Join Date: Nov 2008
Location: op, ks
Possible Osteomyelitis of Maxilla: Need Answers
I have posted in some of the other forums on this site, but never in this one as a problem I've been dealing with for 17 years (very bad the last 10) has eluded me. Several doctors (local, Univ. Iowa, UMKC, KU med, Mayo) have either been unable to diagnose, or have pretty much ignored me from the get-go.
My problem started when I was in the 7th grade (maybe sooner but looking back this is when I definately noticed a change). It began with EXTREME fatigue, especially in the face, and general lethargy. I'm not sure what happened first, but I also experience an SEVERE migraine which caused me to throw up on the way to the doctor. I had a history of sinus problems previously (so headaches were a way of life) but this was different. I remember feeling like I could hardly walk as my head was in such a vice to where I felt "frozen". My doctor asked me if it was sinus, and all I could do is point (to my left side) where the pain felt the worst. They gave me a shot and the next day I felt like a million bucks. Looking back I know this was the start of it all.
Eventually the fatigue began to worsen and I went in to a 3 month long sleeping funk. As a 12-13 year who couldnt' sleep at ALL, I got to the point to where I couldn't tell what was causing what. Every time I laid down to sleep my pillow felt like it was a brick, my face didn't want to relax, and I just couldn't get comfortable. Eventually I started sleeping again but I never felt "right" after that. As a very intuitive kid (always knew when I was sick and what I had) it troubled me that I couldnt' put my finger on it.
As I got inot high school though, it became more and more evident I had a real problem. I was very stiff at the base of my head, down through my neck, and getting down into my shoulders. I tried Chiros, massage, had xrays but nothing worked (massage gave relief for about 2 days). There many other things I would notice but explain away: severely impaired nasal breathing (deviated septum), my lips not feeling like they fit together right (it's "in my head"), poor posture, labored smile (what??), difficulty concentrating, headaches when do strenuous activity (wrestling...figured it was my conditioning), etc. It got to where I though I was becoming a hypochonriac or something. I didn't see, nor did I think any of these things were all related.
It wasn't until I got into college where things started to make some sense. As I got into my soph. year it got to wear I started to feel like crap every time I ate. I saw more doctors...even went to Mayo (my family has a history of gall bladder issues) but everything checked out. Things culminated when I went skiiing during winter break. After we got done I developed a very bad headache which didn't go away. My breathing was also severly affected (nasally), so despite having no drainage I thought I had a sinus infection. After a course of antibiotics and a humidifier with ZERO relief, it got to where I noticed my teeth got sore every time I went out in the cold. I always noticed I got real tense with increased neck pain when I was out in the cold previously, but this got me thinking. I hadn't had my wisdom teeth out yet (they were fully in, no impaction) and began to think mayve they were affecting my sinuses.
I scheduled a removal surgery (all four) and had them removed in late Jan/early Feb of 2001. Immediately after I felt different but wasn't sure why. The second day after surgery however, I was lying down taking it easy when all of a sudden I felt this draining sensation on my upper left side. Over the course of the next few minutes I noticed my face felt completely relaxed, and this big weight had been lifted off of me. I sat up and took a deep breath through my nose: ZERO impedence. I got up to look in the mirror and couldnt' believe what I saw. My facial appearance was vastly different: my lips were more relaxed and puckeredd (now the lip thing made sense), my smile looked more natural and symmetrical, the bridge of my nose was no longer swollen, and the dark circles under my eyes were gone for the first time in YEARS. Additionally my entire body posture was improved. My neck (left side), shoulders (left shoulder never wanted to hang down), and back were completely relaxed and square. My hips which had been off kilter were sqare as well. For the first time in YEARS I felt normal and knew it was normal. I also felt I hadn't slept in DECADES: I was draind from head to toe. I NEVER took naps, yet laid down for 7 hours in the middle of the day. I didn't understand what was going on but thought it was over. I was relieved.
After I woke up I was dismayed to find I had reverted back to my previous condition, although I still felt better than pre-removal. I went back to school about 4 days later and immediately started having problems with my upper two sockets (when I went out in the cold). I called the surgeon as I thought I was having dry sockets and I immediately went in for a check. He said my clots looked good and that it was likely residual swelling/pain from the surgery. I hoped he was right and left. Well...he wasn't.
