View Full Version : Subglottic Stenosis - What's the recovery from the surgery like?

01-21-2010, 09:24 AM
I'm newly diagnosed and know that I will have to have surgery for this. Anyone want to tell me what the recovery is like? How sore is your throat and how long are you hoarse? How long does the surgery take? (I know there's an overnight hospital stay involved). He says that he hasn't had to do a trach in over 10 years, which sounds reassuring, but that this is often the kind of surgery that must be repeated for WG patients. I don't really have a choice, I'm down to 3.5 or 4, when I should be at 7 or 8. My ENT is Lebovics of St. Luke's Roosevelt in Manhattan, who has done many of these before, and is featured on the vasculitis foundation's site.

01-21-2010, 02:37 PM
Well Jan.....I had a trach put in as a precaution, so if that is the case for you then recovery is a bit longer. They kept me in the hospital for 5 days. But just the surgery to open the airway.....I have had lots of those. The recovery is very quick and easy. Godd luck to you!

01-21-2010, 02:47 PM
Hi Jan, I'm so glad you posted this. I had heard of Dr Lebovics in another Wegs group but could only remember that someone in NY specialised in trach surgeries. Does he recommend Weggies have dilation surgeries with him, or just trachs?

01-22-2010, 01:56 AM
Sangye - he definitely said to me that I wouldn't have to have a trach -- this would only happen in an emergency situation to save my life (for instance, I don't have to consent to a trach in the paperwork I sign for the surgery). He hasn't gone over the details of what he would do (dilation, stent, etc.) and frankly, I'm not up on the various new methods because I am new to this as well. I meet with him again on February 5 and will definitely let you know what he says. He told me that recovery time is two days with only fairly limited sore throat and hoarseness but of course never having known anyone who has had this surgery before, I wanted to ask for confirmation here. He also specializes in saddle nose surgery, which is lucky since I have both!

01-22-2010, 03:39 AM
Oh-- I meant does he recommend that Weggies see him for SS, as opposed to having it done by other ENTs who see a lot of Wegs but don't do as many surgeries as him.

01-22-2010, 07:05 AM
Oh, got you. Yes, he would recommend that weggies see him for this and saddle nose, of which he's done a ton, but he also had at the ready names of a couple of docs for second opinions, who presumably do quite a bit of this as well.

02-04-2010, 05:12 AM
Janw, I've had the procedure done 3 or 4 times over the years by Dr. Lebovics, the recovery time is only a day or two and it's not too bad, just a sore throat, as far as I'm concerned Dr. Lebovics is the best for this procedure. Good luck.

02-04-2010, 05:20 AM
JDK - That's great to hear! How long did the sore throat last -- just a day or two or long after your recovery? How frequently did you have to have the procedure done? Did you have it done at St. Luke's? What kinds of meds did they give you before/after?

02-09-2010, 02:59 PM
Sorry I took so long to get back to you. The sore throat only lasted a few days, and yes it was done at St. Luke's. I don't remember what meds were used, but right now I'm on prednizone, and cellcept. I also see Dr. Carol Langford at the Cleveland clinic to keep an eye on my WG. If you need a great WG Doc, I highly recommend her. Good luck

02-09-2010, 11:43 PM
I second that, I see her too.

02-10-2010, 01:56 AM
Thanks JDK, I got the answers when I met with Dr. Lebovics on Friday. He says that they swab me with steroids as well as chemo drugs in the throat, and that I'll get steroids and painkkillers via IV. I don't have any drugs to take once I'm out though (other than my WG drugs, of course). I'm waiting to her from his secretary -- looking forward to getting this over and done with.

02-10-2010, 07:25 AM
Jan, why do they swab you with chemo drugs?

BTW, for a non-medical professional, you're doing an amazing job at educating yourself on Wegs and getting detailed explanations from your docs. :)

02-10-2010, 07:53 AM
Thanks, Sangye!

Actually my husband takes the notes! We've got it all in a notebook. They give you chemo drugs to retard the growth of the cells that will form scar tissue (of course they can't say it won't grow back, and in Weggies it frequently does). They administer steroids to minimize swelling. You get steroids in your IV, but the chemo drug (mitomycin) is only used topically. They make radial cuts at the "points of maximum tension" so that the scar tissue "springs back" like a rubber band and makes the opening immediately bigger. Then they insert a balloon (regular surgical balloon) to hold it open for as long as you are at 100 percent pulse/ox (so could be as long as a couple of minutes). At that point, you aren't breathing. They go through the mouth and he said it's 20 minutes of "hard surgery" -- lots of things have to happen in that 20 minutes. He also said that now he does SS surgeries that go past the third tracheal ring with a chest surgeon (trachea is really in the chest surgeon's specialty), because he feels that this has an overall better result, and it's becoming his new standard of care. I have scarring up to the second tracheal ring, so he considers this primarily a throat, not chest, surgery. You leave the next morning. He also said that some docs administer as much as 12 times the chemo treatment as he does to the area, but he isn't convinced from his reading that this isn't overtreatment with little benefit (scar tissue can still grow back) and possible risk.

02-10-2010, 10:38 AM
Wow, thanks for the detailed description. The part about not breathing elicited a panic response from me. I was on oxygen for 19 months when I first got diagnosed, and the fear of not being able to breathe was tremendous.

02-10-2010, 12:46 PM
I remember taking care of patients on a medical floor and thinking to myself, " I hope that never happens to me"...Just being short of breath brings so much anxiety! Many of my patients on oxygen sat in there beds and drank coffee and waited for their next breathing treatment. I saw the anxiety in their eye's and I can relate!

02-10-2010, 06:02 PM
I think this is one of the scariest descriptions of what can happen to us I have read so far. I have filed it away in the recesses of my mind so that I never have to remember it again.

02-10-2010, 11:20 PM
Jola medicine's have come a long way as you know, and that was back in the early "90's". Many of those patients had COPD, not well controlled. That's why I'm a nagger.....
Sorry, I hope you slept ok.

02-11-2010, 02:52 AM
I'm not sure, but didn't she mean the SS surgery?

