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Sinusitis but can’t get diagnosis
Hi everyone. I got extremely sick after endoscopic sinus surgery two years ago to the point where I was bedridden with fever, fatigue, sinus pressure, dull headache with occasional sharp shooting pains on top of my head, loss of smell and parosmia, sensitivity to light, lost 1/2 my hair, became euthyroid sick, and swollen armpit/neck glands. I’ve been on dozens of rounds of antibiotics and a few rounds of fluconazole. I always feel better with medication — especially with the fluconazole (antifungal). In the course of trying to get a diagnosis, we’ve ruled out autoimmune disease, mono, endocarditis, ectodermal-dysplasia, migraine, trigeminal neuralgia, infected blood clot in sinuses, bone infection, and long-haul Covid. I’ve also been on Xolair for 8 month with the hope that it was partially allergy related (I’ve had zero improvement so far). One thing we did find out is that I have cystic fibrosis. It’s a less intense version than many people have, but has still caused me to have bronchitis, pneumonia, and sinusitis multiple dozens of times since I was a baby.
The other odd thing is that my surgeon told me there was “a lot more gunk up in your nose than we expected from the CT scan”, and I had an active sinus infection on the day of surgery.
My CT scans always show inflammation but no pockets of mucus or physical obstructions. But I’m sick every day with a fever. I’m normally an extremely active person who dances 12 hours a week, etc. But now I do less in a day than my 83 year old parents.
Mayo Clinic denied my request for a visit because the CT scan from 9 months ago shows no mucus or obstructions. When I asked my cystic fibrosis doctor what to do now, he said I shouldn’t peruse an ENT because they are just surgeons and will only help people who can benefit from surgery.
In my gut I believe I have a fungal infection with occasional bouts of bacterial (fever goes up, more green snot and more swollen glands when bacterial pops up). But I think I could benefit from a different antifungal.
My question is, if an ENT (I’ve been to four ENT docs and 2 ENT physician assistants where I live) isn’t the right person to investigate this fungal theory, who is? I’ve already tried the best infectious disease doctor in my area who checked for the scary stuff like an infected blood clot. I have a great fear that I’ve fallen between the cracks and will never get healthy again even though I think I could be.
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@303wendy
Welcome to Mayo Clinic Connect!
I’m so sorry to hear about your continued suffering after your sinus surgery as well as a diagnosis of cystic fibrosis.
Is your cystic fibrosis doctor a specialist in CF? Are you being treated at a major university medical center?
I agree that you should apply to Mayo Clinic. Being diagnosed as an adult may mean milder disease progression but you are in great need now of expert CF evaluation and treatment.
I assume you had applied to ENT at Mayo and you were denied. Apply again under Cystic Fibrosis- ask your CF doctor for help if needed with the application.
I hope that will work out.
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3 ReactionsHi @303wendy, I would like to add my welcome to Connect along with @astaingegerdm and others. Here's an article that I think might be helpful in explaining why a cystic fibrosis specialist may be the key to get help for your symptoms.
-- Chronic Sinus Infections and Cystic Fibrosis: https://cystic-fibrosis.com/symptoms/sinus-infections
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What was the goal of sinus surgery by the ENT?
Did the ENT explain that sinus surgery is not a cure, but an adjunct to ongoing topical therapy?
What type of therapy had been instructed post surgery and moving forward?
And given that many courses of antibiotics, hopefully you are doing things in the mean time to help your overall immune system get back to optimal levels.
Hi Ingegerd. Thanks for your response. Yes, I’m a patient now at the CF clinic at National Jewish and have a wonderful doctor who specializes in late diagnosis, among other things. He has helped me as far as he can, and he’s the one who prescribed the fluconazole for me.
The ENT department at Mayo didn’t want me, but they did take my application over to the CF department for consideration. I haven’t heard back yet, but they just sent it over last week.
Hi - the surgery was for bacterial infections that wouldn’t go away. My ENT believed I would have great relief. At the time of my surgery, I didn’t yet have my CF diagnosis.
He’d given post-operative instructions of saline sprays, Tylenol for pain and Afrin. I followed his orders and became sicker despite that.
Once the illness continued he had me do nasal washes with budesonide and mupirocin (and occasionally another antibiotic whose name escapes me at the moment) for 7 months with no relief. I also had several rounds of prednisone with and without antibiotics.
@303wendy
I see now that you have great care at National Jewish. Hoping that Mayo CF will accept your application. I’m adding a link to Cleveland Clinic that also has a special CF specialty clinic.
https://my.clevelandclinic.org/departments/respiratory/depts/adult-cystic-fibrosis#
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