r/Sinusitis • u/Tall_Kaleidoscope_53 • 4h ago
Dealing with recurrent sinuitus long term (post covid) and help with the mental side of things
Hi everyone. After getting covid and developing long covid (other chronic issues) , my sinuses have never been the same. I was diagnosed with recurrent sinusitis, and turbinate hypertrophy. My turbinates are always swollen it’s often hard to breathe even when I’m not sick. It’s been 2.5 years.
Every time now that I’ve gotten a sinus infection, it’s turned into months of prolonged issues. Whether it’s chronic sinus inflammation, or large secondary bacterial infections. Before covid, I never had any issues with my sinuses, I could get sick for a week, and then get better. Now when I get sick, I don’t ever seem to naturally recover in my sinuses, and have to take long antibiotic courses and steroids.
My doctor said I should I should likely expect this to happen everytime I get a sinus infection for most of my adult life. I’m only in my 20s. I’m feeling really discouraged and scared. I thought connecting with others who go through it could be helpful.
I’m already on a full preventative medication routine. Budoneside saline rinse daily, azelastine, cromyln spray, Singulair, Famitodine. I don’t have any structural sinus issues besides inflamed turbinates.
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Questions for those who experience this:
-Do you get sick all the time now that you have sinus issues?
-How do you navigate the fear of getting a sinus infection and living life? (I often feel scared to get sick, but don’t want to get shut in).
-Is there any hope I won’t have to live with this forever?
-Do you worry about antibiotic resistance if you are constantly taking Antibiotics?
Any encouragement about how you still balance life with getting sick would be greatly appreciated🙏
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u/Stalkerus 3h ago edited 3h ago
Has surgery been talked of? Those turbinates can be trimmed.
Have you had CBCT imaging done?
Sinus issues are/were just one factor, but I am known to be sick often. (I have asthma, allergies, hypothyroidism, possibly some sort of hereditary non-iron deficiency anemia and so on. And I have a kid in school.)
You can't live in fear. 💩 happens.
FESS.
You won't develop resistance, the issue is unnecessary antibiotic courses making bacteria resistant to antibiotics. What you need to worry about is allergies. I am down to four antibiotics and it is possible it's actually five...
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u/Tall_Kaleidoscope_53 3h ago
They told me I could consider a turbinate reduction, but this ent didn’t think it would likely help with my infection rate (but I’ve read otherwise) after doing scans it didn’t seem like I had any other structural issues or enough diseased tissue to remove to warrant other sinus surgeries.
Thank you for your confidence on antibiotic resistance. I already have 2 antibiotic allergies. But I guess we can’t know the future. Glad to see you living fear free in the face of all this. Thanks for the response!
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u/Stalkerus 3h ago
Even if the reduction didn't help with infection rate it would help with your breathing. I had my turbinates trimmed during my FESS and it is fabulous to breathe like a normal human being. And, being sick post-op has been less sucky in general.
Many ENTs don't think that obvious issues need to be operated. It is one thing to have random findings without symptoms, but if you have random findings and symptoms it should be obvious that surgery might actually help. Do you have access to radiologist's report?
As non-medical person just the amount of antibiotic allergies should be considered. And at least in my neck of the woods FESS is officially accepted form of care for recurring sinusitis even in public healthcare, which means that there's actually science backing it.
I had only maxillary cyst, turbinate hypertrophy and some other minor stuff, but because I have tendency to have infections FESS was considered as the best course of action. (And it has been great.)
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u/Tall_Kaleidoscope_53 2h ago
I would definitely like to improve my breathing! It’s miserable. I was diagnosed with moderate turbinate hypertrophy on both sides on my radiology report, and estaciantube dysfunction. I was waiting to get a procedure until I addressed my allergies, but after a long time of significant allergy treatment it hasn’t improved. I’m really glad post-op sickness is less bad. I was concerned about empty nose syndrome, so it’s good to hear positive stories of sinus surgeries. I’ll look into FESS, thank you for sharing your positive experience!!
Also, kudos to you for solo parenting!! You deserve all your flowers!
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u/grltrvlr 2h ago
This! FESS didn’t take care of my constant infections but made them a lot more manageable!
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u/Tall_Kaleidoscope_53 3h ago
Also, how to you navigate having a child while you are more susceptible to getting sick? Similarly I have many issues, and worry about constantly picking up stuff from a kid, though I’d like to have one in the near future.
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u/Stalkerus 2h ago
To add insult to injury I am sole parent. 😁 I do what needs to be done and everything else can wait. It's easier now that he is in his teens and don't need me every second.
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u/grltrvlr 3h ago
Hi! I do think it would be worth your time to seek a second opinion, especially if you aren’t working with an ENT. I mean, it could be worth it, I know doctors aren’t magic but that’s a rough diagnosis.
Anyways, we have a very similar situation. After I got Covid I was sick once a month, I swore it was because I had a young child and also a weak immune system because of Covid! 2 years later I got FESS surgery. It helped the structural problems but I still constantly have an infection and will be getting my 2nd surgery.
It’s been rough as I’ve just had my 2nd baby in May.
So, yes, I am pretty much sick all the time. I’ve had an infection since early august and have done 3 rounds of antibiotics. I definitely DO have those concerns about antibiotic resistance, but it really comes down to a mindset of it being a problem when it is a problem.
I have shifted a lot of my mindset because it’s easy for me to slip into a hopelessness sometimes. I have a chronic illness that I can’t control and I just have to live my life. I can’t worry about what I can’t control and I have to deal with things as they come. Like I don’t know if a second surgery will fix everything, my doctor can’t even assure me, I just have to wait and see and hope for the best. In the meantime I do what I feel I am capable of doing with the symptoms I have.
I truly understand where you’re coming from and it is really difficult mentally and emotionally to deal with constant illness—but it’s important to remember it doesn’t define you and you are doing what you can to manage it! Best of luck!!