I've spent a lot of time in the hospital gasping for breath. Sometimes breathing treatments helped, but if the lungs are filled with clots and/or hemorrhaging blood, you're just stuck gasping. Breathing treatments made me tremble and my heart race. I couldn't stand them, even when they helped me breathe. It was big price to pay for a little bit of air.

02-11-2010, 03:23 AM
The SS surgery does sound scary, but I had been misdiagnosed with asthma since 2005, have been to the ER a couple of times and gotten on the breathing treatments--not a big deal. I'm probably basically always a little short of breath but have completely compensated for it. As my doc says, you stop doing things like running up the stairs, running for the bus, walking and talking a lot at the same time -- and that's been true for me. I can honestly say that the way that I have been living for the last five years doesn't scare me...what scares me is the possibility of ending up trached -- and there are several people on these boards whom that has happened to. When I first learned I had a SS I read about all of these horrible surgeries where they would put stents in and the granulomas would grow over them, or people would end up with so much scar tissue that lifelong trachs become inevitable. I even read about surgeries where you would have to stay in the hospital for several days, sitting up with your neck stitched in a certain position (I think it was down to your chest), to let everything heal. Nightmarish! Now I have a 20 minute surgery, eat soft food later in the day, and go home one day later with a little sore throat and hoarseness, not so bad!

I think that this is why the doc says that it's not unusual for patients to break down in hysterics in recovery. At that point your airway is more tha 85 percent better when you went in, and it makes you realize how "scary" it was before. If my airway gets smaller it will be "incompatible with life" as he says, which is why we won't wait for remission of WG to fix it. As long as I am medically cleared and stable (which I will be -- I'm in generally good health except for this damned disease) it's going to happen soon.

Most of you have been through far scarier and challenging things with this disease than I have, I think!

02-11-2010, 03:59 AM
Jan what your going through is tough. So I'm gald this is all you have to deal with for now. You will do great, you really have it together!

02-11-2010, 04:06 AM
I think what you've gone through is pretty tough, elephant. When they stop my breathing I will be completely asleep, and when I wake up I will be able to breathe better than I have in five years. If that and the saddle nose deformity (which really doesn't look that bad -- even my kids have never pointed it out) are the worst things I will have to deal with, I will consider myself lucky. I look at some of you who have lost your kidneys, sight, hearing -- a 20 minute surgery doesn't seem so bad (although I am aware of course it will likely have to be done a few times).

03-01-2010, 05:00 PM
So is this surgery considered airway reconstruction surgery, or is it dilation? My dr is so scared to do ANYTHING with my airway until he says i get completely off prednisone, which my rheumy has already told him may be never or it may be a while. The bad part is, I have a trach. He put it in last year and Ive just been "hangin out" waiting for him to get ready to do somethin. Im from tn, and so NY is out for me. So frustrating. I talked him into doing a dilation this thursday, and he said if it holds for 3 months then he may take the trach out. has anyone had dilations? how long did your throat stay "open" after the dilation? I understand that people have to perform these a few times up to alot, but im just hoping this works so i can get this out. Any info would be great.

03-01-2010, 11:19 PM
Ticklytoes, how about Cleveland Clinic in Ohio? They have some great doctors. That is closer than NY. You probably need a second opinion. Wish you well.

03-02-2010, 01:46 AM
Why do you have the trach, Ticklytoes? My ENT is operating on me and I'm currently not having medical treatment for WGs at all. No pred or anything. That will commence after the surgery. Rheumo tried me on mtx but liver enzymes shot up and he didn't want to do anything to jeopardize the surgery. Both ENT and rheumo made clear to me that these two things are independent of one another -- that is, he couldn't wait for the WG to be 'under control' before dilating the airway - I don't have that kind of time. It so happens that the scar tissue isn't inflammed, so it's probably been there for a long while. He will swab the area with both chemo drugs (to retard cell growth) and steroids (to reduce swelling) but he's not sending me home with any meds (even pain). Yes, he has told me that it will likely have to be done more than once -- but he was talking 3 times, not a dozen times like some people on here. I agree with elephant -- I think that you need a second opinion. This is a balloon dilation, no reconstruction, and there are several different ways to do them in terms of meds administered, how the docs make the cuts, even whether you are intubated. I have minimal tracheal involvement (top two rings but my whole subglottic area is all scarred up.

03-02-2010, 02:55 AM
Ticklytoes-- even if you can't travel to a vasculitis center or to NY, your doc could consult with a VF doc. Your doc sounds very inexperienced with Wegs. Please get a Wegs specialist involved somehow.

Also, if your reason for not traveling to NY or another VF doc is inability to afford airfare, there are numerous charitable orgs that fly medical patients for free. That may not be your reason, but I just thought I'd share the info.

03-02-2010, 03:02 AM
Ticklytoes -- I forgot to mention that my ENT doc is a VF consultant. His name is Dr. Robert Lebovics. (pronounced LEE-BOW-ICKS). That having been said, I personally wouldn't have windpipe surgery with someone without a lot of experience. There are cases on this very board where the surgery has been suspended because the surgeon got in and couldn't deal with what he or she was looking at. Imagine how disappointing that must be! And the risks of the surgery, while not high, include death, collasped lung and uncontrolled bleeding among the top three.

Also, have no idea if you case is affected by long-term trach use or not.

03-02-2010, 08:56 AM
well, my rheumy tried to call him to have him consult with her and he never called her back. I know he's busy. My ENT doesnt seem to think that going in and "messing" around will do any good, and i don't think he's willing to perform dilations multiple times as I believe it takes. what do i do? he is an ent specialist and vandy and seems as if he would be offended if i ask him to call levobics. what do you guys think i should do? yes, the airfare and the question of how long i will have to stay or how many times i will have to return for surgery all play huge factors...i just dont have the money. also, i wonder if insurance will even pay when its so far away? gosh...im so frustrated.

03-02-2010, 08:57 AM
sangye...what orgs help with airfare?

03-02-2010, 09:03 AM
jan...i have the trach because the area above my vocal chords narrowed down to 5mm. since then, weve gotten bloodwork under control and my throat has been stable. i too, think that my throat is independent of my wg, just necause last sept we tried to taper the pred too fast and i couldnt hear well...but my throat didnt do a thing. it stayed the same. he says that while the cause is still there, everything he does will just come right back, the same way it came the first time. jan, could you ask dr levobics about this for me? when do you go back to see him?

