my journey

[mama2005]

My story is much like everyone else’s. I started havingcommon cold symptoms that I could not get rid of. I went to my local familydoctor she gave me antibiotics and two weeks later I was back with noimprovement she changed my antibiotics and we did this for several months andthen I began having loss of hearing. Againshe blamed it on a cold and gave me more antibiotics until she finally a year laterreferred me to an ENT. The ENT looked up my nose and asked how much cocaine Iused. I looked at him mortified that he just asked me this and let him knowthat I had NEVER used drugs and that I was law enforcement major. He explainedto me that I had a perforated septum. He had a CT scan done and found bonestructure that was deformed he then scheduled me for a nasal biopsy and tubes placed into myears, along with blood work. He was pretty sure he thought it was Wegener’s andordered blood work also. My blood work had lots of flags but my ANAC was normaland the biopsy came back inconclusive. Over the next few weeks I got worse Ihad joint pain in my knees, wrists and hands. I had bloody noses; I was unableto get off the couch for more than half an hour. The ENT went back in and didanother sinus surgery this came back as Wegener’s I was sent off to ClevelandClinic. My doctor was very upset that it took close to two years to get metreatment and a diagnosis. I was diagnosed in November of 2010. I washospitalized put on 100mg of prednisone and did two rounds of rituximab. I began to notice my nose starting too curvedin January of 2010 in a few months it became a very bad saddle nose. I finally achievedremission in October of 2011. In November of 2011 they found I had a subglotticstenosis that was 40%. In February of 2012 I had reconstructive surgery to fixmy saddle nose. To do this procedure my surgeon had to push the hardest he everhad to build a nose. He used my floating rib, and rib cartridge and he also hadto use a metal plate to build me one beautiful nose. I am currently still inremission but seeming to have questionable signs of flare. It has been a longjourney that I know will never be ended but I am very glad to have great doctorsand a great support system to help make it easier.

[mishb]

I'm glad they finally came up with the correct reason for all of your ear and nose troubles, Mama.

It sucks, like with most of us, that it took so long for them to do so.

One day you will put up pictures of your beautiful new nose (for those who are still contemplating getting their nose fixed) to see how great it is.

Take care of yourself

[annekat]

Thanks for telling your story again, Mama. It has many similarities to mine. I did not notice my saddle nose developing, though..... one day right before diagnosis, I suddenly noticed it didn't look right, and was sure that's what it was. It made it a lot easier for the ENT doc to be convinced I probably had Wegener's. He stayed late at his office that day to get my biopsy done on the spot.... great guy.

I, too, would like to see a photo of your new, beautiful nose some day, whenever you are ready and able to post one!

[Barbara N]

It sounds like you are doing great. My story is sort of similar they kept giving me antibiotics until I got a fungus in the mouth that was so bad and they still gave me stronger antibiotics to kill the fungus. When I changed to a better hospital a doctor recognized it as a fungus and gave my Mycostatin in an oral solution and in two days it was gone. Having a good team of doctors seem to make all the difference Good luck and ánimo from Spain