Good evening everyone. My name is Zac and I'm new here. While I know there are several depressing, and sometimes (thankfully) uplifting stories on this site, I currently have a problem that has no concrete diagnoses. All I know is what it's doing to my face/head/body.
Whereas most of you experienced problems in your adult years, my problem started when I was 12-13 althought I didn't even know it at the time. Within a period of 5-6 months I had a severe migraine (the only headache I'd say that was ever a classical migraine), was feeling extremely fatigued in my face, and had a 3 month period where I couldn't sleep at all. I was always very intuitive, knowing exactly what was wrong, but this time I couldn't make sense of it. What's worse was that I couldn't disseminate what the sleep (deprivation) was causing from what was causing me not to sleep. Eventually I started sleeping again but I was never the same. I knew it but I could't pinpoint what it was.
As I got through high school it became evident that I had a problem. My neck was always tight on the left side and I always felt like I had a knot at the base of my skull. Xrays were negative, and they only thing that seemed to help were massages, but in 2 days everything would return. As I got into college, things began to deteriorate even more to the point to where I got sick every time I ate. Every "new" symptom that popped up was chased but it felt like i was simply chasing my tail. In my sophomore year of college I went skiing and developed a massive headache afterward that simply wouldn't go away.
After thinking I had a sinus infection and failing on the meds, I began to notice the gums around my teeth began to hurt, especially out in the cold. I decided my wisdom teeth (which had been all the way in since I was a junior in high school) might be causing the pain so I had them removed. Right away I felt different though I wasn't sure why. Then two days after removal I was lying down, taking it easy, when all of a sudden my face completely relaxed. It felt like this 1000 pound weight had been taken off of me. I got up and walked into the bathroom and couldn't believe what I saw. My nose wasn't as swollen, and the dark circles under my eyes were completely gone. Things that I had told myself for years were crazy: feeling like my lips didn't fit together right, my smile being "off", and my head not looking right on my neck...they were all true. This was the first time since I was 12 that I knew what "normal" was. I couldn't believe it. Also the breathing difficulties I had through my nose, the ones that I thought were from my deviated septum? Gone. Strangely enough my nose didn't even look as crooked. I was dumbfounded, relived, and physically exhausted. I felt like I hadn't slept in years.
I took a 7 hour nap and once I awoke many of the old "symptoms" had returned. But I was relieved because I finally knew what normal was, and I thought whatever it was was going away. Unfortunately I developed a complication in my upper left socket, after experiencing extreme pain when going to class in the cold. I soft tissue mass formed within minutes and encompassed the entire socket within the hour. Immediately I had muscles popping out in my mouth, had an extreme headache, and couldn't breathe very well nasally. I knew something was wrong so I went back to the surgeon.
This guy was a total prick. The Xrays were negative and he said it looked to be "pink and healthy tissue". When told of what happened post surgery he acted like I needed to see a shrink. He didn't do anything for me that day and the pain didn't go away. After calling everyday for a week he finally removed the mass. The pain was gone immediately, but the musles that were popping out in my mouth were still there. It was like I was stuck (not limp but taught). In three weeks, and with a very weird healing process I won't get into much, it finally seemed like it was healing. There were feelings of the muscle moving positions, ithcing, and pulling, especially after eating. Finally one day I ate and the sensations weren't there. Aside from the brief moment after surgery it was the best I had felt in years!
I decided to go work out and afterwards made the biggest mistake of my life. I thought I'd sit in a steam room sauna and relax after the workout. Upon entering this small area superior to the healed upper left maxillary extraction site began to itch and tickle profusely. There was no pain however so I chalked it up to something healing. I left, showered and went to bed. I awoked 3-4 hours later in the middle of the night and the mass had returned. Same size, same spot, same sypmtoms. This time however, I couldn't get the surgeon to remove it, nor could I get other oral surgeons in the Des Moines area to remove it (got blacklisted I would have went to another town if I was as savvy as I am now).
