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Thread: Stenosis Dilation Dilemma

  1. #11
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    I have tracheal stenosis and I think it's really frustrating not being able to to all the things I want to do because the shortness of breath. In my opinion it's better going through a few of these surgeries than not doing it. For me the surgeries are really ok, as I'm in quite good shape already a couple of hours after I wake up, my throat only hurts a little bit. Even though the stenosis may come back again after just a few months, it's really worth it. The positive aspects really outweighs the negative ones, at least that's what I think. I'm guessing that it's not that easy for you though, as you probably have to pay a lot of money for each surgery..

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    Thankfully that's not too big a concern for me right now. I'm more concerned with getting a net affect of worse stenosis than I have already.
    ~ Bob

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    Hello Bob,

    My name is Lisa. I was diagnosed with Wegs in 2008 and my symptoms were severe stenosis. (I was breathing through the equivalent of a stir stick opening and I was passing out continually) I ended up with a trach in for over 7 months, but now with the help of medications, especially that dreaded prednisone, I am trach free. However, I am not stenosis free. I still suffer and can relate to your aerobics dilemas. I too, if I push it too hard, tend to wheeze and huff and puff. I know that the stenosis that I have is partially related to my trach surgeries and the scraping of the scar tissue, which eventually creates more scar tissue. It is also related to inflamation when I tried to get off the prednisone (which only lasted a few days before I was back on). I have been taking 10 mg a day for over 2 years and I really dont see a chance to reduce it. I definately do not want the trach back, although it was relatively easy. For me its a cosmetic thing and I figure sometime in the future, I will probably end up with a trach again. Until then I do everything I can to keep away from that possible scenario. So my suggestion to you, if you should decide to accept it, is to first be sure your stenosis is not something that can be fixed or controlled with medications such as prednisone, then do what I do with exercise....take everything down a level from where you are comfortable. Exercise is exercise and so what if it's not what you have done in the past.
    It scares me at times to think that some time, somewhere my stenosis could worsen and it could worsen quickly and when you cant get air, then guess what your next step is. As my rheumtologist told me the other day...I have to be very aware of my symptoms and get help asap when needed.
    Best of luck! Lisa or Coffeelover

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    Thanks for that information Lisa, it's always nice to hear from those with more experience in this than me
    ~ Bob

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    I don't know what your doc is telling you, Bob, but for my subglottic stenosis, my doc (who is one of the world's leading experts in this) is pretty skeptical that medication controls it at all. They don't really know what makes it worsen, or not. For instance, I should have needed one, maybe two surgeries by now (my last surgery was in March 2010) but so far it has been just as open as when he operated. And I'm not on pred, just a pretty low dose of mtx.

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    I agree Jan! Please consult with an expert. I consult with my local ENT(who did my surgery, but is not a WEG specialist, another ENT from the Mayo in Rochester, who does specialize in WEGS, MN and my Rhuemy to come to the conclusions that I come to. Ultimately the decision is mine and part of my decision making at this time (since I am not in too bad of shape) is to avoid the surgery for monetary reasons. I have sucky insurance and would like to catch up from 2008 in my doc bills......But if I feel it is getting worse, I know that I can get in quick and move things along as needed. I hope you have these relationships with your doctors in case the need arises quickly.
    LIsa (coffeelover)

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    I'm seeing a specialist in Cleveland who works with the vasculitis team there regularly. I'm actually mostly going on what I see here at this point. My previous conversations with the the ENT have been to the affect of "when I'm ready". I felt generally horrible until the last month or so (so there is hope ), so I really didn't breech the subject. He said many with TS can't climb stairs without getting winded, unless I climbed 6 flights I'm pretty much ok, but like I said anything that really works me is out of the question. But I don't want to get stuck in a cycle of constant repeat surgeries sooner than necessary either. Not sure if that makes any sense.

    The biggest scare I had was when I got a chest infection in early January. I woke up unable to breath with gunk in the old trachea. Thankfully after a few seconds of panic I coughed it up. This aspect of the disease is kind of scary for me, as I have a stupid phobia of not being able to breath going back to when I was a kid. I had a ton of bad dreams that I was not able to breath. I had childhood asthma...so that's probably the source of the dreams
    Last edited by Psyborg; 02-15-2011 at 07:50 AM.
    ~ Bob

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    Has the doc made clear that you would have to have repeat surgeries. I know that this was my fear as well (although I didn't have a choice, mine had to be corrected or I would have ended up dead) but I'm coming up on a year with no repeat in sight.

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    No, in fact the implied it would be a one time deal most likely. I think that led me to be more confused as it seems pretty apparent that some folks end up getting repeat treatments, but obviously in your case it's the opposite so far (good for you ). I see the ENT again on 3/2, and I see my Wegs specialist this Friday, it's on my list to inquire about.
    ~ Bob

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    Quote Originally Posted by JanW View Post
    Has the doc made clear that you would have to have repeat surgeries. I know that this was my fear as well (although I didn't have a choice, mine had to be corrected or I would have ended up dead) but I'm coming up on a year with no repeat in sight.
    Don't you just love it when they make these treatment choices so easy. We do this or else..... Nothing to debate. Just pray it works!

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