View Full Version : Tracheal stenosis and remission

06-29-2010, 03:40 AM
Can anyone tell me if they have achieved remission with WG when it effects the trach?
The data I find online can be quite concerning and I would rather believe it is more attainable than not...call me self but I wanna see my kids grow up

06-29-2010, 04:23 AM
LisaMarie - I honestly don't think that one affects the other. Both tracheal and subglottic stenosis do not tend to track disease progress. For instance, my inflammation results are now normal and my P3 are going down rapidly, but I am still reacquiring scar tissue around my subglottis (hopefully not too quickly). I feel fine.

I think that whether you get into a medicated remission or non-medication remission you can expect to live a long time. As for your trachea, how you do with that probably largely depends on the skill and expertise of your surgeon as well as whether or not he is a WG expert and up on not only how to fix stenosis -- which occurs in other diseases and for other reasons -- but treating stenosis caused strictly by WG. I'll say what Sangye, Jack, Elephant and others all say, you need an expert -- this is my main symptom and I'm very fortunate to have one of the leading experts treat me. These a tricky, intense surgeries (so says my doc) where the risk of creating more damage (i.e. scar tissue) is very, very high. All this doc ever does is pound on me about how important it is to come to him if I even feel a tickle in my throat, and how he got to be so good just by seeing so many damned Weggies (it's his sole area of research).

06-30-2010, 07:09 PM
I agree with Jan here.

When I am in remission, I still have the subglottic stenosis (albeit a lot better). I feel fine too. Things will get better for you LisaMarie. x

07-04-2010, 06:01 AM
Lisa Marie,

Its attainable! Think Positive! I agree with Jan, One does not affect the other, stenosis comes on because of the WG, but is a symtpom all by itself. I know that no matter how good I get, I will always have the stenosis that I currently am afflicted with. But, I am happy becuase I can live a full life with what I have and the WG is under control. (for now)

07-05-2010, 01:26 PM
Thanks for the support...I hate the symptom ... I have other sites per the doc...so it was a blessing that the stenosis ..otherwise ...who knows when they would have found it....I get an echo on Tuesday to recheck my heart :...having irregular rate and chest pains...also came up with left lower lobe pnuemonia....see the WG doc on Friday..hopefully get some answers on a plan of care.....have a great 4th of July

07-05-2010, 02:36 PM
Lower lobe pneumonia? How did they find that? Does it look like "atypical" pneumonia? Wegs lung involvement often gets labeled as pneumonia.

07-06-2010, 12:24 AM
Hey, coffeelover: where are you with your trach? Sorry, I don't remember if you got it removed yet or not?

07-06-2010, 11:09 PM
Lower lobe pneumonia? How did they find that? Does it look like "atypical" pneumonia? Wegs lung involvement often gets labeled as pneumonia.

I opted not to do a chest xray till I see the WG doc on Friday.....I have had alot of xrays and CT's in the last few mopnths ...Have Bactrim DS to take for infection...dx with Left lower lobe by assessment and symptoms.....Hoping it is not in my lungs too...will wait and see...last chest xray and CT were ok ....Will keep you all posted....thanks for answering my questions...ya ll help me stay sane

07-07-2010, 01:46 AM
Hope the WG doctor can get you on the right track soon. Don't blame you on the xrays.

08-06-2010, 10:10 PM
I too have tracheal stenosis, apparently still pretty mild per the tracheal scope on Wednesday (35-40%)...so at this point there is nothing they need to do with it. I can't imagine 80% though as it really disturbs my sleep already at 35%. Does the progression of the stenosis slow or stop if you get into remission, or is this something that will continue to progress? Just curious on that.

Of the symptoms I have the stenosis is the most annoying, followed by the dizzy spells, but I'm not sure the dizziness isn't related to the Prednisone.

08-06-2010, 11:27 PM
Psyborg, is your blood pressure low?

08-06-2010, 11:29 PM
It was previously, but is normal now for the most part. When I was completely untreated in May it was running 80/50 to 90/55...pretty bad from the reaction at the hospital. Not feeling nearly that bad now with the Prednisone.

08-07-2010, 01:09 AM
Do you have a blood pressure cuff? You might want to pick one up at Walmart, CvS local pharmacy....just to keep an eye on it. I have three blood pressure cuffs machine. Little nuts...

08-07-2010, 02:39 AM
I think that the WG triggers the stenosis but then the stenosis takes on a life of it's own. My disease is well controlled medically (not remission yet) but my stenosis is growing back.

