[zacf]

I'll aplogize for the length in advance as I think this will get kind of long. The manifestations of my current problem started (noticeably) when I was in the 7th grade (I'm 30 now). I felt fatigued (in the face especially) all the time and although I'm not sure which happened first, I experienced a migraine during which I my head was like it was in a vice such that I felt like I was "frozen". The fatigue continued however, I eventually went into a 3 month sleeping funk in which every time I tried to sleep I felt like I was laying on a brick; additionally my eyes didn't want to stay shut and my facial muscles didnt' want to relax. It got to the point where I didn't know if these things were being caused by the lack of sleep or vice versa.

Eventually I started sleeping again but I never felt "right" after that. People started giving me **** about the way I was walking (I guess I was dipping down like I was "hot ****") and things didn't seem as easy for me (always was the top kid in my class). I also began feeling like my lips didn't fit together right and noticed my posture was poor. Until I got midway through high school I thought most of it was in my head but it got to a point where i KNEW something wasn't right. I experience a lot of neck and shoulder stiffness, particularly at the base of my head. I had Xrays and chiropractic treatments to no avail. The only thing which gave me relief was massages but that was temporary. Two days later it was as if something was pulling me back out of whack.

As I got into college things just kept getting worse. Now I was feeling awful every time I ate; it was as if the tightness in my back was wrapping around and pulling on my stomach. It would get to the point where I would vomit and have acid reflux (which I had never had before). This continued through the first half of my sophomore year. At Xmas break I went skiing with some friends and developed a very bad headache after we were done. I had difficulty breathing through my nose and thought I might be getting a sinus infection. When I was younger I had recurrent infections until I had surgery in the 5th grade (after which it was like night and day). Even though I had difficulty breathing through my nose, I was somewhat used to it as my airways weren't so good which I attributed to a partially deviated septum.

Once I returned home from the trip I saw a doctor and was put on antibiotics. Despite not having any drainage, I was sure this was my current problem until my headache continued to persist. Eventually I noticed my gums got sore when I went outside in the cold and started to think my wisdeom teeth (which erupted when I was 14/15) were maybe messing with my sinuses. Thinking all this was COMPLETELY unrelated to many of my other issues I had them out in Feb of 2001.

What occurred 2 post removal completely caught me off guard and shed some light on my (then) current and past problems. I was lying down just taking it easy, when all of a sudden my face felt like it loosened up. The best I can describe is the feeling of sinuses draining as you are getting over a cold. All of a sudden I noticed my face felt completely relaxed, my head felt AWESOME, and that i could breath UNIMPEDED through my nose for the first time in years. When I walked into the bathroom I couldnt' believe what I saw. The bridge of my nose was less swollen, and the previously noticeable slant to my left side was completely gone. My facial posture was much more relaxed, particularly my lips (I NOW realized why they previously felt like they didn't "fit together" right). The dark circles under my eyes were GONE for the first time in years. My overall posture was much better too as whatever was going on was causing my neck, particularly my left side, to be tight whish resulted in my left shoulder beign slightly elevated. This was gone too. I simply couldn't believe what I was seeing and feeling. I now realized I felt like I had been hit by a truck and hadn't slept in years. I prompltly laid down and slept for SEVEN hours in the middle of the afternoon. I NEVER take naps.

When I woke up from my nap, I didnt' feel as good as I did before the nap, but still better than before the surgery. Whatever was going on I thought would be sorted out once the sockets healed. Four days later I had to start going back to classes. This was February in Iowa mind you, and once out in the cold I noticed my upper sockets began to hurt (lowers had NO probs). It began to intensify so I went back to the surgeon thinking I had dry sockets. Upon examination he said the clots looked good and though I had some residual pain and inflammation from the surgery. Within three days of the appt. my upper right sockets caved in and after which caused me no more problems. My left one however, continued to hurt (it always hurt worse than the right). Then one day as I was coming home from class it began to throb and hurt far worse than it ever had before. I swept my tongue back to the sight and felt a small tissue "bubbel" forming inside the socket. Over the course of the next our (even after I got home) it conitinued to swell until it encompassed the entire socket. The area hurt like a ***** and it felt like I was being "pulled' toward that area. My nasal breathing worsened and I could feel a muscle in my mouth jutting out in rigidity. At this point I thought my sinus swelled into the socket or that I had an infection.

I return to the surgeon only to have him take an Xray and tell me the tissue is "pink and healthy". I said "********", and continued to tell him how the tissue formed in an HOUR, was not present in ANY of the other sockets, and an onslaught of symptoms followed it's occurrence. It doesn't take an Einstein, much less a doctor to know something is wrong. He didn't want to do anything and I left infuriated. I hoped it would go away, but it continued to worsen over the next 7 days. I called their office EVERY DAY until they got sick of me. He finally decided to excise the tissue even though he didn't see "what good' it would do.

