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Thread: how many of us have saddle nose ?

  1. #11
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    I have it. I went 2.5 years without diagnosis or treatment for WG, with what seemed to be just a series of ear and sinus infections. This is very common. For me, it was plenty of time for the damage to be done, and I first noticed the nose right before diagnosis; in fact it was was why my ENT was sure I had WG, and that he had goofed up by not thinking of it as a possibility. He was very apologetic, and went ahead and did a nasal biopsy, which came back positive. That was in April of 2011, and I don't think my nose has changed, even though a lot of bone erosion has gone on in my sinuses and nasal cavity since then.
    Anne, dx'ed April 2011

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    thanks for replying. so far: 4 have it. 4 not. we need more info.....
    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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    I don't. Phil I'm sure you're still handsome. Anne, it still shocks me that an ENT could overlook the possibility of this disease! I'm glad you didn't suffer any worse damage while awaiting a diagnosis.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  4. #14
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    Quote Originally Posted by LisaT View Post
    I don't. Phil I'm sure you're still handsome. Anne, it still shocks me that an ENT could overlook the possibility of this disease! I'm glad you didn't suffer any worse damage while awaiting a diagnosis.
    I understand your shock, but I have heard this story over and over again. They see so many people with these recurring sinus infections, and even worse problems than what I had, simply resulting from allergies and poor structure such as deviated septums. I was found highly allergic to many pollens and molds, so it was pinned on that, and I got shots for a year and a half. My big ear infection at the beginning should have been more of a clue, though, followed by all that other stuff. But Wegs is very rare, so they consider it to be unlikely if they think of it at all. That may be changing, as it seems to me there is more awareness about it, thanks partly to entities like this forum. My ENT said he recently got another WG patient, making it three for him. I don't know if he dx'ed this patient, but I certainly believe he will be quicker to clue in to this now.
    Anne, dx'ed April 2011

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    Quote Originally Posted by Alysia View Post
    Hi,
    Phil wondered about it in another thread, so I though we can "collect" that info here.
    I do have it and it started about 2 years of having WG without getting proper treatment. it became more obvious after 4 such years and stopped "moving" after getting the rtx.
    I only saw for real one girl with saddle nose, and she happened to be a weggie.
    It makes me sad sometimes. it's another loss due to WG. but I am getting used to live with it. not sure about surgery. sounds scary
    Hi Alysia, I know any surg sounds scary. I wouldn't have it unless it was totally flat (like mine was) It was hard to breath, and totally scared kids and people stared at me. But if you decide to have the surg. be sure to let your Dr, know that you want him to use something "plastic" or other item they use in surgery. If he tries to fix it with ANY of your flesh (cartlidge) or even someone who has donated cartlidge that does not have wegeners, YOUR wegeners will completely destroy it within months! I have a piece of plastic in my nose that HAD cartlidge from one of my ears on both sides of it. It was fuller after the surg. and started getting smaller as my cartlidge was taken by the wegeners. But the little plastic was enough to just look "normal" enough for me to be happy. Just a little tidbit of my experience. Any questions, just ask! love Ya <3
    Life is a Gift~ Lilly

  6. #16
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    I have it. Got it in 2011 (7 years after dx). Don't plan on surgery as "luckily" mine was not so bad and did not affect my breathing etc. Have got restylane fillers to correct it cosmetically, and am very happy with results.
    I am surprised Lilly that they used plastic in your surgery. I always thought this was not done as it could cause a flare. Anyway, glad that you are happy with the results. It looks great in your pic :-)

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    No saddle nose though the ent says I have a mildly deviated septium and several senecia <spelling> formed in my sinus cavity. That causes its share of issues with breathing especially when I wake up with a full sinus that I have to try to clear out around them.

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    Quote Originally Posted by chris.wg View Post
    No saddle nose though the ent says I have a mildly deviated septium and several senecia <spelling> formed in my sinus cavity. That causes its share of issues with breathing especially when I wake up with a full sinus that I have to try to clear out around them.
    Does the ENT say your deviated septum is caused by Wegs? I have heard a few on here talking about their noses becoming crooked, but not saddled. I already had a mildly deviated septum, as do most in my family and, I have read, quite a few people in the general population. It wasn't causing me much problems with breathing, unless things got totally clogged, and neither does my saddle nose. Just curious if this is another side effect of Wegs; seems like it could easily be.
    Anne, dx'ed April 2011

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    Quote Originally Posted by Yvonnea View Post
    I have it. Got it in 2011 (7 years after dx). Don't plan on surgery as "luckily" mine was not so bad and did not affect my breathing etc. Have got restylane fillers to correct it cosmetically, and am very happy with results.
    I am surprised Lilly that they used plastic in your surgery. I always thought this was not done as it could cause a flare. Anyway, glad that you are happy with the results. It looks great in your pic :-)
    I have always read on here that any type of artificial fillers or plastic are not good in saddle noses with Wegs for the possible flaring problem. I don't know what restylane is, though, and would like to know more. Probably the only way I could ever afford to get mine fixed would be with a filler type of method that doesn't involve surgery. I have no problem with breathing, it would just be cosmetic. And as for using cartilage, I've heard of several on here who have not had the new cartilage eaten away and have had good results with that. I'm sorry that didn't work for you, Lilly, but glad the plastic does make you feel OK about your nose. It looks good in your pictures.
    Anne, dx'ed April 2011

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    Quote Originally Posted by LisaT View Post
    I don't. Phil I'm sure you're still handsome. Anne, it still shocks me that an ENT could overlook the possibility of this disease! I'm glad you didn't suffer any worse damage while awaiting a diagnosis.
    One more clarification here, Lisa; I was not awaiting a diagnosis. I thought like the ENT thought that I had severe allergies and chronic sinus issues related to that. When my lungs got bad was when someone mentioned Wegs and the dx by nasal biopsy came soon after that, just after I noticed the nose. I wish I knew for sure when the nose dropped! But I don't, and no one mentioned it; my glasses hide it pretty well. I noticed it by running my finger along the bridge of my nose, and not by seeing it. That doesn't mean it isn't ugly, especially from some angles.
    Anne, dx'ed April 2011

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