“What path should I take in attempting to resolve an unidentified chronic oral infection?”

First off, I want to say this is going to be a long write-up. My issue is that I have an unidentified chronic infection in the mouth/gum/jaw area related to a wisdom tooth extraction I had in 2017. Due to this, I have been on various types of antibiotics since 2019, and it is causing other spiraling health issues as a result. Not to mention the constant pain.

Needless to say, I am beyond frustrated with my situation and have no clue what to do. There are so many little details and hoops I have jumped through to get whatever is wrong with me figured out – with literally 0 success on all fronts. Basically, this starts in 2017 when I had an abscess located between my lower left molar and my impacted wisdom tooth. The abscess was not *in* the tooth but between them. I had no money at the time, no dental insurance and I was not a student. Just a young woman with bad credit working minimum wage (in Canada). So, I go to the only dentist in the area that does payment plans, despite so-so ratings online.

I took a loopy pill during the actual extraction, so I don’t remember any of it. All I know is that afterward, I had a slice up the inside of my cheek almost to the palette, and one on my outer gum line (beside the cheek) all the way to the 3rd molar in. The Dr. said this is because my mouth was “too small.” Further, I noticed another pocket (abscess) of puss that was located beyond the wisdom tooth. I tell this to the Dr., and he tells me that it is not a second abscess or puss but a canker sore. He gives me 2 weeks of Clindamycin and sends me home. I had no idea about self-advocacy in medical circumstances or what to do if you disagree with a Dr. I was 22 and dumber than a brick. I go back in at 3 weeks for a checkup and that house of puss is even bigger than before, I point this out, but he blows me off again, gives me 1 more week of Clinda and that’s the last I see of him. I end up taking almost a month of Clinda given by my GP and the puss pouch disappears, leaving in its wake a gum depression that I still have.

Over the next 2 years, this weird gum pouch will show up 2x more to be treated with another round of Clindamycin. I had no idea what the proper procedure was for this or anything. I never saw another dentist during this time for financial reasons. My Dr. was really limited as to what she could do in this case I suppose.

Jump to 2019 May. I started having gum irritation all over my mouth. I’m working a better job at this point with some dental coverage, so I decide to go have my teeth cleaned for the first time in 6 years and see what’s up with my gums. I go see a proper dentist this time. This gum irritation begins on the right side, and so at the time, I saw no connection. However, in the week it took to get in to see the dentist it had spread to basically my whole mouth. No amount of brushing, flossing, scraping or peroxide rinse, or saltwater rinse did anything. (For reference, I had never, and have still never, had a cavity or any other dental problem other than what I described with my wisdom tooth and the following “mystery infection”). So the Dr checks over and cleans my teeth, says that considering how long it had been since I had them cleaned they were in great shape overall (looked more like 1 year of buildup, not six-her words – I do scrape at home with my own dental kit, idc what anyone says it’s obviously saved my teeth when I had no dental care available). She is perplexed by my gum irritation issues. She gives me some Peridex and tells me to use a softer toothbrush. I was making it worse from over-brushing with a hard-bristle brush).

Months pass. I brush 3x a day with a soft toothbrush and toothpaste with basically no additives of any kind and no menthol to make sure I’m not irritating it. Regular salt rinses and my gums are still irritated, esp. concentrated in that gum depression far, far back in my mouth and the surrounding area. Now I start to get a little neck pain, lymph swelling on that side. My Dr. prescribes me more Clinda but all it does is stop it from getting worse and it doesn’t get better. This is the beginning of chronic pain. Since that started it has yet to abate to this day.

There is definitely something hard in there, in my mind I was convinced it was a teeny tiny bone chip blocking some internal pathway. (Nicked off during the surgery, there is a tiny place where a chip/ding on the jawbone can be felt under the strange cut the first dentist made up to the 3rd molar). This blockage is causing puss to build up in that area and it hurts like hell. First, my GP thinks, perhaps salivary stone? But there is no real evidence for it. I get an x-ray. Shows nothing. I get a CT with contrast dye (for tissue, not bone). To look in the neck. This is probably September or October 2019? (I don’t have exact dates on hand, and so many tests were done it’s hard to keep it all straight). Of course, I also get blood work done and some other things checked just to make sure. There are some low neutrophils and higher white blood cell count. Definitely an infection of some kind. (Obviously imo as it responds to the Clindamycin.)

