Hi all,

I just joined so let me introduce myself. I'm Ali from New Jersey and was just diagnosed with GPA. I've been suffering with it half my life but had no idea the disease even existed. A little about my journey...

Back in 2007 I was about 20 years old, I discovered I had a septal perforation. I saw an ENT and we figured the hole was a result of overuse of steroidal nasal sprays (I have had chronic sinus infections since middle school or earlier) and the fact that I was living in a basement apartment at the time with dry heat (I had crusting and bleeding). My ENT attempted surgery to close the hole using my existing cartilage, however there wasn't enough cartilage to close it, so I opted for a septal button (I couldn't stand to hear myself whistle). Over the years, my seasonal sinus infections turned into chronic, year round, every season. Environment didn't matter, whether I was in Asia, Europe, or the West coast, the Neti Pot came with me. The sinus infections started to last longer and grow more painful. Then they started to be accompanied by ear infections. I eventually had my ENT put tubes in my ear because I had tinnitus and airplane ear even after the infections would clear.
In August 2017 I noticed my septal button was no longer in place. My ENT replaced it with a new button. The hole grew tremendously, he used the biggest size they made and it still did't quite fill the void. Spring of 2018 I realized the bridge of my nose collapsed. Google informed me it was known as a saddle nose deformity. I found a plastic/reconstructive surgeon who had experience with repairing large perforations and saddle nose deformities. I opted for the more extreme procedure, an attempt to close the hole, not just build back the bridge. He took a piece of my skull and placed it where the septum would be and would use cartilage from the back of my ear to build the bridge and surround the bone.
Post surgery, my surgeon asked me if I had any history of trauma. I said no, he then told me when he went into the back of my ears my cartilage was "mangled" and unusable. He had to take cartilage from the front of the ear and advised I may want to see a rheumatologist in the future. 2 weeks after surgery, my ear became horribly infected, my rook detached from the wall of my ear and filled with pus. My surgeon said the chances of a cartilage graft getting infected is a 1-2% chance. And btw, when he actually got in there my septal perforation was roughly the size of a quarter. My surgeon urged me to see a rheumatologist.
I saw multiple doctors, one rheumatologist who completely dismissed me, ran some blood work and told me what I was experiencing had nothing to do with rheumatology. I saw another rheumatologist in NJ and an ENT out of Mount Sinai. Neither wanted to diagnose me since my ANCAs were negative and my kidneys are not affected. They referred me to vasculitis experts. I was finally diagnosed from a Dr. out of the Hospital for Special Surgery in NYC. She started my treatment right away and I just finished my second round of Rituxiamb yesterday.
I worry about the results of the surgery I had over summer. Ironically, it was done to fix the damage Wegener's had done, without knowing it, while the disease was still active. The tip of my nose completely lost its height, it now droops downwards. The cartilage that covered the bone in my nose is slowly disappearing. I don't look myself anymore and my self esteem has taken a little hit. My surgeon would like to help fix it, but that may be a long while from now and more difficult to pull off.

At this point I am just so happy to have a diagnosis and a treatment plan. I feel like everything I've gone through over the last decade makes so much sense now. Looking back, I don't know how I didn't realize there must be something deeper. Maybe I should have googled more, asked more questions... It sounded so crazy to explain to my friends that I had to get reconstructive surgery because my nose collapsed due to an addition to Vicks 24 Hour Nasal Spray 15 years ago.

Anyway, thank you for reading and thanks for letting me be a part of your community!