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mama2005
05-30-2011, 02:41 PM
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
05-31-2011, 01:48 AM
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
05-31-2011, 12:41 PM
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
05-31-2011, 04:15 PM
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
05-31-2011, 06:17 PM
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.:unsure:

Good luck with whatever you choose Mama.

mama2005
06-01-2011, 04:51 AM
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
06-01-2011, 09:59 PM
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
06-01-2011, 10:39 PM
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
10-19-2011, 09:09 AM
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
10-19-2011, 09:13 AM
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.

freakyschizogirl
10-19-2011, 09:29 AM
Thats wonderful news Shannon. Glad you were finally able to get the correct surgery and the sternum cartiledge was used.

I wont be allowed to even contemplate surgery til next August now (i already have the appointment booked) I have to be at least 6 months in remission before my Wegs docs will let me.

elephant
10-19-2011, 12:07 PM
Shannon your nose looks great! Glad you can breath again!

mama2005
10-19-2011, 12:15 PM
thank you for your post shannon. I am scheduled for a consultaion in November for the reconstruction. I can't live like this I am only 25 and hate that my baby (shes 6 and my son s 3) is uncomfortable with me taking her to school because I look diffrent. I want to be my old self. How long were you hospitalized and not allowed to work?

Palmyra
10-19-2011, 12:52 PM
And I must add Ms Shannon, you do look great. Having an intact nose is not as simple as vanity. It affects our mental well being.

I am very happy you had a good result with your reconstructive surgery. I am the resident dental advisor on site, so I have an affinity for a conservative amount of esthetics. How we look does affect how we feel. We can marginalize that to a degree when our lives are on the line, but it should not put us in a prison of resignation to being less than what can be reasonably obtained. We certainly don't need to be guided by super models, but a small amount of vanity can encourage healthy choices, and ward off depression. Floss and brush well! Jane

Sangye
10-19-2011, 01:32 PM
Hi Shannon, welcome to the group. Like the others I'm glad your nose was repaired well and it's holding up. I hope you'll continue to post.

Shannon
10-19-2011, 01:53 PM
I'm so glad to hear that you are going for the consult. Coincidentally, my consult was also in November! For such a complicated surgery, I was home the same day. The most discomfort came from the sternum where they took the cartilage. I used a combo of Vicodin and Advil for a couple of days but surprisingly it was a pretty quick recovery, I was up and around in a few days (but sore) and then there is the white bandage on your nose for about a week. I think my favorite part was my kids reaction. They couldn't remember a time when I didn't have a divot in the center of my nose. Please feel free to ask any questions you think of! I'd love to hear about your progress!

Brooke
10-20-2011, 04:46 AM
Hi Shannon, welcome to the group! I also had a saddle nose deformity. My ENT also took cartiage from behind my ear.. so far it has done well. It has been about 2 years since that surgery.

KimH
10-24-2011, 10:24 PM
Hi, Are there are telltale signs that a saddle nose deformity is occuring? On thursday the bridge of my nose felt just a tiny but bruised and mildly pink. Firday is was just a tiny bit puffy; just enough for my husband to notice and he never notices anything. I called my dr and he said that since it was only 24hrs that this nose thing started that I should keep an eye on it and to call him over the wk end if it becomes worse. Everyday it did become just a tiny bit more tender and pink. It is not all that painful. It feels like I was hit in the bridge of my nose. I am due to have my 4 wk repeat blood and urine today. Rhuemy said he'd order antibiotics if needed and perhaps a head sinus CT since it did not have one of those tests for this flare. My previous records have been sent to a Weggie spec and once it is all together my rhuemy will consult the the weggie doc. But for now????? Any ideas on what is wrong with the bridge of my nose?

My wegs is in my sinuses, left ear opens and closed, mild nasal crusties but nose is always open and not drippy. Nasal discharge is clear and only occassionaly has a speck of blood. My clinical symtpoms have been resolving since I have been on Cellcept. I should start to go down on pred but will wait for answers to this nose thing.

freakyschizogirl
10-24-2011, 11:16 PM
Hi Kim, keep an eye in it and if ya become more concerned ask your Rheumy to be referred to a Ear nose and Throat specialist. My perforation and collapse took between 6 and 8 months so do keep an eye on your nose (just dont walk around like that or you will walk into things!)

Let us know how you get on!

delorisdoe
10-24-2011, 11:39 PM
thank you for your post shannon. I am scheduled for a consultaion in November for the reconstruction. I can't live like this I am only 25 and hate that my baby (shes 6 and my son s 3) is uncomfortable with me taking her to school because I look diffrent. I want to be my old self. How long were you hospitalized and not allowed to work?

My brother used to work for my favorite grocery store and I would purposely choose the line he was not working in so he would not have to say hi to me infront of co workers. This was while I was on 100mg of pred and ctoxan. Doctors could save me but they could not make me feel better.:confused1:

KimH
10-25-2011, 01:21 AM
Thanks. I asked my rhuemy if I should see my ENT. I might just call him anyway. During my past 2 sinus surgeries I had asked him to a bit of a nose job as long as he was in there. Didnt want it to have to happen this way though.

Heck I walk into thing reguardless. I could tell people my husband elbowed me during ther night!

Sangye
10-25-2011, 01:48 AM
I agree that you should keep an eye on it.

