Infomation regarding saddle nose formation

[lans]

Hi,

I'm new to this forum. I'm not currently diagnosed with Wegeners, although I'm trying to piece together my symptoms that doctors have provided little assistance.I have been experiencing mainly ENT related symptoms, no respiratory or kidney.

I have been on this painful journey for nearly 10 years, and have had doctors laugh, tell me I seem paranoid, or seem nervous etc.

I started to think maybe I was crazy, because every test would come back clear. Not specifically interested in wegners, just CT's (multiple) different bloods, specialist etc.

Pretty much for 10 years I have had chronic nasal pain.
Most of the time its localised at the bridge of my nose.
Overtime, the pain has gotten allot worse and migrated to my jaw, and temples.
It is never in the same place, and the severity is always different, along with the type of pain.
Sometimes throbbing, others waves, then tingles and heat.
I feel uncomfortable every day, and there isn't a moment in the day I can escape the way I feel
More recently, its has started in my chin and upper lip.
As this pain migrated I have started to get a butterfly looking redness over the nose and check, and sometimes the upper lip.
I have also started to develop facial sweating where the butterfly rash/redness is with little exertion.
I have never been a sweaty person, never really needed to wear antiperspirant or anything.
At times my face has the appearance of lost volume, then others its more plump and normal looking (my weight is constant).
The most alarming development has been a change in the appearance of my nose.
For years I had pain, and it remained constant.
No pain relief helps the pain (Panadol, ibprophen, Mobic, panadiene forte, endone.) provide any relief.
The only thing that provides temporialy relief is alchohol, although its never worth it as the pain is ten fold worse the next few days.
Sometimes applying pressure, like pinching the bridge of my nose can help, or having a warm shower. This is only momentarily.
My nose has fundamentally changed shape, its smaller if that makes sense.
Profile photos show this. At first I thought I was just fixated with it due to dealing with pain for so long. Now I know I'm right.
The bridge is more concave, and my nose has much more of a curve, and the end is tippled up when it used to point more down.
I have always had a small nose, but this is something totally different.
At times my nasal flares feel more solid, and other times they are so soft that when I breathe in they kind of shut a little.
I get severe sore red ears at times to, that seems to go away spontaneously.
I also get blocked ears, and regular ear aches.

Nothing makes sense to me anymore. I'm so over my pain controlling my life. I feel like I stopped living the day the pain started.
That's a 1/3 of my life, I'm so beyond over it. If anyone has experienced anything similar, or could provide some insight into my symptoms I would appreciate it. I'm so tired of dealing with this, I just want to not think about my pain for a couple of minutes, and not stress that something nasties is going on inside. :(

[Dirty Don]

Welcome Ians...you've come to the right place to get info. WG has many presentations so I wouldn't discount it at this point. You definitely need to get better/more cooperative docs. 10 years is way too long for docs NOT to get a dx of some sort...omg. I have rhinitis along with the WG attacking my sinuses. Tho I don't have a collapsed nose, when the WG was at its height my rhinitis was painful much of the time. As the drugs for WG worked, my nose returned to a more normal 'just sneezing' state. I hope/know someone on here will have more info/insight for you. Keep asking questions, don't always take the docs' words as law, and the best to you.

[Alysia]

welcome. I am sorry for your pains. sounds too long to suffer without relief. Do you have nose bleeding ? Crusting ? Gum bleeding ?
Can you post a pic of your nose ?
I think that if you do have a saddle nose its an indication to wg.

[annekat]

Welcome to the forum. I do think it sounds like a saddle nose and that you have had WG in a slower progressing state than most for 10 years. But I am not a doctor, and you need to see one who will take you more seriously. I don't know where you are located, but check these two links, one for recognized specialists, and the other for docs recommended by patients, which can also include known specialists.
Vasculitis Foundation » VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)
http://www.vasculitispan.org/

As for your nose looking smaller, I have saddle nose, and it does look smaller from some angles, for sure. I'm sorry about your pain. That is something I've never had much of, for some reason, but I know many with WG do. I hope you can get some relief, and keep us posted.