Eventually my upper right socket caved in and healed, but my upper left, which hurt worse from the git-go, continued to THROB. One day as I was heading back from class it hurt worse than it had before. Upon sweeping my tongue back there, I foudn a small tissue bubble forming in the extraction socket. At first it was small, but over the course of the next hour it swelled, encompassing the entire socket. The pain was immense; it felt like somone was making a fist in that area, I had muscles jutting out inside my mouth, and I could barely breath out of my nose. When touching the bubble it THROBBED. I thoguht I had an infection or my sinus swelled down into the socket and I went back to the surgeon.
This guy was a real *******. Upon explaining my current symptoms, the relief of the symptoms post surgery, and how the bubble definately wasn't right, he continued to conclude it was "pink healthy tissue" and since the Xrays were negative there was nothing wrong. I wanted to strangle the guy as it was obvious A) the other sockets were NOT like this B) I had no pain elsewhere C) i couldn't breathe and had muscles popping out in my mouth. Since he was reluctant to do anything I left hoping it would go away.
Well, it didn't. After calling EVERY DAY for the next week, he decided to clean the site out and let it heal from scratch. Immediately the pain was gone, but it felt like my face was "stuck" (no droopage, more like tension) out of place. Over the next 2 weeks I would make these faces as if I were trying to pull the muscles on the left over to the right, chew a meal on the right side ONCE a day, and massage the muscles in my upper right maxillary area. Slowly but surely my muscles started to loosen up. It was very weird in that I always felt this fluid feelign up in the socket area. Also when I'd eat the area would get very "tight" or like someone was making a fist in that area, about a half hour after I ate and would last for several hours. Each day I felt better and better until something finally let "loose". I experience somewhat the same feeling I had post-surgery and I felt MUCH better after this. Then for abotu the next week, the socket site would pull upward, get very tight, and itch immensely starting about 30 minutes after eating and lasting at least 2 hours. Every day the area felt smaller and smallerl; all the while my breathing continued to improve, my facial muscles loosened, my entire body became more relaxed, and I was more energized when I awoke in the morning. Finally one day it didn't itch, pull, or anything after I ate and I decided to go work out at the rec center/
After I worked out I made a huge mistake (in retrospect) and went into the steam room/sauna. Immediately upon entering a very small area above my now close socket began to itch and tickle immensely. Sicne there was no pain I shrugged it off as part of the healing process. After about 20-25 minutes I went back to my dorm, showered, and went to bed. I awoke 3 hours later to find I was in immense pain and this bubble came back. EXACT same sypmtoms as before, only this time the tissue formed when the socket was closed.
Of course I return to the oral surgeon and request that he go up there again. Being as I didn't go back post tissue removal (I didnbt' want to see him more than necessary as he was a jerk), he saw the EXACT same thing he saw pre-removal and told me he wasn't going to do anything. When I told him about the healing process and how it had been healing, he pretty much told me it was in my head and he wasn't going to do anything. I was irate and left wanting to strangle the man.
Over the next several months I saw several different doctors, all giving me the same BS answers. I tried a mouthguard for tmj to no avail. I was told it was allergies. It got to the point to where I hoped it would go away but it only got worse.
As I went back for my junior year things became dire. My head felt like it was in a vice 24/7, with everything pulling to the extraction site area. The muscles in the left maxillary region were spazzed out and sore. I could barely eat, and began getting vision problems. I finally had a CT and MRI but they were normal. I had to withdraw from school as I couldnt' read, concentrate, and could hardly move. My head hurt so bad and I became so rigid, that my neck was like a rock. My toes would even curl in a cramp and the only way I could keep them from curling was pacing hours on end. My parents thought I was losing my mind and I was admitted into a psych hospital. At first I was happy as I thought someone woudl FINALLY help me, but that wasn't the case.