After months of hoping the pain and symptoms would go away, they didn't. The doctors I saw were piss poor in investigating and sending me to the right people. I suffered through the entire summer, then as I went back for my junior year the left side of my face essentially locked up. The muscles were so tight and wrought they felt like hamburger in my mouth. Splints, meds, and other treatments were useless. I had to drop out of school (4 years) and slowly I felt a bit better, but was still in excruciating pain.
What makes my case unique and bizarre is that my "pain" is more from the spasticity of the muscles; all of the muscles around the left maxilla are like a rock, all day and all night. Now the biggest pain appears to be from the spazzed out muscles but to be honest everything is so screwed up and painful right now that it's hard to tell. These spasms are causing a chain reaction, either neurally or otherwise, and the other muscles in my head (closer to the epicenter the tighter they are) are like a rock as well. I can't tell you how painful it is. When I move my jaw laterally you can here the muscles grind they are that tight.
Sorry for the long post but that lays the background. I don't know WTF is going on but I'm at a breaking point. The pain is intolerable and I feel trapped. Most of the doctors I see shuffle me around and it takes forever to get in anyway. All treatments to this point have been ineffective, and I feel no closer to the casue. This all I've had done:
- MRI - several - including the brain, neck, and TMJ joints. All normal
- CT - several - sinus, head, 3D CTs, you name it. I"ve probably had it.
- 3 phase bone scan. Negative
- WBC tracer test - negative for infection
- Neurography - paid 3000 bucks for this thing. Showed inflammation on my left side (no shit!) . Was hoping it would show damage or entrapment but that appeared to be negative.
- Xrays - several
- Surgeries - Thought there was something about the way that area healed and tried to get the area cleaned out from scratch. Went to Mexico twice to get it done and got jerked around twice.
- Blink test - normal
- TmJ splints - I've had 4 in my life, all of them different. Zilch
- Gaba, tegratol, amitryptaline, antis, baclofen, skelaxon...many of the typical relaxers and drugs. Nada.
- Nerve block - Speno block - numbed up my face, but my head was still in a spasm
- Botox - Looked like a goofball for 3 months. NO help whatsoever.
- Been to doctors in several states including Mayo and Cleveland Clinic. Sent my stuff to Hopkins but they didn't think I would be a good fit there (no dental program). Also been to Un of Iowa, UMKC, KU Med, among others. I was very disappointed with the Mayo trip as I felt they just looked at my scans rather than investigated. It was 3000 bucks out of pocket to.
- At the end of the day I present some weird symptoms. #1 the length of time in which I've had something going on (the age). The wisdom tooth appeared to be the culprit (maybe when it formed), but it may be in an area where I have something else going on. The masses that formed....I havent' found a doctor or a medical journal that has an instance of such an occurance happening, especially in minutes to an hour. Then there's the severity of the spasms. It's almost like I can chew on the muscles of my face, you now, like I'm trying to pull them out of something? I can't even describe it it's so weird.
Do I have TN? I don't know. I am having a hell of a time getting competent doctors to look at my symptoms, consider the background, then use deductive reasoning to try to find a cause. It's it's nerve there should be a way to check for that definitively, right? I think muscle biopsies should have been done a lone time ago to check for autoimmune response. My nerves are inflamed but is that a cause or an effect? I don't know. What I do know is I'm getting worse, and I promised myself 13 years ago that I wouldn't live like that again.
It's hard to explain to most people that suicide isn't just about depression. There is a level of pain people can reach and if that threshold is maintained or exceded for a length of time then getting rid of the pain supercedes all else. Right now my options are A) do nothing (not an option :)) B) exhaust all avenues (isn't working) or C the pine box. I don't really like any of my options right now so any advice, whether it be drs, medicaitons, or diagnostic procedures would be helpful.
Sorry for the length. I think its unavoidable though. Thanks.