However, there are almost no visible symptoms of infection aside from the hard lymph and a little heat in the area. (No massive pustules, no fever, no big swelling – minor and occasional) Mind you, I am on antibiotics for 90% of this time. They do the CT (the second in my life) and see no blockage but DO see a buildup of liquid in the soft tissue of the neck. How did an infection/liquid get into the soft tissue of my neck, I ask? (Which I also asked when they saw the same thing from the ultrasound I had on my neck some weeks before) No real answer. I know there is a blockage in there as I could feel it very distinctly. (The pressure, the hardness, the little point of pain.) The infectious disease specialist basically dismisses my case as irrelevant and is still hanging on to the salivary gland stone diagnosis even though there is literally 0 evidence to support it. Either that or it’s in my head, she more-or-less implies. I guess the blood cell counts were in my head too. (Another GP I saw for a second opinion tried to tell me it was muscle tension and to learn to meditate but I digress – this is only relevant to how I feel about my current situation and not much to the outcome)

Fast-forward past 2 more fruitless trips to the dentist, another x-ray, and several appointments booked with people who can’t help me (an ENT and some other specialist I never did go see). All the Drs continually refuse to acknowledge that I can feel puss or some kind of fluid (it is painful and hot when it is moving down so I assume it is infectious runoff) running down the inside of my neck. When I am off the antibiotics I can feel it all the way into my left breast and even the first shoulder joint. I am told this is essentially impossible? Or perhaps just too unlikely? Nothing is clear. At some point between appointments booked with another specialist – A meeting with a Maxillofacial surgeon set up for June (it’s March at this point and COVID and lock-downs are in full swing slowing the whole process to a crawl).

I go off antibiotics for a month to see what will happen, essentially. The pain obviously increases. It prevents me from sleeping. I AM having muscle tension and jaw clenching at this point from the pain. The gum inflammation/spontaneous gingivitis is now a permanent resident in my mouth. There is pain, heat, and minor swelling along my jaw. There is no definitive bulge anywhere but that area under the 3rd molar hurts to press on along the jaw. Before I get to see the maxillofacial surgeon, one day I feel the blockage come loose…it literally paints a red line down my neck (not along a vein or anything) down over my collarbone, and over my left breast. I feel the little…whatever it is go down until it reaches about midway to my stomach area (closer to the skin, but at that height) and then I can’t feel it anymore… I suppose the pressure of the puss buildup pushed it (???) loose. I'm assuming whatever the blockage was it was probably minuscule. This is of course conjecture as even though I took pictures of the red line and showed both the Dr. and surgeon they both basically glazed-eye over it and said it was indistinct and there’s no way to know.

I go back on antibiotics at this point as the infection was spreading into the throat airway and lungs due to wearing a mask and breathing in the bacteria all day. Coming up to the surgeon appointment I’m then taking more Clindamycin since the previous September (it is now May-June 2020) for about 10 months on and off. Without it the pain is excruciating and refers all the way down my arm and the left side of my neck as well as gum inflammation, pain along the left side of the jaw (deep pain), and pain in the wisdom tooth socket/old puss pocket.

I see the maxillofacial surgeon and he orders me a deep tissue scan, a CBCT. I also remember it cost me $210.00. He decides since he is a surgeon after all, that he will reopen the socket and debride the bone there and clean up any dirty tissue that may be causing the infection. The surgery is booked for November, right during midterms very convenient, since I am back in school at this point.

He doesn’t get the CBCT scan until 2 days before the surgery (it took a long time to get an appointment, that’s just what it’s like nowadays). Meaning he decided what was wrong with me and how to treat it without any evidence aside from what I described. Yet – and yet, I will be told again and again that the scans are basically all-important – if nothing is showing there then nothing must exist!