[lans]

Thanks you very much for your response :rolleyes1:
I have to admit that I have developed somewhat of an anxiety with regards to doctors as a result of years of bad dealings.
I know I'm partly to blame for my pain, as I anticipate them looking at me, and pigeon holing me as a loony.
Was your pain constant? What was it like?

[lans]

Hi Alysia,

It is way too long. I on the end of my tether.
No nose bleeding or crusting although its chronically dry.
I will post a photo tomorrow. :) or two for comparision.
I do have strawberry gingivitis (self diagnose) although no gum bleeding.
I don't know if its saddle nose, Although it definitely small (or appears) And there has been sine breakdiwow of the bridge.

[Birdie]

I do have strawberry gingivitis (self diagnose) although no gum bleeding.

Welcome lans,

Reading what you wrote makes me wonder if it's Wegeners. Some of the issues are classic. Here's my advice based on where my experience crosses to yours, specifically your gum issues.

I was diagnosed by a gum biopsy. It proved Wegeners. My gum issue was certainly much worse than yours, they were talking about pulling all my teeth and amputating half my jaw, but my situation shows that Wegeners certainly could be the cause of your gum issue. Granuloma can happen anywhere there is cellular division (mitosis) and it's most likely to be spotted in places with the highest rate of cellular division, like gums, because statistically those are the places where you're most likely to have enough granuloma to biopsy.

Gums are an easy biopsy. There is a lab in California which specializes and I can give you the info on it.

You could have any one a million issues, many of them need diagnosis and treatment to prevent serious problems. So my second bit of advice is, don't stop trying to figure it out even if you get a medical diagnosis, you should always doubt it and double check. Many Weggies were originally incorrectly diagnosed and treated, some for many years, while the condition slowly caused damage all over their body.

Hope you don't have Wegeners,
Gary

[annekat]

Hi Alysia,

It is way too long. I on the end of my tether.
No nose bleeding or crusting although its chronically dry.
I will post a photo tomorrow. :) or two for comparision.
I do have strawberry gingivitis (self diagnose) although no gum bleeding.
I don't know if its saddle nose, Although it definitely small (or appears) And there has been sine breakdiwow of the bridge. There could be some other medical reasons other than WG for saddle nose. Two are heavy cocaine use and syphilis, but I'm not AT ALL suggesting either of those apply to you. There could be others, only the really well known ones get mentioned. I, too, hope you don't have WG. Gary's idea of a biopsy is a good one, if they can collect a sample that yield a conclusive dx. Unfortunately, lack of a biopsy result doesn't rule out the disease. But it's worth a try and is the best way to get dx'ed. Finding more cooperative docs is your first step.

[lans]

Hi dirty don,
Thank you for your reply....I Feel so good just being on this forum and having people validate my pain and experiences.
Can you describe what it was like having WG attack your sinuses if you wish?

I don't think my nose is collapsed, although it has definitely changed in appearance. Seems smaller, more narrow, and the bridge is more concave.

I have been in pain for so long, I don't even remember what it is like to be "normal" / pain free.

Sigh...pitty party over here lol.

[annekat]

It can take awhile for the nose to completely collapse, and not everyone's does. With treatment, you could possibly stop the progress of it, if WG is the cause. Best of luck in getting it dealt with.

[drz]

I would look for an ENT doctor that is a Weg endorsed specialist too. You may have some autoimmune disorder that is causing your problems and need to get it correctly diagnosed and treated.

[Middlesista]

GPA Nov 2015: I saw an Oto-larynologist at MGH yesterday and asked about saddle nose. She mentioned they see a lot of folks with GPA due to some of the associated involvements including saddle nose. I was asking since this is also a concern of mine since it does seem to be a common complication.

The doc at MGH did a thorough exam and told me all was well and that usually folks that develop saddle nose have disease in their sinuses and/or nose with crusting and bleeding. I thought I had read some posts awhile back where folks mentioned that they did not have bloody noses or crusting prior to developing a saddle nose?

[Alysia]

GPA Nov 2015: I saw an Oto-larynologist at MGH yesterday and asked about saddle nose. She mentioned they see a lot of folks with GPA due to some of the associated involvements including saddle nose. I was asking since this is also a concern of mine since it does seem to be a common complication.