Immediately after teh excision the pain was "gone" but it was like my muscles on my left side in the maxillary region were "stuck". I started making these faces, pretty much stretching the muscles and letting them rebound. I would chew (on my right side) only once a day, and mixed in some facial massaging in between. Slowly but surely it was like I was rolling a muscle (complex) almost as if it had got flipped inside out. I also had this feeling of fluid in the area. It took about two weeks, but the musles on my left side continued to loosen and "roll" to the point I felt like something was about to snap. At this point chewing really helped so I chewed a lot on this particular day. When I laid down it was if somethign "let loose" and I immediately felt better. My nasal breathing improved and the muscles on the left side of my face felt much more relaxed.

The next morning it was like night and day although I didnt' feel nearly as good as I did on that 2nd day post removal. For the next week I continued the routine (eating, massaging, faces). Instead of so much feeling like I was "stuck" now, it was as if my body was rearranging my facial muscles in a different position. About a half an hour after chewing, I'd develop this instease upward pull (like a vacuum cleaner was sucking) in the socket area. This was also accompanied by a strong itching sensation as well. Each day the area was smaller and smaller, with the sensations getting less and less. As this is occurring the muscles in my face are becoming even more relaxed, my breathing was much improved, and I felt the best I had aside from that post surgery day than I had in years. What was cool about it was is that I could feel the change from day to day as the socket was healing. I realized how i was able to get so screwed up when i was younger as the change was much more progressive and slow. It had simply gotten to a point where I didnt' even know or remember what "normal" was.

I really though I was pretty much healed when I chewed one day with the absense of the icthing and pulling sensations. I decided to work out as I hadn't been able to do so in a while. I felt a little tried when I was done, as was expected with the layoff, and decided to visit the sauna/steam room. Immediately upon entry a small area, literally abou the size of a needle point, begain itching and tickling PROFUSELY in the socket area. It didnt hurt, so I simply figured the area was healing. I left, went back to my dorm, and went to sleep. I was awaken 3-4 hours later to find this bubble had reappeared with the EXACT same symptoms as before. Prior to this the physical shape and contour of the socket resembled the others. I didn't understand why this happened, but knew it was bad and attempted to see the surgeon to have him remove it again.

To my chagrin the jerk said the SAME thing he had when he first appeared and he didn't want to do anything. Looking back I made the mistake of not going back after the bubble removal as I didn't like the guy and didn't want to see him any more than I have to. Since he saw what he did before, he thought it was normal healing (complete BS) and wanted to stand pat. I went around to other surgeons, but due to the size of Des Moines many were in the same group and pulled the same BS. I hope the area would eventually calm down and heal itself. As I entered into the summer the musles on my upper left side began to get more rigid, although the pain in the bubble region began to subside. I met an endodontist who thought I might benefit from a splint so I had one made. At first it seemed like my facial muscles relaxed when I wore it at night, but it was as if they were still stuck back in the socket region and couldn't break free. As I went back for my junior year, it was like something comlpletely healed out of place and my head went into a full out spasm (everythign pulling to that left side). My hair started falling out like crazy, my scalp was dry, and I was almost an invilit from the excruciating pain. People thought I was losing my mind and I had to drop out of school. My head was so rigid, that the rest of the muscles (going fom neck to feet) started getting tight as well. It got to the point my toes would curl (cramp) and the only way I could keep them from doing so was to pace for hours. My parents aren't rich, and once I dropped out of school (I would have flunked out otherwise with teh pain I was in) I lost my parents insurance and was pretty much hopeless. Until you are there you wouldn't understand but I was in so much paoin I wanted to die. The only thing that kept me going was the thought of shoving it up someones *** when I found out what was wrong with me.

I continued to fight on and eventually found a surgeon that agreed the tissue was "suspicous". He decided to excise the tissue (I wanted him to completely start from scratch but with new bone forming between teh sinus and oral cavity he only went to the bone). The tissue was finally biopsied (not the first time) and I found out it was a tissue fibroma. In and of itself it shouldn't be a big deal, but there was obviously somethign abotu the circumstances and/or the origin the got me so messed up. The doctor wasn't too concerned about finding that out though and I hoped I would be able to return to "normal".

This wasn't to be teh case. I remained in pain with the feeling of stuck muscles and extreme facial tension, for most of the next for years. Slowly but surely I made enough improvements to where I could BS my way back to school and returned to finish out my last 2 or so years. Once back in school I was on insurance and resumed my search for what plagued me. I ran into some brick walls until I moved to Norman Oklahoma for my internship. There an oral surgeon decided to remove a small piece of bone in the area to check fro bone scars (i knew this wasn't it but went with it as it was what I could get done). The biopsy came back negative, but I experienced quite a bit of relief for about a week post surgery. Once the socket started to heal it was if I was stitched back in the "wrong spot' and the pulling returned in even great force than what it was prior to surgery.

