chronic fungal sinusitis/asthma

[daydreamer1]

I was diagnosed with fungal sinusitis and underwent CT Sinus ENTRAK surgery 12/08. Afterward b/c 30 day fungal culture neg.,and pseudomonas found in left maxillary sinus, ENT changed diagnosis. treated w/Cipro, no other f/u for fungal. I told them 3 wks postop that green thick exudate had returned w/smell, but they declared me "cured". ID refused to do another culture b/c ENT said in notes that I looked great. I got 2nd opinion from another ENT week ago. Definite fungal sinusitis, and I am feeling it. Tired, lots of discharge, hard to concentrate, eyesight worsening. He says need surgery again soon. He doesn't want to tackle it. This would be my 4th sinus surgery. first two were done 20-25 yrs ago. Went on 20mg/day oral steroids b/c asthma not controlled with Advair 500, Flonase and Singulair. Titrating down now/ 2 weeks. Every time try to sinus rinse, goes in ears. Tried sinus flush method, went in ears and hurts. Do I find the best clinic in country for this and f/u with local ENT, or go to a 3rd ENT here in Central Il. and hope for best? Who is considered national expert on chronic fungal sinusitis? How do I find out why my immune system got whacked?Do I also go to Allergy/Immuno.? Should I have house tested? I have some med background, educated  50yr white female,single, 2 adolescent boys moved to family farm 2yrs ago, and sunk most of money into fixing up.Hard to move. Understand no cure, lots of doc visits and bursts of steroids.  Do have good insurance!

[National Jewish Health]

You have experienced a dreadful series of events, are definitely not “cured” and remain at considerable risk from what may be invasive fungal sinusitis.  The invasive form of the disease seldom occurs in individuals who are immunocompetent; that is, who have no immunodeficiency state.  But, having diabetes mellitus also predisposes people to fungal sinus infection, in particular to a fungus called Mucormycosis.  Should your infection prove to be invasive, and your current and previous doctors should be able to render an opinion on this, a careful evaluation of your immune system will be mandatory.

I personally know of no experts in fungal sinusitis but a review of the literature suggests that the authors of the following abstract, situated at the University of Pennsylvania Medical Center in Philadelphia, may have an abiding interest in this disease.  I suggest that you not consult with a “3rd ENT here in Central Il”.
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Authors
Full Name: Lanza, Donald C. Dhong, Hun-Jong. Tantilipikorn, Pongsakorn.
Tanabodee, Jirayu. Nadel, Douglas M. Kennedy, David W.
Institution: Division of Rhinology, Department of Otorhinolaryngology-Head and
Neck Surgery, University of Pennsylvania Medical Center, Philadelphia,
Pennsylvania, USA.
Title Fungus and chronic rhinosinusitis: from bench to clinical
understanding. [Review] [42 refs]
Source Annals of Otology, Rhinology, & Laryngology - Supplement. 196:27-
34, 2006 Sep.
Abstract: Although fungus-related sinusitis has been described for at least 2 centuries, a more detailed pathologic description of the problem as it relates to eosinophilic disease was not detailed until 1983, when "allergic fungal sinusitis" was described histopathologically. Until then, most fungal sinus disease was perceived to occur in immunosuppressed diabetic patients with invasive fungus. It is now acknowledged that depending upon the immune status of the host, fungus-related sinus disease can take several forms. Interest in this subject matter was intensified in 1999, when it was suggested that fungi might be an important cause of most cases of chronic rhinosinusitis. This hypothesis remains controversial, and there is mounting evidence to support the multifactorial nature of chronic rhinosinusitis, which may include fungus. In fact, etiologic factors for all forms of fungus-related sinus disease are still poorly understood. The prevalence of the disease and the dominant fungal pathogen appear to vary in different geographic regions and probably are related to individual host conditions. Immunoglobulin E-mediated allergic reactions to mold appear to be associated with disease in some patients, but not in all. Although antifungal therapy is known to be lifesaving for invasive disease, its role in extramucosal disease is less well defined. Preliminary trials suggest that some systemic and topical antifungal agents are of clinical benefit in extramucosal disease. Since sinus fungi are rarely invasive in immunocompetent individuals, it is not clear whether the effects of the antifungal treatments are a result of the antifungal action itself, or due to additional properties these drugs possess. This review summarizes the available data and presents some of our clinical and experimental findings as to the role of fungus in chronic rhinosinusitis. [References: 42]
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I suggest that you contact Dr. David Kennedy at ***@****, one of the investigators involved in this study promptly.  And, if Philadelphia is not convenient for you, I am sure that Dr. Kennedy would be able to refer you to experts in your geographical area.  I urge you to not delay in pursuing this.

You may want to share this message and abstract with your doctors.

Good luck.

[daydreamer1]

Thank you for your response and the abstract. It supports what I have read in the literature. I will contact Dr. Kennedy as soon as possible, and your response highlights the need to not put this off. I am so tired some days that it is hard to focus on what is important, like my health..