how many of us have saddle nose ?

[annekat]

It is interesting that people still get saddle nose after successful treatment early on for WG. Mine happened right around time of dx, but I hadn't been treated yet and had symptoms in that area for 2.5 years previous. I know that I still had a septum when it happened, but it had a hole in just the right place for the cartilage to lose its support. Now, I have no septum or turbinates and all the thin sinus bones have eroded so there are no distinct sinus cavities anymore. All that happened during my treatment for WG over the last 3.5 years, although things have gone well overall, looking at my bloodwork, energy levels, etc. I did have a couple of mild to moderate flares, so I suppose the further damage could have happened then. Despite all that erosion, my saddle nose hasn't gotten any worse, I don't think, from when I first noticed it.

[miracleshappen08]

I have it!! And it is horrible!! I have breathing problems cuz of it. I hope to have surgery to fix it.


Miracles do happen!!

[Jayne 14]

Miracles do happen
I dream too
Hate my nose



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[miracleshappen08]

I hate mine too!! I with you on that one. This disease is so horrible!!


Miracles do happen!!

[Jayne 14]

But in another way my nose helped me - that's what got me diagnosed so properly saved my life !!
The pred weight gain is hard to accept
But since starting treatment my nose has got a little better - slightly smaller & sometimes I can smell a little
The disease can be horrible but I refuse to let it define or change me . I'm still me Glass Half Full . And will get through this .
Miracles will happen for us . I know they will .
🎉🎉🎉


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[miracleshappen08]

Yes the weight is hard. After they took out my lung last year I was in the hospital for a month. I went from 92 pounds to 175 when I left. I had to do 4 months of therapy at home.

You are right we cannot let it define us! We are stronger then this. It's just hard when you are in so much pain sometimes.

I'm sitting in the ER right now trying to get pain under control.

[Jayne 14]

Oh that's awful
I've never had pain that bad
From your face / nose ?????
Massive massive hugs xxx


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[miracleshappen08]

It is in my sinus cavity on the right side. It feels like my face is being crushed. Well that is the best way to describe it.
Thanks. It will get better. I have to have them scraped out every once in awhile.

[Jayne 14]

Jesus : scraped out
We have a **** disease
Can't think how to spin that into a positive right now , in the UK we have loads of fireworks celebrating 5th November how about we fire all that **** into the sky ????
God bless xx


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[miracleshappen08]

I have been as to write my story and get it published. So I'm going to get started with that. There is so much I have gone through in the last six years!

But I know that God has blessed my so much! It is hard to see the blessing sometimes.