We go through with the surgery, and he is a good surgeon so no weird cuts or telling me my mouth is “too small” etc. During my follow-up appointment, he tells me that there was nothing on the CBCT that was indicative of anything really. He also says that although the tissue inside the socket looked “not good” (clinical term, I guess) there was no “grotty tissue” or bone that he was expecting. At this point, I tell him I have another locus of pain (for the second time, he ignored the possibility the first time and said it was just “referred pain” despite me feeling a pin-point deep pain along my jaw under that 3rd molar in) along my jaw that might have a second abcess/infected tissue/bone damage? He dismisses this again.

I wait a month or two, seeing the Dr every two weeks or so to get more antibiotics and see how it's doing. At first, it seems to be healing alright. Then I start feeling pressure, intense pressure, deep in my face. It feels like something is pulling from the inside, drilling a hole into my jaw from the gum depression straight through to my neck. The puss pocket is back and it is FULL. I call the surgeon's office to get advice and am told it is fine. One of the sutures near my teeth is loose and I pull it out (it’s the dissolving kind) as it is causing me additional pain. When I do, a FLOOD of the foulest liquid pours and pours out of the tiny opening. For over an hour I’m laying sideways/half upside down to drain and spit it out. I think to myself – there is no way this just came from the socket. This is over a shot-glass worth of puss. It’s like a fountain.

I tell this to the surgeon at our next meeting and he doesn’t bat an eye. Looks in my mouth and says the surgical wound is “healing up well”. I ask if it is normal to get a fountain of puss pouring out of a surgical wound and he dodges the question. Maybe it is but it sure didn’t seem right based on what I read from Dr. Google. For literal MONTHS and MONTHS, I go back to see this man nearly a dozen times, asking over and over why it isn’t getting better anymore and the hard gum tissue where the socket and depression were is beginning to go soft again and hurt. I ask if there is an alternative option, some other antibiotic I could try. After 2-3 months of pushing, he gives me Metronidazole. I asked for it, but I regret it.

Never in my life have I had such a miserable time taking medication before. The side effects were out of this world. He gave me 30 days of it to be taken in combination with the Clindamycin. I won’t list everything I felt over that near month of taking it (I couldn’t finish, stopped at about 23 or 24 days). This "question" is already a novel. Suffice to say it was like walking death. I have no clue how I completed assignments during this period honestly. I slept for 16 hours most days.

It did help in a sense – it gave me the most relief of mouth pain that I had had up to that point since it had started in 2019 (it was now February-March of 2021). When I finished it and the pain had not totally gone, I could tell the surgeon was done with me. I had begun to suspect I might have a bone infection – osteomyelitis. He basically said this was so incredibly unlikely it wasn’t worth checking. Which made no sense to me as there was obviously still something wrong. This whole time I had been pushing to get a bone scan just to CHECK. To get a bone biopsy. To see a different infectious disease specialist – literally anything. He said a bone scan would be pointless because it was too close to surgery so they would get a false positive. I kept asking this right up to 6mo after surgery and he still refused. The last time I saw him he said he would refer me to an infectious disease specialist but I never heard from his office again.

My GP was kind of at a loss. But she did solicit more Drs (people in useless specialties for this issue, she was grasping at straws) and got me that much-desired bone scan. During this time I also tried many "alternative" remedies that were either useless or worked about the same/ a little less effective than the antibiotics. At least I had a few months of not feeling barfy every day.

The result came back. They saw something, but don’t know for sure what it is or what it indicates. They wanted me to do ANOTHER CT with contrast dye, this time for bone. I ask, why didn’t they do that when I had the other CT? This will make 3 CTs in my life. I don’t want to trade a scan for future brain cancer. I booked an appointment to see another oral surgeon, with the intent on requesting an exploratory and paying for it out-of-pocket. I pushed the CT appointment ahead of that to see what this surgeon had to say first as I am very hesitant to get yet another high-radiation scan. Note that I have not had an MRI or bone biopsy at any point during this process.

You see, after the Metronidazole I had taken back in March and again in August, I had developed spontaneous tendon inflammation of both legs, especially the left (because the left side of my body hates me, I feel sometimes). It is so bad it is basically completely debilitating and my ankle swells like a grapefruit from even 20min of walking around or less than an hour of standing. I dropped out of my second year of uni after my GPA fell 2 whole points. I am now basically unemployable due to the chronic pain and my inability to stand/need to sleep excessively as the antibiotics make me so tired.