08-07-2010, 02:39 AM
Let me join elephant in a >nag< about getting yourself a machine to measure your blood pressure at home. Record your results in a notebook. Some machines even track measurements for you- look around. For a relatively small amount, you can see for yourself if you are trending up or down, and, when you go to doctor's appointments, they generally are appreciative top have the extra data, though they'll have their nurse check yoour blood pressure anyway. It's easy to do, without having to worry about the whitecoat syndrome (if you are one of those people whose blood pressure elevates in the doctor's office). It is just one more tool to assure you are making progress toward your health goals!

08-07-2010, 02:42 AM
Jan ~ Is it true mechanical injuries can cause it, too, for example, if a person goes through examinations where medical tools are introduced to the body through the throat?

08-07-2010, 04:53 AM
Yes. In fact the first question my old ENT asked was whether I had been intubated as a child. I don't think this kind of injury occurs so much any more but I was born in 1965.

08-07-2010, 05:12 AM
Same year I was born, 1965 rocks! :)

08-07-2010, 07:36 AM
I do indeed have a blood pressure cuff. I don't track it as much as I should I don't think though. Probably about the same as my blood sugar levels.

Completely off topic...does CTX normally cause some dizziness? My head is wonky as heck today...that and I'm getting spells where I feel intensely warm...been cold so long that I forgot what it's like to feel overly warm :)

08-07-2010, 09:01 AM
Let your doctor know, it could be a combo of medicine side effects or other medical condition going on. Just give him/her a call.

08-07-2010, 09:51 AM
I'll give it a shot :)

08-07-2010, 11:08 AM
Good! I had a similar experience, brought it to my doctor's attention, and he reduced my dosage. I didn't feel "over-dosed" then!

08-07-2010, 01:21 PM
Ctx can definitely cause you to overheat. Common side effect. Check it out with your doc, but there's not much you can do about it.

08-07-2010, 08:18 PM
I think I just need to get "acclimated" to the drugs. I felt fine after I rested up a bit last night. I was obviously a bit loopy...I think I asked the same question twice :)

08-07-2010, 10:50 PM
LOL-- No worries. Either I or someone else probably answered it twice and never realized it! :D :D

08-09-2010, 10:32 AM
I think that the WG triggers the stenosis but then the stenosis takes on a life of it's own. My disease is well controlled medically (not remission yet) but my stenosis is growing back.

My stenosis starting coming back also, but only after I tryed to cut down my pred levels too low. I am getting by

08-09-2010, 11:34 AM
Coffeelover -- I assume that you are taking the pred for lots of reasons, but it likely has no effect on your stenosis one way or another. It has never been proven to affect stenosis.

09-04-2010, 03:33 AM
Just bumping this thread up to say that I have officially made it six months without having to have a second stenosis surgery, which is a big milestone for me. Saw Dr. Lebovics just today and he says that it hasn't scarred up any more than at the last visit in July, when it was at 6.5 to 7 mm, which is a little less than fully open. He says that he would probably look to repeat the surgery when I am at about 5, but for the first time admitted to me that "very occasionally I have patients who are one and done." Hoping I am one of those! He definitely thought he would have done the second surgery by now.

He also reconfirmed that when/if/how quickly, it closes has nothing to do with the mtx, ANCA titers, bloodwork and all the rest of it ('with all due respect to your rheumy' he added slyly).

09-04-2010, 03:50 AM
That's great news Jan. I can't imagine what it must be like having to face repeat surgery for an unknown period of time. Hope thing continue to go well. :)

09-04-2010, 04:00 AM
Wow, Jan I am so happy for you! I hope it'll be "one and done" for you. Why not?

But you know it is interesting that it hasn't closed as expected since you've been on mtx.... :wink1:

09-04-2010, 04:26 AM
Jan that is wonderful news! How is your foot/ankle doing?

09-04-2010, 10:29 AM
Well, you know Sangye, the old saw is that if you have two rheumys in the room you have three opinions -- I wonder what the saw is if you have a rheumy and an ENT?!

Clearly Lebovics trained with the 'giants' as he would call them himself -- Langford, Hoffman, Specks, and, as I have said previously, there's more of an more emphasis on the idea that immunosuppressants don't maintain remission and that once you get into remission it's essentially the luck of the draw whether your maintain it. I don't necessarily think that my rheumy buys that, and, in fact, just because something hasn't been proven, doesn't mean it isn't true. In a lot of ways, it's easier for the ENT to believe that isn't it -- he's the guy going into the fix the damage after the fact -- preventing the damage really isn't in his wheelhouse, and, in our cases, he doesn't have to think really hard about how the damage got there in the first place. He just has to be sure that nothing he does will make it worse.

Elephant -- my ankle is improving. The upped mtx seems to be working, and PT is continuing to break down scar tissue. It's truly my only wegs symptom at this point, and as Lebovics ran through the 'classic' symptoms with me this morning -- I really felt damned lucky so say I had none.

