User Tag List

Likes Likes:  0
Page 5 of 11 FirstFirst ... 34567 ... LastLast
Results 41 to 50 of 105

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

  1. #41
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

  2. #42
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Elena View Post
    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!




    Quote Originally Posted by Sangye View Post
    You could have Wegs in a 3rd World country.
    But perhaps not for very long.
    Jack

  3. #43
    Join Date
    Sep 2010
    Location
    Osnabrück, Germany
    Posts
    93
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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..

  4. #44
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.
    Jack

  5. #45
    Join Date
    Sep 2010
    Location
    Osnabrück, Germany
    Posts
    93
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    sounds logical

  6. #46
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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!

  7. #47
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

  8. #48
    Join Date
    Sep 2010
    Location
    Osnabrück, Germany
    Posts
    93
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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 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.

  9. #49
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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!
    Jack

  10. #50
    Join Date
    Apr 2010
    Location
    maple ridge, bc canada
    Posts
    29
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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

Page 5 of 11 FirstFirst ... 34567 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •