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

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.

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

Let us know what happens Shannon.

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.

Has he every suggested a bronch Anne? Have you suggested a bronch to him?

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Originally Posted by pberggren1

Has he every suggested a bronch Anne? Have you suggested a bronch to him?

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I've tried. He doesn't respond like he's seriously concerned. I think I'd have better luck suggesting it to my ENT. He has done laryngoscopies on me before and I don't know know how much lower he'd be willing, as an ENT, to go.

Have you had breathing tests done in the past and recently? Is your breathing getting worse? How are you with stairs and hills?

I've had breathing tests done, but just with a little hand held tube thing in his exam room. I don't know if there's something more advanced I should be getting. I'm usually OK while at my appointment. Being in a flare just recently, I was a little worse than usual, and he upped the pred because of my complaints about breathing problems, in addition to having upped the MTX. I am definitely doing better since the med dose increases, though not out of the woods (are we ever?).

I haven't noticed any problems on stairs, and small hills like my driveway are OK as long as I'm not aware of anything in there that needs to be coughed up. I do need to try some longer walks that include small hills. So, it is hard to say. Right now, sitting here, I'm not having trouble breathing or coughing, though I don't think I'll ever be like pre-Wegs. Getting past this flare will tell me more, I guess.

Thanks for your attentiveness, Dr. Phil.

Sounds like you are doing very well then. You are probably fine in that department.

I've got a combination of Bronchial stenosis and bronchomalacia (as well as some stenosis of the trachea). I actually had thought all my symptoms were from the TS, but when it was found to not be as bad as previously thought they had to do a bronchoscopy and discovered the collapsing section of my Bronchs.

I was actually "twilighted" for mine and don't remember it even though I was awake. Honestly that weirds me out to this day...the idea that someone can completely blank a section of my memory, but I don't remember anything about the procedure.

I'm still a bit concerned about mine, as it took me all day yesterday to finally cough something up and have comfortable breathing. I'm also wondering if seasonal allergies are entering into it, as asthma has been a problem for me this time of year at various times of my life. And the pollens are already starting up here. But you'd think on 20mg. of pred and on MTX the allergy symptoms would be suppressed?

I'd say allergies would certainly aggravate it. If you have excess mucus it is going to clog in the constricted areas. I can totally sympathize as I've really struggled with breathing on my left side. Mine is weird as it's only on the left so that at least reduces the discomfort some as I always seem to have one good lung.

I spend hours every day on the nebulizer trying to cough things up. Some days I can't leave the house because a mucus plug does not want to come up.

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Originally Posted by pberggren1

I spend hours every day on the nebulizer trying to cough things up. Some days I can't leave the house because a mucus plug does not want to come up.

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Can that happen, though, even if one doesn't have stenosis? I don't know that I do (I should have clarified for Bob) and you, Phil, think I might be OK because I don't have a lot of trouble with stairs or hills, unless there happens to be a clog in there, which can take a long time to get rid of! However, I can still leave the house... I just won't be very comfortable. My doc, a pulmonologist, doesn't seem to think it likely that I have bronchial stenosis, or that I need to be tested for it. Guess I need to keep pressing him about it and/or get another doc.

This same doc had me quit my allergy shots once I was being treated for WG. And tends to think I can't be having allergy symptoms, asthma, etc., because of the immunosuppressants I'm on. But here it is allergy season and I'm getting more stuffed up. Allergy shots are a moot point now since I've lost so much ground, I'd be starting over if I resumed them. So if he will not talk about allergies with me I'll have to go to my ENT or someone else. I don't accept the implication that because I'm being treated for WG I don't have allergy problems or other issues, too.

You might have a tiny bit of scar tissue in your bronchials but it sounds like you don't. When was your last flare?

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Originally Posted by Shannon

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.

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This made me smile. :) :thumbsup:
Good luck with the investigations, Shannon.

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Originally Posted by pberggren1

You might have a tiny bit of scar tissue in your bronchials but it sounds like you don't. When was your last flare?

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My last flare was just recently and I'm technically probably still in it, so that could explain a lot. Right now, this morning, sitting here, I feel fine. This could change a little later in the day. Other days I wake up with a lot of stuff already collected in there.

It sounds plausible that I could have a bit of scar tissue in my bronchials without it being a severe issue. I just wonder what is getting in the way of the mucus coming up, or is it just that the mucus is super thick? Then why does it suddenly loosen up and I'm able to cough it up? You can hear it right before this happens, it gets a loose, rattly sound. The other day, this finally happened around 6PM in the grocery store, of course, and by the time I got out to my car, it was coughed up.

The airways get bigger as they reach the trachea.

Oh, that makes sense. The mucus finally breaks through into the wider area, where there is more air available to move it around and make it sound "rattly". It can be hard to tell, though, how far down the plug is in the first place.

It is probably in the larynx area where it sounds rattly.

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Originally Posted by pberggren1

It is probably in the larynx area where it sounds rattly.

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That sounds about right, since that's right before it comes up, and I guess the vibration of the larynx would contribute to the rattly sound.

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.

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Originally Posted by Jaha

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.

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Weird... pot holes! I wonder if I have them. I don't probably need a nebulizer, but I do find it helpful to inhale steam from a bowl of hot water, carefully, with mint or other herbs added.