The doc at MGH did a thorough exam and told me all was well and that usually folks that develop saddle nose have disease in their sinuses and/or nose with crusting and bleeding. I thought I had read some posts awhile back where folks mentioned that they did not have bloody noses or crusting prior to developing a saddle nose?

I dont think so. My saddle nose was created after about 4 years of crazy bleeding and crusting. No saddle nose without severe long inflamation that "eat" the bridge of the nose. So, dont worry.

[annekat]

I can't imagine the septum getting eaten away without noticing some symptoms during that process. I had two and half years of recurring "sinus infections" before finally being dx'ed, and I'm sure there was at least some blood and crusting, though I remember that as escalating closer to the time of dx. I don't know when my saddle nose started and it seemed to happen all at once right before my actual dx. I'd been in the hospital to have my lungs looked at and no one mentioned it, so I don't know if it was there; I noticed it soon after returning home, which pretty much told me I had WG, though no biopsy had been performed yet. Do you have sinus symptoms and discharge without any blood or crusting? Just curious.

[debra]

Ian, dont know if you will see this, but some of youre symptoms sound like lupus, and some wegeners... Just because you have one, doesnt mean you cant have another, as im sure you know! Autoimmune issues can go on to attract more, like a collection of friends! Who needs enemys with these right? The butterfly rash, sounds like aclassic lupus symptom... Lupus can also saddle the nose, and alot is similar between wegeners and lupus. Again, could be both, over lapping... Just a thought... Middlesista, i beleive the nose can be effected at any time with wegeners. Doesnt nessicarely have to involve pain and bleeding in my opinion only. I say this because although i had some pain, not many bloody noses, coarse before this, i never even had one. My nose changed shape a little, but hasnt saddled, YET! My mouth on the other hand, happened with absolutely NO pain! Took out the bottom teeth with gum and bone, in about eight months time, o pain! Thank God, my top are all there! For now! Also thankful for a small mouth, though some may argue that! Haha...so its not real noticable, but a huge blow for sure.. Things can change pretty fast, even when treated, please dont hate me for saying this! Just saying so you can stay alert... Some have no eye issues, then later go on to develop them sometimes years later, with treatment, so just stay vigilant... Good luck... Debra... Sorry in advance for any typos!

[Middlesista]

I dont think so. My saddle nose was created after about 4 years of crazy bleeding and crusting. No saddle nose without severe long inflamation that "eat" the bridge of the nose. So, dont worry.

Thanks Alysia although I am sorry to hear about your experiences with your nose so many things can happen with GPA

[Middlesista]

I can't imagine the septum getting eaten away without noticing some symptoms during that process. I had two and half years of recurring "sinus infections" before finally being dx'ed, and I'm sure there was at least some blood and crusting, though I remember that as escalating closer to the time of dx. I don't know when my saddle nose started and it seemed to happen all at once right before my actual dx. I'd been in the hospital to have my lungs looked at and no one mentioned it, so I don't know if it was there; I noticed it soon after returning home, which pretty much told me I had WG, though no biopsy had been performed yet. Do you have sinus symptoms and discharge without any blood or crusting? Just curious.

Hi Anne - I do have occ sinus type discomfort in my forehead and discomfort in my nose at times and occ "runny nose" that is clear drainage. No blood or crusting thus far. I did speak to my RA also so was happy to have a thorough "look see" by the doc at MGH

[Middlesista]

Deb - you are so on target with things changing quickly with GPA and staying vigilant. I have already lost my vision twice and was fortuante that it came back after treatment but I am very in tune with that. Lost my hearing in my left ear and that has not come back except for being able to hear loud noises which is better than hearing nothin at all with that ear

hope you are following up with tour treatment plan Deb and things are heading in the right direction for you. Remember - you are the captain of your "ship". ☺️

[annekat]

Hi Anne - I do have occ sinus type discomfort in my forehead and discomfort in my nose at times and occ "runny nose" that is clear drainage. No blood or crusting thus far. I did speak to my RA also so was happy to have a thorough "look see" by the doc at MGH Many of us with sinus involvement don't get saddle nose, and it doesn't sound very likely in your case.... I don't remember if you were diagnosed and treated quickly after first presentations of symptoms, but if you were, that is a good sign, and the disease will have slowed down enough to make saddle nose unlikely, I'm guessing. What could happen in the future, of course, is unknown.