09-04-2010, 12:56 PM
That is wonderful to hear that you ankle is so much better. The ankle will be back to normal soon!

09-04-2010, 02:06 PM
Both of my ENT's are very aware of the processes of Wegs and are very compassionate towards me. They always want to be kept up to date of my progress and symptoms.

09-05-2010, 12:47 AM
I hope so elephant.

Phil - WG sinus problems probably require medical intervention as often (if not more often) than surgical, so it's not surprising that if that's where most of your ENT trouble lies, they will track the systemic progression of your WG rather closely. I've only ever required surgical intervention, not medical, for stenosis.

09-05-2010, 05:48 AM
I've never had surgery on my sinus or nose except when I was diagnosed and the ENT took a biopsy of my nose and cleaned out my nasal passages. I also had a biopsy again of my nose back in early June which I found out was unneccessary.

09-05-2010, 07:44 PM
Hello Jan

Glad to read you are doing so well - Sincerely hope it's the 'one and done' for you !

Belated thank you for all the information you brought to us a while back.http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

12-01-2010, 07:56 AM
So I decided I wanted to try to go for a jog today, since I've been feeling so good recently. The stenosis reared it's ugly head as I remembered. A bit of pain in the surrounding area and a massive amount of weezing :)

So my question for those in the know. My TS is not getting worse, so I'm not progressing towards that magic 80% where they open you back up (I'm about 45%). It's got no impact accept when I sleep or try anything that gets me breathing hard. Is it reasonable if it's not progressing to get the procedure done so that I can do those things I can't currently, or am I crazy and opening myself up to problems?

12-01-2010, 08:03 AM
So I decided I wanted to try to go for a jog today, since I've been feeling so good recently. The stenosis reared it's ugly head as I remembered. A bit of pain in the surrounding area and a massive amount of weezing :)

So my question for those in the know. My TS is not getting worse, so I'm not progressing towards that magic 80% where they open you back up (I'm about 45%). It's got no impact accept when I sleep or try anything that gets me breathing hard. Is it reasonable if it's not progressing to get the procedure done so that I can do those things I can't currently, or am I crazy and opening myself up to problems?

There is always a risk with surgery. It can make things worse due to problems in healing or scar tissue. A good surgeon will discuss those risks with you. Some will even refuse to do an operation unless they feel it is really necessary. What does your surgeon and primary Wegener's physician advise.

12-01-2010, 08:08 AM
So I decided I wanted to try to go for a jog today, since I've been feeling so good recently. The stenosis reared it's ugly head as I remembered. A bit of pain in the surrounding area and a massive amount of weezing :)

So my question for those in the know. My TS is not getting worse, so I'm not progressing towards that magic 80% where they open you back up (I'm about 45%). It's got no impact accept when I sleep or try anything that gets me breathing hard. Is it reasonable if it's not progressing to get the procedure done so that I can do those things I can't currently, or am I crazy and opening myself up to problems?

I am of course unqualified to comment on the surgery but I will say bully for you for going for a jog!

12-01-2010, 08:13 AM
Who gave you the magic 80 percent number, Psyborg? I was at 2.5 mm at dx, and opened back up to about 7 mm when all was said and done (normal about 8 or 8.5). My doc would operate again when I got around 5 mm, and I would probably just barely be noticing it at that point. My stenosis is in the subglottis though, very little in the trachea, so I'm not sure if that's where the difference lies -- maybe it has to be really bad before they will touch the trachea since it's hard to get to?

And how would they open you up? That's the other question.

12-01-2010, 08:25 AM
Well my ENT (at CC) wants to do the procedure with Laser, my Wegs Specialist says NUH UH! :) So anyway they'll have to work that out.

I guess I thought it would continue to get worse and I'd need the procedure eventually, now I'm wondering if I should do it at a stable point to make things easier to do again as far as aerobic activity.

12-01-2010, 08:39 AM
Huh. That's interesting. Is your guy at CC, Dr. Lorenz (who I have read is an expert in stenosis) or one of his associates, then I would say OK, but yeah, a WG specialist in general is going to give a big fat no to laser because of the risk of a lot of scarring with it.

This is tricky because there are a lot of different levels of severity with this condition, and many diferent procedures to correct it.

12-01-2010, 09:36 AM
My specialist is Dr Villa Forte. My ENT is Dr Knott, who they work with regularly. His opinion is there was less danger to the voicebox going in with the laser than with a knife. I'll let them work that out though :)

12-01-2010, 01:13 PM
Well, tomorrow morning I am haveing dilation for sub glottic stenosis. Wish me well. I had it done once before about 1 year 8 months ago. That is not too bad of a run I guess. Still , I could have done other things tomorrow. But I like breathing so away I go. 'See' ya'll when I get back.

