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Thread: Saddle-nose

  1. #11
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    Interesting how some of us did not even notice when it happened. I guess I don't look in the mirror nearly as much as when I was younger. I barely have any mirrors in my house. If I didn't wear glasses, I probably would have noticed it. I first noticed it by feeling the bridge of my nose with my finger, not by seeing it.
    Anne, dx'ed April 2011

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    i had issues w nose becoming larger on one side (hard not to notice). then it began to collapse (on side more than other). now other side collapsing too and bottom of nose turning to left. its such a mess however its not painful. there us nothing left inside nose.
    Smile, breathe and go slowly. Because of your smile, you make life more beautiful. Thich Nhat Hahn

    dxn 11/13

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    Hi,
    saddle nose... a painful issue
    saddle nose is not happening just like that. it is the result, at least in my case, of months and years of endless inflamations in the nose: boogers biggers then those on Andy's thread and a lot of bleeding and pains.
    at first there was slight change, near the glasses line, 4 years ago. I though it was because of new "heavy" glasses (glasses must be as light as possible not to burden the poor nose).
    then in the past year when my wg became more "aggresive", my nose started to collapse in a way that was obvious. it took couple of months of "falling" and was scary feeling helpless and depressed
    RTX stopped the inflamation, but the collapse continue a bit after. I think it stop collapsing now.
    I found an ENT who knows wg and he said that one day I can do a surgery to my nose. not yet, untill there will be no more inflmation. new nose can also collapse if there is still wg activity inside.
    sometimes I hate my new nose sometimes I can like it
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #14
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    Oh noses, they are such temperamental creatures, aren't they? I hate mine. I've hated it forever but lately, our relationship has become less love, more hate. One day I'm horribly congested, the next? I can breathe. When I breathe in, one side closes up, randomly I get the weirdest sharpest pain like someone just rammed a rod inside it and yanked it out. Just one random pain. Then, it hurts all the time. Some days, it's like a hollow cavern ... others it's like a cavern with many stalagtites/stalagmites. It feels like there's an ant walking around in there. I'll pull out something clear and then ... randomly, I'll itch my nose and discover it's full of bloody chunks and there's blood spilling down my face.
    Often I wish there was bi-polar medication available for my nose.
    I obsessively look at it. It is slightly different ... and I dread the day it becomes visibly different to other people.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  5. #15
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    Wow, Nikki, your nose really goes through some gyrations! But if I remember right, your diagnosis wasn't as delayed as some of ours... my saddle nose developed after 2 years or more of undiagnosed Wegs activity. So I'm hoping that yours will behave itself now that you are getting proper treatment and the progress of the disease is being slowed way down. I pray that it does not change enough for people to notice.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    But if I remember right, your diagnosis wasn't as delayed as some of ours... my saddle nose developed after 2 years or more of undiagnosed Wegs activity.
    and mine was develped after years of being dx but without enough "strong" treatment.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    hi nikki i totally identify w your post. such a descriptive portayal of what i deal with. its crazy how my nose changes hour by hour. rare times irs not bothering me i just worry what is going to happen next.
    Smile, breathe and go slowly. Because of your smile, you make life more beautiful. Thich Nhat Hahn

    dxn 11/13

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    My nose is acting up the same way! Oh no, does this mean the meds are not working properly and a collapse is eminent?

  9. #19
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    My nose is sore just inside the right nostril today so I made an appointment with my ENT for Jan 8th. That is the earliest I can get in unless I want to travel 3 hours one way.
    Phil Berggren, dx 2003

  10. #20
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    Quote Originally Posted by Marius View Post
    My nose is acting up the same way! Oh no, does this mean the meds are not working properly and a collapse is eminent?
    Keep in mind that my saddle nose developed without any particular aches or pains or noticeable changes in advance. Just lots of mucus from what I thought were recurring sinus infections. So the pains could be from something else related to the whole process, like severe crusting, polyps, ulcers, obstruction from inflammation, and not directly from the septum having a hole in it or the cartilage becoming detached. Mine developed when I wasn't being treated for Wegs yet. If you are, then I'd suspect you have a better chance of avoiding it. I really can't speak for anyone else, though, because everyone's case is different, and if you are seeing outward changes visible in your nose, then I suppose there is a chance. If it happens, it isn't the end of the world, but I hope it doesn't for you, Nikki, and others who don't have it yet. Definitely, not everyone with sinus involvement gets saddle nose.
    Anne, dx'ed April 2011

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