how many of us have saddle nose ?

[Jayne 14]

Hi PJ2010
Welcome to the gang , my odd nose helped me get diagnosed ( ha nose in that word !!! )
So although it's not so pretty it helped me not get any worse
Good luck x


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[Alysia]

counting so far: 14 don't have it.... 13 do.
never too late to write on this thread.....

I am now with Phil at Foothills hospital, so one of the docs asked him to tell the residents about vasculitis. They had the opportunity to see for real, first time, not only one saddle nose, but 2

[annekat]

Hi. Probably a little late.
I also have saddle nose. When it happened it was so sudden I was shocked.
My normal dr asked me if I had broken my nose. It happened in the week I was hospitalised nearly blind and the specialists were carrying out all types of tests and biopsies. An ent dr drove a rod with a camera up both nostrils into the sinus area (without any anesthetics). I seriously though he broke my nose.
Much later I was told it was damage caused by wegeners.

Same here; I had just been in the hospital overnight for tests, the doc had mentioned the possibility of Wegs after seeing my lung CT scan. But no one said a thing about my nose, so I don't know if it had happened yet. I do wear glasses, which sort of hide it, but I'd think they could have been more observant not only about that but about all kinds of weird feelings and tightness around my whole eye area. I noticed the saddle nose very soon after arriving home, maybe not the same day but possibly the next one! I do not look at myself in the mirror much, and when I do it's with glasses on, usually. I found the saddle nose by running my finger along the bridge of my nose.... something did not feel right! You can bet that then I got out the set of two mirrors so I could look from the side. Very weird looking. I went to my ENT for a nasal biopsy, which was positive, but he pretty much knew when he saw my nose that I had Wegs.

[PJ2010]

That's unreal. Maybe when we were in the hospital the WG was at its worst.
I still remember I was on the eight floor and I smoked. I was blind in one eye and had 30 percent vision in the other. I realised that if I worked my way out of bed around the wall into the hallway that there were lines on floor. If I held the handrail and followed one of them I could find myself at the ambulance entrance where I could have a smoke.
In the lift there was stainless steel panel. I saw a reflection of myself in it. OMG!!
I looked like something from a horror movie. My left eye, the eyeball was being pushed out of the socket, was bulging and the pupil was looking up to the left. My whole facial appearance was frightening.
By the third day in hospital, because I'd mastered this practice, the nurses started quizzing my room mate. They didn't believe I was virtually blind. Lol

[annekat]

Wow. You were a lot worse off than I was with the bulging eyes, blindness and such. Did the blindness and bulging eye clear up, or are you still at least partially blind? I can't pin the saddle nose on anything they did at the hospital, as far as helping it along, because they really didn't do anything to my nose or facial area; they were concentrating on my lungs, and I did get some nebulizer treatments, but that was about it. True, though, the Wegs was reaching its peak if it hadn't already; I'd been struggling for weeks with lung issues and finally went in when it got bad enough. The nasal and sinus stuff had been going on for a couple of years, and did get worse around that time.... I really have no idea when the saddle nose developed but I'd think someone would have noticed it, but maybe not if they weren't thinking of WG and my glasses were hiding it. I think I would have noticed it, though, so it couldn't have been there for too long.

[PJ2010]

Yes Anne. Thanks to the Eye and Ear Hospital in Melbourne. They were incredible and so professional.
After 5 days of tests they sent me home. A week later I had to go back for the results. As soon as I walked in they admitted me back in and for the next 3 days I was given 1000mg of predisolone a day.
They kept monitoring my vision all the time. By the time I had received the third dose 70 percent of my vision had returned.
Unfortunately I still had crossed vision.
I was so afraid of blindness. They said if I was to totally loose my vision they would not be able to do anything about it.
The damage would have been permanent.
The following day was the day I suffered a burst stomach ulcer. The treatment they gave me causes a massive increase in blood pressure and normally they check to ensure you have no ulcers before treating but I think the pressure was on to save my vision.
Today, my eyes are constantly sore with WG but I have 20/20 vision.
Thank god for the Eye and Ear hospital and staff.

[annekat]

I'm happy to hear that you got all your vision back! Also happy that Michelle has discovered your proximity to people and doctors she knows of, and that you appear to be in very good hands!

[Bing505z]

No saddle nose here

[Victoriaitsnosecret]

I noticed my nose before I noticed anything else. Started as what appeared to be a bump but what was really the cartilage wearing away. It's not too bad. Only I could tell at first now other people notice it if I don't have my glasses on. Look at me head on and you might notice it. It's very noticeable from the side view. PS I had a very cute nose! 😞


😃 victoria

[annekat]

I noticed my nose before I noticed anything else. Started as what appeared to be a bump but what was really the cartilage wearing away. It's not too bad. Only I could tell at first now other people notice it if I don't have my glasses on. Look at me head on and you might notice it. It's very noticeable from the side view. PS I had a very cute nose! 


 victoria

Your nose sounds just like mine, hidden pretty well by glasses, worst view is definitely from the side without the glasses! I noticed mine suddenly and that was what told me I had Wegs, which had already been discussed as a possibility, and I'd already done research and was reading the forum, so you bet, I knew what that was when I felt it with my finger and then looked in the mirror.