Subglottic Stenosis - What's the recovery from the surgery like?

[Hammy8241]

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

[Elena]

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

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

[Meredith]

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.

[Jack]

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.

[Meredith]

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.

[Jack]

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?

[cathy2330]

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

[Sangye]

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.

[JanW]

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.

[cathy2330]

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.