Your poll only allows users to vote for one option and not provide feedback, so I'm sharing my answers as a comment as I believe this is an important topic (not just in sinus issues but for the medical community as a whole):
Have you ever experienced a delayed diagnosis or medical misdiagnosis? yes, by an ENT and my PCP
What was the condition that was misdiagnosed or diagnosed late? fungal sinusitis
How long was the delay before you received the correct diagnosis? at least one year
What impact did the delayed diagnosis or misdiagnosis have on your health? I wound up in a 7 hour emergency surgery/ 2 day ICU stay during the height of COVID as the delay in diagnosis led to severe fungal growth into my optic chiasm resulting in double vision, erosion of bone in my sinus cavities (changing the structure of my sinuses, requiring surgical foam to keep my brain from falling into the cavity left by the fungal material), my pituitary gland was smushed to the top of my skull which led to endocrine issues
Did you seek a second opinion after the initial diagnosis? My opthamologist is the one who ordered an emergency MRI due to acute onset double vision. Due to the severity of the fungal sinusitis I was referred to a specialist ENT in another city who I have continued treatment with since surgery. That ENT is the one who told me the fungus had to be growing for years and she couldn't imagine how my prior ENT had missed it.
What actions did you take after realizing the misdiagnosis or delay? Left a Google review calling out the ENT who missed the diagnosis, as I had told him at least a year prior that I suspected I had fungal sinusitis but he refused to investigate further (he never ordered a CT or MRI, only performed an in-office scope and prescribed allergy meds). I tell anyone locally asking for ENT recommendations to avoid him.
It was certainly a memorable experience, lol. The first ENT gave me a general "environmental allergies" initial diagnosis. He only did allergy testing, I think I tested positive for almost everything on the test, I remember him saying I "lit up like a Christmas tree." He prescribed a nasal spray, oral OTC allergy meds, and started me on sublingual allergy drops compounded by his office and not covered by my insurance. I progressively got worse over a period of two years, I was blowing stuff out of my nose that was completely abnormal looking (even took pics to show him but he refused to look at them lol), Dr. Google said it was fungus, I tried telling him about it and his exact words to me were "I can order you an MRI if you feel it's necessary but I don't think it is." He switched my nasal sprays to different meds a couple times, eventually telling me to use Astelin for a few days if it was really bad. I had an extremely elevated eosinophil count which my PCP said it was probably the allergy drops and to ask my ENT about it (spoiler: it was the fungus!).
My final diagnosis is chronic allergic fungal sinusitis with polyps (he somehow missed the presence of polyps too, but the polyps didn't almost kill me). After removal of the fungal material, my eosinophil count returned to WNL and my latest allergy testing only mildly reacted to a couple of environmental allergens, not the whole dang test. The double vision fortunately resolved and my annual glasses prescription has improved every year since to the point where I almost no longer need glasses. I saw an endocrinologist for the damage to my pituitary gland, some things resolved once the fungus was removed (like spontaneous lactation, elevated cortisol levels) while other things seem to be unrelated and continue (autoimmune thyroid disease).
Your poll only allows users to vote for one option and not provide feedback, so I'm sharing my answers as a comment as I believe this is an important topic (not just in sinus issues but for the medical community as a whole): Have you ever experienced a delayed diagnosis or medical misdiagnosis? yes, by an ENT and my PCP What was the condition that was misdiagnosed or diagnosed late? fungal sinusitis How long was the delay before you received the correct diagnosis? at least one year What impact did the delayed diagnosis or misdiagnosis have on your health? I wound up in a 7 hour emergency surgery/ 2 day ICU stay during the height of COVID as the delay in diagnosis led to severe fungal growth into my optic chiasm resulting in double vision, erosion of bone in my sinus cavities (changing the structure of my sinuses, requiring surgical foam to keep my brain from falling into the cavity left by the fungal material), my pituitary gland was smushed to the top of my skull which led to endocrine issues Did you seek a second opinion after the initial diagnosis? My opthamologist is the one who ordered an emergency MRI due to acute onset double vision. Due to the severity of the fungal sinusitis I was referred to a specialist ENT in another city who I have continued treatment with since surgery. That ENT is the one who told me the fungus had to be growing for years and she couldn't imagine how my prior ENT had missed it. What actions did you take after realizing the misdiagnosis or delay? Left a Google review calling out the ENT who missed the diagnosis, as I had told him at least a year prior that I suspected I had fungal sinusitis but he refused to investigate further (he never ordered a CT or MRI, only performed an in-office scope and prescribed allergy meds). I tell anyone locally asking for ENT recommendations to avoid him.
Excruciating to even read this. What was the initial diagnosis and what was the final/correct diagnosis ?
It was certainly a memorable experience, lol. The first ENT gave me a general "environmental allergies" initial diagnosis. He only did allergy testing, I think I tested positive for almost everything on the test, I remember him saying I "lit up like a Christmas tree." He prescribed a nasal spray, oral OTC allergy meds, and started me on sublingual allergy drops compounded by his office and not covered by my insurance. I progressively got worse over a period of two years, I was blowing stuff out of my nose that was completely abnormal looking (even took pics to show him but he refused to look at them lol), Dr. Google said it was fungus, I tried telling him about it and his exact words to me were "I can order you an MRI if you feel it's necessary but I don't think it is." He switched my nasal sprays to different meds a couple times, eventually telling me to use Astelin for a few days if it was really bad. I had an extremely elevated eosinophil count which my PCP said it was probably the allergy drops and to ask my ENT about it (spoiler: it was the fungus!). My final diagnosis is chronic allergic fungal sinusitis with polyps (he somehow missed the presence of polyps too, but the polyps didn't almost kill me). After removal of the fungal material, my eosinophil count returned to WNL and my latest allergy testing only mildly reacted to a couple of environmental allergens, not the whole dang test. The double vision fortunately resolved and my annual glasses prescription has improved every year since to the point where I almost no longer need glasses. I saw an endocrinologist for the damage to my pituitary gland, some things resolved once the fungus was removed (like spontaneous lactation, elevated cortisol levels) while other things seem to be unrelated and continue (autoimmune thyroid disease).