Saddle-nose

[Debbie C]

For those of you that have it, I was wondering what were your symtoms before it happened,was it all off a sudden,like you just woke up 1 day and your nose collasped ?! I am having issues at first I thought it was a sinus infection but now I don't know but my nose seems to have a small pain across the bridge of it and it seems stuffed up but it's not. I hate to go running to the ent so I was just wondering how it came about. Thanks !!!

[pberggren1]

For me it just happened with the flare in 2011. I didn't even notice it. My doc noticed it first.....lol

[NikkiNicole]

My nose has changed a little bit since all this started in Feb 2012. I've always had a smaller nostril on the right (my right) because my nose is crooked. But, it's much much smaller now, as if the support on that side has collapsed a little. When I breathe in, it closes now ... which is has NEVER done. I took a picture of a side profile of my nose ... and if I ever notice any other changes, I'll take another and compare.

[annekat]

I noticed mine all of a sudden and don't know how long it had been there. I felt no particular pains beforehand. I had seen my doc and been in the hospital overnight right before I noticed it. None of them mentioned it. My glasses make it less obvious. I already knew what it was and what it meant, even though I didn't yet have a diagnosis, because I had done research on sinus issues and ear problems and seen mention of Wegeners on the web, and then I started reading the forum when a doc suggested Wegs as a possibility. So, I was not nearly as shocked to see the saddle nose as I would have been without the internet! I hope you don't have it, Deb. I get occasional small pains on the upper part of my nose, but it hasn't gotten any worse.The very worst view of my nose is from the side with my glasses off. It looks like some kind of a beak, pointing at a weird angle. With my glasses on, it just looks like I have a bit of a turned up nose.

[Woodsyartist]

Thank Deb for posing this question. I was wondering about it myself as I have sinus issues.

[carriej22]

My nose has changed too; I used to have a pointy nose and now it's more of a round nose. However; it's not to the point where I would call it a saddle nose - but it has changed. My nostrils also close now too; as you say yours does Nicole.

My glasses also fall down my nose a lot where they never did previously.

#nosedrama

[Debbie C]

That's a scary thought that it just happens without any problems prior.Maybe I should put my ent on my list of things to do !!!

[carriej22]

I go see my ENT regularly. Every 3-4 months. Might start going every 6 months now; but he really loves to look up my nose (I know, what a weirdo) and he also loves to look at my vocal chords and go on and on about the inside of my ears. He is purely fascinated (he is young, from africa, and this disease is not common over there so I think I'm his first wegs patient).

It's nice because he keeps a close eye on things and can tell me if I'm doing a good job with my irrigation or if it looks good or is inflamed, etc...

[annekat]

That's a scary thought that it just happens without any problems prior.Maybe I should put my ent on my list of things to do !!! Deb, I think it is a lot less likely to happen if you've been treated for awhile and your sinus issues are pretty much under control. In other words, if the process was starting, it may have been nipped in the bud once the inflammation and disease activity was lessened, and the blood started flowing through the area more normally. As I understand it, it is the result of tissue death, or necrosis, resulting from the granulomas and damage to the cell walls, restricting the flow of blood and the oxygen it carries to the tissues. Someone correct me if I don't have it quite right.

[SpaceflightAddict]

I did not notice my saddle nose until the doc pointed it out to me the 2nd day I was hospitalized..... he had assumed that I knew or had noticed on my own. I don't really pay attention when looking in a mirror, so I had no idea, and you could not really tell until you looked at it from the side.

So really I had no idea that it had happened, or when. Kinda scary thinking back about it.

[annekat]

Interesting how some of us did not even notice when it happened. I guess I don't look in the mirror nearly as much as when I was younger. I barely have any mirrors in my house. If I didn't wear glasses, I probably would have noticed it. I first noticed it by feeling the bridge of my nose with my finger, not by seeing it.

[D.B.]

i had issues w nose becoming larger on one side (hard not to notice). then it began to collapse (on side more than other). now other side collapsing too and bottom of nose turning to left. its such a mess however its not painful. there us nothing left inside nose.

[Alysia]

Hi,
saddle nose... a painful issue :sad:
saddle nose is not happening just like that. it is the result, at least in my case, of months and years of endless inflamations in the nose: boogers biggers then those on Andy's thread and a lot of bleeding and pains.
at first there was slight change, near the glasses line, 4 years ago. I though it was because of new "heavy" glasses (glasses must be as light as possible not to burden the poor nose).
then in the past year when my wg became more "aggresive", my nose started to collapse in a way that was obvious. it took couple of months of "falling" and was scary :scared: feeling helpless and depressed :crying:
RTX stopped the inflamation, but the collapse continue a bit after. I think it stop collapsing now.
I found an ENT who knows wg and he said that one day I can do a surgery to my nose. not yet, untill there will be no more inflmation. new nose can also collapse if there is still wg activity inside.
sometimes I hate my new nose :crying: sometimes I can like it :unsure:

[NikkiNicole]

Oh noses, they are such temperamental creatures, aren't they? I hate mine. I've hated it forever but lately, our relationship has become less love, more hate. One day I'm horribly congested, the next? I can breathe. When I breathe in, one side closes up, randomly I get the weirdest sharpest pain like someone just rammed a rod inside it and yanked it out. Just one random pain. Then, it hurts all the time. Some days, it's like a hollow cavern ... others it's like a cavern with many stalagtites/stalagmites. It feels like there's an ant walking around in there. I'll pull out something clear and then ... randomly, I'll itch my nose and discover it's full of bloody chunks and there's blood spilling down my face.
Often I wish there was bi-polar medication available for my nose.
I obsessively look at it. It is slightly different ... and I dread the day it becomes visibly different to other people.