Fortunately, I also had an allergy test during this process and while I am still allergic to Amoxicillin (why I never tried it for this) I can take the alternative Cefprozil, which I am currently on and have been on since this September 2021. It is much more effective at controlling the spread than the Clindamycin which lost its effectiveness (and was never really that good) due to prolonged use. I am also on Diclofenac/Misoprostol anti-inflammatory for my leg. It makes the pain a bit more manageable but has not significantly reduced the swelling when not on the drug as my GP had hoped.

I go see this new surgeon and try to explain all this the best I can in 10 minutes. They give me another X-Ray in the office and, of course, there is nothing to see. He tells me he wants me to get another CBCT and compare it to the last one (so they can compare nothing to more nothing, I guess). He also says there’s no way I could have osteomyelitis as if I did half my jaw would be rotting off right now. I know this is not true as some people suffer from low-grade diffuse bone infections for years which dodge scans (uncommon as it is, it does happen). However, I suppose there aren’t enough indicators to point him there. Now the CBCT that cost me $210 dollars in 2020 is $320. I am unemployed and running out of what’s left of my savings/student loan money. He says after this scan he wants to co-book me with an Oral Pathologist and himself to review the situation (I did not even know such a thing existed, or what they do, so maybe this is good news. Based on my experience it feels like more hoop-jumping and pointless scans that will show inconclusive/nothing - I am not optimistic at this point). He says if she has no idea, he will then send me to see YET ANOTHER oral surgeon working out of the Uni I was studying at before my life caught on fire. He did not explain what for. He says he doesn’t want to do an exploratory as he will likely find the same nothing the other surgeon did. However, since I now have pain from the socket all the way to my canine on that side along the jaw, I feel if they cut on the OUTSIDE of the teeth where I told the other surgeon I have a constant heat/tingling pain as well (besides the cheek, not inside where the tongue is), you know, where the fluid buildup in my neck drains from - that they might actually find something. Since that is where the majority of pain is now located and may have been from the start. It’s hard to tell since antibiotics mask the true presentation of whatever it is but without it, I am in literal agony, so.

Am I right in wanting an exploratory? Should I push for a bone biopsy just to totally eliminate the possibility of osteo or is that just a painful waste of time? Can an oral pathologist see things on a scan that a surgeon can’t? Should I ask for an MRI? Is there another possibility of what could be wrong that I and all 7 Dr’s I’ve seen have totally missed? Should I go off antibiotics and wait till I’m dying of pain and inflammation and then go to a hospital? (Worst option but I’m seriously considering it). Should I just go along with the surgeon’s suggestions despite having massive reservations and having lost most of my faith in medical Drs at this point to care for my well-being in any meaningful way?

(My GP is the only one who saves me from total medical cynicism. She has really championed my cause here despite having no clue what’s wrong as she is not a dentist/oral surgeon)

I have an as yet unidentified oral infection stemming from an untreated abscess from 2017. I believe it is a low-grade bone infection but although there are signs of infection from bloodwork/antibiotic response nothing definitive has shown up on scans. I could hardly convince any Dr. of the 7 that I’ve seen that it is even a remote possibility and have had to push every step of the way to be heard. I have not had a bone biopsy or MRI. Only CT, CBCT, and inconclusive bone scan. (Indicating something maybe) The surgeon I am seeing now wants me to get another CBCT and see an oral pathologist – I want an exploratory. It has been 3 years since the beginning of chronic pain and infection and antibiotic use and my QOL and financial situation has massively deteriorated as a result.

The advice I am seeking – should I go with the Dr’s recommendations that feel like more hoop-jumping? Should I push for a bone biopsy? Is there some possibility everyone has missed? Is it possible it is a bone infection (if low-grade?) What else could it be? Am I wrong for wanting to push for an exploratory since they can’t seem to see jack-shit on any scans despite the obvious presence of infection? Does anyone have any advice at all because I am literally at my wits end emotionally, physically, financially, everything.