After I got out, my head continue to hurt even WORSE just when I thought it had peaked. My head felt like it wanted to explode, and if my head was an orange juice would be coming out of my ears. I contemplated suicide every day not out of depression, rather reaching the pinnacle of my pain tolerance with no end in site. Eventually I found a doctor that agreed the tissue was suspect and I had it removed and biopsied. I had wanted him to remove all new bone and tissue to replicate the inital tooth removal but he would only go to the bone. It came back as a tissue fibroma; in and of itself this shouldnt' be a big deal but there was something about WHY and WHERE this tissue formed that held all the answers.
I hoped I would heal and return to normal, but it did not happen. I lost 3-4 years of my life as I was in no condition to work, had no insurane, and had no money to seek additional treatments. My condition slowly improved, but I still had a headache, all day everyday as I had the over the past few years. It got to where I felt I could go back to school and pull good enough grades to graduate. I finally graduated with a degree in 2008 with the expectation I would eventually find the source of my problem.
Before I graduated though, I completed an internship in Norman Ok. When I was there I found an oral surgeon who decided to check for a bone scar. The biopsy came back normal, but I found after 2 days of surgery I began to feel better. About a 7-9 days post-surgery when the area began to heal, the pulling and pressure began to return. This time it felt like it was worse than before, but the surgeon said everythign looked good. I had another CT: nothing. It got to where I thougth maybe the tooth in front of it was bad and had it pulled by a crackpot dentist to no avail. I then had a root canal done on the tooh in front of that thinking that could be the cause. It was then i was put on Clyndamycin which I had never been on before. VERY slowly I started to feel better...just very fatigued. I was on a 10 day course, and within 3 days of completion I started to feel worse again. I got back on another 7 day cycle and again noticed improvement. Keep in mind I am a SKEPTIC by nature, especially after years of failure so placebos aren't a possibility. Once this course ran out I felt worse again, but since there were "no signs" of infection they wouldnt' put me back on.
It wasn't until I moved to Kansas City until I really got into the elimination process. I found a doctor out in Colorado who seemed like an avenue to pursue so I drove out there for an appt. He found the root canaled tooth had a cyst ( I could see it on the Xray) and he saw a perforation in my lower sinus cavity. He decided to pull the tooth, extract bone and debride the region going back to near where my tooth was. I was only given local anesthic; even though i was numb and couldn't feel the sharp pain I could tell it didn't feel like he was going up far enough. In other words I could still fell my condition despite the anesthetic. He stitched my up and my dad drove me back to KC.
After the severe pain of the first few days I began to feel better. I was put on antibiotics (Clynda..again) and had the stitches out after 3 weeks. When the biopsy came and I got the report it stated I had low grade osteomyelitis with gray irregular tissue fragments as well as chronice sinusitis with lymphosite activity. Additionally it found strep viridans (and maybe one other). I was dismayed when the doctor FAILED to CALL to discuss the results, and despte my calls I really didn't get good information. Eventually the pain and symtpoms came back AGAIN (after I started to heal) and I had another CT scan done. This time I had severe sinus infection and an oro-antral fistula. I had sinus surgery and a repair and debridement done by an ENT and oral surgeon respectively. The ENT did NOT culture the specimen (as he swore the fistule was the problem), and a small bone sample taken by the oral surgeon came back fine (this guy was a horrendous doctor so I don't hold this in high regard). For a whiel I felt better but the pain continued. Also despite the sinus surgery AND a septal reconstruction my breathing did not improve AT ALL. Only after teh fistula repair did it improve and that was only for a couple of days.
After the surgery and follow-ups the ENT said everything looked good. He suggested that it could be neuro (even though I had no trigger points, and I had physical symtoms that seemed uncharacteristic of nerve damage) I went to a neruologist at KU med. Immediately he said I had trigeminal neuralgia, and put me on neurontin. I told him I was well aware of that conditon, researched and talked to numerous afflictees, only to find that NONE of my symptoms matched ANYTHING I had seen regarding TN. He swore I would feel better in 2 weeks, but after a month of taking the stuff I noticed no change. I finally said "Look, with all the rigidity I have in my face wouldnt' I have an abnormal firing rate if the nerves are involved due to it being that way ALL THE TIME? Why don't I have an EMG done?'. He then asks if I'd had one before: this should have been one of the FIRST things he asked when I came in!!!. I had one done and it came back completely normal.
