Isolating affected nerves? Any suggestions on meds, tests, or avenues to take?

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.


I have to no avail. I can't find anything that really matches my symptoms, feelings, and especially anything that results in a mass that forms. I'm stumped.

Cleo said:

you might want to look up maxillary complications after molar extraction and see what you can come up with.

One thing I didn't mention is that I was able to get the 2nd mass removed, albeit a year after it formed. I wanted them to go all the way up through the bone, penetrate the sinus, and biopsy EVERYTHING in that area. They only removed the cyst and the pathology came back as a tissue fibroma. That in and of itself should be benign, but there is obviously something, or at least a mechanism, that caused it to form twice and under similar circumstances.

I have investigated all kinds of lesions, including NICO, for any bone related issues. Unfortunately nothing is showing up on my scans and without a positive blood work up, obvious facial swelling, or positive imaging doctors are hesitant for surgical investigation.

As far as the craniology dentist, I haven't even heard of that before and my internet search didn't yield me very many results. As for my teeth yes, I had all 4 extracted at once. Maybe the teeth did cause something with the craniofacial balance, but fidning out what that is and how to fix it is a whole other story. If it's structural I think it has a lot to do with my muscle attachments/positioning being out of wack.

Jamie said:

Just reading the symptoms made me think of cranial mandibular disorder, a little different from TMJ. It can wreck havoc on facial muscles and the nerves. I knew an elderly lady who had it when I did the TMJ therapy thing (basically a mouth piece that just changed my bite and did nothing for my pain because it wasn't TMJ) and she complained of muscle spasms to the point of blinking her eyes hurt.

Have you seen a craniology dentist? Some TMJ dentist are quacks. Mine was. When I tried to tell him that it hurt INSIDE my mouth ( not the outer muscles) and that a tooth constantly brought nervy, burning pain ( this was when I still had the tooth. Its been extracted but the pain is still there) he would always say " that's because you're biting down on that tooth blah blah blah.

Also, I'm sure you've had blood work or whatever is done to test for MS?

It could very well be that you have some sort of myofascial pain related to a cranial mandibular disorder from the wisdom teeth extractions. Did you get them extracted all at once?

What did the "muscle masses" look like? Were they dark or black in color? I just did a search for maxillary muscle masses and found they can be cysts, lesions, tumors, etc. Check out the list. They definitely needed to do pathology on the muscle masses. That's the key to your proper diagnosis and hopefully pain relief.

I pray that you get the answers. I know how hard it is to be one of the people who don't have a clear-cut diagnosis for their pain origin. I'm one of them.

I would go to a reputable teaching hospital…or mayo!

Oh, hey…i am in lees summit!

I got my TN in remission with a TN guru in Michigan. Had to travel to get the best.

However, docs in KC cant figure out a different set of symptoms I’m having…and getting progressive.

They told me to go to mayo…

I asked if KU would suffice here… No

I told them I’m not wanting to spend the $$$ to travel back and forth to Minnesota or Arizona for mayo

I asked about Washington university in st. Louis… I was told that would be good
. They are listed in top 25 in usa
For many departments.

Just had my first visit…great doctor/professor…older, funny

Said he will figure out what i have!

Easy day trip there and back

Keep searching!

i went to Mayo in 2009 and saw an ENT, neuro, and an oral surgeon. I liked the ENT the best, but i was underwhelmed with the level of investigation I received. I went to Barnes Jewish Hosptal/Washington U and saw an oral surgeon that was the 3rd worst doctor I've ever seen. I'm sure they have great doctors there, but he was a total ass, pretty much telling me it was all in my head. I've been to Cleveland Clinic as well and their response was they'd typically send someone like me to Mayo.

I'd be interested to get the name of the person you saw. Right now I have 3 appt.s lined up in the next week; one with UMKC neuro (never seen them before), one with a Dr. Rosenberg here in town (heard good things about him), then one next week with a guy down in Tulsa. Hopefully these guys will be able to definitely tell me whether it's the nerves or something else and if they think it's something else, then I think I need some exploratory surgery/investigation to properly examine the structures near where the roots of that tooth were.

I just had an MRA this morning; maybe I'll get lucky and something will turn up but if past history/my luck tells me anything I doubt it.

Kc Dancer Kc said:

I would go to a reputable teaching hospital.....or mayo!

Oh, hey....i am in lees summit!

I got my TN in remission with a TN guru in Michigan. Had to travel to get the best.

However, docs in KC cant figure out a different set of symptoms I'm having...and getting progressive.

They told me to go to mayo.....

I asked if KU would suffice here..... No

I told them I'm not wanting to spend the $$$ to travel back and forth to Minnesota or Arizona for mayo

I asked about Washington university in st. Louis.... I was told that would be good
. They are listed in top 25 in usa For many departments.

Just had my first visit.....great doctor/professor.....older, funny

Said he will figure out what i have!

Easy day trip there and back

Keep searching!

I'm well aware of what the Oral Surgeons treat, I have seen more of them than 99.9999 percent of the population, but they won't treat what they can't see. I've found that out the hard way. As for the lesions, my mandible isn't the problem and all but one bone biopsy of the maxilla has been negative. I have a feeling if something IS going on with the bone its superior to the area that's been investigated. At this point I think I need to get (very) lucky.

Cleo said:

The link provided by Jamie list many many types of things that causes severe trigeminal nerve pain in the mouth.. NICO is akin to BS and that's why its not listed..The Oral and maxillofacial surgeon treats oral lesions and jaw disorders of all types.

For Washington U - I am with immunology

Who fixed my TN / head was Dr. Ken Casey--GURU, in Trenton Michigan -

he's seen it all in the head and face area - he is on the Face Pain Association board.

We did emailing first - then I jumped on his operating table!

I would email him - give him a summary and email him personally -

go maybe fly to see him,


he would give you an idea of who you should see if you send him records.

Want his personal email...

email me at ■■■■■■■■■■■■■■■■■■■

He's been doing this since 1970's - face pain is his game