03-02-2010, 09:16 AM
My husband had a good idea -- you could try to call Dr. Lebovics yourself -- his number is 212 262 4444. Seems like it's worth a shot and you don't have anything to lose, assuming that you know your own medical case pretty well. Best scenerio of course would be for docs to talk doc to doc so ask your ENT--your rheumo can try to talk to him but it wouldn't be a peer-to-peer consult. For instance, Leibovics isn't not going to talk about what kind of meds you should or shouldn't be on -- he's the guy that looks in your nose or throat and fixes it.

I also don't understand why you have a trach if you are a 5. I'm no more than a 3.5 at this point and can breathe just fine (not well on exertion, but I wouldn't be running to the hospital complaining of shortness of breath, know what I mean). I have probably been at this size for years. Has your windpipe collasped or otherwise been destroyed? My bloodwork is no where near stable, but this is considered a serious enough case that they will just go in and do what they need to do. They know with WGs that they will need to do it again anyway, but since remission is no guarantee (as my rheumy says), they can hardly wait for that. Besides ss involvement doesn't denote progression or seriousness of the underlying disease...so you're right, you won't necessarily get increased throat symptoms if you are in a flare.

It sounds to me as though perhaps no one is taking prompt action because you have the trach, and maybe the only person that is really inconvencing is you?

03-02-2010, 09:44 AM
Ticklytoes-- if you search "Medical flight charity" in Google, you'll get lots of orgs. Many people use these groups, from children to adults. There are some heroic philanthropists out there. Some will also cover land transport to/from airports or hospitals, etc....

03-02-2010, 09:58 AM
A lot of times corporations make room available on their private jets -- so it's a nice ride!

03-03-2010, 12:16 PM
thanks for the info guys! i called and checked with my insurance and they cover dr lebovics, and he takes my insurance too. Im excited! Im gonna see who will fly me up there! you guys are great.

03-03-2010, 01:28 PM
Terrific! Can't wait until you have your appointment with him. Keep us posted and I'll bet he can get you off the trach!

03-03-2010, 01:31 PM
Whooya! I'm so relieved to know you're going to be in the best hands for this issue. You can trust what he advises.

03-03-2010, 01:38 PM
That is great Ticklytoes. I too can't wait! You are in good hands.

04-27-2010, 03:11 PM
Hi Jan, I am new on here and have read your story and it is very similar to mine. I also have subglottic stenosis , narrowest is 4mm. I also have it in my bronchi's right and left. Right side size of a straw, and left alittle larger. I have had 5 balloon dialations since Jan. It looks also as if my stenosis has been there for a long time as it is very hard and calcified as the doc says. Mine is hard because I see a thorcic surgeon for the bronchi and really he has been dealing with the subglottic area also but I am seeing a ENT on Wed. that has dealt with a few Wegs patients. The problem is the dialations are shrinking back very quickly . I have not had the chemo drug topically in the areas and I think I will mention that to see if maybe that would help to keep it dialated longer. Doc did try stents but could not get them in my area was just too small. I have read about the resection (which does not sound nice) but if it will permanently fix the subglottic area and help my breathing I would do. I know that it is really close to my vocal cords but i am going to ask the ENT if he would consider if nothing else works. I am starting on IV cytoxan on Mon. If the subglottic area gets fixed then I only have the bronchis. Doc won't do anything stents on that area and he said he cannot resection that area. Hope you are doing okay. Oh the last thing is my anca is negative. I just had everything else elimanated and this is the best guess that they have. Apparently with subglottic stenosis it is common to have a negative anca. It is also all down my nasal passages..

09-30-2010, 12:50 AM
Wow , I got a lot more info about this kind of surgery here, than from my doctors. Probably because I'm not that good with asking questions. I never know what questions to ask. I usually don't worry much about medical procedures at all, and this surgery don't sound that scary, as I know I'm going to be asleep the whole time. I just hope I won't have to redo it a lot of times. My doctors said I may have to do it several times, but if I did they would consider putting in a stent (?). Can anyone tell me their experience with that? I mean, can you feel it or anything? Well, I shouldn't really be thinking about that now, as I could get lucky. In my experience, I'm never that lucky though.

09-30-2010, 01:07 AM
Elena, I can't answer your questions about the surgery, but I wanted to respond to your statement that you're not lucky. It's definitely not lucky to have Wegs (or any serious illness). And it's definitely not lucky to have a serious case, which you do. But it is incredibly lucky to have been diagnosed while it could still be treated and before you had major organ damage. Many Weggies are diagnosed on autopsy. It's also incredibly lucky to have access to excellent treatment and doctors. And I'm not sure if Norway has universal health coverage (pretty sure you do) but it's unbelievably lucky not to have to worry about medical bills and insurance, or to have to trade eating for getting drugs.

This is how I think. Every time I'm in a CT scan, getting a rituximab infusion, etc... I think how unbelievably rare it is in the world to have this kind of care. All of us in this group are the luckiest people.

09-30-2010, 01:20 AM
Yeah I know, I am lucky when it comes to things like that. It's just not always easy to keep it in mind. I mean, I see all my friends and family being healthy, like I used to be, and I feel like I am very, very unlucky. But when thinking about all of those who have it much worse, I guess I am lucky. And yes, Norway has universal health coverage. I can't imagine how it must be living in The US and other countries where they don't have that :/

I guess you gave me a bit of perspective just now, and I'll remember it the next time I'm feeling terribly sorry for myself! :)

09-30-2010, 01:31 AM
I understand. The thing is to have compassion for yourself, that you are suffering with this stinking disease, and at the same time remember that you have it very good. You could have Wegs in a 3rd World country.

