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

  1. #91
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    Vdub - I have seen an ENT/ who specializes in airway issues for a problem that was not related to stenosis. Is there someone else that you can see? I try not to "hate" or spew venom but don't I hate this disease and what it does to us. Sorry you are going through this - truly.

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    Thanks for forwarding the study, Tom.... Very interesting -- I read it several times before I totally understood what was going on, but pretty much figured it out. The odds certainly aren't in our favor. I'm guessing rtx is in my future.

    I am determined to take my rv to SoCal soon so I can see my first grandchild, so I'm hoping that a couple months delay in treatment won't hurt anything. That having been said, I know things are getting worse quite rapidly. Walking short distances is becoming more difficult. Even just sitting is sometimes a strain.

    Yeah, it sucks....
    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....

  3. #93
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    I have had dilation several times. More than a couple of years between each time. I consider it to be a really easy procedure with a huge benefit. Not only does it open the airway but the injections of steroids and application of mitomycin C may help quiet the disease process- the jury is still out on that but I suspect it helps. The risk is minimal.

    It is outpatient but I am required to have a driver and someone is supposed to stay with me that night in case I have some adverse reaction. The only reaction I've had so far is to be able to breathe much better.

    I just saw my doc today about it and will be having the procedure again very soon.
    If it is possible for you to do it sooner that's what I would do. That way you feel better just that much sooner and get back to being more active which will be good for general health of course.

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    Quote Originally Posted by vdub View Post
    I dropped by the ENT and picked up a video of my subglottic stenosis. Below is a picture of it. I guessed it was maybe 15%, but as I look at it, it might be a bit more. I know its getting harder to breathe.

    Subglottic Stenosis picture (click)
    That's interesting, hope I never get it. Oh, "Damn that sucks".

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    Quote Originally Posted by vdub View Post

    That having been said, I know things are getting worse quite rapidly. Walking short distances is becoming more difficult. Even just sitting is sometimes a strain.
    If your symptoms are rapidly worsening, it could be worth it to squeeze in some treatment before your trip to SoCal. My ENT always treated the SGS as a pretty serious matter and more than once mentioned how she didn't want to risk the airway closing to a point where I couldn't breathe.

    Subglottal stenosis is no fun whatsoever. I really hated feeling limited by my breathing and I had a good deal of anxiety about my airway. It certainly isn't the best location for Wegs to flare up. I hope your vacation plans aren't affected by this! I hate when treatment interferes with life.
    Diagnosed October 2012

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    which will be good for general health of course
    Not to mention the all important mental well-being....

    I think all of you have given me some pretty good advice. I'll probably start pushing a bit harder for appts....
    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....

  7. #97
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    Just catching up on this thread, I really hate this disease. Dub, I would feel better about it if you went for treatment before SoCal trip.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Most definitely sucks. But it sounds like there is a range of procedures that can help you. If I were in your shoes, I would address this asap so you can travel and enjoy your family without having the issue looming and no idea of when it may turn into something more emergent. Sounds pretty bad already the way you describe it. So sorry you are having to go through this.

    One of the interesting bits in that study is that SGS seems to arise independently of any other WG activity and often while the patient is otherwise in remission. More and more, I get what my doctor meant when he said this disease is "treacherous."

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    Vdub, hello. You probably were hoping to get away from the weg dog, as well as all the doctors, in so cal, but Vdub, the dog, goes there also, while you leave you're doctors there. He can't go to bora, bora, but all other places are fair game! Please get this looked at, as you don't want this to ruin you're trip, as well as put you in danger... If God forbid, something should happen, then its no longer a trip, its a nightmare... Interestingly I was just reading the thread again, on the nicotine prevention link, where the poster said nicotine prevents the furthering of this. I will stay completely silent on this one, as I seem to rile up some here!!! Haha... For real though, Vdub, please get this checked... I'm sorry all this is happening to you, it truly is a sucky sickness, with an EXCEPTIONAL, suck factor.... Debra...
    Live,love,and laugh...

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    debra, did you ever receive an official diagnosis? I read through your posts and it seemed like nothing definitive came from your appointments. I would have asked on your thread but it has been closed.
    Diagnosed October 2012

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