Over the past several years I have tried muscle relaxers, neuro meds, 3 TMJ appliances, seen 3 neurors (incl. KUMed and Mayo), seen NUMEROUS oral surgeons (including the chair at UMKC and one at Mayo), numerous ENTs (mayo, UMKC), oral pahtology at U of I, an oral myologist, pain meds, etc. to no avail. The ONLY times I have had some relief is when I've had surgery where my wisdom teeth and or bone has been removed from the area. Also Clyndamycin seemed to help the first time I was on it, but I think I've built up a resistance as it was less effective the other 2 times I've been on it. Most of my scans are clear, aside the ones that showed the fistula, the absess, and teh sinus infection.
Just last week however, I had an oral surgeon perform a relatively minor surgery in which he removed some scar tissue in the area of the problem. He said everything looked okay when he was up there, and at my request he left the incision open to let it heal on it's own. He did put some packing up in there, and a day before my follow-up (this past Friday) it fell out. When I put my tongue back there to see if it had COMPLETELY fallen off, I was able to feel the bone of which was presumably my aveolar ridge. I decided to put pressure on the surrounding tissue and bone to see if I could pinpoint anything. When I put direct pressure on the bone it about put me through the roof. The fist tightening sensation I have felt from day one intensified and the vice my head has been in tightented even more. Shortly thereafter this gridning/creaking/angry type noise and feeling occured in this spot (I have noticed this constantly over the years).
About the one scan I haven't had done is a bone scan. After considering the previous biopsy result, my symptoms, location, and history of events I feel I have some type of infection or a pressure buildup in my maxillary region. It seems to be weak enough not to degrade the bone to make it obvious but severe enough to cause the immense pressure/pain. It could also potentially explain the bridge swelling, muscle tightness in the area, and the lack of detection by the doctors. What I'd like from ANY of you that have had or no someone that has it is give me some advice, experts on the disease, and potential other methods of detection. I am currently living a life of torment in which everything I do is dictated my whatever is going on. Below is a list of symptoms I have had/have:
- Extreme pain in the area; it's feels deep and like someone is making a fist
- My head is in a vice 24/7
- Impaired nasal breathing despite lack of inflammation in sinuses AND surgery
- Muscle rigidity in problem area
- Hurts to put direct pressure on area: specifically in and aroudn wisdom tooth area (superiorly) and just below the cheek bone wear it attaches to maxilla
- Feeling of fluid (at times) in area.
- Often get a snap, crackle, pop, or fizz in area of question. Sometimes when I get this I feel better
- Also pressure soometimes instensifies and feels like an area is about to pop or explode. Occasionally it feels like fluid is able to move and the pressure is relieved. I can feel relatively better for weeks until buildup returns.
- Alchol often makes it worse. Let's say I try going out and get a good buzz. If it's not the next day, it's 2-3 days later I will start to feel worse (weakened immune system)
- I get recurrent sinus infections, ALWAYS starting on the problem side. A couple of times this has occurred AFTER drinking
- When I am in relatively bad shape eating makes it worse. It's not immediate, rather starting abotu 30 minutes after I eat. Pressure buildup, or some kind of blockage? Not sure
- If I am feelign relatively better sometimes chewing once a day helps. But if I chew too much it makes it worse
- Difficulty sleeping/feelign refreshed. Somtimes I can't sleep, but when I do I feel like **** anyway. ALWAYS fatigued.
- Pulling/pain on the roof of mouth and maxillary region
- Hair loss. This sounds crazy to most, but my scalp gets NASTY when I'm really bad. When the real bad stuff started to happend 10 years ago I lost 50% of my hair in 6 months. My scalp has become like a scab.
- Nite sweats. I often wake up in the middel of the night drenched in sweat
- No fever. I have run ONE fever in the last 15 years and that was when I had mono 4 years ago. I never run fevers with sinus infections and never have in the past so this is not a tell tale sign for me
Any help would be appreciated. I wish I had the money to go anywhere and see anyone but I'm not rich so I have to hedge my bets. I also apologize for the length but knowledge is power, so I figure the more you know they more you can help me.