09-30-2010, 02:09 AM
I'll remember it the next time I'm feeling terribly sorry for myself! :)
You are allowed to feel sorry for yourself now and again, we all do and the Forum is a good place to express it and gain some support. Just don't make it a way of life. It's not good for you! :smile1:

You could have Wegs in a 3rd World country.
But perhaps not for very long. :unsure:

09-30-2010, 02:29 AM
Thank you for all the good advices :)

You are probably right about that! But actually, I think I read somewhere that autoimmune diseases isn't very common in 3rd World countries. At least if you compare it to 1st World countries. One theory is that we are too hygienic..

09-30-2010, 02:32 AM
Or it could just be because diagnosis is so difficult. Improved awareness and diagnostic techniques may well be responsible for the increasing numbers of auto immune diseases in Western countries.

09-30-2010, 02:38 AM
sounds logical

09-30-2010, 06:16 AM
Hi Elena, I was watching Oprah one day and she talked about Norway. You guys have one of the most desireable places to live because of education, health and time off ...ect. It just makes me want to come and visit!

09-30-2010, 06:27 AM
Elena - In response to your question about stents, I know that docs here for the most part do not place stents because there is some concern that granulomas can grow around them, leading you to be much worse off that before. So, if they talk about a stent, always ask about the risk of having a foreign body placed in your body if you have an autoimmune disease (for instance my ENT will not repair my saddle nose using any synthetic products (although he could) but rather, will take cartilage off of my own body. The theory being that introducing something foreign into our bodies (in all but the rare instances), can dredge up inflammation that would be better off laying dormant.

And I just caution you not to assume your surgery will be anything like mine. Only three docs in the world do the surgery the same as he does...please make sure that you know exactly how they will do your surgery. It is a serious surgery.

09-30-2010, 06:42 AM
Yeah, I know Norway usually scores pretty high on those lists. I know that the healt care system i the us, for example, is very different from here :ohmy: Still a lot of people always find some things to complain about..

Jan - I'll make sure to ask my docs about that! I won't need one though, if I'm lucky :) Your surgery does sound much the same as what little I have heard from my docs, but I'll find out more about it anyways. And I've still got my mum with me to the hospital, and she's always asking questions about everything. I'm getting the best surgeon, in this field, in Norway, so at least I'm pretty sure he knows what he's doing.

09-30-2010, 07:07 AM
Keep asking questions Elena and don't be afraid to speak up to the medical staff. Wegener's is a rare disease and you can't assume that the doctors you will come into contact with will know much about it. I'm afraid that many of us have found out that you have to become your own expert so that you can spot when things are going in the wrong direction. With any luck you will have at least one doctor who is a specialist in vasculitis and this is the one who should make all the final decisions.

We are lucky to live in the age of the internet which allows easy access to information on all the various drugs and as patients, we often have more time to read up on this stuff than the doctors do!

09-30-2010, 12:41 PM
Hi Elena I too have stenosis in my trachea and also in both bronchis. While in the hosptial the thoracic surgeon tried to put stents in for me after many discussions etc of what to do and unfortuneatly after 2 hours of trying he was unable to get it in (it was what they call a Y stent) specifically made to fit but it was just too narrow an area and could not get it in. Because of all the trying to get in it irrated my trachea and caused a lot of swelling in an already small area and I spent 5 days in ICU as my breathing was almost non existent. As the swelling went down it improved. I had about 7 dialations from Jan. thru to May and then did 3 months of cytoxan. Last cytoxan treatment was July 22. Things seem to be regressing and I am having another bronchoscopy and Dialation on Oct 5 and then will be doing another 3 months of cytoxan. I was really leary of the stents and in some ways I am glad they were not able to get them in. I have heard alot of negative, that the stenosis granulomas can grow over them, they can cause infections etc. Don't know how it would have worked for me but I have to look at is as a sign that it wasn't meant to be.

Take Care. Cathy

09-30-2010, 06:41 PM
Hi Elena, I was watching Oprah one day and she talked about Norway. You guys have one of the most desireable places to live because of education, health and time off ...ect. It just makes me want to come and visit!

Beautiful country, great people, fantastic skiing, and snug snow holes …….. but the price of beer:w00t:

09-30-2010, 11:06 PM
Cathy - wow, you've gone through this a lot! Hope you'll get better now, so you won't have to do it any more. After reading what you all have to say about stents I definitely will be very skeptic and ask a lot of questions if my docs talk any more about it. I don't want them to do anything that can make things even worse. Probably they won't even consider it for quite some time yet.

Beautiful country, great people, fantastic skiing, and snug snow holes …….. but the price of beer:w00t:

Not just beer thats expensive here. Almost everything is more expensive than in other countries, which is why Norwegians love shopping abroad :tongue1:

10-01-2010, 06:21 AM
I am new to this forum - diagosed with WG 7 years ago. I have had to go twice for my Subglottic Stenosis. Both were out patient surgeries - no issues with the surgery at all. Both times it needed to be done because of the narrowing - I first sounded hoarse then the breathing trouble started. Worse went walking or climbing stairs. Have been lucky - it has been 2 years since my last one. Still on Cytoxan and Bactrim, can't seem to get off of it. Have actually started feeling better than I have in years. Have started working out twice a week, hard workouts. Trying to loose all the weight I have put on. Have great doctors.

10-01-2010, 06:35 AM
Hi Meredith.
Are you saying that you have been on Cytoxan for 7 years? If so, you must get off it as soon as possible. It is extremely toxic and can cause serious long term side effects. The usual recommendation is 6 months maximum unless there are some very compelling reasons for continuing treatment for a little longer. If you are having trouble when you stop Cytoxan, you should perhaps be taking an alternative form of treatment.

10-01-2010, 06:43 AM
They have tried me on Celcept - didn't work - probably been on Cytoxan for at least 3 years. Ready to go off but everytime I get close I have a flare up.

10-01-2010, 07:48 AM
It is really not safe to stay on Cytoxin for that long, perhaps you should try Rituximab instead. I think you should also be seeking the care of a specialist in treating vasculitis. I don't think the one you have is doing you any favours.

Celcept is quite a mild drug and it is probably too big a step to switch to it directly after Cytoxan. Something like Azathioprine would probably be more suitable once you start to show signs of stabilising.

Your post also raises the question of what you were taking for the first four years if not Cytoxan?

