User Tag List

Likes Likes:  7
Page 1 of 10 123 ... LastLast
Results 1 to 10 of 94

Thread: Tracheal stenosis and remission

  1. #1
    Join Date
    Jun 2010
    Location
    Richmond, MO
    Posts
    600
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Unhappy Tracheal stenosis and remission

    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

  2. #2
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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).

  3. Likes Jaha liked this post
  4. #3
    Join Date
    Jan 2010
    Location
    Wales, UK
    Posts
    339
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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

  5. Likes Jaha liked this post
  6. #4
    Join Date
    Feb 2009
    Location
    Saint Peter, Minnesota
    Posts
    460
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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)
    coffeelover

  7. Likes Jaha liked this post
  8. #5
    Join Date
    Jun 2010
    Location
    Richmond, MO
    Posts
    600
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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

  9. #6
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Lower lobe pneumonia? How did they find that? Does it look like "atypical" pneumonia? Wegs lung involvement often gets labeled as pneumonia.

  10. #7
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hey, coffeelover: where are you with your trach? Sorry, I don't remember if you got it removed yet or not?

  11. #8
    Join Date
    Jun 2010
    Location
    Richmond, MO
    Posts
    600
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Sangye View Post
    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

  12. #9
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hope the WG doctor can get you on the right track soon. Don't blame you on the xrays.

  13. #10
    Join Date
    Jul 2010
    Location
    Blacklick, Oh
    Posts
    1,398
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

Page 1 of 10 123 ... 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
  •