12-01-2010, 03:05 PM
Best of luck, Kirk. :smile1:

12-01-2010, 05:10 PM
Thanks Sangye. I appreciate the moral support.
I really like this doc and his staff, we all know how much that means. (As a funny side note, my doc has a new nurse who did my pre-op appointment yesterday. She is from Pakistan and it turns out likes gardening like I do. So tomorrow I am taking her some red mustard seeds that I told her about that is one of my favorite plants in my garden. She said she would find something to trade with me. Its funny how just a little personal connection like that can feel so good. She has a cool name that I have never heard before - Nargis . )

12-01-2010, 05:59 PM
good luck:thumbsup:

12-01-2010, 09:50 PM
Well, tomorrow morning I am haveing dilation for sub glottic stenosis. Wish me well. I had it done once before about 1 year 8 months ago. That is not too bad of a run I guess. Still , I could have done other things tomorrow. But I like breathing so away I go. 'See' ya'll when I get back.

I hope all goes well with your procedure today. Good luck.

12-01-2010, 11:58 PM
Good Luck Me2.

12-02-2010, 03:43 AM
Good luck me2. Seems like almost two years is a great deal of time to get out of a dilation with no surgery so congrats!

12-03-2010, 12:36 PM
Thanks for all the support you guys. Yes, JanW I consider that length of time not too bad before needing another dilation.
Nobody knows what I go through like my buddies here do. The procedure went very well. I stayed at my sister-in-laws house last night and she took good care of me. It is good to be back home. My throat is sore of course but not at all bad.
In fact the whole thing is not really that bad. I've had dental work that went worse. I just need to get away from people now so I can quit talking for a while.
My sister-in-law is a nurse and she turned me onto something new that might interest someone here. The oxycodone pills make my mouth really dry and NOTHING seemed to help until she gave me some mouthwash called "Biotene" . The stuff worked like a miracle. Instant relief for dry mouth. Pleasant tasting and lasts for quite a while.

Thanks again for the support.

12-03-2010, 01:56 PM
So glad all went well with the surgery. Glad you are being taken care of by a nurse. :)

12-03-2010, 01:59 PM
Thanks elephant. It does help having a nurse in the family. Poor girl has had to listen to years of my endless problems and doesn't complain. She is the next best thing to a weggie - and thats saying a lot isn't it?

12-03-2010, 02:13 PM
Yay, so glad it went well, Kirk. :thumbsup:

12-03-2010, 02:20 PM
Thanks Sangye. I certainly had less anxiety having gone through it once before and being able to trust my doc and his team.
A VERY signifigant difference this time too. Last time I TOTALLY lost my sense of taste. I mean zero. It was very weird and lasted over three weeks. I became concerned it might be permanent. It came back. This time, sense of taste was right back the same day. The doc said last time may have been due to some neuropathy from the pressure of the procedure. Maybe he took extra care this time who knows?
I'm just glad to be able to taste. MMMMMM Squash for dinner. Soft food for sore throat.

12-04-2010, 05:44 AM
Might I ask...when they do the procdure how to the anesthetize? I've been told I can't be under full anestetic because of the blockage (which is a concern as I have a stupid abdominal hernia starting again.) They said the answer was to do a open repair under local rather than a lapriscopic repair which requires full anethetic. To be honest I'd rather get the stenosis repair then the hernia if I can avoid another massive open abdomen scar (not to mention the pain was fairly significant when they fixed one a bit lower last year).

Oh...and the hernia was caused at a former surgical site due to all the coughing I did from the stenosis last spring before they figured out what was going on. I swear I'm chasing my tail on these dumb medical issues :p

12-04-2010, 05:55 AM
I have a hernia too, but they did not want to operate because of all the other problems so I now wear a surgical appliance - a pad on an elastic belt worn below the hips. It is not great, but better than getting complications.

That will be another red dot on Hammy's silhouette of me! :biggrin1:

12-04-2010, 06:17 AM
Mine is actually way up just below my sternum. I had an open gall bladder surgery two years ago, and I think the scar tissue causes the area around it to be prone to tearing. This one is exactly two inches up and left of the last one :) When I tense my stomach muscled I see a noticable bulge (or when I cough as well) just below and right of the sternum.

12-04-2010, 07:52 AM
Maybe you're about to give birth to an alien?

12-04-2010, 08:19 AM
LOL that's what I thought when I started seeing the bulge when coughing. Actually that scene at the end of Space Balls instead of Alien though :p

12-04-2010, 10:50 AM
Aliens are the only thing that makes sense to me. Remember 'Think aliens, not zebras'.

I was curious about the anesthesia this time and I have good news for you. They told me they would start me on propofol and then switch to another anesthesia which was given IV. This allows them to work on the airway without having to get gas to my lungs. I forget the name of the stuff but the Dr said it was an opiate simular to oxycodone except that it was extremely fast acting and extremely fast to wear off. I can attest to both. It left me clear headed with no nausea - really good stuff. (Last time I drove home after the procedure - a big no no but I really felt that good.)

I know what you mean about the hernia too. I had one done a few months ago and boy was that a sore thing to heal up from. I prefer the stenosis repair too.

12-05-2010, 02:56 AM
Getting kind of worried reading all of this. I had surgery in the beginning of October, they dilated with a balloon but they also used laser to cut through some of the scar tissue. I'm worrying a lot these days because I'm starting to feel it closing slowly again. Especially now that I've gotten a cold. Just 2 months and its already closing! :mad1: By reading what you say about the wegs specialist not wanting to use laser, I wonder if my docs didn't know everything they should've known about tracheal stenosis in wegs patients.. The leading expert in WG in Norway is at another hospital, but I thought they were getting advice and stuff from her. But maybe the surgeon who did the operation didn't talk to her first.

Also I asked to get their notes from the surgery to see if they had swabbed with mitomycin C (?), but I don't think they did, as it didn't say anything about it..

Wondering how Norway's top hospital could not give the best care possible.. Going in for a routine check-up next week, so I'm thinking I'll ask then how much they really talk to the wegs expert. As well as mentioning mitomycin C and laser.. :mellow:

12-05-2010, 04:21 AM
I don't know what kind of anesthesia they gave me for my procedure but it was fast acting, and wore off very quickly. I could hear the nurses saying, "great operation, doctor" while they were wheeling me out the room, and by the time was I was placed in recovery I was completely fine (thristy, but fine).

Elena - I know that sometimes if the person has horrible tough scarring docs do have to use a laser because that is the only think that can cut through the tough tissue. Unfortunately, with a balloon dilation alone, it's not uncommon to see people having 3 or 4 a year -- you would hope to get more out of having had actual surgery, but even that's not always the case.

My doctor considers me a very unusual patient in that I've only had the surgery once in nine months. He said that he had a good feeling about my case when he did my surgery (like my rheumy had a good feeling about my case when he met me), and in fact I have proven to be a better than textbook case with limited problems. I think that they thought this because I had stenosis and WG for a long time (more than five years) but never got super sick and had periods of feeling really well (perhaps 'remissions').

Myomicin C is absolutely standard of care in these cases though -- I think you should have received that, even in Norway.

12-05-2010, 04:27 AM
Hi Elena,
I'm sorry you are feeling like you are loosing what you gained. Aside from what procedure was used on you, I do know that this disease has a mind of its own. I read up extensively before getting my first dilation done and found that there were a very wide range of results. I went into it knowing that I could be one of the people who needed it done 20 times or one of the people who needed it done 1 time - no way to predict. From what I read , it seems the average is 2 to 3 procedures- JanW may have a better comment on this than me.
I do remember finding that although the use of lasers seems to have been quite common for a while here, the current experts here tend to recommend against them.
I would say that I wouldn't automatically say they should never be used. I think my own doctor said something about using them if the damage was too close to the vocal cords. My own scarring was very close to my vocal cords but he did not use a laser.
He also did not use mitomycin C on my first procedure. He told me at the time that in his experience he wasn't convinced there was any benifit. This time he did use mitomycin and said the possible benifit outweighed a very minimal risk. Well, I thought "I wonder why he didn't think that the first time then?"

Oh well.

Everything I have read that the progression of the stenosis does not seem to follow the disease or the treatments. It apparently just does what it wants when it wants. If it were me I would not be overly concerned that they used lasers the first time when possibly they could have done it without. The important thing now would be to get a thorough evaluation and plan for if you need the procedure again.

I go to a top hospital here in Seattle and I have learned to never assume that they are giving me the best care possible. I read up and learn as much as possible - often my own reading changes the course of my treatment.
I know there are experts at our Vasculitis Foundation that give free consultation to other doctors.

12-05-2010, 05:23 AM
Unfortunately, with a balloon dilation alone, it's not uncommon to see people having 3 or 4 a year -- you would hope to get more out of having had actual surgery, but even that's not always the case. I didn't know there was another way to fix it. What do they do when they do real surgery?

I knew that I probably would have to have more dilations, but I didn't think it would start closing up again quite so fast. Still, I guess I am lucky as my WG seems to be calm atm. Almost haven't had any other problems than my tracheal stenosis since last december, so that's promising : )

About the laser. I don't know if it was really necessary, but at least I'll make sure and ask about it before next time. Will make sure to read up on things a lot more before any other changes in my treatment and ask more questions. Its becoming a lot easier to do so and get relevant info when I have this forum. You guys are amazing with all your knowledge!