From there I decided that maybe the tooth in front of the old socket was bad and found a VERY scary crockpot dentist to pull the tooth. They tried telling me the one in front was bad, but they pulled it anyway. That did nothing so I found another dentist to try a root canal on the one in front of it. After the root canal I was put on Clyndamycin...somethign I had never been on before. After about 3 days I started to feel better and I slowly began to improved oever the 10 day course of antibiotics. AFter they ran out I started to feel worse and 3 days later was put back on a 7 day course. Again I started to feel better until this round ran out, after which I started to deteriorate. Since all scans showed an absense of infection they discontinued the antibiotics (to my chagrin).

I continued to worsen as I moved to KC for my new job. Since here I have had a myriad of things done, all of which to no avail. The root canaled tooth eventually went bad, and I went out to Colorado where a dentist removed it (there was a cyst I could even see on teh Xray) and debrided bone and tissue. He sent it for biospy where it showed I had some osteomyelties. I was only on clyndamycin again and no IV antibiotics. I felt a little better for a while then started to worsen. Eventually an ENT ordered another CT scan (I had one in OK as well as a CT and an MRI when the bubble resurfaced for a second time and all were negativbe) and it showed a fistula in the area where I had the surgery as well as severely infected sinuses. I had FESS sinus surgery which was follwed by a fistula repair by the oral surgeon. Teh sinus surgery didn't help at all, while I noticed slightly improved breathing immediately after teh fistula repair (it subsided in about 2 days). My symptoms reappeared despite the seemingly absent infection.

At thsi point I try some TMJ treatment (again) and had a splint made. Both my joints look GREAT on scans and my pain does NOT eminate from teh jaw. The treatment did not work and I tried a neuro for the 2nd time (KU med). He was CONVINCED I had trigeminal neuralgia DESPITE my pain being physical in nature (you can SEE teh collapsation when I breath, muscles popping out in my face and as well as in my mouth). I also lack trigger points but he said I'd feel much better in 2 weeks after taking Neurontin. I humored him and took it for a month only to notice ZERO impact. At this point I'm like, "well...if I have all this rigidity AND it's being caused by a nerved shouldb't I have some abnormal firing rates? Why don't we do an EMG?". Now he asks me if I'd had one before to which I replied NO!!!! Why didn't you ask me this when I FIRST cam in here? So we had one done, and guess what, it was normal.

At this point I'm like f this and decided to go to the Mayo Clinic even though they were out of network. I drove the 7 hours, paid with my own money, only to have them read the scans I brought and say they saw nothing. I showed them my symptoms and even though they offered no answers they did little investigation which is why i went up there in the first place. One thing I got out of it was the ENT scoped my sinses and put them on the screen. He said they looked PRISTINE as there was an absense of inflammation. I said, well...I develop infections (always on my left side) in a moment's notice. He had no good answers. I walked away from 2-3 separate trips with NO answers. Not happy.

In the last few months I have seen ANOTHER TMJ specialist (this guy is great) but even he admits it's not likely a TMJ (I already know this) problem. He referred me onto a speech pahtologish (oral myologist who deals with facial muscles) and tried therapy to no avail. I have surgery scheduled for tomorrow with an oral surgeon; he is willing to go up, remove some scar tissue, and leave the area open so it can heal the way it wants to heal. I hope this will work as this is the closing thing I'll have had done to the first removal so I hope it works.

With that said I am very skeptical. This thing is like a friggin novel, but if there is anyone with suggestions of avenues to persue I am all years. After countless splints (3), muscle relaxers (zero help), neurological meds (Amitryptilene and Neurontin), MRIs, Xrays, CTs, 3d CT (different than ICAT cone beam), ICATS, and EMG there are very few things I haven't had done. I have thought about a myelation test to detect possibel nerve blockage, as well as a bone scan to detect a burrowed infection. Often times It feels like I have a softball in my cheek and if I press on the surrounding bone there isn't a shapr immediate pain, rather a throbbing fist makign pain right after I let up on the pressures. The muscles in my palate and left maxillary area are rigid, my head feels like its a rock, and I still can't breathe out of my nose. I've considered nerve damage (I'm doubting that though), structural problems (muscles fused, flipped, or displaced, osteomyelties in the bone, abnormal pressure and or inflammation of the bone, and or some kind of soft tissue problem. Whatever the case I am at a complete loss and am about ready to give up. Getting up everyday to feel like **** and be punished is no way to live life. Any help would be appreciated. Thanks.