Saddle Nose

[JanW]

I was going through these old posts and as for my saddle nose, I really think it developed in less than two weeks. First it was a bump on the nose, and almost a total collaspe. Having lived with a nose I thought was really cute for the first 44 years of my life, it was difficult to take (especially since I wasn't sure it was a saddle nose, and didn't have a WG diagnosis when it happened). The ENT says that it's nothing to do with the inside of my nose (I thought for sure he would find a hole in the septum -- that's how I thought these things developed), rather he said that it was tissue death on the outside, common to WG patients (but overall even for weggies, it's pretty rare). Interestingly, this doesn't mean that you are having a flare, and it also doesn't mean in can't get worse (same with subglottic stenosis). Fixing it would involve cartilage from my rib and I don't know if I want to go through that -- I think it would be most noticeable in photography -- no one has noticed it but my husband -- not even my 12 year old daughter, who would certainly let me know if something was wrong with my looks.

[Brooke]

I develped saddle nose and my ent used cartilage from behind my ear to fix it. so far so good with the outcome

[Sangye]

Jan, thanks for that info. Was it a Wegs ENT who told you the tissue death wasn't indicative of Wegs activity? Same question for SS.

I'm having outer tissue changes but not much happening inside. This all began and has progressed during a flare.

[elephant]

After I showed my sister pictures of people with saddle nose and how fast it can happen, I think she stared at my nose for two whole days. Even came up close to examine it and told me to keep a close eye on it.

[JanW]

Sangye, no the specialist didn't tell me that -- it was something that I read in research papers on the web, but the sample was small and there certainly could be some disagreement about that. The rheumo was sort of surprised that the nose collasped with no pain or discharge but my ENT didn't seem surprised at all (and he's the guy who fixed 200 of them). The subglottic was totally uninflamed though upon examination though, and the ENT suspects it hasn't been inflammed in years. The reason for the fix though is the extent of the damage, as well as the fact that even scar tissue can move around, eventually lead to a total blockage of the airway. Interestingly, with just the slightest touch on the cartilage at the bottom of the nose the ENT could tell it was unaffected -- I never felt anything different in the portion that collasped, and I suspect that even if you see a collaspe coming, you might not be able to stop it.

[Sangye]

I found this article on the VF website about SS.

These are 2 portions of it that I found very useful:

"Dr. Lorenz finds that as long as the WG is not active, the SS stays quiescent . Once the patient has an exacerbation, the SS can flare and then the body’s natural ability to create a stenosis from the scar occurs and the physician and patient struggle to get the airway widely patent while preventing further scarring."

"An important point to understand about subglottal stenosis is that it acts independently of generalized WG disease and systemic therapies. If somebody flares, it doesn’t mean the larynx will get worse. If the larynx is getting worse, it does not mean you are in a WG flare. Lastly, it means that systemic immunosuppression usually does not help reduce the severity of the subglottal stenosis."

It sounds like once it's formed, the SS can do its own thing regardless of Wegs activity. It worsens due to increased scarring, not Wegs inflammation. Am I interpreting this correctly?

[elephant]

That makes sense, but wow. So scarring is the issue. Thanks Sangye, that's why I love this site.

[katwoman]

I can't pinpoint exact time of saddle nose, just noticed gradual changes and kept looking at it in the mirror, one day when my mum came to visit and said she was looking at old photo's at home where i am caught side on and she said 'I couldn't help but notice how much your nose has changed.'

And it seems to continue to change with more damage. Even recently, I caught up with a friend I hadn't seen for 12 months and she couldn't get over the change to my nose - it seems to have fallen in one side so causes a dark looking shadow as it dips in (hard to explain). I've had a few ask me what happened to my nose (how embarrassing is that for a woman), so I tell them its all part and parcel of being a former professional boxer.. ;-) lol!

[elephant]

Katwoman, that's great a former professional boxer. Hee, Hee...

[JanW]

Sangye - that's my understanding of SS exactly. I also think that they don't fix it (at least Lorenz doesn't) until you're down by 50 percent (and I'm down more). Greater than that and you run the risk of literally waking up one day not being able to breathe (and a trach). Apparently, my ENT says, that once I feel what it feels like open, I will "never let it get this bad again" meaning that I would go to him to actually have it dilated more if I feel it closing up. There's absolutely no evidenence of inflammation or disease activity in my throat now, so nothing to biospy, and there was nothing big enough in the nose either, although it is slightly inflammed. It will be interesting to see what the rheumo says is the treatment plan today.