[annekat]

Wow, Nikki, your nose really goes through some gyrations! But if I remember right, your diagnosis wasn't as delayed as some of ours... my saddle nose developed after 2 years or more of undiagnosed Wegs activity. So I'm hoping that yours will behave itself now that you are getting proper treatment and the progress of the disease is being slowed way down. I pray that it does not change enough for people to notice.

[Alysia]

But if I remember right, your diagnosis wasn't as delayed as some of ours... my saddle nose developed after 2 years or more of undiagnosed Wegs activity.

and mine was develped after years of being dx but without enough "strong" treatment.

[D.B.]

hi nikki i totally identify w your post. such a descriptive portayal of what i deal with. its crazy how my nose changes hour by hour. rare times irs not bothering me i just worry what is going to happen next.

[Marius]

My nose is acting up the same way! Oh no, does this mean the meds are not working properly and a collapse is eminent?

[pberggren1]

My nose is sore just inside the right nostril today so I made an appointment with my ENT for Jan 8th. That is the earliest I can get in unless I want to travel 3 hours one way.

[annekat]

My nose is acting up the same way! Oh no, does this mean the meds are not working properly and a collapse is eminent? Keep in mind that my saddle nose developed without any particular aches or pains or noticeable changes in advance. Just lots of mucus from what I thought were recurring sinus infections. So the pains could be from something else related to the whole process, like severe crusting, polyps, ulcers, obstruction from inflammation, and not directly from the septum having a hole in it or the cartilage becoming detached. Mine developed when I wasn't being treated for Wegs yet. If you are, then I'd suspect you have a better chance of avoiding it. I really can't speak for anyone else, though, because everyone's case is different, and if you are seeing outward changes visible in your nose, then I suppose there is a chance. If it happens, it isn't the end of the world, but I hope it doesn't for you, Nikki, and others who don't have it yet. Definitely, not everyone with sinus involvement gets saddle nose.

[Debbie C]

Well I saw my ent today and he said my nose looks good :rolleyes1: but when I was at Cleveland Clinic back in Sept. ,I told my rhuemy that my ear was bothering me ,like I had scatched it or got bit my something,it is just on the upper inside lobe. He looked and said "Yea you do have something going on there ":confused1: So I asked my ent today and he said I had like a infection ( it was one of those long "p" words ) so I have to use an antibiotic cream on it for two weeks and go back. It would have been nice if the other dr. would have done something 3 months ago !!!
Then the other day I had a ct scan which was supposed to be of where my esphogus ends and I have a hiatial hernia that they were going to scan . I was also supposed to get my lungs scanned but the girl at the drs. office forgot and didn't get that approved by my ins. in time .So the lady that did the scan scanned of my up to my heart ( more than what she was supposed too, she felt bad since I had to come back and drink that contrast again.) Well I got the report from my dr. and it was just of my abdomin and pelvis. What the hell...I didn't need the report on that !!!! So I'm hoping if I get the cd one of my drs. will be able to read it and see what's going on with me.
I'm still ranting so if you want to stop reading you can !!! But I got my bloodwork back and my numbers are going up a little but not out of range except my chlorestoral and triclycerites and ldl are really high. My trics. are 217 and they want you below 149 and my health nut boyfriend got his back today and his was 47. WHAT ,you the hell has 47.And all his other numbers are way below mine or any other normal person . I give up..I try to watch what I eat but there's no use. My mother who eats nothing but junk and candy is better than mine. Maybe it's the wg !!!! Does anyone else have really high numbers or do you do the right thing and take crestor or libitor ???
O.K. I'm done for now...I can't wait to pig out for the holidays !!!!

[annekat]

Nice rant, Deb! Sorry about all the BS you went through and the high triglycerides! I need to get all that stuff checked, too. I don't have a clue if the Wegs could affect it, unless the pred makes us eat too much of certain things. But you say you are careful... and how dare the BF have such low numbers!

[mishb]

Nikki, our noses must be related :razz:

You described exactly how my nose is from day to day.

[Alysia]

Hi Debra, I am glad that your nose looks good. I hope that all the rest will be ok soon.

[D.B.]

hi debra yay for your good nose :) sheesh quite the ordeal w your scans. i lkke to tell my BF everything not a competition btw us. he has to be better than me w everything lol but i have him beat on volume of lab data/numbers.