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.

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Originally Posted by COWG

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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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.

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Originally Posted by COWG

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 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.

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Originally Posted by Donna88

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.

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If you do plan on getting the stent, make sure it is a removable stent.
Here is a video showing how it works.
https://www.youtube.com/watch?v=l7LPEqr2qaw

Thanks for that info, it looks easy, peasy. I just worry about coughing it up or punching thru to the aorta, I guess i'm just going to have to put my faith in the Doctor :(

Hey everyone, I'm new to the forum! I am so glad that I have found it!!

I have tracheal stenosis. I started in with it just a 1 1/2 years ago. But I was diagnosed with WG in 2008. I have been having surgery on my throat every 3 months for the last year and half. They were hoping to put a stent in but because of where my is closing off they cannot. And one of the reasons that surgery is done so much is because of scar tissue. The ENT said that the throat creates a lot of scare tissue, so even when the WG is in remission I will still have to have surgery done.

Now, when I first started having problems, I didn't know what was going on. By the time, I got it checked out my air way only a size of a straw! It was horrible. I have been in 5 comas just this year. A lot of it was because my throat was closing up and I would put it off thinking it was just a lot of mucus. Well, my case is actually a little bit of both. I have learned that if I cannot clear my throat very well or easily that it is start to close off again.

When they do my surgery, they do the balloon dilation and then use the laser to cut out the tissue. Then they inject the steroid. There have been several times when the doctors have thought I would need a tracheotomy but so far I have been able to come out of surgery ok.


Miracles do happen!!

Welcome, Miracles! I don't have tracheal or bronchial stenosis, so far, and am sorry you do. But I'm glad if you have to have WG and all its problems, you have found the forum. It's been a godsend for me in the 3.5 years I've had WG. I hope we'll hear more about your WG history, treatment, where you are from, etc. You might put a post in the New Member Introductions section and more might see it. Or maybe you already did, I should check! We are also here for the purpose of ranting and blowing off steam. I'm sorry you have to have surgery so often. You have a good attitude about it. I wish it could change to where you wouldn't need it as much. Well, keep us posted on how things are going.

Donna,

Is your doctor a vasculitis specialist? Because every specialist I've talked with has said that stents are absolutely a HORRIBLE idea with Wegeners. Velma just recently went through some serious procedures to get one removed after the scarring it caused nearly closed off the airway.

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Originally Posted by Donna88

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.

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From what I have read the stents are trouble. They break down and get imbedded in the lining of the tissue and to remove them can be a mess. I would look into other options. I'm looking into laser and dilation with steroid injection myself. I have surgery scheduled for dec 2. I've email my surgeon a few more questions but I think that it's a better solution for me than stents. I know there is a video that dr Langford talks extensively about stenosis but I don't know how to copy it here. If you go to the stenosis feed look under my recent posts another member posted it on my post. I'll try to see which one it was and repost here


P.O.W.E.R. Positive ongoing waves encourage remission

Here is the video: https://www.youtube.com/watch?v=BifdvorrUJ8


P.O.W.E.R. Positive ongoing waves encourage remission

Donna. I think you may need to go to the Mayo clinic. Just what I have read here on this forum. They seem to be the best. I have subglittic stenosis and as far as I know (CT on 26th) I don't have bronchial stenosis. That I would believe is a more difficult area to treat. I would seek out the vey best of the best in bronchial stenosis treatment and go there. Don't worry about the cost it will work itself out. But what Psyborg said is what I know about it as well. Just make sure you know your options before the procedure. ALL THE BEST!!


P.O.W.E.R. Positive ongoing waves encourage remission

Shannon I have been dealing with this since April of 2013. My doctors sent me from WVU to UPMC in Pittsburgh where they placed a stent. BAD IDEA. The stent became embedded and after posting a question on this site I found a wonderful doctor at the Cleveland Clinic who was able to get out the stent and now I am back to square one. My left main airway is still 60-70% closed every 4-6 weeks. Only solution is a bronchoscopy with balloon dilation and cutting away the scar tissue. I have had over 20 of these.

So I am trying a lung doctor locally who believes I have sleep apnea which makes it worse (was tested and waiting to get those results.) Also advised to switch to gluten free diet to keep immune in check. Nothing helps. It is a rinse and repeat thing for me. I am so aggravated and upset that this keeps happening. My auto immune doc has me doing the Rituxan every 5 months now along with methotrexate and prednisone for my meds. I have battled this disease for 20 years this month. It never ends. But I am hoping with this site someone will read this and know of a solution I can share with my docs. they have no idea it seems.
Good luck!

Hi Velma,

You may want to go back to Cleveland Clinic to see one of their wegs experts. Some of us on here (including me) see De Alexandra Villa Forte. Some others see Dr Carol Langford. Both are among the best in the world treating Vasculitis.

I have another bronch scheduled 10-12 and I am gonna see if I can talk to Dr. Langford too. I have to do something about this for sure. Thanks

I am also suffering from narrow trachea, it is really uncomfortable

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Originally Posted by luan22

I am also suffering from narrow trachea, it is really uncomfortable

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There is subforum here under the title "Tracheal Stenosis".