I don't have nasal or sinus involvement but my nose has gone through periods where it got very red, warm and the cartilage area became very tender. The cartilage has been softer ever since and if I hit the end it's extremely painful. My Wegs docs (including ENT) say it isn't Wegs but I know it is/was. It happened while the Wegs was "smoldering" and we didn't know it. It's not progressing and it doesn't cause any problems, so I just keep an eye on it.

Rose
10-25-2011, 05:09 AM
Before diagnosis around the time of my first symptom of rhinitis, I also had a swollen nose which was very hot and painful to the touch. The doctor was sure this weird symptom was caused by sinusitis which was my diagnosis then. Of course, 6 months down the line I was diagnosed with WG. That was 3.5 years ago and the hot and swollen nose has never returned. I know now it was definitely WG but it never did develop into saddle nose.

mama2005
10-25-2011, 09:05 AM
my nose started off a little swollen and very tender but I also have a hole in my septum which also helped with the collapsing of my nose because there wasn't enough support. I would definatly keep an eye on it and continue to talk to your doctors.

Sangye
10-25-2011, 01:40 PM
Something that Jack and I used to discuss... With Wegs many symptoms seem to come and go on their own. Even when Wegs is in remission it can throw out some odd little symptoms at times. I've had a lot of things pop up and disappear on their own.

KimH
10-25-2011, 09:46 PM
I had sinus/head CT yesterday afternoon. The good thing about very small hospitals is that sometimes there are not many ppl there. The dr faxed in the orders at 1230 and I walked in at 230 to schedule my CT and the machine was free. Results should be in today. I will call my dr today to keep an eye out for results as I am sure he will not be expecting them. Nose hurts like toothache and it is not fun wearing glasses. So I guess I will really be walking into things. Thanks everyone.

Shannon
10-26-2011, 07:52 AM
My saddlenose happened so gradually that I don't remember a specific incident. I just started noticing more and more that my nose looked different. I hadn't been diagnosed with WG but was constantly sick with sinusitis so I thought it was a side-effect of one too many infections. It wasn't until a doctor told me I had a saddlenose that I realized just how much differently my nose looked. I have gone back through pictures over the years and always look at my nose to see if I can determine when it started but all I can tell is that it was over a 1-2 year period. The ear cartiladge worked well for someone else but not for me so, for me, there must not have been much left to work with which is why they used rib/sternum cartiladge. I wonder how common it is because when I would go see my specialist he would ask permission to bring in some of their fellows that were still doing their residency to see what it looked like. I always said yes with a smile, but it was very embarrassing to have people looking my nose saying, 'oh wow!'.

I still worry that one day I'll wake up and it will have fallen again and it's been over two years. :)

delorisdoe
10-26-2011, 07:58 AM
Something that Jack and I used to discuss... With Wegs many symptoms seem to come and go on their own. Even when Wegs is in remission it can throw out some odd little symptoms at times. I've had a lot of things pop up and disappear on their own.

I am the poster child for this.

mama2005
10-26-2011, 11:24 PM
is the ear cartialdage surgery less painful and a quicker recovery then the rib/ sternum surgery?

Brooke
10-27-2011, 08:49 AM
I think so mama

Shannon
10-27-2011, 12:10 PM
Hi Mama,
With the ear cartilage I had stitches behind my ear and a large bandage around my ear as well as on nose. It was difficult sleeping on my side as well. With the rib/sternum cartiladge I had the stitches but they were under my breast. It was painful when sitting up and moving those muscles that were involved in the surgery but I recall that both recoveries were about 10 days. If you're going to it, in either scenario I would recommend what my doc did and have them harvest enough to sew under your scalp in case they need to revise later. This was not an ENT I went to. His practice was limited to facial reconstruction. He warned me it would be about a full year before everything felt completely normal again and he was correct on that. It wasn't a painful year at all but there are a lot of suture sites that need to heal completely on the inside. It still ranks as one of the top 5 happiest days of my life when they took that bandage off and I saw a nice straight nose. :D

drz
10-27-2011, 01:38 PM
Just curious as to how long it can take saddle nose to develop. I have some slow on going erosion going on in nasal bridge but no hole yet in septum which my ENT told me is usually first step and very common in GPA. I know not every one gets the saddle nose and wonder how common it is and if there is any way to prevent it apart from trying to control WEGS by quickly treating flares and doing sinsus rinses twice a day as recommended.

mama2005
10-27-2011, 03:18 PM
Thank you Sharron for all the great info. I am hoping for surgery by March. I am having a flare so with meds hopefully I can get it in remission and start my 4months and then have the surgery. I am sure it will be a great day when I can look at myself agian and feel like its me. thank you sooo much for telling your story here.

mama2005
10-27-2011, 03:22 PM
drz my nose took about 6moths to a year to start showing but I had and have a hole in my septum. I dont kow that there is anything you can do to prevent it.

JanW
10-27-2011, 11:52 PM
I have no hole in my septum but I think it took more than six months to collapse completely. Nothing can be done to prevent it as far as anyone knows, and, I think that as any saddle nose suffer knows, its likely to collapse again under a bad enough flare (although my doc has said that not usually as badly as it did in the first go round.

I need to have a consultant with my ENT and his plastic surgeon and then probably have the surgery in December if my health stays stable. I have also heard from my doc that it takes about a year for everything to completely heal, and that many people end up with a permanently numb nose.

Brooke
10-29-2011, 12:46 AM
Mine happend right away after a sinus surgery. I don't have hole in my septum... as far as I know..