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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.
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1 ReactionYes 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
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2 Reactions@heisenberg34 Thanks, I'm rinsing multiple times per day, only way to relieve the pressure!
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1 Reaction@arbez Interesting, I assume this just starts with a regular dentist visit?
Yes, mine did. The dentist wasn't able to get a great pic of my very back tooth but saw enough that he that it was suspicious. That got me a referral to an endodontist. You might be able to call an endodontist and tell him/her what's going on and ask if they can do a CBCT scan to check your teeth for an abscess because you're having sinus issues.
@arbez I thought you found it for me! When I looked up the symptons, I thought for sure this was what was going on. I got in really quickly at my dentist and they did x-rays and the CBCT scan, and aren't seeing anything of note. Thanks for posting, gave me some hope today, but my dentist squashed that by telling me I was healthy, lol.
Sorry it wasn't the answer ☹️. Hopefully someone else will point you in the right direction. I know how frustrating sinus issues can be.
Always had sinus infections (40 years). 1.5 years ago ENT recommended NeilMed Sinus Rinse 2x/day. After my last sinus surgery, 6 hours GPS Computer guided surgery about 1 yr ago, my ENT gave me course of antibiotic 4 different times - infections came back within a month. 3 months ago, ENT added an antibiotic to the sinus rinse.
Mupirocin Ointment 2% 30g (Antibiotic) - Dissolve mupirocin with 16 sinus rinse packets of 1 gallon jug of distilled water. Flush nostril twice daily with solution.
After 6 weeks, the gunk rinsed out of sinuses was greatly reduced and I don't feel the sinus infection. At my last follow up (1 week ago), ENT mentioned that sinuses were clear. Yea, finally.
I also take Zyrtec (generic) 1x/day. If the pollen count is high, I've been ok'd to take 2.
Best Wishes,
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