12-05-2010, 05:47 AM
If you had lasering, you had 'actual' surgery. There are those on this board that get dilations alone -- those close up pretty quickly -- why wouldn't they, if you think about it logically, because the tissue just goes back into it's regular place.

My surgery was with micro surgery -- the doc made a series of incision to basically make the opening wider, and so far it hasn't narrowed.

12-05-2010, 05:56 AM
Ah, I misunderstood what you meant by your comment.

I see what you mean about balloon dilation alone. So yeah, you would think actual surgery would work better. But no such luck this time. Maybe next time will work better.

12-05-2010, 08:15 AM
For what it's worth, it's pretty common to need a second surgery 3 or 4 months after the first -- that's where my doc thought we would be.

12-09-2010, 05:55 AM
I'm in the hospital now and I asked the doc about mitomycin c and laser. He knew about the risk of scartissue with laser and they used mitomycin sometimes. So I'm happy they knew what they were doing and that they made an informed choice when they did my surgery : )

When you guys talk about laser, do you mean actually burning away the scartissue, or just making small incisions? 'Cause they just made som small incisions in the scartissue before dilating, which should be relatively "safe" according to the doc (not that anything's really safe when it comes to scartissue and wegs.)

Having another bronchoscopy tomorrow morning to see what's going on down there and whether or not I'm going to need another dilation. Not sure myself what I'm hoping for. Not sure what I'm going to do If they tell me it's fine down there, when I'm feeling that it's getting harder to breath. Had a spirometry earlier today and it was supposedly not much worse than the one I had after my dilation ... Maybe it's psychological :unsure:

12-09-2010, 06:02 AM
I think that some docs use laser to burn away the scar tissue -- but my sense is that more do the more sophisiticated procedure you're talking about -- using it like a knife.

What is the criterion for them using myomicin C in some cases and not others?

12-09-2010, 06:12 AM
Not quite sure, but he said that to use Mitomycin C you had to use a thicker and stiff scope which could end up damaging the airways more, and then create more scartissue. So it's a matter of weighing the pros and cons.. I guess they will consider using it next time if the first dilation didn't have satisfactory results.

12-09-2010, 09:26 AM
This mirrors what my ENT said to me last visit pretty closely. He said you actually are taking a bigger risk using a knife due to proximity to the vocal cords.

04-13-2013, 09:30 AM
well this tracheal stuff has me scared,
i am a singer and a singing teacher,
and i have been hoarse w/ this disease,



Dirty Don
04-13-2013, 09:43 AM
well this tracheal stuff has me scared,
i am a singer and a singing teacher,
and i have been hoarse w/ this disease,

Ever try Entertainer's Secret? Available online...helps immensely with the cough, hoarseness,, and dryness that comes with WG and it's drugs. Best to you.

11-08-2015, 01:50 AM
I don't know but my stepson Ryan has had about 8 teach surgeries was in remission went off prednisone and then it came beck now in his lungs as well. Has just had surgery on lungs.

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08-18-2016, 03:38 PM
Hi apologies firstly if this has been asked in the past but Im currently in remission with WG according to my dr but noted to my ent that at times when i do heavy exercise i wheeze a bit. He had a look and said yes looks like some stenosis. Questions
1. Is it common to have stenosis even when in remission?
2. Does it often get better, stay the same or worsen?
3. Ent dr asked i increase my prednisone whereas immunologist said dont increase it...which one to go with?
4. I dont have any inflammation or redness apparently so sounds like fibroblasts or scar tissue...is it a gradual thing?

Sorry for all questions but im a little worried given everything else is good but my immunologist doesnt seem too concerned

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08-18-2016, 03:59 PM
It is not uncommon for stenosis from WG to happen even when in remission. I have had stenosis during remission. The good news is that it is usually fairly easy to fix. I have had dilation done maybe four times and I have had great results each time. It is not a real scary procedure either. I go home the same day- and can breath better right away.
If it is scar tissue from WG I don't believe it can get better on its own.
For me it has always been fairly gradual but I think I have heard of cases that progress fairly quickly.
I don't think prednisone will have much effect on stenosis and even if it has some effect it is not a treatment. Stenosis will not stay improved from prednisone and of course you don't want to get stuck on higher doses of prednisone.
If it were me and I wanted to test the effect of prednisone I might try it at a higher dose for a very short time and then reduce back down to baseline and see what the effects were. Of course I would run this by my doc before trying it.

I think stenosis is one of the rare cases where treating the underlying disease has little to no effect on the secondary problem.