10-01-2010, 09:23 AM
Elena broncoscopy are generally no problem I have had problem over 2 dozen of them and if only having a bronch it is just with some sedation,you're awake but don't really recall too much. When I have the bronchs with the dialations I have to go right under as you cannot move at all while they are dialating. My problem is that the stenosis's have been there the ones in my bronchi for over 10 years and are so hard and calcified that after dialation within a week or two they start shrinking back. He cannot put a stent down the brochi's but where he tried to stent was in my trachea. After the 3 months of chemo (cytoxan) within 2 weeks I felt the shortness of breath coming back. This is why I am having another bronch and dialation and then doing another 3 months of the cytoxan. Prroblem is the stenosis down the bronchi are so calcified that I am not sure if after another treatment of cytoxan whether or not it will shrink back very quickly. I am going to go on a maintenance drug right away after, cellcept as I had a severe reaction ot Imuran. I was not able to start it right after the cytoxan treatment in July as it took almost 2 months for insurance to say that they would cover it and it is extremely expensive. So my fingers are crossed that this will work or I could be in for a lifetime of dialations. The main concern is to not let the bronchi areas close as there is no reopening once closed. A tracheotomy would not help as my narrowing is to far down the bronchis so I am hooped. It is a almost like a game of chess you have to make your move and then see what happens!!! Take Care and you should check about being on cytoxan so long. My rheumi does not want to do more than 6 months but in my case there may not be alot of choice. If after this treatment I may switch to Rituxab and see if that works. Cathy

10-01-2010, 11:53 AM
Meredith, holy smokes. Being on ctx that long is extremely dangerous and unacceptable. Have you seen a Wegs specialist? Jack's right about suggesting rtx.

10-02-2010, 12:36 AM
Cathy: Is your specialist telling you that being on ctx will have a positive effect on your stenosis? I'm not so sure about that at all. My understanding, from my doctor is that meds will improve your overall health (assuming that you are not in remission already and don't need meds) but it hasn't been proven to retard the growth of scar tissue (doesn't mean it can't, but no one has ever proven it can), so using the most toxic drug you can to do something without efficacy seems risky at best.

While stenosis is a very serious complication of WG (breathing is not overrated) no one ever suggested rtx or ctx for me because my overall health in the disease is good, despite this serious complication.

10-02-2010, 02:38 AM
Hi Jan, I have done three months of the iv cytoxan and my breathing did seem easier at the time but once I stopped seemed to regress. I am going for a bronch on Tues. to confirm this. Problem is keeping the old stenosis open they are shrinking and making my airways smaller and also stopping new stenosis is a big objective. At my last bronch about 5 years ago only had one spot of stenosis on my left bronchi and then in Jan 2010 had another bronch and discovered about 3 more areas of narrowing in the right bornchi and in the trachea. It is very hard to know what the right thing to do is but it may be to just keep dilating the old stenosis and medication to stop any further areas. I also have major crusting and narrowing in my nasal, have had nasal surgery to clean out. Rheumi does not think that it is under control enough to start Cellcept so we are doing another 3 months of cytoxin. I am a very odd case also as I have never tested anca positive and nasal biospy was inconclusive. Overall my health is not good at the moment, also have stomach issues (gut as they say) had endoscopy last week and it looks to be something autoimmune related. Gastro doc explained but I was still sedated so have an appt with rheumi to find out exactly. It is extreme pain after eating for a good 5 , 6 7 hours. I did ask my thoracic surgeon who is doing the bronch about mytcolin C??? on the stenosis to help stay open longer. He has not done on a Wegs patient ever and was going to look into. I really trust this doc but know that you have to have experience in this....anyways thats my story......to be continued I'm sure.

10-02-2010, 03:21 AM
Cathy I agree you sound like your situation is not controlled. I hope this round of cytoxan will make you feel better soon. I myself for years had stomach problems, they could never figure it out. It is all gone now. Keep asking questions, glad Janw is here to help you.

10-02-2010, 04:05 AM
Cathy, did you know Wegs can cause GI involvement? Many rheumys don't know this. I suggest you see a Wegs specialist-- your case is far too complicated for a regular doc.

10-02-2010, 04:28 AM
Cathy, I agree with the others, and would also caution you that sometimes surgeons are doing sinus surgeries to 'clean things out' when what should be happening is that the WG should be being controlled with proper meds. I met so many poor people who had any number of sinus surgeries all to no avail because their WGs wasn't controlled.

Do you docs confirm that you stenosis is presenting in the correct place for it to likely be WG (especially since you say you are c-ANCA). Stenosis is also common in relapsing polychrodritis (sp?) and sarcoidosis, but presents in different part of the windpipe each. It's VERY common to have subglottis involvement in wegs.

And myomicin-C is standard of care in these surgeries. Unfortunately docs don't agree on the dose -- mine said some surgeons use 10 times as much for their patients as he will. He's conservative because after all, it's chemotherapy (hence running a pregnancy test before surgery).

10-02-2010, 09:41 AM
I did not know about Wegs involving the GI but that is what the rheumatologist is thinking. Something about small and med blood vessels not contracting properly so food is not getting broken down properly therefore causing the stomache pain. I am hoping it will get fixed once I start treatment again. To be honest docs have thought it may be sarcoisosis but apparently treatment is pretty much the same as for Wegs. There are pretty much certain that it is an autoimmune type problem and the treatments generally involve the same immnosuppresent and pred. I don't know how many Weg patients have stenosis in the bronchis, I know it seems fairly common in the treachea which I also have. It was actually in the bronchi first. My lungs always sound clear because the narrowing is higher up in the bronchi, almost where it shapes into a Y , from the trachea then into the left and right bronchi. real problem area seems to be that I also have it lower in the bronchi's now also which stents cannot reach and also quite hard to get to to dialate. Need to have a flexible bronchscopy and also rigid bronchoscopy which is a little harder on the area and sometimes leads to swelling and it is not as flexible which causes problems. I have only had the one sinus surgery in my lifetime no one ever really connected the nasal narrowing to the lung narrowing until January of this year. I am using the salt and water sollution with the syringe and doing that frequently throughout the day but somedays it is quite painful. I do not have a runny nose at all it is very hard, crusty inflammation and ulcers that go all the way down the nasal passage. I am not sure yet if the doc will be doing the myomicin C but if it will lead to the narrowing staying open for longer I think it should be done. We shall see. I am going to read up (google) about the relapsing polychrodritis as it has been mentioned before but I just do not seem to fit one specific disease except that it seems to be autoimmune....