[debra]

Thanks, my sista! Working on it, but slow is the way... Patience, oh boy have i learned this! But i needed to, as its a weak area for me. Not anymore! My sista in the middle, dont lose hope on youre hearing, cause this also can change pretty quick. Mine, in the left took a few weeks, were as before it returned much faster. So you just never know... And of coarse this is so far without my needed treatment, so you should do better! Very encouraging for you... Good luck... Debra...

[Alysia]

No saddle nose in Lupus, Deb. Only in wg. And not without severe long time bleeding and crusting.
When my sweetie was alive we started a thread here trying to count how many of us have saddle nose. It was about half.
I am happy with my saddle nose because my beautiful soul mate also had one, so its nice to look the same.
Phil told me that when someone asked him what happened to your nose, he said: I had a fight.. you should have seeing the other guy..

[annekat]

According to Wikipedia: Saddle nose is a condition associated with nasal trauma, congenital syphilis (https://en.wikipedia.org/wiki/Congenital_syphilis), relapsing polychondritis (https://en.wikipedia.org/wiki/Polychondritis), granulomatosis with polyangiitis (https://en.wikipedia.org/wiki/Granulomatosis_with_polyangiitis), cocaine (https://en.wikipedia.org/wiki/Cocaine) abuse, and leprosy (https://en.wikipedia.org/wiki/Leprosy), among other conditions.

So there are other medical conditions that can cause it, but lupus was not mentioned and I haven't heard of it with lupus.

I just looked, relapsing polychondritis doesn't seem to be a vasculitis, but does seem to be an autoimmune condition that attacks cartilage and is treated with immunosuppressant drugs. It more typically attacks the cartilage in the ears but can attack it anywhere, including the nose.

[debra]

Actually i beleive its lupus pernio, i cant post a link here. Also on medscape theres cases with lupus eryth as well. Also cancers of different sorts, but more in the granuloma family would be Sarcoids, which effects alot of the same areas as wegeners... Sarcoids also presenting in the lungs, almost exact to wegeners. Syphillis can also cause this, as well as leprosy... Surprising to say, there are quite a few that can do this, even aids in some cases... I guess it makes sense though, in tissue death. As i mentioned previousely, my mouth looksas though its painful, or was painful, and surprising enough, i felt absolutely no pain, at all... The nose changing shape, i felt discomfort, and did have some bleeding but nothing severe. Never had a bloody nose in my life, till this... Oddly, my nose now has no feeling... Tissue death, for sure, which is what wegeners goes on to do... Wegeners is in my records as most probable, not a doubt for a second on this. Patient directed to specialists, ect, ect. Only the specialists arent specialists in wegeners. Needle in a hay stack, here, but possible... I do not blame my primary for being frightened, it is what it is... Not easy for her, im sure... If treatment comes in time, i see it as Gods will... Either way, its his will... Maybe like i mentioned a while back, my life/ death can bring some kind of attention up here to wegeners. It us certainly needed! If i can help someone, than this is fine with me, doesnt mean im gonna sit back and do nothing, no not at all... Sorry for typos... Debra...

[annekat]

Whatever. My main point was in saying Wegeners isn't the only medical condition that can cause saddle nose. For our purposes, Wegeners is the most important and likely one. But the collapsed nose is only an unfortunate result of the underlying disease. The saddle nose in itself is not life threatening unless it prevents a person from breathing. None of us wants a saddle nose, those that have one learn to deal with it, and I don't blame anyone with WG who doesn't have one for worrying about it or wondering what their chances are of getting one. Early diagnosis and treatment, along with proper care of the nasal and sinus areas, is the best way to prevent it.