08-18-2016, 04:19 PM
Yeah ok thanks for your response. So is it possible that it stays the same? Odd my immunologist responded that it is possible that it resolves on its own. Not sure how though.

08-18-2016, 04:28 PM
It is definitely possible it will stay the same. Resolve on its own? I don't know. I have not heard of this or experienced it myself. I have tolerated mild stenosis for long periods of time but now that I know how easy the repair is I enjoy having an open airway and would not wait very long to get it fixed.

For me the line in the sand is if it is limiting my activity in any way. If it is not limiting then I would probably wait.

08-18-2016, 04:31 PM
Thanks so much for your response. My ENT was a little concerned whereas my immunologist wasn't overly. The ENT estimated about 40-50% but I don't have any shortness of breath at rest or anything...only with physical exercise (high amount). Should I be concerned?

08-18-2016, 04:45 PM
I have gotten dilation under pretty much the same circumstance as you because I wanted to be able to breath during heavier exercise. I think the immunologist is looking at it through the lens of his specialty and so is the ENT. So, they have a little difference of opinion. When I have airway issues my Rhuemy , who manages my WG treatments, has me make decisions with my ENT.

I think ultimately it will be up to you as to whether you want to get the procedure to improve your breathing and then talk to your ENT about it. I would make sure that the person doing the dilation has experience with doing it on WG patients. It is a very delicate part of the body and requires great experience and skill to not do further damage. My guy in Seattle has proven to be very good at it. I found him by contacting an ENT off of the Vasculitis Foundation list and asking for a reference to someone in my area.

08-18-2016, 05:10 PM
Yeah...I see my ENT guy in a months time again so will probably wait until then and see what he says regarding if it has stayed the same, got better or worsened. Do you have to undergo a general anasthetic and are you in intensive care or is it day surgery?

08-18-2016, 05:14 PM
Also do you know if colds or post nasal drip makes the stenosis worse? That is if I improve the post nasal drip would that assist with the stenosis?

08-18-2016, 05:19 PM
It is general anasthesia but it doesn't take very long. I'm awake , walking and talking in very little time. Because of the anasthesia I am not allowed to drive home but really I feel pretty good. It feels especially good to be able to breath so good.
It is day surgery. They like you to spend the night with someone who could help you in case of swelling or another reaction of some sort but actually I have gone home some times by myself.

You will be injected with steroids in the throat and possibly Mitomycin C will be applied to slow the healing. I have no fear of this procedure. I'd rather have that done than get ingrown toenails worked on.

08-18-2016, 05:23 PM
Colds and post nasal drip can make your breathing feel worse but they don't actually make the stenosis worse. Colds don't cause stenosis. When the cold is gone you should return to the breathing you had before.

08-18-2016, 05:26 PM
I've been struggling with tracheal stenosis quite a lot too and have had 4 dilations in total. Usually it happens after I've been in remission for around 6 months, because my trachea gets inflamed during flares and then it takes a few months for it to heal and grow scar tissue.

The dilation procedure is not scary at all. You get general anesthetia, and you can often leave the hospital the same day. I agree with me2 that you should make sure to find a surgeon that has experience doing the procedure on WG patients. I'm not sure how it is with non-WG patients, but there is a tendency with WG that the stenosis gradually comes back after surgery, as the trachea heals. Though that doesn't happen for everyone. The first time I had tracheal stenosis I needed two surgeries, with 3 months in between. Then after around 3 years it reappeared, and I needed another two surgeries. No problems since that now.

As me2 said, as far as I know prednisone would have no effect on the stenosis, as there is no inflammation anymore, only growing scar tissue. The progressing stenosis might stop on its own, but I don't think it will be able to heal on its own.

im so blessed
08-19-2016, 02:19 AM
This is all so interesting to me, as my tracheal stenosis experience has been so different. It first started 6 years ago but went on for months before they found it. I had 1 surgery in 2011 and there was so much scar tissue they could not dialate it, but just removed scar tissue. He was able to get me from 60% closed to 40%. I have had a "flare" (according to my dr) every year. It presents itself by me getting very short of breath. When my ent scopes me, it is very red and inflammed. I have always been treated with prednisone at this point. And after im off the pred it does behave...for several months and then we repeat the process. This has been atleast 6 times in 6 years. I havnt had any other disease symptoms in this time frame either...so i am very confused by all this" stenosis activity doesnt mean wegeners is flaring" and expecially the one"prednisone doesnt take care of it" then why in the world have i been doing this for the last 6 years? Do any of you with stenosis have answers to these questions? Oh and my ENT says at this point it looks very much like it did since after it healed from my first and only surgery in 2011.

