nose surgery

[Tasha]

Hi, I am new on this forum. I am 45 and four months ago diagnosted with WG. I have also saddle nose and want to have nose surgery after I will be in remission for some time. I am from Europe - from Slovenia. This is small country - only 2.000.0000 citizens. I can not find anyone here who had this surgery. Also surgeons in Slovenia do not do nose surgeries on WG patients. Please let me know if who of you had nose surgery and tell me all about... I am prepare to go abroad.
Thank you!

[Pete]

Hello Tasha,

Here is a link to doctors who specialize in treating WG/GPA Vasculitis Foundation » VF Medical Consultants (http://m.vasculitisfoundation.org/?task=get&ihash=ccd56128ea&url=http%3A%2F%2Fwww.vasculitisfoundation.org%2Fmc m_resources%2Fmedical-consultants%2F). You may want to consult with one and get examined. They can then decide on when you could have surgery and refer you to a doctor who can do the surgery.

[Tasha]

Thank you! I really hope to have a chance to have a nose surgery...

[LaurenGoodwin]

hi! seems that you were just diagnosed with WG. let me say it is a vicious cycle and a long process! i am not yet in remission but i also have the saddle nose. I was eager for surgery and to find out when i can have it but came to realize its not any time soon. every one is different! but i just wanted to let you know about my nasal prosthetic! its completely weird lol but its amazing and it is a great temporary solution until you hit remission and can have surgery! its a silicone nose and looks completely real its scary lol. it was made with a 3D printer and glued on with adhesives!

[Yvonnea]

Tasha,
I developed saddle nose six years ago after a bad flare. I started getting restylane fillers to improve my nose cosmetically. I was only just back into remission (on low dose of prednisone) when I started getting them. It is only a temp. solution (as the filler breaks down after a few months). However, I am so happy with the result, I decided against going for surgery. Maybe after talking with your Doctors, this could be an option for you? Wow, Lauren, never heard of using prosthetic noses. Do you mind me asking if your saddle nose was very bad? Luckily mine wasn't and that is why I use the filler, but if sometime down the road I needed this, it would be good to know.
All the best,
Yvonne

[LaurenGoodwin]

I've actually never heard of those filler I'm going to have to look them up! I would show pictures I'm new to this forum so I'm trying to figure everything out ha. um i might say it is bad? my bridge is gone but i also had a big nose before all this ha. i also have a deviated septum so with that combination i would need to have surgery when i go into remission. the nasal prosthetic could have gone two ways one being just a lil piece that goes over the bridge of my nose or the other being getting an entire prosthetic nose. i personally didn't like the look of the partial bc the hole idea is try to look normal again and it didn't work for my nose. so i got the entire nose! i use adhesive to attach it during the day. if you were to stare at me really close you can clearly see it but if i wear glasses or take pictures (which was my main goal ha) you can't see it at all! overall lm very pleased with it. its extremely weird but i rather this than a saddle.

[Tasha]

Hi Lauren,

It is amazing! I did not know for that kind of solution! Please tell me more. I am eager for surgery too! This is really great temporary solution. Could I get some contats of your surgery? Please tell me where did you do that? ANd how muc did you pay?

[annekat]

Lauren, I have searched on prosthetic noses and nose bridges and never came up with much... I also wondered about the kind of stage makeup, putty, or whatever, that they use to change the shape of people's noses. I could search again, but wonder if you could share any sources for these things, or search terms I might use. I'm also interested in the restylane that Yvonnea mentioned, and have researched that a bit. I'm 64 years old and wear glasses which hide it somewhat, so it's not that big a deal, and I doubt I'll ever get the surgery, but I'd still like a more normal looking nose so am interested in these things. Money will always be an issue, unfortunately.

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[LaurenGoodwin]

hi! i went to Home - Medical Art Prosthetics (http://www.medicalartprosthetics.com) !! so its a silicone nose he makes with a 3D printer (crazy technology these days) ! this particularly is called a nose prosthetic. I am still going through the insurance process to get reimbursed but it should be covered 100% by insurance because saddle nose is caused by a disease. wearing glasses with this prosthetic is actually recommended! although its pretty darn close to it, its not UNnoticeable. its a great solution especially bc i am not in remission and can't have surgery yet. the nose is put on with adhesive glue. and then taken off to be cleaned at night. theres two options. 1 being a partial prosthetic where its just the bridge of your nose and 1 being one that covers your hole nose. i chose to cover my hole nose bc WG kind of made my nose crooked and this was a more normal looking option for me. i have freckles, and he was somehow able to add freckles to my nose too! i defiently recommend it. it made a difference in my life i feel better about myself I'm able to take pictures again and i don't get many crazy looks anymore.

[LaurenGoodwin]

i have edited my profile and put pics up! (some are sideways i don't know how to turn them ha)

[annekat]

Thanks, Lauren, for posting that info and the pics. Your saddle nose looks a lot like mine. The prosthetics look great. I'd probably opt for just the nose bridge, for myself, and my glasses would help hide it. From previous discussions on here, I've gotten the idea that most insurance, at least Medicare, which I have, won't pay for the surgery unless the damage is preventing one from breathing through the nose. It would be nice to be wrong about that, and maybe it would be different in the case of prosthetics, since the expense would presumably be less.

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[LaurenGoodwin]

what! I'm under the impression it will be covered ill have to look into that but I'm no where near ready for surgery. i have TRICARE. yeah I'm still going through the reimbursement process so i hope they cover it! the partial is $4500 and the full is $6000 at least mine would be

[annekat]

Well, that is less than some surgeries, but for me, if Medicare covered it, I'd pay 20℅, though I do now have a Medicare Advantage Plan with a yearly out of pocket limit. You may just have better insurance, and if they told you it would be covered, that may be right... best to make sure, though. I certainly agree that it should be covered, as should any other damage caused by a disease!

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[LaurenGoodwin]

I completely agree!