sinus surgery

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Has anyone had sinus surgery due to complications with Wegener's?

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16 Replies

  • Posted

    Also months of sinus infection which led to an eye absess
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    • Posted

      And my tear ducts arent draining properly..was your surgery successful..any problems after surgery
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  • Posted

    Hello. Yes, I have had to have 2 surgeries on my sinuses because of the Wegeners. Two bilateral facial deglovings to remove bony growth in my sinuses and scrape away scar tissue. Are you faced with this prospect? 
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    • Posted

      I had sinus surgery 3 weeks ago. After months of having a sinus infection. To clear infection out apparently reconstruct nose. Due to infection now WG active. Treatment needed. Doctors want me to get Rhituximab treatments. Are you familiar with this why this as oppposed to other treatment....I will be asking. Hope you are feeling better? I relapsed had No idea very scarry bloodwork was good. Apparently infection spiralled out of control and brought WG back. How was I to know I had relapsed. I always followup with doctors
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    • Posted

      It is very scary! But you can be well again. Get on the ritixmaub and you will notice a vast improvement. Everyone has different signals that their WG is active again. Most often it's sinus related. Mine is my sinuses, struggling for air (but I also have asthma so it's hard for me to tell the difference sometimes) and joint pain in my elbows. My bloodwork also does not always indicate a flare up. 
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    • Posted

      Thank you for the info. Waiting for these treatments to be set up. Yes very scarry and off work again. Are you still working? So these treatments put you in remission and kept you in remission? Back on prednisone for inflammation dont like this stuff. What can we do not many options for treatment. Side affects Rhituximab? Thats good so your feeling better. How long after treatment until you felt better?
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    • Posted

      Rhituximab treatments completed Feb 2nd. Still very fatigued. Sleep.a challenge sweating at night etc cant fall asleep without sleeping pills. Thanks for info hope you feel. better soon
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  • Posted

    I have had sinus surgery and FESS (functional endoscopic sinus surgery) before being diagnosed with Wegeners ( although it could have contributed to the illness).
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    • Posted

      Sorry to hear this. I got a right eye absess from a sinus infection that spiralled out of control. Docs worried about me losing my eyesight. Very scarry unfortunately looks like i will. Still. Need tear duct surgery eyes constantly watering and apparently bacteria built up in tear ducts.
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    • Posted

      This infection brought WG back so i am told
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  • Posted

    I don't work anymore, I had to retire:  combination of age and illness.   Azathiaprine is my drug of choice.  Cyclophosphamide etc didn't agree with my system so I eventually ended up on Aza.   If you push your body, it will push right back and the result will possibly be a 'flare'.  Listen to your body and do what it tells you it needs.  Try to incur as little stress as possible, it can be a factor.  Take care and keep well.
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    • Posted

      I know stress is bad. I can"t retire yet have to work at least 5-6 more years to get pension. Financial and worrying about this illness too much. Right now have to be real careful not to get sick so confined to house, difficult. I hope you feel better soon. How long have you had this illness?
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  • Posted

    I was told by my wegeners (400+ patients with wegeners) not to have any surgery and let the treatment plan work. He was very emphatic about this- good luck
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  • Posted

    This isn't the technical term but I had my sinus's scraped whiled getting a biopsy done. It was to take away tissue and help my breathing. It was the best thing I have done so far , apart from the splints feeling a little uncomfortable it was totally worth it !
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