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Thread: Tracheal stenosis and remission

  1. #31
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    Jan that is wonderful news! How is your foot/ankle doing?

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    Well, you know Sangye, the old saw is that if you have two rheumys in the room you have three opinions -- I wonder what the saw is if you have a rheumy and an ENT?!

    Clearly Lebovics trained with the 'giants' as he would call them himself -- Langford, Hoffman, Specks, and, as I have said previously, there's more of an more emphasis on the idea that immunosuppressants don't maintain remission and that once you get into remission it's essentially the luck of the draw whether your maintain it. I don't necessarily think that my rheumy buys that, and, in fact, just because something hasn't been proven, doesn't mean it isn't true. In a lot of ways, it's easier for the ENT to believe that isn't it -- he's the guy going into the fix the damage after the fact -- preventing the damage really isn't in his wheelhouse, and, in our cases, he doesn't have to think really hard about how the damage got there in the first place. He just has to be sure that nothing he does will make it worse.

    Elephant -- my ankle is improving. The upped mtx seems to be working, and PT is continuing to break down scar tissue. It's truly my only wegs symptom at this point, and as Lebovics ran through the 'classic' symptoms with me this morning -- I really felt damned lucky so say I had none.

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    That is wonderful to hear that you ankle is so much better. The ankle will be back to normal soon!

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    Both of my ENT's are very aware of the processes of Wegs and are very compassionate towards me. They always want to be kept up to date of my progress and symptoms.

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    I hope so elephant.

    Phil - WG sinus problems probably require medical intervention as often (if not more often) than surgical, so it's not surprising that if that's where most of your ENT trouble lies, they will track the systemic progression of your WG rather closely. I've only ever required surgical intervention, not medical, for stenosis.

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    I've never had surgery on my sinus or nose except when I was diagnosed and the ENT took a biopsy of my nose and cleaned out my nasal passages. I also had a biopsy again of my nose back in early June which I found out was unneccessary.

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    Hello Jan

    Glad to read you are doing so well - Sincerely hope it's the 'one and done' for you !

    Belated thank you for all the information you brought to us a while back.

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    So I decided I wanted to try to go for a jog today, since I've been feeling so good recently. The stenosis reared it's ugly head as I remembered. A bit of pain in the surrounding area and a massive amount of weezing

    So my question for those in the know. My TS is not getting worse, so I'm not progressing towards that magic 80% where they open you back up (I'm about 45%). It's got no impact accept when I sleep or try anything that gets me breathing hard. Is it reasonable if it's not progressing to get the procedure done so that I can do those things I can't currently, or am I crazy and opening myself up to problems?
    ~ Bob

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    Quote Originally Posted by Psyborg View Post
    So I decided I wanted to try to go for a jog today, since I've been feeling so good recently. The stenosis reared it's ugly head as I remembered. A bit of pain in the surrounding area and a massive amount of weezing

    So my question for those in the know. My TS is not getting worse, so I'm not progressing towards that magic 80% where they open you back up (I'm about 45%). It's got no impact accept when I sleep or try anything that gets me breathing hard. Is it reasonable if it's not progressing to get the procedure done so that I can do those things I can't currently, or am I crazy and opening myself up to problems?
    There is always a risk with surgery. It can make things worse due to problems in healing or scar tissue. A good surgeon will discuss those risks with you. Some will even refuse to do an operation unless they feel it is really necessary. What does your surgeon and primary Wegener's physician advise.

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    Quote Originally Posted by Psyborg View Post
    So I decided I wanted to try to go for a jog today, since I've been feeling so good recently. The stenosis reared it's ugly head as I remembered. A bit of pain in the surrounding area and a massive amount of weezing

    So my question for those in the know. My TS is not getting worse, so I'm not progressing towards that magic 80% where they open you back up (I'm about 45%). It's got no impact accept when I sleep or try anything that gets me breathing hard. Is it reasonable if it's not progressing to get the procedure done so that I can do those things I can't currently, or am I crazy and opening myself up to problems?
    I am of course unqualified to comment on the surgery but I will say bully for you for going for a jog!

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