Tracheal stenosis and remission

[Psyborg]

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

[me2]

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.

[Elena]

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! 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..

[JanW]

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.

[me2]

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.

[Elena]

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!

[JanW]

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.

[Elena]

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.

[JanW]

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.

[Elena]

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