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Thread: HELP! My nose

  1. #1
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    Post HELP! My nose

    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.

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    Default Re: HELP! My nose

    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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    Default Re: HELP! My nose

    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.

    Quote Originally Posted by Masha View Post
    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.

  6. Likes Helen, BenHornsby, Alysia liked this post

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