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.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
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.