saddle nose

[mama2005]

Has anyone had surgery to fix the saddle nose? My doctor said that I can have it done after I am in a strong remission for three months. I know it may be a long wait from now but let me tell you I want to look and see the old me. I was wondering if it is worth the surgery.

[pberggren1]

Mama, if you can breath through your nose without too much problem then I would not have any surgery done to fix the saddle nose. I have seen 7 different ENTs over the years and they all told me not to have it done if I can breath through my nose OK because the surgery itself could easily trigger the Wegs to come back.

[mama2005]

Thank you, I can breathe sometimes. they said they can't fix the damage inside but can on the outside. I hate my nose but don't wanna flare anything either thanks for your advise.

[pberggren1]

You are most welcome. I just don't like to see people get unneccessary sugery done if they don't need it, especially in our cases when it can cause a flare.

[freakyschizogirl]

Hey mama2005 i have the same dilema.

I cant stand looking at my nose in the mirror or reflected in shop windows, i dont like photos being taken either.

I could have surgery too, and for me i think looking like my old self again is the biggest bonus. Yes, i can breathe through the saddling but i also have a spetal perforation.

Its like cutting your nose off to spite your face. You have to way up the risks and benefits for yourself. I had 2 nose biopsies. After the second i woke up hysterically crying cos i just dont like the ordeal of being put asleep and have someone fiddle about with you nose. That said, i dont wanna walk around for the rest of my life looking like i do now either! It definately impacts my self confidence.

When i am stable and in remission long enough then my ENT will talk to me about my options. Right now he wont even think about it.

Only worry for me is, after its fixed and looking normal again - it could saddle and collapse again.

Good luck with whatever you choose Mama.

[mama2005]

I have the perferation also and I do truely hate the way I look. I have not had a picture taken of me for two years because I hate that I have no bridge of a nose. I am not in remission so I have tme to think but I also don't think I wanna chance losing remission.

[freakyschizogirl]

I know its cosmetic and vain but i think ultimately i will have the surgery...when it comes round to it.

I've been single for nearly a year now and i think to myself..."Who's gonna want me with a nose like this? And not to mention the disease." I know how silly it sounds but it really has knocked my confidence, I was never much of a looker anyway but the nose isn't helping!

[JanW]

Phil, I must respectfully disagree with your doctor here. My doctor, Lebovics, does many of these surgeries, and the idea that it would trigger a flare as a reason to do it doesn't enter the picture. Research has never proven what may or may not trigger a flare definitively, and doctors who see these kind of deformities all of the time recognize how horrible it can be to one's self esteem. There's no question that many (most?) can breathe through a saddle nose but it is EXTREMELY disfiguring (speaking as one who has one), and even if it isn't that obvious in person, it looks horrible in pictures, when you are on video etc. The surgery isn't even risky (they will generally take a piece of cartilage from within your body -- some docs do it with artificial cartilage but the experts know that it is risky introducing that to a WG patient), recovery is very easy (hurts more where they remove the cartilage, not much sensation where they put it).

Lebovics showed pictures of saddle noses during his presentation at the Symposium and most of us in the audience (who, by the way have saddle noses), were trying hard not to gasp. He went on about the fact that the nose is the most prominent thing in your face, and all of the horrible things that his patients have heard over the years (e.g. the nursery school teacher who was called a 'monster' by her charges, the woman who was told that she should stop having her husband beat her up, and, of course, my favorite, the assumption that you collapsed your own nose by doing coke).

The major risk of course is that the nose could collapse again if you have a flare.

I'm glad that yours doesn't bother you, but I wouldn't put it in the category of 'unnecessary' surgery at all. I think it is quite necessary for some who wish to live a normal life with this disease.

[Shannon]

Hi! This is my first day joining this WG Forum and I am so glad that I saw your message. I had a very bad saddlenose deformity from the cartilage being destroyed in my nose. I had it fixed once and the ENT used cartiladge from my ear and it failed almost immediately. I was very gunshy after that but the breathing got so bad through my nose that I was given the name of highly renowned doctor at the University of Michigan named Dr. Shan Baker who specializes in facial reconstruction. He is well known for working with WG patients and told me that the other doctor made a mistake using ear cartiladge because it is too thin and WG flares would wear it out, like it it. Dr. Baker explained that if you use cartiladge from the sternum it will last for years and years, if not a lifetime because it is the strongest cartiladge in the human body.

In March 2009 I had the nose rebuild done. They harvested extra cartiladge and sewed it just under my scalp so I wouldn't have to go through another painful procedure if they needed to go back in. They put the cartiladge in place and then put a titanium cover over that. You can't tell that I ever had a problem with my nose and my nose looks just as straight and normal as it used to.

It has been 2.5 years now and I think I could actually hurt someone with my nose it is so strong. It changed my life. I can breathe, I don't have all the questions about my nose, and it just gave me a feeling of fighting back a little.

I have before and after pictures. If anyone would like to see them I will be happy to email them. Like I said, this is my first day ever using this forum (I can't believe I didn't know about all this time) so I'm not sure how to post pictures, etc.

I know it's scary. I was terrified that it would fail again and that at only 46, at the time, I would have to live with a saddlenose deformity the rest of my life. Have hope!! This doctor was awesome and really knew his stuff.

[Shannon]

I forgot to mention in my post above about the rebuild of my nose...for several months before the surgery I had to stop my Methotrexate so that my immune system wasn't depleted at all. They restarted it about a month after the surgery. I didn't have any flare-ups as a result and being able to breathe through my nose reduced the number of sinus infections I was getting.