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Thread: New Member - Newly Diagnosed

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    Default New Member - Newly Diagnosed

    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!

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    Default Re: New Member - Newly Diagnosed

    Sorry it took so long to get a correct diagnosis but many of us have had a similar experience. We just keep hoping that doctors finally get better at recognizing the symptoms so we don't have to wait two or three years to get the right treatment. A lot of damage can happen to our bodies in that interim.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: New Member - Newly Diagnosed

    Hi Ali,

    Welcome to the “club”. I’m sorry that your “initiation” was so rugged. I’m glad that you found us and that a vasculitis specialist is treating you. The treatment she provides should get you to feeling better.

    Several folks on here are dealing with saddle nose deformity, and I expect they’ll chime in soon to share their experiences.

    Let us know how you’re progressing.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: New Member - Newly Diagnosed

    Welcome Ali,
    Sorry to hear you have gone through some very difficult times, but glad you found us. This site has been a life saver for me. I have learned Wegeners is a disease that has many tentacles, and we can all experience a variety of maladies. As Pete said there are people here who are dealing with saddle back noses. My nose has a hole in it, but I will cross the saddle back nose when I get to it. Yes, mirrors are no longer my friends. Prednisone does nothing for the looks. But that is another story for another time. Keep your chin up, and don’t hesitate to ask questions.
    Masha

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    Default Re: New Member - Newly Diagnosed

    Welcome Ali,
    Pleased to hear you finally got a diagnosis. It sounds like Wegener's is only effecting your nose, so that's one good thing. With the treatment you're now receiving and your knowledge of what to look out for, you're in a much better place than the last few years.
    Diagnosed April 1995

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    Default Re: New Member - Newly Diagnosed

    Very sorry to hear about your nose issues. The positives you can take from this is it appears the disease has not spread to your lungs or kidneys, where life threatening damage can occur.


    Now that you have a treatment plan you are on your path to recovery. I recommend you deep dive the information provided on this forum. Some of it can literally save your life. If possible, team up your local doctors with a Vasculitis specialist (ex: Mayo, Hopkins, Cleveland Clinic, Mt. Senai). I am thankful for the "by the book" treatment plan I get from my local doctors, but nothing can beat seeing a specialist who only sees vasculitis patients.


    I hope you can get the cosmetic surgery necessary to resolve your nasal issues. Self Esteem issues can impact body inflammation, and inflammation is GPA's best friend. You don't want inflammation.


    Best of Luck...

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    Default Re: New Member - Newly Diagnosed

    Welcome to our WG family Ali.

    I have developped a saddle nose during my first wg years. Somewhere between 2008 to 2012 I didn't get the right treatment (only pred and bactrim, no rtx). I had constant nose bleedings and huge crustings. my nose collapsed during 2012. Only after 2 rounds of 2000mg rtx, 6 months between each round, my nose stopped bleeding. I still have some crusting but not bloody unless my wg flares or smolders.

    I always wanted a small nose so I got it for free. I am glad I had enough nose to use

    And I also say that after the ressurection I will ask to keep my saddle nose: I earned it decently, with blood, sweat and tears, literally.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: New Member - Newly Diagnosed

    Hi Ali,
    It sounds like you had a rough go. Welcome! This is an awesome place to find support.
    How are you feeling now since you started treatment? Are your sinuses and ears any better?
    Natty


    Sent from my iPhone using Tapatalk

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