User Tag List

Likes Likes:  1
Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: How bad does it have to be before you're treated?

  1. #1
    Join Date
    Aug 2014
    Location
    Dunedin, New Zealand
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default How bad does it have to be before you're treated?

    Last year I had a really bad chest/cough thing going on. Lasted for ages and I couldnt shake it. So I went to see the doctor (g.p) while I was there I had one of my many coughing fits and she thought she heard some stridor. She phoned the ent at the hospital and I got an appointment straight away. The registra put the scope down my throat and saw immediately that it was at 50%. She wanted to operate and had me admitted. Etc etc. I had a ct scan but the narrowing couldnt be seen. Then my usual nephrology consultant saw me and wasn't at all concerned nor was the ent consultant. Pretty much I think they both felt the registra had overreacted. The next day I was home. So now almost a year on - nothing. I have issues breathing and get puffed quickly. But there has been no further talk of operating etc. So how bad does it have to be before some thing is done? Would love to hear others experiences with stenosis issues. Cheers
    Last edited by Airini; 09-07-2014 at 10:53 PM. Reason: spelling

  2. #2
    Join Date
    Nov 2009
    Location
    South of Boston
    Posts
    797
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Was there a diagnosis? I would think that if I lost 50% of my swallowing capability I would dig very deep. Are you seeing anyone with wegener's experience?
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  3. #3
    Join Date
    Apr 2010
    Posts
    800
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm not an expert on the subject but I have had tracheal stenosis and had it corrected several times. (I've lost count) It has been several years since my last procedure. Even properly done there is no guarantee how long improved breathing will last.
    But this isn't what you asked about.

    If you have stenosis due to WG it is my understanding that you are a candidate for correcting it if it significantly affects your quality of life. It sounds like it has reached that point with you. There is probably a number that expresses this like 60% or something but I don't know what that number is.

    I do know that it is common for WG to cause restriction very gradually and someone can become very restricted before seeking help. If allowed to adjust to restriction slowly we can adapt. This is not good.

    The first time I was seen for my breathing problems I was scoped and the doctor told me that if someone normal were to suddenly have my breathing capacity they would be in an emergency room with extreme distress over breathing difficulties.

    I don't know what the situation is now, and especially where you are, but in the past people with WG have been treated with incorrect procedures like lasers to open the airway. Incorrect procedures for WG caused stenosis causes more damage. It takes a special understanding of WG and of the best current practices to treat WG stenosis. If your doctor even suggests lasers they are not educated in current practices.

    When I had the procedure done the first time I insisted that my doctor talk with one of the Vasculitis Foundation doctors (they are available for free consultation to the doctor) before doing my tracheal dilation. It turns out he trained with one of the experts and he was able to answer all of my concerns with good answers. He liked that I asked good questions - a good doctor will.

    It is very important that you learn more about the procedure yourself and then make sure that you have a doctor who understands it at least as good as you- if you should need it.

    Stenosis is rather an interesting problem in the WG world. It can occur during a WG flare or during a time when WG is subdued. The last I heard it was still not known what causes it and why it can be active even during WG inactivity.

    The good news is it is very treatable and I can attest to the fact that the dilation procedure is not all that bad. I was scared to get my first one but after having it I am not scared at all to do it again if necessary. I was home the same day as the procedure. I was not allowed to drive myself but I think I could have just fine.

    The first time was especially memorable in that I can still remember the incredible elation at being able to breath again.
    I still have some restriction but it is minor and doesn't limit my activities at all. If it ever gets worse again I wouldn't hesitate to have the procedure again. If I remember right (from my studies a few years ago) the average number of procedures for someone with stenosis is 3.

    Now of course this means some people get one and some people get a lot more. I seem to be falling right close to the average. But then I've had WG only 36 years- my results are not all in yet.

    Do you know any details of the procedure that was planned for you and then cancelled?

  4. #4
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,897
    Post Thanks / Like
    Mentioned
    19 Post(s)
    Tagged
    0 Thread(s)

    Default

    A lot of the replies have been focusing on as if you do have wegs, but after reading your post, I'm not sure you have actually been dx'ed with wegs. The docs have to rule out a whole bunch of other diseases until they can conclude it must be wegs. There isn't any marker for wegs, so the best they can do is test for other issues that are similar, such as, rhumatoid arthritis, lupus, etc. Once they rule those things out, then it points them closer to a wegs dx. Also test c-reactive protein and anca inflamation markers. Have any of those things been done? Did any of the doctors suggest wegs as a possibility?
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  5. #5
    Join Date
    Aug 2014
    Location
    Dunedin, New Zealand
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sorry I should have said. I do have wegners. Was diagnosed in 2010. The tracheal issues weren't picked up until last year. Originally in 2010 I lost my appetite, lost my voice, had a massive hematoma in my lungs, major joint pain and legions all over my feet and lower half of my legs. Was treated with 7 cycles of plasma exchange and 6 cycles of cyclophosphamide, 2 kidney biopsies and 20 days in hospital etc. 3 months later I had a flare and nodules were found in my lungs and was treated with 6 more cycles of cyclophosphamide. Afterwards was changed to azathioprine and instead of cellcept and am on prednisone. And will be for the rest of my life. This tracheal issue wasn't diagnosed until last year.

    When it was first discover the tracheal issue the registra had talked of the balloon inflating process nothing about lasers. I have an appointment on the 29th with the nephrology team and will ask about it then.

    I'm just a bit nervous because I'm finding tiny threads of blood in my phlegm so it brings back all the worries of getting sick again.

    thanks for the help :-)

  6. #6
    Join Date
    Jul 2014
    Posts
    895
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    From all the types of correction methods I have seen for the stenosis, I believe most of them make things worse because cutting away at, lazering tissues or forcing them bigger, is only going to cause scar tissue to shrink the area more in time.
    I posted a video on the various treatment options.
    http://www.wegeners-granulomatosis.c...-stenosis.html

    The one that I would consider for my mom would be the straight cut to widen the opening.
    This way, the only thing that can shrink is the hanging tissues along the cut.
    I hope this makes sense.

  7. #7
    Join Date
    Jul 2014
    Location
    Australia
    Posts
    28
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I have had four dilatations each time I was more than 70% blocked and my rheum had to intervene. Talk to your Rheum
    Last edited by Swb21188; 09-09-2014 at 09:16 PM.

  8. #8
    Join Date
    Apr 2010
    Posts
    800
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    mrtmeo that is an excellent video on stenosis. Thanks. I could have cut my rambling down by 90% if I had just posted it. It has all state of the art and up to date info presented by one of the absolute top doctors on the subject.

  9. #9
    Join Date
    Oct 2011
    Posts
    115
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Airini! It just has to be present and dxd to be treated and it sounds like you should get a look from a rheumatologist! They deal in Auto immune diseases and should come up with ha plan for you. I lost 2 lobe of my RT lung from a hematora but if the truth be known, it was wegs at that time. Three months later I was in the ER and had a flare with purura. I'm getting good care now!

  10. #10
    Join Date
    May 2016
    Location
    Phoenix, AZ
    Posts
    10
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I have asked that same question myself! How bad does it have to get before you can get treatment! My stenosis was 60-70% when I finally got surgery for it. I will not wait so long next time! The ENT surgeon said to come directly to him when I feel I need it. I don't have to go through the rheumatologist first. I will definately take advantage of that! I was hoarse and short of breath six months or so before I got a referral to the surgeon. I hope you get that sorted out. I think 50% would justify treatment?

Page 1 of 2 12 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
  •