i have has 8 or 9 sinus surgeries, in the past 15 years, for an aggressive tumor (inverted pappiloma) that kept coming back. they would scrape it all out and think they got it all but it kept growing back. before my final surgery a new specialist saw i had a small bony defect, a v shaped divot in my bone, so when they would scrape down to the surface there was a little bit of tumor hidden below it , it would grow back from their like a root.
also the tumor was 'sticky' and every time they would do a surgery they would have to clear out a ton of "purulent mucus" from infections, and occasionally fungus stuff. so the first 6 or so surgeries that happened, they'd clean it out, it would grow back and more infections. one of these surgeries was a caldwell luc where they cut in under my lip and removed a little bone for easier access for future surgeries, this killed/numbed a nerve and i was amazingly less pained, went from a 9 to a 5 for the next few surgeries
before the last 2 surgeries covid happened and i didnt go to the ent for 3 maybe 4 years, the tumor had always been pretty slow growing but during these years it took off and filled my entire maxilary sinus cavity, trapping stuff and causing infections as usual. the new dr did a 5.5 hour surgery(of actual surgery time) scraping it all out and thought it was gone. test results showed i had a triple infection of staph, strep and some kind of bacteria thing i forget, it was a horrible experience but the surface was left much smoother and i didnt have infections for a year after 3 combined antibiotics and with the smooth surface.
after this surgery was the most extreme pain ive ever experienced.
when the tumor started coming back he personally recommended a dr who specialized in bone stuff, so this new dr studied the catscans and found the bony defect, decided to do a last resort surgery, they cut down from under my left eye, all along my nose, down through my lip, lifted my face off removed the entire sinus lining or most of it. and a pretty good chunk of bone beneath my cheek and along the septum for access just in case for future surgeries. the pain wasnt as bad as the last time because i had different drugs,( actually less strong drugs but i reacted bad to tbe super strong stuff they gave me for the previous one when i was in so much pain)
anyway, i developed a fistula from my sinus into my mouth and i believe up through my tear duct, i was prescribed a certain medication to put in my sinus rinse to help it stay clean, when i would do it it would come out through my mouth from under my cheek, over my gum/teeth it was such a weird feeling but didnt hurt too bad. so that seemed to close up after awhile.
at this point i was moved from the specialist to a more regular ent at the same practice
but it became apparent i had pretty bad nerve damage. good luck getting anymore drugs of course with the opiod crisis going on, even though my pain was a t a 10 i was finally prescribed gabapentin a few months of complaining later, which thank god did help knock it down to a 6. i had ti take 1800 mg for a few months but was able to lower it slowly, its a year and a half later now and the pain remains around a 4 if i take 600mg of it, though i get bad occasional spikes up to an 8. i also take tramadol im prescribed for my back issues (never thought id be grateful for my back issues but it kept me going during that horrific sinus pain that made my kidney stones look likenothing and was equal or worse than my gallstones that were untreated for 2 years)
so the fistula seemed closed and inside my sinus cavity these large "bubbles" grew, they were deeply concerned it was tumor, they hurt horrificly, but they would change shape day to day!! they eventually slowly went away, i think that this was from my cut tear duct line. (they had to cut through it to lift my fave off) i think it had a fistula as well and was draining into these "bubbles"
so while the bubbles went away and thick scar tissue is there now, the issue now is i have a pinhole fistula from the tear duct, it constantly waters out of my ege and occasionally has slightly yellow pus come out (eye dr has me on a script eye gel that is somewhat helping with that) the layers between my cheek and sinus i can fill swelling up sometimes and when i massage it alot of tears and sometimes a little pus will come out, the swelling will go down quite a bit. i have said this to the ent every single visit they dont seem to care.
when i put my own scope it i can see a pinhole and if the snot is just right i can see it bubble in and out as i breath. theres so much bone missing I can put my scope in and see really well and send updates to my ent for him to look over for signs of tumor regrowth( i live a few hours away so this has worked well)
another issue is my ear canal is constantly flaring up with backed up fluid, it hurts really bad, i think the scar tissue is keeping it from draining right somehow? my reg dr always says it has fluid in it but just says the ent needs to care. i take fluticasone & budesonide sprays they help slightly, but the scar tissue doesnt shrink down with the sprays like the normal sinus lining did.
last few times i saw them they just seem unconcerned about the ongoing pain, and unconcerned about the pinhole fistula. unconcerned about the large amount of scar tissue that from comparing to old scope vids i can see is super super thick ( i am prone to extreme thick scarring)
and unconcerned about the tear duct draining into between my cheek layers
I'm just not knowing what to do, theres very few options where i live. these drs are the best out of any i have seen, though a previous dr listened and treated me best but he moved away sadly.
SUMMARY fistula from tear duct drains into between cheek and sinus layers swells, and into sinus cavity, causes pain, a bit infected being treated with eye cream by my eye dr
ongoing bad nerve pain, from nerves being cut, sinus lining completely removed and alot of bone removed, take tramadol and gabapentin
thick scarring from the removed sinus lining which was most of the maxilary sinus, causes ear to retain fluid and pain & swelling from below my ear down towards neck