10-02-2010, 09:07 PM
I am using the salt and water sollution with the syringe and doing that frequently throughout the day but somedays it is quite painful.
Are you making up your own mix? If so, make sure you include some Baking Soda and have the solution warm.

10-03-2010, 03:51 AM
Thanks Jack yes I am making my own mix but I did not know about the baking soda I have just been using salt. How much baking soda should I use?

10-03-2010, 04:18 AM
I think I used to use half the quantity of salt used -

2 cups of warm water
1 tsp salt
1/2 tsp baking soda

I think it is the baking soda that is supposed to stop the stinging, but the first squirt always used to make my eyes water a little! ;)

10-03-2010, 04:38 AM
And use salt that is specifically for nasal rinses (sold as Neti pot salt, maybe other names). It's purified and does not have sand in it. If you use table salt, you can damage the mucous membranes with chemicals and sand granules.

10-03-2010, 04:43 AM
thanks guys I have just been using coarse salt but will get the appropriate salt and baking soda. It really does seem to help do you know what it does? Is it breaking down the hard crusting and ulcers. I know it is not like a usual runny nose as I have nothing to blow but it sure feels full in a hard sort of way. Hard to describe unless you actually feel it. I am going today to get the right stuff and also the baking soda as I have only been using the salt. Thanks for you help! Cathy

10-03-2010, 04:54 AM
I used regular table salt for at least a year and it seemed to be OK to me, but I would think that sea salt might have some unknown constituents in it.

Sangye, you'll have us worried about everything we touch soon! :ohmy:


10-03-2010, 08:02 AM
I use pure sea salt with no additives such as iodine or pure coarse salt with no additives. The latter is the cheapest and can be found in most grocery stores. I have been using both for over 7 years now.

10-09-2010, 03:03 AM
Hi Everyone Well I had my broncoscopy and dialation done on Tuesday and was a little tricky as there for some reason this time alot of swelling immediatily following. Freaked out the anestegiolists (although they were prepared but did not think any problems would arise). Had to have 2 does of emenephyrin sp? (adrenelin) and had to stay admited overnight. Swelling started reducing overnight withmany anti-inflammorties etc. Thoracic doc , other this this problem, was happy with outcome. Was able to dialate the treachael stenosis to 6 1/2 which is the largest he has been ever able to do. It had shrunk back quite a bit but he was really happy with the pliability?? and ability to stretch well. The two bronchi areas harder to get at but was also able to stretch them somewhat. I stared yesterday on another 12 week protocol of IV cytoxan with mesna and increased prednisone to 20mg ( I am hopeing to decrease that as quickly as I can) and hopefully this round will be able to kick it in the butt totally and I am set up for Cellcept in Jan. for maintenance. Thoracic doc will keep monitoring airways, although this last dialation little problematic but as long as they are aware I am sure I am in good hands. We have decided on the cytoxan treatment for another 12 weeks, already dd 12 weeks but did not feel that the disease was under control enough and maintenance drug not strong enough for this time. Nasals are still very crusted and hoping the cytoxan and increase in pred will help soon. Stomache issues settling down a bit on meds for that and have been eating minimally.

I am going to be on 20 mg of pred and 1000 mg IV ctyoxan every two and a half weeks. I have been reading about stomache protectors and I am on currently 40 mg Pantoprazole Magnesium once daily and domperidone Maleate 10mg before each meal. Is that sound correct to all you out there that are the experts!!

Take Care everyone and Happy Thanksgiving to all you Canadians on board. I know us Americans are not until next month and not sure when the Europeaon Thanksgiving is! But Happy Thanksgiving when your time comes to all of you! Cathy:rolleyes1:

10-09-2010, 03:25 AM
Glad you were able to dilate well, how is the breathing? Happy thanksgiving, enjoy yourself!

10-09-2010, 03:32 AM
It is getting better but I still have some swelling to go down so still wheezy and stridorish and quite a soar throat but is slowly feeling better and once the swelling goes right down and the meds starting kicking in I hope to be able to climb stairs and vacuum again without huffing and puffing.

10-09-2010, 03:37 AM
:hug1:Take an easy, when I had my lung surgery ...it was pretty difficult to even breath, but I walked slow and easy. You will soon enough be able to vacuum and break dance!

10-09-2010, 05:44 AM
Glad it went well, Catherine. The 40mg pantoprazole is a standard dose to take with pred. Very happy you're on it.

10-09-2010, 02:43 PM
Happy it went OK, just take it easy now.

02-03-2016, 04:03 PM
Digging up an old thread! I knew I'd seen subglottic stenosis (SGS) mentioned before. I was dx'ed with it several days ago. More of the gift that keeps on giving -- wegs. Its one of the issues that's been causing my shortness of breath, but "more research is needed".

I read up on the condition and it is more rare than wegs. The incidence of SGS in the general population is 1:200,000, whereas the incidence of wegs is just 1:30,000. What's interesting is that most instances of SGS occur in wegs people. Wegs is one of the major causes of the condition. I guess the rareness of SGS would explain why I wasn't dx'ed even after seeing 4 pulmonologists, even though, they all knew I had wegs. I see yet another pulmonologist later this month.

One pulmonologist has said I should let anyone operate on my trechea under any circumstances, but the ENT that dx'ed and took some nice pictures of it (I'll try to get copies to post here) said he could do the surgery in 5 minutes in his office. Thanks but no thanks.... After reading Jan's comments I'll probably get more medical opinions, particularly with my GH condition.

