can make my throat either more closed or feeling more closed as well...

pberggren1
05-12-2014, 06:11 AM
Lisa, what is Guaifenisin?

annekat
05-12-2014, 11:31 AM
Phil, guaifenesin is the ingredient in Mucinex tablets and in the liquid expectorant cough syrups, also called "tussin". It comes from a tree bark. I mentioned it to you on Facebook once. I have found recently that the expectorant syrup works faster and better for bringing up mucus from the bronchii than do the tablets. However, the Mucinex tablets do come in a 12 hour time release formula and are also good to take. And I've just discovered that Lisa is right, there are artificial sweeteners and that kind of crap in the syrup, at least the commonly available brands. I'll bet there are versions available at places like Super Supplements that have natural ingredients and nothing artificial, but I'll also be they are quite a bit more expensive. Whatever form of guaifenesin you try, I've always heard you'll get better results if you drink lots of water.

LisaT
05-12-2014, 12:39 PM
I found one natural brand and it tastes so bad I can't swallow it… I still take the kind with sugar as I feel like sugar can't be as bad as fake sugar chemicals. I have the mucinex too but never take it… I have so many pills to take every day I'm already picking and choosing between which supplements to take most days. After a certain number I start choking on pills. I'm sure some of you can relate… sigh.:sad:

annekat
05-12-2014, 01:18 PM
I found one natural brand and it tastes so bad I can't swallow it… I still take the kind with sugar as I feel like sugar can't be as bad as fake sugar chemicals. I have the mucinex too but never take it… I have so many pills to take every day I'm already picking and choosing between which supplements to take most days. After a certain number I start choking on pills. I'm sure some of you can relate… sigh.:sad: I do know what you mean... I was taking the Mucinex time release for years but quit because it was costing me around $50 a month...can get the cheaper generics but they aren't time release, plus I, too, got sick of taking the big choking pills. i wouldn't mind the syrup with sugar but I saw the stuff from Rite Aid has aspartame or sucralose and high fructose corn syrup. I hate artificial sweeteners so will shop around and read labels a little better next time.