how many of us have saddle nose ?

[cjhnsn29]

I also join the saddle nose group. I wear glasses helps. It's noticeable. Mine also started 2 yrs ago. ENT has me irrigate 4 times a day so it doesn't keep getting infected.

[gilders]

No saddle nose for me. Nose bleeds, crusty scabs, huge bogeys, frequent sinus infectious, but luckily no saddle nose.
Pretty impossible to see how ill I am from the outside, I just appear unfit and overweight.....if only they knew!

[cjhnsn29]

Putting my two cents in ha! My ENT was the first to diagnosis he didn't have a lot of proof till now. Every Drs on the same page now.

[Mas78]

Gilders it sounds like we have even more in common, I don't have a saddle nose either. I don't get many sinus infections but the rest sounds familier.

[Jules]

After my first six weeks in hospital (during which time I chose not to study too closely the person in the mirror that was a shadow of my former self!) I had no idea my nose looked any different. It was only my rheumatologist saying "your nose has confirmed my hunch that this is Wegeners" and my husband nodding in agreement (he was being his usual lovely self and trying not to bother me with any more than I needed at the time!) that I ran my finger over the bridge of my nose. I was told I could have it corrected if I wanted to but, to be honest, it's not too bad and I've got used to it now . . . no-one that's near or dear to me is bothered, so I figure "why should I be?".

[aewaustin]

I have saddle nose, not to bad yet, but I do have two holes in my septum. Going in Wednesday to get a stint put in to help me breathe as my nose is starting to fall apart. Nose surgery is in my future to rebuild it

[Velma]

I do.. it began about 2 years after first diagnosed and was on cytoxan and then switched to methotrexate. I had it repaired by using my rib bone for the bridge. It has fallen some but looks better than it did before the surgery. I have the wonderful preddy face in my profile pic here. I get asked all the time if it is broken and I say yes and then change the subject. Yet another reason why we are destined to be different.

[kaysee]

So far I'm good too, despite the many sinus issues I've had. I've always had allergy related sinus problems, so in the past two years with WG (but yet to be diagnosed) I just thought I was having allergies. When I started having bloody nose frequently I realized it was not allergies. Yet another of my many weird symptoms that I could not connect.

Karen, dx'ed April 2014

[Alias]

I've escaped so far. The scarring has pulled my septum area slightly to one side, which is barely noticeable, and there are no perforations. I know I am lucky. In a recent appointment, the rhinologist said surgery to correct the scarring could make things worse rather than better, so I am fine with that, even though my breathing is sometimes quite compromised.

[MikeG-2012]

I have the start of a saddle nose. My septum looks like Swiss cheese. Doctor said it can be repaired if it gets too noticeable or starts to affect the airway.