I'll have to do something sooner than later, though. It's getting harder to swallow. One pill in particular gets stuck -- not because its too big, but because it starts to dissolve almost immediately and it gets too rough. Eating is getting a little more difficult since i can't get enough air in between bites, so eating is now a slower process. i hadn't noticed how much slower until I went out to eat with friends the other day and I was way behind them at the finish line. Wheezing is now routine, so I know its getting worse. Ya just gotta love it! :-)

02-03-2016, 04:33 PM
I knew I'd seen subglottic stenosis (SGS) mentioned before. I was dx'ed with it several days ago. More of the gift that keeps on giving -- wegs. Its one of the issues that's been causing my shortness of breath, but "more research is needed".

"Damn that sucks"...

vdub, when was the last time you went to a doctor without getting a new diagnosis?

02-03-2016, 05:08 PM
when was the last time you went to a doctor without getting a new diagnosis?
Hmmmm.... actually, I think that should be "another diagnosis" vice "a new diagnosis". A "new diagnosis" would imply different than what I already have. I sure wish that was the case instead of more just being added on. But, to answer your question, a long time. Its becoming a bit of a bother. More seems to be going wrong at a faster pace. I don't know what will become of this, but probably not good.

Spring will be here soon and I had hoped to do a lot of work on our cabin in the mountains. I still think I can do the work, but I have to get a little more inventive on how to do it with less effort and it will probably go at a slower rate than I would like. I'm not even sure I can start a chain saw much less operate one for any length of time. It will be difficult.

02-03-2016, 05:09 PM
Vdub, sorry to hear you're dealing with subglottic stenosis. Did your ENT give you an estimate about what percentage of your normal airway you're working with? I had mine dilated twice with a laser by my ENT but this was before I was diagnosed with Wegener's so I'm not sure if treatment would have been different for me had they known. My ENT didn't seem to think these surgeries were an ideal scenario but rather a necessary evil. It sounds like getting a few other opinions is the right move.

02-03-2016, 05:45 PM
an estimate about what percentage of your normal airway
The ENT didn't give an estimate, but from what I saw I think it would be mild at this point. Maybe 10 or 15 percent.

The stenosis isn't the only problem, tho. The pulmonologist prior to the ENT (prior to knowing I had stenosis) said my shortness of breath was a "condition of a 1,000 cuts" -- the old chinese saying (actually, a form of torture) where a lot of small things, unimportant singularly, add up to be a big deal when taken together. However, I think the stenosis is the largest contributor to the problem.

02-04-2016, 12:41 AM
My ENT has done the SGS procedure on me 3 times - in the hospital as an out-patient. I went from not being able to breath normal to no problems. Since I have been on Rituxan I have not any problems at all. Still see my ENT every 3 months and he checks me but I could not be happier. I am able to work out - not running, but walking and bikes. I would not hesitate a minute to doing it again. I am on Nexium 1 pill a day just to protect my throat. The ENT that diagnosed me said he had never done the surgery so he turned me over to another guy. He told me it was important to have someone that had done it before.

02-04-2016, 12:45 AM
vdub,sorry to hear you have another problem.It sounds like the doc caught it early.Which is the only good news.I have seen at least 10 ENT docs between the major teaching hospital I go to,and the Mayo clinic.My SGS was caused by GPA.None of the ENT docs are gung ho about treatment,and would never do surgery in their office.There is no magic pill.Only surgery.The less they do the better.I have a Trach tube so dilation does not need to be done as often.Goods luck.

02-04-2016, 02:35 AM
Dear vdub. I am sorry for that new "gift".
Our Gwen knows a lot about this issue. I am not sure how much she comes here so if you want me to connect you with her please let me know. I will send her a msg on facebook. She also created page about it on facebook, I think not only. Try this link:

Airway Stenosis Patients Association | The Airway Stenosis Patients Association is a support network for anyone affected by airway/tracheal stenosis. (http://airway-stenosis-patients-association.com/#)

Keeping you in my prayers. Please update us.

P.s. I still have your email and skype. We were supposed to skype with my beautiful Phil at the day that he passed...

02-04-2016, 04:32 AM
Thanks, so much gals! Having input from people who have actually been trough the process is really important.

Alysia, I do remember we were supposed to skype on that sad day. I will always feel bad that I missed talking to Phil by just minutes. I think of him often.

02-04-2016, 06:44 AM
I dropped by the ENT and picked up a video of my subglottic stenosis. Below is a picture of it. I guessed it was maybe 15%, but as I look at it, it might be a bit more. I know its getting harder to breathe.

Subglottic Stenosis picture (click) (http://wasem.com/wg/SGS.jpg)

02-04-2016, 08:11 AM
For Vdub and anyone else interested in this subject, this is a recent study that somebody sent to me. I have not had to deal with this problem, but I keep a file of any info I come across on the various manifestations of our odd disease. 2357

02-04-2016, 08:16 AM


02-04-2016, 10:13 AM
Would stretching be considered surgery since I know that is often done? I have had that done a couple times but that procedure often doesn't last too long but helps a lot for awhile anyway.

02-04-2016, 10:55 AM
Vdub - I have seen an ENT/ who specializes in airway issues for a problem that was not related to stenosis. Is there someone else that you can see? I try not to "hate" or spew venom but don't I hate this disease and what it does to us. Sorry you are going through this - truly.

02-04-2016, 01:04 PM
Thanks for forwarding the study, Tom.... Very interesting -- I read it several times before I totally understood what was going on, but pretty much figured it out. The odds certainly aren't in our favor. I'm guessing rtx is in my future.

I am determined to take my rv to SoCal soon so I can see my first grandchild, so I'm hoping that a couple months delay in treatment won't hurt anything. That having been said, I know things are getting worse quite rapidly. Walking short distances is becoming more difficult. Even just sitting is sometimes a strain.

Yeah, it sucks....

02-04-2016, 03:22 PM
I have had dilation several times. More than a couple of years between each time. I consider it to be a really easy procedure with a huge benefit. Not only does it open the airway but the injections of steroids and application of mitomycin C may help quiet the disease process- the jury is still out on that but I suspect it helps. The risk is minimal.

It is outpatient but I am required to have a driver and someone is supposed to stay with me that night in case I have some adverse reaction. The only reaction I've had so far is to be able to breathe much better.

I just saw my doc today about it and will be having the procedure again very soon.
If it is possible for you to do it sooner that's what I would do. That way you feel better just that much sooner and get back to being more active which will be good for general health of course.