[annekat]

Nikki, our noses must be related :razz:

You described exactly how my nose is from day to day. Michelle, if I remember right, you do have the saddle, and it isn't getting any worse, yet you do have the constant changes, pains, and contortions like Nikki does. Which makes me wonder if those changes are directly related to the saddling of the nose at all. I just have the saddle without any significant pains or other daily changes. I'm not sure if it has gotten any worse over time, but if so, only very slightly.

[Debbie C]

Reading this it does seem to be pretty much a trend that if you have sinus issues that you eventually end up with saddle nose. I "think" my ent said it's from the pred use.

[Alysia]

Anne, for me it was VERY painful. I mean the change to the saddle figure.
I wonder if it can be changed significantly without pain ? maybe your change is minor, Anne, like the change I had few years ago.
maybe we should open a thread of saddle noses pics.... like the boogers one...
depressing issue :crying:

[pberggren1]

I had no pain, none that I can remember.

[D.B.]

Anne, for me it was VERY painful. I mean the change to the saddle figure.
I wonder if it can be changed significantly without pain ? maybe your change is minor, Anne, like the change I had few years ago.
maybe we should open a thread of saddle noses pics.... like the boogers one...
depressing issue :crying:
lots of pain for me too. i couldnt bear to post my pic. sigh...left profile is hideous, straight on view scary, but i work my right profile if i am forced into photo. i can almost look ok in selfies now due to practice lol people always di double take looking at me. i just smile. kids look longest and adults look embarassed.

[annekat]

Anne, for me it was VERY painful. I mean the change to the saddle figure.
I wonder if it can be changed significantly without pain ? maybe your change is minor, Anne, like the change I had few years ago.
maybe we should open a thread of saddle noses pics.... like the boogers one...
depressing issue :crying: My saddle nose is similar in appearance to yours and to Phil's from pics I've seen of both of you. Yet Phil and I had no pain. Which is why I wonder if the pain was only from the saddle nose. Everything is related, though, for sure.

[Alysia]

My saddle nose is similar in appearance to yours and to Phil's from pics I've seen of both of you. Yet Phil and I had no pain. Which is why I wonder if the pain was only from the saddle nose. Everything is related, though, for sure.

maybe I am more "spoiled" and feeling pain when others have more tolerance... :blushing:

[annekat]

Reading this it does seem to be pretty much a trend that if you have sinus issues that you eventually end up with saddle nose. I "think" my ent said it's from the pred use. My saddle nose developed BEFORE I was ever treated for Wegs, so I don't think it could have been from the pred. Although I did have some brief pred treatments pre Wegs dx. Also, it would be interesting to do a poll on how many people with sinus involvement got saddle nose eventually and how many haven't. I don't believe that everyone with such involvement will eventually get it. I think the saddle nose occurs because of extreme disease activity eating away at the septum, and that those who are getting continual, proper treatment and have brought the level of disease activity under control, may easily avoid getting a saddle nose. Of course, a later flare could then cause it to happen if not caught in time or if it doesn't respond to treatment.

[annekat]

maybe I am more "spoiled" and feeling pain when others have more tolerance... :blushing: Oh, I don't know. My dentist did tell me I have a high tolerance for pain. But I've read others on here who didn't even know they had a saddle nose until someone pointed it out, and I don't remember them mentioning a lot of pain beforehand. Everyone is different, and if you think that all the pain you had was in conjunction with your saddle nose developing, then it probably was. But it may not be the same for everyone.

[mishb]

Michelle, if I remember right, you do have the saddle, and it isn't getting any worse, yet you do have the constant changes, pains, and contortions like Nikki does. Which makes me wonder if those changes are directly related to the saddling of the nose at all. I just have the saddle without any significant pains or other daily changes. I'm not sure if it has gotten any worse over time, but if so, only very slightly.


Anne, I don't have saddle nose.

It's all of the insides that have collapsed to the point that there is basically no airway for me to breathe through one nostril, and the other nostril - very minimal due to crusting etc.........I am therefore, a mouth breather. :sad:
There are changes to the shape and size of my nose from the outside but it has not saddled. The bone is very strong (according to ENT) and will not collapse.

They say that they cannot (or will not) do any internal nose repairs until I am med free.

[annekat]

Anne, I don't have saddle nose.

It's all of the insides that have collapsed to the point that there is basically no airway for me to breathe through one nostril, and the other nostril - very minimal due to crusting etc.........I am therefore, a mouth breather. :sad:
There are changes to the shape and size of my nose from the outside but it has not saddled. The bone is very strong (according to ENT) and will not collapse.

They say that they cannot (or will not) do any internal nose repairs until I am med free.Michelle, I'm glad you don't have the saddle, but am unhappy about all your internal nose problems and breathing issues. Although I have the saddle, I have no trouble breathing. So I feel very lucky in that respect. I hope you can become med free so the repair work can be done. I'd certainly think anyone's insurance would cover such a situation, though I know that might be less of an issue there than here.