09-25-2016, 12:43 PM
I was diagnosed with WGs in approx 2009. I originally had sinus issues and hearing loss. About one year and 9 months or so ago, I developed hoarseness and some difficulty breathing. I was diagnosed with about 30% tracheal stenosis at that time and underwent Rituximab, 4 infusions, one week apart. This was effective and I seemed to be doing fine with no problems breathing etc. or hoarseness until about 6 or 7 months later, the hoarseness returned. (But no breathing problems) I let the hoarseness go, because I thought it might be something else since I was having no breathing issues. (Like an infection of some sort) So I had several rounds of antibiotics with some success off and on. But it kept returning. Also, I had moved and so did not have easy access to a rheumatologist at the time. The hoarseness and breathing issues returned. I was able to see another rheumatologist and ENT. I had Rituxan in June (3rd induction round) Seemed to be fine for a while. Once again, the hoarseness and breathing issues returned and I got to a point where I was coughing up crusts/thick mucous and this caused a few scary situations where I could almost not breathe at all. I was told I had a 40% subglottic stenosis, acid reflux, and some type of vocal cord dysfunction due to this combination of problems. I opted to have balloon dilation and cryotherapy. This was performed two weeks ago. Told it went well. I was sent home, 2.5 hours from Ft. Collins, CO where the surgery was performed. I was doing well, until the 2nd post op night. I awoke, could not breathe, coughed, and this only made the situation significantly worse. Went to the ER where I was intubated and spent 3 days in ICU back in Ft Collins on a ventilator until they could take me back to surgery to see what was going on. They said I prob had some swelling and some sloughing off that got in the way of the vocal cords and/or caused an obstruction. I was sent home after they successfully removed breathing tube with no issues. I seem to be breathing well now. (They dilated the stenosis from 6mm- 14mm with the balloon) I'm just wondering if I should seek someone else to do any future surgeries? My ENT here told me he has seen lots of Wegeners and has performed the dilation on Wegs patients. But how much experience is enough? In addition, he let me go home and said he has not had any other patients suffer this complication in the post op period. I would think this would be an obvious concern for airway obstruction. Should I return to Cleveland clinic for further surgeries/consults on the subglottic issue? And, has anyone had experience with the balloon dilation in combination with cryotherapy? I am now worried about all this causing worsening scarring in the future since people have mentioned on threads the importance of having an expert perform these types of surgeries on the trachea. Also, will my voice ever return to normal? I see a speech therapist on Monday. Hoping this will help the vocal cord problem. I'm also currently on an antacid. Thanks for any input on this subject.

06-01-2017, 08:34 AM
I had surgery for tracheal stenosis about two months ago. My first trach surgery. I was 60-70% closed. It has improved my breathing greatly. The bad new is that my doc said it does come back and that people return about once per year for retreatment. Some lucky ones don't need to return so often. The fact that I have been under treatment for the last year did not seem to prevent development of tracheal stenosis.

06-01-2017, 10:15 AM
My experience has been, the subglottic stenosis slows during remission and speeds up during flares.

01-24-2018, 08:38 PM
In the past I used to have duodenal ulcers from taking too many NSAIDs trying to cure my "illnesses" to function at work. I stopped taking NSAIDs for that reason but my illnesses progressed. My newest Endoscopy finding is now "esophageal stricture" with "chronic gastritis". They took a biopsy.

Gastroentologists don't know anything about this disease to discuss it. The same with all the highly trained Neurotologists, ENTs, Neurologists or GPs etc. No one has any awareness of this in order for me to be able to ask anything. The Gastro. did not even know what Kefir was!? In the past I've had years of severe chronic asthma which collapsed parts of my lungs, which of course affected my trachea for quite some time adding dysphagia to the mix. My asthma is currently under control, but my sinuses continue to be a horrible consistent problem with occasional sore throat, a "broken" Eustachian tube and ruined ears. Past of many elevated WBC and "odd" influenza type issues.
I am progressively getting worse and don't know what to do.

Are these symptoms commonly seen in Wegeners? I don't know if there's a difference or correlation with trachea stenosis to esophageal stricture/stenosis etc. (as it seems to be all in the same "windpipe"?) How does one test this? -H.

im so blessed
01-25-2018, 01:58 PM
Mostly by an ENT doing a scope would be my guess?? Thats how my stenosis was dxed.

01-26-2018, 09:23 AM
Are these symptoms commonly seen in Wegeners? I don't know if there's a difference or correlation with trachea stenosis to esophageal stricture/stenosis etc. (as it seems to be all in the same "windpipe"?) How does one test this? -H.

There are many types of vasculitis.
This is a question for your rheumatologist.
I't seems to me that the complications you describe that you were not in remission and the relapse was not managed well.
Your rheumatologist should be the go-to doctor and he/she should manage the team of specialists.