[debra]

Heres one that shocked me, till reading the mechanism of why, crohns diesease! Not sure if i spelled that right, but there are some here with both, if i remember correctly... Real fastinating, as i never would have thought this... And then theres my all time favorite, cocaine addiction! Favorite cause im pretty sure those with nose involvement have been asked this... Alysia, theres even more than this, but needless to say, it happens... Debra...

[annekat]

I think Alysia already knew about the cocaine thing. It has been discussed on here a fair amount and has already been mentioned in this thread. We were talking more about medical conditions such as autoimmune ones. I know someone with Crohn's disease and it is an autoimmune inflammatory bowel condition.... if you are saying saddle nose can result from that you are going to have to post a link..... yes, there are people on here with multiple autoimmune and other conditions. If I had Crohn's and WG and a saddle nose, I'm pretty sure the saddle nose would be from the WG and not from the Crohn's.

[annekat]

www.ejcrim.com/index.php/EJCRIM/article/download/123/72 (http://www.ejcrim.com/index.php/EJCRIM/article/download/123/72)‎


You are right, Deb, saddle nose can happen with Crohn's, though it is very rare. Most explanations were not complete, but the above one was a PDF that went into a lot of detail. I had to capture the link off the Google results and can only hope that it works here. If not, one can Google Saddle Nose and Crohn's. Just checked, the link works, as long as your device can download it.

[Alysia]

I think that the case in this article is not a case of crohn but a case of wg with colon involvment. My gastro dr. Said that crohn disease and WG looks exactly the same in colonscopy. Same granuloma. You cant differentiate. Also in crohn there is positive C anca, although not in this case. They ruled out wg because she didnt have involvment of kidneys, lungs and brain, but we all know that it is not a must in order to have wg. We do have weggies friends like that.
Maybe I am wrong but this what I think. Saddle nose is mostly ours.

[annekat]

That wasn't the only article, just the one that would show all the content... anyway, they all mentioned that in Crohn's there is sometimes, very rarely, "extra-intestinal" involvement, not only in the sino-nasal area, but the joints, which also sounds like Wegs, but we all know we aren't the only ones with joint pain. I didn't read it thoroughly but in at least one place, the granulomas present were referred to as "non-necrotizing", and we know ours are necrotizing, I think... meaning causing tissue death. A perforation in the septum can cause saddle nose without the tissue being eaten away. Mine started as a perforation and the whole septum was eaten away later, but the saddle nose was complete with just the perforation, since it happened at the spot where the septum was attached to the bone. Anyway, I think we are getting a little technical, although I understand, Alysia, why you with colon involvement would be more interested in the details. I don't quite understand why we'd want to lay claim to saddle nose as "ours" and why we'd rule out other possible medical reasons for the breakdown or perforation of the septum. I do think that although Wegs is said to be rare, it is less rare than most of these other conditions in which the nose can collapse, so a saddle nose with other typical Wegs symptoms in the nose and sinus area would definitely point at Wegs first and foremost.

Looking back at the original post, several months ago, Ian said he didn't have crusting or bleeding and that he didn't feel the nose had collapsed, just changed shape. He'd been dealing with the pain for ten years. Some of us thought it still sounded like Wegs, others thought it might not be. He mentioned ear problems, which could be Wegs, but could also be relapsing polychondritis, which I read elsewhere mainly causes ear problems but can also cause saddle nose. He mentioned a butterfly rash, which I had at dx, due to inflamed sinuses. He mentioned strawberry gingivitis, which can be Wegs, but needs to be biopsied. A main issue was that he had had bad experiences with doctors and seemed to avoid going to them. I hope by now he has been to a good one who can get to the bottom of what has been going on with him for 10 years. Ian, if you are still there, has there been any progress in getting a diagnosis and treatment? We'd love to be updated.

[Titus3:2]

The majority of people in the USA with a saddle nose are probably cocaine user's.Saddle nose seems pretty rare in any case.Never meet anyone with syphilis.Just my opinion.

