User Tag List

Likes Likes:  20
Results 1 to 4 of 4

Thread: My experience with SGS

  1. #1
    Join Date
    Jun 2013
    Location
    San Diego
    Posts
    18
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default My experience with SGS

    Hey there, just thought I'd share my recent experience. I was diagnosed 10 years ago with this disease at age 19, so I'd like to think I'm no longer a rookie when it comes to this stuff. But for the past 5 years, I've been having problems with my breathing. Nothing bad at first, just a little extra effort and huffing and puffing to walk around and things like that. My doctors said I had asthma, gave me inhalers that never worked and left it at that. I also felt like I was always coughing up a lot of mucus, really thick nasty stuff that was almost impossible to dislodge. Docs said I just had constant post-nasal drip from allergies and extensive damage to my sinuses. WELL, within the past 3 months it finally got so bad that it started affecting my day-to-day life in a major way. I was tired all the time, couldn't even walk on a flat surface without getting winded...I couldn't even carry on a long conversation without getting short of breath. Every time I breathed in I sounded like a little kid with croup, I was wheezy on inspiration and expiration. I work at a hospital and all of my co-workers said I sounded worse than the people actually coming in through the ER. Finally I found a doctor that listened to me.

    They did a CT of my neck and found the subglottic stenosis. I was totally blown away. I've been in "remission" for years now. I haven't needed any meds, my labs have been steady, I haven't had any symptoms of WG besides the shortness of breath and the sinus issues that have been there since nearly day one. It just gave me a really big reminder to NEVER be a complacent party when it comes to this disease. Be your own advocate, don't let doctors explain away your symptoms and try to throw drugs at you without finding the root of the problem first.

    I had a balloon dilation with injection of mitomycin-c on Tuesday and was released from the hospital yesterday. The estimates from the CT scan showed a 55% airway blockage but when my doctor went in for the surgery on Tuesday, he said that my airway was only 4mm in diameter when it should have been 14mm. That's freaking crazy! I already feel like I have so much more energy than I did even just a few days ago. I hope that those of you reading this never have to deal with SGS, but if you do, there's absolutely nothing that compares to the first deep breath you're able to take after years of shallow breathing.

    To all my fellow Weggies: stay healthy, stay strong, and always always stay vigilant.

  2. #2
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    3,662
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default Re: My experience with SGS

    Wow, that's too scary. Thanks for sharing. How long have you been on true remission without meds ? How long do you now understand that WG was actually active, causing the stenosis ? Were there any other WG symptoms but the sinus & the stenosis ?

    I know few weggies on facebook who struggle with this problem. Seems to be complicated. If one suffers more from it, does it mean that his WG is active ? Even if it is the only symptom ?

    Sorry if I ask too many questions. I have some friends in mind.. Please feel free to ignore whatever...
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  3. Likes Pete, bobjannj, BenHornsby liked this post
  4. #3
    Join Date
    Jul 2017
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: My experience with SGS

    I had almost the exact same diagnosis experience. Docs thought I had asthma until they realized all the wheezing seemed to come from my upper airway/throat. If that is happening, yíall, ask for a neck CT scan to check for SGS!! Mine is right under/adjacent to my vocal chords and I am looking at surgery next spring while keeping a close watch until then. Iím not sure how long the SGS had been developing but my breathing has been a minor issue since 2011 but seemed to lessen after the WG diagnosis around that time and remission later on. It was still just attributed the asthma. My breathing and sinuses got worse around 2015/16 I wasnít diagnosed specifically with SGS until last November and when I was referred to a really good laryngologist.

    Like i said, basically the same symptoms you listed, and I wasnít even aware that SGS was a likelihood so I assumed that with my asthma diagnose everything was fine. Itís like I knew in the back of my mind something was wrong since I had trouble breathing but inhalers helped a bit but not a lot? And when docs listened to my lungs they were fine, breathing tests were mostly fine, but I was still wheezing and mucus would get stuck in my throat, and sometimes it just felt really tight when I was sick (and - hindsight- inflamed!) but I tried to tell myself I was fine bc if not, someone should have seen something by then (with all these docs I see!!). The problem was that I saw a pulmonologist to focus on asthma and an ENT that specializes in sinuses but needed to see and ENT with a speciality in laryngology (to which my ENT referred me. And now I have 2 ENTs in the same clinic that see me mostly together.)

    I am glad to hear that the surgery results happen so quickly - Iím actually very nervous about surgery due to the proximity of my vocal chords, and just having surgery in general. I just saw my doc last week and have decided to tell her that I want to move forward with surgery (since I am currently stable) when i see her next in January. Iím definitely confident in my doc, Iím just worried that I might sound different or something will go wrong during the procedure, but being able to have more quality on breathing has to be the better option, you know?


    Sent from my iPhone using Tapatalk

  5. Likes bobjannj, seied, Alysia, BenHornsby liked this post
  6. #4
    Join Date
    Jun 2012
    Location
    Stafford VA
    Posts
    160
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: My experience with SGS

    I too experienced the same except my airway ended up totally blocked and as a result I have a trach and the damage is to the point that it will most likelt be there for life. But at least I can breath.

  7. Likes BenHornsby liked this post

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
  •