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sinus surgery

Posted , 4 users are following.

dog7
dog7

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

0 likes, 16 replies

16 Replies

  • dog7
    dog7

    Posted

    Also months of sinus infection which led to an eye absess
    • dog7
      dog7

      Posted

      And my tear ducts arent draining properly..was your surgery successful..any problems after surgery
  • misshigan
    misshigan dog7

    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? 
    • dog7
      dog7 misshigan

      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
    • misshigan
      misshigan dog7

      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. 
    • dog7
      dog7 misshigan

      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?
    • dog7
      dog7 misshigan

      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
  • rita50303
    rita50303 dog7

    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).
    • dog7
      dog7 rita50303

      Posted

      How are you feeling now? What treatment/meds are you taking?
    • dog7
      dog7 rita50303

      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.
    • dog7
      dog7

      Posted

      This infection brought WG back so i am told
  • rita50303
    rita50303 dog7

    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.
    • dog7
      dog7 rita50303

      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?
  • Tr1957
    Tr1957 dog7

    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
  • Mikkib28
    Mikkib28 dog7

    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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