[debra]

Keith, hi. Interesting cause i was thinking, how would we know anyway, unless we had seen them before, ect. When seeing a person, we dont know, how would we know whether its just their nose! Or say a boxer who broke his nose, or whatever. I agree, cocaine would probably be most probable... Oddly enough, when out, i dont think ive ever really noticed someones nose! Unless it was a little loud, like say barbera streisand, or something... Sarcoids is a big one associated with saddle nose as well. Think i mentioned that already though... Debra...

[annekat]

Sitting in my booth at the Farmers Market, watching people go by, I look at noses a lot, and it's because of saddle noses. I only saw one that I thought was a drug user, his nose was just not right. Others have naturally turned up or "ski jump" noses. I may have seen one or two that could be saddle noses but the people didn't look like drug users. Not all saddle noses are the same. I don't get a lot of chance to look, because they are walking by, and I don't want to stare. But overall, very few if any saddle noses, besides mine. It might be different in a big city where there might be more cocaine users. And addicts are less likely to be at a farmers market, I'd think. Not that everyone there is strictly wholesome looking. Anyway, it's one of the ways I pass the time when not much is going on.

[debra]

Anne, hahaha... Ski jump nose??? So funny... Now i will be staring at peoples nose... What i was wondering, is how if at all, peircings would be with nose involvement? Like people with a peirced nose, then develping wegeners, would it be an issue, ect... Well nose involvement,or whatever involvement, beauty is within, right? I wish the emphises in the world, was less focused on the outward, and more focused on the inward, but society says different... Wishful thinking... Anne, i used to love going to the mall when i was young, and just people watch... A trip, for sure! Deb...

[Titus3:2]

Hi Debra,,Sarcoidosis the cause is unknown.Sounds familiar.I don't gawk at people,but I do look for people with a saddle nose.I imagine what this or that person would look like with one,and they don't look better.My nose looks like it is made out of rubber.Ann,you wouldn't need to give me a double take if you saw me at the farmer's market.I hate my saddle nose.Ski jump nose.Like Bob Hope.Ians is probably not receiving notifications about this thread ,or has moved on.Let us know Ians

[debra]

Hello, Keith... Ya, sounds real familiar, right? Keith, you have an awesome persinality, and again beauty is with in, therefore, youre beautiful, saddlenose, or not... Man, i hate that word! So i will just say, nose involvement, to the max! I wonder, since i have nose involvement if it will collapse, but then i know, the more i worry, the more stress the more symptoms, the more likely it will! Used to get sick, just worrying, but learning everyday, acceptance and patience. Neverthless it is scary... Cant change a thing by worrying, so... A waste of energy, and i need all i can get! Haha... Nice seeing you, Keith... Debra...

[debra]

Sorry, for the above typo! Deb...

[vdub]

Deb, is there any chanse you cud quid worryeng bout typos?

[debra]

Haha... Vdub, funny you should mention this today! I stopped being sorry, at 814am, this morning! Dont ask! Actually i think i had a post i just left, without my usual apology, a few days back, and it wad so hard to just leave it! I had withdrawl symptoms, and everything.. i did however recover completely, and then realized after wiping away the sweat, it was ok! No more apologies! SORRY!!! Thanks Vdub! So funny... Debra...

[cjhnsn29]

Hi Ians! I agree with all the comments that were said to you from the other WG people. I agree first you might need a better ENT doctor. I also have the saddle nose and alot of facial problems. My ENT doctor said that he believes I have WG. Unfortunately you have to have more symptoms before they could actually diagnosed the WG there's no test that says you have it unless it attackes other areas. My Internal medicine Dr. Could not agree and treat me for it due to it was just in that area. I saw Dr after Dr and it was finally confirmed when it attacked my upper mouth and teeth also had a mass in my lung. Then they all agree. I am with you in pain everyday and I also get fustrated... Like my WG friends wrote it's way too long to not be diagnosed and it might help with new ENT doctor. C.J.

[debra]

Cj, hello. Nice meeting you. I was wondering if you could please elaborate on the mouth teeth involvement you have? I have only seen it here once other than myself, so was curiouse what youre symptoms were, ect? Was the bone also effected, and losing gum? Also if they did any special treatment, in regards to youre teeth, mouth rinses, ect. Thank you, and good luck! Debra...