02-04-2016, 04:21 PM
I dropped by the ENT and picked up a video of my subglottic stenosis. Below is a picture of it. I guessed it was maybe 15%, but as I look at it, it might be a bit more. I know its getting harder to breathe.

Subglottic Stenosis picture (click) (http://wasem.com/wg/SGS.jpg)

That's interesting, hope I never get it. Oh, "Damn that sucks".

02-04-2016, 04:40 PM
That having been said, I know things are getting worse quite rapidly. Walking short distances is becoming more difficult. Even just sitting is sometimes a strain.

If your symptoms are rapidly worsening, it could be worth it to squeeze in some treatment before your trip to SoCal. My ENT always treated the SGS as a pretty serious matter and more than once mentioned how she didn't want to risk the airway closing to a point where I couldn't breathe.

Subglottal stenosis is no fun whatsoever. I really hated feeling limited by my breathing and I had a good deal of anxiety about my airway. It certainly isn't the best location for Wegs to flare up. I hope your vacation plans aren't affected by this! I hate when treatment interferes with life.

02-04-2016, 06:15 PM
which will be good for general health of course
Not to mention the all important mental well-being....

I think all of you have given me some pretty good advice. I'll probably start pushing a bit harder for appts....

02-05-2016, 12:58 AM
Just catching up on this thread, I really hate this disease. Dub, I would feel better about it if you went for treatment before SoCal trip.

02-05-2016, 03:28 AM
Most definitely sucks. But it sounds like there is a range of procedures that can help you. If I were in your shoes, I would address this asap so you can travel and enjoy your family without having the issue looming and no idea of when it may turn into something more emergent. Sounds pretty bad already the way you describe it. So sorry you are having to go through this.

One of the interesting bits in that study is that SGS seems to arise independently of any other WG activity and often while the patient is otherwise in remission. More and more, I get what my doctor meant when he said this disease is "treacherous."

02-05-2016, 03:44 AM
Vdub, hello. You probably were hoping to get away from the weg dog, as well as all the doctors, in so cal, but Vdub, the dog, goes there also, while you leave you're doctors there. He can't go to bora, bora, but all other places are fair game! Please get this looked at, as you don't want this to ruin you're trip, as well as put you in danger... If God forbid, something should happen, then its no longer a trip, its a nightmare... Interestingly I was just reading the thread again, on the nicotine prevention link, where the poster said nicotine prevents the furthering of this. I will stay completely silent on this one, as I seem to rile up some here!!! Haha... For real though, Vdub, please get this checked... I'm sorry all this is happening to you, it truly is a sucky sickness, with an EXCEPTIONAL, suck factor.... Debra...

02-05-2016, 09:45 AM
debra, did you ever receive an official diagnosis? I read through your posts and it seemed like nothing definitive came from your appointments. I would have asked on your thread but it has been closed.

02-05-2016, 10:05 AM
Jlove, hi. Figured while I'm sitting here playing the wait game, once again, waiting on my advocate, id respond! I thought it was maybe a good time to end the thread to no where, for now, anyway... Jlove,no, yes, kinda? No not in stone, the way I need, but my primary is on board and trying hard. Unfortunately, there's only so much she can do, when the so called specialists I've seen, aren't at all specialists in anything weg dog related. My primary was concerned enough to get a home visit nurse, last April, that I'm still fighting on. So right now, waiting on a pulmonary doc, then also waiting on a new biopsy appointment, but doc, needs to do some seriouse jumping on this. She started jumping today... I need a diagnosis in stone, just for the pain that's coming, as I'm really not sleeping, and its killing me... I will get the diagnosis, just a question of the irreversible damage that will be done by then. Can't grow my bottom teeth, gum and bone back! So... Thankfully all the top are there!!! Haha... Oh boy, what a trip... Thank you, for asking! Take care... Deb...

02-06-2016, 08:11 PM
its no longer a trip, its a nightmare...
Not really.... We're pretty seasoned int'l travelers. We've had some issues overseas, but we manage quite well. No worries. I don't want to let this disease stop me from doing the things I want, so I press on. I'd hate to just stay home, sit around, and annoy everyone around me -- I annoy people enough as it is. :-)

no, yes, kinda? No not in stone,
Deb, I didn't realize you hadn't been dx'ed? What symptoms do you have that make you think you might have wegs?

02-06-2016, 09:45 PM
Vdub, this post woke me up! Haha... Oh, sleep, why? Why no more visits? One or twice a week tease, then you're gone! Vdub, hello... Vdub, I here ya, on this, just meant if God forbid, something happened why gone and away friend you're docs... As far as symptoms, it would be easier to tell ya, the ones I don't have... I'm dead serious... I pretty much got em all, eye scleritis, and not stop problems, nose pain with slight change in shape, with bleeds. Gum teeth, bone sudden dramatic changes. Leg pain, roaming but always there, going on year four. The leg pain can be brutal, and never leaves, though some days better than others. Fatigue that just can't be worded, probably the worst one of all, cause its always there. Now roaming arm, shoulder and hand pain. Sudden ear problems, when I've never so much as had an ear ache. Hearing will go, like under water, then pop back, later? Last episode took over a day to pop, and lost a slight amount of hearing... Lung pain, started a couple months back, with pretty significant fever, though a little better than it was, and a little to me, is huge. Kidney issues, again suddenly, and protein in urine, was stable, but not anymore. Blood in urine, bah, blah, blah. All these and more happened at the same time! Right after my endoscopy. So I'm guessingi had it, and it was waiting for a stress to show itself. Actually, I know, without a question, this is what I'm dealing with. Im also the one, who put silica all over my apartment, in an attempt to prevent bedbugs! I put the wrong stuff, Vdub! Yes, I'm an idiot! I let fear get me... Live and learn, right? A very hard lesson, though... Vdub, where do you get you're avatars? Cute! Hope you're doing better... Deb...

02-07-2016, 05:06 AM
where do you get you're avatars?
Some I make, most are borrowed.....

02-07-2016, 06:28 AM
Vdub, pretty cool... Are you an artist? I never saw avatars like this... Interesting... Deb...