HELP! My nose

[Masha]

I am a 68 year old female, diagnosed with Wegeners a year ago. Before I tell you the big picture, I will tell you what I am dealing with tonight. I have two holes in my nose, one on either side of my nostril. I will be seeing my ENT (who diagnosed me) tomorrow. I just looked up what this surgery is all about -three years of surgeries, ribs and cartilage from other parts of your body! I am not up for this. My nose has not fallen on the outside.....yet. I have a bright, caring rheumatologist.

[NatriceRomeo]

Masha, only you know your body & what you can physically deal with. To be honest with you having holes in your septum sounds pretty terrible too. On the other side- I have had a septoplasty done for a significant deviated septum. Of course that ENT went elsewhere. I started having severe sinus issues & became a human barometer! I went to see another ENT who said that I needed another septoplasty. When I saw my rheumatologist he’s said under no circumstances should I get the surgery. Apparently when you have WG & have multiple sinus surgeries there is a chance of facial collapse. Yes lovely. Not only that but we are immunocomprimised & do not heal well. I would talk to both your rheumatologist and ENT. Talk to them about risks, concerns for pain & healing ect. I understang not wanting to go through years and years worth of surgery. Unfortunately this disease is not going away. So, to look at it in a different way- you are going through treatment for years and years. Also, will this surgery increase your comfort? Things to maybe think about


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[Alias]

Every patient, every situation, is different. If your GPA/Wegener's is not stable, your docs may want to wait longer before even considering surgery. In my case, I have a badly compromised nasal passage on one side, but no perforation yet. I was told I might benefit from surgery at some point, but that the risks outweigh the potential benefits for now. Be sure you are seeing someone who knows about this illness.


I am a 68 year old female, diagnosed with Wegeners a year ago. Before I tell you the big picture, I will tell you what I am dealing with tonight. I have two holes in my nose, one on either side of my nostril. I will be seeing my ENT (who diagnosed me) tomorrow. I just looked up what this surgery is all about -three years of surgeries, ribs and cartilage from other parts of your body! I am not up for this. My nose has not fallen on the outside.....yet. I have a bright, caring rheumatologist.