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Long-term sinus issues and multi-system symptoms post-surgery
After many years of mystery chronic illness I discovered that I had serious sinus infection issues. Had the FESS surgery, which discovered a fungal ball and a pseudomonas infection, and thought I was on my way to healing. 11 months of steroid and anti-biotic rinses and, while my sinuses seem more clear, I'm probably worse than before the surgery.
Every few days I'll get a "glob" or fragment of mucus out of my trouble side, and it sends my body into digestive, neurologic and nervous system CHAOS. Doctors look at me like I'm crazy, but it's destroying my life.
I have requested an ENT appointment in AZ where I live and am terrified I didn't make a very good case for myself because I'm in such a bad state. Given the multi-system issues I'm having, I don't know if it's ENT, infectious diseases, or other specialty, which is why I feel like I need a place like Mayo.
Any thoughts or recommendations? After years of terrible mystery illness, I just want to be somewhere that actually cares about making me better, not just telling me "doesn't seem like an issue in my specialty."
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@coyote13 Have you tried a neti pot to rinse your sinuses out at bedtime? I have found it helps me clear out my sinuses while being non-invasive and chemical free for the most part. I wish you well.
Yes I do have a suggestion - have your upper teeth checked. I had an assessed tooth (upper R back) that was never seen on sinus CT. It was only found after the infection ate thru the bone and caused a sinus tract into my hard palate. My ENT biopsied the "bump" in my mouth to make sure it wasn't cancer (it wasn't). About a week after the biopsy the bump returned. Asked my dentist during routine exam about it and he said it could be caused by my teeth. Did some X-rays but unable to see that area clearly since it was so far back so he referred me to endodontist who did a CBCT scan and found the problem. If you've had dental work on those teeth it's very hard for a regular sinus CT to pick it up because of "artifact." I actually had another sinus CT done after my abscessed tooth was being treated and the missing bone and tooth abscess were not seen. I mention your teeth because you said you had a "bad side". If you search "unilateral sinusitis" results will come back as probable tooth involvement