Posted , 4 users are following.
I have been struggling with WG for a while. It is mostly in my face. I have the saddle nose already and now I am having problems with my mouth. The teeth and jaw ate not getting enough blood supply and I had to have my teeth removed. Does anyone have this same problem?
0 likes, 5 replies
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sarah65055 Coee
Posted
Bless you. I don't have the saddle nose, but I'm very aware that I can get it. My parternal grandmother had a saddle nose. I was always told that she had a sore on her nose and they had to cut it out. I've always wonde if it was Wegener's, but she lived to be 89 years of age. I was diagnosed in June, 2009, but I had the symptons all of my life. I have lost all of my teeth. I worked for years trying to save them, but about 3 years ago, they all broke off it the roots, so i had to have them removed. I have crusting in my nose, especially in the right side. My face has deformed to the right by about 1/2 inch. So my upper sinuses don't drain well. I've lost my hearing in mine right ear and my sight in my right eye. I have had a collapsed lung, that is the way I was diagnosed. Have faith and I hope you get better.
Coee sarah65055
Posted
Sarah, I have had problems for a while now.. I am controlled with medication. It's not easy. I am sure you know that. I started with a staff infection from the hospital and it was so close to my brain and I. My ENT doctor actually said he wasn't sure I would make it out of surgery. After that I ended up with the saddle nose.that was the first sign. All the Doctors I went to kept saying it was a sinus infection. I finally went to E.N.T doctor. He stated he was super it was wegners. But actually couldn't put the label on it. He said you have to have more systems Because there was no test to prove it. I then ended up with my gums not getting enough oxygen and my gums died and went over top of my teeth. Then they became loose and I had to have them all removed and had Bone grafting to pack the whole in my sinuses.. the worst part is that I was a dental hygienist for 20 yrs..that made it worse.... This is part of my WG experience..Coe
gucci29197 Coee
Posted
sarah65055 gucci29197
Posted
I'm am in treatment now with a ENT doctor. He has me on Bactrim 500mg for 30 days. I'm feeling a little better but I have been very sick. I was using too much over-the-counter nose spray because I was so congested in my sinuses and it was affecting my memory, I have found out that the deformation is probably caused by Short Limb Syndrome. MY right arm is about 5/8 inches shorter than my left. Even my head leans to the right. I have had this all of my life and never until I came down with Wegerner's.
I've been so sick that I haven't got on the internet for a while. Thank you for concern.
joshuapryce1987 Coee
Posted
Things should improve over time. Eat and drink carbs and exercise.