how many of us have saddle nose ?

[Alysia]

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

thanks for sharing, Lilly that is intresting that you have a "plastic" inside and feel well. from the outside you just look great
if I will go for a surgery one day, I will check with you about more details.

[Alysia]

. Have got restylane fillers to correct it cosmetically, and am very happy with results

thanks for sharing what are those ?

[annekat]

Jolinda, just looked at your saddle nose pics on your profile. The only one of the two that I was able to enlarge was the one with your glasses on. The nose looks cute with the bridge part covered up. I think it's pretty similar to mine, which is just a little more turned up than I'd like it to be, but not too bad.

[LisaT]

thanks for sharing what are those ?

restylane is a filler like botox that is injected, at least when it's used as a wrinkle filler. I'm not sure what the procedure is to fix saddle nose. I tried it once for the deep line from nose to outside of lips. (has a weird name like nasolabial fold or something like that; I call them jowls…) It worked well at first, then seemed to lose the effect way sooner than it was supposed to. I normally don't do and won't do any sort of cosmetic surgery or injections; decided to try that one because a friend of a friend was bringing her supplies and doing it at a friend's house for a group discount. Couldn't resist as the 'jowls' bug me. I've since decided to live with them like everything else that seems to be changing. I feel like my immune system has enough to manage without injecting unnecessary foreign substances. (Totally different considerations when it's for reconstructive purposes; I can understand wanting to fix saddle nose. For me, the wrinkle stuff seems like too much toxicity for vanity's sake.)

[Lilly]

Hi Miranda. I am extremely proud that you all can deal with the saddle nose so well. I wish I had been. I think I had it for awhile, my nose was changing. It was very long and so it wasn't that noticeable. But it was to me. But the day I literally woke up, and it was totally flat! I think I slept on it funny on my pillow, or something, but it just kind of completely "fell" into my face. I don't think I was really caring how I looked as much as it cut off my breathing so much. But I am not sure what the Dr. used in the second surgery to hold my nose up. Someone had mentioned that "plastic" would cause a flare. So I am sure he used something that plastic surgeons use that our bodies will not reject. So far so good! Everyone on here that has saddle nose looks great! I wouldn't do it unless it was interfering with your breathing. Oh, Mom and I got our Wegerners Shirts yesterday! It has the red ribbon on the front, and all the symptom on the back. It is so nice! The shirt itself is of great quality! Its thick T-shirt material, not thin. For only $10. its a great way to spread the word about our dz! Love yall, :-)

I have it as well. I got is right when i was diagnosed pretty much. 2008. Its part of who we are

[Gragnoc]

With all of the sinus involvement I have experienced that past 15 years. I am very surprised that I do not have a saddle nose, but my sinuses do not drain properly and have to do saline irrigation constantly to clean out all of the junk.

Alysia, I saw your profile pic and I think you look beautiful!

[annekat]

Lilly, I think it is obvious that your nose had to be fixed and I'm glad they went ahead and used the plastic after the cartilage didn't work. i don't think everyone's cartilage will get eaten up in this scenario, but yours did because everyone is different. I know they warn against the plastics and artificial materials for Weggies especially because of it possibly triggering a flare, but you are a case in point that it will not always happen and some of these warnings we hear may be a little overly stated. I'm glad it worked out so well for you. I do also hear that we should be in remission before any such surgery, and guess I'd go along with that.

Alysia and Lisa, I was PMed by Yvonnea who uses the restylane in her nose, and she says it is made from a substance that our bodies naturally produce. I'm not sure what that means, and more research would be needed. She says she must have it redone every few months but is otherwise very happy with it. Perhaps she will respond here, too, with better info than what I can give.

[annekat]

With all of the sinus involvement I have experienced that past 15 years. I am very surprised that I do not have a saddle nose, but my sinuses do not drain properly and have to do saline irrigation constantly to clean out all of the junk.

Alysia, I saw your profile pic and I think you look beautiful!

I'm not sure how it all works, but maybe the problems are staying in your sinuses because they are so blocked up, and not occurring as much around your septum. And maybe you have extra strong cartilage there, compared to some of us. People on here can testify to the fact that lots and lots of saline irrigation can prevent a lot of damage, so keep that up, and I hope you see some improvement soon!

[Yvonnea]

Some folks here asked for a little bit more info. on restylane to correct the appearance of a saddle nose.

"Restylane is a crystal clear gel that is injected into the skin (or for some treatments just under) in small amounts to restore volume and structure. It is based on hyaluronic acid, similar to the body’s own hyaluronic acid that diminishes as we age. The hyaluronic acid in Restylane is non-animal which means that no skin tests are needed and that there is a minimal risk of allergic or hypersensitive reactions".

I get a product called Restylane Perlane as it is more suitable for the nose area.
It takes less than 10 mins and the results are immediate.
It is expensive, One injection costs about 350 euro and lasts at least three months but that depends on the individuals metabolism.

I have had no problems in the three years I have been getting these fillers. I discussed and researched it thoroughly with my ENT, and now go to one of the top plastic surgeons in Sweden to administer it.
Happy to answer any questions.

Yvonne.

[Gragnoc]

I'm not sure how it all works, but maybe the problems are staying in your sinuses because they are so blocked up, and not occurring as much around your septum. And maybe you have extra strong cartilage there, compared to some of us. People on here can testify to the fact that lots and lots of saline irrigation can prevent a lot of damage, so keep that up, and I hope you see some improvement soon!

Thank you Anne. I appreciate the encouragement.