I have had multiple sinus surgeries that resulted ultimately in creating one big sinus cavity in my face (removing all small sinus cavities). I also had a transphenoidal hypophysectomy and later a removal of a fungal mass in that area. Following that surgery, I developed an osteomyelitis in the same area and began frequent bouts with severe bronchitis and sinusitis. The osteomyelitis was surgically removed but the breathing/bronchitis episodes continued. PFTs showed uncontrolled asthma (I have multiple allergies and intrinsic and extrinsic asthma). My sinus surgeon told me that my sinus cultures had 2 organisms--a staph (not MRSA) that we did treat, and a fungus 'that they do not culture and goes untreated'. I continue with periodic sinus infections that progress to bronchitis. I also have had to see a pulmonologist who believes I will have to remain on the several asthma medications that he prescribed. My sinus surgeon told me that on scope, he sees the infected mucus and says that it is recycling--sits at the back of the sinus and so thick it becomes immobile with other secretions dripping over that an on down into the upper respiratory tract. I cannot take Mucomist because it causes headaches (I also have migraines). We tried Alkalol nasal rinses (and I have already been doing saline nasal rinses as well). I cannot tolerate these very frequently because it really hurts my ear (and I have been treated for ear infection with my most recent bout of sinusitis/bronchitis last month. Can anything else be done? My spouse and I were under the impression (from my sinus surgeon) that we could expect repeated infections because of the recycling but there really was nothing more at this point that could be done (other than treating the symptoms and the bacterial, but not the fungal infection). I also have multiple drug allergies which has left us very few options in the way of antibiotics. My PCP also told me that antibiotics could make the fungus colonize more? Thank you.
Your doctors seem to believe that the fungus is not a cause of your problem and/or, in any event, untreatable. This is not correct. Fungal sinusitis, both allergic and invasive, is common and may even occur together. Any of a number of fungi can be the cause, with Aspergillosis and Mucormycosis more common than some of the others. Your fungal sinusitis should be treated and treated vigorously, perhaps best under the supervision of an infectious disease specialist, preferably one with experience in the treatment of fungal diseases.
Another, more remote possibility, is that the underlying condition is an immune condition, rather than solely infectious, one such condition being Wegener's granulomatous. Both biopsies and blood tests would be necessary, were there any reason to suspect this diagnosis.
We strongly urge you to get a second opinion, from an infectious disease consultant. You may want to share this message with your doctors.
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